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5757880 tn?1395578022

Does My Son Have SID?

Hello All!

Currently, my 8-year old son is diagnosed with ADHD, rule out PDD and just had an O/T evaluation at the end of February.

This was the final summary of that report:

"CHILD demonstrates poor core strength, or postural strength, which is the foundation for attention, concentration, balance, coordination, and self-regulation.  CHILD scored in the bottom 6th percentile for overall motor proficiency.  He demonstrates poor fine motor skills, poor upper-limb coordination, decreased manual dexterity, decreased attention, and poor visual stabilization.  Deficits in attention, motor skills and visual skills will cause increasing difficulties in academics for CHILD, as the curriculum will get more demanding with each grade.  CHILD presents with poor modulation of movement and auditory input; under-responding at times while over-responding or becoming overwhelmed at other times.  He also demonstrates touch sensitivity; often avoiding or over-reacting to this type of input. CHILD is distractible; displaying a pattern of directing his attention to whatever stimulus presents itself, drawing his away from the task at hand.  Because of these issues, he struggles to tolerate the influx of information that is presented throughout his day. Occupational Therapy services are recommended 2x/week to address the above stated issues to enable CHILD to reach his full potential in daily life."

I have replied by to the O/T evaluator to see if she thinks my son has SID or SPD and I'm waiting to hear a response back. We are hoping that all the information we are compiling will be presented to my son's school so he can be tested and receive an IEP.

From this information, does it seem he has SID/SPD? I know no one here can formally diagnose my child :) but some insight to this information would be great.

Thank You!
12 Responses
973741 tn?1342342773
COMMUNITY LEADER
Hi there.  Oh yes.  Those are all symptoms of sensory integration disorder.  I will tell you that my son also had poor core strength.  They do these tests like how long they can hold a super man pose (lay on stomach and raise head and feet off ground with arms out like super man), etc.  

We began OT and they give things to do that improve this.  We took it to heart and honestly, we worked on it every day.  My son is now well into normal and actually for some motor tests is above average.

And the most important thing he got out of his sensory activities is that it regulated his nervous system.  He was calmer, more focused, better organized in thought and in general, etc.  

My son swims competitively.  He's now 10.  His main season goes from September until the end of February.  So, this month, March, he hasn't been swimming.  His summer season doesn't start until May 1st.  So, he's been a bit energetic and edgy.  My husband took him to the Y on Sunday to swim for an hour.  He came home feeling very calm.  I was talking to him last night (Monday, day after) and said something about how swimming just is so good for him overall.  He said "today was a lot better at school because I swam yesterday."  HIS WORDS.  It does that much for his nervous system that he can feel it and verbalize it!  

anyway, I mention that because that is how important the activities for sensory that you'll be give are and the improvement that you can see with your own two eyes.  

Now, our OT specialized in sensory which is really awesome so hopefully you can work with one who does as well.  

But from what the report says, that is pretty classic sensory.  Some just think it is touch or loud sounds but it is so much more.  visual processing problems are an issue and fine motor, core strength, and what is going on internally are all huge parts of what makes sensory difficult.

When my son's nervous system isn't regulated, he describes his thinking as total chaos.  So, keeping him regulated and now that he is getting older, teaching him how to do it himself is really important.

Let me know what you think of what I've written!
5757880 tn?1395578022
Hi specialmom!
Thank you for replying  I appreciate it.

The place that handled the OT evaluation is willing to do therapy sessions with my son; however, they charge $50.00 a visit and they want to see him two times a week. So, with that roughly being $400.00 a month, there is no way we can afford that. 

I currently am waiting for the OT evaluator to respond to an email I sent her regarding the rates, that I could bring him in once or twice a month but also do an intensive home program also with working with a chiropractic neurologist.

Last night, at the wraparound meeting at the school they realized from the OT evaluation, that there are definite issues regarding my son and when his pysch fills out the forms, they will begin looking at testing him formally for an IEP. The only drawback to that is the OT person at the community schools roughly saw my son for 30 minutes while in class and told us he was fine, obviously she was wrong and I’m uncomfortable with the idea of her working with my son.

Right now my son is involved in Therapeutic Horseback Riding (will end in 9 weeks) and also involved intermittently in Taekwondo (we can go at any time, but due to work schedule, evaluations, wraparound meetings, accidents that risen with myself and husband, sons lack of focus we haven’t been attending as regularly as we should)

We were thinking about looking into some DVDs on Yoga, to see if that might help him with the sensory issues as well as building his motor skills.

Do you know of other activities we can have him get involved in that might be helpful?
973741 tn?1342342773
COMMUNITY LEADER
There are lots of things to do for sure!  First, so glad you have him in karate type of activities.  That is excellent.  I've read a lot about that being very beneficial.  I have not put my son in that as of yet as I think he'd always have an interest and if something else gets tossed aside that he does, that is my go to thing.  But that is excellent that he is doing that.  I've heard good things about Yoga as well.  The breathing portion of it is excellent for sensory kids especially as well as building the core strength.  

