OMG it's been Sensory Integration Disorder (SID) all along!

Discussion in 'General Parenting' started by Indianamomof4, Oct 23, 2007.

  1. Indianamomof4

    Indianamomof4 New Member

    Oh my gosh, how many parents go through this? How many parents think their child is ADD or ADHD, treat it, have NOTHING work, only to find out that they have been treating the wrong darn thing? I'm feeling frustrated but hopeful.

    No wonder nothing for ADHD worked for difficult child. I spoke to the O/T on Friday and it is all clear. He said so often people mistake Sensory Integration Disorder (SID)/sensory processing disorder (SPD) (same thing) for ADHD because kids who have it do not know what to do when they are hyperstimulated, so they act out and can't focus, especially kids with the Proprioceptive dysfunction (inattentive/hyper/physical). It is all so clear now. I went to this website: and took the checklist... it is so abundantly clear that devin is hyposensitive in the vestibular area, dysfunctional in the propprioceptive area (in all three ways) and possibly orally dysfunctional.

    Here's the problem I face. His school is open-classroom multiage. So, he can see/hear 74 other children and 4 other teachers while he's supposed to be learning. And they wonder why he's not successful. He tells me every day, "Mom, I'm trying so hard, it's just so hard to focus." I feel so bad.

    What are my options? I don't know. Send him to another school in the district whose classrooms aren't open like this? How, when we don't have school of choice here. And, my house is for sale and I'm planning to move them to where we came from (by family and their dad) when it does sell (but it's a high end house and the market :censored2:), so I don't want him to transfer to another school here only to have to transfer to another one again. That's asking for difficulty right there. Oh, I just feel so lost. :frown:
  2. susiestar

    susiestar Roll With It

    What therapy has the Occupational Therapist (OT) recommended? We had most forms of disfunction in my little guy. VERY much was helped by regular brushing. Ask the Occupational Therapist (OT) if this is appropriate, then take the prescription to school and ask them to brush him regularly, or at least when he has problems. My guy can now sit through church, go to the grocery, and do SOOOOO very many other things that otherwise would not be doable.

    Glad you found it.

    Try reading The Out Of Sync Child and The Out of sync child has fun by kranowitz. Might spell the author slightly wrong. Very excellent books.

  3. Indianamomof4

    Indianamomof4 New Member

    I have ordered the books. I can't wait to start therapy tomorrow!!! He did not give me the specific therapies yet, we find that out tomorrow.

    I can tell you I had a moment this morning, when he realized he HAD to wear pants and not shorts. I knew it was going to happen as he is convinced NONE of his pants fit him "right". He was throwing things, screaming, crying. I was so frustrated and the bus was 10 minutes from arriving. I was laying in the foyer crying and I sat on the floor, grabbed him, and instead of freaking out on him to get a grip, I just held him. He fought me at first, but then I said, "It's ok. Calm down. It's ok." I immediately felt his body go less tense in my arms. I said, "Feel your heart beating so fast." He did. I said, "You have yourself all worked up about your pants, and by the time you get to school I promise you will have forgotten that they weren't just right". He said, "But they go past my feet on my shoes, and I hate that." I said, "But your shoes will feel it, honey, not you. You won't feel it." He sat there for another minute and calmly said, "Can I have a cookie?". LOL

    I realize that my freaking out on him, putting pressure on to get ready were just overstimulating him and making it worse. By the way, mine is in 2nd grade too. :smile:
  4. totoro

    totoro Mom? What's a GFG?

    I would also read

    Sensational Kids, Hope and Help for Children with Sensory Processing Disorder.
    By: Lucy Jane Miller, Ph.D.,OTR

    She is the director of Sensory Therapies and Research (STAR) Center in Denver, CO.

    It is the top sensory center and cutting edge, she works a lot with Carol Kranowitz as well...

    Good sites:

    These are just a few... I have more if you want to PM ME!!!LOL

    Don't completely give up on the diagnosis's, I would work on his most severe symptoms if they are sensory, work on those... See what you have left after you have helped him with that.

    A quiet small dark space has done wonders for N, not so much for K. N loves tight small spaces... both love to be squeezed... they the sock tunnels, being sandwhiched in between 2 huge bean bags... they love swinging, reallt helps calm them.... massage, more so K than N.

    Every kid is different for example N can tolerate being brushed at times we have to initiate it very softly and on her command, she can not take joint compression either. But K loves both and tolerates both really well...

    If you have a good Occupational Therapist (OT) they can really help you with a great at home game plan.

