Glass Houses.

"Why was this child left without supervision?"
"Who would take their eyes off of their child if their child had autism?"
"Where was the mother when this happened?"

Last week the world lost a beautiful soul, Mikaela Lynch.  A nine-year-old who left her yard to go find some water.

Yesterday we lost an 8 year-old nonverbal child with autism in Florida.

And following each of these reports is the finger-pointing.

Just what parents need with tragedy like this.

I consider myself a good Mom.  I actually think I'm pretty great at what I do.  I know my son is a wanderer and has no concept of danger.  I've had window guards installed in windows at my home, I've put stop signs at the doors, I have bought temporary tattoos that have my contact info on them to put on him when we go to busy events.  I have worked relentlessly to teach him to swim since like many others on the spectrum he is a magnet to water.  I have drilled hours and hours of road safety- looking both ways, holding hands, not going past specific points in yards, etc., etc.

But my child has escaped.

A couple times.

Once at a campground I lost him.  Thank god, I found him.  He had decided to go to the bathroom and because he doesn't always have the necessary tools to communicate that to me he just left when my back was turned.

Once in a parking lot near a beach he took off to run to the water.  He was actually hit by a car backing out. It was just a tap, not even enough to knock him over.  Thank the universe!  But it was enough to make me keep a death grip on him for the rest of the day.  My heart was beating through my shirt for the next 24 hours.

Every once in a while, while we are all running around trying to get ready for school and work I'll notice that the front door is open.  And there is Brian standing in the middle of the road flapping his hands staring up at the airplanes in the sky.

I know how lucky I am that my child has been safe and sound each time.

Life with a child on the spectrum is 24/7.  It doesn't stop.  We can do ABA over and over and over again to teach them safety but it doesn't guarantee anything.  Life is still going on around us all the time.  We can't be every where at once.  We have other children, other requirements expected of us.  Brian is my priority by all means, but I'm not Wonder Woman.

So when a tragedy hits a family like Owen or Mikaela we need to send out love and support.  Enough with the judgment and finger-pointing.  Glass houses people.  Glass houses.

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For more information on the dangers of wandering and autism visit: http://nationalautismassociation.org/resources/autism-safety-facts/

To get yourself a FREE safety kit for your child on the spectrum (pay it forward if you can) visit: http://nationalautismassociation.org/big-red-safety-box/

And lastly contact your local police department and see if they have a program in place for identifying children on the spectrum.  Some will keep reports with pictures on our children with where they may go if they wandered, what their behaviors are, etc.

The Best of Eight

Today we'll be having the big party to celebrate my little man turning nine.

In the meantime let's look at the past year.

A look through pictures.

Covering his ears for the birthday song back on his 8th birthday.

Sleeping and holding hands with his brother.  This is a very common occurrence.

Lounging around with Colin.

Absolutely no fear at Grammie's pool.  This is the year he really learned how to swim.

We moved int our new home and many laughs have occurred in the big tub.

Looking like he wants to soar away at Acadia National Park.

Quite possibly my all-time favorite pic of Brian.

Who could forget this first day of school picture.  Brian is leaning in to give his big brother a kiss.

Brian overcame his fear of feeding the animals at York Zoo.

Making a scarecrow with Corbin.

Brian really got into the whole Santa thing this year.

Brian survived the biggest blizzard from his lifetime- Nemo!

Not feeling too sad about all the snow.

He really got into Spirit Week this year.  Whatever Corbin did, he had to do too!

Brian spent as much time as he could loving on his youngest cousin, Lindelle.  He just loves babies!

Brian participated in his seventh local Walk for Autism event!

A picture from his NINTH birthday with his Mama.

It was a great year!

Hopes & Dreams

Just finished a 7:30 AM IEP meeting.

It wasn't a bad one, especially compared to the drama we have been through the past few years.  We have a  really good IEP in place now, so as long as they keep sticking to it I feel secure in Brian's placement.

So why did I break out in tears when the interim special education director asked me the question, "What are your hopes and dreams for Brian next year?"

I'm not sure I've ever cried in an IEP meeting.  Even when I sat there for three hours with a lawyer arguing with their lawyer.  Even when a speech therapist tried to blame my son's summer regression on me.  Even when I was told my son was borderline MR.  I didn't cry at those meetings.  I bawled my eyes out after in private.

Today he asked me that question and I tried to form an answer.  A lump formed in my throat.  My eyes watered up.  I couldn't get the words out.  I apologized for crying.

