"How Severe Is It?"

[laurasnowbird]

Okay, this is just one of those things that kind of makes me crazy, and I'm wondering if anyone else is ever asked this question. I'm very open about Ethan's Down Syndrome, and take it as an opportunity to educate people. (I just realized I'm bringing this on myself! LOL) Here's a for instance. Someone will ask how old Ethan is, and when I say 29 months, they'll exclaim "Wow, he sure is a little guy!" And I'll reply, "That's typical in children with Down Syndrome. They tend to be smaller than the typical population".

Invariably I'm asked "How severe is it" or "is he high-functioning?" And it's one of those questions I never quite know how to answer. I usually just say "Well, by now it's clear to us that he is not severely affected, but it will be several years before we have a better idea".

Just wondering if you guys get this question, and how you respond! I'm sure someone out there has a much better answer than I do.

[Staci]

Laura, I get asked this question ALL of the time! And it drives me crazy, too! I'm never sure how to answer...I usually just say "Well, nobody will know for sure until he's older...it's kind of like asking whether a baby is going to be an A student or a D student...you just don't know those things yet". blah blah blah. Or people will say to me "it doesn't look like he's very severe". And I want to scream! Anyway...yes...we get asked quite often...and I need a better answer, too...I seem to go on a rampage when asked LOL. And it usually follows after the question "how old is he" and I answer "Three and a half!" and they say "Oh my, he's so tiny" LOL
I really don't know how else to answer this! Sorry I couldn't help! Just wanted to let ya know that I've been there many, many times.

Staci

[meghans_mom]

Yes, Laura -- I get that. The worse offender is a person I love very dearly...and who loves MM very dearly as well. Everytime she comes to visit I get a phone call the next day raving...and oh it's very "mild" blah blah blah.
She's told me several times she thinks they've "made a mistake w/ her diagnosis". I think MM does pretty good but I know she's slower than typical kids in somethings. It doesn't mean she won't get there...but I really don't think there have been any mistakes :-)
More often I get "oh, I'd never be able to tell if you didn't tell me"...when I meet friends or acquaintances I haven't seen in awhile or who haven't yet met or seen MM til now.
I think I would say, well yes - she does really well, we're very pleased with her progress but she has a great team of therapists and teachers who work with her and who have helped her.
I don't really know...and it's another one of those things I don't think I want to have to deal with.
Laurie the Non-Confrontational :-D

[didmyheartgood]

I just did a post about getting my feelings hurt today and then I read this and it made me smile... Thanks! I needed this...

Here is a classic.....

"well, he must not have it very bad."

Kim

[Claire]

God people do need to get educated. I get asked that a lot too. I just tell them that to us Adam is our son and it doesn't really matter how functional he is or will be. I have also had people tell me he must be one of the good ones since he doesn't have much of the profile, so we are lucky. As if! >:(It just turns my stomach. I told one lady when she said that "Well your husband has big ears, does he hear bettter then you and me?" She said "No" so I replied then physical traits have nothing to do with your intellect right? ;D ;D
Hope this helps.

[christie]

LAURA girl OMG I can sooo relate to this post. I have been asked that a few times over the years and I just say to the person asking, "COMPARED to what" I then just say all kids with DS or not DS are kids and I don't rate them on their functioning I personally have a theary over the last 11 years of dealing with this, is that people tend to say " Ohhhh they must be high functioning" as a lack of not knowing what to say and hopefully make the parent feel better I use to get quite annoyed but now Colin and I just laugh and say they have noooo freakin clue and our bet is 9 out of 10 people really mean well.

I don't know that there is any PERFECT answer to such silly statments. BUT I can tell you not what to say, LOL

One day I was just not in the mood, we were at the Heart Doc and this old lady leans over and says to me Ahhhhh Bless your son, and she wispers, he is "Retarded" and I just looked at here and said very seriously, OMG your kidding, you think, Nooo one ever mentioned that, LOLOLOLROF K, like I said I was not in the mood

CC

[cindylou]

Christie!! ;D ;D You crack me up girl!! I wish I coulda been a fly on the wall that day. Talk about some cajones!! We get this question often--or statement that "Geesh- I woulda never known it. She's so high functioning!" I tend to just say--we're glad she's doing well--but we know MANY kids with DS who read much better then Kaylee and have no speech issues...to try to give people the idea that they have a misconception about Ds. Kaylee is VERY social and has a great group of typical peers whom she is usually playing with when people meet her--and they tend to just see her as one of the crowd of children--meaning she doesn't stick out for any reason. HOWEVER, if they were to actually sit down and talk to her it would be apparent that she has A LOT of speech issues--but she is totally with you in conversation--she doesn't ride without training wheels-but hey, she RIDES! She's never met a stranger.. ;D

[Emilysmom]

Laura~ We've heard this question about the "severity" so many times over the years.....as well as the comments about Emily not having Ds "very bad". As much as it wears me out to constantly feel the need to educate people about Down syndrome, I usually just go ahead and try to explain that she does really well in some areas and is very far behind in others.

