Friday, November 15, 2013

Autism: All Heart and Innocence

Autism:  All Heart and Innocence 

This week we had a tragic event happen in our neighborhood.  Down the road from us a young lady runs a riding stable and school.  I could walk there from my house.  The barn that houses the horses is very close to the road itself.  Many times you can see the children, some very young, leading the horses out of the pasture to the riding ring next to the barn.  People tend to drive extremely fast on this road, taking into consideration that is is a residential neighborhood.  When you drive up the hill to my house from the horse barn at certain times of the day, you get blinded by the sun.  

This week I heard the sound of the local fire department sirens and could see down the road to a large assembly of emergency vehicles in the area of the barn.  I wondered if one of the horses had escaped and caused an auto accident.  It was the next day that we learned that a young lady, a riding student 15 years old, had been struck by a car. 

I explained this to my son with autism.  He listened quietly as I told him that some folks drive too fast.  That we must never go near the road.  That mom and all other drives must concentrate when they are driving and that it is a serious job. 

Today I made the daily McD's run to get Joey's french fries.  When I returned I saw him make his way to the computer printer in his bedroom.  He extracted a piece of printer paper and brought it to the kitchen. 
"I want to make a card for the girl that got hit by the car", he announced.  

Now, my son loves to make cards for family members around the holidays.  When he was home sick the entire school term last year, he wrote letters and cards to his best friend in class.  The content was usually something related to "Blues Clues".  

I offered to help him with the message for this card:

"Get Well Soon"

Emily, I hope you are riding your horse soon!"
Love, Joey XOXOXO

I am soooo proud of him.  To think of this on his own, to empathize with someone who is in pain, to offer to do something for someone else, is monumental for him.

We made the card.  I inserted a little note with a picture of Joey for the parents to read and understand why it is such a basic piece of artwork.  

I hope the understand that for him it was a great accomplishment and that he hopes that their little girl gets better.  

Another example that our kids are truly full of heart and innocence.  Something to be applauded and copied. 

Friday, November 8, 2013


Autism:  30 Days of Thankful

So I gather there is a challenge going on during this month of November on Facebook wherein on each of the 30 days of this month of Thanksgiving, Facebook users must post each day, a thing they are thankful for. 

I thought I'd put a little extra twist on this and try to come up with 30 things I am thankful for with regard to my son's autism.  As I start here I wonder if I can come up with 30 as I, personally, do not view his autism as a "blessing" as some parents do.  I view it as a curse, a nightmare that has robbed him of his childhood and all the experiences connected with it.  I view it as a burden that he must carry for the rest of his life, a constant struggle to cope and understand that the regular person has no comprehension of.  

Therefore I challenge myself to find 30 things about my son's autism that I should be thankful for. 

