Hello! Newbie here!

[tinaninea]

Hi everyone! I've been lurking for a few weeks while I've been having trouble getting my account to activate, but finally, it worked and here I am. I am a semi-stay at home mom (I work for my mom at her insurance company 2 days a week from 9-1, hardly work) to two boys age 3 and 6. It is my 6 year old that I have been worried about for some time and we just decided that it's time to get some help and hopefully get some answers as to how we can better manage the situation.
J is an outgoing friendly boy, and very sweet too, but he is also very hyperactive. This boy will run back and forth across our living room if there is nothing else to do and he will be shaking his hands and his head the entire time while making these constant "pch..pah..pow" sounds. He is a little obsessive, thing have to be done a certain way or he can have a major meltdown. He still throws major fits almost daily over small stuff (apparently it's not so small to him). When he's with a group of other kids, he gets so excited that it almost like he can't control his limbs and the simplest task, like throwing a ball, becomes nearly impossible. He just hops up and down, nearly falling over sometimes and his arms are all over the place.
On the other hand, this child has no short attention span. If he's interested in something (board games, video games, puzzles, etc.) he will refuse to quit until he has completed the task. Someone asked another parent here on the boards if her child lined things up by color. This is my son! He doesn't do it anymore, but as a baby (<1-2) he would take blocks, fridge magnets, and anything he could find and make several lines, each its own color. This was before he could say the colors. He counted to 3 and knew the meaning of the number before he could say "mama". By 2.5 he recognized all upper and lower case letters, numbers, several shapes beyond circle, square, triangle, and all colors. He is in Kindergarten now and has been reading since before school started. He was adding and subtracting double digits although I think he might have lost that since the school is not keeping up with his abilities. In this one school year, my son has been nominated for Gifted/Talented (did not make it although I recieved no scoring sheets, just a letter) and T-1 our schools class for those who are not "emotionally" ready for 1st grade. Something about those two classes just don't go together!
So, finally today we are seeing the pediatrician about this and we have been referred to a place in Houston. They called me yesterday & now I'm just depressed. They have a minimum one year waiting list! What are we supposed to do for a full year? I expected a few months, but that's crazy!
So sorry for the long post, I just wanted to let everyone know what's going on and I would love your input. I'll let you know what the pediatrician says later.

 

[JulienSam]

Welcome!

You've found a great place for support & information, especially from parents who have been through this.

I know most people will refer you to see a neuropschologist, but you should also consider getting a full evaluation from your school district. You're right -- having your son nominated for the Gifted & Talented class as well as the not-emotionally-ready-for-1st-grade class seems contradictory, but a full evaluation could provide some insight into that, as well as what kind of supports could be provided for him.

I'd also call the pediatrician back to see what other referrals they can give you since the 1st place they referred you to has such a long wait list.

I'm just at the beginning of this journey with my 5 yr old son, so I don't have much advice except check in often & feel free to vent -- we all share so many similar experiences & emotions that we can be good support for one another when it doesn't seem like anyone in Real Life understands.

Again, welcome!

Julie

 

[SRL]

Welcome to our forum--I'm glad you found us.

Lining up toys and household objects is one of the red flags for Autistic Spectrum Disorders and given the rest of your description I would suggest that you have a thorough assessment done on him. High function versions of Autism (such as Asperger's Syndrome) are often missed by pediatricians so it's important that you do your own research and be an advocate for him.

Early alphabet fascination/early reading is called Hyperlexia, and is often associated with Autistic Spectrum Disorders.

Here's an article on how to go about getting a referral from your pediatrician. While it's specific to Autism Spectrum Disorders (ASD)'s, the steps would hold true even if you wind up trying to explore other disorders:
http://www.oreilly.com/medical/autism/news/getting_diag.html

You might check around on google or youtube about the hopping and arm movement to see if it meets the description of something called hand flapping or stimming. http://youtube.com/results?search_query=autism+stimming&search_type=

Things to highlight with your pediatrician that will help you get a referral:
Lining up toys and other objects at a young age.
Obsessive
Inflexible about having things just right (and routines, if applicable)
Number/letter recognition prior to age 2.5 followed by precocious reading and math skills
Gross motor control when excited (arms all over the place, hopping up and down)
Speech--if he has any delays or differences (such as adult sounding speech or very advanced vocabulary for his age) mention that also.

