I really dislike when people say "Is your child high functioning"? I especially dislike it when it is in reference to just 2 of my children. Why doesn't anyone care how functioning the other 2 of my children are?
WHY? I'll tell you why, it is because, in my opinion, people are ignorantly, inadequately educated about Down syndrome and disabilities in general.
Functioning. What level do you function at? Are you living? Are you breathing? Oh! You are??? ME TOO!!! I guess that is pretty high functioning. I mean seriously, think of EVERY single action that is required to BREATHE and, therefore, be LIVING. That is about as high functioning as you get.
Guess what, all of my boys are high functioning
(even the two with Down syndrome....gasp!)
(even the two with Down syndrome....gasp!)
Jared reads above his peers, he spells above his peers too. He excels in the school setting he is placed in right now; yet, he is struggling in Math. You see, he was able to skip 3rd grade math entirely and 4th grade math is taking it's toll on his grades. Does that mean is brain is lower functioning? Heck NO it doesn't! It means Jared is achieving and functioning to the best of his ability and will continue to do so as time goes on!
Joseph knows his colors, shapes, can spell out his name, can recognize his name, say ABC's, is potty trained, feeds himself, and terrorizes Jared and Jackson daily. Does this mean he is lower functioning than his typically developing twin? Heck NO it doesn't. It means Joseph is achieving and functioning to the best of his ability and will continue to do so as time goes on.
Jackson is a talker, a mover, all boy, all go, all the time. He can count to 40, has been able to spell his name for over a year now, knows his phone number, his ABC's his colors and gets bored in preschool regularly. Does this mean he is higher functioning than his twin brother or his peers in preschool who still are learning their ABC's? Heck NO it doesn't. It means Jackson is achieving and functioning to the best of his ability and will continue to do so as time goes on!
Jadon is giggling, clapping, entertaining himself, learning to feed himself, can now drink from a cup and will now cruise furniture some too. Does this mean he is lower functioning because he cannot do all that Joseph can or all the things that other children with Down syndrome are accomplishing who are also 3 years old? HECK NO IT DOESN'T! It means that Jadon is achieving and functioning to the best of his ability and will continue to do so as time goes on!
Honestly, it breaks my heart to see so many worried about how high functioning my boys with Down syndrome are. It breaks my heart to so other parents say, "let me tell you, my child is not high functioning..." How? HOW? Can a mother or father say that? And why on Earth do nosey strangers give two hoots what my kids are doing and what gives them the right to equate that with functioning levels? Seriously?
There is no functioning level in this house, we all function the same. We all are living and breathing human beings and that is ALL that matters here in my house.
Love,
"I will go before you and will level the mountains; I will break down gates of bronze and cut through bars of iron. I will give you hidden treasures, riches stored in secret places, so that you may know that I am the LORD, the God of Israel, who summons you by name." Isaiah 45:2-3 (NIV)
10 comments:
It is annoying to hear that question in regards to my son, too. But I have to believe that it's only because he is blowing those old, antiquated myths right out of their old, antiquated, pre-conceived minds! I think they just don't know how better to exclaim their surprise at what he IS able to do since he's been given the love, patience, and help to get there.
spot on! I think you need to be a guest blogger again :)
I hate that! And I hate it when people say "you can hardly tell she has Ds". Shoot me!
Thanks for this post! I don't like the question either, but find myself trying to figure it out too many times. I like this perspective much better.
perfectly said!
Very well said.
This rings true on so many levels for me right now. We are New Zealanders who live in Australia. Our countries have a reciprocal agreement allowing us to be here without a VISA. However, we are only eligible for some benefits like healthcare. We don't qualify for your equivalent of social security for example. We are currently in the process of applying for Permanent Residency which will mean we can get more services for our youngest, Samara, who has Down Syndrome, and our older kids can get an allowance to study etc.
Anyway, we moved here 5 years ago. Samara was born here 4 years ago. But being born here doesn't make you a citizen unless you are still here when you turn 10. And having a disability disqualifies you (and your entire family) from getting Permanent Residency unless you move away from the cities, and apply for, and receive, a medical exemption. So we packed ourselves up 2 years ago, and moved to the outback. I hate it, but what can you do?
Anyway, we went for our medicals back in June. And yesterday we received a letter requesting more information from our pediatrician on Samara.
Now, I think the entire process is discrimination. But I was really upset when it became not just more medical information. They want to know her developmental age/IQ, her future needs in regards to special schooling, and her potential as an adult in regards to independent living and employment!
That has gotten me severely p*****d. Not only are they asking for a crystal ball, but they are going to use that crystal ball to judge whether or not she is worthy of being accepted in her country of birth!
Now, for this reason more than any other, I am glad she is what these so called professionals would term fairly high functioning. But what if she wasn't? It SHOULD NOT MATTER! How dare they judge her value like this, based on how many words she can say, basically?!
Ok, rant over for now. Will go back to complaining on Facebook. May even have to write a blogpost about it later....
Amen sister!
I have a son with DS too and I just try to be more patient with others I guess. Others that don't have experiences with kids with DS are just not aware or educated as you said. I don't feel like its their fault, they just aren't experienced. And there are many kids with DS that aren't able to breathe on their own as you said when u said r they breathing? My son had a tracheotomy his second week of life for a yr and a half. I even used that terminology before but as I found there is no determination of who is "high and low functioning" and it's subjective by definition so I don't really use it but I do think it's unfair to be so angry at those that don't know or understand and may use that terminology. Most people I have met are trying to relate and simply may not know how or may not understand how alike they r to all of us and how there isn't a human difference in our angels. In many peoples lives though, living with down syndrome isn't exactly the same as everyone else as I know we have had to go through a lot medically that others might not have had to. Again I am not trying to pick sides or anything, I just feel like everywhere I look everyone is attacking the general population for treating out kids differently or using the wrong words. I don't think everyone's out to get us, I just think they don't have experience and they simply don't know...
I didn't read all of the comments, but I hate it when people think that their physical features determine how "severe" or "high" or "low" functioning they are...WHAT???? People just need to keep their mouths shut, because they are only revealing how little they know.
According to people in my town, Anya (adopted from Russia) looks more like she has Ds than Ellis Anne (my biological).....why do people tell me that?????
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