1.  I'm thankful that I have the strength to support my son.
2.  I'm thankful that we currently have a superb autism class teacher.
3.  I'm thankful that there are professionals with the patience to
work in this field. 
4.  I'm thankful for the other moms and dads I have met fighting the same fight who offer help to me whenever I need it. 
5.  I'm thankful for my son's ability to speak, although in cryptic 
terms somehow, as there are children who cannot. 
6.  I'm thankful that my son can use the bathroom by himself, freeing me from diapers as there are children and adults who still need them. 
7.  I'm thankful that my son can brush his own teeth. 
8.  I'm thankful that my son can feed himself, although a severely limited diet, but nonetheless he feeds himself. 
9.  I'm thankful for the people who tell me from time to time, 
"you're doing a great job". 
10.  I'm thankful that my son has found a buddy in our Yellow Labrador Retriever and is capable of expressing concern about him. 
11.  I'm thankful for my sister in law who is caring enough to come running over to my house when a meltdown is something I cannot control and am worried about.  A fresh pair of hands is appreciated. 
12.   I'm thankful that my son can attend a regular school and get some exposure to the neurotypical kids in some situations. 
13.  I'm thankful for the new gym teacher who is a drill sergeant with the regular ed kids, but a gentle kind soul with our adaptive PE kids. 
14.  I'm thankful for people who do not criticize but are open to learning more about autism. 
15.  I'm thankful when a meltdown onlooker sticks up for my child amidst criticism. 
16.  I'm thankful that a class aide would actually seek out a job placement working specifically with my son. 
17.  I'm thankful that my son sleeps through the night and does not have any sleep issues like some folks with autism. 
18.  I'm thankful for our local Autism Society who provides support 
and events and activities for our kids. 
19.  I'm thankful for our local therapeutic riding center, CATRA which provides our kids with horseback riding opportunities. 
20.  I'm thankful for the Special Olympics Area M, Cent. PA who gave my son the chance to win the 50 yard dash. 
21.  I'm thankful that I've made some adult friends with autism who enjoy writing as I do and I thank them for sharing their personal experiences with us all. 
22.  I'm thankful when my son participates in an event and comes home and says "That was fun!".
23.  I'm thankful that I was able to create a small book for our kids with autism called "Curvy Herbie and Straight Nate" and that it is used by teachers, parents and professionals in the field and that it is able to help kids be more flexible.  It was a labor of love. 
24.  I'm thankful that my son is finally working on being able to express his emotions.  A long way to go but a start. 
25.  I'm thankful that this autism journey has shown me to be thankful for the little things we have and share, not clothing, not cars, not prestigious colleges, not soccer teams, just being needed and loved. 
26.  I'm thankful that as bad as my days with autism are I know that there are loving parents who deal with much worse as they care for their children. 
27.  I'm thankful for my mom who worked so hard to bring up two children by herself and by doing so taught me to never give up, it never hurts to ask and to believe in your own abilities.  It carries me every day. 
28.  I'm thankful that my son is sitting here in the kitchen singing.
29.  I'm thankful that I've had the opportunity to meet a group of people who honestly have no prejudice and treat people as they are treated.  They harbor no preconceived notions or biases about people regardless of race, color, creed or physical capabilities. 
30  I'm thankful that at bedtime, my son says, without being asked, 
"I Love you, you are my best friend". 

I'm thankful I made it to No. 30 but I realized it wasn't that difficult.  

Monday, November 4, 2013

Autism: Bad Luck or No Luck At All

Autism:  Bad Luck or No Luck At All

Ok so this week was Halloween and Trick or Treat.  My son missed this event last year due to horrible health issues that caused him to lose his sight.

So this year, we had to tough it out, autism or not.  Vision or not. We were not missing out on another Halloween.  Each year my son dictates what costumes we, as a team, will wear.  They are usually costumes that are not readily available on the retail market.  Mom ends up making them to the best of my ability.  This year we were Spike and Tyke, Dad and Son Bulldogs from "Tom and Jerry".  I used grey sweatpants and hoodies.  I made ears and mounted them to headbands.

My son made a new friend this past week at school,a little girl that also attends his school who was born without sight.  Her Mom very nicely invited us to come to their house for Trick or Treat.
Since we don't get many social invitations I wanted to take advantage of this offer.  She warned me they usually take a group picture then head out down the street.

We arrived on time amazingly and there were a lot of kids and adults.  The little girl greeted Joey and they announced they were going to take the group picture.  Our host came over and asked if this would bother my son.  I said "No, as long as you don't say the traditional "Say cheese" phrase.  He hates that and it will drive him to meltdown.  "Ok, we won't" she said.  Instead we got a very loud "SMILE".  This did not go over well with my son.  He stuck his fingers in his ears and was starting to become aggitated.  The photographer's cell phone flash was not working so we had to endure this about 3 times.  Argggh.