I need to emphasize that we're all just parents here so obviously can't diagnose but we can point in you in some directions to look and help you with evaluation issues. Check out these links first and if they don't ring a bell we'll point you elsewhere.

And hang in there--there usually are evaluation options that don't take a year. They might seem like forever ;-) but a year out is a ridiculous time to wait.

 

[totoro]

Hi I just wanted to add a welcome!!! SRL has great advice... It is long journey. But glad you are seeking answers for your son. Whatever his diagnosis, early intervention will help your whole family in the long run!
I would suggest, Journaling things that you are concerned about, why, how long, anything that you can think of, dates, when did they start etc.
I would write a parent report... under the FAQ i think it explains how to write one. I am on my 5th psychiatrist, and the parent reports have been invaluable!!!
I would also try and video concerning behaviors. Just a short copy for the Docs... I give it to them at the apt. and ask them to watch before they diagnosis. For us a lot of them have watched it while we were in the waiting room.
Welcome and hang in there. Read up and take a look around.

 

[tinaninea]

Thanks for the welcomes & thank you SRL for the links. The stemming videos brought me to tears, so you can guess what I'm thinking about the hands thing. And I sent in a request to joing the Hyperlex group. I actually researched hyperlexia, autism, ADHD, etc. when he was about 3 and hyperlexia was the one that I always went back to and read about over and over again because most of the characteristics were almost exact, but a few were not even close. Of course I always try to remember that this is just a list and that each child is his or her own individual and is not going to have every trait. And I thought that I read that it was hereditary and went hand in hand with Dyslexia, and that is something that my father and my sister both have. My little sister's Dyslexia is pretty severe too.

Anyway, we haven't made it to the doctor yet, but I spoke with his teacher today and she informed me that he has been throwing screaming fits in class since the beginning of the school year. I had no idea!!! I know he does that with us, but I didn't think he did it with others. She said he had one yesterday because his folder was not in the order he wanted it in! She also brought up the hand flapping and she said that sometimes she has to repeat what he's supposed to be doing to him several times. We both agreed that he has no trouble with focusing his attention as long as it is on what he wants to focus on.

 

[SRL]

I'm sorry--I know what it's like to make the mental leap from random thoughts to something might be up to settling into the reality that something probably was going on.

Many kids with Hyperlexic traits will respond better to written language so it would be good to give the teacher a heads up. She may be able to address the screaming fits or other issues using printed words.

When you visit the site you'll see there is a diagnostic quagmire between Hyperlexia and Autism. If you want my advice I'd stress that you want a complete evaluation for Autism when you see the pediatrician and deal with the personal quaqmire later. You'll be more apt to get the doctor's attention that way.

 

[tinaninea]

I hate the term ADHD! Mainly because it just seems like it's used so loosely. I feel like doctors just use it when they don't know what else to say. I told my husband before going in there, "he's going to tell us he has ADHD and that's not what I want to hear." So we go in, I open my notebook of the long list of things I want to tell him, I read them off, we discuss them, and he says, "Well, I wouldn't really worry about the things he did when he was younger and the hand shaking thing he does becuase I've never seen any other autistic tendencies any other time he's visited and he seems to communicate well. I think he has ADHD." Wow, what a shocker! He even looked a little shocked when he asked if he finishes all his classwork and I said yes. My DS loves to do his work. The excuse, "Well, sometimes highly intelligent children with ADHD are able to keep up, but when they get older and the work gets harder, they start to fall behind."

At least he got one thing right, my son is highly intelligent!

Seriously, there was no diagnosis, just an "I think it's ADHD, but I would like to refer you to a local psychologist and once you can get an appointment at the Meyer center, go see them too."

