Wednesday, October 05, 2011

The Special Needs Child

Oh, we're not kiddy shrinks, so this post is not really about children.  But I like the term, it implies that the person needs something more, that they have special-- presumably increased-- needs.  It says nothing about potential.  I use the term often, and sometimes with a bit of humor, to remind people that the playing field is not always level.  There are people who start any give race with a handicap-- a learning disability, dyslexia, major health problems, mental illnesses, horrible childhoods, addictions, -- and these set them on a slightly different course.  

Some people overcome tremendous adversity.  They function 'as if' they had no special needs.  They have stories that would let you understand if they didn't do very well in life, stories that would explain burying their heads in the sand, or crawling under a large rock.  Sometimes these special needs people are so driven to excel that they don't just hang in the race, they lead the pack, as if they had no problems as all.  They measure themselves against those without special needs and everyone forgets that they are racing with a bit of extra baggage and often very remarkable stories.  They are among the most resilient of people, and their stories are often inspirational.

Why is this a problem, or even a Shrink Rap post?  I suppose because the issues come up all the time, and they get to be problems when the special needs child gets so good at running the race "as if" they are not hindered by the weight of their problems that they come to expect nothing short of excellence. They run without the memory of their handicap and are particularly unforgiving of their lapses.  So what if one needs to rest, or if one doesn't finish the race first, or doesn't finish at all?  But even worse, their loved ones often come to expect so much that they may become critical if special needs child lags a bit here or there.

Sometimes it seems it's fine to simply say, "I have a special burden and I can't keep up right now."  

This is for Carrie who shared her remarkable narrative with me and for all the other people I know who expect so much of themselves in inspirational ways. 
And tonight, this is for Steve Jobs who gave the world so much until the very end of the fight.  


Anonymous said...

Thanks for this, Dinah. I'm bipolar and currently in a depression. I used to "lead the pack" academically, and now getting to class (let alone studying and understanding my coursework) is a struggle. Lately I've felt like I'll never have anything to contribute to the world again, but your post gives me a new insight. Maybe I'm just being forced to rest, and perhaps one day I'll be able to run again.

Sunny CA said...

Thanks for a very nice tribute.burshe

Sunny CA said...

That's funny. My word verification ended up in my posting (above).

Milo said...

A beautiful beautiful inspirational human being. RIP

thank you Dinah

Carrie said...

Thank you, Dinah. Really, very kind of you. And - as you said, to be in the same paragraph as Steve Jobs is quite touching. :)

I really appreciate you reading the narrative - it's no short read - but hopefully, with the help of the one teacher I mentioned, I will share it with a larger audience someday.

That ethics program at Penn has really done a lot for me! First off, it empowered that narrative, and then I met one of my best friends there. She has cerebral palsy, and she holds degrees from Davidson and Yale, and soon enough - Penn. She's the one who is a chaplain at the psychiatric hospital I have mentioned in previous posts. She is a huge inspiration to me every single day. Since getting to know her, I've appreciated more how challenging it is for people to get around and how to deal with grace when people say well-intentioned but inappropriate things, and so on. She's in my wedding party - after only knowing her for the past couple of years, our friendship was instantaneous. In totally different ways, we know what it is like to face the world with a challenge and to rise above it - but at the same time, have days where you seriously want to cry at the frustrations. I'm humbled and honored to have her friendship.

Thank you. :)

Jane said...

I am in my 20s with no kids, and I think if I ever have grandchildren or great grandchildren they will know the name of Steve Jobs. He is an inspiration to us all and I hope that we can all feel the kind of passion he felt for Apple, Pixar, and Next. Life aint worth living unless we love what we are doing. Love your work, love your family, love your life!

Sarebear said...

The issues of "When am I expecting too much? and "When am I expecting too little?" are really hard to balance.

There are times I'm talking to someone about accommodations I think my daughter needs, and I wince if she overhears them; after finishing talking to the person, I talk to her and say, you know what I was saying? I don't want you to use that as an excuse to not try, I also don't want you to think that you aren't CAPABLE.

See I have PLENTY of efficacy issues, and I don't want my daughter to ever think that because she's autistic (high-functioning) she isn't capable of something, that she's not able to try. At the same time there HAS to be a realistic side, because she DOES have challenges, and while some can be overcome/worked around, I'm discovering as she's now a month in to junior high, that there may be some things that, well, there's a misconnect in the brain, and you just can't solve that . . . I'm not saying I'm giving up, but after discussing certain types of problems my husband had especially junior high and up, there were so many times where, especially for open-ended questions, that he just could not connect what he knew with what he was supposed to do/answer. I've sensed this in my daughter for many many years, and we have to approach things that involve querying her about something often from a variety of angles, and quite often we just don't get the information, because I can tell there's something going wrong in the process of getting that info from brain to mouth (or writing, or typing it).

I'm coming up against this and for the first time, I don't know what to do, how do you tell teachers that there may be incomplete or undone work, when they see her doing so well in other ways? (Well in 2/3 of her classes, anyway, 2 of which are special ed).

I just can't fix this, and my heart breaks for the shame I suspect she's feeling when she hides the work from some teachers. Because my husband has told me all about HIS hardships with this stuff; he has seen alot of her in himself and we wonder if he was very high-functioning himself . . . .was or is, who knows.

I don't feel like my daughter needs FIXED, really, just . . . I feel so helpless knowing I can't help her, at least beyond discussing this a little with the teachers. I just feel so HELPLESS.

But knowing when and how to balance what you expect of your child, or hope for from your child, and how you revise that, based on their special difficulties, is a really difficult thing.

Yeah, I don't think your post meant to start a discussion on this. How could I NOT post, living with this as I do?

The post made me consider that, aside from my mental illness, physically I may be a "special needs" person because of pain and other issues with my legs, highlighted by the struggle to figure out a way to and from therapy lately. I can't take the bus THERE because there's no bench and I can't stand for longer than 10-15 minutes without the pain becoming awful. That's about roughly how long I'd have to stand there. I can WALK for longer than i can stand, although eventually that gets bad too. I'd say I can wander a store for 45mins to an hour before I'm hitting physical problems and pain awfulness.

Anyway, so the physical problems and the bus problems (setting aside the panic attack level anxiety involved with the bus) just made me think about myself in regards to this post, too.

Have no way to get to psychiatrist, so that's over, since it's hour round trip in decent traffic. I do, however, have a ride to therapy since it is 4-5 miles away. Dunno what I'll do when my meds run out.

Dinah said...

Anon: Perhaps one day you'll be able to run again, hopefully one day soon.

Sarebear: I do believe that special needs children (like real children) who have someone advocating for them and sometimes even catching them when they fall...helps a lot. Most of the adults I see who had special needs but soar and achieve despite their handicaps have had wonderful people in the background supporting them, rooting for them, cheering them on, and periodically rescuing them. You're clearly involved and advocating for your child, so certainly not helpless!

Sarebear said...

Thanks, Dinah!

Anonymous said...

Sarebear, it is very good that you don't sell your daughter short. Too many parents do this. And that's just not special needs kids they do this to. Even though she has her shortcomings that you feel can't be worked through, you never know how she will develop further with time. She may be delayed, but it won't be surprising if she ends up catching up quite a bit with all of your support.

Alison Cummins said...

My best friend from high school has a physical disability. Her mother used to tell her, “There are lots of things you can’t do, so if you can do something you should do it.” Which included doing the dishes and making her own bed, not just fun stuff.

You would probably really appreciate David Hingsburger’s blog, if you don’t follow it already. (He works primarily with people with intellectual disabilities and he has a physical disability himself.)

These are a couple of posts you might appreciate: