Psst: Make sure not to miss our giveaway! Enter to win A Special Joy by Ashton Drake here. Just comment and share!

Friday, April 27, 2012

Mothering a Child with a Disability: The Secret Thoughts on Speech

As a mother of a child with a disability one of my greatest goals is to raise awareness. With 94% of women aborting pregnancies diagnosed with Down Syndrome I believe that if women only knew what a joy raising a child with Down Syndrome is, then maybe they would see in their womb, not just a life full of challenges and hardship but instead, a life worth living.The risk in this however, is that I write less for those who have chosen life, and while sharing the beauty of everyday with an extra chromosome, I fail to bring light to the inevitable frustrations and fears that are also part of life...every life. So last night when I spilled to my DS momma friends that  I was frustrated with Ella's progress in the language department, I was called out on my fear to blog about such things. What if there are other mother's out there feeling the same way I do but are afraid to say anything? And like me, they just need a little validation and encouragement. So here it is....

Lately, every time a momma posts about their child's new word or how they call "Momma" from their crib or make animal sounds, basically anything speech related, my celebration with them is overshadowed by sadness. Not a tearful sadness but more like a grey cloud that lingers blocking the sunshine because I wish I could post the same about my Ella. I wish I could share a video on Bragbook displaying her latest and greatest language skills and prove to the world that she is defying statistics and is developing "normally" despite her diagnosis. When in reality, the gap is widening and development is so slow and I am becoming frustrated. Ella will be three in June, but if anyone asks, I say she is two and a half because I am afraid. I think that they think that she is younger because she doesn't talk and for some reason, I actually believe that people might not think that she has Down Syndrome.
And when I say she doesn't talk, what I mean is that she doesn't say words. She babbles and has her own variations on phrases but probably unrecognizable to anyone but Momma, who, in reality, doesn't have a name. Mothers! never complain that your child says "momma" too much and if I ever do, slap me and then remind me of today, when my heart is sad that my baby girl doesn't call me by name or anything else for that matter. Jakob is the only one that she has a sound for and it takes the form of "Ob".
But here's the kicker. She can make the sounds. She says "ma" often in her babble but when asked to say "mama" she blows a kiss and when asked what sound a cow makes, she gives a glottal roar....the same for every other animal.

In other areas Ella is doing well. Her receptive language is moderate and physically, I can't keep up. But speech, to me, is huge. I feel like it is a key to acceptance. Perhaps it is because, for myself, when I speak to a person with Down Syndrome and they respond with articulation and clarity, whether it be true or not, I feel that somehow it is a reflection of intelligence....now before you go and slam me for saying that, realize I am just admitting to my own stereotypes which, guess what, don't completely vanish the day you have a child with DS. So naturally, I feel that if she can speak well then she will not be judged as much, and will not have to work so hard to earn the respect of her peers and society as a whole.

But here is what I have to keep reminding myself and what so many wonderful ladies have reminded me of: these frustrations, these hardships, these hurdles only make the victories sweeter. It will come. It may not happen the way I want it to. We may have to work our butts off every day for YEARS but it will come....In His time.

One thing is for certain: the girl has sass.

12 comments:

beth@redandhoney said...

Thanks for sharing, Krista. I love these "secret thoughts" posts. I am grateful for the many times my babies call my name, even when I just want silence already!

Sarah said...

I think you are very brave and that your honesty is very touching.
You mentioned "the book" the other day, and this post made me think of what it is that slightly bothers me about it. It has nothing to do with Kelle herself, but that she has become the poster child for a mother of a child with down syndrome. And although her words are beautiful and her daughter is gorgeous, is it really fair to always paint things so rosy? It almost seems to be a little unfair to other mothers. Kind of like when someone downplays your emotions.
So applaud you for being both an advocate, but also being real (and she may be real...but, I doubt that most DS moms could relate to the constant rosiness). I think she chooses to only show the beauty...which is great...but, I think it is also healthy to show the things that are frustrating about the diagnosis.

Kmarie said...

I ditto Sarah. I agreed with this post http://momastery.com/blog/2012/04/23/bragging-rights/?utm_source=rss&utm_medium=rss&utm_campaign=bragging-rights .... what do you think of it? It's how I try to view most of my parenting because the scale is so wide and even good bragging without giving some legit concerns hurts people. I think you have a good perspective. We all have milestones that are not reached... Some more than others but I have noticed that if one area is "lacking" there is always another area that surpasses some how. Lovely

Liam's Story said...

I love this post! Thank you for sharing it! My son has a physical disability and I find myself thinking similar thoughts. The victories are so much sweeter because it is such a hard fought battle!:)

Amber said...

Krista, love your honesty and can certainly remember having very similar feelings. Keep on, keeping on. You nailed it, it will happen in her and His time. And that picture is absolutely precious!

Jenny said...

Thank you so much for writing this one Krista...The older Russell gets, the more speech starts to concern me, because, God help me but I'll admit it too, I think it has to do with intelligence also...sigh...And you're so right, not all the stero types you have magically disappear when your child is born. It's a process.
I am sure there are many, many, Moms who can relate to this post!

Jen said...

So so true! Thank you for posting this. Why is there so much pressure to somehow 'hide' our DS children's struggles. I feel absolutely the same way...hoping people see Anaya as 'normal', that maybe somehow she will 'catch up', when I know it isn't true. Her speech lags too and I have the same thoughts about it as you do. You're not alone! I too have to just surrender and say, ''she'll get there when she gets there".

Malaika said...

Dear Krista,

Thank you so very much for your honesty. My daughter who also has an extra chromosome is now 6 years old and you're right,it does come...in her and God's time. She is teaching me to shed my unhealthy relationship with perfectionism. Just the other day she completed her 1st 75 piece floor puzzle all by herself and my heart was over the moon with joy! And she was so proud of herself! So get ready because once she's saying it she's going to be singing it all day long.

Lisa said...

I just came over from a perfect lily and love this post. I was like you and while I'd the sound "mamamama" many time it never had been applied to me when my girl was going on 3 - at best I was "eeee" but only when there was a need to be fulfilled. I heard angels sing the first time Cate "mommy". Funny now 3 years later I'd already forgotten that until I read your post. Today when Cate says "mommy" about 700 times I will cherish each one because you just reminded me how much I longed for something I now take for granted.

Nina said...

I'm new to our blog but will now be a regular, so grateful that "Perfect Lily" gave me the guidance and direction to find you. This article on speech is an incredible gift and reminder. Your frustrations and fears are ones that many experience so it was incredible helpful to have you share them; it makes the rest of us assured that we're not alone. Everything will happen in God's timing, according to His plan; just nice knowing that we're not alone in the journey! Please keep writing from the heart!

Debbie said...

Oh my goodness...I am so happy Patti (A Perfect Lily) sent us over here. You have articulated beautifully what I have been feeling. The only contact I have with other moms who have children with Down syndrome is through blogs, which is just amazing, but that grey cloud is over me, too, every time I see/hear one of their kids talking. Josh was two in Dec. and he and Ella seems to be doing a lot of the same things speech-wise. I try to remember it will come with time, that just like everything else it will come in God's time and Josh's time. But it is so hard to wait! Thank you again, and I'll be visiting often!

Krista said...

Thank you so much everyone...and to think I wasn't going to post about it and here I am, feeling completely encouraged and truly blessed. Thank you all so much for your comments saying it will be okay, or to let me know that I am not alone. It really means so much!

Related Posts Plugin for WordPress, Blogger...