Ok, he kept it together.  All the kids started to scatter and head up the street to start Trick or Treating.  Off to the left a blasting chorus erupts with "HAPPY BIRTHDAY TO YOU, HAPPY BIRTHDAY TO YOU".
Now I'm thinking "why doesn't someone just shoot me?".  We are two for two now with the photo op and the most dreaded meltdown producer in our household "HAPPY BIRTHDAY TO YOU".  Can I not get a break here this evening?  I quickly turned his attention to the fact that the other kids were way ahead of us and we needed to go in the opposite direction of the singing.  THANK GOD IT WORKED AND OFF WE WENT.

We made our way down the street and around the corner in this neighborhood I know nothing about.  The group had long since passed us and proceeded onward.  We were on our own.

As we walked I'm vocally telling him about the bumps in the sidewalk and the cracks in the pavement so he doesnt stumble.  He has a hold of my arm and folks are probably wondering why I'm hanging onto a 15 year old kid.  At some houses I had to offer explanation as to his lack of sight when he did not readily reach into the candy bowl presented in front of him.  Most folks were nice and happy to help us.  We stopped to pet a doggy dressed in a super hero costume.  At one house that had a mega sized set of steps I asked one child to bring a piece of candy down for my son which he did.  Nice kid.

As we turned to try to make our way back to the car a lady stopped us at the intersection. This is honestly one of the very few times in my life I have been "Speechless".  I know if video taped it would have shown my mouth actually hanging open, no speech being produced.  This was brought about by her comment, out of nowhere:

"Oh, where is the other Three Blind Mice?"
"Uhhh, Excuse me?"  I replied
"Well there are two of you, so where is the other mouse of the three blind mice?"
Ok, at this point I'm frozen.  Thoughts are racing through my head. She could not possibly be that rude, I think.  Is she aware of the fact that our friend who invited us, is also not sighted.  Is she referring to her as the "Third" mouse?  Is she confusing our costumes to be that of "mice" and not "dogs"?  I want to grab her by the collar and scream " he is blind you stupid idiot".  But I didnt want to upset my son.

Calmly I replied :"We are supposed to be dogs, not mice".  We walked away.  I thinking my god, what other autism and social obstacles can we encounter tonite?  I thinking, my poor son, has held it together so well tonite despite the triggers he loathes the most.

After returning home, he said to me "I like the old trick or treat better" referring to the old neighborhood we usually frequent.  But I was proud of him for venturing into new territory and coming out the winner.

Friday, November 1, 2013

Autism: What Is It Like to Be an Autism Parent: The Blog Challenge

Autism: Being an Autism Mom/The Blog Challenge
I have an adult friend on the autism spectrum. He has recently expanded on his enjoyment of writing through, I hope, my prodding him to do so, and to use this medium to educate the world about autism as he lives it.
I challenged him to write a blog the other day, which he did and then, challenged me back. His request of me write: What is it like to be a parent of a child with autism? So Tom, this blog's for you.
What is it like to be the parent of a child with autism?
Best way to attack this is with a series of "one liners". In no particular order, neither ranked by positive or negative just as they flow from my frazzled brain.
Being a parent of a child on the spectrum means:
You haven't gone out to dinner in 15 years.
You can recite videos as well as your child because he scripts them so much.
You understand cryptic language such as "fireworks poops"
You haven't watched a full tv show in 15 years.
You read through every line of your child's IEP to make sure it includes what he needs.
You begin to talk in acronyms: IEP, BSC, TSS, ASD, PDD,
You are thankful that your child is able to use the bathroom finally, whenever (finally) is because some children cannot.
For you there is no such thing as just "jumping in the car and going to the mall".
You know that all tags must be removed from clothing.
You know that socks cannot be lumpy.
You want to grab that onlooker that during a meltdown comments "If that were my kid ......"
You want to hug the cashier that sticks up for your child during a meltdown by telling the onlooker to shut up.
Almost all your friends are parents of kids with autism.
You end up educating everyone you talk with about autism not on purpose just because it's your life.
You don't mind that your child calls you "parent" instead of mom.
You are thrilled when another child in school inquires about your child when they are absent.
Finding and having a good school teacher is better than winning the lottery.

You have found more patience and strength within yourself than you ever knew you had.