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Diagnosis! So relieved!

Feb 16, 2012 - 6 comments
Tags:

sensory processing disorder

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vision therapy

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SPD

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SID

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Childhood ADHD

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dyslexia

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Occupational Therapy

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vestibular system



I haven't been too active on MedHelp lately, but wanted to write this journal as an update to anyone who may still be following my timeline of events concerning my oldest son since joining this site five years ago.
Trevor is currently seven years old, and I've written multiple journals about him over the last five year concerning his behavioral quirks and learning abilities. I noticed from a very young age with him--about 15 months old--that he seemed a little above average with high energy. Since he began walking, he's always been extremely active, and I'll even go as far as saying yes, my son is hyperactive, without using that term lightly. Trevor is going going going, constantly, unless he's sleeping or he's sick, he literally is always in motion. Some part of him is always moving or going full-force impact into something. He is not the most coordinated kid, either.
Over the years, I've noticed (and admittedly gotten frustrated with) how nearly every other kid that has been his age, or even younger, just seems "easier" for parents to handle and even learn things more quickly. Not that Trevor isn't smart--he's actually quite intuitive with people and has an amazing memory--but other kids just seemed to pick up reading, writing, coloring in the lines, tying their shoes, riding a bike, and heck...even playing video games more quickly and easily than he ever has. For me, as his mother, I feel like I spend more time getting onto him to settle down and focus and be still than I do anything else. He's all over the place all the time, and no matter what we've tried to establish boundaries, discipline, positively reinforce, and keep his world routine and structured--his energy level simply seems to NEVER get under control. I've jokingly told many people he has a theme song: Flight of the Bumblebee.
When he was in pre-school at age four, I saw other kids in his class learning to read and write, yet he could barely keep letters aligned on paper, much less apply enough pressure to the pencil to write something to be seen. His teachers didn't seem concerned. Neither did anyone else. In fact, that was one of hte first journals I wrote about him on here, wondering how easily a child should be able to learn to read. I even wondered if he might have dyslexia because he was consistently seeing and writing things backwards or transposing letters in three and four letter words. But since he was so young (age four), I got a lot of the "kids learn at their own pace" lines from not just his teachers, but advice on my journal--and even that expecting that much from a four year old boy was essentially ridiculous. So for another year, I dismissed my concerns even though it continued to be a nagging issue for me simply because about 15 other four year olds could easily do what my son struggled to do. Why? And why did this not concern anyone but me?
By the time he got to kindergarten, he seemed to improve. His reading skills did get better in his first semester, and he began to apply enough pressure to the pencil when writing that you could see what he wrote. He was clearly making an effort to spell phonetically and doing pretty well. However, he was averaging about three yellow cards per week in his class--meaning his behavior was interfering with his classroom time, which was always a discipline warning for talking too much (he's extremely social) or not staying in his seat or staying wherever it was he was supposed to be. He would get frustrated because he'd finish his work last, or close to last, and couldn't get up to go to "Centers" (a type of learning playtime) until he was finished, yet most of the other kids were already playing. By halfway through the semester, I was getting really concerned that he was getting so many yellow cards per week, so I emailed his teacher and asked if she had any concerns about ADHD. I did not get a response back. A couple of weeks later, we had a parent-teacher conference, and I asked her about it then. She did not seem concerned whatsoever about him and said that he was not a "problem child," but just exubrant and needed lots of structure, but that since he was right on par academically and not falling behind in anything and maintaining his average grade level expectations, she assured me I had no reason to worry. But I was not assured. To me, something was not right because I did not want to have my child having to endure this constant discipline. I expected things to be easier for him.
At the end of his kindergarten year, there was a Mother's Day breakfast his class was hosting. All the kids had made cards and handwritten notes and drawn pictures for their mothers. EVERY single child's writing and drawing was legible and recognizable. You could tell what they wrote even though most of it was misspelled, and their handwriting was much improved. Everyone's except Trevor's. His writing was not only all over the paper, but whatever it was he spelled did not even phonetically make sense, and I could only make out what some of the letters were because most of them were incompletely written or they were backwards. I had to ask him what he wrote. I was infuriated at this point that his teacher seemed to think this was no reason to be concerned. Not only with that, but also that his reading test grades were slowly dropping as the books got longer and wordier. She said since the kids were so close to the end of the year, they were losing motivation. I said he sure wasn't, because I read with him in these readers every night, and every night, he struggles to read them. He reads one word at a time and can't keep track of moving from one word to the next, and he sometimes even reads backwards. But again, I got the kids-learn-at-their-own-pace line.
I posted more about it here in journals on MedHelp. I asked for advice, opinions, anything--and also did a lot of internet research on ADHD, dyslexia, and even nutritional diets that can affect behavior. I even researched Sensory Processing Disorder (SPD), which, whenever I mentioned it to anyone, seemed unheard of, yet for Trevor, he seemed to fall right into so many categories of it. But since no one of "value" (ie: teachers, daycare workers) seemed concerned, and he wasn't really a defiant brat who seemed to purposely be looking for ways to get into trouble, I didn't take him to his pediatrician at this point. I worked with him over the summer and realized something: for as much as I was working with him on the same things, day after day, with reading and writing, he was not only struggling, but he was making NO progress. It was like he hit his peak for reading/writing development mid-kindergarten and remained stuck at that point.
