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!