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Saturday, September 20, 2014

Our Sensory Processing Sleep Solutions...

I have two sons with special needs.  Jordy is 12 and has autism, anxiety, and OCD as well as severe Sensory Processing Disorder.  Cam is 6 years old and has 22q11.2 Deletion Syndrome, PVNH, EDS, and several medical problems related to all 3 of those diagnosis'.
One of the biggest issues parents of special needs children deal with is sleeping.  A lot of kids continue to keep their parents up all night the same as an infant does for years.  I am fortunate in that my kids don't usually keep me up all night, but we have our own set of problems.  This summer we had an experience with Cam that made me realize how dangerous sleep can be.

A lot of kids with special needs have sensory issues.  When they struggle with several it is diagnosed as Sensory Processing Disorder.  Basically all the things that affect our senses is processed differently for them.  Some are seekers, and some are avoiders.  Jordy has mostly seeking tendencies, but also has a few avoiding issues as well.  He craves intense foods and flavors because of the lack of input he receives through his mouth.  He will often chew on things when he is anxious.  His favorite food is onions...and has been since he was about 1 year old.  He has been known to add onions to Lucky Charms cereal! It was one of his first signs that something was a little different than the average kid.

Cam is more of an avoider.  Loud noises and sounds really bother him and he will cry until the sounds are gone.  Going to sporting events, plays, amusement parks or even movies are literally painful for him.  I was able to buy some headphones for him so he is able to enjoy life.  It has made a HUGE difference.  I remember the first time he used ear plugs.

I started to avoid taking Cam to places I knew would be too loud for him.  It had been about a year since I had taken him somewhere that was loud so I kind of forgot what a problem it is.  We went to a BYU football game and as soon as we got there I regretted it.  He was SO excited to go, but the stadium was so overwhelming.  The roar of the crowd and the unexpected canons going off put him over the edge.  He buried his head in my lap covering his ears and cried.  I felt awful.  How could I forget that he wouldn't be able to tolerate the sound?!  It was all I could do to not start crying with him.  I convinced him to go into the bathroom with me so we could regroup for a minute.  I spent some time calming him down and telling him how sorry I was that I forgot it would be too loud for him.  I told him that we could walk around to all the stores in the stadium and look for some earplugs.  As I was having this conversation a nice lady was listening in.  She offered me a pack of earplugs she kept in her purse.  She saved the day for me and for Cam.  We got them put in and headed out to find our seats.  When we got out there and the crowd started going crazy Cam looked over at me and got the biggest smile on his face.  He said, "It doesn't hurt!".  He stood up the rest of the game cheering, singing, and laughing the entire time.  It was adorable.  The first thing I did the next day was buy some headphones.  His life is so much more fun!

The list of both of the boys sensory issues is long!  It could (and should) fill a separate blogpost!

Sensory issues can impact a person's life more than any of us realize until we are the ones dealing with it.  The book, The Out-of-Sync Child is really great for figuring out whether or not your child is dealing with sensory issues.  It was a game changer for us and was what really helped us get on the right path for getting Jordy diagnosed with Autism.  As a parent that deals with sensory kids you start to look for anything you can that will help you child function in a world that is too overwhelming.  When Jordy was chewing everything to pieces in school I offered to send bubble gum with him.  I wondered how the teacher would react, because bubble gum is against the rules.  "YES! Send bubble gum!" was her reply.  When Jordy had the urge to chew on things he chewed gum instead.  It worked!  A simple solution to a huge problem.

Sensory issues can often cause problems for sleeping as well.  Cam and Jordy both tend to cover their entire bodies when they sleep including their heads.  I will often go and uncover both of them during the night, but they will immediately cover their heads again.  I haven't worried too much about it assuming they are both filling some sensory need that they have.  This summer however my perspective changed.

I was volunteering at a youth group camp for our church.  My mom had agreed to keep my kids for me while I was gone.  The kids are always excited about having a sleepover at Grandma's house.  Jordy was on the couch and Jacob and Cam were sleeping on the floor with some big blankets that Grandma laid out for them.  In the middle of the night my mom woke up to a strange noise.  She described it as one of the scariest things she had ever heard.  She wasn't sure if it was an animal outside, she couldn't imagine what could be making such an awful noise.  She went to check on the kids just in case.  What she found was even scarier than the noise.  Cam had wrapped himself tightly in the big blankets.  He had actually mummified himself.  He was not getting any oxygen and the sound she was hearing was his body retching for air.  The scariest didn't wake him up.  He is a deep sleeper and suffers from sleep apnea.  The lack of oxygen didn't wake him up, but did cause his body to react as he tried to breathe.  My mom rushed to untangle him from the blankets that were wrapped so tightly around his face and body.  Cam never woke up through the entire ordeal.  When I called my mom the next day to thank her for watching the kids she told me the story.  It was so scary to think about what might have happened if my mom hadn't heard him.  I was just sick to my stomach trying to come up with ideas that would literally save Cam's life during the night. I immediately began to research blankets for special needs kids.  There was not a lot of options or help.  I came up with the idea of crocheting a blanket with a giant hook and a double crochet knot so there would be big holes in it for him to breathe through.  We headed to the fabric store to pick out a soft yarn that was a color he liked (orange...I hate orange) and I began making the blanket.  I sat next to the pool in 100 degree weather crocheting my life saving "blankie".  It worked as far as covering his head and allowing him to still breathe.  There was a small problem though.  Cam didn't stay warm under it and he started going around the house finding other blankets to cover up with at night.