    We use the "how does your engine run" technique the girls can tell me how they feel really easily now... "My engine is too high, or too low"... that is the Alert program website...

    good luck... and Susie is right do not try the brushing until you are taught the proper technique, you can cause someone to become very sick or upset by improper technique or the wrong placement... also for the joint compression.
  5. busywend

    busywend Well-Known Member

    Could he go live with dad until you get moved there?
    I know it is not the traditional way, but if it helps him keep school as a positive - it is well worth it.
  6. SRL

    SRL Active Member

    sigh...this is why we stress over and over again to those with younger children to get the most thorough evaluation right up front that you can. It's natural that it goes against our better judgement (time, money, hassle, privacy) to dive right in and get the works right away but I am certain it would be a huge savings in the long run given all that goes wrong with missed and partial diagnoses.

    One of the biggest helps to us on the homefront has been a mini gym in the basement. The most used piece is a swing attached to a rotating swivel we got from an Occupational Therapist (OT) supply place. That thing has paid for itself over and over again in terms of transfering therapy to the home and helping regulate difficult child. The other kids like it too. :)

    Isn't there any quiet place in that whole big classroom setting? I would think they would have cubicles set up for kids who wanted or needed quiet places to work. I was in a multiage class way back in the dinosaurs. It was multiage by default, not by design, and it was difficult even for me as a good student without extraordinary distraction problems.
  7. Indianamomof4

    Indianamomof4 New Member

    I will definitely look into Occupational Therapist (OT) stuff. We had his parent teacher conference this afternoon. It wasn't good :frown: They seemed mad we took him off medications. She said, "he just doesn't seem to care and loves to cause a ruckus". I know difficult child can get other kids going, and I'm not saying it's all the Sensory Integration Disorder (SID)'s fault. He is a defiant and difficult boy at times, and the teacher made it clear that she is not buying the Sensory Integration Disorder (SID) as related to him not doing his work, or distracting the other kids.

    I'm not saying that it's not just defiance, either. He does have to work it out. We have to keep communication open between the teachers and me. I think they have a few cubicle desks, but there really isn't a quiet place to be found except the library. :frown:
  8. Hanging-On

    Hanging-On New Member

    I feel for you. It seems like you're going through what I went through. It took a lawsuit against the SD to finally get a Neuro-psychiatric/Ed Diagnostician. difficult child has been tested by Occupational Therapist (OT), SPL, SW, Clinical Psychiatrist, Clinical Psychologist, School Psychologist, Neurologist, MRI test, CTscan, blood tests, MD's, Learning Disability specialist, a host of in-patient hospital doctors, and finally the Neuro-psychiatric/Ed Diagnostician. Poor thing has been through the every hoop they can think of. If you look at my signature info you'll see all the different diagnosis's I got for difficult child and all the medications they tried. It's insane. What seems to be working (Finally) for my difficult child is a very small Sp.Ed classroom of only 4 students, 1 teacher, and 3 assistants. difficult child is now showing excitement about learning, and an eagerness to learn. Something I never thought was possible. He still has behavior events in school. So far it's about 1 day a week. That's a huge improvement over the rages every few minutes, every day. I hope things get better for you. BIG HUGS.
  9. tiredmommy

    tiredmommy Well-Known Member

    Duckie's teacher wears a microphone and wireless transmitter which goes directly to a student's wireless headset. I *think* the child has auditory processing problems. Could something like this help your son stay focused on the teacher?
  10. Big Bad Kitty

    Big Bad Kitty lolcat

    How awesome is that! When my difficult child starts fussing, I get so frustrated, sometimes I can't gather my wits enough to stay calm like that. Way To Go, mom!
  11. Indianamomof4

    Indianamomof4 New Member

    Great ideas.... someone else suggested him wearing ear plugs or head phones to stay focused. Love the ideas. I think his teachers are maybe trying too negative of consequences on him as well. They're going to use the 3 strikes you're out thing. He has 2 warnings until he gets sent to the office.

    But, my best friend said, what if they use a reward instead of a punishment? So, maybe he earns as much as 5 points in a day and if he keeps 4, he gets a reward at the end of the day (from me or from them, or both). I'm going to suggest this instead of their more negative form of reinforcement.

