Sensory Intergration Dysfunction

Discussion in 'Early Childhood Archives' started by gracie, Apr 26, 2004.

  1. gracie

    gracie New Member

    I am new to the board....and am wondering if there is anyone out that with a child diagnosed with S.I.D. (sensory integration dysfuntion)?

    Been battling dr. to test my son for this. It is something that runs in family's and can be passed on. And I have a nephew that has been tested and diagnosed with it.
  2. Wildflower

    Wildflower Active Member

    Hello Gracie and welcome! Yes, we've certainly heard of Sensory Integration Disorder (SID)! You've come to the right place.

    If you haven't already, I'd recommend that you read The Out-of-Sync Child by Carol Stock Kranowitz. She does an amazing job of describing this disorder. I highly recommend it.

    I'm in the UK and am about to put my little ones to bed (8 pm here), so I have to jump; but rest assured that others will be along shortly to welcome you and provide some insights on what life is like raising their Sensory Integration Disorder (SID) children. I'll check on you in the morning!

    Again, welcome! :D
  3. SRL

    SRL Active Member

    Hi Gracie,

    I'll jump in here since Wildflower had kiddos to take care of. Yes, there are a number of us here with children who have Sensory Integration Disorder (SID). My son showed signs of it for several years but he compensated so well and we were flexible about it that the doctor didn't think he needed to be assessed. Big Mistake as the time came when it all caught up with him and he went into sensory overload, in particular over odors. If you suspect your child has Sensory Integration Disorder (SID) it is important to get an assessment done by an Occupational Therapist (OT) who has experience in dealing with pediatric sensory issues. This shouldn't be a problem for your pediatrician since all he has to do is write a prescription script for Occupational Therapist (OT) evaluation and therapy.

    I did have to pay out of pocket for his evaluation but then we changed insurance companies and they have picked up most of the cost of private therapy.

    Have you been seeing what you believe to be definite signs of Sensory Integration Disorder (SID)? Do you feel it is contributing to behavioral problems or other difficulties?
  4. gracie

    gracie New Member

    Yes I have read that book....which leads me to believe that I am on the right track. That book describes my son so well. When I started reading it, I got a note book and started taking notes.....I am going to be prepared for this dr. on what I want and what I see on a daily basis. Any other imput would be wonderfully taken.
  5. Sheila

    Sheila Moderator

    Hi Gracie

    I'm well acquainted with Sensory Integration Disorder (SID). lol

    Glad you've read the Out-of-Syc Child -- it's a good resource.

    Sensory Integration Disorder (SID) is evaluated and diagnosed by a pediatric occupational therapist. Unless things have changed in the last couple of years, it's my understanding that SIPT testing is the most comprehensive Sensory Integration Disorder (SID) test.

    Welcome :D
  6. SRL

    SRL Active Member

    Is this your child's pediatrician who is balking? Often if children are showing signs of ADHD and Sensory Integration Disorder (SID) we recommend a multidisciplinary evaluation with a developmental pediatrician to evaluate for any underlying causes. Are these issues causing problems at home and/or school and if so, what are you seeing?
  7. gracie

    gracie New Member

    Yes the his dr. is balking me. I have addressed issues with this man for 2 years now....his main answer is medications, medications, medications. medications are not a problem if that helps. There are days you couldn't tell that I even gave my son medications. And we have tried 4 different levels of aderrall, and two other brands.

    Just a little on Dalton....he doesn't sleep. He is up during the night, on average he is up and about the house 3-4 times. Can't sleep in his bed, so it is the floor, the couch, sisters room, my room, kitchen floor.

    He has a very high pain tollerance. He can be standing there bleeding from a fall, and doesn't phase him one bit. He will walk up and say "mom I am bleeding, I need a band-aid."

    He is not retaining things he is learning in school. Today he can tell you his address, and tomarrow he can honestly not remember it. I have played games with him...thinking he was just not wanting to remember. He has a wonderful teacher. She is trying to help me get testing done through school system.

    At age 4 he was sent for evaluation....that is when they said he had ADHD. Wasn't comfortable with that evaluation, so I ask for second opinion. Second dr. says "he may have ADHD but I think he has other issues too" So she sent us to a sleep dr. He tells us "unless your son is harming himself or someone else, we won't test him". URRGGGHHH

    So now the dr.'s answer is to refer him to a Neurologist. We have an appointment, in June.
  8. SRL

    SRL Active Member

    The school evaluation is a good idea. You can make that request yourself by sending a certified letter. If things haven't moved along fast enough then that is a good route to go. If the school does an evaluation they can do Occupational Therapist (OT) but I wouldn't recommend relying on that. From what you are describing he really needs private therapy.

    Ask the neurologist for a referral.
  9. OTE

    OTE Guest

    welcome. Don't forget to do a parent report listing all the things you notice that seem to be symptoms of someething or other.
  10. blb

    blb New Member

    You may want to look at

    ADHD kids usually sleep at night, provided their stimulant medications aren't given to them within a reasonable hour at bedtime.

    Executive function/processing disorders sometimes shake out as what you describe, and are very prevalent with BiPolar (BP) kids.
  11. Sheila

    Sheila Moderator

    Be sure and send it certified mail.
  12. Wildflower

    Wildflower Active Member

    Good morning Gracie.

    It sounds like you have gotten the process rolling, which is a huge step to take. I'm glad to hear that you've read The Out-of-Sync Child. Over here in the UK, Sensory Integration Disorder (SID) kids are usually referred to as "highly sensitive".

