How Did You End up Here?

A FB friend posted this yesterday.  I had been thinking about creating this blog space all weekend, but this is what inspired me to actually do it.

So HOW did we ever get here? I get that question a lot from people who are genuinely interested... and from some who meet our son and just don't understand why we have pursued services at all.  And I am always happy to tell our story, both for the sake of J and and our older son B and to hopefully give others the encouragement they need to listen to their instincts about their children.

It would make my life easy if  I could take people back in time with me to see what our youngest son looked like 1-1/2-2 years ago before and when we had just begun early intervention.  From that time, the meltdowns are what stand out the most in my mind. They would be triggered by the most random of events, or even non-events and would last for upwards of 40 minutes. During that time, I would have to keep moving him away from walls and furniture because he would repeatedly throw himself into them, while screaming as if he were possessed.

There was also the talking, or lack thereof. At 16 months, he wasn't trying to babble like other babies do. The usual 'bababa" 'gagaga"babytalk wasn't there. There is a lot you can chalk up to a child just being a late talker, but the lack of experimenting with sounds was a red flag for me, especially once it went beyond the timeframe when our late-talking oldest had started finally saying words.

It was maybe two months into early intervention and when we really started to think there was more than just a speech delay. I knew enough to quickly pick up on some concerns our Infants and Toddlers teacher saw and even though she wasn't saying it, figured that she had ASD on her radar. It had not really occurred to me as a possibility until then and my husband and I really didn't want to even consider it.

We reached a low point with it all when our son started waking up regularly at night with what at first seemed like night terrors. As third-time parents, we had plenty of experience with those, so we didn't think much of it at first. There was something different about these episodes though. Much like during meltdowns, he would hurl his little body into the walls and furniture. He would also try to swan dive from his bed, all while screaming at the top of his lungs. It was truly a frightening thing to witness, almost as if he was fighting against something we couldn't see. I remember looking at my husband one of these nights and just saying, "They're right you know. Something is definitely wrong."  Also during that period of time, the meltdowns ramped up to 5-6 a day. 

After a month or so, it ended very abruptly  and he woke up one morning, quite literally, a different child.  The words came fast and furious after that. Looking back, my theory is that that particularly trying period of time was when the connections were all happening in his brain all at once --- likely, at least partially, as a direct result of the intervention he had been getting.  I often wonder if this would have happened without it. 

The expressive speech rapidly become a non-issue, but social red flags lingered, and still do, as does perseveration and some trouble with eye contact and back and forth conversation.  He also is still often very rigid in his routines, in his play, and in his expectations of others.  Playing with peers is not something he seeks out often or does appropriately. Things have improved a LOT in a the last year, but all of that is still there, to some extent. We continue to work on all of these things with the early intervention folks as well as at home and we see steady progress.

To most, he just appears like a stubborn, willful kid who challenges us.  So many remind me he is only three and his behavior is still age appropriate. Plus, there's always the old standby -- "He's a boy!" They're right in some respects.  Tantrums, parallel play and not-so-finely-honed conversational skills ARE still kind of appropriate for some three-year-olds. But soon enough, he will be four.... five... six.... and his peers will have moved on from those things.  Both our experience, and those who work with him, tell us he will be left behind, forcing him to play social catch-up in 2nd or 3rd grade, when peers are often less than forgiving of those differences.

So in short, that is how we "ended up here". It has been a learning experience, for sure.

I am immensely grateful to those who have had so much patience with us, who have taught us what they know, put the time in to tirelessly help our son, and been listening ears when it all gets confusing. The other moms in the autism community have been a wonderful resource as well and are a goldmine of advice and tips. It's invaluable to have people who really get it in a way no one else can.

My goal these days is to become as educated as I possibly can so I can navigate this world in an articulate and intelligent way and get my children what they need when they need it.

It has opened up a whole new world of interest for me too and given me new purpose. My kids are so quirky, so bright, and such NEAT people. I want to learn as much as I can about what makes them tick and I want to share their uniqueness with others. It's a lofty goal, but I would love to see a world that meets them where they are, that understands what makes them different and so very special....