Sensory Processing Disorder - Oakdale, CT

Hi
I visited a center in North Andover called Kioko Center. Dr Tara McCormick is a pediatric OT. They specialize in Sensory Integration. The number is ###-###-####. I found them to be helpful.
Good Luck
C.

Hi there! My son has a similar problem (in conjunction with some other issues). He has the whole sensory diet thing going on at school also. To get him evaluated though, I had to put up quite the fuss. After the school evaluated him they put a 504 Plan in place. It's like and IEP but a bit different. It's like the step before the IEP. In the 504 Plan they map out what they are going to do throughout the day in regardes to the sensory diet and giving breaks and whatnot. Just putting in writing what they are going to do. My advice to you is to be the squeaky wheel so to speak. That's the only way that the school will do what you are asking it seems. Put things in writing (they have to respond in a certain amount of time that way), even send a copy of the letter to the SAU. That way everyone is involved and something has to be done. I hope that this helps and I wish you the best of luck!

Hi J.,
How ar you? My 7 1/2 year old son was also diagnosed with a sensory processing disorder by a private OT. When he enrolled in public Kindergarten, I let him settle in, approached the teacher and they evaluated him for OT and PT. He was picked up for OT on an IEP, with some sensory work built in, but we were told that sensory processing is delt with theough a "sensory diet" and gave us some home excercises. We already had a home based program for him (he had been in privtae therapy for a year). The good news is that we really have seen good results by providing that steady sensory input to keep him (and his behavior) well-balanced. Feel free to e-mail me with any questions! Best of luck!

Absolutely 110% get him evaluated outside of the school system. It is your right to do that. If you get him evaluated privately then they will not have an agenda. Not trying to generalize here, but school budgets are very tight and I think that would always be in the back of my mind when it comes to funding a child's special needs. I know of multiple cases where the school system will test a child and come up with nothing. The family will have them tested and the outcome is drastically different! One of these cases is my brother. For years his teachers referred to him as lazy. It wasn't until my mom had him tested privately that it was found he was dyslexic and that he had ADD. Children's Hospital did his private eval and they were shocked that the school system said their weren't any disabilities. They said the dyslexia couldn't be any more obvious! Talk to your pedi and get some good advice. Don't stop until you are comfortable with the answers you get. Good luck!

You should speak with your pediatrician regarding this. He/she can make the recommendation for you to have your son evaluated. You should also inquire with your medical insurance company to determine coverage. Many times you are limited as to where you can go to seek these evaluations. Some insurance companies may only provide partial coverage.

Have you requested a full evaluation from your public school yet? I would put that request in writing, deliver to your special education department, request that they date stamp the request and provide you with a copy. This letter should list all of your concerns and what current modifications they are providing. They must respond within I believe it is 30 days.

In the meantime, I would still pursue the outside evaluation through your pediatrician. It takes a very long time to get a full evaluation. I have heard that the waiting list for Children's in Boston can be upwards to a year. It is better to start the process now. The school will not do anything over the summer, so you may be faced with the process starting in September, which will delay your son from getting the services/modifications he needs greatly. I would be very proactive with this as cities and towns are currently crunching numbers to meet reduced budget requirements. An IEP is a legal document which means they must provide the services that the team determines the child needs regardless of the budget. In other words, the town may not be so willing to say a child requires services through an IEP if they can avoid it. This is the reason I say to get both evaluations, and in the interest of time, don't wait to see what the school is going to say. Be advised, you have the right to receive a copy of your child's evaluation results within 48 hours of your meeting with the team, but you have to request it in writing ahead of time. Once you know that evaluations are being done, which you will know because you have to sign permission slips, put in your request in writing, delivered to Sped department, date stamped and you retain a copy, to receive the results of those evaluation 48 hours in advance of a meeting. This allows you to review their results prior to the meeting. Good luck.

