Saturday, April 13, 2013

Reality Check: Alex.

(Busted by Dad. Dog isn't allowed on the bed.)

Alex is Alex.

I say that quite a bit. It's partially a reminder to accept him as is, that he is perfect all on his own, and to not compare him to anyone else because there is no one else like him. I remind myself to compare his progress only to him, where he was before vs where he is today. Sometimes, that's not so easy to do.

Sometimes, I'm reminded he's not as autistically normal as I thought he was.

I don't care about the normal of the neurotypical world, but I was hoping he fit with his autistic peers. I was hoping he was on the same... wavelength as his autistic peers. You know what I mean, like how comforting it is to say my child does this and another parent be all- oh! my child does that too! and you fist bump over your flaptastically autistic children and the solidarity you can find only in the people who are right there with you. I thought Alex was doing so great because he has some semi-useful words and I was so proud/excited that he was interacting with a dog. and yeah, that's great, I should be proud and excited. This is progress. Major progress compared to where he was. It's something to be celebrated! hooting and hollering and dance party celebrated.

(You recognize that this is all about me, right? Sometimes, that's ok. Moms have feelings, too.)

Not so much.

I hear you all tell me about your kids using sign and saying appropriate (or inappropriate) things and doing things with their siblings and all of these awesome things and I assume (I'm ashamed to say) that your kids *must* be higher functioning. They can't be like Alex if they are doing all of these amazing things. So I wonder, where are the kids like Alex?

And, here comes the reality check...

I was having coffee with some friends last night, parents of Alex's peers, the kids like Alex, and as usual I mostly sit back and listen. I love what I'm hearing. I listen to them and I think that is so great, so awesome, their kids are doing some new things and some normal-for-them-things so well! interacting with siblings, initiating interaction with parents, initiating and reciprocating interaction with peers and I am happy for them. Then comes my turn and my big news is that Alex is interacting with a dog.  ...and they're waiting for the big news. and trying to figure out at which point they should be all celebratory over Alex's skills. Which they eventually did. once they got that I was bragging about the dog because he only chooses to interact with me and me alone.

The initial stuttering reaction caught my attention and got me to thinking.

Well, not so much thinking as moping because "thinking" would imply that I can or plan to do something to "fix" it other than what we're already doing. "Thinking" would imply that I'm looking to push him more or to expect greater things from him and I'm not. "Thinking" would imply that I'm looking for ideas on how to fix my abnormal, broken child and I'm not. He's not. I am wondering just how far "behind" he is, how much of it is my fault, and just how blind does a person have to be to not see how far their kid is behind his peers?

It does encourage me to rethink what I see in him, what I expect from him, for him.

I made the decision to not have therapy outside of what he gets at school. I made the decision to use life, our life, as the tool to teach him. I made the decision to allow him to have his childhood for as long as a child should have their childhood. To run and play and just enjoy being a kid. To be messy and dirty and loud and joyous. I still feel that that was the right decision for Alex. He may not be quite as almost-verbal as I thought or be the almost-social-butterfly I saw him as being, he may not be potty trained or the most spectacular self-feeder of the century, he may not be able to dress himself, wash himself or change the channel on his TV but he's still pretty frickin impressive. Even recognizing the need to lower my expectations a bit leaves the boy at pure genius. I don't think I could have, or should have, done anything differently. I don't truly believe that my decisions have held him back. ...or have they?

I don't believe that allowing him to be a child is stagnating him.

He's making progress, he has made significant progress over the years. The boy I look at today has come a hell of a long way from the 3 year old sitting in his highchair, fully engrossed in snacking on carefully chosen goldfish crackers when the heart stopping question, "have you ever considered autism?" was asked. Since that day, he has made massive amounts of progress in many areas. He learns at his own pace, not the pace anyone else sets for him. You know he's crossing mid-line now? That he has become fully left handed instead of using certain hands for certain tasks? He totally gets non-verbal communication. He doesn't run out the front door (when it's closed). He hasn't set my microwave on fire in years. He waits in his seat by the door for the bus to come. He sits in his car seat. He notices what's outside the window as we drive along. He hasn't tried opening the car door as we're driving along...lately. He doesn't hit me or pull my hair. He tells me no. He doesn't run right into other kids. He doesn't try to pick babies up by the hair or step on them. And... Yes, damnit, he's interacting with a dog!

