Special Needs Parenting: Leaving the Nest and the Long Exhale

Special Needs Parenting: Leaving the Nest and the Long Exhale

I didn't think I could do this.

But I had to believe he could.

My oldest child, at almost 22, has left the building. On to college. But not in the way most people think when I say, "He's off to Iowa this fall." It isn't for a degree. But it's a huge step in his life education.

It's everything we've been waiting for, and while I am terrified, I am also, strangely, calm.

I think both my husband and I were more than a little surprised when the hospital let us walk out the door with him after he was born. We didn't know what the heck we were doing. Thankfully, he hit all his physical milestones of laughing and smiling and teeth and sitting up and rolling over and crawling and walking. There was a lot of babble, but no real words, which concerned us enough to request an Early On intervention around his second birthday.

That was almost 20 years ago. Two decades of doctor's appointments and morphing diagnoses and assessments and therapies and IEP meetings with that damned tissue box in the middle of the conference table. Two decades of Googling every symptom and trying to best fit them into a single answer.

Two decades of art supplies and classes and encouragement to support his love for drawing, and art in general. I'm biased, but I think everything he makes is a masterpiece.

Two decades of friends of his that couldn't be counted on, nor expected, to stick around. He's had several over the years that made a genuine difference, but we both learned early that friends like those were the exception to the rule. And for those friends I am eternally grateful.

Two decades of supporting a love of music — from trumpet in the school band to bass and drums and even making crazy sound combinations on his sister's keyboard. His four years of marching band provided an opportunity to gain confidence and composure in the face of pressure.

Two decades of watching this spectacular young man get knocked down but who managed to get back up every single time. Of watching him make painful mistakes all in the name of trying to make himself more socially acceptable. Of a road seemingly so much longer than his peers.

Two decades of trying to manage my own anxiety and outrageous imagination every time the school number appeared on my phone. Of tempering expectations with reality. Of constantly trying to remember that my child's social-emotional limitations are not something he can just grow out of. Fears of loud noises, thunderstorms, being late and unlocked doors are not something to be admonished for, no matter how frustrating it can be.

Two decades of sacrifice from everyone else in the family. My marriage, career, friendships, health, even just sleep, were all put on the back burner at the expense of tending to his needs. I wouldn't trade the experience to have any of those things be better, I just think that often times people don't understand the wholesale effect these kinds of diagnoses have on a family.

I'm not the best example of how to do anything, but for those at the beginning of this journey, if I could go back, I would:

Advocate longer and louder for my kid. Too often, I wanted to be the "nice" parent, not "that" parent. But "that" parent? That's the one that gets shit done.

Try to find some "me" time. I fit in exercise and an occasional girls' night when I could, but self-care was not high on the list. I wish I had recognized how exhausting raising kids can get, regardless of their abilities.

Try to find some "we" time. It was more than 20 years after kids before my husband and I took a solo trip that lasted longer than an overnight. A solid commitment, a trusted partnership, a best friend ... those kinds of relationships require more nurturing than the morning "hello" and evening "good night" can offer.

Now I'm standing on the sideline, hours and miles away from being able to answer the call and hug the kid when something goes wrong. And there's a part of me that is eerily calm, confident that he was and remains ready for this next social experiment. The atmosphere feels a bit more spacious, like there's more room to breathe. Or maybe it's just that I'm not holding my breath as much. Or waiting for a shoe to drop.

But I also miss him. That space that was occupied is now empty until Thanksgiving. He could read my emotions like a professional poker player picks up on everyone's tells. I was reminded of exactly how in tune he is to my frame of mind when I tried calling him earlier this week, and he didn't answer, but instead texted he was about to leave for a group outing, and said, without prompting, "I miss you too."

Go, my oldest — go have fun. You have earned this. You have worked so hard, and I know you will continue to work for more, for better. Celebrate this next step, make new friends, discover new interests and embrace new passions. Just don't let anyone turn your heart too far away from mine. And remember that your whole family has your back.

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