Newbie with IEP questions...

[Joeman]

I'm soooo thankful to find this forum after untold hours of perusing the net for info. I just finished the first 5 chapters of The Explosive Child and I'm looking forward to finishing it tonight.

My DS is 3.5 and was adopted from Russia at 13 months. Since day 1, he has been extremely active, impulsive, aggressive and disregulated. He lacks play skills and is an EXTREME attention-seeker. His behavior has caused an unbelivable amount of stress in our household and he consumes 200% of my energy leaving almost nothing for my easy child DDs ages 9 & 7 not to mention myself and husband. We've had DS in EI since age 2 for ST, Occupational Therapist (OT) for Sensory Integration Disorder (SID) and behaviorial support. Had him diag by devel pediatrician with ADHD and ODD around age 3. A child psychiatric has also diagnosed him with 'language processing disorder" and "anxiety". He has been in inclusion PreK since turning 3 with-ST 3x/week and Occupational Therapist (OT) 2x/week. I also started taking him to a private Occupational Therapist (OT) 30 min a week who implemented a Therapeutic Listening program. We started him on Clonidine for aggression/impulsivity following a horrendous six month follow-up visit to the devel pediatrician where he kicked and spit at the Dr. and called her a 'stupid lady' for no reason other than her asking him a question. While DS has done well during structured time at school, efforts to 'regulate' him have not fared so well and unstructured time is still a major challenge for him. Even with a pretty solid sensory diet at home, his needs are so high that I cannot meet them myself as a parent for his remaining 8 waking hours in the day that he is not at school. We've tried several play-gym type places with no success. He really needs one-on-one structured high intensity 'novel' activities delivered in very quick succession or he starts to spin out of control. His IEP is coming up next week and I'm strongly considering asking for more services. My big question is what and how much and what do I use as criteria to show DS needs it? I know that the school district provides and additional 10 hours a week of in-home services to children who are Autism Spectrum Disorders (ASD) (to the parents who ask/fight for it). DS has not been diagnosed as 'on the spectrum' because no one feels this is his problem because he desires to interact with people (he just doesn't know how to, effectively). I know some Autism Spectrum Disorders (ASD) children in our district also receive daily Occupational Therapist (OT), either on pull-out or after school. My question is that in my view, my DS is equally disabled and in need of additional services. I so far have not been successful in finding any resources on the web related to DS's complex array of evolving diagnoses that I can take to the school, saying, look...he needs x, y & z. Does anyone have any advice on how to proceed or of any resources I might turn to?

 

[SRL]

Hi Joeman, Welcome.

Actually many of the higher functioning Autism Spectrum Disorders (ASD) kids often DO desire to interact with people but have no clue as to how to go about doing that effectively. My difficult child had a borderline diagnosis and he was always interacting with us at that age, but not in ways that were typical of his peers.

If the interaction issue is the only thing standing between him and an Autism Spectrum Disorders (ASD) diagnosis, personally I'd I'd push for it and grab whatever services you could.

Technically though services should be based on need and not diagnosis. Your private diagnosticians should help you out by writing a report to the SD outlining his issues, diagnosis, and recommendations. If Autistic traits are present, it's helpful if they mention that as it gives the district something more concrete to go with. If the district balks, have the doctor write another letter stressing the recommendations.

Have you checked to see if there are additional services available in your state? Some states such as Wisconsin, CA, and NY are known for providing a higher level of services than required by law.

I just went back and reread your post and you must be exhausted! We wound up setting up a mini gym in our basement with a trampoline, a variety of Occupational Therapist (OT) therapy swings, big foam blocks and therapy balls. In the bedroom we put in old mattresses for jumping. It made a world of difference for my kiddo.

