Sensory Processing - Diagnosis and school??

[jackskellingtonsgirl]

Hello! I am hoping some of you might have some insight and suggestions for me!

DS13 was diagnosed with inattentive ADD in 4th grade. He is now in the second semester of 7th grade. Before now he has been an A/B honor roll student. This semester he is making an A in Band, and he is lucky to be scraping low C's out of his other courses. When we ask him what's wrong we get "I don't know."

The teachers have been less than helpful. The counselors revoked his 504 at the beginning of the year because his grades and test scores were so high. They said he doesn't need a 504. He takes Focalin XR, and we (after a meeting with the Dr.) just increased the dose over Spring Break hoping it would help get his grades back up. So far it has not helped.

Last night he said he doesn't want to be friends with anybody, he wants to be left alone. When I pushed him to clarify that, he said his friends annoy him. When pushed a bit more he finally said he just gets overwhelmed and wants time to himself to clear his head.

As a preschooler he was tactile defensive and also had some auditory defensiveness. I thought he had outgrown it, but now I think he has some sensory issues that need to be diagnosed so we can treat them.

Anybody know if the school district can test for sensory stuff, or do we need to go private? What sort of professional diagnoses sensory things? We have a pediatrician and a diagnostician that we work with on the ADD. What sort of things can be done as far as modifications? He has a TERRIBLE time remembering to turn in his completed work, which results in lots of 0's. Someone on another thread mentioned her high school age DD has sensory issues and forgetting to turn in work is one of the "symptoms".

Please share your stories! Thanks!

 

[Piper]

As a teacher, I wouldn't trust the school district to test for anything!! I have seen too many children who need help just blown off.

EX: a child with echolalia, severe meltdowns, sensory issues, perseverating on one thing & more--The diagnostition said "Oh, he's just spoiled"--after a 10 minute observation -- refused to test. Several years later, the parents finally persued a private diagnosis--high functioning autism.....years of proper instruction lost!

A child who couldn't even match two objects out of a group of 3, speech delay, motor delay, no color ID (after months of teaching)--refused to test saying that she was just immature (child is now in life skills and thriving)

A child who threw up 5 -20 times in a 3 hour period (daily), no social skills, sensory avoidance, poor fine and gross motor skills -- "Oh, he just has a speech delay."-- now in special ed and doing well

All these examples are from years ago (different classes) in case the "teacher police" flame me.....but I could give you several current ones. In my experience, the school district is really failing our kids with challenges.

If it were my child, I would get private testing. If you can't afford it, do searches for funding..there are many places that test based on income.

 

[jackskellingtonsgirl]

Our private diagnostician thinks it would be better to start with some counseling sessions before we do anything else. She said we can go to an OT for an evaluation, but the treatment for SPD is a long process that may or may not be successful. She gave me the name of a guy, so I will give him a call on Monday (they don't office on Fridays) and see what he has to say.

 

[PoohBear543]

My DS is 4 and was diagnosed with sensory processing disorder when he was almost 3. An occupational therapist makes the diagnosis. He is a little older then when most are diagnosed but alot of kids are mis-labeled as having ADD or ADHD when it is really SPD. I would avoid reading information online or books until after the eval because part of it is a questionnaire and if you read a lot of info it could affect how you answer the questions. If he is diagnosed with this then I would read "The out of sync child" It's very interesting and informative. Good luck and beware most people don't believe it is a true disorder, (myself included at first- I'm even a PA) but since starting treatment, my son has truly improved and is now thriving in school!!!

 

[KirstenB]

Our schools don't do diagnoses. They will provide services, and will assess a child to see what the child's needs are, if there is a delay.

Even if they did do diagnoses, I'd go the private route in addition to that. My reasoning is based on the fact that the person likely to do a sensory dx is the OT. He/she already has a full day, working with kids who have existing IEP's. Here it might take a while to get "on the list".

Although I like our school district, it is small and rural. We have friends who've moved into the district, and it has taken 1-2 mths to get their child assessed for speech therapy. Then, the IEP meeting has to be scheduled, etc, taking more time.

 

[jackskellingtonsgirl]

After reading the bio of the guy the diagnostician suggested, I have decided he would not be a good fit for us.