    OTE made mention of doing a Parent Report. This is a very valuable tool that you put together to give to the various consultants you will be coming into contact with. I'd suggest saving it on your computer and making regular updates to it. It helps also, to keep the record straight.

    I am concerned that the doctor doesn't seem to be very responsive to you. A Parent Report is helpful in this area as well, as it sends a very clear signal of your seriousness because you've taken the time and care to document your difficult children issues. I haven't heard of a doctor yet, who scoffed at receiving one. They are usually very appreciative.

    If you live nearby a university, you may want to see if they have a teaching hospital. A children's hospital is the best bet, though. If you are nearby to Columbus, the children's hospital there may be able to provide you with a thorough evaluation:
    Columbus Children's Hospital

    Thanks for providing more details on your difficult child - the more info we have, the better we can help you and your family.
  13. gracie

    gracie New Member

    Good morning....I want to thank you all for the things you have given me to work with so far.

    My first question.....above someone said for me to fill out a parent report? Where do I do this at?

    My son take his adderall @ 7am everyday, because we are up no later than that time of day, even on days off from school.

    The school systems put my son on an IEP for speech, he has done this all school year, 2 days a week. Then in Feb. they did some testing through Occupational Therapist (OT) @ school. He gets that 1 day a week also.
  14. SRL

    SRL Active Member

    Here's a link to the parent report:

    It's something the parents here have found very helpful in communicating their child's issue to the doctors.

    Is the school's Occupational Therapist (OT) focusing in on motor skills? They usually won't do therapy for SI in schools unless it is severely impacting the child in the educational setting.

    The more that you're sharing about your child the more I would urge you to push for a multidisciplary evaluation. Personally if I had strong feelings that my child had Sensory Integration Disorder (SID) and my pediatrician refused to make a referral, I would be hunting for another pediatrician. Mine has always taken my concerns very seriously and trusts my judgement.

    In addition to the Bipolar link that was already mentioned, another site for you to dig around through is this Pervasive Developmental Disorder (PDD) site. There is an online screening tool which can yield some information. Children with Pervasive Developmental Disorder (PDD) have speech and language issues and Sensory Integration Disorder (SID) and ADHD often runs comorbid. Many of them have auditory processing problems which can make it difficult for them to do things like remember information coming in verbally and organize the material. It's worth at least looking at given what you've shared so far, especially since it's often missed early on unless symptoms are fairly severe.
  15. gracie

    gracie New Member

    Dalton's on his way out the door. The last visit really did me in, so I am in the process of finding one right now. I want one that is going to listen to my concerns and address things right away instead of pushing off to the side.

    The Occupational Therapist (OT) he is getting in school is for his fine motor skills. He has been writing his name for two years. And it has not improved. I know what it is, because that is how he writes, but someone else who looks at it, would think he was just starting to write his name.
  16. Sheila

    Sheila Moderator

    In the Special Education Archives, you'll find a variety of "sample" letters to use as a guide when requesting information or evaluations/re-evaluations from the school district. Again, be sure and send the letter certified mail; it kicks in mandated timelines.

    School services are great, but beware. Most sd's only provide things like Occupational Therapist (OT) in areas that they consider related to school (fine motor skills = better handwriting). Fine and gross motor skill delays are much more complicated than that. I stongly suggest that you seek independent opinion(s) on things of this nature. (As indicated above, an private multidisciplinary evaluation can be extraordinarily helpful.)

    Fine and gross motor skill development are the foundations upon which all other learning is built. If I had it to do over, I would have started difficult child off with-a highly skilled Occupational Therapist (OT).

    This thread has some information in it that may be helpful for you.
  17. gracie

    gracie New Member

    Well I rec'd a letter from the school. They want to run more tests on my son. They say he is not retaining what he has learned in school.

    Spoke with his teacher Friday night. Teacher tells me that the school psycologist cancelled 3 appointments with my son last week. He attends school MON-WED-FRI each week) Then the teacher proceeds to tell me the school psycologist has a 88% absentee rate this school year. WHAT ON EARTH, how can this woman still have a job.

    Wondering what to do next. She was to get this testing done, with results back before we see a specialist in June. There is only 7 school days left for this to be done.

    Anyone have suggestions for me? I haven't done anything yet, want to do something.....something is wrong with this whole situation. I feel as if the school district is failing my son.
  18. SRL

    SRL Active Member

    I would call the school psychologist directly instead of having the teacher be the go between. If it sounds like she can't get the testing done prior to the end of school as promised (and that's likely if they are going to do ability/achievement type tests) then I would call the director of special education at the district. Many school staff members such as psychologists work some days after the end of the school year and the testing may be able to be completed then.

    If the school psychologist is not going to follow through you probably are going to have to push the issue. Did the school suggest the additional testing or did you do that?
  19. OTE

    OTE Guest

    There's no reason it has to be done on the days that he's in school. Call and tell them you'll re-schedule and bring him in any day.

    These people usually work all summer as well.
  20. gracie

    gracie New Member

    The testing was discussed at our meeting in Feb. So it was a mutual agreement that they thought it should be done, and I said that it may shed light on the subject.

    The school psycologist is not at our school everyday of the week. Seems as if everytime I try to contact her, she is at our other school or not anywhere to be found. :rolleyes:

    And yes I would be willing to take him to school on a day that he isn't in class. Anything to help this little guy. :wink: