Asperger's: To Tell or Not to Tell

After you get an Asperger's diagnosis for your child, you have to decide how and when to tell your child.  After that, you must decide who else to tell.  Of course, telling his teacher is usually a good idea, and most family and close friends should know.  But should you tell everyone else?  Should you tell people who may not be familiar with Asperger's or autism?

We aren't shy about my son's diagnosis.  We moved to a new area, and since he's been wearing the label for a few years, it just doesn't come up in conversation like it used to.  This is also a rural area where there are many stereotypes about autism.

Autism here means nonverbal or Rain Man.

Asperger's means brainiac who talks like a little professor.

People don't see the meltdowns and social problems associated with Asperger's, so they don't get it.

My kids were invited to vacation bible school at a new church.  We only knew one family, so no one knew about his diagnosis.  I did put it on his medical form because if there had been an accident or injury, the medical staff needed to know that in order to treat him.  I also made the decision that I would stay for the entire duration of VBS just in case.

My son doesn't like to talk to strangers because it is so uncomfortable for him.  Getting him to stand up in front of a crowd is next to impossible.

On the last night of VBS, the kids had a program for the parents.  Since the leader had no idea about his Asperger's or anxiety, he expected my son to get up there and speak his part.

He did it!

Since he was expected to be typical, he behaved as a typical child.

He started stimming, and I knew he was nervous.

But he did it!

Afterwards, I told the leader what an accomplishment that was, and I was so happy that he got him to stand up there and talk.

This is one time I am glad I didn't tell anyone about his diagnosis.  My son got pushed out of his comfort zone.

And he did it!

SPD Awareness Bracelets

SPD Connect is ordering more SPD Awareness bracelets.  You can preorder from them here.

They are orange and made from medical grade silicon, so they are safe for our little sensory seekers to chew on!

I am not affiliated with SPD Connect; I just like these bracelets!  I ordered 4 of them last year, and they have held up great!  My SPD boys love wearing them, and I have one for myself too.

I don't know how long the preorder lasts, so hurry if you want to be sure you'll get one.  I'm pretty sure they sold out the last time I ordered.

Chewy Jewelry and Toys for Sensory Seekers

One of my boys is a sensory seeker.  He chews on everything.  In school, he chews on his shirt or his pencil.  At home, he chews on small toys, pennies, and basically anything he can put in his mouth.

Since I can't get him to stop chewing, nor do I want to since that is how he regulates, I wanted to give him safe things to chew on.  I got him food safe tubing to chew on.  It is sturdy enough to chew on, and it is safe to put in his mouth.  This should not be used by little ones who can't tell you when there is a tear.  Do not leave a child unattended with this tubing.  I insect the tubing every time I give it to him to make sure it is still safe.

At school, he can't have tubing to chew on.  He doesn't like to self-regulate at school, so I got him a few things to help his day go a little easier and no one knows that he is seeking sensory input.



I love this necklace because he can wear a different design every day.  The lanyard breaks away easily so he won't get choked.




These are awesome because no one knows they are for his SPD.  They look like regular erasers, but he can chew on them all he wants.



These have knobs on them, so they provide more input than other styles.  My son uses these at home, and they are easy for little ones to hold.

I Love Your Asperger's

Yesterday, the boy and I were leaving his appointment, and I talked to the counselor for a few minutes. We were discussing his progress, and she said "the proof is in the pudding."

As we walked out, the boy looked at me with his big, brown eyes and asked where the pudding was. I hugged him and told him how much I love his Asperger's. Of course, he still didn't quite get where-- or what-- the pudding was, but he felt a little better.

As we were driving home, I got sentimental about the impending end of elementary school. He put his arm on my shoulder and reassured me that he would be OK in intermediate school. This physical contact was a big breakthrough, and one I didn't realize was even missing until it happened.

Yes, he will be OK in intermediate school and beyond. I love him, and, yes, I love his Asperger's.

Finding Help After An Autism Spectrum Diagnosis

The latest estimate from the CDC is that 1 in 88 children will be diagnosed as on the autism spectrum.  Even in the midst of an epidemic, many parents struggle to find treatment options for their children.  When my son was given his diagnosis, I spent weeks digging through the Internet and making phone calls to find help.

Resources and treatment options vary by area, but here are some tips to get you started on your search:

• Your pediatrician.  Surprisingly, many pediatricians are not aware of many treatment options available in your area.  Most children see specialists for their autism spectrum disorder, but your pediatrician may be able to recommend a few resources.
• Your local children's hospital.  I found the local children's hospital to be my most valuable resource.  That is where I chose to have my son evaluated, because I knew they have a highly respected autism research department.  The hospital, however, is an hour away, so it is not practical for weekly therapy appointments.  Even if your children's hospital is far away from you, their neurodevelopmental pediatricians or autism specialists will be able to help you find therapy centers in your area.
• Your school district.  The school district may be responsible for helping your child receive therapy services if the child is three years old or older.  Your school psychologist or principal will be able to tell you how to start the process to get your child evaluated for services through the school.
• Early intervention.  Early intervention is available in all states, but it may be called something else in your state.  Early intervention will evaluate your child and help you find therapy centers and other resources.
• Other parents.  The biggest resource I have found to help me find therapies and treatment has been other local moms.  I was about to find online groups specific to my state, and ask them for referrals and advice.
• Child psychologist.  Some children with Autism Spectrum Disorder also have comorbid conditions, and a psychologist or psychiatrist can help with social skills training and cognitive behavioral therapy.  

Diagnosis

We have an official diagnosis.

Even though I went to the first appointment armed with occupational therapy records, school records and his personal history, I didn't want to hear it.  I don't dispute the diagnosis, but I don't like hearing the a-word.

Asperger's Disorder.

Next year, it will just be autism.  Another a-word.

Now we start the doctors appointments and therapies that come with the diagnosis.  So far, so good, but we are only in week two.

It's no wonder moms of children with autism are showing signs of post-traumatic stress disorder.

Special Needs Binder

I have quite a thick special needs binder for my oldest, but it occurred to me last night that I don't have all the specialists phone numbers in one place.  In case of an emergency, my husband or mother would never be able to guess how many specialists we have appointments with or where to even begin!

I create this simple document in Google Docs so anyone can print it.  Just click the link here and print as many as you need.  Please share the document by pointing friends to this post.

If there's something I forgot, leave a comment.

Is anyone interested in pics of my binder and how I stay organized?  The doctors and nurses love that I have everything with me at every appointment, and it helps me when I need to find something.

Testing

Testing to see if I can finally post again.  My old laptop wouldn't let me post to any of my blogs, but I was finally about to upgrade my laptop a few weeks ago.  So, hopefully, I am back into blogging!!

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.

Merry Christmas!

My sensational kids had a pretty good day.  We hit sensory overload early this afternoon, but it was to be expected.  None of us had much sleep and we skipped brushing this morning.

Merry Christmas, I hope you had a wonderful day!