Wednesday, February 9, 2011

Andrew and autism

I've been reading more on autism. And doing so has made me want to write more on autism. In fact, as I write this, dinner is boiling away on the stove, the kids are parked in front of the TV and I've warned Dave that I am going into hiding because I am dying to write about autism.

I've been hesitant to write about autism for several reasons. One major reason is that I worry about my writing's effect on Andrew. I worry about him finding these entries and being upset by them. I worry about his future classmates finding these entries and teasing him. I'm not sure what to do about that right now, but it's definitely on my mind.

I'm also worried about the various responses people will have. I worry that people think that I'm trying to find something to blame Andrew's sometimes-strange behavior on. I worry they think he's not really autistic and that I am exaggerating, trying to cover up my inept parenting. But I also worry that people see Andrew more clearly than I do and what is remarkable and insightful to me seem dull and obvious to others. Basically, I feel vulnerable.

But, I really, really want to do it. I want to face this. And I want to face it publicly. I don't want to wonder what people are guessing anymore. I just want to share and talk and write and be out with it already. Plus, I've heard from all kinds of readers about struggles they've been having with their kids, which further motivates me to move forward.

Is Andrew autistic?

Officially, no. He's not. I've been talking more and more with his Developmental Pediatrician about this. The schools that we are looking at for him, the schools that she is recommending, are for kids with high-functioning autism. She is hesitant to diagnose him, she tells me, because he's borderline. And lots of kids that exhibit characteristics of autism as young children, get 'better'. The funny thing is therapy often works. She tells me she's diagnosed kids that within a few years don't exhibit the same signs at all, and then she wonders why she diagnosed them in the first place.

We're meeting with her again soon. His Education Plan is up for review in a few months and right now he's listed as "speech disorder", which just doesn't fit at all. And might not be enough to get him into the schools that could really help him. And so she's weighing the pros and cons of giving him a more specific diagnosis.

But really, is he autistic?

I don't know. Some days I look at him and don't see anything at all that's atypical. Other days I can't believe how autistic he is. And his teachers and therapists have reported the same thing. Some days he's here. He's with us. He's in the game and ready to play and batting home runs. Other days, he's not. He's in his own world. He's in his head and mindlessly repeating lines from movies, and saying nonsense words and he can't hear anything I say. It's such a wild variance that I've tracked his diet, his sleep, his activity levels to see if I could find any clear patterns. What makes him retreat into himself? And how do I get him out?

Right now, it helps me just to think, "yes. he's mildly autistic." Oddly, it keeps me calm and helps me work with him more constructively and patiently. It changes my approach and makes me more effective.

Though, I have to say, that can be really hard.

I think that Andrew's 'borderline' diagnosis has it's own set of hardships for me. A lot of people don't see anything different about Andrew at all. But at this point, he can't learn in a typical classroom. It's just too overwhelming for him right now. And so the schools see his differences clearly. I often feel like I am juggling back and forth between people that see and people that don't. And that often feels like a tricky position to be in and one that I'm learning to navigate.

And maybe Andrew's pediatrician is right. In a few years, maybe the things holding him back now, won't be holding him back anymore. Maybe a diagnosis wouldn't fit at all and we'll be scratching our heading wondering why we ever thought he was autistic in the first place. But, I feel like, even so...even if Andrew gets to the place where the rest of us are...where he learns to cope with what is hard for him in more socially acceptable ways...and his language and social skills catch up..even so...right now people are looking at him wondering if he's autistic. Even if in the end, everyone decides he's not, this is still really happening. People are looking my son trying to decide if he's autistic. This might end up being just a brush with autism...but's a brush with autism...and for me, it's having a profound inpact.

I'm reading Not Even Wrong by Paul Collins. It's a book I tracked down after hearing Collins interviewed on NPR. It's been really, really, really good for me to read it. Honestly, there is a lot about autism that I love. Crazy, right? I mean, when I read these cases of 'autists' with their strange obsessions and quirks, it makes my heart sing. There is something absolutely endearing to me about quirky people. I love, love, love, love, love them.

And so I find myself in this tangled mess. Loving and resenting the things that make Andrew atypical. Feeling so incredibly lucky and feeling heart-pounding fear... at the exact same time.

And if you made it the end of this post: congratulations! ;) Perhaps the photos of Mississippi Mud Bars powered you through. These babies were fantastic and found in Passion for Baking, of course.

Andrew sure loved them.


Cat said...

wow, thank you for this great post. I would have read on for hours... and would love to ask so many questions that are way to long for a comment box!
What a challenge you face. I would be so upset on the days he's in his world...specially if you have seen him be in "our" would the day before. Maybe frustrated more than upset?
Will you write more about this?

Mama V said...

Well, dangit. I lost it when I got down to Andrew's sweet picture. These are tears of joy, though.

Love you, Andrew.

Love you, Mama.

Carol said...

