You know, your child should also qualify for an IEP on his spectrum diagnosis alone so that he receive speech therapy from the school to support his social and pragmatic language development. Over time, it is also important for him to receive reading comprehension support through specialized small group learning which in my district is done through a learning center model of specialized instruction, but if your area does not have an learning center model, an IEP can be drawn up to support his language learning needs in the classroom, as the very definition of spectrum disorders is that expressive and receptive language skills are concrete and functional making it difficult to participate in social language or draw inferences and understanding through language other then in the most concrete sense.
While this is another thing to tackle, you may also want to put your energies here, and fast, because I wonder what in the heck is going on in his classroom. What does his school day look like without any IEP or 504 accomodations. If they are telling you that they can't make accomodations until he is tested, then, stay on them until the testing is complete and read up on proper accomodations for children who have your son's issues. He will feel so much better when he is supported at school. He must be a ball of stress poor guy.
My son was in the 1st grade when his issues came to head for us too although Kindergarten wasn't a picnic either. However, when learning expectations in 1st grade jumped, and there was less time for play and recess, he became destabilized. He was tested then and placed on an IEP.
I hope that your school system can support his needs but work with them and see what they come up with. And, come back here to ask questions about the IEP process and your rights. I know this process all too well and i'm sure that many others do too. You will become the bulldog. Even though you're scared I'm sure you have it in you.
O.K...I just reread your post about having 504 accommodations without the 504 in place. Forget about the 504. He needs a much more comprehensive IEP to cover social, emotional, language, pragmatic and learning accommodation support. Your son must be so confused so much of the day. My guy, with PDD-NOS needed constant support to understand the social dimensions of classroom life. His school needs to step it up! Put in writing (in my school, it is to our guidance counselor) a request for a school evaluation to determine whether he qualifies for an IEP. He should qualify for the spectrum diagnosis alone. Please don't struggle with this at home without having the school do their job. You could be struggling so much at home partially because he is feeling so very very anxious at school.
Thank you for the info on 504 plans. No wonder the school psychologist wouldn't meet my eye when she said he didn't need one yet.
As for evaluations (to livinglife), he was eval'd last year and didn't qualify for special ed services. Thomas' IQ is high and in testing (one on one with an evaluator) he did mostly fine. His anxiety and social difficulties aren't going to come into play there... except for the executive functioning portion, which of course he did dreadfully on. Doesn't matter. They have bigger fish to fry. Thomas' therapist wants him re-tested by the school, but I'm hoping we can get the neuropsych done elsewhere, because then finances don't come into play. Our school district is very, very in debt.
I totally understand what you mean about the little angel guiding you in research for your son. I am taking deep breaths and letting my instincts guide me. Already have a lot of wonderful ideas due to you fine ladies. Thank you, thank you.
Suz, mommy to 2 chess-playing, lightsaber-wielding boys
He should qualify for an IEP regardless of his high IQ purely on the basis of his spectrum diagnosis in order to receive social and pragmatic language support . I don't know your son, or what state you live in....but a spectrum diagnosis usually by definition will bring social language and pragmatic language problems, that lead to anxiety in and of themselves, due to an awareness that they are not doing well socially or due to punishments they receive when they were unaware of the expected behavior, or poor reactions they get from other children but are unable to access the language and understanding required to change the outcome. I would be anxious too if I were on the spectrum and not getting any support!
If social and pragmatic problems are not dealt with it will lead to confusion and subsequent behavior problems that if are not seen in school will spill over at home. It is very telling that he hates it and doesn't want to go back. He seems to be taking all his frustration out on the family.
When my son was diagnosed with PDD and also showed features of anxiety his neuropsychologist who evaluated him said that his anxiety would likely clear when his school began to teach him pragmatic language skills, no longer discipline him for problems arising from his confusion, and give him clear and precise language consistent across all areas to explain his school expectations and use some incentives to encourage behavior that they want to see. Even if the evaluator at school does not see these issues as clearly as you do at home, they should be taking behavioral and emotion inventories to determine the level and extent of the issues at play in other areas, both school AND home. A problem at home can become a problem at school very easily for a child on the spectrum, as a high functioning child can no longer meet the higher demands placed on them for work and social interactions.
