Mission Statement

To provide a place for parents and family members to meet and share experience, strength, give hope and awareness, to other families who have similar experiences raising children with ASD, ADD/ADHD, SPD, Anxiety and other mental health, developmental, or behavioral struggles. Through sharing in this experience of raising these ‘hard to raise’ kids, we grow stronger and more resilient.

Friday, October 26, 2012

Sensory Processing Disorder

Jen & I decided to do a little two part post about our children's struggles with Sensory Processing Disorder to go along with Octobers Sensory Processing Disorder Awareness month. In this post we will each talk a little about our sensory kiddos & some things that helped!

Visit the SPD Foundation for some great resources. 


Emma came into this world unregulated. From the time she was born, she fussed and cried, didn’t like loud noises, crowds, the car seat … and the list goes on and on. Now there were significant medical struggles, but I had never seen a baby so “rubbed the wrong way” by everything. I used to say that if she had it her way she would have stayed in the womb forever! As time went on and we got somewhat of a handle on the medical issues (at about 18 months) I started to put 2 and 2 together and realized there was something more there. Early Intervention started doing OT in our home for feeding therapy, this OT quickly realized we were going to get nowhere with food issues until the sensory stuff was dealt with. That was the first time I heard the term, being the mommy that I made a mental note and later hit Google. I was shocked at the amount of information there was on “Sensory issues”. A few weeks later we had an “official” diagnosis of Sensory Processing Disorder and started more intensive Occupational therapy. That all seems like a lifetime ago! We are currently on a  hiatus from OT, have done swimming lessons (which works wonders for Em) and I have tools that help with some regulation. Here is Emma’s Sensory profile: Emma is a “sensory seeker” when it comes to vestibular & proprioceptive input. That girl N.E.V.E.R stops! She is like a piggy tailed version of the Tasmanian devil!  She is also an oral sensory seeker, which totally explains how I ended up the human pacifier while nursing. Emma is a sensory avoider when it comes to touch (especially if she is not expecting it), sounds (the mall is torture), smells, and clothes (socks, tags, to tight, itchy, etc). I have tools to help - chewy’s, weighted blanket, we opt for a lot of cotton clothing, swing, ear plugs and A LOT of physical activity. Emma does dance class and swimming lessons and we have kind of adapted to this not so conventional norm. Even with these tools, some mornings are downright painful. All of her clothing feels “weird” or “itchy”, it sounds like a torture chamber in my bathroom when I am combing her hair and getting her in the buckle in the car seat feels more like a game of Twister. We have days she is much more easy going and days that everything and everyone bothers her. Days that she can sit nicely and color or watch a show and days that she is literally jumping off the stair landing onto the couch over and over! I have learned to adapt over the last few years, it still isn't easy but having some answers does help. I know what tools usually work for Emma and I can pull out my “Sensory Aresenal” and get her something to help. SPD is not our only issue, but it is one of the big ones. I have learned when other things are “off” the sensory issues seems to get worse (sick, hurt, anxious) and that I need to step up my game & plan for the worst. I encourage anyone with a child with sensory issues to do at least some OT so you know your child's sensory profile, what could help, triggers etc. Keep your child active and put together your own “Sensory Arsenal”. On the topic of special needs items, lets just say OUCH! I am always shocked at the cost of some of this stuff. There are a few things that I pay for because it is worth it, there are some thing that I tweak and find alternatives. Chewies are one thing I just pay for, I did try alternatives and they just were not the same for her! Fun & Function is a great website for special needs tools, they have pretty much anything you could think of and their prices are actually much more affordable then anywhere else I have looked. I also love that you earn points when you order than you can put towards future purchases. Now, if your curious, here is some of the things we keep in our arsenal.. 

Super Chews
Chewy...  we have it at ALL TIMES!  She uses it when she is stressed, tired, or needing oral input.


No-Spill® Bubble Tumbler®
Bubbles are great to facilitate deep breathing.
Weighted lap pad. With us always & great for car rides.


Play dough. I don't take this out & about with us but it is great for some sensory input at home
Moldable ear plugs, I half them and they fit perfect in her ears. 
Stress balls - Emma calls these her "mad ball" great when angry or for some input out & about


I use this for both of us... it is a great calming oil by doTERRA. I keep it in a roller bottle and Em will put it on herself in the car or somewhere she is feeling anxious or out of sorts.



I hope that provides a little insight and help to some of you. SPD continues to be a roller coaster and something we have to plan for and work around daily! 
Lindsay 

Hi - It's Jen.  My story is a bit similar, but Hudson did not come into the world un-regulated.  Hudson was sweet and calm and loved to be swaddled.  In hindsight, that was the only way he slept without me.  He did not nurse too long, but when he turned about 18 months we started having loads of problems with clothing.  Hudson would scream for 5 minutes per item of clothing.  Each sock was a chore and when it was winter - forget about it! He also was hugely sensitive to food textures and hot and cold. He would not eat without gagging and would often throw up because he overstuffed his mouth and could not move the food back.  This was a huge source of anxiety for me because my other son was a great eater and Hudson wasn't not growing.  We started getting OT in house and then through a clinic. I learned about Hudson's sensory profile too.  