I decided to take him to the eye doctor before starting first grade, and that marked the beginning of progress. We found out that he had almost no ability to track back and forth with his eyes (obviously essential for reading) or accommodate his vision to adjust from far to near and near to far. That's why he was always seeing everything in jumbles; but to him, knowing nothing else, that was normal, so he never knew he could express anything was wrong. He was just always frustrated with having to read and write. Between August 2011 to February 2012, he did vision therapy twice a week. Within the first month of vision therapy, his progress was so amazing that I was blown away. He started reading with ease. His handwriting became neat and legible. By December, he was seldomly writing or seeing letters, words, and numbers backwards anymore. His reading became smooth and he can now easily transition from one word to the next, one line to the next.
But--his energy level, self-control, impulse control, and self-awareness in his personal space was still an issue. His vision therapists told me from the beginning of his treatment with them that they were "unofficially diagnosing him with SPD" because they usually deal with kids who have it along with their vision problems (and vision issues like Trevor's actually are in the SPD spectrum because vision is part of the sensory system). They used a few techniques they knew with other kids like him to keep him "reigned in and focused." He has absolutely no problem paying attention or retaining things if he's physically controlled enough to do it. So they told me they were certain that he did not have ADHD. I was convinced he didn't have ADHD either. Since starting first grade and being in vision therapy, he not only has maintained straight A's in school, but his teacher has told me he's "a model student" and one of her "best students" and most days, "hardly knows he's there" because he's well-behaved and gets his work done. She has said that he talks and fidgets a lot though--but hasn't noticed him doing it any more than any of his other classmates. However, he is in a class with 19 other kids, so I know the teacher can't give him a lot of undivided attention to notice little things about him all day, like sitting on the edge of his chair and tipping it (I've watched him do this for a whole class period) or constantly readjust his seated position in his chair--while other kids are sitting pretty still and not moving nearly as much as him. Thankfully, his self-control at school this year is MUCH better than it was last year and even at home or anywhere else. Why that is, I don't know--but I'll take what I can get to stay positive.
Meanwhile, he's finished his vision therapy and his vision therapists referred him to a pediatric occupational therapist who specializes with SPD. He had an evaluation on Valentine's Day and let me tell you--I was absolutely blown away with amazement at how the techniques and exercises she used determined and answered SO MANY questions about why he does the things he does, moves the way he moves, has the posture he does...even speaks the way he does. Within 15 minutes, she determined he has vestibular hyposensitivity--meaning his inner ear structure is not developmentally where it should be at his age, so he is literally off balance at any given time. She tried to have him track a pen with his eyes up and down (he could do it from side to side just fine) and you could see him almost lose his sense of balance and perception as he tried to track it--and he was just sitting in a chair! The only part of him moving should have been his eyes, but instead, he was more like a bobble-head and started to lose his balance trying to follow the pen. The OT told him to close his eyes and shake his head as fast as he could until she told him to stop--he did that for about 10 seconds, then stopped, opened his eyes, and was almost immediately able to track the pen with ease!
Then she had him stand up and put one foot in front of the other with the heel touching the toe. He could not align his feet straight without help of having his feet physically placed where they needed to be to make a straight line. Then he had to stand up straight and keep his hands at his side.
He COULD NOT keep his balance. No matter how hard he tried, he would topple one way or the other and had to be caught and re-balanced by the OT. She also had him do some type of test on his hands and knees and turning his head from side to side, which I did not get a chance to see all of how that worked because I was trying to fill out the 100 pages of new patient paperwork, but anyway, there were parts of that test that he could not do either--which the therapist said means that he can't synchronize and coordinate certain motor skills that he should be able to do. And she also did a perceptive age test, which I'm not entirely sure of the proper definition for that, but the best way I can describe it is that it is how he perceives the world around him. It has nothing to do with his IQ level or academic progress, but I suppose it's more of a maturity level. Anyway, his perceptive age is 6.2 years old. So clearly, he does need to have the chance to do this occupational therapy because it will help immensely for him to learn to cope with something he never knew he had, and find ways to work around it in order to mature better. This will also help us, as his parents, to understand him better--it has been a challenge for almost his whole life trying to keep his energy level contained enough just to function with even the most basic things with him. Getting through a homework assignment, sitting through church service, even taking him to a playground because there is the concern with his clumsiness that if he gets too amped up, he will get hurt--and he WILL manage to get hurt or hurt someone else if he is not supervised at all times because he's just so hyper and clumsy. But that's because internally, his vestibular system is sending messages to his brain that without movement, he does not feel stable. Trevor is the kind of kid who can spin around and never get dizzy, can hang upside down and never feel sick, and to his disadvantage, start to fall on his face and not realize he's falling until it's too late to catch himself. Just a few nights ago, he was jumping around the kitchen in his socks on the lenolium and fell on his face and gave himself a black eye. Things like this we deal with EVERY DAY. And the bigger and stronger he gets, the more of a safety hazard he's becoming to himself and others around him.
I cannot express how glad, excited and relieved I am to finally have an answer that I've not only suspected for years, but a course of action to work through it!
Who knows? Maybe this will be the year he finally learns how to ride his bike without training wheels and no fear. :-) He's such a good kid and I'm so proud of him. I'm so thrilled that he'll have this opportunity. He's struggled for so long without even knowing, but just enduring--he deserves this chance and I'm really happy for him.