I have a message in to a neuropshychologist and I will see what his recommendation is before I do anything else.

I will say I am tactile defensive and have some of the auditory things, too. I recognized it in DS when he was little, then I realized my aversion to being rained on or splashed or have air blowing on me is all the same sort of thing.

 

[LMC]

The reason they are telling you it may not be successful is because these type therapies get the most benefit being administered before age 6 yrs. I'll never forget when my son was 8yo and the doctor said "if he had gotten treatment"...blah blah blah, and I told him I tried for many years to get treatment and to get people to listen to me but they didn't so that was where we were then. But a neurophsyc should be able to help you. The problem you may have is they will want to do a full eval (you may or may not want that) and it can be very expensive. Insurance may or may not pay for it. I planned on insurance not paying so I was prepared to pay.

Our private diagnostician thinks it would be better to start with some counseling sessions before we do anything else. She said we can go to an OT for an evaluation, but the treatment for SPD is a long process that may or may not be successful. She gave me the name of a guy, so I will give him a call on Monday (they don't office on Fridays) and see what he has to say.

 

[bookwormde]

Discharging a child from a 504 or IEP because of high grades does not follow the regulations unless it can be clearly demonstrated that the non academic needs that were involved have “disappeared”.

Ask for a complete new IDEA evaluation for your child.

Schools do not make diagnosis, they just create educational classifications, so in addition to the school evaluation if might be a good idea to contact a developmental pediatrician for a medical review. If the diagnostician you work with knows about the sensory differentials and has not recommended an auditory processing evaluation then it is time for a new (competent) one.

You should also be aware that Focalin XR is not labeled for ADD (only ADHD)

Special concern should occur if you start to see any signs of aggression.

Here is a link to the prescribing information; you should reread it in light of your current situation.

http://www.pharma.us.novartis.com/product/pi/pdf/focalinXR.pdf

bookwormde

 

[BeckyScott]

All these examples are from years ago (different classes) in case the "teacher police" flame me.....but I could give you several current ones. In my experience, the school district is really failing our kids with challenges.

Thank you!

Regardless of whether or not it's late for intervention, getting an outside diagnosis would put you in a better position to get accomodations in place. And really it's never too late for intervention, it might be better to do it earlier but still some progress can be made. For an older child, sometimes even having a diagnosis validates them, that there's a word for how they feel instead of just being "dumb" or "a brat".

Oldest DS's IEP has a staff member going over his planner with him daily and making sure everything gets loaded into his backpack, etc, as one of his accomodations, along with extended time, alternative test setting, and a few other things. His IEP is for OHI, which is the category ADHD would fall into if you had an IEP for ADHD. His grades were scattered like your son's, and one of the issues brought up was that he forgets to turn in things, loses things. They did LD testing and no LD's showed up, so the IEP wasn't based on that. I was concerned that if we didn't get something put in place now, next year he'll be at a different school, changing rooms between classes sometimes, and that whole disorganized thing would get 10 times more problematic.

 

[WheeledTraveler]

I agree with bookwormde that you need to also start meeting with the school about getting his 504 back because grades are not a reason to revoke a 504 and I'd say that if that was their excuse then he's certainly proven that without the 504, he doesn't get the grades and needs it back again. It sounds like they were trying to save themselves hassle and made your kid a casualty.

I also agree with the others that ultimately you're probably better off going private. It's worth asking your son's teachers (if they're the helpful observant types) if they've noticed anything, but it sounds like they may not be helpful.

Good luck!

 

[LMC]

With my ADD son (he is in 8th grade but this was implemented in 6th), I have it written in his IEP that the teacher or aide MUST write down his homework assignments in a Homework of space to use as opposed to those planners the schools give out. If it is not written in there, he is not responsible for it plain and simple until it is written down. He can't remember one minute to the next (has dyspraxia) so there is no way he can remember all his HW, teacher comments, etc by the end of the school day. The teachers are also aware that he has problems turning in assignments and after two years of re-doing assignments that I knew we did (cause we did it together as homework) they now accept it as "done" if I have signed off on the homework binder. This was a matter of contention between them and me but he was to work 10 times harder than the average student, and then to ask him to do it again because he lost it (and they don't want to provide a one on one aide although three of our doctors says that what he needs to succeed) then they have to allow some consessions. There are really simple things you can incorporate into the 504 plan and if they refuse to give another one, then get documentation from your doctor and notify them in writing that you want a re-eval done and their reasons as to why they won't provide the 504. When you get that you call a meeting and take their response with your doctors recommendations and tackle it from there.