Any time you can get him to lay on his stomach and do something is good.  That builds his core.  So, play a game and say that everyone has to lay on their stomach to play.  It could be a simple game of crazy 8's and he might not even know that the real thing you are doing is working out his core by laying on his stomach to play.  Do crazy animal walks---  make sure to incorporate crab walk, bear walk and leap frog into them.  My son has often done  crab walks to calm his nervous system down before school.  

If you can sign him up for swim lessons, do it!  Honestly, that has been THE best thing for my son.  He's like a different kid the day after he swims.  It's very noticeable.  

If you can do it, a trampoline in the back yard is wonderful!  We got one and my two kids (one without sensory) jump on it every single day.  Well worth the 400 bucks it cost!!  Daily exercise and entertainment. All their friends like it when they come over too.  We have rules surrounding it to keep it safe and I'd say if you are going to have other kids over to jump, get a bigger trampoline.  We also have a mini trampoline in the house.  It was very cheap at KMart  and one I think is meant for exercising on.  But it works for some quick jumping for my son.  

A calming exercise is to have him lay face down on the ground and take a big exercise ball and run it up and down him with pressure/weight.  he should love this and it is very relaxing.  You can also take pillows and place them on him and push down.  My son likes it from head to toe with lots of weight.  Sensory kids usually do really like this.  

I'll think of some more and get back to you!  
5757880 tn?1395578022
Thank you for all the ideas!

I did speak with the OT place and they stated they couldn't give the diagnosis of SID or SPD. They said that would have to come from the pysch doctor. However, the pysch doctor informed me that the OT place is the one to diagnose him with SID/SPD because she only handles the "pysch" part while they handle the physical part.

So now what?
973741 tn?1342342773
COMMUNITY LEADER
You may have to find another OT.  Here is how it worked for my son----  he was observed by a social worker who worked by grant on a case by case basis at my son's one 2.5 hour a week preschool (how long he went at that time).  She said she thought sensory was at play.  We have an occupational therapy center here in my city that specializes in sensory.  I called and made an appointment.  I called my pediatrician who is very pro kids and said that for my insurance company, I needed a referral.  She gladly gave it to me.  My son was evaluated when he was 3 and it was inconclusive.  We did not proceed.  Then at 4, symptoms increased and we had him evaluated a second time.  THAT time there was no question.  The occupational therapy institute where we went diagnosed him and sent it to his pediatrician who wrote it in his chart.  Done.  Now, 6 years later, I was asked for a doctor's letter that he was diagnosed with sensory integration disorder to receive some help with something at my son's school so I called his pediatrician who wrote a letter that stated "he has been diagnosed with sensory integration disorder in X year and received occupational therapy, . . . .  (blah blah blah)".  

So, it is common that OT"s do diagnose specifically and your doctor signs off on it.  Our OT wrote lengthy reports to our pediatrician on what his sensory symptoms looked like, what he needed help with, and what they were going to do and they did work as a team from the diagnosis on.  Our OT then sent reports from then on throughout the 6 years he did OT.  

What about talking to your pediatrician who should be kind of overseeing everything or involved in some way??  
5757880 tn?1395578022
I would love that but when I speak to her or her nurses lately, the response is, "You should be open to what the pysch and OT evaluator suggest". I think she has basically washed her hands over the whole thing.

Honestly, I have a feeling she thinks I'm a hypocondretic in regards to my two sons (one with the diagnosis of ADHD and the other has a severe peanut allergy). I knew there were issues with both boys, but I got a lot of, "They are just boys, this is how boys act, blah blah blah"
I think I may have to find a new primary physician too. Her staff is very condescending.
973741 tn?1342342773
COMMUNITY LEADER
Well, I'd consider a new doctor.  Period.  That is kind of irresponsible to wash their hands of your kids and situations going on with them.  You ARE listening to what the evaluators are saying . .  .  no one is denying that your son has a sensory diagnosis---   you just need someone to put the rubber stamp on it.  

In truth, the medical diagnosis that is official came into play in two ways for my son.  1. insurance.  You need someone to sign off on his need for services to get insurance to cover it.  And 2. school.  That is the starting point for a child to begin to have some accommodations through the school system.  For my son, it is things like the ability to use an alternative chair and things like that.  

Sensory doesn't respond to medication so what possibly could be your motive for attempting to have this diagnosis for your child??  Strange to me.

And I would not allow my doctor to minimize my concerns.  I'd change doctors and find one that understands better what sensory is.  Ask friends, neighbors, etc. what pediatrician they use and switch.  It's that easy.  yes, professionals handle the care of your child (psych if there are psychiatric issues and OT for the sensory problem) but your pediatrician should be following the overall care of your child.  

