Parties, Players, Planning and oh, POOP!

This past Saturday, we had son 3's birthday party at the local bowling alley.  I had asked the school for a list of his friends, for example  -  that he eats lunch with.  I got the ten names, and addressed invitations to them, got several RSVP's, and we were looking forward to party time.    Now, son 3 has CP, and is fairly severely affected.  He has severe dysarthria, uses a power wheelchair and AAC, but has a great attitude, and the bowling alley we picked is accessible and has ramps for wheelchair bowlers to put the ball on.

So I started out Saturday optimistically, though I knew we were logistically impaired by the fact that Son 2 had a sleepover guest Friday night, and we would be waiting for that guest to be picked up Saturday.  Still, I had a cake to bake and decorate, a van seat to remove to accomodate the wheelchair, and I figured it would go ok.  The men in my life figured it would go okay if I did everything.  Unfortunately, I can't lift the van seat alone.  (Well, I can, but if I do, I'm not bowling or doing much of anything else with my right arm for awhile.  Carpal tunnel being the joy it is.)

My darling husband, whom I truly love, decided he would play the PS3 while I got things ready to go.  That was not helpful.  Rarely are videogames helpful when there's a deadline involved.  Suffice to say that I got little help, and we ended up behind schedule.  What else could wrong?  Weeeellll.... 

Running late for our own party, I got a phone call from a guest's mom who told me that the bowling alley in question was closed, opened at 3 not 2, and what should we do now?  I asked her to hold tight for a minute, called the alley, got a machine, and made the decision to move into the park behind the bowling alley for the cake-eating, present-opening portion of the party.  I then called hubs to let him know (since with a van seat removed, we need two vehicles to transport our family), and proceeded to the park.  We met, got the cake eaten and went to the bowling alley.  Hubs was fit to be tied, as he felt that any misunderstanding or anything was completely unconscionable. 

Bowling went well, the park went well, the kids had a great time, and I think that's what it's all about.  BUT...I've learned a few things.  1.  Call the place a few times.  Make sure you're speaking with management, not the new teenager.

                                                  2. No sleepovers for other children the night before parties.

                                                  3.  NO VIDEOGAMES THE DAY OF.

So, having figured all this out, that's the story of the party that was a bit of a mess, but turned out pretty darned good, all things considered. 

The only other thing is... all these friends of Son 3 are also disabled.  Interestingly, I found out from the parents that the majority (all but one) have 1:1 para support at school, and that is why they eat lunch together.  Son 3 doesn't even like one of them, though that kid likes Son 3 quite a bit.  I'm glad Son3 has friends, but I'd like to see him interacting more with typical peers.  It's actually a request I've been making most of the year.  I feel that he needs that typical, un-para-aided type of interaction to allow him to truly grow.  He gravitates mostly towards adults, because they are (generally though not always) more patient with his attempts at speech production, digitally or vocally.  But all teenagers need to be comfortable in their peer group, and he is no exception.  Just because he has physical issues is no reason he shouldn't be involved with peers in group outings, etc.  They have games and dances, but he never wants to go because his para won't be there.  I think his dependence on the para needs to be addressed, and he needs to associate with typical peers, as well as those with disabilities. 

It was a learning experience on many different fronts, and it's always good to keep learning.

We're all in this together,

Jane

My Freak Parade

For me, one of the toughest things to overcome is the inability of some people to see past their life experience and attempt to actually put themselves in the other person's position to try to help.

Many well-meaning people have offered suggestions on parenting to me throughout the years, some valuable, some a pain in the neck (moving gradually lower). A fellow parent of an autistic child (HFA) a couple years older than son 2 was discombobulated by the fact that my son is late for... well, everything. Since her daughter is compulsively on time, she thought that was characteristic of all autism. (No. Sorry. Not so much really; no.) People like that are easy to deal with, and generally understanding when you explain that autism has many manifestations, and it would be difficult to find two on the spectrum with the exact same symptomology. The ones that give me pause, though, are the ones who stop me in the store to tell me that my boys are a little wild. (You're kidding, right? Good thing you're here, I might've missed that!) Thus I come to describe our family outings as "leading the Freak Parade". Naturally, as their leader, I'm the bigget freak of all, and we have family laughs and unity over the joke we collectively play on society.

I grow weary of the daily explanations. Son 3 is not in his wheelchair because his legs don't work - rather, it is his trunk that would not hold him up. No, he doesn't envy your ability to run - the wheelchair goes 30 mph. That is another post - parenting and FEAR. Son 2 is not hiding in the bathroom at Wal-Mart because he's committed shoplifting, he just likes the quiet and being around water. Sons 4, 5, and 6 are running because they want out of here as much if not more than you want them out of here. Son 1 is finding other people to talk to because right now, the Freak Parade is a little embarassing for him (yet another post, Parenting Teenagers).

Despite the weariness, I have learned to keep explaining, because it increases community awareness. My sons give explanation for themselves as well, in their own words, which, also increases awareness. In themselves and those they address.

I have an AWESOME Son 3 anecdote - for those who assume he is younger than he is based on physical capability.

We were at the Dr.'s to get his Botox injection for his inner thighs, and the nurse thought she was going to be funny and distract him by wearing a clown nose. He was calm, collected, and ready for the sting, but he tends to be treated younger than his age, or mentally deficient. He looked the nurse in the eye, and said, placidly, "Put down the crack pipe for just FIVE MINUTES. I'm 10!!". He cracked up everyone in the waiting room, and the doctor had to stop laughing before he could deliver the injection.

As a recovering addict, I learned 20 years ago to "take what you like and leave the rest". That's truly a program saying. But it does apply so well to well-meaning advice-givers-in-passing. They don't understand, and you need to decide if it's a nod-and-smile moment, or a teachable moment. It takes awhile to get used to making those decisions, but once I did, life has been much more fun.

Cheers,

Jane