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.