My Letter To The DSM5

This is a comment directed to the APA for inclusion of SPD into the DSM5.

I am a parent of two children with Sensory Processing Disorder.  My oldest, David, now 9, has had feeding issues since birth.  He was unable to breastfeed and had difficulty with a bottle.  He struggled with weight gain, was considered failure to thrive,  and was delayed on all milestones.  We were referred to neurologists, hematologists, and other pediatricians for second (and third) opinions.  No one could give us an answer to our son's quirky behaviors, why he couldn't eat properly, or why he was delayed in gross and fine motor skills.  

After four years of blood tests and constant doctor visits, a friend of a friend told me about Sensory Processing Disorder (SPD).  Our pediatrician wasn't knowledgeable in SPD, so I took it upon myself to secure an evaluation with an occupational therapist.  David was diagnosed with sensory modulation problems, low muscle tone, poor coordination, tactile defensiveness, and motor planning problems.  The poor child's vestibular and proprioceptive senses were completely "out of whack" causing him to avoid any physical activity.  He was unable to tell his body how to move, so he was unable to roll over, sit, crawl, or walk on time.  Worse, he wasn't able to perform the motor planning to chew or swallow most foods.  His low muscle tone meant that he was in physical pain just from the act of chewing.  

By the time we found this out he was nearly five years old.  Due to a wait list for speech therapy, he wasn't able to receive services until he was eight years old.  By then, it was too late.  He is nine years old and can only eat soft foods that are easy to chew and swallow.  His health is suffering because of his poor food intake.  

I strongly feel that if his pediatrician had known about SPD when he was a baby that he could have received help sooner.  Earlier intervention would have allowed him to learn how to chew and swallow.  Luckily, we have avoided a feeding tube, but his eating habits are not anywhere close to normal.  It is a struggle that we face at meal times and throughout the day as he is always hungry, but unable to eat properly.  

I'm Raising Bees

Yesterday on my Facebook I saw one of the best quotes I've read in a while.  

‎"Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid."
— Albert Einstein

How great is that?  I so wish my SPD kids could understand the meaning of it.  I had to share it on my Facebook and my cousin posted the Animal School video link.  Go here and on the right side is the Animal School video.  

I'm raising bees, how about you?

Oprah Features SPD

After 10 years of trying to get Oprah to do a show on SPD, this is a good thing, right?  That's what we are fighting for- exposure, understanding, and to tell our stories.

It would be a good thing if Oprah's show had gotten anything right. The show was about mental illnesses and children.  SPD is not a mental illness; it is neurological, but not a mental illness.  A mental illnesses are  "conceptualized as disorders of brain circuits likely caused by developmental processes shaped by a complex interplay of genetics and experience."  Insel, T.R.; Wang, P.S. (2010). "Rethinking mental illness". JAMA 303 (19): 1970–1971.doi:10.1001/jama.2010.555  You do not "learn" to have SPD.  It is thought to have a genetic basis, but it isn't learned.  There's not a stressor that can cause someone to develop SPD.  There are not social factors that work with biological factors to make a person develop SPD.  


Maybe the child does have SPD, but SPD will not cause the behaviors that were the basis of the show.  This child was so violent that his mother was terrified of him.  While my heart aches for this mother, this is not SPD.  The child may have been diagnosed with something else that causes this violent behavior, but the show did not specify if this was the case.


It saddens me that with the large viewer base that Oprah has, this might be many of their first impressions with SPD.  Mothers of children with SPD have been educating people and fighting for our children's voices to be heard for years and this is a major set back.  


The SPD Foundation is asking for a grass roots effort of 10,000 letters to Oprah with facts about SPD.  You can go here for information on where to write and some ideas of what to write. 


   

Playing The Card

I don't even remember when I told my now eight year old that he had SPD.  OT was always "play" and I tried to never mention SPD in front of him.  While other kids were riding bikes outside, I made sure he never heard me tell another mom that he has low muscle tone and can't ride.  I have been very specific telling his teachers, and especially his gym teacher, never to give him the chance to opt out.  Treat him like any other child and if he just can't do it, please know he's not being defiant.  Always offer the finger paint and the rope ladders and he will try it.

He was about second grade when he finally asked me what SPD was.  I briefly explained it to him what it was and that it just meant that he had to work harder at some things.  I do realize that his SPD is very minor compared to what some children have to overcome, but he still must overcome it and never use it as an excuse.  When he gets frustrated that handwriting is hard or gym class is hard, I tell him he has to work harder than some kids do.

You can imagine how upset I was when he was struggling with dinner and informed me that he can't chew or swallow because he has SPD.  He said it so matter of factly, like it was just a fact of life and not open for discussion.  I was mad!  It took a lot of strength to keep my composure.

