Wednesday, June 29, 2016

Mama, why don't you understand?

I'm a little sad today.

Around 7:30 pm last night Drake took me to his bedroom to get his shoes. He put a pair on, decided he didn't like them, and changed shoes. 

He then took me by the hand and led me to the door. I figured he wanted to go next door to my parents. But, I was wrong..

He took me to the car, opened the door, and was about to get in his car seat. He wanted to go somewhere. 

He couldn't  tell me where he wanted to go. He clearly had it on his mind and was trying so hard to get me in the car. If there has ever been a time in my life that I wanted to read someone's mind...this was it. 

I tried to distract him by playing with dog.

He stood by the car door trying to figure out a way to get me to understand.

He was thinking hard.


I led him over to the steps and we sat down.  By this time he was a little upset.  He wasn't having a meltdown, he wasn't having a tantrum, he was just incredibly frustrated and sad because he couldn't tell me where he wanted to go.  Drake doesn't understand long conversations, but he does understand more than anyone realizes.  So, I talked to him.  I told him I wish I understood.  I told him that I was proud of him for trying to communicate with me.  I told him that I love him and one day things will be easier. And I prayed..."God, please let my baby find his voice."

Over and over again I told him, "I'm so sorry buddy, I don't understand."


He put his head in his hands as if to say, 'Why?! Why can't I just talk.'  It broke my heart into a million pieces.

I can't get it out of my head.  It was pitiful.

You see, Drake wants to talk.  The desire is there, but his brain and mouth haven't made the connection yet.  We believe he has Apraxia of Speech. I can't explain this to him.  I don't even understand it all myself.  All I know is that my baby wanted me to take him somewhere and I would have given anything to be able to fulfill his desire.  I have no clue where he wanted to go.  It was an unusual time.  We are normally getting ready to take a bath and get ready for bed during this time.

Maybe he wanted to go to church and participate in bible school?  I've talked about it a bit and I know he has been listening.  We haven't gone yet because he has such exhausting days of therapy.

Maybe he wanted to go to school and see his friends.  School has been out for over a month now.  I know he misses them. The first pair of shoes he grabbed were the shoes he normally only wore to school...but then he put them back, so again, I'm not sure.

Maybe he wanted to go to McDonald's, tumbling with Brodie, the grocery store, or maybe he just wanted to ride for a bit.


For the first time I realized how incredibly frustraing trying to communicate is for Drake.  I haven't worried much about it because Drake is at ease most of the time.  He can usually get his point across without words, pictures, or anything else.  He has always been persistent in showing us what he wants or needs. He knows a few signs, and he has just started using an AAC Electronic Device. Drake doesn't have horrible meltdowns, he isn't a behavior problem, he doesn't have huge sensory aversions....but he is autistic.  Autism currently prevents him from being able to communicate effectively.

 I have come a long way on this journey with Drake. I have accepted Drake for who he is, and I strive to make sure others do as well. I have been resolute in getting him the help he needs.  I've been his voice, his advocate, and his biggest fan.  But last night, I felt defeated because he felt defeated.

Sometimes this is hard.  Yes, it is hard for me as a parent to watch my child struggle...but more than anything it is hard for Drake.

I want to take the hard parts away.  I want him to be able to talk to me, if that's what he wants to do...and last night he did.  He wanted so badly to talk to me.  He was pleading for me to understand, and I couldn't.

However, Drake is a determined child.  When  he wants to do something, he will do it.  He will fight for it, he will push himself, and he will make it happen.  He taught himself to swim last summer.  No lessons, no help, just sheer will and determination. His daddy and I believe in him and he knows that. So many people are cheering him on daily and I have no doubt that he will find his voice if the desire is there.  It will be hard work, but this kid knows all about hard work.

I can't wait for the day when he is able to tell me exactly what he wants.  It may be tomorrow, or it may be next year, but I have hope that it will happen.  No matter what, I always want Drake to know that we are proud of him. I believe he already knows and that assurance gives him the resolve to accomplish many things despite any diagnosis.















5 comments:

  1. I hope that day comes very soon... DC did not speak until he was 7. Learning sign helped him be a little less frustrated. Even to this day, there are times when I have no idea what he wants and I feel awful. I get this 100%

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  2. I can understand your frustration. I am dealing with this at age 13, still. If only each of us could find the key to unlocking our kiddos.

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  3. I hear and feel your frustration! As a grandparent of a non-verbal little boy with autism I have experienced the same with him. It does break your heart, but I truly believe they understand you are trying. I hope your little guy someday starts talking with you. You are not alone in this journey <3

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  4. Oh, do I understand this struggle. I've said this before, but your experience still amazing me with how similar it is to mine - aside from the behavior problems. Brandon definitely has those, but I believe it stems from a lack of being able to communicate. We're also getting an EEG to rule out any seizure activity. Our new ST just mentioned an communication device as well. Pictures has helped Brandon communicate with us some. For example, I have pictures of all his movies on a ring so he can pick one himself. If only I could have a picture of everything in the world on me at all times! Brandon has taken me to the car as well, and we usually just drive around. I always think about where he might be WANTING to go...but without verbal communication and being limited to signs and pictures, we can't figure it out :(

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