When you get the official word that you are, in fact, an autism parent you'll go through a myriad of emotions. You'll end up questioning everything. I'm serious, everything. Did I do something wrong? What do I do now? What does the future hold for my kid, my family? What do I need to know?
Here is my first tip for you, from my experience. Grow a thick skin. When you think it is thick enough, figure out a way to bulk it up because believe me it isn't. You will be shocked at some of things you have to endure. From your kid, yes. But that's not the most difficult part. People you don't know are going to give you their opinion, their expert advice. They'll know more than you. You will be in a comfortable place with decisions made, the way things are. Then they'll "enlighten" you and you'll be back at square one with the questioning. If you are lucky enough to have one of those autistic children that can function without medication, I envy you. Seriously, I'm jealous. I do not have one of those children. No medicating and he cannot function in everyday life. He was overwhelmed and we were drowning. It's not fair to him, it isn't fair to the people that are entrusted to care for him, teach him, etc. Not gonna work. If you are one of those parents that are faced with the decision to medicate or not, I'm sorry. It sucks, I hate it for you as much as I hate it for us. Because you are in a horrible position. You have to decide for your child if you are doing the best for them. And believe me, you are gonna hear about it. People I don't even know that have found out he is medicated have told me, flat out, that I'm wrong to medicate a child so young. Well, ya know what, it's good that he isn't your kid then, because life would suck a lot more for him if he was. It is the best decision for him, that's all there is to it. But people still tell you that you are wrong even though they don't know your life, your kid, your story. They have an opinion and think it is their right and their duty to tell you that opinion. WRONG! I don't want your opinion, and if I did, I would ask you for that opinion. (Just so you know, I don't usually ask, so Shhh.)
But here is the kicker. The part that is going to kill you. The people that you know and love are going to tell you that you are wrong too. They may be more tactful, but they are going to let you know that they disagree with your choice. And it is going to hurt. You already question what you are doing, daily, without the input of other people. And with that thick skin you have developed, you know how to shrug it off when a stranger is an uninformed, unaware idiot. But when it is a person that you know understands your struggles, and you know they understand the guilt you feel on a daily basis, you just take it for granted that they are going to stand by your decisions and be supportive, uncritical. You will be wrong. And when it happens, you are going to be defensive, mad, and later when you calm down you are going to be crushed.
This was my day. We had a much anticipated psychiatrist appointment. Jake is having a rough time, and so we are too. Something is so terribly off that he is struggling to function again. We have felt like we are back at the beginning for a few months now, just waiting for today when we can get to the bottom of it. By the way, you are going to lull yourself into a false sense of security on a regular basis too, just be ready for it. I went thinking that maybe a medicine needed adjusted or something similar. I quickly realized that was not the case. Jake has gained 8 and a half pounds and grown an inch and a half since October. He is a big guy, will be a big adult. When you medicate your child, be prepared for a life of adjustments, because as they grow, their medicine needs will change. They are bigger and require more. Their liver matures and their body metabolizes medicines quicker, thus they break through the dosages. So this is our life from here on out. Adjustments. So they changed the dosage on 2 medicines. Okay, I can deal with that. However, I was not prepared for the addition of another med. He is aggressive, he's angry, he's defiant. And it isn't his fault and he cannot fix it on his own. So it is our job to find the right balance of things so that he can control it. Welcome to parenthood, right? The new medicine is often used to treat bipolar disorder. Am I saying he's bipolar? Nope, I'm not because he's still little and that is something that would have to be diagnosed later in life. I am saying he has a mood disorder. This is something we knew. Well, that mood disorder is being mean right now. So we are going to help him with it, because it's not fair for him to be angry all the time. That anger feeds the aggression and then the defiance. So it makes life difficult for everyone involved in his care and mainly, for Jake.
