A DAY IN THE LIFE WITH AUTISM

You know the saying, “If you know one autistic child, you know one autistic child.” It’s true. I have been very private about many aspects of our life because I wanted to shield my family, but I also understand that to bring true awareness, we need to educate. I can make you aware of a situation, but that doesn’t bring what is needed to help the individuals or their families. So, I HATE AUTISM AWARENESS MONTH!!!! There I said it!

JACK-JACK HAVING A TEA PARTY – HE IS BEING MRS. NESBITT FROM TOY STORY

WHY I HATE AUTISM AWARENESS MONTH

And the reason that I hate Autism Awareness month is that it focuses on the wrong things. I read an insightful little poem written by a 10-year-old with Asperger’s, and he talked about feeling lonely. If I didn’t live this life, I would think that since most 10-year-olds feel lonely there really isn’t anything wrong with that boy. At 10 I felt lonely. Heck, most people feel lonely at times. We rarely highlight the raw reality of a situation. 

The reality is my 11-year old can’t write a sentence, let alone a poem. He can write single words which is more than some autistic children can write. And he talks. He didn’t talk until he was over 4 1/2 years old. And many autistic children don’t talk at all and have limited speech as adults.

People think that Jack-Jack is high functioning, but that only means that Jack-Jack dresses himself, goes to the bathroom, and eats on his own. 

BUT, he would starve if food isn’t prepared for him. And he can’t tell time. He doesn’t comprehend time. And we work on it almost every single day. He understands direction but doesn’t understand you just can’t wander away. He can add, knows colors, and shapes, but can’t tie a shoe, doesn’t know his phone number, and doesn’t understand that the person on the other end of the phone can’t see what he is doing.

Jack-Jack looks normal, but if you spend any time with him, you soon realize that his speech is different, and his interactions are very different. He is not your typical 11-year old.

CONVERSATIONS IN THE DAY OF A LIFE WITH AUTISM:

Today we had the following conversation:

Jack-Jack: Hey Mom, Make the dying sound.

Me: (Making the worst possible sound – really not a dying sound.)

J: What does dying mean?

Me: Dying means your body is no longer alive, but your soul goes to heaven. (Really did I just say this to someone who doesn’t understand that the stove might be hot?)

J: What happens if someone die?

Me: What happens if someone dies? (You see what I did there? I didn’t correct him but corrected the speech when I repeated it. And Echolalia means the meaningless repetition of another person’s spoken words as a symptom of psychiatric disorder. Yeah, I’m pretty sure I have it now after living with it for years!)

J: They got killed!

Me: (thinking – Oh, I guess my answer wasn’t the one that he was looking for. Good thing I didn’t say anything).

J: Mom, What happens if someone die? (Apparently, I took too long thinking for him to wait for a response).

Me: What?

J: They got killed!

So we repeat this cycle 3 more times, and then he is distracted.

Me: (Really I should just drop this at this point, but maybe there might be some important conversation that comes from this): Did you see a show where someone died?

J: Yes, I did.

Me: (thinking – Did I fail as a parent? What show did I let my child watch?)
I ask, “Which show?”

J: Just like Bambi. His mother died. And just like Simba – His dad died! And Papa died! (Okay, at this point, he could insert any Disney show, and probably someone’s parent died.)

Me: Papa?

J: From The Good Dinosaur. Papa died from what?

Me: From What? (I do a lot of repeating because Papa died from what could mean What did Papa die from? or What movie is Papa in?)

J: The Good Dinosaur. Is that what happens from the movie?

And then he is off to something else – conversation over! I think I might have forgotten to insert another quarter into the machine.

Me to Melissa: My dying sound is pretty bad.

Jack-Jack proceeds to show me his dying sound!

A Short time later:

J: What does think of others mean?

Me: What?

J: It means being nice to other people.

Me: Yes, it does. (thinking- I know we have had this conversation before – about 20,000 times).

Sometimes I feel like we are on an endless loop of the same conversation over and over again. And then I remember that I prayed for him to talk!

And then there are the things I wish I could go back in time and tell my younger self about Autism.