Wednesday, February 20, 2008

Never Say Never

One of my newer co-workers came into my office yesterday and saw pictures of my children. He asked about them, and being the Mom that I am, I went on and on. He’s probably sorry he asked. However, one comment he made really threw me for a loop. He said in reference to Ashley, “It’s just so sad all the things she will not be able to do in life.” I was in shock for a moment, and my weak response to him was “Of all the words I could use to describe Ashley, sad is not one of them.” He soon left my office, but I spent most of the evening and half the night thinking about his comment – that’s probably because I have never really thought about what Ashley will not be able to do, but rather, I celebrate everything she does do, and it’s a very long list. So, in an effort to make sense of my feelings about my co-worker’s comment, I started thinking about the things in my life that are important, how I am able to do them, and contrasted those things with Ashley’s abilities. My conclusions were interesting.

First, there are not many things I can’t do, and the list of things I can’t do doesn’t really bother me. For example, I can’t change the oil in my car - I can’t go on rollercoasters because they scare me to death - I can’t peacefully coexist with camel crickets in my house - I can’t really do a good job of urinating while standing - I can’t sleep during a car trip - I can’t square dance - I can’t give birth to a litter of kittens - I can’t eat brussel sprouts - I can’t speak Spanish or French or German – I can’t tell a joke without messing it up - I can’t do a cartwheel, and I can’t wear socks while sleeping no matter how cold my feet are. I’m sure there are many other things I can’t do, but overall, I don’t feel my good life is jeopardized by that list of things I can’t do.

So how about Ashley? Well, she can do a lot of the same things I do. She can do her laundry – she can clean house – she can cook – she loves rollercoasters – she can love and express that love quite well – she can be quite opinionated and can argue extremely well – she understands the concept of exchanging money for goods and services – she can bowl – she can roll her tongue into a “V” (I cannot) – she can throw a ball really fast over her head – she can do a marvelous Donald Duck imitation – she can communicate when she is sick or tired or hungry – she can give herself her own medications through her G-tube – she knows which plants are poisonous and which aren’t – she can read and use a computer – she can operate the TV remote control and she can hide it so her brother can’t find it to change the channel from Sponge Bob Square Pants – she can tell the cats to stay off the furniture – and she can eat a pound of spinach leaves.

Actually, I can’t think of anything she can’t do. If she wants to date and marry, she’ll be able to. She can have children if she wants. She will be a very good caretaker for a child, and hopefully she will help care for me when I am old(er).

Oh yes, I did think of something she won’t be able to do – she won’t be able to drive unless there are some major technological changes in transportation. She has epilepsy and in our state that means no driver’s license – well, that and the fact that she is blind. Her brother, Chip, said that just means she will have to live in New York City because nobody there drives. And she can sure raise her arm and whistle for a cab.

Now I wonder just what my co-worker thought Ashley would not be able to do in her life because I can’t come up with much.

Oh, and if you are a first time reader and wondering what disabilities Ashley is tagged with, here is the list:

  • Fetal alcohol syndrome

  • Deafblindness (profound hearing loss in right ear, severe loss in left ear, totally blind in left eye, 20/2000 in right eye)

  • ADHD

  • Autism spectrum disorder

  • Epilepsy

  • Juvenile xanthogranulomas (a rare disorder that causes tumors to form – she currently has three brain tumors, and has had two in the past)

  • G-tube for past feeding issues, now used solely for medications


Niksmom said...

I wandered over here from your comment on Casdok's blog today. THis is an excellent post. I think of these sorts of things often about my own child. If I spent time fretting about what he can't do (now or "ever") then he will be guaranteed never to do them.. If I celebrate each success and help him build upon them, he constantly astounds me. It's so bothersome when people make ignorant assumptions about anyone with disabilites and what their CAPABILITES are.

Casdok said...

Who knows what our children will be doing as they grow and flourish. We cant live our lives through our children. We shouldnt place expectations on them either.
There are many things i cant do, but people dont say to me that its sad, so why do they do that about our kids?
Its also important to live for the day, enjoy each day and not worry about what they may or may not do in the future.
Great post.

mayfly said...

A very nice post about. I came here from the "Clear Blue Water" discussion at CASDOK's blog.
There are three paths autistic children take in their mental development. Asperger's children pretty well parallel those of their NT peers. High-functioniing children develop slow for the first years of their life, and then jump on to the Asperger's path as their language skills improve. Low- functioning children progress very slowly throughout their lives and indeed are the most likely to regress,

My daughter has no physical impairments. She is happy. We celebrate her accomplishments even when they are fleeting, perhaps never to be seen again for months if ever. Studies of children like my daughter, with severe mental delays, indicate that Karen's pessimistic view of the future is by far the most likely. Especially for children who are both delayed and apathetic.

We, my wife and I, see ASD children younger than her, with parents describing the same symptoms we saw as they age make a great leap in their abilities leaving our daughter far behind. We are happy for them, but it reminds us of how slow our daughters mental progress has been.