Skip to a little later. I have come to grips with this because I fully trust his doctor. Something I didn't think would happen but I honestly do. I think he has his best interest in mind and is very knowledgeable. I get a phone call and relay our game plan to one of the most important people in my life. And spend the next ten minutes being told why I'm wrong. Why the doctor is wrong. How he's on too much medicine. How we needed to take the one medicine away, the one medicine that has helped him with social anxiety and given him the ability to speak to people. That one needs to go because it is causing his problems. I get pissed, but I sit there and I listen. I keep my cool regardless of what was said. I yelled one time. This person says they don't but they obviously question my ability to care for my own child. I never let this person know that I am upset. But now I sit at home and I cry because I am utterly crushed. One person that I expected to be in my corner, isn't. All the strangers in the world can tell me I'm wrong and I don't care. All those strangers in the world can tell me I'm right, and I don't care. Because apparently the people that matter think I'm wrong. So now I go back to questioning everything. Every. Single. Thing. Every decision I am making. Because what if I am wrong? He's 7, he doesn't get a choice, he just has to go with the ones we make. Why did God decide that I'm smart enough to make decisions for another person and what if he was wrong? If he was, then surely Jake will grow up, realize it, and resent me. So I'll cry, I'll get over it, I'll convince myself that I'm not wrong, that I'm doing the correct thing. And I'll fall back into that false sense of security, until something else happens and slaps me back to reality.
So take my advice, get a thick skin. Then when you think it's sufficient. Get a thicker one. You'll need it.
Friday, January 17, 2014
Monday, April 15, 2013
No Sugar Coating Today!
It's been a bit since I blogged, but today is the day! I am full of things that I need to get out, or risk my own sanity. Since I last wrote we got our letter from the neuropsychologist, who tested Jake for autism, as well as learning disabilities and memory issues. Diagnosis: PDD-nos. This means Pervasive Developmental Disorder, not otherwise specified. It is one of the classifications of ASD (Autism spectrum disorder)...the easiest way I have ever seen it explained is "atypical autism"...it doesn't mean high-functioning autism as it can have varying degrees of severity. It's not your classic autism, it isn't Aspergers. It is when a person displays some characteristics of autism, not all, but enough to be diagnosed as having autism. This is what we suspected and it's nice to know I'm not crazy. But it is maddening that it has taken multitudes of doctors and nearly 4 years to get someone to see it.
This will not be one of those happy, butterflies and rainbows kind of blogs. I'm over that! I'm gonna call it like I see it. I will explain the cause for today's mood shortly. If you can't handle straight-forward, no nonsense, blatant honesty from me, you should probably stop reading. Because I'm going to tell it like it is in my house. I don't speak for everyone because people with autism are just that, people with autism. Much like I'm not exactly like anyone else, being neurotypical, Jake is not like anyone else, being autistic. One person with autism is one person with autism. They vary like anyone else. So don't take offense if you are living the 'autism lifestyle' and I say something that differs from your view. I am me and I have my opinion and I'm glad other people see it differently because at this point, I wish I did.
First point I'm going to make...mainstream media. If you watch television or are exposed to any sort of mainstream media you have had autism shoved down your throat. The statistic just jumped from 1 in 88 children have some sort of ASD, to 1 in 50. Let me explain this to you. There has not been some rapid increase in cases because of some radical environmental change. They changed their way of counting. Before the last survey, researchers counted 8 year olds. That's it. Now they have broadened their parameters to include all school aged children, from 6 to 17. So of course the numbers changed. How can you expect to have accurate representation with such a small group being counted? So that's the change there. Also, the media isn't doing justice to autism in my opinion. All you hear are feel good stories about savants with autism. "This 6 year old boy with autism can play concert piano from memory"...Or you go directly opposite, claiming that a recent school shooting was done by someone who was on the spectrum, causing fear and paranoia towards the autism community. Let me tell you, those are the exception. Just as not all "Normal" people (And I rarely use the term normal because it implies abnormality in someone with autism. And autism is our normal. I usually go with neurotypical.) kill people, autism does not cause insane outbursts. It also does not mean there will be some beautiful mind with out-of-the-ordinary skills. Jake is not a savant. He cannot draw cityscapes from memory. He is not amazing at math. He can't play various instruments simply by picking them up. For the most part, he is a 6 year old little boy. I think, and this is me, that if people want change, then be truthful. You can't expect governmental change when all you hear are great stories. Tell the truth people. If there are problems with your children, tell them that. If you want change, people need to know that changes need to happen. If we pretend things are okay, why would anyone change them for us? Don't pretend things are super. I don't know why people do that anyway. Does it show weakness? Well, I'm weak. Things aren't super.
