I know it's been forever since I posted, but that's life and I apologize. The last time I blogged we had just seen Jake's new therapist for the first time. After an office-cancelled appointment, we finally got to see him again yesterday. I still really like him; I think he has done more for Jake in a few months than all the doctors combined thus far.
That being said, I will explain my title. A year ago, as mentioned in a previous entry, we had Jake tested for Autism. They said he showed some autistic like tendencies, but ruled out that diagnosis. The doctor talked with us about his behavior with the new medicine, which is amazingly better. I'm not saying it isn't. But he still has some 'quirks' I thought we would just have to learn to deal with. He still has meltdowns, however they are fewer. He goes to sleep on his own, without Melatonin, but he still gets up in the night, has night terrors and doesn't sleep well. Small triumphs, that's what I thought. I thought this was Jake and that's that.
While we were talking, he was observing. He asked Jake to please sit in the chair and talk to him for a bit. He was putting together a train track. "Ignored" him entirely. After a while, Allen picked him up, and was going to put him in the chair, he goes limp, but doesn't really fight like he used to. He did fight him to finish the train track. He got up, found the last piece, put it together, then calmly sat in the chair. No fight, but it had to be done first. Then the doctor would ask him a question, no answer. In an hour and a half, never once did he make eye contact with him. He tried to get him to. He would ask him a question and give him a choice, such as: "Jake, why do you think you are so hungry when you get home from school?"....No answer..."Do you think it is because your morning medicine isn't working anymore?" Barely pauses, Jake says, " I think my morning medicine isn't working anymore...."Or do you think it's because your afternoon medicine makes you really hungry?"..."I think my afternoon medicine makes me really hungry."...."Or do you think it's both?"..."Both, I think."...The doctor tells us that is Echolalia. I wasn't aware of that. That's all the conversation he got out of him. We asked him to put the toys up, which he did, and come sit with us. He does. Then randomly, he is up again, getting a truck. We thought he was going to play with it...not the case. It was in the wrong place. He put it elsewhere, then he was good to go.
He says to us, "I don't agree with Columbia's diagnosis. I would almost guarantee that he is on the spectrum. Not Asperger's, but on the autism spectrum. High functioning, but autistic. We need to have him tested again, because they missed it."
I say, "How did they miss that?! I have been saying it for years but no one would listen to me." His theory is that without medication, Jake had so many bigger, more prevalent issues, that the little subtleties of autism were masked, and they didn't see them in the 5 hours we were there, and he met with 1-2 people. So he is referring us to a center that tests for an entire day, then you talk with the doctors for another entire day, and he will be seen by 5 different professionals, in different areas of expertise, from Neuropsychologist, to Occupational therapist, to Speech therapist... He said, "I can tell you he is Autistic, but that's not enough. We need other doctors to verify it so we can get him some help. But we will get him the help he needs and he is so smart. I have kids that are autistic that will never go to college, he can go to college with work. But they missed it, he is on the spectrum."
On one hand I am so relieved because I'm not crazy. I've been saying it for 3+ years but no doctor would collaborate with me on that one. But on the other hand, I was hoping that we had all the diagnosis we were going to get. That we were on the right track, we were almost to the finish line. I know there is no real finish line with additional needs kids. But I wanted there to be. I wanted to be at it. Now I feel like we have had some sort of major penalty and forced to start at the beginning again. I feel stupid that in the back of my mind I have always thought this, but once someone actually says that word to you, it is earth-shaking. Life just got harder for him again. And even harder than it was to begin with. I want so much for him, this is not one of the things I wanted. But, it is what it is. I switch gears and learn to deal with it while we are on the 4 month long waiting list for our second opinion when we already know. Pretty much it seems like we are just getting the verification WE need to get him the help HE needs. I don't want to wait. I want it now so we can get down to business. He's sinking sometimes again, and I don't want him to go.
Tonight was a bad night. BAD bad night. Meltdowns from the time I picked him up from tutoring. Over everything and nothing. Not having enough change with me to get the snack he wanted from the gas station. My fault, I didn't take enough time explaining it to him. We just went in to grab something to drink, I had $2.05 in my pocket, and his drink was 99 cents without tax. I told him he could get a pack of peanut butter crackers, that were 69 cents. He wanted chips that cost $2.59. I could not explain it to him that I didn't have enough money and my purse was at Grammy's house. Commence meltdown. Not a fit, it was a meltdown. Something was off, big time, tonight. He was biting parts off his eraser, Allen took it to throw it away because it had become a choking hazard. Meltdown. That one lasted a long time. It carried over to home. He had eaten already so we suggested he go lay down and watch cartoons. NOPE! Screaming, crying, stomping, etc.... for like 35 minutes. During which he comes to me and says, "NO ONE WANTS TO PLAY WITH ME AT RECESS!" *Knife to the heart.* Right there my world crashed and the tears came. He has a few kids that will play with him, but to him, no one will play with him. He told me last week that a little girl named Ariana won't play with him anymore because he chases her. I told him maybe don't do that, kids don't like that. Today, no one will play with him anymore. He named 4 kids that will play with him, but there are a lot kids on the playground, 4 isn't enough. Those are his words. I had myself convinced that he was good socially. I was wrong. We are around him all the time, so we apparently don't notice it. But the kids in kindergarten already do. Won't it just get worse with time??
Now the doubting and questioning start back in. I hate them. We will get through it all; we always do. I love him too much to have it any other way. I just wish life hadn't dealt him such a difficult hand. Why do some people have it so easy and some so difficult?
He's different. I love him. He's mine. I will never stop fighting. Guess I'm gonna have to put on my gloves because it's going to get worse before it gets better.
Tuesday, October 16, 2012
Friday, August 3, 2012
Guilt and A new beginning?
Once again, I know it has been quite some time since I wrote anything, but as most of you have read my previous entries regarding Jake, I am sure you will understand why. I'm just gonna make a broad statement to start this off: I do not wish to offend ANYONE with writing this blog. That said, I will delve into some touchy areas today and I want to get them out there because they have been weighing on me for some time.
But for the most part, this will be a happy post, hence the snazzy yellow background. As most of you also know, we have been on this journey with Jake since a young age. Yes, he's just 5 now and that's still young. But I'm talking like less than 3 young. Continuously we have been told ADHD, severe, combined type. For those who don't know how it works, there are different types of ADHD and different levels of severity. There are kids that can just learn coping techniques and control their hyperactivity that way. They can 'just run it off.' Jake is NOT one of those children, Oh how I wish he were. He has the severe form, and the combined type means that he is overly hyper, overly inattentive and Extremely impulsive. People can say what they want, but I fully believe this is a neurobiological disorder, IE it's in the brain. Then we have been told possible Oppositional Defiant Disorder. These are the kiddos that when told to sit down, will stand up, even though they would rather be sitting. You tell them to write their name on their paper and they tear it up. Yes, I can see some of that in Jake at times.
We have had him tested for autism. He shows autistic tendencies but lacks some important traits and therefore is not autistic. Do not misunderstand me. I am so glad he is not. I know several people dealing with this and they deserve awards. It is such a tricky, weird, confusing thing. But I just couldn't be comfortable with the diagnosis we were given. Something has always just been off. But we are on our second pediatrician, have been to the big university hospital, and still that's what they tell us. At some point you should just accept it and figure out how to move on and deal with it. But I just couldn't picture my life that way, let alone his. How could he possibly go through life constantly angry, violent, wired for sound. There were days that he was strictly in survival mode, not functional.
Here is the part that will probably get me in trouble, but I'm going to write it, because I know there are other people dealing with the same thing and feeling the same way. Jake regularly spends the night with family members, because he wants to, and frankly because it gives me a break. He will be hell on wheels for me ALL WEEK LONG. Violent, screaming, destructive, angry, constant meltdowns, etc. So even though I miss him like crazy, and always tell my husband that I miss them too much and I want them to come home, I let Jake and Charley go. Because I need it, Jake needs it, and Charley is old enough that you aren't sneaking out on him anymore. Not a problem, right? Theoretically it shouldn't be. But here are where my feelings and insecurities regarding Jake come into play. I either log onto Facebook while they are gone and see pictures of happy, smiling faces doing awesomely fun things, that I would never have the guts to take him to do, because he is horrible in public for me, or posts about how fantastic he has been. Then we pick him up, and it is all about how wonderful he was, no problems, etc. We take him home and he is 10 times worse for me for the next 2-3 days than he was before he left. So what am I doing wrong? Why does he hate me so much that he treats me so badly and can go with other people and act like a normal little guy? I get meltdowns in restaurants and they get good behavior. So I cry, I cry a lot, and often. My own shortcomings and insecurities coming to the forefront, I'm sure. But I just don't want to hear it. I don't want to hear how awesomely fantastic he has been just to come home and try to kill me for 3 days. It sucks. Ok, rant done.
We have tried several different medicines. They seem to work just long enough to give me hope. It is odd, they will work for a little bit, but then it's like his body gets used to it, and he is back to his normal, wild self. Sometimes it will work for a month, sometimes from the beginning it is like you have given him a Tic-Tac. The most recent medicine was a Tic-Tac one. But I gave it to him because they told me to. After I called the doctor and told her how he acted on this new medicine, and the fact that he had become much more violent, angry, especially toward Charley, she said, 'Maybe we should send him to a psychiatrist.' So that's what they did, but his appointment wasn't until late November. So we took that appointment and I made my own with a different one. Word to the wise, doctors will make an appointment for your child even when they don't normally deal with children that young and don't know what they are doing. So after I called back per the pediatrician's request and found out that doctor doesn't see 5 year olds and will not medicate them, I cancelled that appointment. The doctor called and got his original appointment changed to July 30th. So we were just holding on by the skin of our teeth, praying this doctor would be the one to 'fix it'.
July 30th, 2012: The day that changed it all.
Yes, I'm being dramatic, but that's how I feel. We went to see Dr. Raymund Tan in Springfield, Missouri. Our appointment was at 11 am and we did not leave his office until around 12:55. Jake wouldn't talk to him. He asked us tons of questions and observed Jake. He is the only doctor we have ever visited that would stop talking to point out something Jake was doing that was of concern to him. His diagnosis: SEVERE combined type ADHD, Oppositional Defiant Disorder and Mood Disorder. To which I say, "Are we talking like bipolar disorder? Because that is in my family." He replied that maybe that's what it is, but at 5 you can't get a good view on the symptoms to be that specific. But maybe someday it will be labeled Bipolar, or something specific. Treatment? We keep taking the Kapvay (Clonidine) for the hyperactivity. But why doesn't this help, I ask. Because Jake's case is so severe that treating one symptom won't work. We have to find the right combination. So we are adding Abilify which, to be technical, is an A-typical antipsychotic, for the mood disorder and Focalin XR for attention and concentration. I know it seems like a lot, but it makes sense that treating one part doesn't work. At this point I'm still on the fence about the mood disorder, surely adding another label won't make a difference.
Boy was I wrong! After being informed that we need prior authorization from the insurance and another trip back to Springfield for samples of the Abilify, we have 2/3 of the medicines. We are still waiting on the Focalin. But we start the Abilify, precisely at 4 pm with his second daily dose of the Kapvay. He is like a different child. He is still sleepy while his body is adjusting. But part of this I am attributing to the fact that his poor little body has been sleep deprived for so long that now that he is doing better, it can finally rest. But when he is awake he is calmer, his mood is 1000 times better. He isn't violent, isn't mad all the time, he will let you touch him. He let me hold him, and kiss him for the first time in probably over a year. He usually cringes or claims it hurts. He has told me he loves me more in 3 days that I have heard in probably a year. He can sit and play like a typical 5 year old little boy. He enjoys Bubble Safari apparently. He has thrown nothing for 3 days. I took him swimming without help from Allen. He swam until time to go, and then he let me get him dressed and we left, without incident. We went to dinner last night in a restaurant and Charley was the one that acted out, not Jake. He is a different child.
