Wednesday, June 11, 2008

Drained

What a week.

I don't even know where to begin.

At the beginning, perhaps?

Unbeknownst to me at the time, this story actually begins on the evening of May 29th, so that would probably be a good place to start.

I was at the computer, as is often the case after the kids are in bed, and was searching specifically for more information regarding speech delays in toddlers. We've been concerned for a while now about Meghan's limited vocabulary, but especially so after visiting with our two year old nephew last month. So, at some point during this cyber quest, I came upon a page regarding Autism Spectrum Disorders, and as I scrolled down through the page, one particular paragraph seemed to leap right off the screen at me:

"Some children and older individuals spend a lot of time repeatedly flapping their arms or walking on their toes...Repetitive behavior sometimes takes the form of a persistent, intense preoccupation."

I couldn't believe it! A sickening sensation of dread snaked it's way up through my belly and gripped my heart, rendering me slack jawed and speechless as tears sprang to my eyes. Numbly, I got up from my chair and silently summoned Darren, who was watching TV in a different room.

"Babe," I commanded, ushering him into my vacated seat. "Read this. It's as though somebody has written exactly about Dylan!"

Holy cow.

In a dizzying rush, every quirky little "habit" that Dylan has exhibited since toddlerhood came speeding to the forefront of my mind. The way he hops up and down and "flaps" when he's really excited; his near constant toe walking that had me resorting to threats ("Stop walking on your toes or you'll ruin your feet! Do you want to end up needing surgery to fix your bones?"); his tendency towards meltdowns when he's angry or frustrated; his intense focus on drawing; his need to have a pile of books stacked just so at his bedside every night...

All at once, it was as though many pieces of what I hadn't even realized was a puzzle (this was simply our life) fell neatly into place. I was stunned, to say the least. The more we read, the more convinced Darren and I became that we'd be doing Dylan a great disservice if we didn't at least have him evaluated further. The next day, Darren called our pediatrician's office and arranged an appointment with their behavorial health specialist.

We met with her on Monday, and, after a series of questions and observations, she agreed that Dylan most likely has "a high functioning form of autism called Asperger's Syndrome." She has made a referral to an Autism Diagnostic Center in Albuquerque, and immediately after leaving her office, we headed to the nearest bookstore and bought The Everything Parent's Guide To Children With Asperger's Syndrome and The Asperger's Answer Book. One of our dearest friends came over that night and loaned us her copy of Look Me in the Eye: My Life with Asperger's. I haven't read it yet but Darren is devouring it. I'm working my way through the first two, fluctuating alternately between varying degrees of optimism and disappointment. We've got a lot to think about.

In other news--yesterday, we had an in-home evaluation (by a private nonprofit organization) of Meghan's speech and cognitive and motor abilities, which was actually a very fun and enlightening experience. Darren and I had met with an outreach coordinator at their offices yesterday morning and were quite impressed with the friendly, family oriented services they provide. And based on their findings, Meghan does display a ">25% delay in the area of expressive speech" (although all other areas scored, including receptive language, problem solving, social, and motor skills, were right on target for her age). Their recommendation is weekly, one hour speech therapy sessions to encourage verbal imitation, which (I think) can also be held in our home. I'm excited. I can't wait to get started!

Also noteworthy: my mom and her husband flew back home to Florida this morning. I cried a thousand tears last night in great gulping, silent sobs, leaving me with a monster headache and red scratchy, swollen eyes. Yep... I'm a wreck! I can't even think about her leaving without that horribly empty feeling of loneliness creeping back in. So, okay! Enough of that! Mom, I miss you terribly already. I missed you even before you were gone.

Friday night will be my first night back to work since Kristen's birth. But I've been away for so long (12 weeks) and spent so much time up there in a non-official capacity while Kristen was in the nursery that I'm afraid it will feel very weird to return as an employee. Not to mention, I've gotten very used to this whole not working thing and I'm sad to go back. And I hate the thought of leaving Kristen, even though it will only be for six hours at night when she and everyone else will be sleeping. And...never mind, enough with my whining.

Work will be fine, Kristen will be fine, we're fine, everything will be fine...

...If I repeat it enough, do you think I'll start to believe it?

10 comments:

Frances said...

Wow, what a shock - but you are admirably seeking knowledge to better appreciate this interesting part of who Dylan is. I hope you can also find fellowship/support with other parents of children with Asperger's.

I flipped through a copy of Look Me in the Eye and was NOT impressed. However, I highly recommend the title story in Oliver Sacks' An Anthropologist on Mars, about a brilliant woman with Asperger's. I've retold her story many times, it intrigues me so much.