    I'm telling you what, Big Bad Kitty, it took EVERYTHING I had to do that to him this morning. Really. The moment I hear him start about the clothes in the morning (it takes him 40 minutes to get dressed, and I'm not kidding), I tense up and want to just hide in the pantry. But, I told myself, just stop, just stop and do this for him. And I did. And it worked. And darn it if I won't do it again.
  12. TerryJ2

    TerryJ2 Well-Known Member

    Glad you held it together! Way To Go. That is not easy.
    So sorry, but so glad, you're getting the SIDS issues worked out. Wow, that is one, huge classroom, for anyone!
  13. Sara PA

    Sara PA New Member

    He should have an IEP and with that IEP you can request a change of placement to a school with an environment that accomodates his exceptionality. That would be a regular school with regular classrooms.
  14. Sunshine1966

    Sunshine1966 New Member

    I can't imagine what you must be feeling after thinking it was ADHD and trying everything. I have had numerous people mention sensory processing disorders to me and I wonder myself. Who was it that figured it out, the Occupational Therapist (OT) person? What kind of symptoms did your son experience that made them think it was ADHD? We are on our second medication trial for ADHD and so far its just mostly making him tired and zombie like at times. I'm not convinced anything is working.

    I wish you success and hope that things go better for you now that you think the diagnosis is correct and you know what you're really dealing with.

  15. Marguerite

    Marguerite Active Member

    Punishments only make the child more fearful which makes it all a lot worse. Rewards work much better but won't work if the child has little/no control over it. In difficult child 3's case, I had a hard job convincing the school to not punish what he couldn't control, but to adapt themselves rather than force him. With time and patience, and a brain slowly maturing, he has learnt some control but some things just can't be changed until the child is ready.

    The headphones are a good idea - another variation on this is for the child to listen to music or some other sounds (such as nature sounds, white noise or classical music) to drown out the classroom sounds. You do t his when the teacher has assigned book work and if she needs to speak to the class and difficult child needs to hear also, she can get his attention by some agreed signal (touching his shoulder, for example).

    Indianmom, please be aware you still only have part of the answer - Sensory Integration Disorder (SID) is not generally a stand-alone issue. It CAN be, but it's often found alongside (as a symptom of) other disorders. But for you, it IS a start to get some more appropriate management in place.

    It's really difficult because the child can't tell you how he is different - what is "different"? As difficult child 1 often says, "I thought EVERYBODY was like this!" We were watching a TV program on visual memory and the way some people hear or see certain things when they visualise numbers. I was watching this and saying, "So? Doesn't everybody?" Because I always have done this too. I think for me it's a facet of what was in my environment at the time I was learning about numbers, because I can recognise certain images from my childhood - the garden gate (which stands at No 10), the turn in the road (which I was not permitted to go beyond until about the time I grasped the number 20, which is where it stands in my mind when I visualise '20'). And I thought this was normal - of course, other people would have a different visual sequence when they perceived numbers, but the degree of detail - normal, surely? Nope. As my kids said, "Mum, you're a freak."
    "In a household of freaks," I reminded them.

    We are the combined product of not only our environments but also the way our brain is wired. brain wiring does change and adapt as we develop but if what we start with is too different, we need to adapt a great deal and find our own way of learning, before we can really properly use this wonderful machine we call a brain.

  16. Indianamomof4

    Indianamomof4 New Member

    Hmm... do I have to request an IEP? I don't know where to go with that.

    The reason why the doctor suspected it is a combination of his sensory issues with clothes, shoes, socks, his inability to remain controlled and behave appropriately when he's in pain or sick, and his constant need to make noise and have movement.

    It all made sense when you looked at it all together, not just the inability to focus and hyperactivity alone, but combined with everything else.

    We might be dealing with something else, but at least we're starting somewhere. His appointment. today was wonderful. His O/T is amazing and we saw an immediate response in him when he began the listening therapy. It took him from bouncing from one place to another in their "gym" and swinging like a crazed monkey on their swing to kneeling down on the swing, completely quiet, just moving back and forth for 15 straight minutes! I was in awe.

    I'm so happy that my insurance pays for 60 visits a year and might even cover home equipment. OMG. I feel so blessed. Thanks for the well wishes.
  17. Sara PA

    Sara PA New Member

    Apparently you will have to request an evaluation for one unless you can convince the school district to make the transfer without it. If the only accomodation you are looking for at this time is a smaller, quieter classroom environment, they might do it. Might. You should post over on the Special Education board and ask how to go about it. It is done officially by sending a certified letter to the school district.
  18. ShakespeareMamaX

    ShakespeareMamaX New Member

    Wow....that sounds a lot like my son. I'm going to check that site out.

    Thank you for posting this. Keep updates on here and maybe I can learn some pointers if you come out with anything that works!

    Good luck from the bottom of my heart! <3 :flower: