Saturday, December 27, 2008

Life with Adam

I am so excited to start a new series of posts. As I looked around at all my friends I realized I fraternize with some really neat ladies who have some wonderful talents and I wanted to figure out how to get their wisdom out there to share with my blogosphere. So I have started a series of posts which consists of email interviews with my friends all over the map. I send them an email with interview questions, they respond with the questions answered and I post the interviews here for all to enjoy. Now my only remaining challenge for this project remains naming this form of blogging - bloggerviews? interblogging? I don't know - you tell me!

In the meantime I am thrilled to begin the series with an email interview I conducted with my friend Megan. Megan has a son, Adam, who has autism. I have so much to learn from Megan about parenting a child with autism. She is so much more patient and creative with Adam's behaviors than I have ever been with Philip's. She is one of those naturally smiley, slightly off-beat personalities that comes along once in a while as a rare treasure. You can learn more about Megan by visiting her very funny blog. In the meantime, enjoy her interview!

What is Adam's specific diagnosis (if he has one) and when was he diagnosed?

Adam's diagnosis is PDD-NOS. He was first diagnosed at Kennedy-Krieger when he was 3 1/2. He had another diagnosis of PDD-NOS recently when he turned 6.

Tell us about Adam. How old is he? What's his personality like? What does he love/hate?

Adam is a very sweet 6 1/2 year old boy. He is kind and obedient. He has excellent self-control and is never rebellious in a naughty way, but he does struggle with the obsessive-compulsive tendencies that autistic children have. He is intelligent, being blessed with a nearly genius-level short-term memory. However, he scores in the mental-retardation level in areas of language. He is verbal - very verbal sometimes, but converting thoughts into words can be a real challenge for him.

Adam was an easygoing baby, but became more tense when he got to the age when he needed to be learning language. He loves order, rainbows, maps, computers, and any Nintendo games featuring Mario. He hates disorder, any light touch (like someone playing with his hair, rubbing his back, etc,) seeing his peers acting disobedient, and milk.

What therapies, diets, special interventions, etc. have you used to help Adam? Is there any one thing that has been the most helpful for him?

Well, as far as therapies, he was in Infants & Toddlers from age 1 1/2 to 3. Then he was in ECI until he was almost 5. From age 5-6 he was receiving services from Community-Based Services. In all of those instances, he received speech and occupational therapy. Essentially, whenever the county would offer a service, we'd accept. But the only service we've gone out of our way to get for him is behavioral. He has been seeing a couple of truly wonderful behaviorists at Kennedy-Krieger for about 2 1/2 years. I would say that the help we've received from Kennedy-Krieger is the most helpful intervention Adam has had. The behaviorists have focused on helping us as parents learn how to handle Adam, rather than just helping Adam themselves and then sending him home with us. That has been invaluable.

As far as diet, we have tried variations of the gfcf diet, but have seen little effect. Around age 4 he began refusing dairy, and we followed his lead there. It's one thing when a kid refuses to drink his milk, but when he also refuses ice cream, you start to think there may be a legitimate issue there.

Also, we have had a longtime suspicion, for various reasons, that Adam is hypoglycemic. It is very hard to prove hypoglycemia in children, and especially in Adam who is nearly impossible to take blood from (not only does he throw a fit, having no comprehension of why he is being poked with needles, but he has unusually thick blood that does NOT want to leave his body.) But we have seen that keeping him on a hypoglycemic diet does wonders for him.

Beyond that, we have educated ourselves on ABA and other therapies/parenting philosophies etc for autistic kids, and use what seems helpful. Most helpful: visual aides given and ideas suggested by the Kennedy Krieger folks and his ECI teacher. Least helpful: putting him in a private preschool with a teacher who was not educated in handling PDD kids was a much bigger mistake than we could have imagined.

What is the most wonderful thing about Adam?

His laugh. Adam has a hearty laugh that comes from deep down in his belly. When something really tickles his funny bone, there is no suppressing that laugh, which is sometimes a problem, but it always makes me smile.

What is the most embarrassing moment you've had with Adam?

Hah, this is a question that all mothers of autistic kids love to answer! There are almost too many to choose just one, and of course more than a few take place in church. A few months ago, he approached some teenagers at my dad's church who happen to be African-American and enthusiastically said: "You're so brown! I love brown people! I just LOVE brown people! I want to be brown!"

How does Adam's autism affect his sibs?

Adam has an 8-year old sister and a 2-year old brother. Both of his siblings are "typical" and are very verbal kids, so it is wonderful for Adam to be sandwiched between those two. We always say that Adam's best therapy is his siblings! As far as how Adam affects them, for Michael there isn't much effect. Michael, being only 2, doesn't register anything unusual about his brother. They are good playmates, and in many ways are well-matched to play together, developmentally right now. I assume that in a few years Michael will begin to find Adam to be childish and difficult, but for now, they are on the same level in many ways.