 

[jackskellingtonsgirl]

Thanks to all for your input!

I am still waiting to hear back from the neuropsychologist (which is what I get for contacting him on a Friday prior to a holiday).

At the 504 meeting in October, 3 out of the 7 teachers showed up. They said they see no signs of inattention in their classes, and that was good enough for the counselors to revoke the 504. Um, hello? He is on medication to improve his focus. When his symptoms are properly managed he DOES focus! I felt railroaded by the counselors, and the teachers were no help.

The school personnel (ALL of them) keep telling me this is just normal 7th grade boy stuff. This just happens, part of growing up, not a big deal. Yet every article/book/pamphlet I have EVER read says a substantial drop in grades is a red flag for SOMETHING. I have never in my life heard that bad grades are normal 7th grade boy stuff.

LMC - My DS loses things, too. Things he does IN CLASS. Makes me crazy.

This is what I found in the prescribing info for Focalin XR:
"For the Inattentive Type, at least six of the following symptoms must have persisted for at least 6 months: lack of attention to details/careless mistakes; lack of sustained attention; poor listener; failure to follow through on tasks; poor organization; avoids tasks requiring sustained mental effort; loses things; easily distracted; forgetful."

Focalin XR was the third med we tried and it made a HUGE difference the first year he was on it (5th grade). 6th grade wasn't bad, either, despite moving to middle school and having 6 different teachers. This year started off OK, but now we have these LOW grades. So we'll see. Hopefully the neuro guy will get back to me early in the week.

 

[LMC]

[[/CENTER]LMC - My DS loses things, too. Things he does IN CLASS. Makes me crazy.[/QUOTE]

This was happening to my DS too and I told the school system that since they did not want him to have a one on one aide, then the teacher or shared aide was to make sure he did his class work. That there was absolutely no reason his class work is not being done unless he is totally lost (again the need for the aide) but that I NEVER wanted to see a zero on class work again as that is their job and I am not sitting in class with him.

I have enough documentation and testing to go to mediation and get a one/one aide but the principle did not want DS to be pegged as being different w/ an aide with him all day (I agreed as DS agreed he did not want to appear different, although it is obvious) so they are to make sure he is in inclussion classes and get the help he needs.

I know with the IEP, they are to provide "written prior notice" when they take a drastic change such as cancelling a plan. You need to do research and if the same IDEA laws apply to the 504 then send a letter to the special ed coordinator stating that they were suppose to give you written prior notice before that meeting to inform you of the changes they were going to propose and WHY. Now they have to put it in writing as to why they wanted to cancel the 504. If you have testing or other documentation or dropping grades that support an argument to not discontinue the 504 then I think you can easily get it reinstated at that point.

 

[jackskellingtonsgirl]

I spoke to the neuropshychologist. He was SOOO nice, really listened to my concerns. I am going to take DS in for testing ASAP - the Dr. was in the car when we were talking so he is going to check his calendar and get back to me.

5 years ago DS was hospitalized for some weirdness - his hands were shaking, he had strep, and they found a lesion in his brain. We think all 3 were unrelated - like I said, weirdness. Anyway, Dr. said the lesion may have caused cognitive impairment and that could be part of the problem with DS now. He is going to review the MRIs and see where the lesion was, how large it was, etc. I think having DS retested will be tremendously valuable. And then we'll see where we go from there. AT the very least, I will have new test results so I can tell the school I want a new 504.

 

[LauraVV]

Be careful with neuropsychs. Don't let them release any results until AFTER you've read the whole report. They can be worth their weight in gold OR they can sink your ship. I'd make sure you have gotten recommendations from others about your neuropsych. My kids have been to four different neuropsychs. Only one was even marginally OK.

Have you taken your child to an audiologist who specializes in CAPD?

Your school teachers cannot just cancel a 504.

