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)

Wow...just wow

I really have no words for the way some people on my side of the family treated me very early on Christmas Eve.  My kids don't sleep well, even at 7 and 6, so therefore I don't sleep well (Geek works 3rd shift if I forgot to mention that before.)  Remember, Bubba has high-functioning autism, mild Tourettes (which is getting worse), and ADHD; and Diva has mild cerebral palsy and is now being treated for anxiety.

Anyway, at around 3am on the morning of Christmas Eve, after my second night of less than 2 hours of sleep, I took to Facebook to complain about my kids not sleeping and how tired I was.  My father informed me that it was all part of being a parent and I should "quit bitching", my brother-in-law said the same thing, then one of my sisters posted a passive-agressive status stating I should just be happy for what I have.  My husband informed them that they have no clue what it's like to raise one special needs child, let alone two, who don't sleep well,

Here's the thing...I very rarely complain on Facebook.  And when I do it's mostly light-hearted, like complaining that my perscription insurance needs an easier to navigate web site.

Geek was pissed, to say the least.  He called my step-mother, told her what was going on and let her know that we wouldn't be making it to the family Christmas Eve party because he didn't know if he could keep from punch my father and brother-in-law.  Yup, that's how pissed he was (and still is.) 

I should mention that my step-mother took our side, blasted her husband (my dad), son-in-law, and daughter.

I actually un-friended my father, sisters, and brothers-in-law.  I feel GREAT!  They were some of the most negative and pessimistic people.

I'd love to know why it's ok to complain about their jobs, their pregnancies, their pets, other drivers, service at restruants/stores, how tired they are, etc but I get blasted.

Best part?  I don't have to see (read?) the dumbass political stuff they post.  I'm all for everyone being entitled to their own opinions and political views...when they are actually informed about it and don't get their news from internet memes :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

I Would Be So Bored With "Normal"

There is nothing normal or typical about my life.  Well, there are a few things.  I cook for my family...we laugh...we play games (the Minions LOVE bored games)...I spend one night a week putting their weekly pill containers together...we visit so many doctors that my kids know the drill by heart...

Wait, those last two aren't normal.

I spend Thursday nights, after the Minions are tucked into bed, filling their weekly pill containers.  Diva takes two pills each day...one is a fish oil and the other to help her sleep, in addition to mirilax.  Bubba takes 5.5 pills each day...two fish oils, 1.5 for ADHD, one for asthma, and the other for reflux.

Doctors visits...Diva sees a GI doctor, an orthopedic doctor and a psychiatrist on a regular basis, in addition to her family doctor.  Bubba sees a pulmonolgist (for asthma) and a psychiatrist, in addition to the family doctor.  Of course, they also see the dentist and eye doctor.

Did I mention before that they both get physical therapy (PT) and occupational therapy (OT) and Diva also gets speech therapy (ST)??

They have seen just about every specialty at the childrens hospital at some point in their life.

It makes me sad when we get complements like "it's great that they can swallow pills and that they don't give you a hard time taking them"..."you are so good letting me examine you"

Honestly, I wish I had to hold them down to get a shot or take meds.  I wish they haven't had to experience of anesthesia.  I wish I would have to sit there and watch them take medication, rather than just telling them "time for meds" and they know which slot to open.  I wish they didn't know to question if they have the correct pills if the color/size/shape changes.

I wish my kids didn't know what the inside of a childrens hospital looks like.  I wish I didn't have to give their teachers a full page background on them.  I wish Diva could have milk, didn't need medication to help her poop every day, and that she could sleep well.  I wish Bubba could make friends easily, knew a time when he didn't have daily pills to take, and didn't have to carry a nebi/inhaler everywhere.

I'd like to have just one week to enjoy my Minions without the consent worry.  But it's not going to happen, and I'm ok with that.  Taking Diva home after her surgery a few weeks ago, I said to Geek, "We would be so bored with our life if the kids were "normal""  He agreed.

A friend of the Geek said to him, "I don't know how you do it.  I'd be mad a the world."  Geeks response, "What good would it do?"

Finally....some answers!!!!!

We have some answers for Diva!  She has mild Ataxic Cerebral Palsy.  And CP is most likely the cause of her cronic constipation.  As for the feeling of food getting stuck in her throat?  Well, according to her orthopedic doctor, the form of CP she has is mild so it's not likely...but anything is possible.

Her treatment plan (Geek and I are so freaking happy we finally have one!!!!) is as follows:
-PT is increased from once a week to twice
-lower leg braces to be worn part-time (so basically for school and walking trips, like the zoo)

We left her appointment feeling so much lighter.  This massive weight has been lifted off our shoulders. 

We have treatment plans for both kids.  We feel we have the best diagnoses for both of them.

Things are starting to fall into place!