Let's Talk About It

My friend tells me all the time that I speak hillbilly. Being from the great state of KY, I do still have a strong accent most of the time. Especially if I am talkin to my Momma!

For so so long, speech  was one of the biggest fears I had for LB. I never wanted to her to have the issues of communicating her needs, wants, frustrations, desires, etc. I often worried and still do, that she wouldn't be able to tell me if she were in trouble, being harmed or in danger in any way.

Being that she was diagnosed in-utero, we had no idea what to expect. I was rarely around anyone with DS and the pics you google on the internet didn't talk. To be honest, I avoided videos because they made me upset to think that our little baby could struggle her whole life with never feeling understood.

Fast forward a few months in, we bought the entire series of the Signing Times videos. We just knew that our little gal would dominate them and our fears would be eased. Then she hated them. She still watches every now and then and to be fair, she did pick up a few words as did we. But signing isn't her first choice of communication.

As she got a bit older, my fears were my reality. She didn't say momma until she was almost 3. She wasn't able to communicate much of anything outside of her jumbled versions of some words that she thought we were saying.

So I just knew she wasn't getting the proper testing with her hearing. So we had that checked. Nothing.

We were in speech therapy with early intervention, we were doing all that we could to teach her at home. Or it felt like it anyway.

Then we took a break. Or we would have a day off that week from speech therapy and when she got that break, was when we would see some movement in her progress.

Once she was aged out of early intervention, the whole family needed a therapy break. So this summer, she was therapy free for the 2 and a half month. We hadn't done anything outside of school since Dec. We had tried Gemiini.org as a tool at first but we weren't seeing any movement in her interest and then she started to loathe them as she did the Signing Times.

It wasn't until last this summer that I started to see a HUGE change in her. We discovered you tube for kids on her ipad and once she found some nursery rhymes she liked, she was OFF! The next thing I knew, she was saying words left and right.

Now, you throw on Frozen, she is all over it. But that gal now hits her words strong. She attempts almost every single word, tries to imitate what you are saying, reads WITH you... it goes on and on. While its great progress, we have a long road ahead.

She still has issues when forming her words and most people don't make out what she is saying as well as we do. But she is getting there. We are back in formalized therapy and she's killin it there too. Their most recent assesment put her at a 2.5 yr old level for understanding and verbalizing. I would agree with that. While it's hard to see sometimes, I know its accurate and a very fair assesment of her abilities.

This is also where the water meets the road and the other kids start to notice the differences. When the language is different, children notice. This summer, we attended a birthday party for a neighbors daughter. This little gal and our gals play together at playdates, etc. so they are familiar with one another and play well together in those instances. At the party, the birthday girl was playing mostly with her cousins and other friends and much less with the girls. One of the older girls was playing with a scooter that LB wanted. When the girl wasn't understanding LB as she was asking for the scooter, LB shoved her off - gently - but as in a way to say - hey, I want a turn. When you have no words, you use your hands, right? This girl was obviously greatly upset and expressed that. Rightfully so. So I took LB to the side and told her she couldn't use the toy at that time and to apologize. In her eyes, she didn't do anything wrong really. She was just asking to play with the toy. This happens often. Its tough to deal with because you want her to be expressive but with words.. not actions.

At the same party, there seemed to be another little gal that was kind of playing on her own. She and LB clicked very well. I had never really witnessed her play with another kid as well as she did with this little girl, including her sister. Then I heard the little girl speak and I noticed that she had some speech delays as well. My heart welled up with pride. It was like they were meant to find each other that day and found such comfort on their own, they didn't need words. I kinda wanted to get the moms number and ask her to bring her daughter over but I didn't. I did howver thank her for raising such a sweet gal. (As my tears welled up in my eyes again.)

Its for these reasons that I push LB's speech. That I ask all family members to pronunciate. To say the full words and not use baby talk. Because just because you can't understand her, doesn't mean that she doesn't understand you.

Kids are cruel. Language and speech are their first tools and their first weapons when it comes to other kids. It stinks but it's the truth. That's the inclusion I want her to have. Friends that get her. A way to express herself. A way to communicate with everyone so that she feels free and connected.

Sadly enough, speech is also one of the greatest challenges for those with DS. Here is a great read from the NDSS on Speech and DS. It truly is a journey.

While I am no longer as much as in fear, I do still greatly hope for LB to develop better communication skills. I dream of it and I see her face light up when I understand something, or get what she is trying to tell me. I want to be able to have a full convo with her so that she knows I understand her and I am always her to talk to and through with her. I also want to eliminate the isolation and loneliness that has to come with poor communication. I breaks my heart into a billion pieces to think she feels that way.

So, with the help of a fantastic speech therapist and a great team to support her, we are going to pronunciate and accentuate and coach every day....

For now, I will relish in the fact that she says, "Hi Momma. I uv uuuu"

It melts my heart every. single. time.

Until next time...


  1. I just cannot believe how big shes gotten. She has certainly changed from toddler to little girl! How fun.


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