Instead of getting the school to "retest" I would get an outside evaluator who will tell the school the "official diagnosis" and what they recommend your child's services to be to provide an equal access to their education. In the interim, look for an advocate to help you wade through what you are entitled to ask for for your child based on the testing already received. You CAN and SHOULD receive an IEP with diagnosis specific recommendations for social and pragmatic language support. Often, parent advocates volunteer through your area Special Education Parent Collaborative to help parents through the process.
Our doctor agreed with you -- he needs an outside evaluator. My husband is not thrilled about the $1000 cost, but we'll find a way. Our doc also strongly felt Thomas has a processing delay... something the school doesn't agree with, but the doc said they rarely pick it up in their evals. He referred us to a neuropsychologist down county and I will call tomorrow.
Thank you again for all your kind help. Doc has him on new herbal supplementation, we will do heavy metal testing next month, and proceed with the neuropsych testing, and then take it from there. He is not opposed to medicating, but after speaking with Thomas and myself for quite a while today, feels that there are some more avenues to explore. I feel like we have a direction now and that's what I wanted.
Thanks to everyone again -- I've saved everyone's comments and suggestions. Mothering is so wonderful for expanding my horizons and my thought processes!
Suz, mommy to 2 chess-playing, lightsaber-wielding boys
I'm so glad to hear that you have a doctor that's backing your up! Let us know how it goes!
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Gosh, I have nothing helpful to add, just wanted to say that I am right there with you all.
My son sounds just like Thomas. Your comment about how you glimpse the sweet boy sometimes and just want to get him back to that. UGH! It makes my heart hurt because I am right there with you. That is my son too. He can be so sweet to his little brother and the next moment raging at me about something. :(
We tried ADHD meds, just one round so far and it was a disaster. I know it takes a couple tries in most cases to get the right med, so I am researching them more before I decide which one we can try next. I feel certain we will try again I just want to be more informed. I am talking to lots of other parents in this boat and asking for lots of information.
We are also dairy free ( he is actually allergic we found out through blood test), mostly wheat free (got to get better at this), watch sugar, diet and all that jazz. Doing therapy, yada yada... The list goes on, right? LOL!
Anyway, I got on here today because I was looking for more specific reading material and threads that might be helpful to us.
Just today he begged for the park but once we got there he rode off on his bike where I couldn't see him and had to hunt him down (impulse control issue) and then threw a massive fit when i asked him to put on his shoes, finally we left. :( Then threw a fit all the way home. We home school and he also threw a couple tantrums about school. Oh and I was stupid enough to take him in the grocery store, so yeah. Its 4pm and I am done already. Where is the wine?
Homeschooling mama to 3 Italian babies. Due with #4 on Sept. 28! Planning a rockin' Homebirth.
Your post made me laugh -- thank you for the support. :) Sorry for your bad day though... man oh man, I know those (and the need for a glass of wine at the end of the day. Or the desire for it in the middle of the day if it's really bad. ;)
I am the queen of reading. Some books haven't helped at all; some have helped a bit. The best is The Explosive Child by Ross Greene. I'm reading Parenting Without Power Struggles now, and while some of it would make Thomas roll his eyes, I like how it's put his behavior in perspective for me. I'm more hopeful.
The herbal med Thomas is on (he's actually on several, but the predominant one) is especially for ADHD, and can be taken in conjunction with prescription meds. It's called Nurture and Clarity. I DO think it helps... not enough, but we're starting it in conjunction with other things, so we'll see. It's from Israel and puts a dent in the wallet, but maybe something for you to try. My friend's son has ADHD and she has noticed HUGE differences in his violent behavior since she put him on it. Like this whole thread says though... something different works for every kid.
Thomas recently had his hearing checked by an audiologist, and has significant conductive loss in both ears. This was a huge shock for us, and could definitely be contributing to his issues. (The audiologist said he was an excellent lip reader, and probably had been doing so for quite some time.) The ENT said he has a lot of fluid. We're waiting the requisite 6 weeks, but then he will be a likely candidate for tubes. I know diet can contribute to the fluid issue, but I still can't figure out what could be causing it. At this point, I would let them do the tubes. He needs to hear. All other testing has been put on hold since then.
He sees his ped tomorrow for a follow up and we're going to discuss some of the other suggestions in this thread.
HUGS to you and luck and good wishes. And maybe a nice bottle of wine too...
Suz, mommy to 2 chess-playing, lightsaber-wielding boys
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