Thursday, November 12, 2009

Finding his voice

I remember very clearly the doctor telling me all that I should expect with RTS, and the worst of it, the one all of us parents with an RTS child fears probably the most is speech. I didn't get it, I ignored what the doctor said, and thought to myself of course he will talk, he will even talk on time.

Two years down the road we have no words, we have no signs.
Tuesday night Alex hurt his foot, at first I thought he had just scared himself because he fell, and that is why he was so upset, but instead he had hurt himself, but was unable to tell me. I only figured it out when he was still grumpy after nap, then I had to investigate. Finally figuring out that his foot hurt. He was so upset and crying because he hurt, the only way he knew to tell me was to cry.

I'm not the same girl in denial I was in the NICU, but I'm still very hopeful for communication, and very discouraged that we have none.

I'm pretty good at anticipating his wants, and needs.

I cant help to wonder what he is thinking, he knows we all talk to each other, he understands what we are saying, does he wonder why he can say things, does it make him sad. How scary it must be, how unbelievable frustrating. Is Max going to have his first word before Alex? What if something hurts, what if he is feeling sad about something, but all he can do is cry? My voice can only go so far for him.

I have to help him find his own voice.


The VW's said...

What a great picture of Alex! He's such a happy boy!

Not being able to communicate is one of my biggest fears for Gavin as well, especially now that he is going to school!

Having our special kiddos sure does make you appreciate the "little" things in life! Keep up your great work with Alex, Jessica! He'll find his voice one day, I'm sure! HUGS!!!

Jacquie said...

Have you signed alex up for early intervention?
I had a speach and occupational therapist come to the house each week. I live in NJ, so I don't know if all states are the same, but...the ladies that came were WONDERFUL!!! they're were also realistic, which in my case of complete denial was helpful. My son has autism, and I wasn't prepared to believe my perfect child had any issues.

Alicia said...

Oh Jessica, I am frustrated for you and Alex. That is so tough. With as determined as you are, you will help Alex find his own voice someday.

I do love the pic, by the way. I love Alex grins!!

Dani said...

Hey Jessica
Communicating is my biggest concern for Noelle for the same reason I want her to be able to tell me if she is hurt or sad. She knows one sign "please" which she uses for "more" and "Want" so we have to figure out what she is wanting. I am going to send her to a sign language school this spring I am hoping it will help with her communication.
I wonder every day what she is thinking and feeling. She is so smart but she cant show every one else.

Brandi said...

I wonder the same things about Nathan. Is it scary? Is it frustrating? I have to be with him every minute of every day because I am the only one that knows his cues as to what he wants or needs. I can't imagine ever leaving him with someone that doesn't know his cues and what he needs. It just doesn't seem like it would be fair to put him in that situation.

Hugs :)

Anonymous said...

My special needs granddaughter learned to sign way before you could verbalize anything. this really seemed to help communication.

Kristi said...

I am with you Jessica. I fear the same. I understand what Noah want's but his only word is mom. He just started signing but I have to keep hope for him to talk. The other night out of the blue he said "bye bye". Haven't heard it again but that gave me some hope. I get you and I totally understand. I fear Nicholas will say his first words before Noah. It hurts.

Unknown said...

I feel for you, and for Alex. I hope he does find his voice, and I'm sure you'll be right there to help him along! Have you thought about teaching him some sign language? Just a few signs?

Kelly said...

Just like the other RTS mom's in our same positions, I remain hopeful. I cling to it....I know Alex will talk. Remember he and AnnaKate will talk to each other on the phone.

It WILL Happen!


Michelle said...

I hear ya, Jessica. Austin is still non-verbal and it's very frustrating for me. A few times a year he'll make the sound 'ma' but that's it. He only uses 3 signs on a regular basis as well. We've recently begun shopping for a communication board for him. We've tried it 3 times in the past with loaners but it was just a toy for him. Maybe now that he's older...

Kelly said...

The older Max gets the more concerned I get that he hasn't said ma or da! He has signs but he is so frustrated when it comes to communication. It breaks my heart. There is always lots of crying when we can't figure out what he wants. I am there with you! Kelly F

Anonymous said...

I have a lot of hope for children like Alex - that they and he will learn to communicate. There are excellent speech pathologists and new technology everyday. An SLP is the person to show you (and Alex) the way.

Best, Barbara

Terri H-E said...

Alex has a voice and he hears it loud and clear, is assured you hear it - or he'd be frustrated all the time himself. Assistive technology helps US understand. Sign, symbols, sophisticated devices...all there to help those around the thinking, processing, deciding, critical thinking person without functional speak - understand. It assists the rest of us.

You understand Alex. He has a voice. You are just seeking something to help the rest of us get past our shortcoming of not being able to process Alex's voice.

datri said...

I completely understand. My Kayla is five and still nonverbal and doesn't sign. She can use photos to request what she wants. She goes to school and I wonder how her day went. But she always gets her point across! She does have ONE word she is able to use consistently. Want to guess what it is? Of course, it's "NOOOOOO"!

                               Four years, overn5,000 injections of insulin just to stay alive.