I'd like to share a picture with you...
I wear an autism bracelet. I have my autism tattoo. I love my son. I hate his autism, but I still want to raise awareness, not because I like it but because we live it. You can judge me, I'm fine with that. I've already been through it when I chose to put him on medication so he could at least function in daily life. I'm used to the stares when you see a little boy who looks "Normal" and appears to just be having a fit in Walmart. What you don't see is his severe anxiety with crowds, or the fact that someone was mean to him and didn't play with him earlier in the day, or that the lights hurt him, or someone is being too loud. You see someone who needs a spanking. Well, that's your problem. I have my own set of problems, I don't need your problems too.
This will not be one of those happy, butterflies and rainbows kind of blogs. I'm over that! I'm gonna call it like I see it. I will explain the cause for today's mood shortly. If you can't handle straight-forward, no nonsense, blatant honesty from me, you should probably stop reading. Because I'm going to tell it like it is in my house. I don't speak for everyone because people with autism are just that, people with autism. Much like I'm not exactly like anyone else, being neurotypical, Jake is not like anyone else, being autistic. One person with autism is one person with autism. They vary like anyone else. So don't take offense if you are living the 'autism lifestyle' and I say something that differs from your view. I am me and I have my opinion and I'm glad other people see it differently because at this point, I wish I did.
First point I'm going to make...mainstream media. If you watch television or are exposed to any sort of mainstream media you have had autism shoved down your throat. The statistic just jumped from 1 in 88 children have some sort of ASD, to 1 in 50. Let me explain this to you. There has not been some rapid increase in cases because of some radical environmental change. They changed their way of counting. Before the last survey, researchers counted 8 year olds. That's it. Now they have broadened their parameters to include all school aged children, from 6 to 17. So of course the numbers changed. How can you expect to have accurate representation with such a small group being counted? So that's the change there. Also, the media isn't doing justice to autism in my opinion. All you hear are feel good stories about savants with autism. "This 6 year old boy with autism can play concert piano from memory"...Or you go directly opposite, claiming that a recent school shooting was done by someone who was on the spectrum, causing fear and paranoia towards the autism community. Let me tell you, those are the exception. Just as not all "Normal" people (And I rarely use the term normal because it implies abnormality in someone with autism. And autism is our normal. I usually go with neurotypical.) kill people, autism does not cause insane outbursts. It also does not mean there will be some beautiful mind with out-of-the-ordinary skills. Jake is not a savant. He cannot draw cityscapes from memory. He is not amazing at math. He can't play various instruments simply by picking them up. For the most part, he is a 6 year old little boy. I think, and this is me, that if people want change, then be truthful. You can't expect governmental change when all you hear are great stories. Tell the truth people. If there are problems with your children, tell them that. If you want change, people need to know that changes need to happen. If we pretend things are okay, why would anyone change them for us? Don't pretend things are super. I don't know why people do that anyway. Does it show weakness? Well, I'm weak. Things aren't super.
I'd like to share a picture with you...
This is Jake, post meltdown. This is my face of autism. Post all the cute pictures of kids doing amazingly adorable things that you want. This is our reality. This was after a 30 minute meltdown that began because my husband, whose head you see, tried to put his shoes on. What actually caused the meltdown? We don't know what triggered it. Sometimes you know what causes it. He can be hungry, tired, over-stimulated, upset because of something that happened at school, mad at someone, who knows. But they usually consist of 20 minutes to an hour of crying, screaming, kicking, fighting, flailing, lack of control, he wants to be held, he doesn't want to be touched. He wants you near him, he wants you to go away. He has no control. His body and system are overwhelmed and he needs release. This is the only way he can cope with what's going on inside himself. And we are helpless, as is he. It is the most frustrating, horrific, sad, upsetting display you can witness. Rarely can you calm him down because you can't reason with him once it gets that far. Sometimes, if you are in-tune enough, you can see it coming and head it off, but not often. After he is done, his body is done. He usually cries himself to sleep. He is just spent. That's how this picture came to be. We have had multiple meltdowns because other kids won't play with him at school. That bothers him. Who wouldn't be bothered by that?! I'm bothered by it. Can I fix it? No. I can suggest to him that running around chasing other children is inappropriate. But why is it? Because other people decided it is. He is hurting no one. It gives him sensory input that his body craves. So he does it. Other kids don't get that and I can't make them at this age. This is not ALWAYS our reality, but it is part of it.
My current mood stems from my morning with Jake. He did not want to get out of bed, it's Monday, I didn't either. I got him up, gave him his medicine, and that was the end of our normal routine. He wanted cereal. I got him cereal. It was the wrong bowl and the wrong amount and I put it at the wrong seat. Normally, it doesn't matter. This morning it did. I sat out his clothes, which he normally puts on himself. I button his pants and tie his shoes, because he can't do that. Today he refused to do anything. He proceeded to lie face-down on the couch. I tried to dress him. He screamed, kicked, and took his shirt off 3 times and his pants twice. I was calm for a long time. He took his socks off, screamed more at me, and kicked me more. I know it wasn't the clothes. I have already taken the tags out, and I picked out the right socks. He was crying by this point. There is no reasoning with him when he gets to this place. I lost my cool and raised my voice while I was putting his shirt on for the 4th time. He screamed at me more, "YOU AREN'T ALLOWED TO YELL AT ME! I'M CALLING THE COPS AND THEY WILL TAKE YOU TO JAIL BECAUSE THAT'S WHERE YOU BELONG." I was done. I told him to get himself dressed and I would tie his shoes, that was all I was doing. If he felt the need to be late, then that was his choice, I wasn't taking responsibility for that. I was crying. He put a blanket in the floor, wrapped up in it like a burrito and laughed at me. So after about 20 minutes of screaming, melting-down violence toward me, we moved onto laughing at me. I can handle that; it only hurts emotionally. So he finally gets ready and we go to the car. He asks if we are going to see Grammy (my mom) after school and I tell him no, he had a bad morning so we wouldn't be seeing her, we would just come home. Stupid me. I should have ignored his question. Begin meltdown 2. He starts screaming and kicking the seat. He tells me, "Don't expect me to be waiting for you at the gate after school. I will sneak out with another class and I'll walk to Grammy's." I tell him, "You can't do that. It isn't safe. Someone could take you. We have talked about this, there are bad people that do bad things to kids out there." He laughs again, and says, "I'm not worried about it. I'm a ninja." NOW...you may laugh at this sentiment. But he really does think he is invincible. He has no fear. If someone tried to kidnap him, he really would believe he could fend them off. He has also started trying to roam again. Last week I chased him through the neighborhood 3 times in one evening. So I am actually fearful for him. And I don't know any other way to explain it to him. That is my reality.
Then there is the ridiculous amount of hoops we have had to jump through to even get to the right doctor to get the stupid diagnosis. We started at about age 3. He will be 7 in November. We have been to half a dozen doctors. Various therapies. An actual "autism center" which I use loosely because they were a joke, lied to us about our insurance and then sent us a bill for $1900, for doing NOTHING! He sat in a room and played with a college student while she asked him various questions and they ignored everything we told them. So nearly 4 years later we have finally found good doctors that know what they are doing and see what we have been living his entire life. And I see it all the time...people that say, "Oh my kid has autism."...that kid that can go anywhere and have no problems, that gets along with other kids, that sleeps, that eats anything, can wear any clothes, has friends, doesn't fight with you....that kid has autism? And it is shortly followed by, "they get SSI and Medicaid." Yep...there's the epidemic people should be so worried about. People that can work the system, manipulate doctors into a diagnosis, claim their kid has autism then get assistance for it! When people like us have to actively fight for anything! I don't want pity. Screw that. I just want to be able to get my kid the help he needs without having to do a song and dance every single time I ask for anything. That would be nice. But it's cool; I'll do it because that's what you do when you love your child. That child that doesn't hug me except on rare occasions. That kid that won't look me in the eye. That kid that can't make friends and cries about it for hours on end. That kid that can't eat numerous foods because the texture or taste makes him throw up. The one that doesn't sleep, still wears Pull-Ups at, night has night terrors where he screams for Mommy but then screams if I touch him. Can't stand for me to cut his fingernails, has to have every tag taken out of his clothes, wears his socks inside out because seams hurt. The kid that can't be in public places without having "itches" the make him scratch himself uncontrollably. The one that gets stuck repeating a phrase, line from a song, making a siren noise for hours at a time. THAT KID! That is my kid. Yep, I love that kid. I hate all the shit that goes with it. I want my kid. I want to be able to take all the other away and just have Jake. But that won't happen.