 

[Marguerite]

Something else to add to the play - we've used large cardboard boxes, the sort that washing machines etc get delivered in. We turned them into semi-disposable forts with cutting out windows (not totally removing the cardboard, just cutting it open like shutters) and using bits of string for handles, etc. We let the kids design it how they want, and then let them loose to play. Lots of cushions, bean bags etc inside and some books make it really cosy. I found both boys especially really loved to climb inside confined spaces, as long as they were in control. It's similar to the enjoyment of being held, like Temple Grandin's personal cattle press that she designed for herself.

Also, difficult child 3 has always sought out other people, would seek social interaction even though he was generally very bad at it. It's not avoidance of social interaction, its inappropriate social interaction that is the hallmark of autism. From being bad at social interaction, a lot of them do show avoidance perhaps as a coping strategy to avoid risky situations. But some will keep on trying despite repeated bad experiences.

difficult child 3 scores moderate for Pervasive Developmental Disorder (PDD) also. There's nothing borderline about him, although his high functioning means he is adapting remarkably. We do need to be careful to not assume he is doing so well we can ignore the diagnosis - he will always be autistic. But his ability to function in the real world is increasing remarkably all the time.

What I've found - school and the opportunity to learn makes a big difference. If you can keep him occupied and stimulated, especially if you can do it in a functional way, he mightn't pester you so much. It mightn't be so much attention-seeking as entertainment-seeking. "Please entertain me, give me something to keep my brain busy." was what we noticed. Especially with easy child, easy child 2/difficult child 2 and difficult child 3.

What worked for us - I spent as much time with them as I could. easy child was in full-time long day care and was able to organise herself fairly well. She fortunately was good at social play and had other equally bright classmates, but drove me crazy on weekends. With the others, I didn't have that luxury because I was no longer able to work full-time.
So from when easy child 2/difficult child 2 was two years old, we got a computer with software for young children. At first we had to supervise closely because back then PCs were expensive and you couldn't just leave a 2 year old unsupervised; they bash at the keyboard and can do expensive damage. But as technology improved and became more disposable, it was easier. By the time we had difficult child 3 we had picked up an old computer from the roadside clean-up piles. It was an obsolete model but would run our software, once we fixed it. The hard drive was not booting, so we booted it from an external hard drive and from there were able to re-instal the operating system. Because this gave us a free computer, we let the kids play on it freely. difficult child 3 especially loved it, because there were a lot of games we let him play. He was using this computer from 12 months old (maybe younger). I had the computer in our main family room area so I could watch him and still get meals, do other tasks etc. Often I would sit with him to teach him how to do a new game. These were very basic, like some of the earliest games. He learnt how to do mazes by doing them on the computer. It also taught him his mouse skills. Other games we had taught him to count, to recognise his alphabet, and then to do some basic arithmetic. As his skills grew, we upgraded software to keep up.
I still needed to be with him a lot, but not so intensely.

Other things I did - when I played the piano, I would sit him on my lap and help him play by moving his fingers. I would play the tunes he liked (alphabet song was always his favourite) and then I taught him how to play it. I also wrote the note names (letters) on Post-It tape and stuck it to the keys. Then I wrote out the letter sequence so he could play his song by himself. From there, I wrote the sequence but as notes on a stave, labelled with the letters. It was an easy jump from there to him reading music. He was about 2 at this stage.

When I was cooking in the microwave oven, he would run up and watch the numbers counting down. He began saying the numbers aloud and counting them backwards.
We would go for walks and he would run to each letterbox to read the numbers.

All I was doing was plugging into what he was interested in. The walks were his time to do what he wanted, and generally what he wanted involved letters, numbers or music. We would play songs, he would sing along. He was still non-verbal but mimicking, the words sounding 'blurred' with any incidental sound effects in the music also vocalised.

A jogging trampoline is really good for kids needing to burn off energy. You can roll it away behind a cupboard when not in use, although we had it out just about all the time. We used it a lot for difficult child 1 as well.

