Letter To New Parents #5: Born Without A Language

The Fifth Letter

Dear New-to Autism-Parents,

I heard you were concerned because your child is not yet talking. I heard that you have been wondering if he will ever speak and how long you will have to wait until he calls out to you, "Mommy!".   

I remember being in that same place. Desperate to hear Sage's voice and to know what he is thinking. I remember the ache in my heart as I entertained the thought that such a day may not come.  

Although I have no way of knowing what the future holds for your child, I did want to tell you about my story with Sage, who seemed to be born without the framework of learning language. He had to build it up from scratch.

Sage was born with a beautiful red-headed, blue-eyed twin sister. You probably have heard that girls develop faster than boys, as I had heard, so I didn't worry too much when Sage wasn't talking. But then, at a little over 2 years of age, Hope just took off in the talking and conversing department. And she kept on going, leaving Sage in the dust.  

He didn't say anything besides letters, colors and numbers, until he was over 3 years old.  He didn't even say, "Mommy". He didn't seem to know we had names. Didn't know that he had a name.

I remember one day when we arrived home from the grocery store, and I was trying to get the twins to put their shoes in the "shoe basket".  We had had the shoe basket set up for quite a while at this point and when I told Hope to put them away she trotted right over and proudly plopped them in to the basket.  Sage just wandered off to another room and started playing.

I told him again to put his shoes in the shoe basket. But I got no response. Then I took his little hands and helped him grab his shoes. I walked him over to the basket and "helped" him put his shoes in.

On another day, Sage was eating Cheerios and he thought it would be fun to dump the cereal onto the floor.  I told him to pick them up and put them in the bowl. He continued to stare at them, as if wondering if they'd magically hop back up into the bowl.  I told him again to clean it up. No response.  Frustrated, I lifted him out of his seat, put him on the floor and took his little hand. I "helped" him pick up some of his Cheerios and put them in the bowl.

The next thing that happened absolutely amazed me.  We still had no idea Sage had autism, but after this incident, I knew he didn't know English...the language he heard every day of his little life. 

He picked up a couple Cheerios and put them in his bowl. Then he reached over and picked up some more.  Over and over he reached, and picked up, and put it in the bowl.  He even went to the other side of the table and got Cheerios I hadn't seen, and put them in the bowl.

All this time I mistakenly thought he was being stubborn, but it turned out he had no idea what we were saying to him!  I felt terrible. All that time, I thought he was just strong willed but he was the most compliant child on earth when he understood what was being asked of him.

I had no idea that a bright child who knows all his letters, numbers and colors in order from a super young age (18 months or so) didn't know what a shoe was? Or Cheerios?  Or what "pick up" or "put away" meant?  He didn't know what Mommy or Daddy meant, or what it meant when we'd call his name.

He had zero framework for language built into his brain.  He had to start from scratch and build it up.

Soon after this, we learned about his autism and found the resources we needed to help him.  The very best thing we did for him (but the hardest, too) was to put all his favorite things up on a shelf where he could not reach them.

Now this was much more of a challenge than it seems, because Sage was a very gifted climber. So Daddy put up shelves, and we pushed the furniture away from the wall.  When Sage wanted something, he had to work really hard to find a way to communicate that. If he wanted a DVD, or a puzzle, he had to get our attention, point in some form or another, and utter something, anything, to get the desired toy.

He would come to me and grab the back of my hand (not the palm of the hand like most toddlers would do) and then instead of pointing at what he wanted, he'd push my hand in the general direction of what it was. I would pick him up so he could "point" or reach for it. Once I knew what it was I would tell him what it was called. "Do you want to watch a show?" Say, "Show".

And I'd wait.

And he'd get so upset, as if it hurt him to try to talk.

It was terribly hard. But he had the motivation to try when it's his toy he wants. So we hung in there.

"Show".  I'd repeat, and point to it, tap on it.  Finally, after many tears of frustration from both of us, Sage said "Sh" or "ah" or something that was clearly an attempt to label the toy. It didn't have to be close to correct, at first..just any attempt would do and we'd throw a party to celebrate! And of course, give him anything he asks for (within reason) to reinforce it! 

