Back To School

How are you (or did you) prepare for back to school?

My oldest is going into 4th grade this year.  This will be the first year that I am not sending a letter explaining his SPD for two reasons: we did not have an SPD-related issue last year and his teacher will be less than receptive. Yeah, we got that teacher.  

My middle child is entering K this year.  Last year, he was in preschool four 1/2 days a week.  He had an IEP for behavioral problems, but he was very well behaved.  (He held it together and melted at home.  Lucky me!)  His teacher is from a different elementary in the district, so I don't know anything about her.  I am going to write a letter introducing her to his SPD and what we can do to help him.  I'm offering to help whenever I can, and possibly brush him at lunch time.

Luckily, our school is very helpful and willing to make small accommodations.  Every time there has been a problem it was easily resolved with an email.  

Do you write letters to the teacher explaining your child's special needs?  Do you send it at the beginning of the year, or do you want until the teacher can meet your child?

(If you see this, Blogger has decided to let me post again.  How frustrating!)

My Letter To The DSM5 2

This letter is for Caleb.  I could have written a novel, and I feel like I left out so much.  I hope my frustrations are clear.


I am a parent of a child with Sensory Processing Disorder.  My middle child, Caleb, is a sensory seeker and has regulation problems.  He is now 5 and receives occupational therapy daily at home and once a week with an occupational therapist.

Caleb has never been able to regulate himself.  He could not get himself to sleep and would wake every 90 minutes to 2 hours during the night until he was 4 years old.  He could not transition from sleep to waking without screaming and crying for an hour.

He starting having behavioral problems when he was about 18 months old.  He would hit, bite, and kick his siblings, and often do the same to me.  He refused to listen to any directions from parents or other adults.  He had no safety awareness and would unlock doors to get outside.  Door alarms and multiple locks could not deter him when he wanted to get out.

He was constantly craving high intensity activities.  He would swing from the ceiling fan, jump off the back of the couch, or jump from the top of the stairs if left alone for more than 15 seconds.  As you can imagine, parenting a child seeking this level of input was not easy.

It was impossible to take him anywhere.  Even going outside to play filled me with anxiety that he would run off and be hit by a car.  Going to the store meant constant tantrums.  We could not allow anyone to watch him, because he needed to be watched every single second or he could be seriously hurt.

By now, our pediatrician was a little more familiar with SPD because of my older son.  I scheduled an appointment with an occupational therapist when Caleb was four years old.  He was diagnosed with SPD.  He is a sensory seeker because his internal "motor" is running too slow.  He craves touch and proprioceptive input. He needs high intensity input that I am unable to provide for him at home.

After starting therapy, Caleb stopped seeking input from unsafe sources.  He has all but stopped his hitting and biting his siblings.  He is now a very sweet, calm little boy and he's a pleasure to be around.  We are now able to enroll him in preschool and allow his grandparents to watch him without worrying that he will get hurt.

Caleb lives in a world where the lights are too bright, every day sounds are deafeningly loud, and smells are overwhelming.  Yet, he craves the sensation of touch and needs high levels of proprioceptive input to feel calm.  Without treatment, I fear he will not be able to perform in a school setting because he will be constantly seeking stimulation.  It will interfere with his ability to learn and he will not be able to participate in the classroom.

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.

My Favorite Therapy Photo

Last Halloween, Caleb's therapy center let the kids come in costume for the whole week.  Caleb, of course, chose Spidey because he eats, lives, and breathes superheroes, especially Spiderman.  

He didn't start in the net like this, but he kept wanting to get more wrapped up.  Everyone in the office was coming to see Spidey in the net haha

Oh, that's not my reflection in the mirror taking the photo.  So don't be hatin, I'm not anywhere near that thin.  Not even close.

Blog Header

So, yeah.  I need a header.  I am so uninspired when it comes to this.  I'm still trying to find a background that I love as well.  I feel like once I make the header I'll be stuck with one blog design and I like to change things.

Ok, things to do.  Header.  Next.  Promise.

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.