The reality of special needs, and how you can help.
Sometimes, other parents make me want to rip my hair out.
Which is unfortunate, because I quite like my hair. It's not their fault, it's just part of the hard reality of having a kid with special needs.
Happy posts on Facebook about the cute conversation you had with your four year old? Shut up. Don't want to hear it.
Pictures of your preschooler smiling and holding their new baby sibling? Can't handle it.
Pictures from play dates, evening outings to restaurants and taking him to his first movie? Please just stop.
I want to be excited for you, I want to celebrate the victories of your kids. I really do. But sometimes, it's really fucking hard.
I'd LOVE to have a funny conversation with my kid, but he still can't really talk much, so he just gets frustrated and ends up screaming at me because I can't understand what he's saying. I'd LOVE to take cute family photos and send out a Christmas card, but it's a rare day when I can get Rowan to sit anywhere near his sister, let alone smile at a camera for a posed picture with her. When she crawls near him, he usually screams at her. I'd LOVE to take Rowan to the movies, or out to a restaurant without him licking the walls, falling down or purposely hitting his head against something because he has social anxiety and can't process it properly.
Not every day is like this, of course. We have good days and bad days just like every parent, and we have our victories and reasons to celebrate. We work hard to make sure we celebrate every chance we get, and we always give him hugs, kisses and praise when he does really well in difficult situations.
But, a lot of our days are draining. They require more of us - patience, an even temper, prayer, consistency and routine. We work hard to make sure every day works out just so, because we know if one thing goes off kilter, the whole day could be lost.
It's okay, I don't need your sympathy or a pat on the back. Parenting is difficult, no matter what your child deals with. We are all in a little too far over our heads and we're all trying to raise our kids to be good, responsible, contributing members of society who need the least amount of therapy possible in their adult years.
So if I don't need your sympathy and I don't need your praise, what do I need, as a parent of a kid with special needs?
- If you see me dealing with a massive meltdown, pray over us from afar. Pray for peace and calm over my kid, pray for strength and determination for me.
- A day or night out every once in a while. Preferably, one that involves alcohol and no children.
- Invite me places. I know I turn you down 9 times out of ten, but trust me, being asked & included means the world to me. Don't give up on me.
- If I'm carrying a thrashing & screaming kid out of a building, offer to carry whatever I had to leave behind. It's most likely my purse or a bag of groceries or something.
- If you want to hang out, offer to come over to my house, rather than asking me to come to you.
- If you see my kid behaving strangely - licking walls, hitting his head, purposefully falling down, just let him be. He'll be alright, he's just anxious about being around people he doesn't know.
- Sometimes, I don't want to be around your kid with "normal" behavior. Please don't be offended, I love your kid. It's just hard to be reminded of the ways my kid has to struggle. Just give me an understanding smile and that'll do.
- Please, whatever you do, don't stare.
- If we make plans and I have to cancel because my kid is having a hard day, please understand. And hunt me down to make sure we reschedule our date.
- (Other special needs parents, chime in! What else is helpful?)
Being a special-needs parent is hard. It's work. I'm usually exhausted by noon. But it's also beautiful, inspiring and affirming. When the difficult days come, remind us that there is much to love, much to celebrate and much to be joyful for.
Always remind us of the joy.
And always bring wine.