Hudson is also a sensory seeker and loved proprioceptive input, the more physical the better - tickling, flipping, swinging and wrestling are his favorites.  I discovered that I never had screaming fits about clothing when it was bedtime.  This baffled me for a while, until I remembered our routine.  He always had a bath, or a shower at night.  He was getting loads of input on his skin!  So, we do lots of physical stuff and lots of skin compressions to get him calm and regulated.  I also know that everyday - even today, when I put his shoes on he is going to scream that they are too tight!  But I am trying to let him scream about it for ten minutes.  If he can wear it that long usually, it subsides.  So, we get dressed early. Sometimes we even shower in the morning when it's going to be a cold day. I will often just pick him up and carry him to the car so his feet don't have to be so squished in his shoes.  By the time the drive is over he is ready to go. When he's anxious we use a quiet corner and he uses a weighted lap pad.  We use gum in the car and he is all about distraction of iPhones and iPads.  It seems a bit weird at first and believe me I have gotten my share of looks and criticism about walking into a store, putting my 4 year old kid in his stroller and handing him headphones and my iPad - but it is what he needs and what we need to do to get through the day and get things done.  I too have my arsenal.  Even though I have all of these tools, somedays it just doesn't work.  Now I also know that Hudson cannot decipher the sensory input that is coming into his little body and it's o.k. to leave the store or errand to another day.  

I know Hudson will always have sensory issues.  Luckily, in many areas they are improving.  His food preferences are still narrow, but improving.  OT helped us a lot, as did, swimming and horseback riding.  We want to know what works for you?
Jen

4 comments:

  1. Thanks so much for posting, it is so nice to hear from someone who TOTALLY gets it. Carson sounds alot like your daughter, constant on the go from the moment his feet touch the floor. He is a proprioceptive, vestibular, oral, and smell seeker. It makes for some exausting days LOL. He is a noise avoider when it is not in his control but when its his music, his control, he is a seeker. It is truly so nice to read and feel not alone. Thanks again!

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  2. Hudson is the same with music as your son. So glad you can relate. It's nice to find people who "speak our language."

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  3. My daughter is 9, but we didn't even hear the term "sensory processing" until she was almost 6. We have learned to recognize when the "misbehavior" is caused by sensory overload. Then we do what it takes to get her "balanced" again. We have little extra financially so I have modified many ideas from the "Out of Sync Child Has Fun" book. We use a lot of bubbles, play dough, regular swings, movies, books, paint, etc. My Gym in Layton has been a life-saver alternative to OT. Now my daughter is a little older, we can talk about what she needs to be comfortable. That is our goal...we can't control everything in our environment but we can figure out a way to cope with it and get "comfortable" again.

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  4. I knew my son had SPD about three years ago. A friend told me about it and I did some research online and everything fit him to a T. When I took him to the doctor - he didn't believe in SPD and diagnosed him with OCD and prescribed him prozac. This terrified me but because he was our trusted family doctor I gave my son the medicine for a few months. I didn't like how the medicine made him an emotional zombie and so I took him to a OT center in Ogden, UT. They officially diagnosed him with OT and that fist visit was about $100 as insurance did not cover it because it was not an official recognized disorder. I learned some tips that helped but realized I couldn't afford to keep taking him in for sessions so I decided I would just deal with it as best I could. Earlier this year during his annual checkup he refused to get his immunizations. He freaked out on the doctor and the nurses and nearly destroyed the room. The doctor said that he would allow my son to go another year without these immunizations but that if his behavior stayed the same and interfered with normal life - he would need to be treated again for OCD. Well, that bothered me andI did my best to tell myself all would be well. Last week my OB told me that all my kids would need flu shots or they would not be able to be let in the hospital when my baby on the way is born. They also wouldn't be able to be around the baby for weeks after it's born without the flu shot. So I took the kids to get their shots today and the scene that my son pulled was so unexpected and so stressful that I broke down in tears and cried in front of the entire grocery store. We had a huge audience watching as he thrashed his arms and legs and screamed that we were murdering him. I'm sure people wondered why I was making him get the shot and if course they did not know about my baby and what my doctor had said. We had checked several places prior and they were all out of the mist spray - so the shot was our only option. Needless to say they refused to give him the shot because he was so out of control. I couldn't hold back my emotions and I bawled like a baby. After today I realized how serious his disorder is and I'm feeling low on options. I was very glad to find your blog post. Thank you!

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