A suggestion, from my sister's experience with her son (now mid-30s). Her son was seeing an Occupational Therapist (OT) for his (undiagnosed) ADHD, hyperactivity, poor coordination. This Occupational Therapist (OT) gave my sister a list (with plans) of equipment that she could scrounge, cobble together etc plus some games to play with the equipment. Her husband made a lot of it from scrap timber and cargo nets. The equipment included a balance board, a swing made from cargo net (or you could use a suspended hammock chair), some large light balls, some small bean bags (to throw and catch). The game to play included having the boy either in the swing or on the balance board, playing catch with the large balls, a small soft ball (like a foam ball) and the small bean bags. It was all designed to help his coordination. Interestingly, since then a man has made a business out of similar principles and equipment and now charges a fortune for what my sister put together in a corner of their garage. I'm not going to mention the name of that business, just recommend that you do some digging and see what you can find CHEAPLY for yourself.

You can help your child a great deal, without having to spend vast sums of money.

One important game we were given, designed to help with social skills - is cheap and simple. You both sit on the floor, facing each other. You roll a ball to him. He rolls it back to you. if you have more people, you involve them too. More people means more possibilities for people to roll the ball to. It also makes it more interesting. This game is designed to teach turn-taking.

Playing card games (such as "go fish") is really good for teaching turn-taking and social skills. Card games in general are good - concentration, for example. Again, there are computer versions.

To get info on IEPs and any local knowledge you might need, talk to the people on Special Education forum. But SRL is correct - you need to base it on specific need. I found I was struggling to understand the paperwork and how it applied to my child, so I wish I'd known about this site back then. But even with need demonstrated, you need a diagnosis as well.

Good luck, keep picking people's brains. But from my experience, if you have a bright child who is driving you mad with clamouring for your attention and your time, you can't go far wrong by teaching him. If you can make it fun, then not only are you keeping him happy and quiet, you're giving him skills he will be grateful for in years to come.

I remember easy child's teachers, when she started Kindergarten and Year 1, found her to be a handful too, always searching for more to do.The teachers found that if they kept shoving more work at her, they kept her quiet and happy. And even these days, now she's 26 (almost), she is always looking for stimulation. Her house is full of puzzle books, scrap-booking gear, card games, board games, several computers. Her partner is equally bright and stimulating. I can't wait for her to have kids, so I can see her with a kid just like she was - oh, the justice!

Marg

 

[Joeman]

Thanks so much for your replies. I do think now that I am going to get an official evaluation on the Autism Spectrum Disorders (ASD). Even if he falls 'borderline' then I think I would be in a better position to get more services.

We do have a single kid trampoline in our basement and it has an net enclosure. We also have a gymnastics mat, a balance beam and a fabric tunnel and two fabric fort pop ups...a school and a bus along with a big sectional sofa. We have our swingset out back with a disk swing which DS loves and will stay on it so long with you pushing/spinning him that he gets blisters on his hands. I sandwich him between bean bags and sit on him...we call it the baby bird game. He loves to hang by his hands on the trapeze too. I think the hardest part is that he rarely engages in these activities alone. He needs someone to make it happen for him. But when you start to direct him to do something, his first response is to be oppositional. The constant push-pull is very frustrating. His limited range of interests is a real challenge as well. We have tried a picture schedule which works to some degree but with all the oppositional stuff, I'm wondering if I should be forcing 'play' onto him that he doesn't want to do.

I've always thought that if I could get DS able to play on the computer, I'd have something to keep his attention. My DDs love to play Webkinz on the easy child we have set up in our playroom and also their Nintendos. DS is very drawn to doing things that he sees older kids doing. I've tried to engage him on the easy child and on Click Start but he just doesn't get the cause/effect concept. We also have a Leapster (actually 2!) but he mostly just turns it on, plugs in the cartridge and 'pretends' to play...mimics my DDs...'I got to Level 5!' without actually playing the game. I am thinking of asking the OTs to work on this...I do not know how to teach him the concept of interacting with the games.

Thanks again for the help....