Long Term Diagnosis of SPD

by Liz
(NJ)

My Question:




Once a child has been diagnosed with SPD will they always struggle with this problem? Although my son has been declassified he struggles with organization. He is now 13 years old and in the 8th grade. He was diagnosed with Sensory Integration Dysfunction when he was 4 years old by a Neurologist and a Geneticist.

I want the school to accommodate his needs and hand him his homework and classroom notes in writing. I think he is not able to get himself organized to keep up. Is this a reasonable request? Are there any other requests I could ask the school to do that could help him?

He doesn't seem to have problems with learning the work, in fact he seems to be above average in math (except Geometry). I think he is feeling stress and is getting depressed. I need to help him, and I need to know how. Thank you for any help or insight you can offer.

Background:

My son was classified and placed in special needs classrooms from age 4 thru 10. He displayed many of the typical symptoms from sensitivity to food, clothing, noise as well as low upper body strength. He also couldn't feel his feet and often fell and had difficulty with stairs. He had low sensitivity around the mouth which affected any type of blowing, such as being able to whistle.

He had many years of weekly, one-to-one physical and occupational therapy. When he was young he responded to the weighted vest and the brushing technique.

He has outgrown many of his symptoms, and was declassified in 5th grade. However, his problems with distraction and organization are currently jeopardizing his ability to stay current in his studies. He is failing three subjects, primarily because he does not do the homework. For instance, in pre-Algebra he his grade is an 80, but the delinquent homework is giving him an F. He is not a discipline problem and has many friends.



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Jan 28, 2009
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starstarstarstarstar 		organized???to Liz
by: Anonymous

Liz: How do your son's teachers handle the other student's getting the assignment written down? Do they write it on the board or just do it verbally? If they only do it verbally, I'd bet there are other children who don't get it either. Any student who has any auditory processing problem will be having trouble w/ that and at least if they wrote it on the board, the students could see it and get it written down - does your son have a special notebook for writing down assignments? Or a special folder? >>>could the teacher send home a copy of lesson plans(out of the book) on Monday so that you could see what pages needed to be done, read, problems to do, etc.? This doesn't seem like a problem to me - just resistance to make a small accommodation for your child...... I think if you don't get some kind of resolve, I'd talk to the principal and ask for suggestions from that end.

I'd also perhaps suggest to the teacher if your son could have a special box for the teacher to put a copy of the lesson plans or even a hand written note or something. Think about or go talk to each teacher and look at their space available that could be an easy spot for your son to have a little space for communication to him -- so that he knows he MUST check it each day and bring that home. He is at a stage when he needs to be responsible, and needs to have coping mechanisms so that he can be a responsible adult.....and I'd bet that's what the teacher(s) are thinking - that if he's 13, he shouldn't need it.....so, then, I say, either get him back into special classes, or the school has a responsibility to HELP him learn some coping and educational 'tricks' for him to get the work from home to school and back again.....and they should be communicating w/ YOU!

This is very upsetting to me.....I was there w/ my Kim, and I cried after she went to bed more than once, and I'm still very passionate about students not getting individual help .....that's our job as teachers....I work w/ preschoolers and I have to do that even at my level and I must communicate w/ parents alot, b/c my little kids can't.

Hang in there....and keep asking, advocating and bugging someone until they help you! Know your parental rights.....then they will! Sue
Jan 28, 2009
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starstarstarstarstar 		Long Term SPD -Response to Sue
by: Liz

Dear Sue,
Thank you so much for your response. I have never written to an internet site, and must say it is great to get feedback from someone who understands the subtleties of an older child "not quite successful" (as a mom your heart breaks for them because you can see them giving up)

What you say about teachers not responding to a parents concerns and requests is exactly my problem. I had met with all of them in Nov 2008 when he started failing (again)to explain his history and ask for help. I am concerned about singling him out and making him "different", so I hoped with their watchful eye he would be able to improve. I didn't hear anything until now, 2-months later (Jan09), that he is failing at least 3 subjects (one with a 37!). I am amazed that I never received one phone call from the school (whether he is classified or not, but especially based on the formal meeting I had just 2-months before).

I am looking into a 504 plan, but am not sure what could be written into the plan. That is why I was wondering if I could ask each teacher to hand him a printed copy of his homework and key notes. Do you have any other helpful suggestions?

I am blessed that I think he has some very specific needs remaining, but this 10% problem could result in 100% failure. I need the teachers to understand that he is not able at this point to "get organized", have "perfect binders" or else he loses 5,10 or more points from his grade (besides the anxiety and frustration). They need to recognize that these requests are out of his scope of ability. This is not a discipline issue!

It would be as if I asked each teacher to sing the star spangled banner to each class everyday. Some could do it and enjoy with no problems. Some could get by, but would forget half the words and sound terrible. And then the final group just couldn't do it. They just can't sing, can't keep a tune, can't remember the words, are painfully shy when everyone makes fun. You can feel the stress rise each day they had to do something they are not comfortable or able to do. And.... why put them through the stress when you could just have someone who can sing do it. I don't know, I guess I could think of a better example, but the point is don't put people who can't in positions that are humiliating. We all want to be successful especially for those who struggle with issues each day. Let them concentrate on the work and not the process.

Best regards, Liz (NJ)
Jan 27, 2009
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starstarstarstarstar 		long term SPD thoughts
by: Anonymous

Dear Liz: my heart goes out to you, your son, and both of your frustrations. I went through the disorganization 'dilemma' w/ our daughter, only hers came from ADD.

Have you been able to connect with any of the teachers or counselors at your son's school to have a chat about how you and he are feeling? Even though you say he has been declassified, it sounds like he is still needing some help. Does he have a 504 plan? (that's what it's called in IL) That's for classroom adaptations for students who don't qualify for special ed services, and he would still be monitored, only not as much as in a special ed class....and the classroom teacher would be expected to follow the plan.

I don't know what New Jersey law says, but in Illinois, it's like I said, the law. You may want to check into something like that - I'd talk to the special ed teacher or if there's a department chair, perhaps you could get some advice there. It seems a little strange that your son went from a full blown spec ed classroom to no monitoring at all - is that what I understand? There has to be someone who will listen to what your son's needs are....keep being the advocate for him until you find the right connection for what he needs.

Also, when we were going through all the 'stuff' with our daughter, I'd also try to make suggestions with no luck. I teach in the same district where my children went to school, and it was extremely hard to work alongside staff who wouldn't make the adaptations she needed some times. When she finally began to get teachers who understood what she needed and would truly LISTEN to me about what I knew about her, it made all the difference in her educational risks she was willing to take. She went through high school very well, graduated from college last May, and now works for her college!

Don't give up, OK? I wish and pray the same for you & your son. Go get 'em Liz! Best wishes...Sue
Jan 27, 2009
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starstarstarstarstar 		just a mom
by: Anonymous

Hormones brought on alot of struggles for my child when she reached this age,shes doing OT to help out. best of luck,

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