Updated January 2022. A fantastic resource is Raising Kids With Sensory Processing Disorders: A Week-by-Week Guide to Helping Your Out-of-Sync Child With Sensory and Self-Regulation Issues.
Sensory Processing Disorder for Denver Kids
My daughter Scout was diagnosed with Sensory Processing Disorder about 8 weeks ago.
It started a while ago… we just thought she was being a pain-in-the-butt 3 year old.
“NO! I won’t wear underwear….
or my coat
or socks
or certain pants
or shoes that aren’t tight enough
or pajamas
or blankets when I sleep”
I thought she was just exercising her independence. One day, back in August however, she said something to me that hoisted the big, red flag. “Mommy, I can’t wear socks with writing on the bottom.” WHAT?
So, I started doing some research and thank goodness for my friend Jen, who I just happened to be having lunch with on the ‘sock day.’ She described her sons issues around wearing clothes, or not wearing them, and it matched Scout exactly.
In a nutshell:
“Sensory Processing Disorder (SPD, formerly known as “sensory integration dysfunction”) is a condition that exists when sensory signals don’t get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological “traffic jam” that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively.”
Next step – total panic. “It’s my fault. I haven’t been a good enough parent.” I walked around saying this to myself for a few days – and then got over myself. Why do we always make it about US?
Made an appointment for Scout at Colorado Children’s Hospital. We had to wait two long weeks before the appointment. When you kid won’t wear clothes, this is kind of a long time.
I started reading and tried to stay calm. Some Sensory Processing Disorders are related to ADD, ADHD as well as certain forms of Autism. I was terrified and I had no information except what I was reading online.
The day of the evaluation at Children’s, I was a basket case. We made it into the waiting room and I had to go stand outside. Kids were coming out in wheelchairs, and some, not even old enough to sit up straight in a wheelchair were being wheeled out the door – and the moms and dads were STANDING? How, I do not know. I was aching for all the people I saw that day and so scared about what Sensory Processing Disorder would mean to our family and to Scout?
We got to sit in a room with a double pane of glass and watch a Physical Therapist work with Scout on several activities for 2 hours. Scout was so amazing during this process. She did so well.
When the evaluation was over, we left with this:
“Children’s Hospital has a 6-month waiting list. We will send you our findings.”
I was beside myself. No tools. No answers. Nothing.
So, I started doing more research and found a place that I could take Scout to once I had the finding – which we were fairly certain, that yes, Scout did have SPD.
We have taken to therapy once a week. Therapy includes a lot of heavy work and crashing. Jumping, hopping, lifting, pulling, climbing, falling into pillows. She LOVES it. It also includes a Sensory Diet. Not food-related, but homework, essentially. We do BRUSHING THERAPY three/four times a day. Basically, take a soft-bristled brush and literally brush Scout’s arms, legs, back and feet. We do trampoline jumps, and crashing, hopping, skipping and tons more at home, every day.
Scout has turned into a TOTALLY different little girl. She is pleasant and we don’t fight. Prior to the diagnosis and therapy, everything was a battle. As you can imagine? You cannot make your kid go to school, or anywhere else, without clothes?
Scout is flourishing. She is COMFORTABLE!!!!! She is sleeping. She wore NEW PANTS every single day last week (I bribed her) but it worked. She is wearing SOCKS. She is wearing HER COAT. I don’t hear “I’m uncomfortable” anymore. Which was her #1 word for MONTHS.
We feel really great that we jumped on this and didn’t brush it off. I am so thankful that we have found a great place to take her for therapy. SPD can be turned around – we are here to tell you. We are really lucky that we got her in early… they can work faster and changes come quicker (for some). I am so proud of her.
These are the moments and days, weeks and years of parenthood, you don’t prepare for… you can’t.
Guest blogger Ashley E. Kingsley thrives on connecting people and is a solid engineer of community. Disclosure: This post may contain affiliate links. While clicking these links won’t cost you extra money, they help us keep this site up and running. See our disclosure policy.
Author: Mile High Mamas
Amber Johnson
Love this. And to think you’d still be drowning a bit if it wasn’t for your great friend. I’m so happy that therapy has proven to be effective and that she is turning into a different girl!
Joan
Have your read Lucy Miller’s book Sensational Kids by chance? It is quite good. Also, the Sensory Processing Disorder Foundation has some great resources on SPD and sensory issues.
Melissa
Wow! Thank you so much for sharing that. I am happy your daughter is doing so well. I hope this post is encouraging to other parents. 🙂
LaniJ
Thank you for sharing this? My son may have SPD (still undergoing evaluations).
