ADHD? Maybe not. It could be Sensory Processing Disorder
October 7, 2009 Posted by Guest Writer
Guest Post by Cat Lichtenbelt
When dealing with a child’s behavior that is less than ideal in the Kindergarten world, there are a few ways to respond. I choked down the denial, and went head first into appointments, web searches, talking with parents, meetings with the Principal. I don’t regret a moment of it. Your best friends are those who guide you without lecturing you. I have one of those and I will always be thankful for her and what she gave me, a name and phone number!
Our son was the child who was unable to sit still at circle time. He was the one who got so focused on a project he would melt down when torn away from it. His social skills were way behind his peers at times and other times he was adored by his classmates. The opinions of the educators did not match our opinions of him. He was always fixated on details of mechanical workings, recited information as if he was reading a script, yet I said his name more times each day then I had hairs on my head! I say he thinks like an Engineer, with all the quirks and personality! He destroyed school property and built the Lincoln Memorial out of blocks from memory all in the same day. I cried out of confusion.
Smart? Yes, very smart. Bored? A little. His own world is where we found him most of the time. We worried even before the school meetings and the teacher’s phone calls. Our second son was easier; he was sweet and cuddly and the one I enjoyed taking to the store. So, was it our parenting? I went to the Love and Logic conference with friends. We did the suggestions and still use “uh-oh”. It was not enough!
One late night when I was at my wits end, I found “Pocket Parenting” on a web search; we turned a corner with that. It is a parenting guide for kids with ADHD and Autism. Based on what I read there, I could not commit to self diagnosing my child with either of those. In fact, I found more similarities in my son with Gifted and Talented traits. So for now, we called them “quirks”! Finally, he’d been professionally ruled out for ADHD and Aspersers Syndrome. The doctors said, “he is a smart kid”. Is that an official diagnosis?
It was a gift I got from a friend that made our world seem right and open the skies for him living to his potential. The gift was the name and number of a Pediatric Occupational Therapist (OT). He conducted an hour long evaluation of our son. We met the following week to discuss the results, and this is when I met a person who ‘gets’ these kids. The diagnosis was Sensory Processing Disorder (SPD). Our son was showing symptoms of a neurological system that was out of sync. He was seeking out ways to meet his stimulation needs for his vestibular system; your balance sense or where you are in space. He could do a perfect cartwheel, but would not pass the roadside sobriety test. When he was stressed, he needed a lot of physical stimulation, tight hugs, loud sounds, spinning. He was numb to normal sensation, and needed the same input to be more intense; the pat on the shoulder needed to be a squeeze on the shoulder. At the same time small details were bright and important to him which caused severe distractions.
We committed to a therapy schedule of once a week. Each session incorporated a cocktail of stimulation. The sessions were child led and OT guided. A typical session would include some spinning on a hanging board, chewing sour gum, listening to music, and reading flashcards all while wearing a tight shirt. Other days he was rolled in a mat or hung in a sling. Our son loved the sessions and left drunk from stimulation. This was a child who never got dizzy, now my child gets dizzy! The sessions also included some quieter stimulation and were consistent each time, bringing his stimulation threshold lower and lower. This is where I saw the changes appear slowly and progressively and I cheered inside when he could complete a task that was once too difficult.
We have installed therapy swings in our house so he has access to the motions when he needs them. We do the “infinity walk” before reading books. We’ve scheduled meals to prevent sugar dips. The payoff has been worth all of it. Our son is thriving in 1st grade thanks to a combination of parent knowledge, therapy, scheduling and an awesome teacher who has mastered compassion. And, our 2nd son is also benefiting from making it all a family routine. Thank you KW for our greatest gift!
Now, I’m helping to give the gift that was given to me, just on a bigger scale. The SPD Foundation is a great resource for parents and has an international campaign to bring awareness to SPD and its therapies. A wonderful film, “Autistic-Like: Graham’s Story” is being shown all over the country and abroad. Autistic-Like is a film that parents can relate to on a basic level of love of a child. The dad, Erik, searches for the right therapies for his son, and in the process, educates the audience about the terminology and theories of therapy, while not being overwhelming. I’m excited to expose parents, educators and other professionals to what SPD is. I’ve gotten to know more people today than I’ve known in the last 8 months because I am willing to talk about our experience. I give you this gift, I hope you embrace it and it gives you, and those around you, years of happiness as it has for us!
For more basic information and other resources on Sensory Processing Disorder click here.
