Friday, August 15, 2008

A New Challenge

This post is one of the most challenging for me to write. It is very difficult to put my arms around how I feel right now and even more so to find the right words to express it.

Today, my youngest son was diagnosed with Autism Disorder.

C is 19 months old, so the diagnosis is "provisional". This means that his "label" may change (within the ASD umbrella) as he develops over the next year or so. But the diagnosing clinician, who has assessed around 1,000 kids during her career, left no room for doubt as to whether or not he is on the spectrum. Both the results of the ADOS and her clinical experience paint a very clear picture.

What is not so clear, and what is so difficult as a parent of a child with autism or any number of other developmental challenges is what C's prognosis looks like. I have spent a lot of time on this blog writing about Positive Outcomes, and I can't help but dwell on the mercurial nature of that subject on the day my son was diagnosed.

Of course, we knew this about C before he went to Children's Hospital today. We knew, but we didn't know, if you know what I mean. We have seen all kinds of indicators over the past 6-8 months. At the same time, we also saw things that would indicate he is not autistic. What we, as parents, lacked is the clinical experience and the lack of bias that a professional can provide. For this reason, we have been counting the days to August 15 so we could receive a confirmation or denial of what we had been observing.

I've got some more thinking to do before I write much more on this. Feel free to comment any way you'd like on this - I welcome your thoughts and insights at this time.

21 comments:

budbud's mom said...

Honesty is the best policy, talking about positive outcomes and strengths, and the good things that come with an ASD diagnosis does not conflict with trepidation that someone you love will also face added challenges, different than those of an NT child.

I"ve been there, and as you know, it is a step that all pass through :)

Steve D said...

Thanks, budbud's mom. I appreciate the sentiment, and I agree.
I happen to be passing this step a second time in the role of parent. Much to my surprise, it is not easier the second time.

Club 166 said...

C is still the same son, and you're still the same great dad.

He'll be different than your other kids, and the eventual outcomes for all of your kids is yet to be determined. But with your loving support, I'm sure that they will all be fine in their own way. Which, of course, doesn't mean that they all won't have their challenges. But don't forget to enjoy each day.

Joe

Camille said...

It's a harsh world in which to be autistic much of the time, and some times it's harder to be the parent of an ASD kid than a typical kid, but on the other hand you also get a "mazel tov". Not to be too glib about it, but there are fab things about autistic people (as you know) and you and the rest of your family will get to know what those specific fab things are about your youngest.

I hope this makes you smile.

http://autisticbfh.blogspot.com/2007/07/welcome-to-italy.html

Camille said...

The URL got cut off,
Welcome to Italy ABFH's essay.

Do'C said...

Hiya Steve,

I certainly won't claim eminent wisdom on the matter from a parental perspective, but I feel fortunate enough to know you personally to hope you don't think it out of place to quote my blog from "back in the day".


There is no right and wrong in how you first hear this. It ain’t winning the lottery to many, but that doesn’t mean it is a sentence to a life of misery by any means either.

It is a curveball - period.

Many curveballs become homeruns.
The ball is already on the way, all that matters now is what the hitter does.


I appreciate you writing about your thoughts on the subject, and look forward to more if you add to it.

Camille,

I love the "mazel tov". You are my second-favorite autistic person in the world - sorry, blood is thicker than water ya know.

isles said...

Baby C is in good hands with you. Who knows what challenges you may or may not have - but you'll approach them with a level head and a loving heart and all will do fine.

Bev said...

I second what Isles said. C. is fortunate to have been born into the D family. My love and best wishes to all of you.

Niksmom said...

"...keep at the very forefront of our thoughts and efforts that we are obliged to do all we can to ensure the best possible Now and Later for autistics."

A very wise blogger friend recently wrote those words. I have the utmost faith that you will do exactly that. C is so very young and his brain very pliable/plastic at this point. Continue giving him the best possible now and reaching for the stars; he will grow and change in ways you cannot predict —as you already know. Focus on his strengths and help him use those to his utmost.

He's already way ahead of the game compared to many kids his age with the diagnosis; he's already got you and your family in his corner loving him and willing to do what's in his best interests.

Sending warm thoughts.

Jen said...

Steve-

I can't imagine hearing the diagnosis for a second time- I was lucky that my triplets were all diagnosed on the same day, so we just got started on our journey and that was that. I don't think that there's a proper way to process and express your feelings right away.

When we did get our diagnosis (at 20 months), my first overwhelming feeling was one of relief, because we now had something to work with. (Followed of course by sadness etc- I knew nothing about autism at that point other than Rainman).

I don't believe that there is anything wrong mixed emotions when you are getting used to the idea that your child is going to face additional challenges, and no matter how much I love my kids I do still worry about their future, find it difficult to deal with the lack of acceptance of them etc. My "problem" isn't that my kids are autistic, it's the fact of all of the extra challenges that they face from the world because of that.

I think that it can also be intimidating for a parent experienced with autism to realize that you now have more than one child who will benefit from a lot of extra time, therapy, doctors' visits etc. I wouldn't trade my children for anything, but I've got to say that just scheduling everything was and is an ongoing challenge for me (it's a lot easier now that I'm not a single mom any more.) I also had and still have worries that I can't do everything for multiple children that I could for a single child, and that's not always easy to deal with.

