I have adopted a boy who was diagnosed with Sensory Processing Disorder about 1 1/2 years ago. Just looking to connect with other parents of SPD kids.
I commend your selflessness! I have parented approximately 40 such children, manyof whom had an array of various other issues from lack of varied degrees of basic care from birth on. I would gladly offer you any advice I know to be useful from personal experience as well as those I thoroughly researched and decided made logical sense. Wishing Your Family the very best.
My 1 year old daughter was diagnosed with a tactile and vestibular SPD. We still have a long road, but it is amazing how far she has come. She was finally diagnosed at 9 months, at at that point she couldn't sit up, roll over, bear weight on her legs, screamed during diaper changes, bath, and being touched or grabbed on arms or legs. The brushing and spinning have made immediate changes to her. Highly recommend seeing an OT that specializes in Sensory for support and treatment if you haven't already.
First, there is hope! I have a daughter diagnosed with this (called "Sensory Integration Dysfunction") when she was 5. It was a very tough life till we got her diagnosed. We couldn't even put on socks without a major meltdown. It took forever to find the help we need, but finally the OT dept. at the children's hospital gave us the right tests (they were the most knowlegeable and didn't look at us like parents who just can't "control" their kid). The tests were a long survey (maybe more than one, can't remember) for parents to fill out and then some odd tests where they spun my daugher on a disk, then looked to see if she got dizzy or how her eyes moved. My daughter could not get dizzy....she loved it. all the treatment for her symptoms (tactile defensiveness and proprioceptive dysfunction) were OT therapies that were easy to do in the clinic and at home. Brushing her arms and legs with a soft baby brush, sitting on a big gym ball instead of a chair, chewy toys and fidget toys (things taht bend and click and stretch) to keep in her desk at school, rubbing her back left to right, and other simple simple things. learning to eat different textures were a challenge but we made it! At 11 we put her on Zoloft to help the anxiety and now I would say she has no residual effects, is confident, comfortable and happy! At 13 she even could tolerate wearing jeans! Two books to help you: The Out of Sync Child and Raising Your Spirited Child. It's such a relief and you get so much hope from OT therapists, so dont despair, get an appt!!! The range of symptoms include tactile and auditory sensitivities or "thrill seeker" need for speed, contact, even harsh contact (bouncing off walls). I put it this way: kids are either oversensitive to stimuli or can't feel anything unless it's super intense. Any kid can have symptoms from either end of the spectrum, so find a knowlegeable caregiver who has seen it all.
Hi... I was just wondering what ended up happening with your adopted boy... My 2 year old daughter has been getting PT and OT for over a year now and we just now are discovering that she has some major sensory issues. She cannot touch or even look at cotton balls without gagging... Amongst many other unusual things. Her largest problem is that she still isn't eating solid foods. She has progressed to putting small amounts of food in her mouth, chewing a bit, then spitting out most of the food instead of swallowing. The OT and I are frustrated that we aren't making much progress. Her endoscopy showed no strictures, MRI was normal... I am wanting to bring her to Mayo Clinic but I don't know if anything can even be done for her??? Is anyone else out there dealing with the sensory stuff? If it weren't for the therapists she has already I would have never know about SPD... None of her doctors acknowledge it!
I am glad to have found this community of caregivers that are looking for support as we help our children. I'm excited and hope we can make this most of this community we are forming. Thanks for your posts and I wish each of you the best of luck as we search for support and help as we care for our children.
Hi Daren and welcome to the Connect community.
I'm grateful that you have re-animated this thread. Do you have a child with SPD?
Thank you for telling us about your daughter. Perhaps you could share some more about how you got to where you are today. How old was she when she was diagnosed? How did you get a diagnosis? How old is she now?
I'm glad you've found simple tools like the skin brush and pressure vest to help her. I look forward to learning more about her and your family.
I forgot that I had joined this group way back in 2012... So much time has passed, and yet we still don't have a lot of answers about our daughter with SPD. She is almost 6 now, started kindergarten this fall. We are now struggling with the school district and her IEP. She had been getting services under the category of "developmental delays", but now that she will be turning 6, they say she cannot be in this category anymore. The say that they have to "label" her as being in the Autism Spectrum (since SPD doesn't "exist") to continue getting speech, OT, resource help... We have had this discussion many times before, but ultimately, everyone who gets to spend more than 30 minutes with her agrees that she is not on the "spectrum". We got a referral finally from the Neurologist to have her evaluated by a Developmental Pediatrician... But of course, it is more than a six month wait to see him as he is the only one in Nevada.
Has anyone else out there had the same issues with IEPs? I am so frustrated with SPD not being recognized by the schools and doctors. In the meantime, my daughter is still not eating, having anxiety issues at school brought on by her sensory issues, and has lost weight since starting school. She will not eat more than a couple goldfish crackers at lunch, and comes home starving! The school district will not address the eating issue as it "doesn't affect" her schoolwork. HA! How can a child focus and learn when they are hungry???
After a year of searching, I finally found an OT that does feeding therapy, so we are just getting into that...
Any suggestions out there on how to get the school district to listen? Thanks! 🙂
I should take a minute to introduce myself. I'm the new Community Director of Connect. We're re-igniting this community and you will start to see improvements to the site over the next few weeks, starting next week, making it even easier to connect and share wisdom like you have here!
Mayo Clinic Connect
Thanks for the feedback. It is great to hear that this can be "outgrown" in a sense... After a lot of therapy and support. My only issue with doing away with the IEP is that I have seen that she really needs someone there keepjng her on task during work time in the classroom. She gets bored/distracted/anxious about doing the work wrong, and sort of shuts down. She is intelligent, and when asked to do the same tasks at home, she can do them. At school, I can see on her work exactly at what point she "shut down". Everything is neat, correct, and detailed... Then it turns to scribbles and random letters.
So... I think she can benefit from having the extra help, and worry that she will fall in the cracks if no one is monitoring her. We are now working with the OT weekly on feeding mostly, so I am hopeful this will help a bit over time.
Thanks again for your advice... I am sure I will keep you all updated as things progress. 🙂
Does Mayo Clinic recognize SPD as a stand alone diagnosis outside of being associated with ASD?
Welcome to Connect @OneTiredMomma
According to this information on MayoClinic.org, SPD is associated with ASD. http://www.mayoclinic.org/diseases-conditions/autism-spectrum-disorder/basics/definition/con-20021148
Does your child have SPD? What challenges have you had by it not being recognized as a stand alone diagnosis?
We are finally being heard. Kind of. Demanded a referral last week and ended up with an appointment with Dr Kotegal. He assured us this isn't normal. Finally!! We couldn't have handled another "Wait it out" approach. Family Med has gone out of their way to ignore our concerns and make us feel crazy. Our daughter will be 2 next week. She came into this world wild and screaming and hasn't stopped. Thrill seeker, sleeps 5-7 broken and restless hours in a 24 hour period, jumps constantly, always in motion, struggles with physical contact, colic that lasted past a year, terrible eater, always frustrated, becoming aggressive, starting to hit herself, tantrums that last for hours, can't self sooth...to name a few concerns. But she meets most of the baseline questions on the autism screening tool as yes or sometimes. Anyone who spends 5 minutes with her, including Dr. Kotegal, says she doesn't present as autistic. I agree. Mostly. I mean, something is definitely wrong.
He ordered some genetic testing (waiting for results), some general labs (iron came back low otherwise normal), sleep study mid January. After we finish this round we will make another short term plan.
I haven't even heard of that book. Thank you for the suggestion. I'll have to track it down!
I appreciate your comment. Especially since my husband and I spend most of our time feeling like complete failures.