I found another person’s helpful story. http://www.fivehens.com/adhd-maybe-not-spd/
Lisa Vratny-Smith
Great post, Ashley! My younger son has a variety of sensory processing issues as well. I was so fortunate to have worked with fabulous OT’s and kids with SPD, so I recognized his early signs fairly quickly. Early intervention was key in helping him work through his difficulties.
In my work with preschoolers I find most behavior problems I see have some kind of sensory component and that meeting those sensory needs can lead to dramatic changes for kids, parents, and teachers.
A note for the future, we started sensory diet strategies at the age of two and after a while my son didn’t need them as much. Then, in first and second grade he began having some struggles in school that didn’t initially look like sensory issues. We consulted with an OT and reinstated sensory diet strategies at home and school. This has helped a great deal and has given us the opportunity to educate his teachers and other parents about SPD. Different stages in life bring up different sensory issues, so we need keep re-evaluating their needs.
Also, another great book is The Out-of-Sync Child by Carol Stock Kranowitz. She has several companion guides as well.
Glad your daughter is doing so well and that you are seeing the positive results of all the effort you put in to your “homework!”
Lori Lavender Luz
I’ve been in that Children’s Hospital waiting area. I’ve felt the anxiety.
I’m so glad Scout is doing well with her therapy. Great post about the parts of parenting that there’s just no way to prepare for.
Good luck from here on out!
Lisa Trank
This is eye opening and wondering if Kaiser Permanente has any options for testing? One of our twins has always had huge issues with an acute self-consciousness, which is now having some impact on school, not in terms of acting out, but in anxiety and freezing up. Thanks so much for your sharing on this.
Rich Anderson
Wow…I had no idea Ashley. Thanks for sharing and Im glad that Scout is back rockin’!
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Rebecca
My son, Zach (4), was initially sent to evaluations because they thought he had SPD. Turns out he’s got Asperger syndrome instead and SPD is a HUGE part of it. It’s not that he doesn’t like clothes…he loves long sleeves and long shirts in the summer and being naked in the winter (super fun this week!)
He LOVES OT and it’s done wonders for him. I can’t express enough how important the interventions have been for him. And, I can’t express enough how empathetic I am to the ‘waiting room’…it was nerve-racking!
Whitney
Ashley – Thanks so much for sharing such an important story! You have been nothing short of amazing through this entire process!
Alaina
Hey Ashley, thanks for sharing your story. My oldest son has mild OCD and the way it manifests itself changes from time to time but when he was younger it was definitely sensory related although it isn’t any more. At this time we don’t have him in therapy or on any medication because he seems to be in control of it but I have done a lot of research on natural supplements that really seem to help him so you could look in to that as well to see if there is something for SPD.
Melissa Taylor
okay, okay, I need to do the brushing . . . it’s just on top of everything else I haven’t been able to manage with AJ’s other issues and regular therapy. But, you’ve inspired me that it could and will really help. . . sigh.
Does it get easier?
Ashley E. Kingsley
Thank you all so much for your encouraging words, your thoughts and your kindness. This is such a journey, parenthood, and all that comes with it. Without the unity, I don’t know how I could do it. Thank you so much for posting Amber, and bringing this conversation forward today. It is an important one. I have had people reaching out to me all day – wondering… “Is this what my kid has?” Or, “What if…. and What happens when… ”
Yes, it does get easier. And then it gets different. We are still so new into the diagnosis. We are learning as we go. We are just so thankful to have resources and friends, community (thank you Twitter and Facebook) and people that have been so kind to reach out across the web.
Keep posting. Keep writing. Keep sharing.
Twitter hashtag for Sensory Processing Disorder is #SPD Great resources indeed.
Cheers all,
Ashley
Melitsa
That was a pretty good time from referral to being seen, although it must have seemed endless. I can relate.It makes no sense at the beginning andthen explaining brushing and sensorydiet. Thanks for sharing your story.I hope it continues to encourage parents to have that conversation they’ve been putting off
Heather
Are willing/able to share where you are taking your daughter for therapy? We are searching for a good fit for our two daughters adopted from foster care, and it’s always helpful to know where other moms have had good experiences. Thanks for a great post!
Tosha
Wow!! This is my daughter, exactly. We have an appointment to see an OT for the first time next week. I pray we get good results like you have.
Lisa V
My 6 yr old DD has SPD challenges with clothes. Socks/underwear are the worst. I have found some socks she will wear if whatever she’s doing absolutely requires athletic shoes, otherwise she goes without. This is not too difficult as we live in Houston. We do like to ski in Colorado though. Since you are in Denver I thought you might know where to find SPD-friendly ski socks?