Tuesday, May 26, 2009

High functioning?

Katy, Izzy and Morgan


It's a term you become way too familiar with once you have a child with special needs. I get asked almost daily by people that haven't met Morgan if she is high functioning. And to be honest I am not even sure if I know what that term means. I think each child has their own strengths and weaknesses but how does that translate into functioning level? If she does well in some areas but not so well in others does that make her less high functioning?

I had a playgroup at my home last month with two girls (and their moms)in the same grade as Morgan (kindergarten) and both also have Down syndrome. Each girl had their own strength that left each of us envious and proud of that child's accomplishment.

Katy's speech is amazing and she was able to tell us exactly what she wanted and needed. She loves being bossy and telling everyone exactly what they should be doing but it is honestly the cutest thing to watch! I now understand the whole, "sweet and loving" stereotype that I have heard way too many times since Morgan was born because Katy was so dang sweet and loving! My kids followed her around the house and never wanted her to go home!

Izzy is toilet trained and goes to the potty without any mommy intervention. Both Katy's mom and I were amazed when we saw Izzy go into the bathroom and go about her business like it was no big deal. We have both struggled with the potty training with our daughters and getting them independent. She has also mastered the computer and playing games on it. She was even able to find the websites for her games.

Morgan impressed them with how well she is doing academically with reading, counting, letters, phonics, etc. but Morgan still struggles with social maturity. She still hits and pushes. And poor Izzy kept getting her glasses pulled off of her face by Morgan.

So is my daughter high functioning? I honestly don't know the answer to that question...she reads, counts to 20, knows all her letters and sounds, feeds herself, walks independently, verbalizes her needs. But then there are also the weaknesses...she still likes to run around in restaurants which means we usually still use a high chair when eating out, she can be socially inappropriate with pushing and hitting, she still isn't potty trained (mommy trained but not independent yet), she still needs help getting certain shoes and clothes on, she still rides in a 5 point harness booster car seat because she slides out of the seat belt on the regular booster and walks around the car while I am driving, etc.

I usually answer that she is doing GREAT! And she is! She continues to make progress and learn new things each day. She is doing so much more than I ever imagined possible when I found out she had Down syndrome. High functioning or low functioning...she is my daughter and deserves all my love just for that reason alone not based on what she is able to do or accomplish.

15 comments:

Rebecca Talley said...

I couldn't put it any better than you did in your last paragraph!

I've been using the wordstrips you sent me with my son and he's learning the words. He doesn't say the words yet, he signs each word, but he's recognizing the actual words.

Tausha said...

I feel the same way you do. Everyone on both sides of our family tell people he is very high functioning and I'm like?? I am his Mom and I don't even know if he is high functioning or what that really means. I feel like now he has so much to live up to, this bar he has to meet, it's frustrating. But I think you are right, they excel in somethings and struggle in others and they are just "Functioning" whether high or low I don't think it matters as we all love them just the same like you said. Thanks for your post, I needed that today.

Beverly said...

great post! All the girls are so darn cute!

Lily said...

Very well said!!! I even heard this term when Lily was a newborn in the NICU! Lily's just Lily.

tekeal said...

thanks for this. such a good reminder of how unique we all are.

Ria said...

great post! You hit the nail on the head. Thanks for sharing.
This sort of echoes my thoughts on my post "Remember You're Unique, Just Like Everyone Else". As a friend of mine says, "Abilities and issues vary so widely, just like for babies without DS, so the bottom line for us all is that we need to learn who our babies are as individuals".

ds.mama said...

I don't think I have ever met anyone (with ds or not) that is "high-functioning" in every aspect of life. I can tell you that by about 5 p.m. every day when I am struggling to make dinner with 3 kids all wanting something else from me, I am feeling low functioning... I can hardly remember what I am doing from minute to minute. We are all high and low functioning and as you said so perfectly about your daughter, we all deserve love based on who we are not what we can do.

JaybirdNWA said...

I agree that we all (Ds or not) have strengths and weakness. As a Therapist, I think this word is overused and when it is used, it is usually out of context. Really, I think this word is used to stroke the ego of family.

DKAZ said...

Gosh Heather-I feel like that with my own kids half the time...I know it's different when your child has DS in many ways but in others probably not so much. I think that what is most important is to focus on the positives. When asked about high functioning, what is someone really asking? Compared to what? Usually when we compare ourselves to someone or something it only usually results in negative feelings. This life is supposed to be about dealing with what we have and what we are given. I think you do one heckuva job!

And those little girls...SO cute!

Monica @ Monkey Musings said...

This is a great post. I say all the time John Michael is doing great... which is true, but he has his less pleasant quirks as well. Is he high-functioning? Possibly in some areas, probably not in others. Meeting other kids w/ Ds has been great to see how huge the variations are. I think they're all "high-functioning" in whatever their particular strengths are.

Mommy to those Special Ks said...

I hate that question too! This was a GREAT post! :)

kellyclay said...

What a great post Heather!!

Chrystal said...

Cute photo of the girls!

And I agree with you on this topic. I think the term is used more often by people who don't have an real understanding of what the baseline for abilities is of people with Ds. The assumption is made that it is low and therefore any typical-type features/actions are deemed "HF." It's a skewed perception, really, based on low expectations, which I find disappointing.

Kiki said...

You always say it so perfect! I am starting to see this debate more and more and I totally agree with this post. I agree with tausha-I needed this post too!

Mandy Buntjer said...

You just put my thoughts and feelings into words!! THANKS! I get that question daily as well, and honsetly if I go around comparing Gabe to every FABULOUS child with Down Syndrome, he is not as good at some things. He struggles with the social interactions, a little bit like Morgan, but he is AMAZING at getting into the fridge to get out all the things he wants for lunch, and picking out his own movie, and saying the word: "Shrek". Sometimes I really hate that question about where they fall on the DS functioning level!!(and I don't use the word HATE very often!!)
I miss you Heather! How are you? Can you send me all your infolike email, address.... Morgan's Bday, to put on the UDSF list so when I send out stuff Imake sure you get them! Thanks!!!!