Here's the deal...I love Jake with every fiber of my being. But I am scared for him. I am scared for me sometimes. Not because I fear him. I can take anything he can dish out. I fear the world we live in, the stereotypes, what the future holds for him. I fear what the future holds for other kids like him. What if the things I do aren't enough and he isn't prepared for what life throws at him? If I fail then I set him up to fail. And he won't realize it is my failures; he will see that he is failing. And let's just say it...this autism thing sucks. For so long I have been desperate to hear the words, "Your child has autism." Well, I got em. Did it help? Not thus far. Will it eventually? Probably. We know what direction to go in. Is that an easy direction? For so many reasons, no. You can say that taking away his autism would change the person he is. I don't believe it. He would still be Jake. He would just be Jake that can make friends, go into public places, wear socks correctly, eat whatever he wants, sleep... He'd be Jake, just easier. And that's just not fair. And it isn't fair that he will have to learn at such an early age that life is unfair. That he is different from what society deems normal. That he will have struggles that the vast majority never face. That just stinks. And I know we are lucky. He is healthy by all standards. But you know, that doesn't make it any easier or more fun.
Thursday, February 21, 2013
FINALLY! A step in the right direction?
Hello readers! So obviously it has been months since my last entry. Largely things have been the same. Good days, bad days. Little triumphs followed by back -sliding. We had Jake's parent/teacher conference and confirmed that he is behind academically. This is nothing we didn't know already. He only knew a few of his letters, couldn't recognize most of his numbers, knew about 12/54 sight words... So after asking since last year, during preschool, they finally decided it was time to test him for special services. Months later, they schedule our meeting to discuss/create his IEP (Individualized Education Plan). The first meeting didn't go as planned. Neither of us were prepared and I left in a haze with tears in my eyes, feeling like I had accomplished nothing. He qualified for an IEP based on "Other Health Impairment." He met some of the qualifications for an educational autism diagnosis, but apparently it was easier to classify him OHI. Whatever. Not the important part. So I mentioned it to his wonderful teacher and another meeting was scheduled for a week later. This time we were all prepared and my husband was off work and got to attend. We left with a rough draft of an IEP, stating he would get speech services twice a week for a stutter, and 30 minutes a day with the special education teacher, to work on whatever his teacher deems important at the time. He has about 8 goals that will be assessed annually.
During this time we were also waiting to go see the neuropsychologist. His psychiatrist noticed things that lead him to believe he is on the autism spectrum, like we have been saying for years. We changed his medicine because he was regressing and we weren't willing to let that happen. He had been much happier, less aggressive, more attentive, etc. and was getting back into a funk. So we went to 0.2 mg of Kapvay twice a day, 5 mg of Abilify once a day, and and changed his Focalin XR 10 mg to Vyvanse 20 mg once daily. I think he is still adjusting, it has been a couple weeks now and he still seems a little sleepy during the day. He had been having more sleep disturbances as well, so that could be part of it. But his doctor asked us to please give it a little time to adjust before we called it quits like a lot of people do. So that's what we are doing. He does seem much calmer in the afternoons, which was an issue before. He goes to bed without Melatonin still, another plus. So...anyway. We went to the neuropsychologist upon request of his psychiatrist. Geez, there are a lot of letters in those few words of that previous sentence! Met him and he was super nice; he had Legos so that won him some brownie points with Mr. Jake. Legos are currently one of his preoccupations. Set up a time to go back about a week later for testing. We wanted to check for autism spectrum disorders, an expressive/receptive language disorder and his memory skills. That was a really long day! He met first for testing, then we had an appointment with his psychiatrist and ended the day with a visit to a new child psychologist to address some skills he is lacking. While on that subject I will explain one of those areas of deficit.
Jake is lacking in the social area considerably. He wants to play with other kids, but doesn't understand the 'how to' aspect. We recently made a trip to McDonald's and he wanted to sit in the play place. Normally he would have his little brother with him to play, but on this day he was with a family member, so the only available kids were strangers. He still wanted to play with them. Logic says: You go up, introduce yourself and ask if you can play...or at least you just join them and start playing; kids are usually okay with that. However, Jake doesn't get that. He followed them around at a distance far enough to be "safe" but close enough that he felt he was participating. He never spoke to them. Never played with them. Just followed with an awkward "smile" on his face. He almost looked pained. Well, this lasted about 10 minutes and he could tell something wasn't right and abandoned that tactic. He decided instead to sit inside the giant tree and growl at the other children as they went past him to get to the slide. After 5 minutes we couldn't take it and asked him if was okay to leave and he quickly got his shoes and we left. If he had been having fun he wouldn't have wanted to leave. This isn't an isolated incident. He rarely tells me anything about his school day. With some prying I can usually figure out what he had for lunch, if he ate breakfast, and if he or anyone else got into trouble. That's it. One day he came home and was obviously upset. I'm pretty sure we had a meltdown before we left the parking lot of the school. Screaming, crying, throwing of his shoe for no apparent reason. We got home and I begged him to tell me what was wrong and he blurts out, amidst tears, "NOBODY WILL PLAY WITH ME AT RECESS!" So that was the cause of the meltdown that day. From what he says I picture his recess going something like this: He finds a random little girl or two, because he and little boys seem to have more struggles playing, and he chases them. All recess long....he runs and chases them. He said sometimes he tries to get them to chase him but they don't. I have suggested the swings. Nope. Slide? Nope. Maybe a ball? No thanks. Just running after random little girls. He would rather be around adults. If you bring up the right subject (one that he finds interesting) he will talk to you non-stop until you change the subject to something not Jake-approved. His teacher has mentioned that he will follow her around, all the while she is trying to convince him to return to his seat, and let her know of things that are awry. Heaven forbid there is a change in routine, or something is out of place, or someone isn't doing what he thinks they are supposed to be. If these things happen, he will follow her around telling her what is wrong and that it needs to be righted. Anyway...back to the point....
Today we had an appointment to meet and get the results of his testing...51 miles away...during winter storm Q. Yeah. Super. Luckily his doctor called and said he didn't want us driving in the weather, and we could just have a phone conference instead. I was going to walk 51 miles in the sleet to get there because we have been waiting 3 weeks for these results. We have been desperate for someone to validate our suspicions, but no one would. We went to a respected center for autism and were told just ADHD. You cannot convince me that the things he does are 'just ADHD'. Not true. So let's just keep adding letters after his name. Jake ADHD, ODD, SPD, mood disorder. Or we could do like Mommy says and give him the right diagnosis of autism spectrum disorder, which would, in effect, encompass everything he does. But no, no one would do that. Until his psychiatrist. He just kept saying, "I just don't think I am wrong. I fully believe that he on the spectrum." So why doesn't his opinion count? I asked. It does, but it is a lot less disputable if you have testing to back it up. Hence our trip to the neuropsychologist. He could give us that. So he calls today. Jake's memory skills are fine. It takes him some time to recall information sometimes but it is average to 'better than average.' They also did testing regarding his attention. His results were 'atypical'. Apparently it was on a computer and you were NOT supposed to click the X. He clicked lots of those. So he said his attention was an issue. Okay, yeah, I get that. Then he says, "Regarding the autism testing...." and I think I stopped breathing... "I do believe that he has an autism spectrum condition. More towards the mild end of the spectrum than the severe." He then tells me he understands that is difficult to hear and I replied, "No, we are good with that." I would like to clarify. We were not wishing for this. It was just something we knew to be true. But when people tell you constantly that you are wrong, you start to question yourself. Plus we have lived with his mannerisms for 6 years now. So you start to wonder, "Maybe this is normal? Maybe we are being nit-picky. Maybe they are right and we are wrong?" But then you go somewhere else and you fill out another evaluation and you are like, "Yep, these things he does are not typical behavior." So I explain that we have thought this since he was 3 years old, and no one would validate us and we were so desperately searching for someone to give us that validation. He agreed that it is frustrating for parents to see things that no one else gets a chance to see, and then those things be dismissed because the doctors/teachers/professionals didn't witness them personally. You have no idea how true that one is. He also said that once you get enough pairs of eyes on a child, they will eventually see things that point them in the right direction. And once they start seeing the same things, you can't dispute them.