A few months before Cam had his sleeping scare I had been looking for really cute bedding for my 3 year old little girls room.  I came across a new company called Beddy's that was doing a kick starter campaign for their new zipper bedding designed for kids to be able to make their "bed with ease"--Beddy's.  It was an idea stemming from a mom not being able to make her kids bunk beds (we have this issue as well, it's just at the bottom of my issue list;).  I had ordered one of the comforters for my daughters bed because it was darling and just what I was looking for.  I had to wait awhile for the order to come in though since it was a kick starter campaign.  As I was trying to figure out what to do for Cam I remembered the zipper bedding.  I looked through the options and figured it was worth a shot.  Bedding that he would not be able to wrap around him because it is literally zipped to the was the best option I had seen.  The bedding was not made for kids with special needs.  It is a great idea, really functional, and super cute.  That was what the company was aiming for.  What they ended up with though for me and my family is a product that offers me a good nights rest knowing that Cam is SAFE and WARM in his bed sleeping.  We have had the bedding for almost 2 weeks now and it is a huge hit!  I also got one for Jordy hoping that it would also help his sensory sleep issues.  I have a weighted blanket for Jordy, but it doesn't cover his entire body so his feet are usually left uncovered and cold.  They both LOVE their new Beddy's.  They also can both make their own beds now, which is awesome and has helped build up their self-esteem.  We have already had one bed wetting experience and also Cam woke up with blood coming out of his ear one morning and they have washed great and the stains came out easily!  They are super soft and comfy and my other kids were asking for their own Beddy's the next day.  I'm not sure how many other families with sensory kids would benefit from this bedding...but it has really helped us!

My son and the son of this mom inventor (Betsy) had played ball for a couple weeks together and we had become Facebook friends.  This is how I found the kick starter campaign in the first place.  I gave her a call to tell her how amazing it has been for us and she said she had many other customers with special needs kids emailing her with similar stories.  I have never endorsed a product through my blog, and I have not received any money from the owner's of Beddy's.  I just know that a few months ago I was stressing to the max imagining Cam suffocating in his sleep, and I looked for personal experiences through the internet to help me.  My hope is that if anyone is struggling with the same issues I was, they will see this and be able to rest a little easier!

I asked Betsy if she would mind if I talked about how awesome Beddy's is in a blogpost.  Her response was awesome and truly shows her character.  She has offered a special discount code to use at check out for all my readers!  It is a savings of $30 off the purchase price and they are donating $5 to the Dempster Family Fund which funds research for 22q11.2 DS every time the code is used!  I think this is awesome and I'm so grateful that she is offering it!  The code will be good for orders through the end of November 2014.

Use code Beddysfor22q at checkout.

Check out how soft that inside layer is!

 I never claimed to be a professional;)

 The perfect combination for our different sensory needs!!

 Jordy uses his weighted sensory blanket over his Beddy's now!

This bedding is just darling!

Thanks Betsy, Angie and Beddy's for making my nights and mornings a lot better!

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  1. My Grandson has been on the Autism Spectrum including all the sensory issues you have mentioned and more. My daughter Andrea had done an incredible job with research and diet changes to help him. He is now attending a neuro-typical school. She has a blog called and a closed Facebook page with over 4000 followers helping many other parents with their children. She is a TACA representative and has been asked to speak about their journey. Please check her blog and I pray it will be a blessing to you and your family.

  2. my Husband flies the F15E for the USAF and I’m a Ret. LEO. But our most important work is being foster parents. We have twin 10 yr olds with severe disabilities and one who knows and understands his brothers dissabilities but is perfectly normal minus the trauma they’ve both shared over the long 10 yrs of abuse that was their life.
    This spoke to my heart. When you work with kids who deal with trauma ...sleep is a big part of all that is good or all that is bad.
    Take today. Up at 4 am and out of the house For a 45 min drive to get one boy an MRI. Having a bed that takes 3 min to make is pivotal to not being late or even more important to the kid feeling successful at making it himself. It’s his first bed in his 10 yrs and he got to pick the bedding that works in his loft bed so he can draw underneath. Seems silly and meaningless but no really it’s the first time he’s ever had a bed of his own that he sleeps in. He loves to sleep now and though he doesn’t always like to wake up He likes keeping his room made to look nice and Beddy’s help make that struggle easy.
    I’ll be honest I’ve never spent that much on bedding for our king sz bed let alone a twin set!! But after two months now i can vouch for it being worth every red cent. We’re saving up for another set. The simplicity of it is just priceless. I can imagine kids not having their own beddys when they come to our home. I can’t imagine them leaving without their beddys. I hate that some do leave and we have some who will always stay beddys is now going to be part of our family ritual so Get to work on more kid friendly Stuff... wegot parentingto do here in IDaho!!