Here is where the guilt comes into play. All those times that I got angry and cross with him for acting out; he couldn't help it. His constant bad attitude; he couldn't help it. The outward presentation of this mood disorder couldn't possibly have been as bad as what he was dealing with inwardly. He didn't want to be 'bad'. He would cry and tell you he didn't want to be, but then he would go right back to it. You could put him in time out all day long, and he would go right back at it. We weren't treating everything. We had him on one thing and expected it to work, and in essence, it was like giving him a Tic-Tac. All this time I have been placing blind faith into doctors, who are themselves, just human. I knew something was off, but I just couldn't get anyone to back me up on that. Finally, we have someone to back us up! I sit here typing this, with a snuggle little sandy-blonde head on my shoulder and tears in my eyes. I feel so guilty that he has been struggling so much for so long and I'm his Mommy and I didn't fix it. It's my job and I feel like for years I have been failing him. No, I didn't give up on him, I wouldn't ever do that. He is mine, I made him, and I owe it to him to take care of him. But I just have this overwhelming sense of failure, and guilt, mixed with immense joy because we are on the right track. But then more guilt because I wonder non-stop if this is my fault. Did I do this to him? The doctor said almost certainly he will need medicine for the mood disorder for his entire lifetime. Is that my fault, my doing? I tried to take care of myself while I was pregnant with him, and I know I have taken care of him since the day he was born. But what happened, where was that glitch along the way? I was depressed when I was pregnant with him and had to take anti-depressants, then I got a blood clot and I had to take blood thinner shots for 3 months during pregnancy. Did the introduction of those drugs cause that little change in his brain? Because if so, then it is my fault. People tell me all the time that it isn't my fault, God wanted him this way. But why would God do this to a poor baby who never did anything wrong?
But at this point, I have a renewed sense of hope. Things are good with Jake and I have a vision of what he can be in life that is different than I had a month ago. When he went to Columbia in October, he was given an IQ test and scored a 102. Higher side of average. That was on no medication at all. Dr. Tan is going to retest him once we get him lined out with the medication. His theory is if it was that high when he couldn't concentrate to save his life, it will almost undoubtedly be considerably higher when he is at his best. He said, "He is a very bright boy, I want to see just how bright he is. Because I think his score will be much higher." So we wait, we keep praying for good days and prepare for the bad ones. Because I'm not stupid, I know they will come. I just hope they come and go again. Not stay this time. I don't want to lose him again. He is mine and I want to keep him.
But for the most part, this will be a happy post, hence the snazzy yellow background. As most of you also know, we have been on this journey with Jake since a young age. Yes, he's just 5 now and that's still young. But I'm talking like less than 3 young. Continuously we have been told ADHD, severe, combined type. For those who don't know how it works, there are different types of ADHD and different levels of severity. There are kids that can just learn coping techniques and control their hyperactivity that way. They can 'just run it off.' Jake is NOT one of those children, Oh how I wish he were. He has the severe form, and the combined type means that he is overly hyper, overly inattentive and Extremely impulsive. People can say what they want, but I fully believe this is a neurobiological disorder, IE it's in the brain. Then we have been told possible Oppositional Defiant Disorder. These are the kiddos that when told to sit down, will stand up, even though they would rather be sitting. You tell them to write their name on their paper and they tear it up. Yes, I can see some of that in Jake at times.
We have had him tested for autism. He shows autistic tendencies but lacks some important traits and therefore is not autistic. Do not misunderstand me. I am so glad he is not. I know several people dealing with this and they deserve awards. It is such a tricky, weird, confusing thing. But I just couldn't be comfortable with the diagnosis we were given. Something has always just been off. But we are on our second pediatrician, have been to the big university hospital, and still that's what they tell us. At some point you should just accept it and figure out how to move on and deal with it. But I just couldn't picture my life that way, let alone his. How could he possibly go through life constantly angry, violent, wired for sound. There were days that he was strictly in survival mode, not functional.
Here is the part that will probably get me in trouble, but I'm going to write it, because I know there are other people dealing with the same thing and feeling the same way. Jake regularly spends the night with family members, because he wants to, and frankly because it gives me a break. He will be hell on wheels for me ALL WEEK LONG. Violent, screaming, destructive, angry, constant meltdowns, etc. So even though I miss him like crazy, and always tell my husband that I miss them too much and I want them to come home, I let Jake and Charley go. Because I need it, Jake needs it, and Charley is old enough that you aren't sneaking out on him anymore. Not a problem, right? Theoretically it shouldn't be. But here are where my feelings and insecurities regarding Jake come into play. I either log onto Facebook while they are gone and see pictures of happy, smiling faces doing awesomely fun things, that I would never have the guts to take him to do, because he is horrible in public for me, or posts about how fantastic he has been. Then we pick him up, and it is all about how wonderful he was, no problems, etc. We take him home and he is 10 times worse for me for the next 2-3 days than he was before he left. So what am I doing wrong? Why does he hate me so much that he treats me so badly and can go with other people and act like a normal little guy? I get meltdowns in restaurants and they get good behavior. So I cry, I cry a lot, and often. My own shortcomings and insecurities coming to the forefront, I'm sure. But I just don't want to hear it. I don't want to hear how awesomely fantastic he has been just to come home and try to kill me for 3 days. It sucks. Ok, rant done.
We have tried several different medicines. They seem to work just long enough to give me hope. It is odd, they will work for a little bit, but then it's like his body gets used to it, and he is back to his normal, wild self. Sometimes it will work for a month, sometimes from the beginning it is like you have given him a Tic-Tac. The most recent medicine was a Tic-Tac one. But I gave it to him because they told me to. After I called the doctor and told her how he acted on this new medicine, and the fact that he had become much more violent, angry, especially toward Charley, she said, 'Maybe we should send him to a psychiatrist.' So that's what they did, but his appointment wasn't until late November. So we took that appointment and I made my own with a different one. Word to the wise, doctors will make an appointment for your child even when they don't normally deal with children that young and don't know what they are doing. So after I called back per the pediatrician's request and found out that doctor doesn't see 5 year olds and will not medicate them, I cancelled that appointment. The doctor called and got his original appointment changed to July 30th. So we were just holding on by the skin of our teeth, praying this doctor would be the one to 'fix it'.
July 30th, 2012: The day that changed it all.
Yes, I'm being dramatic, but that's how I feel. We went to see Dr. Raymund Tan in Springfield, Missouri. Our appointment was at 11 am and we did not leave his office until around 12:55. Jake wouldn't talk to him. He asked us tons of questions and observed Jake. He is the only doctor we have ever visited that would stop talking to point out something Jake was doing that was of concern to him. His diagnosis: SEVERE combined type ADHD, Oppositional Defiant Disorder and Mood Disorder. To which I say, "Are we talking like bipolar disorder? Because that is in my family." He replied that maybe that's what it is, but at 5 you can't get a good view on the symptoms to be that specific. But maybe someday it will be labeled Bipolar, or something specific. Treatment? We keep taking the Kapvay (Clonidine) for the hyperactivity. But why doesn't this help, I ask. Because Jake's case is so severe that treating one symptom won't work. We have to find the right combination. So we are adding Abilify which, to be technical, is an A-typical antipsychotic, for the mood disorder and Focalin XR for attention and concentration. I know it seems like a lot, but it makes sense that treating one part doesn't work. At this point I'm still on the fence about the mood disorder, surely adding another label won't make a difference.
Boy was I wrong! After being informed that we need prior authorization from the insurance and another trip back to Springfield for samples of the Abilify, we have 2/3 of the medicines. We are still waiting on the Focalin. But we start the Abilify, precisely at 4 pm with his second daily dose of the Kapvay. He is like a different child. He is still sleepy while his body is adjusting. But part of this I am attributing to the fact that his poor little body has been sleep deprived for so long that now that he is doing better, it can finally rest. But when he is awake he is calmer, his mood is 1000 times better. He isn't violent, isn't mad all the time, he will let you touch him. He let me hold him, and kiss him for the first time in probably over a year. He usually cringes or claims it hurts. He has told me he loves me more in 3 days that I have heard in probably a year. He can sit and play like a typical 5 year old little boy. He enjoys Bubble Safari apparently. He has thrown nothing for 3 days. I took him swimming without help from Allen. He swam until time to go, and then he let me get him dressed and we left, without incident. We went to dinner last night in a restaurant and Charley was the one that acted out, not Jake. He is a different child.
Here is where the guilt comes into play. All those times that I got angry and cross with him for acting out; he couldn't help it. His constant bad attitude; he couldn't help it. The outward presentation of this mood disorder couldn't possibly have been as bad as what he was dealing with inwardly. He didn't want to be 'bad'. He would cry and tell you he didn't want to be, but then he would go right back to it. You could put him in time out all day long, and he would go right back at it. We weren't treating everything. We had him on one thing and expected it to work, and in essence, it was like giving him a Tic-Tac. All this time I have been placing blind faith into doctors, who are themselves, just human. I knew something was off, but I just couldn't get anyone to back me up on that. Finally, we have someone to back us up! I sit here typing this, with a snuggle little sandy-blonde head on my shoulder and tears in my eyes. I feel so guilty that he has been struggling so much for so long and I'm his Mommy and I didn't fix it. It's my job and I feel like for years I have been failing him. No, I didn't give up on him, I wouldn't ever do that. He is mine, I made him, and I owe it to him to take care of him. But I just have this overwhelming sense of failure, and guilt, mixed with immense joy because we are on the right track. But then more guilt because I wonder non-stop if this is my fault. Did I do this to him? The doctor said almost certainly he will need medicine for the mood disorder for his entire lifetime. Is that my fault, my doing? I tried to take care of myself while I was pregnant with him, and I know I have taken care of him since the day he was born. But what happened, where was that glitch along the way? I was depressed when I was pregnant with him and had to take anti-depressants, then I got a blood clot and I had to take blood thinner shots for 3 months during pregnancy. Did the introduction of those drugs cause that little change in his brain? Because if so, then it is my fault. People tell me all the time that it isn't my fault, God wanted him this way. But why would God do this to a poor baby who never did anything wrong?
But at this point, I have a renewed sense of hope. Things are good with Jake and I have a vision of what he can be in life that is different than I had a month ago. When he went to Columbia in October, he was given an IQ test and scored a 102. Higher side of average. That was on no medication at all. Dr. Tan is going to retest him once we get him lined out with the medication. His theory is if it was that high when he couldn't concentrate to save his life, it will almost undoubtedly be considerably higher when he is at his best. He said, "He is a very bright boy, I want to see just how bright he is. Because I think his score will be much higher." So we wait, we keep praying for good days and prepare for the bad ones. Because I'm not stupid, I know they will come. I just hope they come and go again. Not stay this time. I don't want to lose him again. He is mine and I want to keep him.
Monday, July 2, 2012
We're Back! Lock the doors and hide your valuables!
Oh where to begin?! I haven't posted in months. I know, I feel bad. I abandoned you all. I'm a bad blogger. Slap me around if you need to.
In all seriousness, I am going to make myself be more dedicated to this. I miss it. I miss having an outlet to vent. I miss people telling me they understand where I am coming from.
For the last, however long it has been, Jake has been pretty consistent. We have good days and we have bad days. He is currently on the other couch, watching Spongebob at 11:10 pm, instead of sleeping, with the pointed corner of a quilt running it along the outline of his top lip, whispering things to himself. He is peaceful. I wonder what he is telling himself, but he is quiet enough that only he hears it. He does this A LOT lately. I notice him repeating things he hears on the radio, television, in a conversation. I'm not really sure what to make of it. But it doesn't hurt anyone, so we will just go with it. It seems to be calming. Maybe I should whisper to myself! I can tell he's upset that he can't fall asleep. I'm not gonna lie, I wish he was asleep too.
He graduated Preschool in May. I am going to miss his teacher, she was awesome. He doesn't want a new teacher or new class. He HATES change like you wouldn't believe. I discussed this with several staff members at his school. In our district, you have the option to request specific teachers so I did my homework, surveyed several people about options and decided on 4 suitable options. Someone firm, but understanding of kids like him, willing to be in contact with me regularly, with a set routine, etc. I was assured that they would see to it he was placed with someone appropriate. Went Friday to look and he got none of the people I requested. There is no one in office this week to take my phone call; they should be happy about this! The same person that assured me she would be an integral part of his placement is one of the people that helped me arrive at my list of teachers. She also failed to get a booster seat placed for him on the bus last year, causing issues because he can't be still and failed to return my phone calls regarding an IEP (Individualized Education Plan) until 2 weeks of school remained, then told me it was too late. I don't think she wants to be my friend. I would love to be her friend, but she is making it difficult! She will help me or I will go above her head.
He is now beside me "reading" me a book. He can't read, by the way. He is making up a story according to the pictures. It's about bugs. He's still not sleepy! He just asked me if he could have another pill yet. (He takes Melatonin at night to help him fall asleep. )
I saw a picture today that was about a child with autism. It had little quirks written randomly around it. He does every single one of them. I should be happy that they say he isn't autistic, but I'm honestly not. Because he does textbook autistic things, but he makes eye contact on occasion and he talks to people. So they say he isn't. I think he could get more help with that diagnosis.
I try to take him and his little brother to do things during the day while my hubby is at work, but it is stressful for all of us. He doesn't listen to me, ever. I would love to take him to the public pool, but we went last year and he took off running and jumped back into the water, completely dressed, on our way out. I see other families doing things like this and they look so peaceful and I am jealous. I can't go to the store without having to worry what will happen. Walmart is hell lately. If Jake isn't flipping out about something, Charley is acting up. He didn't have terrible two's but he is having a difficult time with the three's! I count down the minutes until Allen comes home at night so I have some help, even when it hasn't been a 'bad' day. I feel bad that I expect him to work all day and then come home and help me. But I would go crazy without that help. Sometimes I just wish I could run away for a little while. I DID go see Magic Mike with my cousin the other day and Allen stayed home with the boys. Even the midnight showing. It felt amazing to do something normal, without having to pull two screaming kids apart. But I felt bad because he was at home while I was out. I feel bad because I resent him for working. He 'gets' to go out and socialize with adults while I 'have' to stay home with the kids. That's a jacked up way to think. I love that I have gotten to be the one to raise my kids, but there are still days where I just can't help but feel, for lack of better word, trapped. Again, jacked up logic.
Well, I apologize for the randomness of this post. I just wanted to make a proclamation of my intent to be a better blogger. Maybe I will do it now that I will feel accountable for my slacking! Please, feel free to comment or hit me up on facebook. https://www.facebook.com/traceyjsloan
In all seriousness, I am going to make myself be more dedicated to this. I miss it. I miss having an outlet to vent. I miss people telling me they understand where I am coming from.
For the last, however long it has been, Jake has been pretty consistent. We have good days and we have bad days. He is currently on the other couch, watching Spongebob at 11:10 pm, instead of sleeping, with the pointed corner of a quilt running it along the outline of his top lip, whispering things to himself. He is peaceful. I wonder what he is telling himself, but he is quiet enough that only he hears it. He does this A LOT lately. I notice him repeating things he hears on the radio, television, in a conversation. I'm not really sure what to make of it. But it doesn't hurt anyone, so we will just go with it. It seems to be calming. Maybe I should whisper to myself! I can tell he's upset that he can't fall asleep. I'm not gonna lie, I wish he was asleep too.
He graduated Preschool in May. I am going to miss his teacher, she was awesome. He doesn't want a new teacher or new class. He HATES change like you wouldn't believe. I discussed this with several staff members at his school. In our district, you have the option to request specific teachers so I did my homework, surveyed several people about options and decided on 4 suitable options. Someone firm, but understanding of kids like him, willing to be in contact with me regularly, with a set routine, etc. I was assured that they would see to it he was placed with someone appropriate. Went Friday to look and he got none of the people I requested. There is no one in office this week to take my phone call; they should be happy about this! The same person that assured me she would be an integral part of his placement is one of the people that helped me arrive at my list of teachers. She also failed to get a booster seat placed for him on the bus last year, causing issues because he can't be still and failed to return my phone calls regarding an IEP (Individualized Education Plan) until 2 weeks of school remained, then told me it was too late. I don't think she wants to be my friend. I would love to be her friend, but she is making it difficult! She will help me or I will go above her head.
He is now beside me "reading" me a book. He can't read, by the way. He is making up a story according to the pictures. It's about bugs. He's still not sleepy! He just asked me if he could have another pill yet. (He takes Melatonin at night to help him fall asleep. )
I saw a picture today that was about a child with autism. It had little quirks written randomly around it. He does every single one of them. I should be happy that they say he isn't autistic, but I'm honestly not. Because he does textbook autistic things, but he makes eye contact on occasion and he talks to people. So they say he isn't. I think he could get more help with that diagnosis.
I try to take him and his little brother to do things during the day while my hubby is at work, but it is stressful for all of us. He doesn't listen to me, ever. I would love to take him to the public pool, but we went last year and he took off running and jumped back into the water, completely dressed, on our way out. I see other families doing things like this and they look so peaceful and I am jealous. I can't go to the store without having to worry what will happen. Walmart is hell lately. If Jake isn't flipping out about something, Charley is acting up. He didn't have terrible two's but he is having a difficult time with the three's! I count down the minutes until Allen comes home at night so I have some help, even when it hasn't been a 'bad' day. I feel bad that I expect him to work all day and then come home and help me. But I would go crazy without that help. Sometimes I just wish I could run away for a little while. I DID go see Magic Mike with my cousin the other day and Allen stayed home with the boys. Even the midnight showing. It felt amazing to do something normal, without having to pull two screaming kids apart. But I felt bad because he was at home while I was out. I feel bad because I resent him for working. He 'gets' to go out and socialize with adults while I 'have' to stay home with the kids. That's a jacked up way to think. I love that I have gotten to be the one to raise my kids, but there are still days where I just can't help but feel, for lack of better word, trapped. Again, jacked up logic.
Well, I apologize for the randomness of this post. I just wanted to make a proclamation of my intent to be a better blogger. Maybe I will do it now that I will feel accountable for my slacking! Please, feel free to comment or hit me up on facebook. https://www.facebook.com/traceyjsloan
Wednesday, April 11, 2012
Medicine...Ugh.
So Jake has been on Intuniv for a bit now. There is a definite difference from Jake un-medicated and Jake with medication. With Intuniv they make 1 mg, 2 mg, 3 mg, and 4 mg tablets. 4 mg is the maximum dosage daily. The last time we went to the doctor he was hopping down the hallway, climbing in the room, etc so they recommended we bump from 3 to 4mg, the max dose. With all the other increases there would be a couple days of sleepy Jake. With this one...nothing. So I called the doctor and reported what I had seen. She suggested it was time we try something new. I agree.
The next step was stimulants. I had A LOT of reservations about this step. I have always said I didn't want for him to be on anything like Ritalin or Adderall. I don't know why, just because I have heard so many negative things about them. For some kids they work wonders. Stimulants are just a huge step. But we agreed. So I had to go get the prescription for Metadate CD, 20 mg and take it to the pharmacist. They are a controlled substance so they can't just call them in. $50 copay later, after the insurance saved us $247.99, we have a new bottle of pills.
So Monday evening I didn't give him his usual Intuniv. Tuesday morning at 8 am, I gave him the first dose. Now, some of you may wonder why on Earth would they give a child with Severe ADHD a stimulant?! Well, it has the reverse effect on these kids; it is a calming effect normally. It didn't take too long before I started to notice things were amiss. He was not calming down, in fact it seems to be wiring him. Oh yes, yes it was. It had a stimulant effect. He was shaking all over, his eyes were dilated, he was talking 90 miles an hour. His thoughts were disconnected and scattered with no pause between topic change. It was insane.
I call the doctor and they say, "No, it shouldn't do that to him. Don't give him anymore. It will wear off, don't worry. " So I watch and wait. He throws up, several times, I believe 5. There is no getting him to slow down. It scares me. I just keep watching him, looking at his eyes and taking his pulse. (It is fine, by the way.) So the doctor says, let's try Vyvanse. It is a different stimulant, a more purified form. Go get that prescription and take to the pharmacy. Go back in 15 minutes and they say, "Nope, you can't have it. We need prior authorization from the doctor. " Well no joke, I just got a different prescription filled. All the while, he is still not calming down. Still all shaky, talking fast, eyes dilated.
The nurse says she will call and get the authorization. Do not give him the Metadate on Wednesday, just give him the Intuniv until we get it figured out.
7 PM-Tuesday---we start trying to get him into bed because we figure it will be a rough night. He doesn't sleep. He can't. The medicine still has not worn off. Allen tries to get him to go to sleep. He won't. It wasn't like the normal no sleep. He just couldn't do it. So Allen finally comes to bed way way later, like midnight or so. Charley and I are in my bed because there was no point putting him in their room, Jake wasn't being quiet enough for him to sleep there. Well, Allen thinks Jake is sleeping. But really, not so much. So we keep telling him to try to sleep and checking on him every half hour, I think. I was up a lot last night. He was such a good boy though. He didn't do anything bad all night long. He just didn't sleep. He watched cartoons and looked at books. But no sleeping.
7:30 AM Wednesday...he's still awake. I call and leave a voice mail telling the nurse we do not want another stimulant. Just give us the Intuniv back!! She calls me when they open and seemed to think we should try the other one, it is more purified. I don't care; it is still a stimulant, purified or not. She tells me at some point the Intuniv may stop working all together. I tell her we will cross that bridge when we get there, but for now I don't want him on another stimulant that has the potential to do this to him.
So finally at about 10:10 this morning he fell asleep. He was up for over 26 hours. I woke him up to eat lunch and he went back to sleep right afterward. He is still sleeping. No more stimulants. If it works for your kid, more power to ya! But it did not work for him. He may not be perfect on the Intuniv but the 24 hours that he was on the Metadate were the most horrible thing ever. I had to sit there and watch him, just make sure that he didn't hurt himself or Charley and be able to do nothing, knowing full well that he was acting that way because of the pill *I* gave him. That sucked, a lot.
Here is the question this raised in me...If stimulants are supposed to calm children with ADHD and it didn't with Jake...it wired the poor kid for a full 24 hours with one pill....is their diagnosis right? How consistently does it calm these kids? If he is ADHD, shouldn't it have calmed him?? All I know is he will never take that pill again and I flushed the remaining 59 of them down the toilet. I didn't want them in the cabinet!
The next step was stimulants. I had A LOT of reservations about this step. I have always said I didn't want for him to be on anything like Ritalin or Adderall. I don't know why, just because I have heard so many negative things about them. For some kids they work wonders. Stimulants are just a huge step. But we agreed. So I had to go get the prescription for Metadate CD, 20 mg and take it to the pharmacist. They are a controlled substance so they can't just call them in. $50 copay later, after the insurance saved us $247.99, we have a new bottle of pills.
So Monday evening I didn't give him his usual Intuniv. Tuesday morning at 8 am, I gave him the first dose. Now, some of you may wonder why on Earth would they give a child with Severe ADHD a stimulant?! Well, it has the reverse effect on these kids; it is a calming effect normally. It didn't take too long before I started to notice things were amiss. He was not calming down, in fact it seems to be wiring him. Oh yes, yes it was. It had a stimulant effect. He was shaking all over, his eyes were dilated, he was talking 90 miles an hour. His thoughts were disconnected and scattered with no pause between topic change. It was insane.
I call the doctor and they say, "No, it shouldn't do that to him. Don't give him anymore. It will wear off, don't worry. " So I watch and wait. He throws up, several times, I believe 5. There is no getting him to slow down. It scares me. I just keep watching him, looking at his eyes and taking his pulse. (It is fine, by the way.) So the doctor says, let's try Vyvanse. It is a different stimulant, a more purified form. Go get that prescription and take to the pharmacy. Go back in 15 minutes and they say, "Nope, you can't have it. We need prior authorization from the doctor. " Well no joke, I just got a different prescription filled. All the while, he is still not calming down. Still all shaky, talking fast, eyes dilated.
The nurse says she will call and get the authorization. Do not give him the Metadate on Wednesday, just give him the Intuniv until we get it figured out.
7 PM-Tuesday---we start trying to get him into bed because we figure it will be a rough night. He doesn't sleep. He can't. The medicine still has not worn off. Allen tries to get him to go to sleep. He won't. It wasn't like the normal no sleep. He just couldn't do it. So Allen finally comes to bed way way later, like midnight or so. Charley and I are in my bed because there was no point putting him in their room, Jake wasn't being quiet enough for him to sleep there. Well, Allen thinks Jake is sleeping. But really, not so much. So we keep telling him to try to sleep and checking on him every half hour, I think. I was up a lot last night. He was such a good boy though. He didn't do anything bad all night long. He just didn't sleep. He watched cartoons and looked at books. But no sleeping.
7:30 AM Wednesday...he's still awake. I call and leave a voice mail telling the nurse we do not want another stimulant. Just give us the Intuniv back!! She calls me when they open and seemed to think we should try the other one, it is more purified. I don't care; it is still a stimulant, purified or not. She tells me at some point the Intuniv may stop working all together. I tell her we will cross that bridge when we get there, but for now I don't want him on another stimulant that has the potential to do this to him.
So finally at about 10:10 this morning he fell asleep. He was up for over 26 hours. I woke him up to eat lunch and he went back to sleep right afterward. He is still sleeping. No more stimulants. If it works for your kid, more power to ya! But it did not work for him. He may not be perfect on the Intuniv but the 24 hours that he was on the Metadate were the most horrible thing ever. I had to sit there and watch him, just make sure that he didn't hurt himself or Charley and be able to do nothing, knowing full well that he was acting that way because of the pill *I* gave him. That sucked, a lot.
Here is the question this raised in me...If stimulants are supposed to calm children with ADHD and it didn't with Jake...it wired the poor kid for a full 24 hours with one pill....is their diagnosis right? How consistently does it calm these kids? If he is ADHD, shouldn't it have calmed him?? All I know is he will never take that pill again and I flushed the remaining 59 of them down the toilet. I didn't want them in the cabinet!
Thursday, April 5, 2012
The Whirlwind that is Our Life
I know, it has been forever since I posted. I'm sorry. Call me a slacker; I'm cool with it. In all actuality, my life seems insane these days. I don't even do something magnificent daily, it just is...yeah...breathing isn't optional or I'd cut it out to save time.
We went to the doctor a couple months ago and she put us on Intuniv. Started at 1 mg and have now worked up to the max dosage at 4 mg daily. If this doesn't work our next step is stimulants, Ritalin and the like. I have huge reservations about these. Before we go that route the doctor said she will check his heart over and make sure it is okay, because stimulants are bad if you have heart issues. As my mother has an irregular heartbeat, I will be sure they check it well. The Intuniv has been working well until his body gets used to it, then we transition back to crazy.
He seems to be having more and more night terrors; I hate night terrors. We have had to limit his television watching. He can no longer watch Finding Bigfoot or Animal Cops. Some might say, "Those aren't children friendly shows anyway." Well, you tell that to Jake! He loved them. But one night while he was sleeping Bigfoot bit his fingers. No more Finding Bigfoot. Another night he had a screaming fit on his aunt while he was spending the night. He was struggling to take a collar that was embedded in a dog's neck from being too tight for too long. No more Animal Cops. He caught a few minutes of Criminal Minds by accident one night. That night he was up on his knees in his bed, doing something to the wall. When my husband went to check on him, he was saying, "I gotta get him! NO! I gotta get that bad guy!!"
If left to his own devices he would never sleep. I'm not joking even a little bit. Read the previous post, No Sleep Ever. He is this way always. I don't understand how a child can convince their body that it doesn't need sleep. Jake doesn't sleep and his little brother, Charley, doesn't eat. I kinda think they may be the next step on the evolutionary ladder. I'm not going all religious. People adapt, that's all I'm sayin. Maybe they are super-humans. They have figured out a way to convince their bodies that it doesn't need basic necessities. I wish I could do this. I require food and sleep. I don't get enough of the sleep, but I cope.
Anyway...my life is boring and crazy, all at the same time. My days are monotonous. Get up, feed boys, get boys dressed, entertain boys until time for Jake to go to preschool. Put Jake on bus. Clean. Usually go see my mom. (She is my adult contact that keeps me sane most days.) Go get Jake off bus. Clean. Dinner. Baths. Bed. Do it again. Somewhere in there I check Jake's backpack for random things he cabbages onto. Today it is a little pocket full of tiny paper trimmings. Why? Who freakin knows. There are boys on the bus that take things to school with them. Either they are very giving children or Jake is manipulative. I say this because weekly I have to send something BACK on the bus and make him give it back to these boys. They give him things and he takes them. I have told him countless times to politely decline, that their mommies might get mad if they don't bring things home. Nope. They gave them to him so they must be his. I have sent back cars, school work, a blue man, marbles, sunglasses, pictures, etc. Then he tries to sneak things to school with him! He feels the need to take these boys something back. I have to check his backpack before school and after. He gets mad at me daily. "JUST STAY OUT OF MY BACKPACK! I DIDN'T PUT ANYTHING IN IT!" But low and behold, something always finds its way into one of the pockets.
Oh, wow, I really got off onto a tangent on that one. Anyway, the doctor said we needed to see the Ear, nose and throat doctor about his ear tubes, the dentist about his teeth and the pediatric ophthalmologist because of his lazy eye. He has always had a sleepy eye, since birth. He was a pirate, argh and things. But as of late we have noticed that in most pictures he has his head tilted back; I think it is because the lid droops too much. So we get to have that checked out and surgery may be in our future. Part of his sensory issue is texture. Things in his mouth that feel funny make him throw up. Because of this, he has thrown up A LOT in his 5 1/2 years of life. He has caused the enamel on his teeth to thin. Also, he hates to brush his teeth, another sensory thing. (If you haven't ever read about or experienced Sensory Processing Disorder or Sensory Integration Disorder, do it.) It is the craziest thing ever. It makes no sense and total sense all at once. It explains the totally off the wall things he does. It frustrates the hell out of me. SPD overlaps immensely with Autism. Things he does are classically autistic. He stims. He verbally stims like a madman. He makes loud, inappropriate noises all the time. For an hour at a time sometimes he is a siren. He isn't really a siren, that's just what is sounds like to me. To him it is calming. To me it is annoying. He does it in Walmart. You get evil looks from people when your kid is sitting in the cart rocking making the siren noise. Bite me, people, bite me. I have asked him if humming does the same thing for his body and he says no, it does not. So we are loud. That's an autistic thing. But he has been tested and they say he is NOT autistic. It's apparently all just sensory. Well, that overlap is so frustrating to me. How do you tell what's SPD and what isn't? When should I get concerned and start demanding something different? Do I just take their diagnosis and be okay with it or spend more money to find someone that says something different? And this is why I don't sleep! THAT'S HOW MY MIND IS! I just constantly worry that I don't do enough. That I'm missing something. That he isn't getting what he needs from me and can't tell me what it is he is missing because he doesn't know either.
I've come to realize that it's a daily battle. Maybe outward one day. Maybe he is on one and I have to physically restrain him to keep him from hurting himself or breaking something. Or to keep him from hurting me. He's super strong. Or maybe it's a battle that's completely inward. Maybe I'm just questioning everything. Everything that led to this point, everything we still face. We are lucky, I'm so aware of this. He's healthy. We are all healthy. My child does not have cancer or a life threatening illness. But he is different. I accept his differences and don't or won't write him off as a lost cause. But I know there will be people that are quick to do so. And that's where my job comes in. It's my job to refuse to let them do so. He isn't just a 'bad kid,' he can't help the things he does. I REALLY, to the core of my very being, believe this. I have had conversations with him. He has told me that he doesn't like to be bad, that he doesn't like to be in trouble, that he doesn't know why he does bad things, and that he is sorry. So, I believe him. He's my baby. I have to.
I don't know the point of this entry. Maybe just to vent. We all need to do so on occasion. And to catch everyone up. So I'm sorry this was so all-over-the-place. That's how my mind works. It's an exhausting place. Welcome to it!
We went to the doctor a couple months ago and she put us on Intuniv. Started at 1 mg and have now worked up to the max dosage at 4 mg daily. If this doesn't work our next step is stimulants, Ritalin and the like. I have huge reservations about these. Before we go that route the doctor said she will check his heart over and make sure it is okay, because stimulants are bad if you have heart issues. As my mother has an irregular heartbeat, I will be sure they check it well. The Intuniv has been working well until his body gets used to it, then we transition back to crazy.
He seems to be having more and more night terrors; I hate night terrors. We have had to limit his television watching. He can no longer watch Finding Bigfoot or Animal Cops. Some might say, "Those aren't children friendly shows anyway." Well, you tell that to Jake! He loved them. But one night while he was sleeping Bigfoot bit his fingers. No more Finding Bigfoot. Another night he had a screaming fit on his aunt while he was spending the night. He was struggling to take a collar that was embedded in a dog's neck from being too tight for too long. No more Animal Cops. He caught a few minutes of Criminal Minds by accident one night. That night he was up on his knees in his bed, doing something to the wall. When my husband went to check on him, he was saying, "I gotta get him! NO! I gotta get that bad guy!!"
If left to his own devices he would never sleep. I'm not joking even a little bit. Read the previous post, No Sleep Ever. He is this way always. I don't understand how a child can convince their body that it doesn't need sleep. Jake doesn't sleep and his little brother, Charley, doesn't eat. I kinda think they may be the next step on the evolutionary ladder. I'm not going all religious. People adapt, that's all I'm sayin. Maybe they are super-humans. They have figured out a way to convince their bodies that it doesn't need basic necessities. I wish I could do this. I require food and sleep. I don't get enough of the sleep, but I cope.
Anyway...my life is boring and crazy, all at the same time. My days are monotonous. Get up, feed boys, get boys dressed, entertain boys until time for Jake to go to preschool. Put Jake on bus. Clean. Usually go see my mom. (She is my adult contact that keeps me sane most days.) Go get Jake off bus. Clean. Dinner. Baths. Bed. Do it again. Somewhere in there I check Jake's backpack for random things he cabbages onto. Today it is a little pocket full of tiny paper trimmings. Why? Who freakin knows. There are boys on the bus that take things to school with them. Either they are very giving children or Jake is manipulative. I say this because weekly I have to send something BACK on the bus and make him give it back to these boys. They give him things and he takes them. I have told him countless times to politely decline, that their mommies might get mad if they don't bring things home. Nope. They gave them to him so they must be his. I have sent back cars, school work, a blue man, marbles, sunglasses, pictures, etc. Then he tries to sneak things to school with him! He feels the need to take these boys something back. I have to check his backpack before school and after. He gets mad at me daily. "JUST STAY OUT OF MY BACKPACK! I DIDN'T PUT ANYTHING IN IT!" But low and behold, something always finds its way into one of the pockets.
Oh, wow, I really got off onto a tangent on that one. Anyway, the doctor said we needed to see the Ear, nose and throat doctor about his ear tubes, the dentist about his teeth and the pediatric ophthalmologist because of his lazy eye. He has always had a sleepy eye, since birth. He was a pirate, argh and things. But as of late we have noticed that in most pictures he has his head tilted back; I think it is because the lid droops too much. So we get to have that checked out and surgery may be in our future. Part of his sensory issue is texture. Things in his mouth that feel funny make him throw up. Because of this, he has thrown up A LOT in his 5 1/2 years of life. He has caused the enamel on his teeth to thin. Also, he hates to brush his teeth, another sensory thing. (If you haven't ever read about or experienced Sensory Processing Disorder or Sensory Integration Disorder, do it.) It is the craziest thing ever. It makes no sense and total sense all at once. It explains the totally off the wall things he does. It frustrates the hell out of me. SPD overlaps immensely with Autism. Things he does are classically autistic. He stims. He verbally stims like a madman. He makes loud, inappropriate noises all the time. For an hour at a time sometimes he is a siren. He isn't really a siren, that's just what is sounds like to me. To him it is calming. To me it is annoying. He does it in Walmart. You get evil looks from people when your kid is sitting in the cart rocking making the siren noise. Bite me, people, bite me. I have asked him if humming does the same thing for his body and he says no, it does not. So we are loud. That's an autistic thing. But he has been tested and they say he is NOT autistic. It's apparently all just sensory. Well, that overlap is so frustrating to me. How do you tell what's SPD and what isn't? When should I get concerned and start demanding something different? Do I just take their diagnosis and be okay with it or spend more money to find someone that says something different? And this is why I don't sleep! THAT'S HOW MY MIND IS! I just constantly worry that I don't do enough. That I'm missing something. That he isn't getting what he needs from me and can't tell me what it is he is missing because he doesn't know either.
I've come to realize that it's a daily battle. Maybe outward one day. Maybe he is on one and I have to physically restrain him to keep him from hurting himself or breaking something. Or to keep him from hurting me. He's super strong. Or maybe it's a battle that's completely inward. Maybe I'm just questioning everything. Everything that led to this point, everything we still face. We are lucky, I'm so aware of this. He's healthy. We are all healthy. My child does not have cancer or a life threatening illness. But he is different. I accept his differences and don't or won't write him off as a lost cause. But I know there will be people that are quick to do so. And that's where my job comes in. It's my job to refuse to let them do so. He isn't just a 'bad kid,' he can't help the things he does. I REALLY, to the core of my very being, believe this. I have had conversations with him. He has told me that he doesn't like to be bad, that he doesn't like to be in trouble, that he doesn't know why he does bad things, and that he is sorry. So, I believe him. He's my baby. I have to.
I don't know the point of this entry. Maybe just to vent. We all need to do so on occasion. And to catch everyone up. So I'm sorry this was so all-over-the-place. That's how my mind works. It's an exhausting place. Welcome to it!
Sunday, March 4, 2012
Our journey thus far
**I am going to apologize for the length of this post, but I want to give as much information as I can so that other parents going through this now or in the future will have my experience to compare to their own.**
As stated in the background post, this is not a new development. We've been dealing with everything since Jake was fairly young. I think we discussed medication with the doctor the first time when he was about 3. He had been going to speech therapy for a while and the therapist recommended that we try occupational therapy. (By the way, if your child is like Jake and you can get some Occupational Therapy going, DO IT. Their tactics seem insane but help.) After doing OT for a while his therapist asked if we had ever thought about medication because he wasn't getting as much out of his sessions as he could if he were able to focus even a little.
I was anti-medication for someone so young. I still have moments where I feel guilty. But then I think of how 'dysfunctional' his daily life was without it. The doctor we saw at that point laid a lot of blame on me. He advised us that we should make a wooden paddle, wide and flat with a handle. When he acted up we were to spank him on the bottom with it and if he wasn't crying when done then we didn't do it hard enough and needed to do it again. Then hang it on the wall where he could see it and it would be a constant reminder to act appropriately. I cried, A lot and told him I wouldn't. He said he wouldn't get better because he already knew at 3 that I was a push-over. I asked him what was I to do when he told someone we beat him with a paddle and they called child protective services on us. He said, "Give them my phone number." We stopped seeing him shortly afterward. He was on Intuniv 2 mg and Divalproex 125 mg twice daily for mood swings. The doctor had him diagnosed as ADHD and ODD (Oppositional Defiant Disorder) and SPD (Sensory Processing Disorder). This last one is the trickiest of all, if you ask me. I'm not an expert, I wish I were.
Well, I am a worrier. I'll thank my Momma for that. So I did what I should never do, I googled it. I googled his medicine and possible side effects. Turns out the one for mood swings could actually cause mood swings, how counter-productive, I thought. Plus, I had this horrible feeling that he shouldn't be on medicine so young. The doctor gave us a speech of how the one medicine could build in his system and cause liver damage so it was really important to watch his levels. One blood test was done, (Which took an hour, mind you. Screaming, holding down, threats of vomit, 3 different people trying. BAD DAY.) and then never again. So when we started moving away from that doctor, we also started moving away from the medicine. We had to try and see if his actions were just an age thing and maybe he would be better.
He went for his preschool screening. Funny, funny day. You cannot speak down to Jake. Do not speak to him like you would a 'normal' young child. He feels belittled and will shut you out completely. So when we walked into that building and the woman got down on his level and in her most sugary-sweet voice said, "Do you wanna come play with me??" Mistake. Big one. Bad lady. He put his little hands on his little hips, cocked his head, looked at her, looked at me, then back at her and with this annoyed voice said, "Sure." I wait in the room while they do all their testing, I hear no random screaming, so I decide it must be going well. They come out and ask me to follow them to discuss his results. We go to a room with another parent/child/teacher and he played while we talked. Out of a possible 100 he scored 41. The reason? According to the woman, "He just wouldn't answer hardly anything for us. He wouldn't try to say his alphabet, he wouldn't try to count." Really? Your lady pissed him off. Excuse my language. Oh well, it was a low enough score that he didn't have to go on a waiting list for a spot in pre-k this year. Our school is small enough that there aren't spaces for all kids in pre-k. They take the lowest and start there, with a few slots for mentor students that score high and behave well. We walk out of the building, him holding my hand, glad to be leaving. He looks up at me before we get to the car and says, "Momma, those women were so stupid." I know, he was 4, he shouldn't talk about adults like that. But in his mind, when she decided to speak to him like a baby, she was stupid. So he wasn't going to do anything she wanted and he didn't!
While the woman and I discussed him, he got into a few arguments with the other little boy. She asks me, as politely as possible if we have thought about taking him to the Thompson Center for Autism and Neurodevelopmental disorders in Columbia, MO. I say, "No, but I will call them if you suggest it." A day or 2 later I have papers being sent in the mail to fill out to start the process of scheduling an autism screening. I'm not talking a little paperwork...26 pages, front and back. If you are facing this situation yourself, I advise you to get an ink pen that has a cushion on it because you will be filling out more paperwork than ever before in your lifetime. Then they put us on the waiting list and we wait, for months. Closer to time, they send more paperwork. The same questions. I guess they just want to make sure you are telling the truth. Even closer, phone interview. Same questions. DUMB questions. "Is there anyway your child could be pregnant? Does he leave school often? Does he use any illegal drugs?"....HE IS A 5 YEAR OLD BOY! NO!
October 17, 2011--The big day. 2 hour trip. 6 hours of testing. Not medical, all behavioral. Diagnosis...Severe Combined type ADHD. He is overly impulsive, inattentive and hyperactive. He will be worse as a teenager. (This scares me still.) He is placed on Guanfacine 1 mg twice daily. It helps for a while, we are hopeful. Our insurance does not cover like we were informed it would, we now owe them $1900 and cannot afford to return to see their pediatricians. So we started looking for a new one. Took forever, but we finally found her.
About 1 month ago, he started having problems. He became violent, easily angered, malicious, downright frightening sometimes. He would say things that no 5 year old should know to say. He threatened to burn our house down with myself and his little brother in it. He would hit, throw things, scream,..not words, just AHHHHHHH until he ran out of breath. He'd cry, for no reason, just cry. Something was wrong. This was not my baby. I wanted him back, I felt like I had lost him. I cried, so so much. I was slipping into a depression, all I felt like doing was crying or sleeping. I didn't care if my house was clean as long as my kids had clothes that were clean to wear, I didn't care if the laundry was done. I felt useless, like I was drowning. He was drowning and was in essence, taking me with him. It wasn't his fault. I know it wasn't. But I started to resent him. This is the part that is hard to talk about. I feel so utterly guilty. My mom asked me one day, "Well, you wouldn't give him back would you?" I actually said to her, "They won't let you." I didn't say No. I was without hope. Things would never be normal, this was my life. Non-stop fights, violence, threats of harm. He never wanted any sort of affection anymore. Nothing seemed to make him happy. He was hurting the animals and his little brother regularly. And I couldn't fix him. His actions were causing fights between my husband and I because we didn't know what to do with him so we either did nothing or the wrong things. I googled possible side effects and found that in rare cases the medicine he was on has caused these types of moods/actions. I stopped his medicine, immediately. Within 2-3 days he was so hyper he was just insane. Non-stop insanity. But...he wasn't violent. He wasn't always angry. Just a little wacky. This is when the no-sleep started. No medicine=no sleep.
The day came that we finally got to visit the new pediatrician. I absolutely loved her. We spent over an hour in her office talking to her about everything. Any question we had, she answered before we could voice it. She let him be crazy in her office without being rude to him because she understood he couldn't help it. At the Thompson Center they just shrugged off the idea of Sensory Processing Disorder. She said that he has Severe ADHD and A LOT of sensory issues. All of the things he does that scared me because they are traits of children with autism..they are all because his body is seeking some sort of sensory input that it isn't getting. If you don't know much about SPD, it doesn't make sense, but I will explain it at a later date. In essence, his brain is wired differently. Most people like to be hugged, it gives them a feeling of calm and security. It hurts children like Jake. But he likes Firm, constant, constrictive pressure. He doesn't know he likes it, but his body does. He fights it because it calms him. She acknowledged it when so many don't. She prescribed Intuniv again. The medicine he was on is a variation of the generic of Intuniv, but is not the same. Very few side effects and it is time-release. Also, she said if we can figure out how to get insurance to pay, she will put him back in Occupational Therapy. I pray we can.
He has now been on the medicine for 3 days and I swear there is a difference already. He isn't calm but he is calmer. He fights sleep still but eventually gives in and rests. I am, once again, hopeful. I see a light at the end of the tunnel that wasn't there a week ago. She recommended a book called 1-2-3 Magic which I have read and we are now trying to implement. I can breathe again. Not normally yet, but a little better.
Please, if you have anything you want to ask me, I will try to answer. tracey-sloan@hotmail.com
As stated in the background post, this is not a new development. We've been dealing with everything since Jake was fairly young. I think we discussed medication with the doctor the first time when he was about 3. He had been going to speech therapy for a while and the therapist recommended that we try occupational therapy. (By the way, if your child is like Jake and you can get some Occupational Therapy going, DO IT. Their tactics seem insane but help.) After doing OT for a while his therapist asked if we had ever thought about medication because he wasn't getting as much out of his sessions as he could if he were able to focus even a little.
I was anti-medication for someone so young. I still have moments where I feel guilty. But then I think of how 'dysfunctional' his daily life was without it. The doctor we saw at that point laid a lot of blame on me. He advised us that we should make a wooden paddle, wide and flat with a handle. When he acted up we were to spank him on the bottom with it and if he wasn't crying when done then we didn't do it hard enough and needed to do it again. Then hang it on the wall where he could see it and it would be a constant reminder to act appropriately. I cried, A lot and told him I wouldn't. He said he wouldn't get better because he already knew at 3 that I was a push-over. I asked him what was I to do when he told someone we beat him with a paddle and they called child protective services on us. He said, "Give them my phone number." We stopped seeing him shortly afterward. He was on Intuniv 2 mg and Divalproex 125 mg twice daily for mood swings. The doctor had him diagnosed as ADHD and ODD (Oppositional Defiant Disorder) and SPD (Sensory Processing Disorder). This last one is the trickiest of all, if you ask me. I'm not an expert, I wish I were.
Well, I am a worrier. I'll thank my Momma for that. So I did what I should never do, I googled it. I googled his medicine and possible side effects. Turns out the one for mood swings could actually cause mood swings, how counter-productive, I thought. Plus, I had this horrible feeling that he shouldn't be on medicine so young. The doctor gave us a speech of how the one medicine could build in his system and cause liver damage so it was really important to watch his levels. One blood test was done, (Which took an hour, mind you. Screaming, holding down, threats of vomit, 3 different people trying. BAD DAY.) and then never again. So when we started moving away from that doctor, we also started moving away from the medicine. We had to try and see if his actions were just an age thing and maybe he would be better.
He went for his preschool screening. Funny, funny day. You cannot speak down to Jake. Do not speak to him like you would a 'normal' young child. He feels belittled and will shut you out completely. So when we walked into that building and the woman got down on his level and in her most sugary-sweet voice said, "Do you wanna come play with me??" Mistake. Big one. Bad lady. He put his little hands on his little hips, cocked his head, looked at her, looked at me, then back at her and with this annoyed voice said, "Sure." I wait in the room while they do all their testing, I hear no random screaming, so I decide it must be going well. They come out and ask me to follow them to discuss his results. We go to a room with another parent/child/teacher and he played while we talked. Out of a possible 100 he scored 41. The reason? According to the woman, "He just wouldn't answer hardly anything for us. He wouldn't try to say his alphabet, he wouldn't try to count." Really? Your lady pissed him off. Excuse my language. Oh well, it was a low enough score that he didn't have to go on a waiting list for a spot in pre-k this year. Our school is small enough that there aren't spaces for all kids in pre-k. They take the lowest and start there, with a few slots for mentor students that score high and behave well. We walk out of the building, him holding my hand, glad to be leaving. He looks up at me before we get to the car and says, "Momma, those women were so stupid." I know, he was 4, he shouldn't talk about adults like that. But in his mind, when she decided to speak to him like a baby, she was stupid. So he wasn't going to do anything she wanted and he didn't!
While the woman and I discussed him, he got into a few arguments with the other little boy. She asks me, as politely as possible if we have thought about taking him to the Thompson Center for Autism and Neurodevelopmental disorders in Columbia, MO. I say, "No, but I will call them if you suggest it." A day or 2 later I have papers being sent in the mail to fill out to start the process of scheduling an autism screening. I'm not talking a little paperwork...26 pages, front and back. If you are facing this situation yourself, I advise you to get an ink pen that has a cushion on it because you will be filling out more paperwork than ever before in your lifetime. Then they put us on the waiting list and we wait, for months. Closer to time, they send more paperwork. The same questions. I guess they just want to make sure you are telling the truth. Even closer, phone interview. Same questions. DUMB questions. "Is there anyway your child could be pregnant? Does he leave school often? Does he use any illegal drugs?"....HE IS A 5 YEAR OLD BOY! NO!
October 17, 2011--The big day. 2 hour trip. 6 hours of testing. Not medical, all behavioral. Diagnosis...Severe Combined type ADHD. He is overly impulsive, inattentive and hyperactive. He will be worse as a teenager. (This scares me still.) He is placed on Guanfacine 1 mg twice daily. It helps for a while, we are hopeful. Our insurance does not cover like we were informed it would, we now owe them $1900 and cannot afford to return to see their pediatricians. So we started looking for a new one. Took forever, but we finally found her.
About 1 month ago, he started having problems. He became violent, easily angered, malicious, downright frightening sometimes. He would say things that no 5 year old should know to say. He threatened to burn our house down with myself and his little brother in it. He would hit, throw things, scream,..not words, just AHHHHHHH until he ran out of breath. He'd cry, for no reason, just cry. Something was wrong. This was not my baby. I wanted him back, I felt like I had lost him. I cried, so so much. I was slipping into a depression, all I felt like doing was crying or sleeping. I didn't care if my house was clean as long as my kids had clothes that were clean to wear, I didn't care if the laundry was done. I felt useless, like I was drowning. He was drowning and was in essence, taking me with him. It wasn't his fault. I know it wasn't. But I started to resent him. This is the part that is hard to talk about. I feel so utterly guilty. My mom asked me one day, "Well, you wouldn't give him back would you?" I actually said to her, "They won't let you." I didn't say No. I was without hope. Things would never be normal, this was my life. Non-stop fights, violence, threats of harm. He never wanted any sort of affection anymore. Nothing seemed to make him happy. He was hurting the animals and his little brother regularly. And I couldn't fix him. His actions were causing fights between my husband and I because we didn't know what to do with him so we either did nothing or the wrong things. I googled possible side effects and found that in rare cases the medicine he was on has caused these types of moods/actions. I stopped his medicine, immediately. Within 2-3 days he was so hyper he was just insane. Non-stop insanity. But...he wasn't violent. He wasn't always angry. Just a little wacky. This is when the no-sleep started. No medicine=no sleep.
The day came that we finally got to visit the new pediatrician. I absolutely loved her. We spent over an hour in her office talking to her about everything. Any question we had, she answered before we could voice it. She let him be crazy in her office without being rude to him because she understood he couldn't help it. At the Thompson Center they just shrugged off the idea of Sensory Processing Disorder. She said that he has Severe ADHD and A LOT of sensory issues. All of the things he does that scared me because they are traits of children with autism..they are all because his body is seeking some sort of sensory input that it isn't getting. If you don't know much about SPD, it doesn't make sense, but I will explain it at a later date. In essence, his brain is wired differently. Most people like to be hugged, it gives them a feeling of calm and security. It hurts children like Jake. But he likes Firm, constant, constrictive pressure. He doesn't know he likes it, but his body does. He fights it because it calms him. She acknowledged it when so many don't. She prescribed Intuniv again. The medicine he was on is a variation of the generic of Intuniv, but is not the same. Very few side effects and it is time-release. Also, she said if we can figure out how to get insurance to pay, she will put him back in Occupational Therapy. I pray we can.
He has now been on the medicine for 3 days and I swear there is a difference already. He isn't calm but he is calmer. He fights sleep still but eventually gives in and rests. I am, once again, hopeful. I see a light at the end of the tunnel that wasn't there a week ago. She recommended a book called 1-2-3 Magic which I have read and we are now trying to implement. I can breathe again. Not normally yet, but a little better.
Please, if you have anything you want to ask me, I will try to answer. tracey-sloan@hotmail.com
Saturday, March 3, 2012
Hyvee, I apologize.
*If you have a weak stomach, I apologize, read at your own risk!*
Yesterday (Friday) we had to go to a town about 45 minutes away to pay a bill. In this town there is a new, amazing Hyvee. It's a grocery store if you don't have them to know what it is. I am gluten free and our choices are limited in my small town of about 13,000. Hyvee has a fantastic selection so we decided to go there while we were in town.
The boys had eaten on the way so Jake had a nice, full stomach. He was having an okay day, but it got better when he saw the firetruck shopping cart. He and Charley are 'driving' along; Allen and I are looking in the meat counter; all is well. And then it happens: Jake starts randomly coughing. Tickle in the throat, beginning of a cold, allergies, I don't know, but NOT good. He keeps coughing. I am trying to convince him that he's good, to stop coughing. More coughing and then that first gag. Dang it. If you know my son well, you know that if he gags once, you are in trouble.
Well, I'm used to a different Hyvee and wouldn't you know it, they don't all have the same layout. The bathroom was not where it should have been. I am running toward the bakery, which is at the left of the store, from the meat department, which is at the back of store. Allen is yelling at me that the bathrooms are by the cash registers at the front of the store. Jake is gagging. I am going, "Just hold it! Mommy is hurrying!" He tried, God bless him. He really really tried. But I'm an idiot and ran to non-existent bathrooms.
After I realize there's nothing there but baked goods, I turn around and start running back the other direction, trying to find a way to the front. People need to learn not to block an entire isle while they are looking at horribly unhealthy snack cakes, by the way! I seem to have been running forever and I'm back at the meat counter. I see a trash can, I head that way.
Jake cannot hold it anymore and the vomit starts coming. SO much vomit. We literally left a trail probably 20-30 yards long. He is covered from his nose down, because it came out of his nose too. His shirt, shorts, socks, shoes....that poor firetruck cart... Luckily Allen grabbed Charley so he was clean. Jake is upset because he thinks I'm mad at him. I am reassuring him that it's okay and I'm so proud of him for holding it as long as he could and that I'm sorry I didn't get him to the trash can in time. By the way, No vomit made it into that trash can.
I go to the butcher, he gives me a roll of paper towels. Allen goes to the customer service desk and tells them of our 'incident' and they call for a janitor. I am cleaning Jake, people are walking through vomit. Do people not look where they are walking?! There is a trail of some odd looking liquid in the floor and it does not occur to you to dodge it? Really? I don't have the heart to tell them that their Sketchers Shape-Ups now have my child's vomit on them. I am cleaning Jake the best I can when it hits me that I don't have spare clothes in the car because I'm stupid like that. A janitor comes and 'cleans' the floor. I use that term very lightly because I did a better job with my portion of the floor using nothing but paper towels.
I inform Jake that I need him to stand up so I can get it off his legs because we can't go to the front of the store to leave until he isn't dripping anymore. I clean his legs and tell him to sit back down so I can get to his shoes. It is at this point that he makes me giggle. I love this little boy, he is a funny kid. He looks me squarely in the face and says, "Are you freakin serious?" I say, "Um, yes. Sit down so I can finish wiping you off." Jake again, "There is puke in this seat, I am NOT sitting back down." Me: "Have you looked at yourself? You have puke from the nose down, I don't think sitting in a little is going to hurt you." Jake: "IT IS COLD! I AM NOT SITTING IN IT!" I have to wipe the seat out before he will sit back down, covered in vomit.
We take the butcher his paper towels back and go to look for anything to put on him. They have Missouri State Bears shirts. $13.99 adult XL t-shirts that I will be putting on a child that wears a size 6/7. Oh well. It works. I take that poor, disgusting firetruck to the customer service desk, my child still utterly grotesque. I look at the man who has this horrified look on his face and say, without missing a beat, "We're the ones who threw up all over your store, where would you like for me to leave this cart because it needs cleaned." He says..."Um...there is fine." Jake and I head to the Jeep while Allen and Charley pay for his shirt.
Outside it occurs to me that we have no keys, it is cool and windy at this point, the doors are locked and he is wet from head to toe. He is walking like a penguin because it feels gross. I am holding his vomit covered hand. We have to wait for Allen to come unlock the door. He is yelling at me that is cold. I am explaining that I cannot break into the car. We get into the car and I find the baby wipes and fight him to keep him from getting into the car. He looks utterly bewildered that I will be stripping him down naked in between the doors of the Jeep and cleaning him in the parking lot. "What if people see me," he says, "These wipes are SCRATCHY!"
I clean him off the best I can with my available scratchy wipes and put his shirt on, to which he says, "I love my new shirt." I'm glad. That is what I was going for. He watches Cars in the backseat all the way home, curled up in his new, giant shirt. We get home and I get to play with vomit covered clothes and shoes because they have to be washed. I want to take a bath in Lysol, but I don't. I take a shower and go to bed. Jake does not. Allen gets to fight with him again because 5 year old boys don't need sleep now. I wake up with my 2 year old and 4 pound chihuahua in our king size bed...no husband. I go into the other room and find Allen and Jake both sleeping in a twin size bed, more of them hanging off than actually on it. I have to laugh.
Times are tough, always. But even in the bad, vomit covered times, you have to laugh at yourself and your situation when you can. It's better than crying because someone will still have to clean up the mess; you can do it through tears or giggles, your choice!
Yesterday (Friday) we had to go to a town about 45 minutes away to pay a bill. In this town there is a new, amazing Hyvee. It's a grocery store if you don't have them to know what it is. I am gluten free and our choices are limited in my small town of about 13,000. Hyvee has a fantastic selection so we decided to go there while we were in town.
The boys had eaten on the way so Jake had a nice, full stomach. He was having an okay day, but it got better when he saw the firetruck shopping cart. He and Charley are 'driving' along; Allen and I are looking in the meat counter; all is well. And then it happens: Jake starts randomly coughing. Tickle in the throat, beginning of a cold, allergies, I don't know, but NOT good. He keeps coughing. I am trying to convince him that he's good, to stop coughing. More coughing and then that first gag. Dang it. If you know my son well, you know that if he gags once, you are in trouble.
Well, I'm used to a different Hyvee and wouldn't you know it, they don't all have the same layout. The bathroom was not where it should have been. I am running toward the bakery, which is at the left of the store, from the meat department, which is at the back of store. Allen is yelling at me that the bathrooms are by the cash registers at the front of the store. Jake is gagging. I am going, "Just hold it! Mommy is hurrying!" He tried, God bless him. He really really tried. But I'm an idiot and ran to non-existent bathrooms.
After I realize there's nothing there but baked goods, I turn around and start running back the other direction, trying to find a way to the front. People need to learn not to block an entire isle while they are looking at horribly unhealthy snack cakes, by the way! I seem to have been running forever and I'm back at the meat counter. I see a trash can, I head that way.
Jake cannot hold it anymore and the vomit starts coming. SO much vomit. We literally left a trail probably 20-30 yards long. He is covered from his nose down, because it came out of his nose too. His shirt, shorts, socks, shoes....that poor firetruck cart... Luckily Allen grabbed Charley so he was clean. Jake is upset because he thinks I'm mad at him. I am reassuring him that it's okay and I'm so proud of him for holding it as long as he could and that I'm sorry I didn't get him to the trash can in time. By the way, No vomit made it into that trash can.
I go to the butcher, he gives me a roll of paper towels. Allen goes to the customer service desk and tells them of our 'incident' and they call for a janitor. I am cleaning Jake, people are walking through vomit. Do people not look where they are walking?! There is a trail of some odd looking liquid in the floor and it does not occur to you to dodge it? Really? I don't have the heart to tell them that their Sketchers Shape-Ups now have my child's vomit on them. I am cleaning Jake the best I can when it hits me that I don't have spare clothes in the car because I'm stupid like that. A janitor comes and 'cleans' the floor. I use that term very lightly because I did a better job with my portion of the floor using nothing but paper towels.
I inform Jake that I need him to stand up so I can get it off his legs because we can't go to the front of the store to leave until he isn't dripping anymore. I clean his legs and tell him to sit back down so I can get to his shoes. It is at this point that he makes me giggle. I love this little boy, he is a funny kid. He looks me squarely in the face and says, "Are you freakin serious?" I say, "Um, yes. Sit down so I can finish wiping you off." Jake again, "There is puke in this seat, I am NOT sitting back down." Me: "Have you looked at yourself? You have puke from the nose down, I don't think sitting in a little is going to hurt you." Jake: "IT IS COLD! I AM NOT SITTING IN IT!" I have to wipe the seat out before he will sit back down, covered in vomit.
We take the butcher his paper towels back and go to look for anything to put on him. They have Missouri State Bears shirts. $13.99 adult XL t-shirts that I will be putting on a child that wears a size 6/7. Oh well. It works. I take that poor, disgusting firetruck to the customer service desk, my child still utterly grotesque. I look at the man who has this horrified look on his face and say, without missing a beat, "We're the ones who threw up all over your store, where would you like for me to leave this cart because it needs cleaned." He says..."Um...there is fine." Jake and I head to the Jeep while Allen and Charley pay for his shirt.
Outside it occurs to me that we have no keys, it is cool and windy at this point, the doors are locked and he is wet from head to toe. He is walking like a penguin because it feels gross. I am holding his vomit covered hand. We have to wait for Allen to come unlock the door. He is yelling at me that is cold. I am explaining that I cannot break into the car. We get into the car and I find the baby wipes and fight him to keep him from getting into the car. He looks utterly bewildered that I will be stripping him down naked in between the doors of the Jeep and cleaning him in the parking lot. "What if people see me," he says, "These wipes are SCRATCHY!"
I clean him off the best I can with my available scratchy wipes and put his shirt on, to which he says, "I love my new shirt." I'm glad. That is what I was going for. He watches Cars in the backseat all the way home, curled up in his new, giant shirt. We get home and I get to play with vomit covered clothes and shoes because they have to be washed. I want to take a bath in Lysol, but I don't. I take a shower and go to bed. Jake does not. Allen gets to fight with him again because 5 year old boys don't need sleep now. I wake up with my 2 year old and 4 pound chihuahua in our king size bed...no husband. I go into the other room and find Allen and Jake both sleeping in a twin size bed, more of them hanging off than actually on it. I have to laugh.
Times are tough, always. But even in the bad, vomit covered times, you have to laugh at yourself and your situation when you can. It's better than crying because someone will still have to clean up the mess; you can do it through tears or giggles, your choice!
No sleep...ever.
