The Gray Area

I feel like I'm living my life in The Gray Area.

Geek and I are separating...but not really.

Bubba has Autism...but the support groups and other things (apps, books, etc) are for kids with the classic form, which he doesn't have.

Diva has cerebral palsy...but again, any support I can find is for kids with the severe form, her is mild ataxia.

Let's start with Geek and I.  If we didn't have the kids, this would be really easy..."bye!"...but not only do we have the kids (and for their sake we need to stay friendly...not that anything is ugly between us we just realize we aren't working as married parents) but we need to wait until the end of the school year to even tell them on the suggestion of their psychologist.  The last thing we want to do is cause any issues with them finishing out the school year.

Now, the support groups.  I want support from other parents, I want their advice, their tips, their friendship.  Our families really don't understand, some of them try to but until you live it day in and day out you really just don't get it.  For instance, Geeks aunt and mother don't understand why we "insist" on disciplining the kids immediately...I'm not sorry, you cannot take Bubba/Diva with you to do something fun and postpone his/her punishment!  The there is the snide, "Does she really need to sit in her wheelchair?"  Um, yes, if we don't pace her she will tire out and meltdown.  I'm sorry you are embarrassed by the wheelchair and her braces, but tough shit.  Yeah, I'm not sorry about getting rid of my in-laws at all.

I wrote this back in early May.  Over the next few days, I'll be posting  a lot.  I wrote to help me through my emotions, but I didn't want to post anything until I was in a better emotional place.  

Please stop...

Diva wears AFO's (lower leg braces) to help with her cerebral palsy.  She LOVES them.  Geek and I say she views them as just another accessory.  She is not bothered in the slightest by them, she got them with her favorite colors (pink and purple) and one of her favorite things is on them (ladybugs.)  We know they are helping her.

Anyway, she has a little tummy and doesn't like anything tight so jeans are out of the question.  She usually wears "yoga" like pants (leggings?)  and they usually aren't baggy enough to go over her AFO's, so they are usually seen.  For school, since they wear uniforms, she has skirts or jumpers she wears (again, no khaki pants...until I get a chance to make her some with elastic in the waist) so it's leggings or stocking or knee highs...her AFO's show.

Many people in the family have thought she was wearing cute ladybug knee socks when they have seen them peeking out from under a longer skirt or pants. 

Basically, her friends, classmates, the family, anyone she is around a lot are totally used to them...as they should be.

Kids are curious, they see something they haven't seen before and they wonder what it is.  There have been a few who were brave enough to ask either me or Diva about the braces.  We say that they help her walk, the child usually tells her they are cute or just an "ok" and it's on the the next thing.

But...

Then there are the adults.  They stare and that makes me uncomfortable.  Diva doesn't notice, or if she does she just doesn't care.  Have I mentioned that this child has an extremely high self-esteem and knows that she is smart, beautiful, and loved?

And with Bubba, it's worse! There is no way to tell by looking at him that he has autism, ADHD, or Tourett's.  He tics, he stims, he has melt downs, he has impulse control problems.  Again, kids don't really care but the adults...they can be so rude.

He doesn't need more discipline, honestly, he is probably upset because we had to make an unexpected stop and he didn't have enough time to mentally prepare himself.  We don't need to yell or raise our voices with him, it will make him shut down totally; talking quietly to him is most effective.  Yes, he is dancing in the frozen food section, but he isn't hurting anyone and he isn't in any ones way so stop throwing me dirty looks, he's just stimming.

Here is what I would want you to do, I can't speak for everyone, but maybe it will give you some in site:

-Don't stare!  It makes me uncomfortable.  If you want to know what Diva's braces are for, ASK!  I'll be glad to answer most of your questions.  And really, your kids aren't bothering us by asking questions, they are just being kids.

-If Diva is in her wheelchair, respect it.  Offer to let me push her chair up front so she can see what's going on.  Don't expect me to push her into the grass so you can take up the entire sidewalk.  Don't give me dirty looks when I say "excuse me" so I can get through.  

-Don't click your tongue, roll your eyes, loudly sigh, make snide remarks, etc about our parenting.  There is such a thing as in invisible disease...like the 3 Bubba has!  Heck, you wouldn't know about Diva's if she wasn't wearing her AFO's.

-If either kid is having a meltdown, either offer to help ("Can I give you a hand?" is the best thing to say) or go away.

-Remember, Geek and I are under a lot of stress and trying to make our kids lives as "normal" as possible.  If I look like death warmed over, don't tell me how tired I look...trust me, I know!  Just smile and say "hello" and don't get upset if I don't want to stay and chat, especially if I don't have the kids with me.  It may be the only "me time" I get that week :0)

"I just want to walk and walk and walk!!!"

Those are the words that came out of Diva's mouth this past weekend...on her second day of wearing her AFOs (leg braces). 

My baby girl, who usually hates talking because it makes her so tired and makes her legs hurt, wanted to walk and walk and walk!

It's enough to make a mom cry...with happiness, of course!

There is a down side, we had to buy her new sneakers (ugh, $50!) because she needs the widest ones available.  By the way, I HIGHLY recommend New Balance shoes and a visit to Stride-rite!  They were so helpful!  But sneakers are the only thing we have found to fit her.  Being a lover of shoes, this has been hard on her, but she understands.  At just shy of 6, this little girl understands that she can either wear whatever shoes she wants or she can have her legs not hurt.

AND!!!  She is getting her toe fixed on Friday.  She is excited because the toe hurts her.  I'm anxious, really anxious.  I'm not sure why, it's not like my kids have never had surgery before.

We are STILL at odds with Bubba's school, nothing really came of our meeting and Geek and I are currently in contact with an attorney.

AND, with all this craziness...wrestling season has started!!

Never a dull moment :0)

Here is the pattern Diva picked out

Here she in in her new AFOs