Mayo Clinic Connect
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.
Liked by Daren, V
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.
Hello, I have a five year old son, he recently stated school and a few days later his teacher called me in to ask if he was autistic, I told her no but we did take him to our pediatrician who said he was fine but if we had further concerns he would refer us to a child behavioral specialist, we haven’t been to see anyone yet, but after his teacher talked me I started thinking back, his behavior to me was normal, I just thought maybe he was a difficult child and he’ll grow out of it, he hums, he’s always done it, and when I looked it up yesterday I found out about SPD, I’d never heard of it before, I read the article and found a lot of similar behaviors in my son, he hates brushing his teeth, it’s a challenge everyday, he doesn’t like sharing, he wants the TV to himself, toys to himself, he throws tantrums when he doesn’t get what he wants, he will ask for something and want it immediately, he’ll ask the same question over and over even after he’s been answered, he doesn’t focus if I’m giving him lessons I’ll have to keep drawing his attention to what he’s doing, he’s a picky eater but if he’s eating something he likes he’ll eat a lot. I would appreciate any insight you can give me.
Welcome to Connect, Pamela.
I’m tagging @concernedmtnmom on this discussion. She is an amazing resource. Also, I’m tagging @melissa333 who lives with Sensory Processing Disorder (SPD). I hope they will offer some thoughts according to their experience.
Pamela, did you see the books that Concernedmtnmom posted in this discussion? “The Out of Sync Child” and “Raising Your Spirited Child” Perhaps they can help prepare you for an appointment with a specialist.
Thank you for your help, I’ll also check out the books, we don’t have a lot of resources for these types of diagnosis here in the Caribbean so I’m grateful for anything I can find out.
Hi, I am glad to share what I know about SPD. First, it is hard to diagnose if you don’t have doctors familiar with it, but doing research online can help a lot. The books I mentioned, The Out of Sync Child and Raising Your Spirited Child are very helpful, but the Mayo site and other medical websites are great. Sensory Processing Disorder (it used to be called Sensory Integration Disorder) includes a wide range of symptoms. You can read what I wrote in the string below. But the key is to be an advocate for your child, get an occupationa therapist to help you, and just take it one day at a time. Pick your battles. Tactile defensiveness (can’t stand tags in clothes, seams on socks, itchy or confining clothes, weird food textures, toothbrushing, hairbrushing, etc.) can be very challenging. My daughter wore nothing but velour stretchy pants and shirts for a couple years. I spent too much time worrying about what she was wearing, what other people thought, etc. She also had (has?) oppositional defiant disorder. Wouldn’t take no for an answer, very stubborn, explosive temper…fun times. I think it’s common to have the two problems at the same time. Pace yourself. If they get some OT they will outgrow it. There are SPD catalogs that sell seamless socks, weighted vests, balancing toys, and “fidget” toys to distract their sensory issues, etc. that will be very helpful, especially since you’re in the Caribbean.
One thing that helped was learning how to give her time to transition from one activity to the next, and giving her time to work toward a comfort level with different sensations. The Spirited Child book helped with that. Don’t give up on your kid and don’t think you have to “fix” him right away. Just know there are good days and bad days and it’s all a process. You are doing the right thing for your child by starting this process and researching how to help him. Yay you!
Liked by Colleen Young, Connect Director
Thanks for the suggestions and advice, we haven’t had him diagnosed with anything yet, he is scheduled for adenoidectomy next week so at some point during his recovery process while he’s home from school I hope to get him in to see a specialist.
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.
Liked by Daren
That’s great that you were able to detect the SPD early on. Occupational therapists will help as your daughter ages. You are on the right road to helping your daughter have the most fulfilling life she can. Good work.
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?
I do. I have a daughter with SPD. She is very sweet. Her pressure vest and skin brush are really helpful. She loves to draw and is doing well. I’m glad we found it early and could help her manage it.
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! 🙂
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