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by mum2beagain, Feb 16, 2012
I am so happy for you that Trevor is getting the therapy he needs to put him on a road for success. I know that for us when our oldest son was diagnosed with autism and we worked with therapists it helped us understand so much why things where the way they where. And once you understand you can help. Mom's instincts are usually right. I hate to see posts in some of the communities here where parents have real concerns and strangers who have never even met the child tell people it is nothing to worry about. How the heck do they know? If a parent thinks something isn't right they should pursue it until they get answers. I always tell people I meet in these kinds of situations there is nothing to fear in a diagnosis; it is merely the key to opening the door to the help you child requires. Hope to hear soon that Trevor continues to do so well.

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by specialmom, Feb 16, 2012
You know I'm cheering you on.  I think you'll be thrilled with how Trevor responds to therapy and what it does for him.  Our occupational therapist made fine motor activities such as handwriting a mute point.  So valuable.  They've really worked with him on all of his motor planning issues.  But what I love most is they give him that input his nervous system craves.  This along with what I've learned at home makes my son calm and well regulated.   Wouldn't trade that for anything in the world.  

So good for you for advocating for your son and not stopping until you had answers.  Trevor has a terrific mama!

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by AHP84, Feb 16, 2012
I did have to change pediatricians in the process. When I expressed concern at a pediatric consultation about SPD and for a referral to an OT for and evaluation, the pediatrician basically ignored me and, in short, said if I had those concerns, I should have him evaluated for ADHD instead. I told her I did not want to spend my time and money having him evaluated for something I was certain he did not have. So I was also told I probably didn't give him enough positive reinforcement (are you kidding me?!) and that I should want to spend more money and time on giving him positive reinforcement because, "Wouldn't you rather spend your money on HIM than some therapist?"
Word for word, that is exactly what his now ex-pediatrician told me.

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by mum2beagain, Feb 17, 2012
Unfortunately not all peds are very sympathetic to these types of situations. Again good for you for following your instincts. All the best.

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by specialmom, Feb 17, 2012
mum2beagain, you are right.  There is a tremendous amount of ignorance about this subject.  Luckily, sensory integration disorder is picking up in awareness.  There still can be a bit of a stigma about having a disorder or a child with one again due to lack of information and awareness but that is changing as well.  WE are our childrens advocates and must speak loudly to help them.  And the right diagnosis and intervention is the way to do that.  

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by AHP84, Feb 17, 2012
I have been really relieved and excited to know of parents who understand this issue and can relate and sympathize with it because they have children with SPD or another spectrum disorder that isn't very well-known. It's been a tedious road for me, as his mother, to get to this point. I had come across information about SPD four years ago and had high suspicions that Trevor had it, but if I ever mentioned it to anyone, I got blank stares and "I've never heard of such a thing...sounds like a bunch of baloney," along with plenty of unwanted and unecessary advice that I need to provide firmer discipline, boundaries and structure for him, or give him more positive reinforcement and spend more one-on-one time with him or make him do more physical activity to wear him out. Either that, or I'd get the stereotypical question, "Is he ADHD?" just because he's so active. Don't get me wrong, I did wonder that myself for awhile and researched it thoroughly online, not wanting to take him to his pediatrician for it based on a suspicion that I had extreme doubts about in order to avoid getting him medicated as an experimental trial.
The more I concluded from my own research that he had to have SPD because nothing else made sense or fit all his symptoms (excpet dyslexia on many levels, but we got that ruled out now), it seemed there was more hesitation and reluctance to believe that from many people (including this ex-ped). Somehow, I felt that "blame" for his behavior always fell back on me being too lax in my parenting. But the bottom line was--I was tired of feeling like all I ever did with Trevor was try to balance positive reinforcement with discipline, one-on-one time with isolation because he was just TOO rough and hyper that admittedly, it's sometimes just unpleasant to be around him because he won't settle down and a gentle touch is oftentimes a foreign concept to him when it comes to giving affection. He doesn't mean for any of it to be this way and it's painfully obvious to see that he can't help it. I am tired of disciplining him and trying to ineffectively help him control something that he's not even aware is a problem. And I am not about to lavish him with gifts and praise for things that should be typical, normal, moment-to-moment expectations of his behavior--that is unrealistic and sets him up for a sense of entitlement and selfishness. So maybe my parenting is not what some people expect it to be, but I do have to take a step back and see that he is a great kid who has straight A's in school that he works his little butt off to achieve, he's well-liked by his peers and teachers, has a heart of gold, adores his baby brother, and almost never acts like a brat. I had to realize that my child does not need any extra structure and discipline and gifts and extra personal time, because in the ways that I have tried to apply all of that, it is ineffective--and NO ONE can understand that unless they've had to deal with it every single day for six years.
I did not come to this conclusion overnight, just looking to find something wrong with my son. In fact, I really should have pursued getting him this treatment sooner, but even I didn't want to face it head-on because I almost felt guilty for having to admit that I knew there was something wrong. I wanted to believe that he was just a "normal boy with lots of energy." I wanted to believe "each kid learns at their own pace." I even wanted to believe that my expectations of him were too much or too high. I didn't want to spend time and money to find out he had something that would probably effect him the rest of his life in a way that, at first, I mistakenly thought would just stigmatize and stereotype him. But the older he's gotten, and bigger and stronger, the harder this has become to ignore as accidental injuries to himself and others have become more and more frequent. We could not ignore this any longer, and I had to break out of the mindset that admitting something was wrong with him and getting him help would socially hurt him. This has been an eye opener for me. Without recognizing this issue, trying to ineffectively control it ourselves, and not seeking help would set him up for failure and hardship. That is the one and only regret I have about this--that I did not seek this help sooner when I KNEW this was a problem since he was a toddler. But once I did know that I wanted to get him this help, I feel like it was not encouraged enough from the people who should have encouraged it, and it was slightly more difficult than I thought it would be to get him into OT. I also found out that my health insurance will not cover OT (they didn't cover his VT either, so as of right now, I've put over $2,700 since August and that price is going to keep going up with every OT visit now).
So even though this is going to be an expensive route of treatment to follow, I know it needs to be done, and I couldn't feel more confident about starting this next chapter with him. I'll pay any price because I know he needs this, and I know it will be worth it.
It's been interesting to think that all these years, it's been so easy for me to advise people to seek help for their kids for issues like this, but had difficulty doing it myself. I have a whole new perspective about this now and want to encourage any parent who has a nagging suspicion that something is just not right, despite all the blame and advice you'll get for your own parenting and "default diagnosises" you'll get from people who "know it all" and even your own doctors just because symptoms mimick a better-known disorder, do your research. I cannot express enough how important this is. Don't just assume what everyone else says is right. If anything about your particular puzzle does not fit, don't ignore or disregard it. Keep searching for the answer and don't be afraid to address it, even if it does seem scary at first. In the long run, getting no help at all will bear much worse effects. As parents, our kids count on us more than anyone else.

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