J.,
Your situation must be very frustrating. It appears from what you have written that the school does not feel he has a special need that requires a specialized education (IEP). However, I am curious how they know he does not need specialized instruction without having done a core evaluation. As a special educator, I think your concerns are valid. That's not to say I think he has a special need, but I do think that the behaviors he is demonstrating need to be addressed. Sensory processing disorder is often paired with something else. Some professionals believe that it is not a disorder on its own. It is a symptom of something else (ADD, anxiety). Have you asked them why they don't feel he needs a team evaluation?

I think you have several options here:
1. Ask them to collect data on the behavior at school to determine the function and purpose of the behavior-all behaviors have a purpose. If all of you can evaluate the data you may see a pattern for his sensory seeking behavior, which will provide information on how to manage it effectively.

2. When you meet with them next week inquire about why they don't feel he needs a team evaluation. They will most likely tell you that at this time it is not impacting his performance in school, which without formal testing can be somewhat subjective. Especially, considering that the educational demands will increase next school year along with the duration of time he will need to remain on task.

3. If they continue to think he does not need an evaluation but you feel differently, request one in writing to the school and they are required to perform the evaluation. One consideration to this, if a child gets tested to early they may not qualify. Basically, the testing difficulty increases with age and grade. Often times a child is showing some delays, but it does not show up in testing early on because the testing was more developmental rather than educational/skill based. This could be the reason they are holding off.

4. If you decide to go forward with the evaluation and he does not qualify for special education, you can discuss a 504 plan which is basically an accommodation plan. The 504 will provide the written plan that will follow him to 1st grade.

5. If after the evaluation you are still not satisfied, you could have him privately evaluated. These findings may or may not be considered by the school. Often times outside evaluations are very thorough, but the recommendations are not always conducive to the school environment.

6. Consider having a conversation with your son about the difference he notices between preschool and kindergarten. You many even consider asking him why he is engaging in a certain behavior, when he is doing it. For example, "why are you licking you hands right now, what are you feeling?”

I hope I did not write too much. The best advice I can give you is to follow you instincts with this. He is your son and you know him better than anyone else. What feels right to you?

Take Care and good luck!

I have also written you a private message with my contact information if you want to touch base more.

J.,
I would bring him to his pediatrician. What you are describing sounds like Asperger's Syndrome. (A mild form of Autism). Usually it appears in kids that are about your son's age. If your pediatrician checks him out and recommends intervention, then the school has to have a written IEP. If the school initiates the process giving him a 504 plan, then they can terminate it at any time. I know this from experience. The other option that you have is early intervention programs. Most states have programs that screen children from age 3-6 for developmental delays or disorders that are free or low cost. I know that New Hampsire and Vermont have these programs. They can assess your child and set him up with a program to help in school and at home. Either way, I really recommend that you have him checked by a doctor. It is worth it's weight in gold to have the reassurance from a medical professional about what exactly is going on. Good luck to you and your son!

So glad to c the overwhelming responses for you! We talked w/ our ped, we use ccmc for OT for our son. they are wonderful!!
You also need to be sure the school is aware and they can do what ever testing they need to. This way your son can get OT at school, this will help break up his day and enable him to focus is a regular classroom. The school has to help you by law, but you need to ask!!!!! sometimes even push!!!!
Good Luck!!!

Hi J., I have worked as a certified OT assistant the past twenty odd years, with many of them in pediatrics, and much of my case load were children with sensory motor processing challenges. First, let me say I agree that you need to have your son looked at by professionals. Boston Children's Hospital is a great place. There is also a strong OT base in Conn. Call that private college that begins with 'Q'...can't recall its name ;) Once he is evaluated, you can begin to better support him, naturally. Your description of your son's 'chewing and licking' behavior is typical of children that seek extra sensory input through what is called the 'proprioceptive' system. It consists of the skin, muscles, tendons...I absolutely realize this is not the forum to delve into all this, but it definitely is the place to share that as much as I agree you should seek professional insight for your son, I also wish to instill in you that this is NOT a death sentence. Take a deep breath, acknowledge you are on the right track, and keep moving forward. As an older mom of twins +, one of my daughters had moderate sensory issues. I was told that she would have 'neurological challenges'. I was a young OT back then and fortunately recognized many of the early signs attributed to what is now called 'tactile defensiveness', and set up activities and routines in the home to address it immediately. Now, at 25 she continues to 'seek out' hard work activities through her personal endeavors (which as it turns out, is VERY healthy;) and continues to avoid certain daily tasks she finds 'disturbing' to her skin such as light housekeeping chores ie. Ha ha! Lucky her! She also excelled in school. She graduated early from HS, was a VIP athlete many times over in her four years there, and again through College...where she graduated early there as well, to go on to get her Masters, where she is now a traveling OTR. Not too shabby for a child that was immediately labeled 'neurologically impaired' an hour after she was birthed, right? You get the picture, so 'hang in there!' and don't be discouraged or let 'worry' enter your circle. VERY briefly, from your words: "Lots of chewing or licking his hands, objects in his mouth during school. It surprised me since he never put things in his mouth as a toddler! He loves to crash into things at home, and he doesn't always seem to know his own strength. He is a picky eater and has never liked loud noises." it appears you have a little guy who has difficulty getting feedback from his skin, muscles, joints, (proprioceptive system) and compensates this by SEEKING deep pressure through crashing, chewing, etc. "Not knowing his own strength' is the outward MOTOR response to an under-active inward SENSORY system...he needs MORE input from his outer environment to give him the sense of groundedness, if you will, to his inner environment. Chewing his clothes becomes a coping skill, and helps ground him when he needs to focus...one of your friends mentions the Out of Sync Child book...great place to start to read about the different body systems...but remember J. to 'take what you want, and leave the rest behind'... I absolutely want you to honor your instincts here. You can also explore alternative therapies. I am a cranio-sacral therapy practitioner as well...I absolutely encourage you to do some research with this in your area. I know of many moms that have worked with Natureopathic Docs, and have been very pleased with outcomes, so don't overlook that possibility as well. You have been very observant so far. Did I read somewhere you are a part time PT? You know you need to treat the individual then, and not the diagnosis, right? This absolutely applies to your own, too. ;) Please feel free to contact me personally should you feel some of what I have said resonates with you. If not, I wish you best regards. Be Peace, N.

If you need some recommendations or support you can go to your local special ed parent advisory council. The one in Framingham can be found at www.f-sepac.org. It's a parent run organization run by parents of special needs kids and it can be a great local resource.

You have gotten a lot of good advice already. I would do both - request a full evaluation in all areas of suspected disability from the school, and get a private evaluation at somewhere like OTA in Watertown/Wakefield or Project CHILLD in Beverly. Although SPD is not a qualifying diagnosis for an IEP, up to age 9, a child only need show a developmental delay that impacts his ability to make effective progress in the classroom to get an IEP. Do you have books like, "Out of Sync Child" and "Raising a Sensory Smart Child"? These are going to be great resources for you at home as well.

That's awesome that the school is already doing so much to help. It's not really up to them whether or not they do a full evaluation. You have the right to request it and they must comply. The only thing is even if he is dx'd with SPD, he still might not qualify for an IEP since SPD is not a medical dx. Anyway - my son has sensory issues, but also has ADHD and is on the autism spectrum. Good luck! Feel free to email me if you need more info! I have to take off to work now.

Hi,

They absolutley have to evaluate him if you request it in writing. They can offer an opinion but can not try to convice you or tell you that he shouldn't be evaluated. You must put your request in writing and send it to his teacher, the sped director, the OT and the Pricipal. They have to evakuate him and you should not have to go out side of the school to get it done.
You can see his Pediatrician and have him make some suggestions and he may have a refferal for you. Unless it is addressed it may get worse. And I don't think that he was getting everything he needed in preschool. He has grown which can change how he operates. The demands on him as a student have increased which can change how he copes. So many things go into how a kid deals with the world and any change in his world can cause how he performs to change.
I am a Special Ed. teacher and if I can help any further let me know. Good Luck!
M.

