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 must be weak

Bubba and Diva are really becoming a handful.  Geek hasn't been much help and in fact seems to retreat into his computer games every chance he gets.  So I handle it, I handle it all and feel like shit when I ask him to help out...especially when he spends the time yelling at the kids.  I wonder if being a single mom would be better for all involved.

I don't think I ask much: take the trash out, do the laundry (I fold and the kids put away), clean the bathroom, mow the lawn, and supervise the kids cleaning at times.  Geek will help out more when I'm sick or hurt (I have a slipped disk in my back so throwing it out happens every now and then) but I still do 95% of the child care and cooking.  I cannot imagine how much of a mess things would be if I had an actual job!

Geek can be worse then the kids about leaving things around the house.  He has this bad habit of taking his clothing off and just leaving it where he got changed at.  Drives me nuts!  He is a grown man and I pick up after him more then I do the kids!  And I swear he does things in the worst way possible (like folding laundry or loading the dishwasher) just so I don't ask him to do it again.

The kids needs are wearing me out.  I feel more worn down everyday.  I'm on 24/7.  Even on the few days each month I can sleep in, it doesn't happen.  Someone needs their hair done or can't find something they were looking for (even though they would find it if they moved something!)...see what I mean?  Kids get sick?  Mommy!  Bubba needs nebulizer treatments every 4 hours?  Mommy!  What's Daddy doing?  Probably playing his dumb ass computer game.

I've spoken to him about it many times over our relationship, things change for a few months but then they are right back to where they were before.  I barely have the energy to give to my kids everyday, I defiantly don't have the energy to deal with Geeks computer game addiction.

I must be weak to stay with a big man-child.  I must be weak because my kids medical problems are crushing me...heck, my own medical problems are crushing me!

I just want a few days, totally alone, no husband/kids/cats to take care of.  I don't want to worry about anyone but me and recharge my batteries.  But that will never happen, so I just keep figuring out how to keep functioning.

"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?"

Mainstream schooling...*sigh*

Bubba has an IEP (Individual Education Plan) and is mainstreamed at school, with some modifications.  Basically, that means that he is in a regular education class with some extra in-class support and he gets extra time to take tests.

This keeps him with neurotypical students.  Neurotypical means kids who don't have "issues" with their brain, for example:  autism, seizures, etc

This is a good thing and a bad thing.

It's good because the other kids are usually good role models for how to act.  They help him practice proper social interactions.

It's a bad thing because kids with Aspergers usually can't tell when someone is a friend or a bully (we dealt with this in kindergarten adn 1st grade) or when someone is friendly-teasing.  And it can also leave the non-neurotypical kid feeling like an outcast.

We have been having trouble with Bubba's school over the last week-ish.  We get a feeling that he is being singled out due to his Asperger's, and that the teachers/aides are relying on the other kids side of the story and not even listening to Bubba's.  Kid's with Asperger's are honest to a fault.  They don't understand things like the "little white lie."

I threatened to pull him out of school to home-school him.  I don't want to because this child is going to be smarter than his college graduate mother before too long :0)

Our next option was to look into alternative or private schooling.  There is an autism program run in our county out of a school about half an hour away.  We are going to insist, at the least, that we be permitted to look into the program.

The school keeps insisting that he needs to be with neurotypical kids to "socialize" him.  He started publie school in Pre-K, he is now in 2nd grade.  His friends are the kids he wrestles with because they accept him for who he is.  He has no friends in his class and hasn't since he started school. 

"Socialization" is no longer a good enough reason to keep him in that school.  Especially when I get an e-mail from one of his teachers telling me that the other students "shouldn't have to tolerate" the things he does.  Well, I don't think he should have to tolerate being forced to sit still for hour at a time, or being picked on when the teachers/aides are out of ear-shot.

After he came home with wood chips all over his socks and him telling me that some kids TOOK HIS SHOES out on the playground, I asked him if he told an adult at the school.  He said he did but was told not to "tattle."  So when the kids pick on him, he doesn't say anything anymore.

How freaking sad is that?



We have an appointment on Monday, 10/21.  I'm sure I will have to get pissy a few times.

Don't mess with the cub if you can't handle Mama!

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!

I keep telling myself...

I have to keep reminding myself that Bubba's brain doesn't work the way mine does.  Between the Asperger's and ADHD, his wiring is just so different from mine that I have to keep telling myself he has his own way of doing things.

This has good and bad parts.

The bad is that it can take him a lot longer to do what I consider a simple task.  He can't focus because he hears everything.  For example, the sound of my super quiet (to me at least) dishwasher is so loud to him.