You already know all of the fantastic things about autism and autistic people (you've proved that time and time again through your writings), so give yourself a bit of a break if you have some mixed emtotions right now. You're lucky to have gotten C diagnosed so early, and he is very lucky to be a part of your family.

abfh said...

C is fortunate that because of your efforts and those of other advocates, the world in which he grows up will be more accepting than it is today.

Mazel tov from me also.

Steve D said...

Thank you all for your thoughts and well-wishes. I'm not sure I can adequately express how important your words are.

Thank you.

Do'C said...

Hi Steve, I've done a little more thinking about this post, and I'd like to make a
Video Comment.

No, I didn't drop acid, and am not advocating that.

No, I'm not advocating any particular spiritual beliefs.

I was looking for a way to discuss the parentaldelic experience without plain text.

Dave Seidel said...

Best of luck, Steve. I know you will all do well, and you know what you're doing -- as well as any of us parents ever do.

Liz Ditz said...

Dear Steve,

I've been thinking about you and your family since Friday.

I'm at the other end of parenting, in two senses. Sense one: my youngest is 19. Sense two: my kids are MOL neurotypical. But each one has struggled with....issues. Big issues. The one who struggled the most is now firmly planted in healthy adulthood (and is an awesome parent). The tears and guilt I experienced over that child's struggles are just a dim memory -- kind of like my memories of childbirth.

I don't know if you read Kristina Chew's blog regularly, but I'd like to recommend today's post:

Olympic Musings, Autism Style

This is pretty pessimistic thinking of course, and not at all how Jim and I see our life with Charlie. I think I’m a mom who’s hit the proverbial jackpot for the proverbial gold: For the zillionth time, life raising an autistic son ain’t easy. But everything, absolutely everything, is better—shimmers gold—thanks to a boy named Charlie.

Anyway, from my family to yours: like Joe said, enjoy each day.

Steve D said...

@ James -
The video is meant to imply confusion, lack of surety, and that pretty much captures the feeling. Already today, though, our pragmatic side is gaining traction, and we can begin to focus on whatever it is we need to do to support C.
Thanks.

@ Dave and Liz -
Thanks for your thoughts. Liz, I do think it is important to recognize that challenges come in many forms, and are not always accompanied by a Dx from Children's Hospital. I'll check Kristina's blog now (its one of my favorites)

notmercury said...

Hi Steve,
I don't have any deep words of wisdom to share and I don't know if there is anything I can tell you that would make this news any easier to digest but you know that I've been through most of this myself. It's not always easy to deal with two kids on the spectrum but I wouldn't say that it is twice as hard either.

I watched a movie called "The Kite Runner" last night which left me thinking about how it must be for a child to leave a war torn nation and move to a country of great wealth and freedom, like the US.

I'm sure it must be incredible for a refugee to see all of the incredible things this country has to offer but it must be incredibly overwhelming and scary at the same time. I briefly imagined how rewarding it would be to adopt a child like that and guide and protect them as I assured them that they are safe from harm here in their new life.

Then it occurred to me that I already have kids who are scared and sometimes overwhelmed to be living in this place where there is so much to see and learn.

I'm not saying I think I was appointed to be their guides in a strange land or that this is part of a divine plan or anything, only that I need to remind myself that I am fortunate to be able to provide a safe and nurturing environment for two children who are in turn more fortunate than most children in the world.

They may not have the life I would have wished for but I will always do my best to grant any wishes they may have.

VAB said...

It seems that your excellent parenting skills and your wealth of knowledge are going to be of even more use. C is very lucky to have such parents.

kristina said...

Steve, I know I'm coming to this thread late---i read your post right after it went up and then had too many thoughts. Charlie's our only child, but how often have I found myself saying "what if" and "what if we saw X"...... I knew that if we had another child on the spectrum, we'd be know so much more about what to do, but it was daunting to think of having to go through everything again. On the other hand, I realized that we know so much; a huge difference from when Charlie was diagnosed.

You've done so much with the conference and your thoughtful postings and more----am sure these can help. And we're all here, looking forward to your next post, and cheering C and your family on, with high-5s and hugs, and lots.

Sharon said...

Hi Steve
I'm only reading this for the 1st time. My thoughts are with you and your family as you face a new twist in your path. I love to read this Dad's opinions, and think like others have said, that C. is lucky to be part of family D. He has a great dad, a lovely mum (from what you've written) and a couple of cool brothers, one of whom will have a particular bond with him as another autistic person.

Yes, we don't know how they'll turn out or what extra help they might need compared to typically developing children, but we don't know anything about the future really.

So congratulations. You're going to have the joy of twice as many fascinating perspectives on the world!

Laura said...

Wow. That's heavy news.

My son has the ultimate borderline dx, so if you ever think you're going mad, please feel free to email me laura_plaut@yahoo.com I've spent the last six months contemplating the stability of PDD (or the lack thereof), and prognosis. btw I'm still remarkably confused. But my confusion is more evolved.

Best wishes.