Behind Bathroom Doors

Brian has been getting into a lot of mischief in the bathroom lately.  It's a relatively new thing.

The first time I received a text from Colin shortly after we had all left the home for school and work.  It read something like,

"I hope you weren't a fan of your orange nail polish."

Yes, my child had dumped orange nail polish all over the sinks in the bathroom.  I was oblivious to it because up until then he never did anything in the bathroom other than use the toilet.  

The next time it was a bottle of foundation all over one of the bath mats.

This morning I was doing the morning routine and noticed the door was closed to the bathroom and there were giggles inside.

I ran in to find this.

He looked at me with a smile and said, "Swimming animals!"

Actually he didn't just say it, he yelled it at me with determination.  That is what he does when he has figured out a new phrase.  He yells it at us with this force as I imagine his connections in his brain are trying to make it ingrained so he doesn't lose it again.

And I stayed in the bathroom with him, supervising that the sink didn't overflow, but encouraging the pretend play and the new language.

I can't say no to messy play when I see that it's spurring new learning.  Splash away jungle animals!

Turn Around

We were outside enjoying the sun and building a new fence when Brian said, "Fly".

I hate to admit this but first I blew it off like it was one of his scripts.  He's talking a lot these days!  However, it's 90% in scripts, just repeating movie lines over and over and over again.  He has a lot of flying scripts from Buzz Lightyear and Fly Me to the Moon.

However, he looked right into my eyes and repeated it.

I asked him if he wanted to fly and he responded, "Yuh!".

I picked him up quickly right over my head and put him back down on the ground.

He looked puzzled and I could tell that wasn't exactly what he wanted.

He looked at me, scrunched up his face as he thought and then said, "Turn Around".

Turn Around?!?!?  One, a phrase I've never heard him say.  Two, he was able to say it very clearly even around those obstacles of autism and apraxia.  Three, he TOLD me what he WANTED.  Something novel, something fun that he just thought of, something we haven't practiced for months and months for him to learn.

I could only spin him around a few times before he became too heavy.  But he seemed content.

And I was more than content as I walked around with a grin for hours after as I kept replaying those two little words over and over again in my head.

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.