I have to admit this though: We learned that Emily had Ds a few weeks before her birth, and we got this news over the phone by the doctor. I swear to you, the very FIRST question out of my mouth was "are you 100% sure"? The next question was "then tell me how SEVERE it will be". That question came from me.....a registered nurse with experience in pediatrics! I was asking the doctor to predict for us how well our unborn baby was going to "function"! It just shows that you really don't KNOW much about Ds until you have a child with it, fall in love with them, and see day to day what they can achieve. I try to remember how UNeducated I was before Emily came into our lives, and that helps me to see that people truly just don't know what to say. I shudder to think of all the silly things I might have said before I knew better.
Claire......your explanation about someone having big ears but not being able to hear any better makes sense!! Physical characteristics really do not make a difference.
Susan

[adisonsmom]

As the parent of an infant w/ DS I get that quite a bit and Susan I have to say i wondered the same things when we found out that Addy had DS. My father in law went to a few support group meetingsin northern VA and brought us a DVD that actually was current!!! No 70s clothes and talking about institutions....anyway...the geneticist in the video said something in a way I just had never thought of it before.....
Just because your child has 47 chromosomes, please don't underestimate the power of the other 46. If they are predisposed to be intellegent or athletic those traits are still there, they just may need some help and encouragement in discovering them....
So this doesn't help much with what to say to other people and I have a very limited experience...I let them know what the video says and then just tell them only time will tell and I know that God has a plan for her no matter what level she is functioning on.
Hugs to all of you and thanks for sharing!!!

Lori

[momofrussell]

Well, I get the same questions/comments but it doesn't bother me in the least like it does some of you. The way I look at it, is that the person asking or commenting really doesn't know much on the subject and I'd rather them ASK then assume! Of course they need to get "educated" and that is why they are asking or commenting... it's an open door for us to welcome the feedback and educate them! That is MY opinion though. Although no one has assumed Russell was HIGH FUNCTIONING LOL (he is very delayed in many ways) lots have said "Sorry" and asked if it was difficult, and other questions. I just answer them like any other conversation I would have with anyone. They are asking so they WANT to know! And i find nothing wrong with that.. even if it isn't asked in an appropriate way for us.

I am usually very matter-of-fact and happy about how I answer them. I welcome all and any conversation about Russell and who he is or isn't. It breaks down the walls a bit more and just lets them know it's OK to be curious. I would really dislike being the one who isn't "in the know" and ask a question, as GRATING as it may sound to the receiver and get an attitude about it. It would make me shy away from asking any more questions about that subject.. and THEN I really wouldn't know about the subject. I hope that made sense. That is not to say, some may never understand, grasp or accept your answer or concept. And they will still form their own ideas about our children. But... heck.. I can't fight it either. I don't think there is any one way to answer those questions. I just go with the flow.

I have myself, asked questions about other disabilities to parents. It's how we learn! And Shute, they too, may go home feeling how some of you feel, and that was not my intent, but we can't change how we feel.

Hugs

A.

[shellk]

Laura,
My favorite is "Oh she will get better as she gets older." I hear that more than I care to say...Right along with the infamous "It looks very mild." At first my response to people and family was how can it look mild she is still a baby and now that she is 5 I still get these and the last time that I really responded the wrong way...My response was " Gee, when did you become an expert because I know that I am not one and how can you crawl into her mind and know what is going on, I am her mother and still can't fit into her mind.." I know that was a mean response but, COME ON!!!! sympathy and things like that are really over blown to me..I am not looking for there sympathy and that is what seems to come out of people the most..Another favorite is the "It couldn't of happened to a better couple." EXCUSE ME !! Did I win the lottery and not know of it..People try to be friendly about it but when they only know what is "Stereotyped" of our kids I guess you feel like a broken record constantly repeating the same ole' stuff..
My own mother who loves Kourtney to no end is not that educated about DS the only one really in my family that is, is my baby sister..She is a raise your kids by the book mom and sad as it is to say she my little sister has pulled me thru many ruts . Gee, I love that gal.
I have noticed and am not sure if any of you have that when I approach somone with an child who has DS in public and Kourtney is not with me I get the cold shoulder...But, as soon as I tell that mother about Kourtney and how old she is it is really like a ray of light in there eyes. and they open right up about what they are going through and sometimes it turns into exchanging numbers and a half hour conversation in the parking lot at the supermarket....I often wonder does that same ray of light open over me when I am approached only to find out that they too have a child with DS...Sometimes it just feels like I am in constant educate the public mode and sometimes it feels like I am on trial. Thanks for letting me vent and expanding my mind...LOL

Michele

[PaigesMom]

I get the same things too - "she seems very high functioning" - "she doesn't seem to be too severe, does she?" - "is she very mild"

Sometimes I have to feel sorry for the people asking the questions, lol. I feel like the sympathy is overplayed, and that not all people "just dont know what to say" so they say something ridiculous.

Usually I just respond with something like "Well, yes we are very happy with her progress so far. And as for her intelligence, there is a range of intelligence in the general population and it's the same for the DS population, our goal is to let her acheive her maximum potential, whatever that may be" -

This usually ends the conversation, gives some fact, and also some of how we feel.

Now there are instances, when I feel like someone is really interested and not just talking to hear themselves talk, lol, that I will go into an explanation of DS with them.

Debbie

[alisonzmom]

I've gotton this comment a few times and don't really know what to say.... usually say we won't know for quite a while how she will be affected.

The other comment that I've gotton a few times is "Oh, I think she'll outgrow it, after all you can hardly tell she has DS." That one leaves me speechless!!! I'm sure they mean well, but for some reason this one bugs me the most.

Barb

[rickismom]

Yea, I get this a lot too. I try and explain (if I have time) that thank G-d she is doing well, but that she is not the highest level of DS intelligence- but that today we know better about HOW to educate our kids, etc., and that most kids today with DS grow up to be active contributing members of the community.

[ALLISA]

I don't get this question anymore, but I remember geting it all the time when she was first born... like there's a test they can take to determine !

I remember telling people, that we'll just love her no matter what and that lets people know they are stepping over a line.

Now that she is older I usually remind people that ALL children have different strengths & weaknesses and she is who she is.... "severity" shouldn't have much to do with anything.
Allisa (mom to Erin, 4)