Sunday, February 24, 2008

To the parents at today's party

I didn't get to talk with many of you at the birthday party today. You may remember me as the one who was sort of hovering around my kid, following him from room to room with a nervous look on my face while everyone enjoyed the food, activities and conversation.

If you wondered why my son wasn’t interacting much with the other fifteen kids or doing the art projects or playing the games it’s not because he doesn’t like people or that he’s a bad kid. He’s actually pretty charming and funny if you can get to know him in a more intimate, lower-decibel environment.

To those of you who were in the room any of the three times when Ben threw a screaming tantrum and tore apart the train tracks I’m sorry if it was unnerving. He’s really a very easygoing kid at home… as long as no one touches his trains.

And to those of you who recognized us from the Montessori School and you asked why you don’t see us at school much anymore: I know that when I started talking about special education services and early intervention programs and autism you may have thought “too much information.”

Thanks for being so nice and humoring me. It’s hard to explain our situation in three sentences or less.

And if you saw me come out of the bathroom and my eyes were a little red, it’s just because I had to unleash a little of the emotion and anxiety hiding behind what I hope otherwise came off as a polite smile.

You see, I have this paranoid feeling that there’s this club that you all belong to: The Parents of Normal Kids Club. And I’m not a member. While we all have a lot in common as parents, I don’t know how to hang out at these parties and look all relaxed and “whatever” and drink coffee and chat with you because I am afraid that at any moment my son might really freak out.

I know all the reasons why this is ridiculous and whiny. That it’s a complete, utter illusion that I project on all of you, and for all I know, many of you might have been feeling similarly ill-at-ease for lots of other reasons.

But today I was reminded what a huge gulf lies between the safe, supportive, predictable environment we’ve created for Ben among our immediate family, and the unpredictable and chaotic world out there. And I wonder how we’ll help him cope.

And I’ll admit one more thing.

When Ben told me, nearing the end of his patience for waiting for the birthday cupcakes, “I want it to be over,” I said quietly, so only he could hear, “I do too, buddy. I do too.”

10 comments:

goodfountain said...

Wow, Christa, were you spying on me at a recent birthday party? I know just what you mean about the Parents of Normal Kids Club.I could have written almost every part of this letter - down to the former Montessori preschool.

I console myself with the reminder that it's never smooth sailing with any children. All parents have worries. Not much of a consolation, but at least I feel a little better. A little.

Hugs to you and Ben!

jaki said...

That brought some tears, here. Big hugs to you all. Your road is rough and I really admire how you're handling the wheel!

KAL said...

Oh, Christa. I've so been there. I think maybe at that same party! The PNKC is vastly overrated (IMO), and besides, they often get their share of issues down the road. It's hard, though, when you just want to do what everyone else is doing. Sending you a cyber hug.

Drama Mama said...

I hear you. I feel it, too. I know that you KNOW intellectually, all the things that you are supposed to know: that your son is wonderful; that the PNKC have their struggles, too; that really, no one is looking askance at you...
but it doesn't change the feeling, the desire for your child NOT to struggle, for people to SEE him.

Honest post.

Warm embrace.

Anonymous said...

Christa: so much to say about your post. I've been thinking lots about it but didn't feel equipped to respond via blog comment section. Very quick neutral observations: 15 kids at a 4-yr-old's birthday....? I'd want to leave, too. Interesting that other commenters have had your same ironic experience with Montessori. You think your kid will thrive in it, and instead it sorta traps them inside their preferred habits. deirdre.

Sue said...

Hi Christa, I have sat glued here brewing a few tears, and having a number of chuckles for the past couple of hours. From one complete stranger on the other side of the world to another ... Thank-you
The past week has been a world wind of therapies, advice and reassurances. We are just starting out on the path of learning about hyperlexia, and everyones' advice (therapists and PNK's) is all a bit overwhelming.
I look forward to 'keeping it real' with your blogs. Liam is also 4yo and by the way, loved Ben's rendition of the Owl Moon!
Kind regards, Sue

Sarah said...

Christa,

My son is hyperlexic and I've heard the same words at a birthday party. And felt the same way. I'm so glad that I found your blog. God bless you as you continue on the journey.

Anonymous said...

Oh have I been there. It is so hard to explain to others the reality of your child, your beautiful wonderful special but just not typical child. You do so much in your own world (home, school, etc.) to make things positive and supportive and then when you have to take them out of the comfort zone with all the PNKC it is so hard.

One thing that lightens the load every once and awhile is this great comic strip--Clear Blue Water--you can read it on Yahoo Comics. In that strip the parents of 5 children have a son Seth who is autistic. While Seth does not appear in every strip, I always enjoy his appearances. The strips about ABA, potty training, public reaction to a tantruming autistic child, in-laws well meaning but misguided suggestions are all priceless.

Mama Mode said...
This comment has been removed by the author.
Mama Mode said...

Hi. I know it is an old read, but I fully get it. I too have a hyperlexic, but you know I avoid using the title. I don't want all that goodness and the blessings to be lost for the label. We home school, so I can better nurture and affirm my precious gift from God. So, my child is nine and doing a lot of high school work. Yet, transitions, crowded places, parties, even playdates that someone else gets a longer turn can be melt downs. I am glad this page was here and hope that someone is reading this and being helped and can help me, too. Prayer is my best tool. The meltdowns at this point are where I get left bruised because face it 9 year old is a lot bigger than a two year old and thrown toys have a more intense impact now. The Lord designed my child and wired my child and He knows best. I love them both in two completely diggerent ways. Please if this page is still live, post if you deal with bigger bodies having 2 year old melt downs.