My youngest is a sensory seeker and after reading the book the out of sync child martial arts is mentioned as being very very beneficial to them and one of the mom's at playgroup also has a sensory seeker and she says a bounce house is the best investment you can make they need that outlet to get it out of their systems. If your school doesn't give you the full evaluation after you request it and you have to go outside the school for an evaluation the school is required to cover the cost so if you mention that to them you might get results faster.

If you want some of the modifications to put in writing for next year's teacher there may be a way to do that if you talk to the school principal or special ed teacher. I would request a full evaluation (OT, academic, psychological ect), if you ask for it -especially in writing- they have to do it. Do it now because it will take months for the whole process to occur, that way next year they can give your son what he needs. You can look into private evaluations and look for a clinic in the area that specializes in sensory integration to get an evaluation that directly assesses his sensory needs. It can be very difficult to get a child with sensory processing problems to be identified as needing special education support at school as often schools do not consider it a qualifying problem to receive support unless there is some other issues as well. (That is why you request a full evaluation, just in case they find something else.) This is because sensory processing disorder is not yet recognized in the medical community- they are working to get this recognition but it is a process. If you do choose the private route only, have a meeting with the school after you receive the report to go over any recommendations with staff working with him. Good luck!

It seems you have already received some good feedback. The school must evaluate him if you request it. However, it will not be as thorough as a private evaluation. Your goal is not to have him succeed just in school, but in life as well. Knowing exactly what is needs are will give you a life plan.

Dr. Steffan Fuller is a great Neuropsychologist who will see children almost immediately. the longest wait for him is 2 weeks. As opposed to months elsewhere.
Steffan Fuller, PhD
68 Leonard St
Belmont Center MA
###-###-####
Children have fun during his testing. Check with your insurance, you will need precertification.

Good Luck!
C. Lee LICSW, BCD

HI J.- I have a daughter who also has some issues with sensory disregulation, and sensory processing. She's now in the 4th grade. I took her to OTA in Watertown when she was in 2nd grade to have an evaluation done. It was very expensive, and hard to schedule, as they're a very popular place to treat and diagnose this. Insurance doesn't cover it, BUT, we did learn an awful lot about what's going on with her that we hadn't previously understood. We learned a lot about a sensory diet that would help her, in particular, and many "practical" things that would help her in different situations (like grocery stores, or crowded parties). She also went through a summer of sessions at OTA to help her integrate things, and help with motor planning. Again, it was very expensive, and not covered by insurance, but I think it did help her. We can not afford to have her continue to go, but she really liked it.
I'd go with the free OT eval you get through the school. If you're not satisfied, go with OTA. They've done some great things for a great many kids, and adults.
Best of luck!

Hi J. -

My son also has SPD - I went to his pedi armed with the checklists and asked him for a referral to an OT. We also talked about ADHD ( the two usually go hand in hand) but decided to approach the SPD first. Our insurance covered a number of OT visits fortunately. By the end of the first visit, I knew this was what he needed - when he started school a few weeks later, I let his teachers know what was going on. He also had a speech delay - diagnosed in preschool - so he was able to receive OT services at school. we continued with outside OT as well, having all these resources in place has helped him tremendously. He has come a long way since the beginning of school and no longer qualifies for sp. ed. so I fell back on the ADHD evaluation so that he may continue to receive OT at school. We are very lucky to live in a district that works so well with the parents and child. One other thing that is really important is to help your child recognize when he needs some interventions. Continue to be his advocate but help him to advocate for himself. Our son will tell us if he really needs to bounce or be brushed or whatever - it helps a lot that he's able to do that. Good luck!

Hi J.
My friend Regina has a 10 year old son with Sensory Integration Disorder. I can connect you two so u can "pick her brains" let me know.
J. H