It's because the 7:30 AM IEP meeting followed our birthday breakfast for my little boy.  He turned nine today.

It was such a sweet little birthday celebration.  Bacon, eggs, orange juice, strawberries, GFCFSF banana-nut-chocolate muffins- all of his favorite foods.  He tried to sneak a peek into his birthday present just like a typical child.  We sang "Happy Birthday" to him and he just sat in my lap and smiled.  He didn't cover his ears when we sang to him!  He blew out his candles and opened up the one gift, as is tradition in our family.  He looked around for more and I reassured there would be a ton more at his birthday party.  He sat at the table and ate breakfast with us.  He repeated, "Birthday!".  He can answer how old he is when I show him nine fingers.  He knows we're going to have a jungle-themed party on Saturday and can't stop saying, "The animals are in trouble!".  Diego beat out Thomas this year, can you believe it?

Birthdays are bittersweet for me.  They are a day of celebration because I am so lucky to have this ray of light in my life.  I love that little boy with every ounce of my being.  A smile from him just makes everything okay.  There is nothing better than having him lie in my arms and smile at me and tap my cheeks and say "Mom".  He is the best cuddler in the world.  I just can't put into words what that little boy means to me.

But his birthday also reminds me of how far behind his peers he is.  It reminds me that there are nine more years until he is a legal adult and I'll most likely be going through the process to became his guardian for the rest of his life.

When someone asks me on his birthday what my hopes and dreams are for his future I think back to his initial diagnosis and just KNOWING that I would get him talking.  I would make it so he could answer questions and tell me what he needs.  I would make him feel better in his body so he wouldn't want to hurt himself anymore.  I would make it so his life wouldn't be so difficult for him.  I would make it so he wouldn't need to tap people to feel safe or have all the doors closed before he can breathe.   And that just hasn't happened.  He's made progress for sure, but he is not where I hoped he would be.  

People say that autism is a blessing.  My child wouldn't have chosen autism for himself if he had had the choice.  Brian is a blessing.  He is the most incredible blessing I could have ever hoped for.  Autism is not.

So my final answer to the question after choking down the lump in my throat?  "I want him to continue to progress, I don't want you guys to give up on him.  I know there is so much potential in there and I need to know his team sees that too."

It's the same answer I had almost seven years ago after that first evaluation.

Moral of the story, never schedule an IEP on my children's birthdays again.

Let Me Be Brave in the Attempt

Sometimes I come across angry with my writing about autism, especially when I have to fight for him to get what I perceive as a basic education.  Sometimes I seem really sad with regressions and seeing my son try to injure himself.

I hope I don't paint it like that's how it always is.  Life with autism is hard, no doubt.

But we're happy.  We have a roof over our heads, we have our basic needs met, we have laughter, we have love, we have each other.  Our days are filled with a crazy amount of cuddling, giggling, running around the house like crazy people. I like to think that we may be one of the happiest, silliest families you ever meet.

Nothing paints how happy my family is then these pictures from the Special Olympics track meet this past Friday.  There is nothing like a day with no judgments, acceptance of all, and compassion like no other to make us all feel at peace.  To make us all feel like we can kick off our shoes and just breathe.

The Special Olympics athlete oath is "Let me win, but if I cannot win, let me be brave in the attempt".  I love it.  Not only does it sum up the event, but it sums up our jouney with autism as well.

Try not to smile along with my little man...

Brian is the only athlete from his school, so his brother volunteered to help with the banner for the parade.

Brian really really loves Special Olympics day!

Brian's biggest fan

Getting his second place ribbon for the 100M dash!

I am a very proud Mama!

Ending the 50M with a smile, despite taking a fall at the beginning of the race.

Ready for his 4th place ribbon for the 50M dash.

So happy.

Raw.

Those are the perfect imprints of my child's teeth on his hand. 

This was the result of him feeling frustrated about not knowing what was next in the morning routine.

This is why I will not be quiet and smile and say that autism is a blessing.

This is why I say that I would be first in line if they ever found a way to rid my child of his autism.

He is not his autism.  

Autism makes him hurt himself.

No mother should have to see their child in this sort of pain.

No child should feel so lost and out of control and unable to communicate that they succumb to this.

As of tomorrow, Autism Awareness Month is over.  

But for families like ours it's just on repeat every month of the year.