 

[SRL]

If there's an Autism Society chapter in your region, it's usually worth contacting them to find out who members recommend for evaluations in the area.

http://www.autism-society.org/

 

[Lulu]

Hello and welcome! Sounds like you've gotten some great advice from the parents who've been there. I'm still learning the ropes for the sake of my almost five-year-old and three-year-old. I second the suggestion to see what your school district offers in the way of thorough evaluation, although your son might be too old. I think my district only does it for preschoolers so they can get the therapies they need before starting school--those therapies are offered free through our district's public preschool. May be worth looking in to if the wait otherwise is terribly long.

 

[tinaninea]

Thanks for the help! I talked to DS teacher about it, we live in a fairly small town, so the schools resources are limited. Basically, the Geselle testing is all they do as far as they are concerned. SRL, I will definitely check out that link.
I made an appointment with the psychologist our doctor recommended for next month. Meanwhile, I have decided to majorly cut back sugar and dairy to see how that affects him.

 

[Marguerite]

Tina, SRL has given you the same direction I would have. Sounds to me like some of my son's DNA has found its way into your son. They could be clones of each other.

My son was initially, tentatively diagnosed as Asperger's, but once properly assessed we were told firmly that he is autistic. Nobody seemed to have heard the term "hyperlexia" which I found for myself. I was posting a lot on the hyperlexia site, when problems we were having needed more and someone sent me here instead. Since then I've mentioned hyperlexia to another doctor (pediatrician) difficult child 3 was seeing, and she added it to his diagnosis in her file with no argument.

Part of the label issue - in Australia some conditions just don't get mentioned. Hyperlexia is one; childhood bipolar is another. If a parent says, "I want you to consider this," some doctors will say, "Okay, I'll look into it," and maybe the diagnosis can eventuate, but generally they won't come up with it themselves. Our doctors are a conservative lot.

You need to get him assessed, preferably by a multidisciplinary team. But in the meantime, here are some things you can do:

1) Try to set up a speech pathology assessment. This needs to be done to see if there are any elements of language delay (needed for more accurate diagnosis). Even if he is rapidly making up ground with language, it is HISTORY of language delay that is such vital information.

2) Get your hands on "The Explosive Child" by Ross Greene. There is also some discussion on this book on this forum which you should find useful. Get his teachers to check it out as well. It really helps!

3) Try to set up a Learning Team meeting with the teacher. Without a diagnosis they can't put formal support in place but between you, you may be able to set up some strategies to make their lives easier, as well as his.

4) One strategy I urge you to use - a Communication Book. It's an alternative to regular (ie daily) classroom-step-conferences. Teachers need their break at the end of the day, especially if it's your kid that is making their life more challenging. This book makes it easier for them to head for home for that much-needed stiff drink, and yet still pass on to you vital information about how his day went.
I got a simple exercise book and printed out a full page 'label' for it. It said in large print, "Communication Book" with difficult child 3's name (and the number in the sequence - we had 7 in all, over the years he was in mainstream) followed by, in smaller text, "Family, friends and teachers, please write down anything of interest that difficult child 3 says or does, so we can have a record of his activities and progress. Good things, bad things, it helps everybody to know about any change in pattern as soon as possible. Regular use is most helpful for everybody."
I would write anything I felt the teacher needed to know such as "he slept badly last night with nightmares. He may be more tired and irritable than usual today." The teacher would reply with, "He actually wasn't too bad, until after lunch when the wheels fell off because he was asked to write a story."
Over time we could begin to see patterns and learn what set him off, what worked and where any other problems lay. It was the use of the book that helped us pinpoint an allergy of his, as well as the regular bullying. I kept the book informal and also did not penalise a teacher for venting.

5) Find ways to use his abilities/interests to keep his mind stimulated. For example, I taught difficult child 3 to read by writing a word down and drawing a matching picture. I'd make little books for him by folding a sheet of paper over and over, then stapling it and cutting the pages free (tape over the staples for safety). I did those when he was 2, and found that the words he learned to read were also the words he learned to use; he learned to talk because he first learned to read those words.

