Thursday, September 25, 2008

Finding Courage through Sharing: The Future


This month's topic is coping and hope for the future.

None of us really knows what the future will hold. Ten years ago, if you had told me what my future had in store I would have said you were crazy. :) To be honest, when it comes to my kids, I try not to think too far into the future because the uncertainty is stressful!

Even the simple things that so many parents take for granted have question marks for us. Things like college, career, marriage and family. Even the thought of middle school is enough to make me anxious, but I digress.

Of course we have every expectation that they will have ample opportunities for success and happiness, but the worries are still there. They may need to take extra care with their choices to find a good fit. For example, they are extremely bright but would probably not do well at a large school where freshman classes can have hundreds of students all sitting in auditorium struggling to see the professor (or more likely a TA) at the front of the room speaking through a microphone and scribbling notes on an overhead. If they choose a professional field that they love, they will most likely excel as a result of their dedication and persistance.

On the other hand, understanding social nuances is something they struggle with. If they argue with their bosses the way they sometimes argue with their parents and teachers (over the most ridiculous things, with no sense for when to let. it. go.)... or go ballistic when something doesn't go the way they expected it to, they could find themselves out of a job!

For that matter, how will they fare in job interviews? Such emphasis is placed on eye contact and being able to answer questions fluidly. How will an interviewer respond if they take an abstract question too literally, or if they struggle to put their responses into words?

Their social challenges may well impact their relationships also. And yet they have so much to offer! Sure, they sometimes say things that come across as incredibly rude when they don't mean it that way. That's not likely to go over well with their friends or potential dates. But, they don't play mind games, they are extremely loving, and they'll never forget a birthday or anniversary! :)

Will they be able to live independently? Will they be able to drive or will their difficulty with tuning out extraneous details making driving too dangerous? Will they learn to discern from nonverbal cues when people are being less than honest with them or trying to take advantage of them?

I know, no parent really knows how things will turn out for their children and all parents worry. But, autism presents unique challenges and these are just some of the things that keep me up at night when I let myself think too much. So how do I cope with these worries?

For me, the most effective way to relax about the future is to look to the past -- to look at how far all of my sons have come since they were first diagnosed with autism. Without going into too much detail, here is a brief summary of where they were then:

When Cuddlebug was diagnosed at age 3, much of his speech was echolalia. He had extreme difficulty focusing on any task and was continually distracted by the sights and sounds around him that most people tune out. He couldn't respond appropriately to basic questions such as "what's your name?" (his response: "name") or "How old are you?" Even the most mundane transitions or changes in routine would trigger intense meltdowns. He had a very difficult time with basic coloring and could not write or draw.

Bearhug was also diagnosed at age 3, at which point he struggled with almost constant overstimulation which led him to be perpetually hyperactive (that was one of his coping mechanisms). He too was prone to frequent intense meltdowns. He was capable of brief back-and-forth interactions but interpreting his comments was difficult. Transitions and changes in routine were particularly challenging. He also struggled with fine motor skills such as drawing and cutting with scissors.

When Little Bitty was diagnosed at age 2, he had regressed to a point where he was often nonresponsive. We could look directly into his eyes, touch his shoulder gently, and say his name and he would look through us as though we weren't there (not always, but it wasn't uncommon). He had no way of telling us when he was hungry or thirsty. He babbled frequently, but rarely uttered distinguishable words. The little boy who once did a little 5-second "angry dance" when he was upset, began having 2-hour-long marathon screamfest meltdowns.

Today, they still have their challenges but they have come such a LONG way. Bearhug and Cuddlebug are doing well in school (with some support, but they spend most of their day in their regular ed classroom). They are able to carry on conversations and express themselves quite well. They have come a long way in terms of figuring out their own ways to cope with overstimulation and they rarely have full-blown meltdowns anymore. Little Bitty has really come a long way with his speech, and he can often express his wants and needs, although he still struggles with that at times. He is learning so fast, and surprising us with new things he's picked up on a daily basis. He interacts much more now.

If they can make such progress in these few years, who knows what they will be able to accomplish in the years to come as they grow towards adulthood. All we can do is keep working with them and encouraging them -- I have no doubt that one way or another, they will accomplish great things!

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Anonymous said...

What a great post. Always keep that positive attitude! You're a great mommy!!!

kristi on September 26, 2008 at 12:24 PM said...

Great post! This is what I tell myself too. My daughter worries so much about her brother. But I know he will do better and better. It is hard sometimes to watch him struggle. Check out my blog where I talk about the meeting I had yesterday with his teacher.

Anonymous said...

Awesome! I know how you feel and I worry the same things that the future might hold for my kids.

Your kids have come so far and I like to think that mine have as well - it because of the perseverence and love that parents give theri children that they are able to accomplish so much!

Keep up the good work, you are truly, as Julie said,a great mommy! on September 26, 2008 at 1:43 PM said...

I just want to second the previous commenter...

Great Post!

Elizabeth Channel on September 26, 2008 at 11:22 PM said...

Oh, I just love this post! You are so inspiring and encouraging!

You are such a great mom and a great friend! You will probably never realize how many people you touch through your story!

The Farmer Files on September 27, 2008 at 3:51 AM said...

Thank you so much for opening your heart and opening the conversation for parents of special needs children. With sharing comes understanding.

Anonymous said...

What a wonderful post! I do the very same thing -- looking back to see how far we've come is a real encouragement.

It's so easy to get bogged down with tomorrows worries, but it sure helps to look back on all of yesterday's successes.

I so enjoy peeking in on their new little art projects every week and hearing about their new successes -- I am confident there are many more to come! :)

~Michelle @ In The Life of a Child


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I'm a mom of three boys on the autism spectrum, 11-yr-old identical twins and a 7-yr-old. My husband is a SAHD.


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