He may have SPD, and some things may be more difficult for him, but we will never just accept it.  We will work hard and we will overcome the weaknesses.  It may take weeks and months before he can learn to chew and swallow a food, but we won't stop until he can do it.  It may take him longer to tie his shoes or climb a rock wall at the park, but he will not give up.  He will try until he can accomplish it.

I will not let him give up.  I will not let him use any weakness, SPD included, as an excuse.  He will work harder and I will be there cheering him on every step of the way and celebrating his victories, no matter how small they may seem.  I will do all that I can to make the journey a little easier for him along the way, but he will learn that he has to work hard and he does not have to accept any limitations from SPD or anything else.

Like the Cub Scout Motto- Do your best.  I won't settle for anything less than his best.

Handmade Sensory Toys And Equipment

Many products that can help our sensational kids are very expensive and available in a limited number of catalogs.  This leaves us parents trying to budget our money to get the help we need or start thinking outside the box.  Personally, I like to think outside the box.

Fortunately, I am pretty crafty and have a lot of tools to make my own therapy helpers.  There are some things, like anything that involves a sewing machine, that I can't make myself.  Some of us aren't crafty, so what can we do?

Etsy.

Etsy is the leading online marketplace for all things handmade, vintage, and craft supplies.  It's made of millions of different sellers that make everything from jewelry to clothing to, yes, even sensory toys and occupational therapy needs.  I've been selling on Etsy for almost three years and it still isn't the first place I think of for therapy helpers.  One of the best features of Etsy is the ability to request custom items.  You can use Alchemy or find a seller whose work you like and ask if they can make a custom item.  You can get weighted vests with your child's favorite character on them.  Find chewing necklaces that your child will want to wear to school.  Here's a treasury I made of just a small selection of sensory helpers available for sale on Etsy.  A search for sensory, occupational therapy, and autism can yield thousands more.  (Some good treasures are tagged for autism, but they work very well for our sensational kids as well!)

Chewing

Neither of my sensational boys has every been a chewer.  David avoids nearly anything in his mouth and Caleb has been pretty typical.

Till now.  He's chewing on everything.  The DSi stylus, LEGO bricks, his nails, his toenails.  I bought him Twizzlers to chew on, but he doesn't like them.  What are other good chewing foods?

I want to make him a chewy necklace for school.  The only thing I've come up with is buying a baby chew toy and drilling a hole for a necklace?  He's five, so he needs something that's big boy and definitely boyish.  He is in preschool, so it's not like he has a pencil in his hand to have a pencil topper.

I feel so bad for him.  He gets embarrassed when I catch him.  I don't scold him, I tell him he needs something safe to chew on and offer a Twizzler or crunchy food.  I don't like offering food because of David's eating issues.

Calming Down After Sensory Overload

All children experience sensory overload, not just our sensational SPD kids.  The world gets too bright, too noisy, and too rough, and it can be too much to handle.  Add in a rough transition and it's enough to make anyone cry.

I have a sensational boy who is constantly over stimulated because the slightest touch feels like a hard slap.  I also have a sensational boy who needs to constantly jump and crash for proprioceptive input.  I have to help each one individually when they hit sensory overload.

The first way to help is to avoid it.  My kids have a hard time transitioning after school so we don't go to the store after school.  Ever.  Not even for one little thing.  Unless it's an emergency, we go home.  I also know they just can't do more than two stores at a time.  This takes extra time because we may have to go back in the same direction later, but it's worth it.  Trust me.

Hungry kids are more likely to melt.  My kids get fed a full meal before leaving the house.  This doesn't stop any of them from being starving five minutes into the ride, but it does help their attitudes.  They still salivate at the sight of the golden arches, but I can firmly say no.

There are times when sensory overload is bound to happen.  When we are out with family all day I know there will be melt downs. Here are some of my tips to help:

1. Proprioceptive input is your friend.  I don't take the brush with us, but I will do joint compressions and have them jump.  They mumble and moan, but it really does help.  If it's nice out and you can get them moving that works too.  Even walking around a parking lot outside and away from the noise and lights will help.  
2. Deep pressure.  Same idea as above, but my younger sensational boy benefits from bear hugs.  If he has completely melted and can't control himself, this gives him the proprioceptive input as well as restrains him.  I need to protect him, others, and objects from his destruction when he hits his breaking point.  
3. Remove them from the situation.  Get outside weather permitting.  Take a walk, hop, skip, jump.  Do anything to get away from the lights and noise.  Ask what's bothering them and see how to help.  Sunglasses?  Food?  
4. Don't let them get bored.  A bored child will have more melt downs.  Their minds must have more time to focus on the sensory overload or something  If we are with family or a group, I leave two kids with their dad and take the melting one away from the group.  No fanfare, just quietly leave.  If the group doesn't understand, next time remove yourself and leave the child with them.  I kid.  Maybe.  
5. Give them snacks.  Crunchy snacks help because it gives a little proprioceptive input.  Always have snacks and drinks with you.  I like water bottles because you can refill them about anywhere and if they spill in the car or store it's not sticky and won't stain.  

