I have thought an awful lot about building independence in my kids. I’ve written about it here and pondered the maturity changes here. But recently one of the Parenting Partners took it to a whole new level. One I never thought of before, but needed to.
She spoke about how our kids move through the world without the safety net of parents. Her first hurdle was public transportation with parents and most of the kids involved were 13-ish. We couldn’t expect them to turn 18 and suddenly just know how to read maps or figure out how to get out of a mix-up or a bad situation. We all shared the ways we learned–through problems–how to persevere in life.
Color me overwhelmed. And underprepared. And blindsided with just HOW old my kid was and how much I had not thought about.
This whole thing struck me at a time when I was already feeling the pressure of “only having 5 more years–at best”. It started with last year’s evaluation in Iowa–where the very experienced and well-respected evaluator noted that where she can generally spot an autism spectrum diagnosis within 3 minutes of meeting a new patient, with BigGuy–she did not. It wasn’t because he was borderline for a spectrum diagnosis. Two days of testing showed he was absolutely in the autism spectrum.
Thankfully, she already knew my problem: BigGuy looks neurotypical at first glance and people will expect him to function neurotypically when in fact, he cannot.
Suddenly, the years of therapies and interventions that brought him to this point meant I now had only five years until he was legally an adult to get him to function as much like a neurotypical adult as possible. When you have a quiet and reserved kid in the spectrum, the challenges and dangers are very different than when you have one that is loud, outgoing, and exhibitionist. Neither is able to handle some of the life and social situations that befall them; but the loud and outgoing exhibitionist is screaming to the world and inviting MORE of those situations into their lap. It’s very scary.
A year or so ago, another Parenting Partner exposed me to a book called “Life Skills Activities for Secondary Students with Special Needs“. I didn’t bother to buy it because 1) it was more expensive than it currently is; and 2) I didn’t feel it was very necessary. But my entire mindset on this has shifted. I bought it. There are 190 lessons in there. Here I thought we could go through it in the span of a year. No way. Not if I want to really do each one thoroughly. At least I have it to work from and am plotting it out now. There are six sections: Self-Awareness (including character and life choices), People Skills, Academic and School Skills, Practical Living Skills (including information skills, money, shopping and living arrangements), Vocational Skills and Problem-Solving Skills. Every lesson looks like a topic I want him to feel deeply; and even if the lessons in the book aren’t awesome–they are a jumping off point for me in working on that specific goal.
There’s no question that I am so feeling these last few years being his last few years. I treasure every single snuggle. I am finding myself simultaneously falling apart personally for other adulting reasons and problems but more controlled in my behavior because I want to draw my kids closer rather than push them away. Every parent posting the pictures of their child on the first day of kindergarten next to the day they are graduating high school is just driving it home that the days may be long, but the years fly by. I am listening.
And I am tired. Really, really tired.
I am also eternally thankful that I am in this space. I have come as far as my guy. I have overcome as much as he has. I see the profound difference in my life that the years of therapies have made for me and I know that even if my BigGuy goes no further ahead–he knows who we are, he can articulate what he needs and his upsets, he laughs and he loves.
THESE. ARE. SO. HUGE.
I know–parents of neurotypical kids really don’t give these things a second thought. But I remember when we had none of these things. I remember when we didn’t know if he would ever be capable of those things. I remember having to consider who would care for him as an adult when Husbeau and I were gone if he outlived us. I remember the first time he actually looked at me. I remember the first time he noticed we were not in the room. I remember the first time he laid his head on my shoulder. I remember the two first instances where he made his needs known.
I will never. EVER. forget what it was like “before”. Not to mourn the tragedy but to remain grateful for overcoming it.
But we still have work to do…