She has made tremendous progress behaviorally. At one time she seemed to be nothing but tooth, tush, ands claw. I firmly believe we face far fewer behavioral issues than many people on these lists, or perhaps we think that because those behaviors have improved so very much.
In our day to day life, we feel ever so blessed to have a loving, smiling child.

I wouldn't give her up for anything. Our loving her has been returned in abundance There was a time, a very long time.when I was unsure she would ever be able to return my love. I am by nature extremely selfish in relationships, she has taught me so much about what love truly is.

We know it's about time to set up the special needs trust. We wonder who we should aks to be her custodian. We expect, when she is 18 will need to declare he incompetent, These are not happy thoughts, and I am deeply saddened to write about them.

So we live for today. Those things mentioned above are years away. When I get home, she'll lead me to the sofa, press on my shoulders to tell me she wants me to sit down and then climb on my back for the first of many piggy-back rides this evening. I'll see her gleaming smile reflected in the sliding glass door. I am home, and all is right with the world.

Lisa b said...

I think having a child or someone in your life with a disability really opens your eyes. It is sad that your coworker is so sheltered from what is the reality of life - we all have different abilities.
I just hope for those kinds of people that life doesn't throw them any challenges but I suppose like us they will learn to adapt and grow.
I feel kind of sorry for your coworker tbh. what a sad way to live in fear of anything less than 'perfect' as no one or nothing is perfect.

little miss trashy said...

i think you're getting a little defensive . i have a minor defect . my right ear is deaf and deformed , hence i can't comfortably sport a cute pixie crop haircut or keep long hair , because schools here require students with long hair to tie them up to a ponytail (i keep the defect a secret). it's insignificant , but as a teen i hated that . i did think it was sad . now that i'm 18 and i've grown out of that phase , i am instead grateful that i am made to be a little more special ... i don't want people to feel sorry for me . i was sad , because of the little things i knew i was missing out .

nonetheless , i've realised that there are sooo many beautiful and more important things in this world that it is not even possible to ever capture them all . never mind the little things . i totally agree that we should count our blessings , even the most simple and mundane things . i am still learning how not to take them from granted .

your colleague saw what ashley would be missing out , because he imagined himself in her shoes , and to him it felt like losing something really important . he was just trying to sympathise . so don't blame him ...

but i concede that sometimes , the greater the 'obstacles' (forgive me for using the word , my vocab can be rather limited) , the further you'll go because something in you tells you that you must work harder than everyone else , and soon you see things differently from others , like the way you have in this post .

i thank you for sharing this . and you are protective just like my mom !

>>> ashley <<< she's a special girl ! [:

Candice said...

I've gotten this comment too in regards to Rebecca. I just told the person that she can do many things & yes, she may have to do it differently or it may take her longer but she is very capable and it will get accomplished.

It's funny to me how people feel sorry towards our kids. I feel sorry for them, how they will never be able to experience the joy or satisfaction that comes from the smallest accomplishment. To me, that is a shame - they will go through their life and never appreciate the small things.

We also do not allow our children to say "CAN'T". This is something that Rebecca has caught on to. In her previous homes, she used her deaf/blindness as a crutch - we don't allow that here. She has 2 arms, 2 legs & CAN do it! There's alternatives that we allow to "I CAN'T" - my kids can say that they need help with that or that it is hard for them (opening a tight jar, etc.). All of the time, I have them try first.

You are right, the list of things that can't be done is really small and we have to remind everyone of this. Thanks for blogging on this. :)

Ashley's Mom said...

Mayfly, your comments left me with both a very warm feeling inside as well as tears in my eyes. It is truly amazing how our kids can completely change the person we once were.

Little Miss Trashy, I didn't mean to sound defensive. I figured out a long time ago, actually when I first decided to adopt children with special needs, that most people and especially my co-workers would have a difficult time relating to my decisions. That was another thing Ashley and my other kids helped me figure out - people project themselves into my situation, and if they can't picture themselves being there easily, the result if they don't understand a lot of my decisions and a lot of my committment to making a good life for my children. Among many other things, my children have helped me become a more tolerant, understanding person.

Thanks to all the commenters for your insight and support.

Penny L. Richards said...

My usual response to such comments is a puzzled face and "Like what?" Let them come up with the list of very important things they imagine her not doing. When they do, some of the list will be incorrect (in fact she can and will do those things), and some of the list will be rather silly (not so important things--hardly worth getting sad about missing), and some of the list may at times be closed to her, but not by her disability--instead, by the limited expectations of others.

I remember when my son was born and diagnosed (rare chromosome disorder), thinking "oh, he'll never do this and that." And then "Well why not?" So he's been in a choir, he's been on sports teams, he's been to camp, he's traveled abroad... what's to stop him? He may not walk--well, maybe walking is overrated. Maybe he won't talk-- but he does communicate, and that's the real point of talking, isn't it? There's no need for anyone to feel sad for him, nor for Ashley.