Ask your PCP for a referral to a good OT for diagnosis and treatment. You can then get the SID (or whatever they call it today) diagnosis and treatment. Schools are not good resources for testing. Remember, for the most part, they employ overworked PT and OT techs, not the actual therapists (or maybe one therapist for the whole district).

Your health insurance should pay for this testing. You might wish to look at it under both health and psych benefits.

 

[jackskellingtonsgirl]

I am scheduled for an intake meeting with the neuropsych in a couple of weeks, then he will see DS for testing the week after.

This Dr. did come highly recommended by other moms. He is very highly respected among his colleagues and the hospital he is affiliated with is top-notch. I feel very comfortable with our choice.

We'll see what he has to say and go from there. I know when we had DS tested the first time that the diagnostician gave the report directly to me, and I scheduled a meeting with the school. It was my choice to share the results with them.

The guidance counselors (3 of them, who sort of ganged up on me) revoked the 504 because they claimed DS OBVIOUSLY didn't need it. The teachers who bothered to come to the meeting (3 out of 7) said they saw no evidence of ADD.

DH and I are discussing whether we want to mess with attempting to run it through the insurance or not.

 

[LMC]

If it turns out your son has a brain lesion (brain damage) or TBI (tramatic brain injury) from what they find on the MRI then he can go on an IEP under other health impaired. Your new doctor may find some things that qualify your child for an IEP and you may get better results going that way than on a 504. Just be sure to ask alot of questions about school/iep's etc as these doctors usually have alot of knowledge in that area. Sometimes they do independent evals for school systems, or even assist parents in mediation with school systems so he may be a goldmine of information for your when you get your results back.

 

[jackskellingtonsgirl]

I met with the neuropsych this week, and DS will go see him next week. He is very thorough and asked me about things the original diagnostician never touched on. He has a good idea of things he wants to look at and talk to DS about, so I think this will be good.

In the meantime DS has managed to pull himself together somewhat. Maybe it WAS just "normal 7th grade boy stuff". At any rate, I want to pursue this round of testing because it won't hurt. I would hate to head off to 8th grade without a leg to stand on if I decide to push for a new 504 or IEP or whatever.

 

[SpecEdismyLife]

I think you are taking the best steps. As someone with a special needs child, as well as works with a special needs child in the school district, I can tell you what previous posters have said: never trust a diagnosis given by any school without getting a second medical opinion from an actual neuro-psychologist or a medical doctor. They hand out Autism diagnosis at our school like you wouldn't believe and I can tell you, some of these kids do not fall on the spectrum but appear to be that way due to questions on standardized tests, which is all these districts use to evaluate them for services. This is the same with ADD and ADHD and dyslexia. I also have a 13 year old boy starting 8th grade next year and just lately he has been spending more time on his own and has become more sullen and crabby. I'm thinking puberty, oh joy! You are making the right decisions in regards to getting outside opinions, good luck to you!

 

[GraceLuvsWDW]

Well, my DD is 5 (almost 6) and although your son is much older I just feel I have to chime in here. My frustration with the system is that there just isn't any defnite diagnostic tool for any Dr to say "that is definitely what the problem is". That's why you hear so much about misdiagnosis, etc. My DD sees a Developmental Pedi, a regular Pedi, an OT, and a child Psych all with differing opinions on what the "real" problem is. It is so very frustrating. I feel like I've already been on a wild goose chase of trying this med, then this med, and on and on most of the time with no help and usually with additional "side effects". It is a very frustrating ordeal, as I am sure most all of you know.

My DD is tactile defensive one minute and tactile seeking the next. She is practically anti-social because of it as she usually ends up accidentally hurting others due to her seeking. Her teachers are frustrated, I am frustrated and most of ALL she is frustrated. I just want to help her have the best life possible but I fear this "realm" of disorders: SPD, DSI, ADD, DCD, OCD is just nothing that can be accurately diagnosed. I hope and pray for a change in the future and also that SPD will be recognized in the DSM as a disorder.

Until then, we are all just trying to do the best for our children! And I truly believe that we, as parents who live with the child every day, are the best judges of what might be the problem and what might help. You can listen to advice and research on your own but you must rely on your intimate parental knowledge of your own child to make the best decisions.

Good Luck! I hope you get some help and your son continues to improve!