The Little Red Hen says:
October 7th, 2009
Thank you very much for sharing your story with us. I’m sure you’ll help others with the information you’ve provided.
Maria G. says:
October 7th, 2009
Cat thank you for writing this. My daughter has SPD and we went through a similar struggle. It wasn’t until we found a doctor who actually recommended an OT to us that we understood what our little girl was going through. We’re doing much better now. Thanks to people like you who share your stories, maybe more parents will have a better chance of properly getting their child diagnosed earlier. This post is a Godsend to any parent out there wondering what to do with their “problem” child.
CanCan (Mom Most Traveled) says:
October 8th, 2009
I will have to check out the Infinity Walk. I have watched Graham’s Story and I do recommend it for all parents who don’t know why their child is different.
SPDMom says:
October 12th, 2009
Thank you for posting about this. My son has SPD and I met Erik this weekend at a screening of Autistic Like. We need to make everyone more aware of SPD and fight to get it recognized in the DSM so that our kids can get the help they need to succeed in life and no be labeled bad kids.
Chynna says:
October 15th, 2009
Thank you for this amazing post. I’m definitely going to pass your article along to everyone I know in the SPD community. More of us need to tell our stories so the information gets out there.
Only through understanding will we have respect for these children and their families. Thanks for being someone giving that vital information so other parents don’t feel as alone.
Warmly,
Chynna
http://www.lilywolfwords.ca
http://www.lilywolfwords.blogspot.com
Colleen says:
October 15th, 2009
Wonderful post!!! Sounds just like my daughter (7 SPD). I am going to link your post to my blog. I am dedicating my blog to SPD Awareness Month : ) Hope it’s ok…if not please just email me and I will remove the link to your blog.
Lynne says:
October 15th, 2009
This too is our story but the getting to the OT part didn’t come until our son was 7 yrs. old. We had done speech therapy until then and gone through a lot of trial and error because the services we needed were not in our community. I wish we would have known what we know now when he was 3. He is in high school now and doing well but it has a been a much longer road to get there than it needed to be. Parents with SPD kids have got to educate the educators and the doctors because too few people understand. I am very grateful to the lady in the speech therapy waiting room who spoke out one day and told me she thought I should look into SPD as a possibility for my son. Without her doing that, we would have continued with our struggle of misdiagnosis.
Kim L. says:
October 22nd, 2009
I don’t know where we would be without our OT angels! Jack was 3 when we learned that his perplexing behavior was sensory based. By that time, we were exhuasted, stressed out, and in tears most days as we desperately searched for someone to listen to us and help us understand our son. When we were finally told to look into “sensory integration” and “sensory processing” by an early educator, all of the puzzle pieces fell into place. How could we not have seen it before when it was all right there, so clear in his words and behavior? He was diagnosed with severe sensory modulation issues affecting all of his sensory systems. Mostly, we learned the importance of listening and believing–every word and every behavior was a valuable clue into how we could help his nervous system get what he so desperately needed. This empathy and the start of occupational therapy with an OT certified in sensory integrative theraputic treatment changed our world almost overnight. Today, he is 8, loves school, excels academically, has many friends and lights our life with so much joy. In his own words when we asked him if he could remember how he felt before he spent lots of time with ‘teacher Kim’ and ‘teacher Zoe’ (his OT angels): “Mom, when we used to go downtown, it sounded like a herd of elephants in my ears. Now, it just sounds like a herd of ants!” I’m forever grateful for Kim and Zoe and the work of Jean Ayers and all of the OT’s and other professionals and parents advancing the treatment of kids betrayed by their senses. Keep spreading the word. Please financially support the amazing work and research of Dr. Lucy Miller at the SPDFoundation. Without the dedication and energy of all these angels, I can’t imagine where my child would be today.
Tracey Spaventa says:
October 23rd, 2009
Reading this article absolutely gave me chills. I don’t think I’ve ever read a story that came so incredibly close to ours. We have two sons. The older one, 6 years, is our sensational kid. He’s a sensation seeker and to hear you describe what you went through is like I’m telling my own story. The greatest gift I ever received was the name & phone number of a pediatric OT group from the director at our daycare center back when he was 4. Its been a long journey, and there are days when I feel like I’ve been beaten against a rock. I can see now though how far we’ve all come as a family. Thank you for sharing your story. I’ve posted it on my facebook page in hopes that it will help our friends and family members “get” our situation a little bit better. Best of luck to you and your family!