**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
Sunday, March 4, 2012
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.
Subscribe to:
Posts (Atom)