I admire your bravery. The very reasons you mentioned about being aprehensive about doing this blog, I have also felt deeply and it is those same feelings that have kept me from sharing about my daughter. Almost exactly in the same boat as you and Andrew. My daughter is 13 and has never had 'the diagnosis', but displayed many autistic symptoms in her infancy and young childhood. She has had many tests but always slipped through the diagnostic cracks. Many of the tendencies like echolalia, arm flapping and other quirks have fallen away. I am thankful. She is now considered 'mildly cognitively delayed'. She still struggles in school, primarily with reading comprehension and being self-directed. Her vocabulary is delayed, but when you consider what a late start she got, it's no wonder. Unfortunately, this affects her socially, but she is in a small private school and where she does not have alot of friends, she does, though, have a close knit group of about 2-3 girls that are very compassionate and patient with her. It took her a long time for this to happen though. We have done ALOT with her over the years and boy, has she come along way!! I really believe though that she will find her way. No doubt in my mind she was affected by her 12 month MMR vaccination. NO DOUBT!! The radical change that came over her right after this horrid event will be forever, unfortunately, a part of my memory of her babyhood. Enough said for now. I look forward to reading more of your blog as we travel this journey together.

Ruth said...

A truly brave post, Robyn. You know that I'm rooting for Team Robyn, right? Even from across the Pond, I think about you all often.

Carol said...

O.k., so I've been reading more of your posts on Andrew. Wow, it's like you're writing about my life, my emotions. All those feelings about them getting older (turning 5) yeah, I've been there, still am. Yes, heartbreak. So now they call it Sensory Processing Disorder do they? Sounds so much nicer than Sensory Integration Dysfuntion. When I started on this journey, I really did feel like I was on the fringe of some new stange land that no one else had heard of or knew very little of. My daughter and I knew the language of this strange land and we were trying to teach it to people that were supposed to help us! Too funny really, but again, heartbreaking. We too, took a sabbtical from school for Sheena's grades 2 and 3. It was good, but at the time I had all the same concerns you did about socialization. I chalk it up to this: you can't do it all. You have to take care of what's really important at the time and at the time it was her emotional care that took precedence. We also made some kick-butt headway on her reading. Like you say, homeschooling is tailor-made education. Where were other mother's like you when I was first going through this? Where was I when you started out? I should have been blogging for you! I feel like the dam has opened up. I could write forever about Sheena! I have to say God has sustained me through this. Many valleys, many tears, but hope has kept me and I do see light. Robyn, you are an amazing Mother! Your little boys are blessed to have you as their Mom. You are doing so much and it's probably your time and love being poured into Andrew's life that has brought him this far and will carry him into the great things that his future has for him. He will turn out great!

JIW said...

Robyn, I love reading about your journey with your boys. I think because I'm adopting that I think about what sort of child I'll end up with all the time. I wonder what their challenges -- we all have them -- are going to be and how I'll help them cope, how I'll cope and guide them. I think about how I have no say -- not even a genetic say -- in their being and hope I'm up to the task of raising a small person to be a good, healthy, productive big person.
Very ramble-y, but I think Andrew and Isaac are so very lucky to have you as their Momma. You are so thoughtfully raising two young boys and I hope I'm as up to the challenge as you seem to be.

Cheryl said...

You are a wonderful mother and a very brave person. You deserve the best. I admire the way your celebrate the everyday things. Better things are coming your way. I wish I could tell you when!

Dave said...

"What a challenge you face. I would be so upset on the days he's in his world...specially if you have seen him be in "our" would the day before. Maybe frustrated more than upset?
Will you write more about this?" can be frustrating, but more in a "we're trying to get out the door and I've asked you to get your shoes 15 times and you haven't yet!!!" Which I'm sure is something everyone can relate to. It's just frustrating, you know? can be when someone asks him a question and he doesn't know what to say, so he quotes a movie or makes up words...I feel my face go red. And...I sort of worry what he'll do next. I get this sense of "oh...he's going there" and then jump into rescue mode to pull him back to feeling more settled.

But...I usually don't feel frustrated in the sense of "yesterday you were normal! and today.... ack!" I guess I don't stop to think about it like that...I just jump into "fix it!" mode. You know? I think that's where telling myself "he's mildly autistic" really helps. He's not trying to be a pain, he's just distracted/in his world/nervous.

Dave said...

Carol! Thank you so for sharing so much about Sheena! I'm so sorry about how difficult the road has been for you two. I feel like we are just beginning to see the things we'll have to face. And sometimes I feel ready to fight and invigorated by it...and sometimes I feel beaten down.

Homeschooling this year has been really nice for me to get some footing with facing the next years of his education. And also to see that homeschooling isn't that bad of an option. ;)

"I chalk it up to this: you can't do it all. You have to take care of what's really important at the time and at the time it was her emotional care that took precedence."

This was really, really helpful and clarifying for me to read. And so true! But I WANT to do it all! Dang it! ;)

"Where were other mother's like you when I was first going through this?"

Funny, because I feel nervous to approach other mothers going through this. I worry that he's not "autistic" enough to be accepted in the group. Or that he's too Special Ed. Too much this, not enough that... There is a family in our church with an autistic son and I've only recently approached them. And I'm sooooo glad I did. Up until then I only studied and admired them from a distance! So silly!

Carol, I do hope that you share more about Sheena. I am so encouraged to hear about her group of friends! That's fantastic!

Cat said...

frustration and embarassement? Been there, done that (actually, am there, doing that!) with my 5 yo...

Goes On Runs said...

i made it to the end of the post and all i have to say is..... i love you. thank you for posting. thank you for sharing your heart. i think it is a glorious mess in there.... being redeemed every moment. it is amazing to think that you are becoming more like jesus through all this.... and you get to love on that guy in the process. i'm with mama v on those tears of joy..... hang tough. you have a beautiful family.

Carol said...

Robyn, could you please post the recipe for those delicious looking Mississippi Mud Bars?