6) Try teaching him to play an instrument and to read music. I taught difficult child 3 to read music by plugging in to his obsession with letters. A piano works brilliantly with this because of the keyboard. I got Post-It tape and put a piece on each key of an octave, writing the name of the note on it. I then wrote the sequence of letters he needed to play, for him to be able to play his favourite tune ("Twinkle Twinkle Little Star" which is also the alphabet song). From there, I drew up manuscript (you can do it on standard lined paper, by using three consecutive lines to make the five staves, just rule another two lines between the others) and then drawing a circle with the name of the note written inside the circle, but placed on the correct line of the manuscript. From there is was a simple leap to plain notes.

Something to note, purely for my own interest - how are his joints? I keep coming across people with a hyperlexic, autistic child and their child, like mine, has hypermobile joints (aka double-jointed). You could see it with difficult child 3, especially when he tried to hold a pencil - his finger joints could bend back a lot, making holding pens and pencils painful and awkward for him. Playing piano actually was good therapy for him because he had to learn to curl his fingers in, which also helped strengthen them a bit. However, the hypermobility inevitably brings other problems such as early onset osteo-arthritis. We're already seeing it in difficult child 1 and easy child 2/difficult child 2 (also both hypermobile, also somewhat hyperlexic). They get it from their father.

If your son is doing maths, reading, doing other things like this - he needs the opportunity to continue to develop academically at the pace he is capable. However, this will be patchy. Some areas will be much more difficult for him. He may need to stay in the behaviour class but be given extension work. it's a difficult call. Kids who are in the gifted but learning disabled category are often falling through the cracks. What we've had to do with difficult child 3 is make up the deficits the school was unable to.

Where difficult child 3 is at now - although he 'failed' his first IQ test (he was 4, had major language delay and just hadn't been able to understand the test or its significance) he has since been assessed (conservatively, we were told) as having an IQ in the mid-140s. He is brilliant at punctuation, spelling and vocabulary, but when you put it all together has difficulty with any subtlety in the meaning. He is not good at "reading between the lines". He IS very capable at science, maths (when he takes the time to think about it) and anything analytical. He is now studying IT and electronics, doing very well. He has always been amazing at trouble-shooting with computers, he's already been paid for fixing a neighbour's computer problems for her. When he first started school his teacher used to sometimes use him to solve a computer glitch. he used to help his classmates if they were having trouble with the computer. He even hacked into the teacher's file for her once when she forgot her password (I think he must have been shoulder-surfing).

Socially - he now copes much better than I ever thought he would. He can be tactless, but not deliberately so. He makes an effort to be polite and kind, likes to help people, will chat to total strangers as well as people we know (he does have some face blindness problems) and can go off on his own at a shopping mall to 'comparison shop' for the best price for a product. A lot of people who encounter him casually are surprised when we tell them he is autistic. But his autism is evident if you know what to look for; it's in the moderate range, not mild. But as he said when he was 8 years old, "I'm getting better at pretending to be normal."

He understands about his autism and doesn't see it as a problem. For him, it is part of who and what he is and along with any problems, it has also brought gifts, intelligence and capability.

If you can Google "Tony Attwood" you may find some of the positive characteristics he has listed, as being found in people with high-functioning autism. Among them are loyalty, honesty (they are really bad at lying and soon learn it's safer not to try), law-abiding (you just have to teach them the right laws), and deep emotions.

It used to be thought that people with autism felt no emotions. That's not the case - it's just that they don't always express their feelings in ways we recognise. But they do feel, very deeply. Often they don't like to be touched and you have to only touch or hug them on their terms, but when your autistic child gives you a hug, you know they mean it.

We ask difficult child 3 for a hug, or a kiss. He used to hug his teachers all the time, even though they are not supposed to touch the students. He would always hug me at the school gate even when other boys would be too embarrassed to be seen hugging their mother.

They are a lot of work sometimes, but I have seen more progress than I ever thought possible, and it is the high IQ that has been an important tool for difficult child 3 to be able to do this.

Marg