Gluten Strikes Again

Things have been really good.  So good that Brian has attended things like Colin's gig and a hockey game with very little meltdown behavior.

In fact he danced the night away at Colin's gig.

And his brother and cousin used the noise-cancelling headphones way more than he needed to at the hockey game.

He actually stayed in his seat for the entirety of the hockey game, rather than taking me on tours of every hallway and room in the arena as he has done in past years.

Things have been going really good.

So when they go bad, you notice.

It started when we had to leave the house around 11 this morning.  I had told him several times we were leaving.  However, he started screaming the second I handed him clothes to put on.

But it got really bad when he had to turn off the television.  He's been really into watching his shows by streaming them through the PS3.  However, he hasn't figured out how to turn off the PS3 properly.  When I tried to stop his routine to show him he threw himself on the floor and screamed like I was hurting him.  Then when I insisted the controller be plugged in so it could charge he ran across the room and threw himself into the wall and then proceeded to bite his wrists.

I got him out the door eventually, still in tears.

We got to our destination, an outdoor park where I was meeting friends to discuss a fundraiser we are doing for our dear friend who just found out she has cancer AGAIN (side note: she needs all the support she can, she's only 32 and this is her second round, no insurance as she's a self-employed massage therapist- you can help here!).  I had brought their kites for them to use and that seemed to calm him and I even got a few smiles.

Sadly, it was short-lived.  He started to drink off a friend's sippy cup when I inquired if it was okay my friend said, "Of course, it's only apple juice."  I ran across the park to take it away.  No apples for my boy.  That set off another meltdown.  Not a self-injurious one, thankfully.  But one that required needing to be held in my arms until the tears subsided.

We left the meeting earlier than planned as he sequestered himself to the backseat of my car soon after the apple juice incident.  The rest of the afternoon was met with tears as I tried to work in the yard and he wanted nothing more than to run, scream, and flap in the middle of the street.  Tears, throwing himself against surfaces, and just general sadness. When he wasn't sad he would go immediately to a manic stage where he would scream, laugh, jump on me, and flap his hands against my cheeks.

I finally gave in and succumbed to allowing him to zone out to television for the rest of the afternoon, where he watched the same fifteen seconds of three different shows over and over again.

At 6:00 he was passed out.  I can't remember the last time he fell asleep before 8.

The kicker to this whole story is this.....


This morning when Corbin went to grab the only leftover piece of his pizza from the night before he realized it was missing.  After checking with Colin that he wasn't the culprit, we all realized that Brian had eaten an entire slice of glutenfied pizza.  You can all say what you wanna say about diet therapy.  But today was the worst day we have had in months and the only day he had gluten.

Touching Strangers

It was surprisingly quiet in the grocery store for a Sunday afternoon.  Generally I despise and loathe those big Sunday grocery trips so I was pleasantly surprised at the peacefulness.

I was able to let Brian's invisible tether grow a little and I felt my own grip on the handle of the cart loosen.

Brian was dancing around the aisles as he usually does, trying to tap shelves or make sure his toes touch each square on the floor.

At one point an older woman giggled as they did a dance together as she tried to reach the pepperoni behind him.

Yes, she giggled.  I laughed back and said, "He loves to dance in the grocery store".  She smiled at him and went along her way.

A minute later he jumped across the aisle and placed his hands on a two-year-old's cheeks while giving her his biggest smile.

I ran across the aisle, hoping she wouldn't burst out in tears from this big boy that appeared out of nowhere and was touching her.

Her grandparents looked quizzically at me as I loudly asked him, "Did you want to say hi to the little girl?"

I held him there, yet keeping a safe distance so he wouldn't squeeze her cheeks again, and said, "You can say hi to her."  He jumped, flapped, and said "Hi baby!!".

I looked up at the grandparents and quickly said, "I'm so sorry.  He has autism and doesn't understand the social graces that come easily to the rest of us.  And he just loves 'babies'."

At this point I was making it into a big scene, using my loud teacher-voice.  Several people had turned and watched the scene.

But everyone smiled.  The grandparents just nodded and urged their granddaughter to say "Hi" back to him (she still looked like she was shell-shocked, hopefully that wore off).  And we went off, with him smiling and repeating "baby, baby, baby" over and over again.

The situation made me smile.  No, he shouldn't be going around squeezing toddler's cheeks but everyone was so kind and accepting that it gave me hope.

Don't worry, I did give him the job of pushing the cart to avoid any more instances of touching strangers.