Thursday, August 1, 2013

Masha Wants to Ask You Something

Until she was three and a half years old, Masha was raised in a completely inclusive environment, an orphanage. Her babyhouse, a sprawling building which at one time had been the barracks for soldiers of World War II, was split into three sections of children’s quarters. Central to each was public visiting area and a non-working kitchen. There were three other children with Ds that we saw there, though not in Masha’s section, and no other children with visible special needs. All together there were about 35 children living in the house.

Masha seemed to be treated like all the other children, although we were told to never let her cry... so she may have been a wee bit spoiled. She was incredibly independent, able to dress herself including putting on her own shoes. She ate at the same table as the others from the same style of glass bowl, using the same large utensils, and drinking from the same style open cup. Outside she rocked herself on the same single swing and played on the same scooter toys.


Once we got her home to the United States we realized that Masha watched other children very closely and expected exactly the same as whatever they got. And although she has chilled out a little bit about this (in that her response to not getting exactly what another child gets has improved from an epic tantrum to a minor fit) she still wants it, whatever it is.


And she will work ten times as hard to get it. She is tenacious.


But now, she is in school. She just wrapped up her first year of general education kindergarten (which we fought very hard for). And now more than ever she wants what they have, to do what they do, but she has hit a wall.

Her speech apraxia and her learning disabilities made it very hard for her to interact with her peers the way she wanted to. She knows that some things are different for her, and she is annoyed by that, which is evident by her acting on her frustration.

Gen Ed is harder for her and on her than her self-contained pre-k was. Even with generous modifications and supports, it is still harder. After weighing all the pros and cons, we still think it is the best thing for her given the options we have to choose from. So this coming fall, Masha will begin Gen Ed Kindy again.


We are doing everything we can for her to help alleviate the apraxia. This month she begins hippotherapy. She has her own iPad that has apps for apraxia as well as everything else under the sun that she likes. She gets speech therapy 4x every school week. She is still constantly surrounded by family and peers that talk to her, and around her.

She talks all the time. She sings, tells stories, tattles, reprimands, demands, instructs, argues, praises, loves... and yet only a few of her words are intelligible.

(Masha, only home from Ukraine 2 months, with a lot to say. Her doctor at the babyhouse told us she spoke about six words in Russian, but now we know that she was just not able to be understood.)

The causes of speech apraxia are unknown, and there is no cure for it. Why people with Down syndrome are more susceptible to it is also a mystery. Almost 150 years after Down syndrome was first clinically described, we still don’t know much about what that extra chromosome is actually doing and how it affects the people who have it.

To take research from theories and mouse models to real health benefits requires our community to unite behind the need for answers. And we need a general public that cares enough about Masha and the rest of the 6 million people worldwide with Down syndrome to step up with us. Visit and join us in reimagining the future. If she could, Masha would invite you herself.



Lisa said...

I forgot about the Potty Opera video...that is awesome! This is such a great post, and really hits home since one of our daughters with Ds is in the exact same situation as Masha. It is so clear that both girls desire to do what they see others doing--expect to do what others do. It is hard to see struggles with communication getting in the way.

ckbrylliant said...

Oh my gracious that swing picture with the messy hair!! Too cute. We hear you Masha!!!

Chromosomally Enhanced said...

Speech! The Bain of our existence! I can feel her frustration...Maddie is so frustrated and she like Masha is a observer! And I think this will serve them well someday gotta love the spunk for survival and the strong will to be alike! I love those traits...yeah Masha you are going to set the world on fire! Smiles

Anonymous said...

My Dominic is just the same he is 9. I could understand she was talking about being undressed and going in the bath then had a little song about it just like my boy. She will get there and when she does it will be prefect xx
Maxine Waith x

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