For some reason, Jake is anti-sleep. He hasn't ever been a big napper, even when a baby. He doesn't sleep peacefully. He tosses, turns, wiggles, kicks, moans, groans and then there are the night terrors. If you haven't ever seen one of these in action, you'll think, "Oh a nightmare, that isn't so bad." NO. These are NOT your run-of-the-mill nightmare. Night terrors are insane. He looks like he is awake, firstly. It took us a while to realize he is still asleep. He will sit up, eyes open and start screaming random things, or just crying hysterically. There are usually random requests in the babbling. For the longest time he would scream for Mommy. I would go in there and he would freak out if I touched him and say, "NO! THE OTHER MOMMY!" At which point I would tell him that I am the only Mommy, but no, he didn't want me. He will scream to the point that he is coughing because he has asthma. Then, he throws up. If we are lucky we can usher him into the bathroom before this happens, but not always. I have cleaned up more vomit in Jake's lifetime than most janitors in a preschool. I'm over it now, it is just another thing he does. Doesn't even bother me at this point. But anyway, he kicks, screams, hits if you try to calm him. So you just run in there when he starts the hysteria, check to make sure a monster is not gnawing on his appendages, and then watch him to make sure he doesn't hurt himself. You'll be tempted to try to comfort him, but as he is asleep, it will either have no effect or upset him more. So, you just stand or sit and supervise the insanity. Then it stops. Just as suddenly as it starts, it stops and he crawls back under his covers and goes back to normal sleep. Until another one hits an hour later! Some nights it doesn't happen, sometimes just once, or sometimes it happens 4-5 times a night. It is horrid. I feel for anyone who has a child with these. They say kids grow out of them, I'm hoping for that day!
Lately, Jake has decided that he just doesn't need sleep. Wednesday night, I am pretty sure I learned what a nervous breakdown almost feels like. This came after HOURS of begging him to go to sleep. I snuggled him, I sat with him, I made him stand in time out. We gave him his Melatonin ( it is a natural sleep-causing medication for people like Jake who can't fall asleep. Totally safe and normally a life-saver!) but it did nothing. I might as well have given him a green M&M. He stood in time out. He screamed at me, laughed at me, kicked me. HE WOULD NOT SLEEP. He was up for about 36 hours without any sleep when he finally went to sleep. I don't understand how a child can just stop sleeping. At about 2:30 Thursday morning I was beyond exhausted. You might wonder why I was still up too? Well, you can't just let him stay up unattended. He has a habit of scavenging. He just looks for things to get into for no other reason than he can. He likes to get canned food and try to open it with knives. REAL, sharp, pointy knives. So, I stayed up with him because I'm afraid of what he might do otherwise. At 2:30 I started crying, because, well, that's what you do. Hysterically crying. Not that cute, tv cry that girls do. REAL, snot running, blotchy face crying. I couldn't breathe and ended up working myself into a fit until I threw up myself! It was not one of my best moments. What was Jakey doing while I did this? Watching me. He offered to go get Allen, my husband, but I told him that probably wasn't smart since it was 3 am and he was still up! His reasoning skills aren't the sharpest at this point. We went and stood in time out. He told me, "My feet hurt, I don't want to stand in this corner, it is the middle of the night! When is the sun coming up? Daddy should be going to work. Should I let the dogs out of their room? Harper just barked, maybe he needs time out..." He talks, a lot. I told him, "If your feet hurt, GO TO SLEEP!" Timeout didn't do much. Finally he wanted to lie on the couch, so he did and accidentally held still long enough to pass out. I say he was up for 36 hours, that is not entirely true. At about 4:30, he fell asleep and he slept for a bit. But it wasn't deep, healing sleep. It was wiggley, moany, restless sleep. I slept an hour at this point. He functions much better on no sleep than I do.
Thursday night...."I'm not tired. I don't want to go to sleep..." SERIOUSLY?! How can a child just NOT sleep? Luckily, Allen stayed up with him since he didn't have to work Friday, so I slept. He went to sleep easier for Allen, but it took a while and wasn't without a fight. Last night, different story. He finally fell asleep after 2. I again went to bed because my body doesn't function it turns out. I get crabby without some sleep. He will almost be asleep and then he will jerk his leg, poke himself in the eye, bite his fingers, rub his face, drop his woobie (dish towel that he has carried since he was a baby), fall out of bed, need to pee (12,000 times adds my husband). Then he talks, a lot. "I need cough medicine, I just coughed. Do we have cough medicine? NO? Are you sure we don't have any cough medicine? I need to pee. If you'll just turn my cartoons back on I'll go to sleep. I can't sleep with you watching me. Go to sleep and then I'll go to sleep. Get out of my bed, I can't stretch out. I need a new pull-up, this one hurts. I have a boo-boo on my leg and it hurts, do we have any Tylenol? My nose hurts. My eye itches. I have something in my hair. Can you go get Harper so I have someone to snuggle? Hold me. DON'T TOUCH ME! Hold me again. Get out of my space! Can I watch Gold Rush? I like when they pan for gold. Do you think we can go to Alaska and find gold? You know you can sell that stuff for a lot of money, right? How far away is Alaska? Can we drive the Jeep there? I think it's far, we would need lots of DVDs. Do you know Bigfoot has really big feet? I think that's why they call him that. Are you sure they don't make that beef jerky out of bigfoots? (Jack Links jerky has a picture of the tv commercial sasquatch on the label. He has decided that's what it's made of.) " He can babble about everything and nothing all at the same time for HOURS! Anything to stay awake.
So...apparently our new norm is no sleep. He has figured out a way to convince his body that sleep is optional so why waste valuable time doing it?!
Lately, Jake has decided that he just doesn't need sleep. Wednesday night, I am pretty sure I learned what a nervous breakdown almost feels like. This came after HOURS of begging him to go to sleep. I snuggled him, I sat with him, I made him stand in time out. We gave him his Melatonin ( it is a natural sleep-causing medication for people like Jake who can't fall asleep. Totally safe and normally a life-saver!) but it did nothing. I might as well have given him a green M&M. He stood in time out. He screamed at me, laughed at me, kicked me. HE WOULD NOT SLEEP. He was up for about 36 hours without any sleep when he finally went to sleep. I don't understand how a child can just stop sleeping. At about 2:30 Thursday morning I was beyond exhausted. You might wonder why I was still up too? Well, you can't just let him stay up unattended. He has a habit of scavenging. He just looks for things to get into for no other reason than he can. He likes to get canned food and try to open it with knives. REAL, sharp, pointy knives. So, I stayed up with him because I'm afraid of what he might do otherwise. At 2:30 I started crying, because, well, that's what you do. Hysterically crying. Not that cute, tv cry that girls do. REAL, snot running, blotchy face crying. I couldn't breathe and ended up working myself into a fit until I threw up myself! It was not one of my best moments. What was Jakey doing while I did this? Watching me. He offered to go get Allen, my husband, but I told him that probably wasn't smart since it was 3 am and he was still up! His reasoning skills aren't the sharpest at this point. We went and stood in time out. He told me, "My feet hurt, I don't want to stand in this corner, it is the middle of the night! When is the sun coming up? Daddy should be going to work. Should I let the dogs out of their room? Harper just barked, maybe he needs time out..." He talks, a lot. I told him, "If your feet hurt, GO TO SLEEP!" Timeout didn't do much. Finally he wanted to lie on the couch, so he did and accidentally held still long enough to pass out. I say he was up for 36 hours, that is not entirely true. At about 4:30, he fell asleep and he slept for a bit. But it wasn't deep, healing sleep. It was wiggley, moany, restless sleep. I slept an hour at this point. He functions much better on no sleep than I do.
Thursday night...."I'm not tired. I don't want to go to sleep..." SERIOUSLY?! How can a child just NOT sleep? Luckily, Allen stayed up with him since he didn't have to work Friday, so I slept. He went to sleep easier for Allen, but it took a while and wasn't without a fight. Last night, different story. He finally fell asleep after 2. I again went to bed because my body doesn't function it turns out. I get crabby without some sleep. He will almost be asleep and then he will jerk his leg, poke himself in the eye, bite his fingers, rub his face, drop his woobie (dish towel that he has carried since he was a baby), fall out of bed, need to pee (12,000 times adds my husband). Then he talks, a lot. "I need cough medicine, I just coughed. Do we have cough medicine? NO? Are you sure we don't have any cough medicine? I need to pee. If you'll just turn my cartoons back on I'll go to sleep. I can't sleep with you watching me. Go to sleep and then I'll go to sleep. Get out of my bed, I can't stretch out. I need a new pull-up, this one hurts. I have a boo-boo on my leg and it hurts, do we have any Tylenol? My nose hurts. My eye itches. I have something in my hair. Can you go get Harper so I have someone to snuggle? Hold me. DON'T TOUCH ME! Hold me again. Get out of my space! Can I watch Gold Rush? I like when they pan for gold. Do you think we can go to Alaska and find gold? You know you can sell that stuff for a lot of money, right? How far away is Alaska? Can we drive the Jeep there? I think it's far, we would need lots of DVDs. Do you know Bigfoot has really big feet? I think that's why they call him that. Are you sure they don't make that beef jerky out of bigfoots? (Jack Links jerky has a picture of the tv commercial sasquatch on the label. He has decided that's what it's made of.) " He can babble about everything and nothing all at the same time for HOURS! Anything to stay awake.
So...apparently our new norm is no sleep. He has figured out a way to convince his body that sleep is optional so why waste valuable time doing it?!
Thursday, March 1, 2012
Jake...the younger years
Now that I have given you a little back-story of how he came to be I will introduce you to him as a youngster.
He was your normal baby, although took time and effort with anything. It took him an hour to eat an ounce of formula because nursing was out of the question, he just wasn't having that. He had to go through several types of formula until we found one that didn't upset his system. But after the initial jaundice and feeding problems, we were good...for a while.
He spoke at an early age. And I'm not just talking about one word babbling. He used full sentences and was grammatically correct. He had, and still has, a better vocabulary than many adults that I know. He amazed people with how he spoke. He walked early, hit all his milestones either early or on schedule.
But then the differences start. He never really reacted to pain like a 'normal' child. Things that should have had him on the floor crying just seemed to be nothing. He would shake it off and roll right onto the next time he would hurt himself. He had to wear a cast on his ankle for 2 weeks when he was 3 because he did tendon damage and we didn't realize it. He just woke up one day and wouldn't walk. So after a lot of testing they realized that when he stepped off the curb wrong one evening and pulled the tendon wrong and was just going to keep injuring it without the cast to stabilize it. But if you were to 'flick him' on the arm, he would scream. He would run headlong into a wall, crash to the floor, giggle and go on. Barely touch his arm, screaming...grab his arm and squeeze, no problem. Something just wasn't right.
Hyper did not begin to describe him. Everyone told me it was just the Terrible Twos, the Awful Threes, etc. It would all wear off and he would calm down and be that functioning, thriving member of society that we all hope for. Well, I am here to tell you, it did not wear off. He is still that wild child. We tested the field of Occupational Therapy with some promising results, until the insurance would no longer cover it. End of hope for that one. Tried medication.
He would vomit daily, sometimes several times. He hated to have his teeth brushed, and it is still a daily battle. Textures freak him out. He won't eat unless he has a glass of something to wash down EVERY bite of food. Otherwise he will just chew until it is no longer a palatable texture, gag, spit it out and then throw up. He did damage to the enamel on his teeth by vomiting so often. He had to go to a dentist specializing in children with additional needs. (Which, by the way, he did wonderful with. He colored while they did his extensive dental work. He was a rock star and was rewarded with a guinea pig. Don't ever do that, I speak from experience. They stink and don't really do much.)
Sounds that are too loud or out of the ordinary upset him or excite him. He will run and scream this high pitched scream in little short burst. "Whoop Whoop Whoop Whoop." NON-STOP. He wants to play with other kids, but generally he gets over stimulated, resulting in the running, Whoop whoop thing. They will be playing and he will just be making laps, screaming. He rocks. Back and forth when nervous. He stims...repeated movements, the same one, arm swinging usually, for 30 minutes at a time.
He hates crowds, they make him nervous. He will pull himself into his shirt like a timid turtle and rock, humming or singing to himself. Sometimes VERY loudly. Wal-Mart used to upset him the most. He would spend the entire trip in the cart, pulled in like a turtle, making loud noises to himself. It is at this point that I would like to say that people are very rude and judgmental. My 5 year old has been given looks that I would not shoot at an adult, just for doing this in Wal-Mart. Not hurting anyone, just calming himself. But people don't understand so they say and do stupid things. I am not in a place yet that I can just ignore these people. That Mommy instinct in me really makes me want to put them in their place. Anyway...back to my Jake. He gets 'itchy' when nervous. He will start scratching himself all over, saying, "I itch so much. I just itch." repeatedly. There was an incident in a Mexican restaurant on his birthday. They sang to him and put a sombrero on his head and whipped cream on his face. He scratched himself until there were red marks on his body and face, growled slightly at people and then said he was never going back there. He has though because he loves the beans and rice.