So now we have a vague idea of his diagnosis. He is going to write his final report, complete with diagnosis and recommendations and mail it to us. We can then read his findings in depth and share them with his school. I'm not an autism expert. I have read countless articles and sources regarding it, but I still know nothing. I don't know if autism spectrum disorder, toward the mild end is a diagnosis. Or if there is a specific classification within that. When I am filling out forms that ask for his conditions, what do I put? Do I just put autism? I didn't think to ask that when I had him on the phone. So we are getting somewhere, I think. We just aren't completely there yet. I don't think we will ever 'get there' in all actuality. Where is "there"? I'm not one of those people that believe you can cure autism. But I do think you can work with it. We have just been searching for someone to see what we do and lead us in the right direction to help Jake. So maybe we are headed in the right direction. I hope....
During this time we were also waiting to go see the neuropsychologist. His psychiatrist noticed things that lead him to believe he is on the autism spectrum, like we have been saying for years. We changed his medicine because he was regressing and we weren't willing to let that happen. He had been much happier, less aggressive, more attentive, etc. and was getting back into a funk. So we went to 0.2 mg of Kapvay twice a day, 5 mg of Abilify once a day, and and changed his Focalin XR 10 mg to Vyvanse 20 mg once daily. I think he is still adjusting, it has been a couple weeks now and he still seems a little sleepy during the day. He had been having more sleep disturbances as well, so that could be part of it. But his doctor asked us to please give it a little time to adjust before we called it quits like a lot of people do. So that's what we are doing. He does seem much calmer in the afternoons, which was an issue before. He goes to bed without Melatonin still, another plus. So...anyway. We went to the neuropsychologist upon request of his psychiatrist. Geez, there are a lot of letters in those few words of that previous sentence! Met him and he was super nice; he had Legos so that won him some brownie points with Mr. Jake. Legos are currently one of his preoccupations. Set up a time to go back about a week later for testing. We wanted to check for autism spectrum disorders, an expressive/receptive language disorder and his memory skills. That was a really long day! He met first for testing, then we had an appointment with his psychiatrist and ended the day with a visit to a new child psychologist to address some skills he is lacking. While on that subject I will explain one of those areas of deficit.
Jake is lacking in the social area considerably. He wants to play with other kids, but doesn't understand the 'how to' aspect. We recently made a trip to McDonald's and he wanted to sit in the play place. Normally he would have his little brother with him to play, but on this day he was with a family member, so the only available kids were strangers. He still wanted to play with them. Logic says: You go up, introduce yourself and ask if you can play...or at least you just join them and start playing; kids are usually okay with that. However, Jake doesn't get that. He followed them around at a distance far enough to be "safe" but close enough that he felt he was participating. He never spoke to them. Never played with them. Just followed with an awkward "smile" on his face. He almost looked pained. Well, this lasted about 10 minutes and he could tell something wasn't right and abandoned that tactic. He decided instead to sit inside the giant tree and growl at the other children as they went past him to get to the slide. After 5 minutes we couldn't take it and asked him if was okay to leave and he quickly got his shoes and we left. If he had been having fun he wouldn't have wanted to leave. This isn't an isolated incident. He rarely tells me anything about his school day. With some prying I can usually figure out what he had for lunch, if he ate breakfast, and if he or anyone else got into trouble. That's it. One day he came home and was obviously upset. I'm pretty sure we had a meltdown before we left the parking lot of the school. Screaming, crying, throwing of his shoe for no apparent reason. We got home and I begged him to tell me what was wrong and he blurts out, amidst tears, "NOBODY WILL PLAY WITH ME AT RECESS!" So that was the cause of the meltdown that day. From what he says I picture his recess going something like this: He finds a random little girl or two, because he and little boys seem to have more struggles playing, and he chases them. All recess long....he runs and chases them. He said sometimes he tries to get them to chase him but they don't. I have suggested the swings. Nope. Slide? Nope. Maybe a ball? No thanks. Just running after random little girls. He would rather be around adults. If you bring up the right subject (one that he finds interesting) he will talk to you non-stop until you change the subject to something not Jake-approved. His teacher has mentioned that he will follow her around, all the while she is trying to convince him to return to his seat, and let her know of things that are awry. Heaven forbid there is a change in routine, or something is out of place, or someone isn't doing what he thinks they are supposed to be. If these things happen, he will follow her around telling her what is wrong and that it needs to be righted. Anyway...back to the point....
Today we had an appointment to meet and get the results of his testing...51 miles away...during winter storm Q. Yeah. Super. Luckily his doctor called and said he didn't want us driving in the weather, and we could just have a phone conference instead. I was going to walk 51 miles in the sleet to get there because we have been waiting 3 weeks for these results. We have been desperate for someone to validate our suspicions, but no one would. We went to a respected center for autism and were told just ADHD. You cannot convince me that the things he does are 'just ADHD'. Not true. So let's just keep adding letters after his name. Jake ADHD, ODD, SPD, mood disorder. Or we could do like Mommy says and give him the right diagnosis of autism spectrum disorder, which would, in effect, encompass everything he does. But no, no one would do that. Until his psychiatrist. He just kept saying, "I just don't think I am wrong. I fully believe that he on the spectrum." So why doesn't his opinion count? I asked. It does, but it is a lot less disputable if you have testing to back it up. Hence our trip to the neuropsychologist. He could give us that. So he calls today. Jake's memory skills are fine. It takes him some time to recall information sometimes but it is average to 'better than average.' They also did testing regarding his attention. His results were 'atypical'. Apparently it was on a computer and you were NOT supposed to click the X. He clicked lots of those. So he said his attention was an issue. Okay, yeah, I get that. Then he says, "Regarding the autism testing...." and I think I stopped breathing... "I do believe that he has an autism spectrum condition. More towards the mild end of the spectrum than the severe." He then tells me he understands that is difficult to hear and I replied, "No, we are good with that." I would like to clarify. We were not wishing for this. It was just something we knew to be true. But when people tell you constantly that you are wrong, you start to question yourself. Plus we have lived with his mannerisms for 6 years now. So you start to wonder, "Maybe this is normal? Maybe we are being nit-picky. Maybe they are right and we are wrong?" But then you go somewhere else and you fill out another evaluation and you are like, "Yep, these things he does are not typical behavior." So I explain that we have thought this since he was 3 years old, and no one would validate us and we were so desperately searching for someone to give us that validation. He agreed that it is frustrating for parents to see things that no one else gets a chance to see, and then those things be dismissed because the doctors/teachers/professionals didn't witness them personally. You have no idea how true that one is. He also said that once you get enough pairs of eyes on a child, they will eventually see things that point them in the right direction. And once they start seeing the same things, you can't dispute them.
So now we have a vague idea of his diagnosis. He is going to write his final report, complete with diagnosis and recommendations and mail it to us. We can then read his findings in depth and share them with his school. I'm not an autism expert. I have read countless articles and sources regarding it, but I still know nothing. I don't know if autism spectrum disorder, toward the mild end is a diagnosis. Or if there is a specific classification within that. When I am filling out forms that ask for his conditions, what do I put? Do I just put autism? I didn't think to ask that when I had him on the phone. So we are getting somewhere, I think. We just aren't completely there yet. I don't think we will ever 'get there' in all actuality. Where is "there"? I'm not one of those people that believe you can cure autism. But I do think you can work with it. We have just been searching for someone to see what we do and lead us in the right direction to help Jake. So maybe we are headed in the right direction. I hope....
Tuesday, October 16, 2012
Autism? Back at square 1?
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.
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.
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!
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