Not being able to speak is not the same as not having anything to say.
I believe in this picture, Easton is telling his cousin, “MY cheese puffs!” He just had to figure out his own way to say it. I would say he did it very successfully.
Having a child who has autism and has trouble communicating has been one of our biggest obstacles to overcome. There are lots of days that I just have to take a deep breath and think to myself, “He’s trying to tell me what he wants/needs, but he just CAN’T. If I’m frustrated…think about how HE must feel.”
One of the most obvious red flags that led to Easton’s autism diagnosis was his significant delay in speech development. And by that, I mean he was not talking AT ALL when I took him in for his 2 year check-up. (They say the average 2 year-old should know 50-100 words.) I would have people tell me, “Oh, he’s fine. So-and-so didn’t talk until he was well over 2, he’ll catch up.” or “So-and-so didn’t talk until he was 3, and then it was full sentences and he was fine.” I know people that say things like this mean well. I know they were trying to make me feel better. But, what this does is make my concerns about my son seem invalid. He wasn’t just “a little behind,” and there were several other factors that were concerning along with his speech. Easton wasn’t saying mommy or milk or ball or hi or bye or no. He wasn’t waving. He wasn’t pointing. He wasn’t doing pretend play. He wasn’t even really responding to his own name sometimes. He could open and close the same door for an hour. He liked to spin in circles. He did strange things that made it seem like he was in a completely different world. The first step in this entire process was getting his hearing thoroughly checked by an audiologist at Children’s Hospital. He passed with flying colors. I knew he would. I knew this wasn’t about a hearing problem, but we needed to rule that out before moving on.
Throughout the VERY lengthy observation process given by the OPS and Munroe-Meyer specialists, I had to fill out stacks of questionnaires about Easton. I always dreaded the sections about his speech. There would be page after page filled with certain groups of words, such as “animals” or “toys” or “foods” and it would say, “Fill in the circle next to ANY word your child can say.
The first time I had to fill one of these out, I started crying. I had to leave every page BLANK.
Not a single circle filled in.
This was a difficult realization for me to accept. At that time, everything was focused on what he CAN’T DO (and that was one looooooong list) instead of what he CAN DO. It was discouraging, to say the least. I knew that by turning in all of that paperwork pointing out all of the things he can’t do, it would most likely lead to his autism diagnosis.
Now, I realize that I had to go through all of that so we could get him the help he needs. I had to go through all that so I could remind myself: Work on his weaknesses, but don’t forget to celebrate his strengths.
One of the first things I learned from Easton’s first speech therapist was the term “word approximations.” Basically, for kids who are non-verbal, if they give ANY sound that is a verbalization (even though it might not sound like the actual word at all), or even just repeating what someone else has said, that is a word approximation. They may not even associate the word with the actual object or meaning, but it’s a step in the right direction toward being able to communicate.
The running joke my husband and I have is that we think Easton’s first language must not be English. We joked that it would be funny to say to the pediatrician, in all seriousness, at Easton’s 3 year check-up, “Yeah. We think we have it figured out. English isn’t his first language. That’s why he’s not talking yet. I think his first language is either German or Chinese.”
So…I did. And then she and I actually had a really good laugh about it. I’m pretty sure pediatricians hear very excuse in the book from parents who are in denial about something that might be a legitimate concern about their child. I think she was amused to hear one so ridiculous that she knew it had to be a joke. Before she walked out of the room that day, she said, “You have an amazingly positive outlook on this. Keep it up. You’re doing great.” That was all I needed to hear.
To a lot of people who don’t know him, it would still seem like he isn’t talking, but he has actually come an incredibly long way in the last 18 months. I have decided to start writing “Easton to English Translations.” Here’s Volume 1 (my hope is that there will be SEVERAL volumes):
- “deddy deddy?” = ready, freddy?
- “gee koo” = thank you
- “doo doo doo?” = tie my shoe?
- “doof da?” = shoes on?
- “doof da!” = all done!
- “doof da” = coat off
- “pee pup” = cheese puffs
- “holp” = help
- “goke” = milk
- “hi dob!” = good job!
- “dee dat?” = what’s that?
- “dup!” = jump!
- “dee dup!” = good jump!
- “bap” = bath
- “ba ba baba” = push the button
- “douche” = shoes (Yes. I giggle every time.)
- “dide?” = go outside?
- “da da dim?” = to the gym? (his favorite place to go at one of his preschools)
- “Dee? Da Dee.” = Speed? I am speed. (thanks to our talking Lightning McQueen car track)
- “Oh-hee” = Holly (one of his teachers)
- “Dededee” = Stefanie (another teacher)
- “day day day” = make that change (this is at the end of his favorite Michael Jackson song, Man in the Mirror, that we listen to every day on the way to school. He says it WITH Michael Jackson, every time. I’m still waiting to hear that first “Shamone!”)
- “AAAAAAAAAAAAAAAAAHHHHHHHH!” = I have a speck of dirt on my hand. Get it off. NOW.
- “AAAAAAAAAAAAAAAAAHHHHHHHH!” = Don’t you dare use those fingernail clippers on me.
- “AAAAAAAAAAAAAAAAAHHHHHHHH!” = NO. I don’t WANT to come inside.
- “AAAAAAAAAAAAAAAAAHHHHHHHH!” = NO. I don’t WANT to eat that.
- “AAAAAAAAAAAAAAAAAHHHHHHHH!” = I hate shopping.
(Note: the last five on the list could continue on for miles, but I’ll just include more in Volume 2.)
He also says Mommy, Daddy, hug, kiss, and poopy. He can spell his name. He can count to 20 (all the numbers from 13-19 sound exactly the same, but he’s counting in HIS language!) He sings the cutest version of the ABC’s I’ve ever heard, imitates burping noises, and according to him, every animal says, “ooh ooh ah ah.” He couldn’t do any of these things 18 months ago. His teachers and therapists are truly amazing.
I don’t expect other people to understand what he’s saying. But I understand. And I’m FINALLY able to communicate better with my son.
And sometimes, I have no idea what he’s saying, but I nod and smile and say, “Oh! I know!” because I’m simply thrilled that he’s TRYING to talk to me, and it gives me hope that I will be able to have an actual conversation with him some day.