We did this with everything and then after a while, it clicked. He figured out that things have names. He started to learn those names and from there learned to connect 2 words, "Snack Please?" "Watch Show?" "More Puzzle". And slowly but surely, with the help of talented and gifted speech therapists and preschool teachers, He began talking.

 By the time he was 5, he could say 5-word sentences. And today, at the age of 11, he can say anything he wants to. It may be in an unconventional format, like filtered through Wii language, or drenched in computer terms, but he is understood.  Recently he was upset that his baby sister was playing in his room and he said, "She needs some 'parental controls' up here!"  

I love to hear how he puts things, and how he is making sense of the world. He is funny, and creative, and just loaded with personality. (And the truth is, he'd still be funny, creative and loaded with personality even without words. It would just be displayed differently.) 

I didn't know this day would ever come. Neither did his doctor. A couple years back, she said if I had asked her 2 years ago if we would be sitting here having a conversation like this, she probably would have said that she doubts it. But here he is!

You know, what's really neat to think about, is that God knows our language. He knows how to talk to us in the best way, how to meet us where we are, how to say something we need to hear in a way that we can "get" it. 

Pricilla Shirer (during her Gideon study) said something like, "You can hear the Word, and know the word in your mind, but it isn't until you are put in the wine press, where that word is pressed down into your heart so that your heart cracks, that the Word gets in there and the seed grows.  And then, you know..."

And it grows and blooms because you know it in a way you never could have before.

That is just so true... for spiritual things as well as with Sage learning language. We had to apply some pressure to the words before they sunk in and "clicked", and then he knew.

I hope that this story encourages you and gives you hope to hang in there as you work with your child. God knows how your little ones brain is wired, and He knows how to teach him to talk.  He will guide you and lead you in your methods of teaching.  

It may be that your child's way of talking to you is purely through his own body language. Or, maybe sign language, pictures, writing it out, or it may be verbally talking. And maybe it will be all of those ways, like my 8 year old who has a completely different "flavor" of autism.  

Keep in mind that God gave you this little child on purpose, with a good reason. He knows you completely and decided to give you this child with his specific needs. None if it is random, none of it is a mistake.  You have been chosen, hand picked and equipped by God to care for your little one.  You are the very best parent for him.  

Your personality, skills and abilities are the perfect match to bring out the best in you child.  

Until next time,

Merri

 

 

Letters to New Parents of ASD kids: #1 I Believe You

letter_writing

Dear new parent of a child with autism,

I'd prefer to be sitting across from you at a local coffee shop rather than sitting behind this glowing box tapping away on the keyboard. But this will have to do for now.

First of all, I just want you to know that I believe you! I believe everything you'd tell me about your child.  Things like those unusual behaviors  that when you tell your friends, family, or co-workers, they say:  "My child did that too, and he's fine", "All kids go though that stage." Or:  "Boys develop slower than girls do." , "Boys play different than girls."

I believe that you know your child best, and you know when there is something different.

When Stevie was first showing signs of autism (a little before age 2), all my friends told me that I was over-reacting. "He's too attached to you to have autism." But I knew. I saw the signs. I saw him dancing on his tippy toes and staring at the screw in the wall like it was the most exciting thing to cross his path that day; all the while ignoring all the brightly colored toys and siblings beside him.

I saw him in his crib, wiggling his fingers in front of his eyes, giggling.

I watched the sudden un-awareness of others around him.

I watched his progress in language and speech come to a stop.

I was there when he became afraid of his food.

I watched, helpless, as he went into high-pitched screaming fits where everything and anything would make the fits worse, and he'd scream for hours.  Sometimes up to 4 hours straight. Screams. And I'd sit helpless here behind this glowing box searching for help. For ideas. For anything that would help me be a better mom to him. To help him calm down; stop crying.

I knew this was not normal.

It's so hard to know in the depths of your soul,, and yet be told that it's normal; you are over reacting.  I learned to just nod yes, and leave it at that. I knew. He was my child and I just knew he had it.

Mostly, I knew because my first son also has autism. I had already been through this once before.

So hang in there. God gave you this particular child for a very specific purpose. You are the best parent for him (or her) that there ever will be.

God knew. God knows. God has this whole thing planned out.

So don't give up, ok?  God is here with you. He will help you in your time of need.

Until next time,

Merri