Alex is Alex

He may not be in the same place as his peers. He may not be quite as far along as I thought he was when compared to his peers but that's fine. I am supposed to compare his progress to him, not his peers. There's a cliché and way over used saying that floats around the autism community- "when you've met one child with autism, you've met one child with autism." I hate that saying, I really do but... it's true. and it tells me Alex is normal when compared to Alex. He does fit with his peers. even though he doesn't need to... or maybe because he doesn't need to. This may be a comfort to me but doesn't matter what-so-ever to him. He couldn't care less about fitting in, keeping up, or being normal.

He's happy as he is.

I wonder what he wants, what he feels, what he thinks. I wish so desperately that he could tell me. I want to ask him if he cares that he may or may not have friends, I want him to tell me if he sees his peers as being friends, even though he doesn't make much of an effort to actively notice them. I want to ask him if he's ok with mostly being on the outskirts. I want to ask him if he is happy with his life. but I already know because every day he answers those questions in his own Alex-typical way. He has quiet rocking, considering stares, gentle smiles, sweet hugs, happy dancing, free running, loud/excited stims, uncontrollable laughter, and he has eyes that never lie. He is happy with his life just the way it is.

He is content.

He is excited to see people. He just has to say hi, give them a hug and a smile that is pure sunshine. He has friends. He has people he cares about. He is a people person. He loves to be near people. I can totally understand that. When the kids play in the house, Alex rarely wants to be with them. If he wanted to be with them, he would be with them and sometimes does but mostly he chooses to just be close. When they play outside, they play and Alex wanders around the yard or runs and giggles. Alex doesn't interact with his brothers much because he doesn't want to, that doesn't mean that he doesn't love them. He's not lonely or shut out, he's not trapped in his own world. He sees what happens around him just fine. He just chooses to observe rather than participate. He wants to do his own thing.

He lives his life on his own terms.

He is pretty much forced to be with people in school- which is good, I guess- but at home is the place Alex can be Alex. To do as he pleases, to relax and not feel like he's being forced into some sort of pseudo-neurotypical mold. At home he is free to be ... him. He is loved and accepted as just plain him. In Alex's home, no one tells him who he should be. He lives his life on his terms, the life he wants to live and that, right there, is the greatest comfort of all. It's everything I have always wanted for him so what is there to mope about?

Still the question remains...

am I, as his mother, doing everything he needs? Is his slow progress my failure ...or our success?

Mommy Guilt?

My aunt says it is and that it's normal. I know all about mommy guilt but this... This wouldn't be such a sore subject for me if it weren't for the online community. On my page this quickness to judge another autism parent as uncaring or a failure because they don't do this and this and this doesn't exist. My people are awesome. but as soon as I step off of my own page and into my newsfeed, it's right there and it's so hard to deal with. Which is one reason I rarely comment anywhere but even if you're not the one being attacked, you see what's being said and it sits there in the back of your mind just waiting to jump out and accuse you. Then when you hit those hard spots, the words are there and you're thinking, shit! Is it my fault?

A wise woman...

I talked to my aunt about it. She had a pretty simple response, "B.S." she tells me, "You have mother's guilt, plain & simple...sorry no cure known in existence lol It's the same with every mother....what could (I) have done better...but the reality is you can only do your best & hope God grades on a curve." She said, "Unless it's proven to you, you do what works for HIM."


  1. I also believe that our kids need a place where they can just be. We have tried to keep therapy out of the house and have for the most part. We do have a homework behaviorist come 2X a week but we are almost done with that. James is allowed to just be James when in the house but as soon as we step out of the house, we hope he will slip on the society James that is expected of him. PEACE

  2. Out of everything you said, the BEST thing was that you are letting Alex be a child. He deserves to have the time to be a child as do my children (1 Aspie, 1 NT), in my opinion. You accept him for the loving child Alex is and celebrate his milestones and accomplishments, large and small. You are a mom, HIS mom. Alex needs a cheerleader and who better? There is one downfall with being a mom (again in my opinion)...a mom to any child...the mom guilt! No matter what you do, how well you do it, what time you give up, how much you give of yourself it seems mom guilt is something that comes with our title. Kind of like the worse in 'for better or worse .' You are doing a fantastic job supporting your entire family and online community...just remember to take time for yourself too...whenever they add that 25th hour to the day. -Holly

  3. "Hope God grades on a curve." I've never heard this, but it makes me feel soooooo much better!