xmas 2013

xmas 2013

Thursday, September 2, 2010

Autism is not all bad

So, we are FINALLY (it seems we've been waiting forever) about to start B's behavior therapy. We have no idea how successful this will be but as we aim for "best outcome" and "recovery", I am thinking about all of the things that make the little guy who he is. And yes, these are all at least partially a result of his autism but I have to say, there are some things (quite a few in fact) that, if "recovered" from, I will truly miss.

#1. The laughter. Now, of course I know that B will always continue to laugh no matter what. But the way he laughs now, that all-encompassing, doubled-over, drunken laugh that comes out of nowhere and lasts for an insane amount of time? That I will miss. Seriously - I have listened to him laugh in his bed for HOURS at a time and even though he really should be sleeping, it always brings a giant smile to my face. I would bottle it if I could.

#2. His babble. You know how absolutely adorable it is when little ones start playing with their voices? They truly seem to believe that they are talking even though it sounds like a very bizarre foreign language. B's language has always been particularly cute in my opinion. It's almost musical. I have a lot of videos of him "talking" because it is so stinking cute and I just knew that it was going to give way to real words and we'd miss it. Little did I know. When he was initially observed and the ladies pointed out to me that this was nonsensical self-stimulatory behavior and not an effort to communicate, I was crushed. Had one of the things that I so loved about him really been a symptom of a disorder?

#3. His baby qualities. These are twofold. First, as soon as I pick him up (which he loves), he snuggles in and lays his head against my neck. It is the sweetest, most wonderful thing. If only he weren't practically as long as I am and over 30 lbs, I would carry him around all day. He and I both would love it. But oh my aching back. Second, almost every day - I rock him to sleep. He lays up against me and snuggles in while I sing or hum songs until he falls into lala land. The memory is a tricky thing when it comes to ages & stages, but I know that his big brother stopped falling asleep on us MUCH earlier in life. We took away his rocker with the arrival of a big boy bed at age 3. I remember that we were sad that we couldn't sit with him and read before bed but certainly not that he would no longer be rocked to sleep. I doubt there are many almost 3-year olds who still allow themselves to be babied this way.

#4. The lack of sibling arguing and fighting. I have enough friends with kids to know that this is a HUGE struggle in most homes. I can only imagine what it would be like here with 2 "typical" boys only 15 months apart and interested in the same toys. I would be referee - that's for sure. In our house, it goes mostly like this - Big and Little brother have different primary interests which keeps one mostly playing with cars and the other with trains. However, when they do want the same thing, B-man will either cry (in a sad, tortured way- not in the annoying whiny way) or he just moves on. Again, this isn't a good thing - B should hold his own and his big brother shouldn't be able to play at home any differently than when he has to share with playmates but it does make my life easier.

#5. Along the same lines (and I hope this doesn't make me a bad mom), I can not imagine having the CONSTANT questions, talking, complaining, negotiating, mommy/mommy/mommmmmmmy-ing that my first son exhibits. Do not get me wrong - I LOVE and adore my big boy to bits and pieces but he.never.ever.stops.talking! from the minute he gets up until the minute he goes to bed. It is exhausting and if it was coming at me from 2 directions, I might just lose my mind.

#6. Tantrums or lack thereof. My little one really doesn't tantrum. He cries with big crocodile tears like his heart is breaking sometimes but he does not throw himself on the ground kicking and screaming because someone looked at him funny or some other grossly exaggerated perceived injustice. I've seen some doozy tantrums from my son and from many a 2 and 3 year old and B just really hasn't ever had one. I know now that this is because we keep him in his comfort zone. He's very easy-going and it's pretty much second nature to keep him happy so that's what we do. I anticipate his needs and I meet them before he ever really has a reason to be upset. This is going to be a huge change as we undergo constant therapy where he has to come out of his comfort zone. I anticipate tantrums like I've never seen before and it's one of the things that scares me the most about this next step. But - tantrums are good - they are a normal, healthy part of development and we all live through it. Someone remind me of this later.

#7. Finally, this is one that I don't expect will ever go away but it is something I consider to be a blessing of autism. And that is that we celebrate and appreciate every single little accomplishment or development in an intense way that is just different than with typically developing kids. Hard to believe, I know. Let's face it - we all think our little offspring are amazing and do cuter and smarter and better things than any kid who has ever come before them. But when your kid still isn't talking and is almost 3, an attempt at something as simple as copying a one syllable word you've said is H-U-G-E.

Now, on the flip side - there are many, many behaviors and traits that I DO want to see change or simply go away and that list is growing. But it is my fervent hope from every part of my being that we will see the following 3 results:

#1. Please, please, please let him talk and understand what is being said to him. Some kids with autism are forever nonverbal. I can't bear this thought. I just feel in my heart of hearts that he has it in him. I long to hear his voice and to get to know him in a way that only comes with communication.  We have waited SO long to hear him say Mommy and Daddy.

#2. I want to see my kids play together. Yes, this goes against my 4th point above, I know. I will take the fighting - really I will (again, remind me later). I just want my boys to have a relationship. I want them to entertain each other instead of always needing me. I am not naive enough to believe that they will be each other's best friend but sibling relationships are important... isn't that one of the reasons we all decided to have more than 1?

#3. I want B to take an interest in the world around him. He is not stuck in a sad, isolated world of his own (as I thought autism meant) but he does not participate in things the way he should. A recent example... I took the boys to an aquarium. B never cried or complained but he did NOT want to get out of his stroller and pretty much was just along for the ride. He could've been anywhere - not one single thing piqued his interest. It's a heartbreaking thing to watch. I am painfully aware that I sounded and looked like a crazy woman "LOOK at that FISH - wow - have you ever seen anything like that. Look OVER THERE. B.? B.?" You get the drift. I want him to have fun in the way that other 3 year olds do. My big guy was filled with wonder and delight and I want that for B too.

2 comments:

  1. Wow! You are one amazing mama! I loved reading this and I will follow your every step of the way. I'm so proud of you, girlfriend! Go B!!

    ReplyDelete
  2. You are an amazing mom, and anyone can see it when they look at those boys. Thanks for keeping those of us so far away posted on the journey. I love the laughter too. I have a feeling that is deep in B's heart and will be charming us for many, many years to come. I love you.

    ReplyDelete