© 2012 megs Walk with Luke

A whole new world where Autism Speaks

I look back at the very few blog entires we’ve done. A part of me wants to hang my head in shame for letting the blog go so dark and silent and stare at all the entries that are still in draft mode waiting to be published. I do feel guilty but then a part of me tells me it’s okay – we’ve been busy. It’s been six months since Luke’s diagnosis and everyday it seems there is always a struggle or challenge for us. As new parents we sometimes can’t see the lines between Autism and Luke just being a 2 year old. Like the other day he learned to open doors and almost literally walk out the front door. We now have those annoying door knob covers on all knobs that lead anywhere out of the house or the bathroom (he likes to play with water- a lot. Toilet has water). This is typical 2 year old behavior.

Luke also doesn’t listen. You may think “What 2 year old does listen?” but Luke doesn’t listen 98% of the time. He does not answer when you call him so we need to make sure where he is 100% of the time.

Constant vigilance.

We lost him once at a baby shower at a church for 5 minutes. He slipped away from half a dozen other adults who were suppose to help look after him and walked out two set of open doors and on to the grounds of an unfamiliar church ( I was hosting and checking on him from time to time). I ran screaming his name down a hall way and into dark rooms looking for him knowing very well he was not going to answer and at the same time thinking “oh my God I’ve lost my non verbal Autistic child!”. All those years listening to the news of some Autistic child missing  came flooding back to me at once ( I had no idea what Autism was back then). He could be hurt, someone could have taken him!  I walked out the hall way and saw the gate that lead to the parking lot and it was swung wide open. (The parking lot lead to a street that was next to a freeway…)  My heart sank and my mind raced to all sorts of horrible scenarios.

As I was about to race out the gate Mitch called me and I turned around. There was Luke in his daddy’s arms being carried to me. He was safe and he was smiling. I cried so hard as Mitch placed him in my arms. He had wandered off to the play ground that was behind the building. His Uncle had taken him there earlier so he decided he wanted to go back and play.

This happened 5 months ago but I still get very upset when I think about it. But, we have come a long way from him not speaking.

He can now say “mama” or “daddy”. He has over 50 words in his vocabulary (although he chooses to only use about 10 most of the time. Usually that is “we gotta go” and “I have the power” from He-man).  What hasn’t change is the constant vigilance. I can not set him down and expect him to stay in one place. This means I need to be extra careful going in and out of the car (I carry him from the car seat to the house or to a stroller and vice versa). He hates shopping carts so any shopping experience is either in a stroller or lots of fighting and struggling to keep him in a cart. We are working on holding hands and walking but that’s not going so well.

What is going so well are his therapies. As I mention before Luke has three Therapists that he sees every week. One is his ABA Therapist who works with him three hours a day five days a week with Early Intervention. He has a speech therapist and an Occupational Therapist (who helps him with his Sensory processing). Without these therapies we would not be where we are today. And we wouldn’t have any services or therapies or knowledge of Autism without the people and the organizations out there who have pioneered the way in research.

This year is the first year of our journey with Autism so we chose to fund raise and participate with Autism Speaks. You can learn more about Autism Speaks and our event here. This Saturday we will be at the Walk Now for Autism Speaks event in San Jose at Kelley Park to help raise Awareness of Autism. What we would love for others to do more important than just donating is to truly understand what Autism is (as much as you can since it is a wide spectrum) and what it means to a family. How you can offer support and encouragement to someone you know affected by Autism.

I wish I can say more but my time is up (says a very upset and mad Luke). I hope this post has given just an idea of how Autism affects us ( this is just a scratch on the surface of our world).

So if you’re not busy tomorrow morning come on over to Kelley Park and say hi and cheer on our team, Luke’s SkyWalkers. We will be the ones with the light sabers.

My Best,

Megs

 

P.S. As someone once said Autism isn’t just a spectrum but a wide variety of Spectrums. This is  the journey that we are on and it certainly is not the same as someone else’s so if you disagree with what I have to say please remember this is our spectrum and our experiences.

 

 

 

 

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