Remember the best way to handle a melt down is to avoid it.  When you see the signs, do everything you can to get your child back in sync.  If your child wakes up out of sync, mine do, then don't leave the house unless aliens attack!

I know some of you wonderful moms have more tips and I'd love to hear them.  Please leave them in the comments.

Therapeutic Listening

If I wasn't convinced that TL was working before, I sure am now.  With the Christmas approaching, I've been packing orders for my Etsy shop or writing and I've been in a serious time crunch.  Unfortunately, I haven't been as consistent as I should be with the headphones.  I don't know why I let myself lapse; I know how much it helps him.  I knew that skipping headphone would mean a bad day the next day.  By nighttime, I'm just too tired to fight with him to do the headphones.

Yes, it's a struggle to get him to do the headphones.  It's even worse after a few days off.  When he hasn't worn them for a few days they are scratchy and hurt him because he is more sensitive to the feeling of the ear pieces.  He also just doesn't have the patience to sit and listen to them.

We play games and do puzzles for headphones time.  It's special mommy and Caleb time and that makes him a lot more willing to sit with me.  I think he knows now that the headphones help him feel better.   He's almost five now, so he can recognize that he feels better after headphones and brushing.  He doesn't know why, of course, and he can't yet tell me when he is out of sync.  That's a big goal for us in the next year for him to recognize when he needs something to help him regulate.

Tomorrow, we do headphones.  Yes, it's Christmas Eve, but he needs to get back in sync.

Christmas Gifts for SPD Kids

It's too late for Christmas shipping this year, I'm afraid, but my SPD boys have January and February birthdays. What are some good gift ideas?

I'm going to do a post tomorrow with some more ideas, but for now, share ideas.  Thanks xoxo

Speech Therapy for SPD Eating Disorders

The largest struggle we have with David's SPD are his eating issues.  As if taste, texture, and smell sensitivities aren't enough for the poor kid, he also has low muscle tone and poor motor planning.  For years he kept saying he didn't know how to swallow.  He lives on PB&J, how can he not know how to swallow?

Well, turns out he doesn't know how to swallow...new foods that is.  When things are new or different for him, he has a hard time figuring out how to swallow them.  He had a swallow test and upper GI and everything works right, so it must be motor planning.  The low muscle tone means he is actually in pain from chewing dinner.  He must feel like he's been working out for an hour just eating a meal!

After years of this, it's no wonder he's become the pickiest. eater. ever.  Ever.

I put him on the list for Speech therapy over two years ago and he finally got in about 2 months ago.  His ST is really silly and really gets him motived.  We (usually he) picks one new food every two weeks to try with her.  They play a game and take a bite in between turns.  The game is first; eating is secondary.  wink wink  He is rewarded with a turn on the equipment in the "big room" which is full of OT equipment he used to play on.

Today I took a slice of American cheese.  He ate half of a slice in 45 minutes.  We were thrilled with half a piece of cheese!   He even ate another half for dinner.  He promised her he would eat 6 half pieces in the next two weeks.

After School Transitions With SPD

David has always had more problems with transitions than his younger siblings.  Luckily, at age 8 he can handle the transitions fairly well even if he doesn't like them.  The poor guy eats lunch at 11 and doesn't get out of school until 3:30.  You better believe by 3:30 he's starving (insert best 8 year old whine here).  A starving, out of sync 8 year old who doesn't transition well is not a child you want to take to the store.

We head to pick up the younger two from their second week of preschool.  They are doing well, but still adjusting.  Caleb, 4, is the model preschooler until his tush hits the car seat.  Then all bets are off.  He doesn't stop screaming, crying, and fighting until bedtime.

All I had to do was a quick stop at the post office and get cat food at Target.  That's it.  Why, why, why did I think this would be OK on the way home from school??

The whiiiiiiiining!

They were starving.

They wanted to go home.

She touched me.

He hit me.

He looked at me.

She thought about touching me.

Luckily there were no major melt downs in public.  No, my sensational kids reserve their bad behavior for when it's just them and Mom.   I practically begged Caleb to jump on the trampoline when we got home.  We settled for some brushing and cuddling.

Did I mention they were using their very loud vacuum right next to Caleb when I got there to pick him up?  I get that they are in a hurry to get home, but running a vacuum right next to a child who is hypersensitive to sounds?  Really?

Sensory Processing Disorder Awareness Ribbon

I have searched the Internet and I can't find an "official" awareness ribbon. I am finding blue, purple, and orange, but blue seems to be the most popular and cited as the official color by the SPD Foundation in a third party email on a blog.

I wanted something with some more meaning than just a solid blue. I added waves to represent that SPD kids (adults) can be highly sensitive or or their sensitivity can be too low.

If you like this, please leave a comment. Feel free to share this, but please give me credit for the design.