It is harder on Hannah. She is kind of isolated in her role in our family - oldest child with no one to play with much of the time. She is old enough to be embarrassed by Adam's antics in public and in front of her friends - when he went through the phase where he took his pants off all the time, regardless of where he was at the time. At the same time, Hannah is very mature for her age, which of course is in great part due to Adam. She has developed patience, humility, obedience, and a sense of responsibility and charity far beyond her years.

Have you changed your parenting style to accommodate Adam's emotional needs?

ABSOLUTELY. Our first child, Hannah, was such an easygoing, eager-to-please child, and we mistakenly took credit for how well-disciplined she was. Well, we did everything you are supposed to do - be consistent, read aloud daily, limit TV time, time-outs rather than spankings, whole-grain bread, etc. - and it worked! And when you begin congratulating yourself and seeing child development in that way, you also allow yourself to assume that poorly-behaved kids must be the result of poor parenting. Or at least, we assumed that, with our pristine, precocious child. Boy, were we in for a shock when that sort of parenting didn't work at all with Adam. Adam simply cannot be disciplined in the way a typical child can be. This was especially true when he was two and three years old, and we had no idea what we were up against or how to handle him. Scolding was met with piercing screams, and his vocabulary was so poor that he simply did not understand what we wanted. It's rough. It's rough because there is a generally accepted way to discipline typical children, and it is to a degree pretty intuitive. But with autistic children, they are as different as snowflakes, and their needs are couldn't be more diverse. No one can tell you how to raise your autistic child - handbooks can't help, and each answer tends to be frustratingly counter-intuitive.

What is the hardest thing about parenting a child with autism? What is the best thing?

The isolation. I really like the analogy that parents of special-needs kids tend to use about the vacation - that having a special-needs child is like planning to take a trip to Paris and you somehow end up in Sweden instead. All of your friends have been going to Paris, and Paris sounds really great. You have planned to go to Paris for awhile and you're all set to go. You've packed for Paris and the next thing you know, you're in Sweden. Now, Sweden's nice. It's very pretty, and you have a nice time, but it's not what you expected, and it's not what you planned for. You have to scramble to rearrange your plans, and you do your best to enjoy Sweden, despite your disappointment that you've missed seeing Paris. When you get home, no one is interested in hearing about your trip to Sweden - they all just want to share stories and pictures of Paris. Still, you are glad you got to see Sweden; you wouldn't exchange that experience for anything. In fact, you think your friends are missing out on something good, when they overlook Sweden as a good vacation spot. Still, you can't shake the feeling that you would have liked to go to Paris.

Having a special-needs child is terribly isolating. When Adam was born, I had a group of mommy friends with babies the same age as him. And as they grew, it caused me so much pain to see mine not developing normally as theirs was. I distanced myself from them - not wanting to see their "normal" kids. My friends couldn't do anything to help. Just their normalcy - the fact that they were not touched by autism - was a source of pain to me.

Initially, there were family members who thought we were wrong - who argued with us about Adam, saying we were imagining a problem that was not there, or that he was simply not being disciplined to control himself well enough.

At the same time, Dave and I had an aversion to the idea of finding a support group or connecting to other parents of autistic kids. Every autistic kid is so different, there really is no common ground - no reason to meet someone and forge a friendship on the basis of a common diagnosis, if our experiences are in no way alike. And what would we do? Mope? No thanks.

So there really is a feeling of isolation, which, though it has lessened with time, as we have learned to handle Adam, and as Adam has matured and become easier to handle, is still painful.

How has parenting Adam changed you?

Well, parenting changes anyone, of course. But the most obvious way that parenting Adam in particular has changed me is that I have learned not to judge other parents. I've been in enough situations in public where Adam was out of control, and must have appeared to be a terribly bratty child, when in fact he was having an autism-fueled meltdown, that I have learned that nothing is necessarily as it appears to be. And that mom with the screaming bratty kids might not be a bad mom - she might be struggling with autism in her own family. That mother feeding her kids junk food or losing her cool and yelling at her misbehaving kids, or doing any number of socially unacceptable things - she might just be at her wits end and trying to cope with an autistic child the best she can with whatever resources she has at the moment. There have been so many times that I was desperate for some help, and all I got was nasty looks, that I've learned to offer help to those moms that I see struggling with their kids rather than judge them. It's been a hard lesson to learn, but I am thankful to Adam for all he has taught me.

Thanks so much for your insights Meg!! Now, please, run to Meg's blog and check it out!

As I formulated my questions for Megan I realized that this particular line of questioning would be really interesting to send to all my moms of kids with special needs (I run a support group for moms who homeschool their kids with special needs) and I found myself wondering...How would *I* answer these questions? How would my answers be different for each child in our family with special needs? So hopefully you'll be seeing these questions a lot more with responses from all those other resourceful moms out there! In the meantime, I am anxiously awaiting responses from other areas as well - such as our church's choir director and our newly illumined catechumen. I'm so excited!


DebD said...

This was so wonderful to read. I have been praying for Adam for several months after a brief conversation with his grandma. It's so nice to hear about him and his mom.

Anonymous said...

Well done interview! That was really cool and insightful to read.