Down Syndrome Awareness — When a House is a HOME!

I have 4-year-old identical twin boys. They don’t always listen (LOL). Now there’s a shock, huh? They also HAPPEN to have been blessed with an extra 21st chromosome — also known as Down syndrome. Some would claim that they don’t listen to instruction or follow direction because they do not fully understand the language. Sure, there’s a language delay. But, no, I do not attribute their occasional unwillingness to listen or follow directions to their language delay or any cognitive deficiency (though I find there are others that do). Did you notice that I used the term “unwillingness” versus “inability”. They’re able! As a matter of fact, most of the time, they listen quite well. If they didn’t, they’d likely be dead or severely injured… You see, they tune right in to the word “danger” and stop dead in their tracks when I use it! Even when it’s a situation they’ve never encountered. They know that danger can be generalized to many different situations and it’s something to avoid. Yeah, they’re little smarties. They generalize at all the right times and specialize when appropriate too. I’m absolutely sure they UNDERSTAND the language just fine!

Nope, I NEVER underestimate my young, language-delayed children’s ability to understand. Language development can be a tough thing to test with all the counterparts and complications including receptive and expressive language, oral motor functioning, muscle tone, articulation and phonological components and more. Different levels of ability and/or issues in any one or more of these areas as well as the tester/testee relationship significantly impacts the ability to accurately measure language development. My children are expressive language delayed. That is, they don’t express themselves — specifically via speech — very well for children their age. Actually, they express themselves VERY well. They are full-body communicators — using speech, sign language, pointing, props, acting out like charades and dragging me to whatever it is they want me to see or understand. Whatever it takes. But, given some of their issues include oral-motor planning (getting their mouths to do what their brain is thinking/wanting to say in a way that is recognizeable by the listener), low facial muscle tone (an “o” is harder to produce so they don’t do it so often), and articulation (making it sound the way everybody else says it… understandable to the general public not just Mom). With all of these expressive language issues, receptive language becomes a bit tougher to test too. Often because the tester doesn’t understand their response. But, let me tell you, as I said before, I have no doubt that my children with Down syndrome are absolutely able to comprehend our language… They even understand the subtle nuances of our language…

For instance, they know and understand way more than just the dictionary definition of a noun like “home”.

We went camping last weekend. On day two of our trip and at a particularly fatiguing point in his day, Michael asked me longingly, “Home?” Said with just the right inflection to let me know that he was asking whether we were going home now so he could finally rest his weary camping bones. With a kiss and a hug, I responded, “Yes, we’ll go back to the camper and rest”. He leaned back down in the stroller for the walk and meekly mumbled, “nooo”. I thought then, incorrectly, that he was fighting sleep. I meandered back to our campsite hoping he’d fall asleep en route… to no avail. Still wide awake, I took him inside the camper and plopped him down at the table offering him his favorite comfort-foods, apple juice and [Tostito] chips. Even with his beloved chips in hand, he more emphatically pleaded, “HOOOME?” Again, I acknowledged with a hug and explained that the camper was our home for the next few days… He hesitated — briefly considering my answer and studying my face for better understanding (me of him, not vice verse). Then, with a determined squint of his eyes he said, “No…. HOUSE!”

He wanted to go home to his house not home to his camper. He understood the whole time we were there that the camper was our [temporary] home. I know because he used it like a home-base. Always wandering about (loosely supervised with a “Let’s see what Squirt does flying solo” approach) and always coming back to OUR camper…. Home! But, when he said “home” in the pleading and different way that he said it, the camper is NOT what HE was trying to express! He knew what I meant — we were headed for the camper — and he knew I wasn’t getting HIS meaning. So, he thought about it and finally expressed himself accordingly. In a way I could not possibly misunderstand!

They “so totally rock, dude!”

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About Maggie

I'm a stay-at-home mother of 3 children including a 15-year-old daughter, the Old Soul, and 11-year-old identical twin boys who've been blessed with an extra 21st chromosome (aka: Down Syndrome). I happily spend my time doing all that I can do -- breaking the proverbial box wide open -- to foster my children's development and then sharing what I learn with you through this blog.
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5 Responses to Down Syndrome Awareness — When a House is a HOME!

  1. Suzie says:

    I guess I didn't realize both your boys has Ds. This is a link to a New Zealand television that talks about twins with Ds, you are like one in 80 million! http://www.youtube.com/watch?v=D39k9HfhIBQLily was interviewed by this show – I love it!

  2. Cari says:

    I am experiencing that same exact thing with my son Gabe, who is on the spectrum. He has both expressive and receptive delays as well as the miriad of speech delays. Today at his therapy appointment we never left the dressing room, for an hour, becuase of his two year old refusal to get dressed; not because of his autism. His therapist and I KNEW he was just being two and KNEW he understood what he had to do to go "play" even though he doesn't have the words to say it. It can be such a fine line sometimes, but we know our kids better than any test, paper, book, or specialist!

  3. Stacy says:

    OPPS, sorry I had to delete a comment meant for another one of your posts. Anyway, I did want to comment that I think that verbal language is so overrated…my boys YELL at me in sign. Its hysterical. I never would have known that you could be yelled at with a child beating their elbow chasing you around the house demanding a cracker. huh?? the things we learn 🙂

  4. Tara says:

    I LOVE this! My typical 2yo is expressive-language delayed. When we went to get his hearing tested, I told the tester, "He either has a hearing problem, or he is going to get disciplined more!" 🙂 Turned out to be a "listening" problem…lol! He understands exactly what he's told, he just chooses to ignore me sometimes. I fully expect Eon (with Ds) to follow in his brother's footsteps.

  5. MaggieMae says:

    Suzie – Thanks for that great link. I did actually contact them to thank them for advocating on behalf of people with disabilities. Wonder if they'd consider a US version of that show??? BTW – Yes, both of my boys have Down syndrome. However, unlike the Whittingtons, my guys are identical twins (not fraternal like theirs). That makes our situation just slightly more common (LOL)… Maybe 1 in a million chance instead of 80 million. Thanks for the comment.

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