The good?  He sees things and thinks things that amaze me.  He has such an active imagination.  The way he solves problems blow my mind.  There have been a few times he has come up with a solution that Geek and I never considered.

I need to keep telling myself that we will eventually get from Point A to Point B, we just may take the scenic route.

In a bit of a daze...

We got back from Bubba's behavioural health appointment a few hours ago.  Why is this blog-worthy?  Because his doctor not only agrees with us that there is something more than ADHD going on with him but has diagnosed with with Asperger's as well as Tourette's Syndrome.

Let's tackle the Tourette's first.  We stopped all ADHD meds on the last day of school back in June.  If the medication was causing his tics, they would have stopped after we stopped the medication.  He is not only still having them but they are worse and he is having more.  As of now, the plan is to treat the ADHD with medication and the tics with fish oil and hope that the combination helps control the tics.  There are medications to control the tics, but the side effects aren't worth starting him on them right away.  And we really don't want to put him on yet another medication.

While the Tourette's is a shock, I actually think I'm more shocked about the Asperger's diagnosis.

I'm really not sure why, seeing as how I have had the suspicion this is what was going on for a few months now.  I guess I was hoping the doctor would tell me I was reading too much into Bubba's quirks.

From what I understand, there is no cure or medication for the treatment of Aspergers, you just kinda manage the symptoms.

We walked into the doctors office with one diagnosis and left with three.

He is still my Bubba.  He is still the funny, loving kid who is obsessed with history...and reading...and playing video/board/card games...and cheeseburgers, he loves cheeseburgers :0)

I really hope this isn't rambling, I really don't have my thoughts organized, I just knew I had to get them on paper.

Well, Diva has her gait test tomorrow, her behavioral health appointment next week, and her endoscopy next Friday.  I'm sure there will be a lot to write in the coming days!

Probably going to piss a few people off with this one!

It really pisses me off how all you breastfeeding mothers high-five yourselves and put down those of us who choose to use formula. Where does all the anger come from?  Someone posted on line a picture of a recipe for a pizza that was paid for by someone else because the mother whipped her boob out in the restaurant to feed her baby.

Please remember, some of us want to breastfeed and can’t. Some of us choose not to breastfeed.  GET OVER IT!

Guess what?!?!?!? It doesn’t come easy to everyone.   Does that surprise you "Nipple Nazis"?  

Does that make me less of a mother because I NEVER got milk in?  Yeah, even with meds, herbs and many lactation consultations I STILL couldn’t get milk in either time I was pregnant!  

One was born 9 weeks early and the other 4 weeks early, both were difficult, dangerous pregnancies.  I almost died while pregnant with my oldest, hence him being 9 weeks early.

"Oh, but you could have gotten milk from someone else!"  HELL NO!  There is no way in hell I would allow another woman's milk into either of my kids bodies.  Sorry, that's just gross.  Not to mention, with two kids with special feeding needs (i.e.- I had to mix their formula to a special calorie mixture and add rice due to reflux) formula was easier in the long run.

"But that's how they did it before formula!"  Yeah, they also used to drain blood out of your body to "cure" just about everything.  The old way is not always the best way.  Oh, and if we still did things "the old way" I would have probably died from pre-eclampsia before Bubba was born and if I had survived, Bubba probably would have died from the pyloric stenosis he was born with.

Just once, I’d like to see “High-five for feeding your baby!”  Really, who the fuck cares how you feed them!

I’m an AWESOME mother, I have AWESOME kids…hell, my son has genus level IQ and my daughter isn’t far behind!  See how important breast milk is?  

Seriously, other than your kids doctor and maybe your OB/GYN, who was the last person to even care if your kids got the boob or the bottle?  I haven't been asked in years.

"Special Needs"

I have a problem with my kids having this label.  You can't see their medical issues like you can with other things.  They don't use a wheelchair (ok, we did have to get Diva a special needs stroller, but it looks like an umbrella stroller), they don't have braces or casts, etc.

They both kinda fall into a gray area.  They aren't 100% healthy but, to us, they aren't disabled enough to be considered disabled.  Sadly, if Bubba actually had a diagnosis on the Autism Spectrum there would be more resources available to him and us than there are with just an ADHD diagnosis.

I feel like we are sitting on a fence and we don't really fit on either side of it.  Then there is that label...special needs....different needs...differently able...etc.  I dislike all of them.

I have yet to figure out exactly why I dislike the label, but I think it may have something to do with wanting my kids to be treated like any other kid.  Labels have a way of separating people.