Wednesday, March 06, 2013

Special needs of special needs parents

Saw this posted on Facebook and had to give my input.

We need you to bring it up. Ask us our stories. It’s OK to ask questions. Most parents of children with special needs would prefer that others ask them about their child directly, rather than avoiding the topic. A smile or friendly “Hello!” is an easy icebreaker.

I'm really not in a good place right now.  I have inwardly cringed at every "How's Ace?" since he got out of the hospital and have become very good at faking.  Because honestly, living with him is very, very, very difficult.  So when you ask how my kid is, be prepared to be BSed or be prepared for the real answer.

We need our kids to have friends. We want you to invite our kids over for play dates. If your child wants to have a play date with my kid or invite him or her to a birthday party, encourage it. Call the other parent and simply say, “How can we make this work?”

Well, I would LOVE him to have friends, but he is incapable of doing so.  So, sure, invite him to birthday parties, but don't be surprised when I helicopter-parent instead of talking to you and bounce without saying goodbye when he starts threatening other kids.

We need you to share your concerns. If you are concerned about something regarding my child, by all means, tell me about it. I may not have an answer for you, but I sure will appreciate a conversation about my kid. But we don’t always need your advice. Feel free to talk to us about a new therapy or diet you’ve heard about. Just be aware that we’ve probably already heard of it/tried it.
No!  Keep your trap shut unless I ask you for your opinion!  UGH.

We need you to make an effort. Effort goes a long way. Educate yourself about my child’s special need. For instance, learning simple signs so that you can better communicate with a child who is deaf (and uses sign language) would be appreciated.
By all means, educate yourself about cerebral palsy or Asperger's.  Ask me technical questions about either.  But do refer back to keeping your trap shut about gluten-free diets and whatnot.

We need you to prepare your kids to hang out with our kids. If you know you will be spending time with my child who has a disability, talk to your child about it beforehand. Talk about behaviors, and ways your child can play with my child. Need ideas? Ask!
Yeah, do that.

We need you to be considerate. Consider the age of the child with special needs. If it is a new baby or a younger kid, I may not be ready to talk about this parenting path I have found myself on. But that doesn’t mean I won’t ever want to talk about it. Follow my lead. I’ll let you know.
That basically contradicts "share your concerns."  I am only open about Ace with a very, very limited amount of people.  No, you may not be let in that circle if I don't REALLY know you.

We need your tangible help. Offer to bring over a meal, or help at a doctor’s visit. I’d love it if you hung out with my kids with special needs one afternoon so that I could take my other kids to a matinee.
Hell yeah, bring me a meal.  But, um, if I had other kids, I'd want you to babysit them all together so I could go get a pedicure.  I'm just saying.

  • We need you to treat us like other friends, too. Talk about other things with me besides my child with special needs. Believe it or not, I may just want to gossip about Angelina and Brad and their globe trotting kids.
  • We need validation. Don’t dismiss my concerns by saying “oh, my typical child does that”, or my favorite “well, then my kid must have a disability too, because he/she does XYZ also”. When I open up about a struggle, I want validation, not to be blown off.
  • We need invitations. Don’t assume I’m too busy. Ask me out to eat or to a movie. I may not be able to get away as easily as other friends who don’t have kids with special needs, but I’ll go if I can, and if I can’t, your invitation will make my day. And ask me again!   

These are all good.  Especially the part about treating me like your other friends.  And please, share your child's accomplishments with me.  I want to celebrate with you, just as you celebrate Ace's accomplishments with me.

1 comment:

Danielle said...

I'm so sorry it's so hard, Stacey, and wish it wasn't. You are awesome.