I pray that Meghan's sessions prove very fruitful, and that your time at work goes by quickly.

Melissa, this is kind of off-topic, but I'd be very interested to know what you think of The Business of Being Born if you've seen it. David and I watched the copy I brought home from the library this week and I'm eager to hear Catholic moms' perspectives on hospital birth protocol (especially from you, since you work in the field) vs. home birth.

Shannon said...

Hi Mellssa-

I'm right not in grad school for speech-language pathology and wrote a paper on "late talkers." I also recently just took a class on autism spectrum disorders and can only imagine what you're going through. The internet can be a scary place too because there is often misinformation there.
Further, I own Look Me In the Eye and think it's a good read in that it gives you insight into what a person with Asperger's deals with...but not every person on the spectrum is the same as the book's author.

If in fact Dylan does have Asperger's, he can be an extremely successful, happy boy (among so many other things!) My sister has a non-verbal learning disability--NVLD (which some say closely resembles autism). The research being done on the brain differences in these individuals is quite intriguing. My sister has done really well and has learned to compensate for a lot of her differences. She is also seeing a speech-language pathologist now who specializes in NVLD, which has helped her immensely!

I don't know what help I can provide but if anything, I'll be praying for you lots and lots.

You're a wonderful, beautiful mom and God will hold your hand though every step of this process.

Jamie said...

Wow! You have a lot on your plate right now. I will pray for you and all you are going through.

Just remember (as I'm sure you do) Dylan is still the same wonderful little boy. Now, knowing what you know, you can probably be more patient. (not that you were not already) Amazing how God led you to read that article though, you were meant to read it.

I have heard of this more and more lately. I think it is becoming much more common.

Lillian said...

Melissa,
I cried along with you while reading this post. Jamie is right. He's still the same little boy you love. You can now begin to understand him better. What a lucky boy that you've decided to homeschool. And what a grace he's been given to be who he is. God has made him and has given him such beautiful talent. This, too, is a gift. Hard to see how but it is. Some of the most talented and holy people in our world were special and unique. Dylan is just so blessed to be in a home with such loving parents who can foster his talents and taylor his environment to bring out the best in him.

Praying for you and your dh.

Jill said...

I haven't been able to stop thinking of you since I read this post. I was going to call you but I hate to be disruptive with all you have going on (plus the time difference doesn't allow for too much of an overlap as to when I can call). I was going to try to write a nice comment, but I don't have any great words. The others have said it well.
So, I offer you my prayers and thoughts.

simplycatholic said...

Melissa,

That is a lot to be hit with at once. WRT the Asperger's I agree with others that said you still have the same little one you did before. It will be ok. There are a lot of excellent resources out there and it sounds like you are already tapping into them. You have my prayers as well.

Jen said...

Melissa, I've been meaning to comment here for a few days now, and just haven't had the time. First, I want to say I don't know of any better parents for Dylan to have than you and your husband. God have him to you both for a reason, and he is still your little boy, no matter what. You all are taking the right steps for him. I know when we had Keith tested at the Kennedy Krieger Institute this past Feb, I was beside myself. But, God knows the whole picture, so trust in that. I will offer up my Holy Hour for you and your family tonight.

He who wears the most black wins. said...

I am gone for far too long. SO much has happened in so many of my dearest friends' lives. I think of you all the time and, this evening, as I was sitting at my computer, I decided to check in. Needless to say, I was shocked at all I had to learn.

I love you and want you to know how many prayers I offer up for you. Dylan will be okay. You and Darren and the girls will be okay. God has you right where he needs you--looking up.

I will be back soon.

SpeechGuy said...

I know that feeling in the pit of your stomach. My wife and I had it too about 10 years ago in regards to our son. We, unfortunately, went through the alphabet soup (ADHD, Bipolar, Clinical Depression, etc...) before Asperger's came along and helped tremendously. (Aspy as a diagnosis was only 4 years old back in 1998) My son is now 14 and is entering public high school and with continued vigilance a happy time of it too.
Also as a practicing SLP of 18 years I am so happy to hear that you find in-home early intervention services exciting. I used to provide that service about 7 years ago in a different location and had an absolutely wonderful time teaching both the child AND the parent. Good luck to you both in your therapy sessions.

Patricia said...

Melissa,
I just happened to find your site through the Catholic Moms webpages. I happen to have a 13 year old son with Asperger's. All I can say is that he is such a special gift to our family, as I am sure that Dylan is to you! Hang in there. There are brighter days ahead. Just remember to see the humor. That is what gets me through the rough times. They are very special kids with bright futures ahead of them!
Blessings,
Patricia