In October of 2011 we took him to a university hospital specializing in Autism and Neurodevelopmental Disorders for testing. After 6+ hours of 'testing'..and I use this term lightly...and a bill of $1900, they said he makes eye contact and smiles sometimes so an Autism Spectrum diagnosis was out of the question. Apparently all the odd quirks he has are just null and void because he would occasionally look at the woman asking him questions or watching him play with a car and shoelace. There was NO medical testing done at this center, only behavioral. They watched his reactions to situations and asked him questions. They asked us questions. I would personally think my information regarding him would be more useful since I went in with a notebook full of incidents that happen daily. Not like I know the child or anything. But hey, I'm not a doctor, or a university student, so what do I know? So...our diagnosis: Severe Combined Type ADHD with a possibility of Oppositional Defiant Disorder. He's hyperactive, impulsive and inattentive. No joke. I really think there is something more there. There are too many things that don't tie in with that diagnosis.
They recommended medication, which we tried. He has been on it since October of 2011. At first I think it helped, but as of late, he has been having adverse reactions. He went from hyper and impulsive... (Here I think I should explain his degree of impulsiveness before you say, "Well all 5 year olds are impulsive." When he sees cars in the road, he doesn't think Danger, I could get hit. He thinks, Maybe I should go run with them. So he does. Mommy screaming and running behind him as he dodges cars in parking lots, laughing maniacally. Trying to open a can of Spaghettios with a knife, after he stood on the counter to get the knife. He just doesn't see danger the same way normal people do.) Anywho...He went from hyper and impulsive with the attention span of a gnat to all of these things as well as violent, combative, mouthy, dangerous to himself and his little brother, SO angry and overall emotionally unstable. This was not my baby. So we are seeing a new doctor tomorrow and I have stopped giving him his medicine until then. He is wild, wilder than ever before, and seemingly deaf to all instructions, reprimands, etc. But at least he isn't plotting my early demise.
I am so hoping for something amazing tomorrow. But I'm trying not to get my hopes up.
He was your normal baby, although took time and effort with anything. It took him an hour to eat an ounce of formula because nursing was out of the question, he just wasn't having that. He had to go through several types of formula until we found one that didn't upset his system. But after the initial jaundice and feeding problems, we were good...for a while.
He spoke at an early age. And I'm not just talking about one word babbling. He used full sentences and was grammatically correct. He had, and still has, a better vocabulary than many adults that I know. He amazed people with how he spoke. He walked early, hit all his milestones either early or on schedule.
But then the differences start. He never really reacted to pain like a 'normal' child. Things that should have had him on the floor crying just seemed to be nothing. He would shake it off and roll right onto the next time he would hurt himself. He had to wear a cast on his ankle for 2 weeks when he was 3 because he did tendon damage and we didn't realize it. He just woke up one day and wouldn't walk. So after a lot of testing they realized that when he stepped off the curb wrong one evening and pulled the tendon wrong and was just going to keep injuring it without the cast to stabilize it. But if you were to 'flick him' on the arm, he would scream. He would run headlong into a wall, crash to the floor, giggle and go on. Barely touch his arm, screaming...grab his arm and squeeze, no problem. Something just wasn't right.
Hyper did not begin to describe him. Everyone told me it was just the Terrible Twos, the Awful Threes, etc. It would all wear off and he would calm down and be that functioning, thriving member of society that we all hope for. Well, I am here to tell you, it did not wear off. He is still that wild child. We tested the field of Occupational Therapy with some promising results, until the insurance would no longer cover it. End of hope for that one. Tried medication.
He would vomit daily, sometimes several times. He hated to have his teeth brushed, and it is still a daily battle. Textures freak him out. He won't eat unless he has a glass of something to wash down EVERY bite of food. Otherwise he will just chew until it is no longer a palatable texture, gag, spit it out and then throw up. He did damage to the enamel on his teeth by vomiting so often. He had to go to a dentist specializing in children with additional needs. (Which, by the way, he did wonderful with. He colored while they did his extensive dental work. He was a rock star and was rewarded with a guinea pig. Don't ever do that, I speak from experience. They stink and don't really do much.)
Sounds that are too loud or out of the ordinary upset him or excite him. He will run and scream this high pitched scream in little short burst. "Whoop Whoop Whoop Whoop." NON-STOP. He wants to play with other kids, but generally he gets over stimulated, resulting in the running, Whoop whoop thing. They will be playing and he will just be making laps, screaming. He rocks. Back and forth when nervous. He stims...repeated movements, the same one, arm swinging usually, for 30 minutes at a time.
He hates crowds, they make him nervous. He will pull himself into his shirt like a timid turtle and rock, humming or singing to himself. Sometimes VERY loudly. Wal-Mart used to upset him the most. He would spend the entire trip in the cart, pulled in like a turtle, making loud noises to himself. It is at this point that I would like to say that people are very rude and judgmental. My 5 year old has been given looks that I would not shoot at an adult, just for doing this in Wal-Mart. Not hurting anyone, just calming himself. But people don't understand so they say and do stupid things. I am not in a place yet that I can just ignore these people. That Mommy instinct in me really makes me want to put them in their place. Anyway...back to my Jake. He gets 'itchy' when nervous. He will start scratching himself all over, saying, "I itch so much. I just itch." repeatedly. There was an incident in a Mexican restaurant on his birthday. They sang to him and put a sombrero on his head and whipped cream on his face. He scratched himself until there were red marks on his body and face, growled slightly at people and then said he was never going back there. He has though because he loves the beans and rice.
In October of 2011 we took him to a university hospital specializing in Autism and Neurodevelopmental Disorders for testing. After 6+ hours of 'testing'..and I use this term lightly...and a bill of $1900, they said he makes eye contact and smiles sometimes so an Autism Spectrum diagnosis was out of the question. Apparently all the odd quirks he has are just null and void because he would occasionally look at the woman asking him questions or watching him play with a car and shoelace. There was NO medical testing done at this center, only behavioral. They watched his reactions to situations and asked him questions. They asked us questions. I would personally think my information regarding him would be more useful since I went in with a notebook full of incidents that happen daily. Not like I know the child or anything. But hey, I'm not a doctor, or a university student, so what do I know? So...our diagnosis: Severe Combined Type ADHD with a possibility of Oppositional Defiant Disorder. He's hyperactive, impulsive and inattentive. No joke. I really think there is something more there. There are too many things that don't tie in with that diagnosis.
They recommended medication, which we tried. He has been on it since October of 2011. At first I think it helped, but as of late, he has been having adverse reactions. He went from hyper and impulsive... (Here I think I should explain his degree of impulsiveness before you say, "Well all 5 year olds are impulsive." When he sees cars in the road, he doesn't think Danger, I could get hit. He thinks, Maybe I should go run with them. So he does. Mommy screaming and running behind him as he dodges cars in parking lots, laughing maniacally. Trying to open a can of Spaghettios with a knife, after he stood on the counter to get the knife. He just doesn't see danger the same way normal people do.) Anywho...He went from hyper and impulsive with the attention span of a gnat to all of these things as well as violent, combative, mouthy, dangerous to himself and his little brother, SO angry and overall emotionally unstable. This was not my baby. So we are seeing a new doctor tomorrow and I have stopped giving him his medicine until then. He is wild, wilder than ever before, and seemingly deaf to all instructions, reprimands, etc. But at least he isn't plotting my early demise.
I am so hoping for something amazing tomorrow. But I'm trying not to get my hopes up.
Wednesday, February 29, 2012
A little background
Okay, I think it might be beneficial to give you a little information on how we got to this point. My husband and I were married in September of 2005. We immediately started trying for a baby; we knew we wanted them and why not have one while we were young enough to enjoy it. It took longer than I expected, not long by most standards, but several months. But it happened and we were ecstatic.
And then it all started. Morning sickness? NO. All the the time sickness and not just light. I lost 20 pounds. It never stopped. I had to take medicine to be able to drink anything, forget about eating. I had severe depression and was placed on Zoloft, which we will discuss at a later date. Then I got a migraine one day that wouldn't stop so I went to the local emergency room. Bad choice. They decided to give me an IV and some medicine for the pain and nausea. All good, except they blew out my vein and I ended up with a blood clot in my arm. Not one that would go away on its own either. I immediately had to start giving myself 2 shots a day of blood thinner or it could move and kill Jake and myself. It is a lot easier to give yourself a shot than you'd think! Three months later and it had dissolved and I was allowed to stop the shots. Then my blood pressure started spiking.
So I go to the doctor on November 15, 2006 and they say, "How do you feel about having a baby tomorrow?" Induction. Terrified, that's how I felt. But it would be okay, trained professionals and all that. Well, whatever. All those warnings they give you about epidurals...all the rare possibilities of problems...I had 'em. Took them 4 times to get it in the right place, HURT SO BADLY while they did it, and then the headache. I cannot even explain the headache. Instant vomit whenever I tried to sit up. And then the irony set in. I was induced due to high blood pressure. But now, my blood pressure was dropping. And so was Jake's heart rate. They gave me something for my blood pressure, twice. They had to massage Jake's head to keep his heart rate up while a doctor searched for a suction cup small enough, because come to find out he was 6 weeks early. Hindsight tells me that my epidural was all wrong. Nothing was right. I was SO tired, so sleepy, but I remember a conversation like yesterday. My mom looked at me and said, "Why don't you take a nap before it is time to have a baby?" I looked at her, and as serious as I've ever been in my life, replied with, "Because I'm afraid if I go to sleep I'll stop breathing and I'll die." And I really thought it to be true.
So 7 hours after the induction started, Jake was born, at 4:02 pm. And he was beautiful. (He still is, by the way.) Tiny, 6 pounds 4 ounces, but he lost weight, which is normal and left the hospital 2 days later weighing in at a whopping 5 pounds 14 ounces. He was high maintenance from the start. He "talked" to himself non-stop. While he slept, while he ate, when he was awake. Always. He liked how he sounded. I did too. He got jaundice and was roughly the color of a pumpkin. But he was healthy. He was mine and I loved him. He was difficult from the moment I knew of his existence. Really, before that. All those negative pregnancy tests. He was work from the start. Looking back, I think: I should have known we were headed down a difficult road.
And then it all started. Morning sickness? NO. All the the time sickness and not just light. I lost 20 pounds. It never stopped. I had to take medicine to be able to drink anything, forget about eating. I had severe depression and was placed on Zoloft, which we will discuss at a later date. Then I got a migraine one day that wouldn't stop so I went to the local emergency room. Bad choice. They decided to give me an IV and some medicine for the pain and nausea. All good, except they blew out my vein and I ended up with a blood clot in my arm. Not one that would go away on its own either. I immediately had to start giving myself 2 shots a day of blood thinner or it could move and kill Jake and myself. It is a lot easier to give yourself a shot than you'd think! Three months later and it had dissolved and I was allowed to stop the shots. Then my blood pressure started spiking.
So I go to the doctor on November 15, 2006 and they say, "How do you feel about having a baby tomorrow?" Induction. Terrified, that's how I felt. But it would be okay, trained professionals and all that. Well, whatever. All those warnings they give you about epidurals...all the rare possibilities of problems...I had 'em. Took them 4 times to get it in the right place, HURT SO BADLY while they did it, and then the headache. I cannot even explain the headache. Instant vomit whenever I tried to sit up. And then the irony set in. I was induced due to high blood pressure. But now, my blood pressure was dropping. And so was Jake's heart rate. They gave me something for my blood pressure, twice. They had to massage Jake's head to keep his heart rate up while a doctor searched for a suction cup small enough, because come to find out he was 6 weeks early. Hindsight tells me that my epidural was all wrong. Nothing was right. I was SO tired, so sleepy, but I remember a conversation like yesterday. My mom looked at me and said, "Why don't you take a nap before it is time to have a baby?" I looked at her, and as serious as I've ever been in my life, replied with, "Because I'm afraid if I go to sleep I'll stop breathing and I'll die." And I really thought it to be true.
So 7 hours after the induction started, Jake was born, at 4:02 pm. And he was beautiful. (He still is, by the way.) Tiny, 6 pounds 4 ounces, but he lost weight, which is normal and left the hospital 2 days later weighing in at a whopping 5 pounds 14 ounces. He was high maintenance from the start. He "talked" to himself non-stop. While he slept, while he ate, when he was awake. Always. He liked how he sounded. I did too. He got jaundice and was roughly the color of a pumpkin. But he was healthy. He was mine and I loved him. He was difficult from the moment I knew of his existence. Really, before that. All those negative pregnancy tests. He was work from the start. Looking back, I think: I should have known we were headed down a difficult road.
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