Additional Needs
Age Appropriate
by Jodi Shenal
on 26th April, 2024
Speech Disability - Pushing Through the Pain
My heart broke today, as it has so many times before. The speech barrier is not only difficult and frustrating, but it can also be heartbreaking.
My daughter and I have a unique way of communicating, as I am sure all families with a speech impairment do. There are so many things that I understand almost telepathically. Those are the awesome days that seem to run smoothly.
I look at my daughter when there is a group of us sitting and talking, and she is so patient, and she just sits and listens. Sometimes she will grab my arm with something she wants to share and then I am her voice. I always say what I believe she wants to share, and I then verify with her that I said what she wanted me to say.
I always try to include her in the conversations somehow, I’ll ask her a question, or by saying something about her to share with everyone. I can tell, everyone kind of forgets about her sitting there. They don’t talk to her as if she can’t hear just because she can’t talk.
No one does this intentionally, but it still makes my heart sad.
When she is with her group of friends, they all hang out with her, talk to her, hold her hand, and they too have a unique way of communicating. I can see that they naturally accept her just the way she is.
This isn’t to say that other people she spends time with don’t accept her, it is just a different kind of acceptance. Then there are the challenging moments or days. We have had to play a sort of charade many times over the years when our telepathy was not working. I have to ask a lot of questions and sometimes it can get exhausting trying to figure out what she is trying to say, especially if it goes on for an entire day about different subject matters.
Then there are the moments she gets angry and frustrated and then I am frustrated and then she never gets to share what she wants to share. I put myself in her shoes (the best that I can) and I cannot imagine how it must feel to not be able to say what I need to say.
I remember a time when I was a young girl. I had some exciting news to share with at least one of my six other family members. When I got home no one was there! I was so sad and felt let down.
I just remember how lonely that felt.
Back to what happened today. My daughter and I were going out to lunch. We had decided on a place and when we pulled into the parking lot she pointed at another place. I, of course, assumed she was saying she wanted to go there instead. So, I asked her that very question only to be told “no”. Now I am really confused, she is frustrated and then I am frustrated. We sat in the car for ten minutes trying to communicate. She was just wanting to talk about the other restaurant and our future plans to go there with a friend.
Finally, we got to our seats in our place to eat and she kept doing sign language for “sorry”. I told her again that she has no need to be sorry. Then she started to cry. She cried because she wants to be able to talk like the rest of us. That is what rips my heart out. To see my sweet girl cry because she cannot talk. It breaks her heart.
The amazing part of this story is that I can count on one hand the number of times she has cried about this. She is an amazing woman with great strength. She remains peaceful and accepting.
There are many people who have a speech disability.
There are many forms of communication such as sign language and assistive speech devices.
My daughter has some finger coordination issues, so full sign language is out for her. She has a speech app that is an amazing product, but she tends to be uncomfortable using it. I’m not sure why, but I think she does not like others to wait for her, or she feels embarrassed to use it. Many of the people in her life have tried to encourage her to use it more. That is a work in progress.
The reason for this blog is to remind others that your child is not alone and neither are you. I know there are days I feel like we are the only ones on the planet trying to communicate with such great difficulty. I know this is not true, but she and I are alone in moments of struggle.
Seek out all the help you can get for communication and try to stay calm while trying to communicate. I know firsthand this can be difficult. We are all human and get frustrated. The thing is, our children pick up on how we are feeling in the moment, and it will escalate how they are feeling. I say to all of you…..be strong and calm!
