Welcome to my first attempt at a blog in years. After writing “a day in the life of Leo” and having a very honest conversation with a girlfriend who also is going through learning about her sons Autism diagnosis, therapy, potty troubles, food weirdness, general inability to “go through daily motions” I realized I need a place to do just that. A place to write out the good, the bad and the ugly. A place to share victories and tears, a place that I can document our journey with Leo and Max. So here we go.
A little background.
Leo, now 3 1/2 years old was my first pregnancy, our first baby together, born on his due date-weighing in at 9lbs 7oz. He has been my tank from day one. Passed every screening given to him, seemed right on track. Growing and smiling and laughing. I went back to work full time when Leo was almost 2. We enrolled him at a wonderful daycare that he immediately fell in love with. One of his teachers, after a few months voiced a concern to me about his hearing, or rather a lack there of. After months of waiting to see specialists we discovered that Leo couldn’t hear and because of not being able to hear he was very speech delayed. I had noticed a few other things he was and was not doing and felt like I needed to have him evaluated.
Thanks to a girlfriend that had gone through exactly what I was going through- having people question what you think is “wrong” with your child, being told its all in your head- she pointed me to our local regional center for an evaluation. After an evaluation, an initial diagnosis of “autism like characteristics” because they don’t diagnose until age 3, a short stint in speech therapy and a set of ear tubes later he was diagnosed by both the school district and the regional center as on spectrum.
In the middle of all of this, we welcomed our Max into the world. He decided to grow breech, have his head jammed in my ribs. And all the time I thought he was head butting my pelvis, his butt was bouncing on it. But that’s how he is growing, moving 100 miles an hour, climbing, dancing, smiling and laughing. He is amazing, he is so darn cute, he and Leo couldn’t be more different. At 18 months old Max can run and throw, he has words and eats just about anything. He can stack blocks, he can hold a crayon. He is right where all of the books and charts say he should be. He is my “normal” child, my on target child, the child who can play with friends, who can already communicate.
So here I am, being a stay at home, room, therapy mom. Trying to understand a diagnosis that no one quite understands. All the while trying to keep my fully functioning child learning and growing.
I AM EXHAUSTED.
And I get mad.
How can a child born to my very wordy husband and myself not have words.
How can there be so many children on the Autism spectrum and there still be no answers as to why
Why did the process to get help take so long
How am I going to explain the differences in Leo and Max to Leo when one day he asks.
How am I going to keep kids from making fun of him, from picking on him (I’m pretty sure Max will lay a beat down if needed)
How am I going too make sure Leo knows how amazing he is.
I don’t have a clue. But as a family we are going to learn and grow together.
My hope here is to vent a little, share lots of our experiences with school, therapies and life, and hopefully reach a few people that are going through what we are.
You’re not alone, even when it feels like you are.