It's hard to be the advocate for our kids when the professionals aren't cooperating but squeaky wheel gets the grease.  I'd ask the OT point blank "does he have sensory"?  If yes, then ask them to put this in a letter that through their evaluations, they determined he has sensory processing disorder and have them send it to the primary care doctor and the psych.  Now, that's hard to ignore.

Is there some kind of hold up due to lack of paper/coded diagnosis or can you still receive treatment??  
5757880 tn?1395578022
I guess I'm looking for the diagnosis for the school. There has been pushback on testing him for an IEP, OHI and I'm trying to show them that there is an issue and we need him to get some help.

When they saw the report on Monday, they seemed more receptive to my pleas, but now I'm waiting for the OT to respond to my email I sent them last week on some questions I had about the report. Also, the pysch now has to sign some paperwork to get the ball rolling at the school. We are hoping to have things going by the end of this year.

We have an appointment set up with the OT for therapy starting in April (they will have an office closer to us at that time).

I guess I would like the diagnosis to know what we are dealing with. I would like to have all my ducks in a row. It's one thing for them to say, "Sure, he has sensory issues" but not state that he actually has a possible disorder.
Like right now he is diagnosed with ADHD with some anxiety "issues". Yet, another doctor tells me "issues" doesn't cut it with other professionals or insurance.
973741 tn?1342342773
COMMUNITY LEADER
Yes, they do look for the full title "sensory integration disorder or processing disorder".  That is what both our OT and pediatrician placed on my son's paper work for a diagnosis.  

It does sound like things are moving in the right direction even if it is hard.  I will tell you too that I'm honest with the professionals that I've worked with in terms of what needs to be done.  I needed information for my son's 504 plan which included that sensory looks like adhd in X, Y and Z way.  I sent an email to my OT asking for her to incorporate that in her letter to the school.  I called my pediatrician and talked to her and told her I needed a letter stating that my son was diagnosed with sensory processing disorder which she complied with exactly and added other things.  I'm a squeaky wheel and I'll make it easy on people by telling the exactly what needs to happen for the things that need to be done to get done.

Does that make sense?  I would tell the OT and psych that you are hoping to get him some simple accommodations at school and a diagnosis is part of that.  Who's going to diagnose him and let's get it done.  If you didn't get a true diagnosis from your OT and they just said 'sensory issues' ---  I would have them explain to you why it isn't a disorder and is just an 'issue'.  Perhaps it is the degree to which it challenges him???  But I would back up how you see things hindering his life and why you think therapy is essential and that the diagnosis is the first step to that.  

But let me just say that my son went through school until 4th grade without any accommodations or school plan/iep.  He still does not qualify for an IEP because he does alright academically.  Therefore, my school does not test either in that case.  However, a 504 plan is such that some things that would help him do 'better' can be put into his file and follow him throughout his career.  That is what I'm working on now.

So, my point is----  even if you begin OT and work on his issues in private OT therapy----  he'll show improvement that will carry over to school in general with or without them on board.  
5757880 tn?1395578022
Thank you for all the information! I do appreciate it.

As of recently, the school hasn't even wanted to do a 504 plan for him. They look at his report cards and say academically he is fine, which is not true. They finally gave me the paperwork regarding his reading tests and such and he is still at a 1st grade beginning of the year level. I think they are finally realizing something isn't right so, hopefully :)

I will be contacting the OT again this week - we have scheduled his first session next week.

Thank you again!!!
973741 tn?1342342773
COMMUNITY LEADER
Good luck, let me know how it goes.

My son was the same, by the way, and still is.  He has straight A's and his standardized tests has him in the top 3 percent of our state in math and reading.  He's smart.  There is no question.  BUT, the reason why the teachers and principal are trying to get a plan in place is to help him be comfortable in the classroom in order to do his best work.  If a teacher makes him sit in a regular seat all day, he will not do as well.  SO, they want things written so that no teacher can ever question that he needs an alternate seating plan such as being able to stand if he wants, he can sit on a ball, he can sit on a T chair, he can have a band or Velcro on the bottom of the legs of his chair that his feet can push against.   Those types of accommodations make school a comfortable place for my son to do his work although so far, his test scores are not such to show that his sensory has impacted him academically.  

You need to find someone too in the school that can help be your advocate as well.  

Here is a tip, if you have the time----  get really involved in school.  Volunteer often and get to know the teachers and staff.  This has really helped me because I have a good relationship.  I am forthright that I know teachers have a hard job and my son can be more challenging than others.  I share with them all of my son's difficulties up front and let them know how we work on them from our end.  It just all really  helps.

I also have given thank you gift cards to my son's teacher.  Just a 5 dollar starbucks card with thank you note.  Thank you for taking such good care of my son.  I do it at weird, random times.  I always send one on the second day of school as a thank you for making the first day a good one for my son.  Costs me 5 bucks but lets them know that I appreciate them.  

Anyway, just an idea.  

Let me know how your OT appt. goes and what they say!
973741 tn?1342342773
COMMUNITY LEADER
How did OT go last week and what did the OT say??
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