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.  

It's been awhile, I know!

Geek has been out of work for about a month with a lung infection then a kidney stone...he just can't catch a break!  He finally went back to work last night.  Things are getting back to normal.

Just over a week ago, we were getting ready to go to the local aquarium.  I let Diva shower by herself for the first time.  Big mistake.  She slipped on the 3 inches of floor between the tub and the towel on the floor and smack her head on the side of the tub.  I was in there within seconds.  But then she started vomiting.  So we dropped Bubba at his grandparents and rushed Diva to the ER.

Thankfully, everything looks fine.  She was out of school all last week due to the headaches, she is not allowed to do gym class (or ride her bike, skates, scooter, anything that she could hit her head again) this week and has an appointment at the Concussion Clinic at our local children's hospital later this week.

Bubba is back on stimulants for his ADHD.  We aren't seeing any of the side effects that caused us to take him off them before (thank goodness!) and they are working so well for him.  However, we now have new things starting with him.  He is really getting physical by the time his meds wear off in the afternoon.  This evening alone he kicked Diva, pushed her, and hit her.

*sigh*

I'm working on some new items for my Etsy shop and wrestling is winding down.

Yeah, it's been busy!!

I'm trying to get back to my goal of twice per week posting but I'm also looking to get back into the workforce.  It's time.  I'm comfortable with how well the kids have been doing that I feel I can re-enter the working world.

So yeah, just another rambling "here's what we have been up to" post :0)

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 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!

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!

Got Wrestling?

Both my kids wrestle.  They LOVE it!  They wrestle for our local Junior Wrestling club.  Bubba just completed his second year and Diva just completed her first year.

Wait?  Didn't I say both my kids have special needs (by the way, I hate that term, but more on that in another post)?  How can we let them do things with "normal" kids?  How can we let our daughter wrestle with boys?

First of all, wrestling is one of the best sports for kids, like Bubba, with ADHD to participate in.  I read about that recently in ADDitude Magazine and wish I had saved the link.  It hepls with social skills because the kids practicce as a team, but the accomplishments are personal.  The kids are out there for 3, one minute periods (unless they get or are pinned)...it's all them in those three minutes.

Wrestling has also done wonders for Diva with her low muscle tone.  The best example:  at the beginning of the season she couldn't do a back bridge, she couldn't even hold herself up in one if the coach assisted her into getting into the position.  By the end of the season, she was not only able to hold the bridge but she was able to get herself up into it!  This position is fairly important for the sport as it's the best way to get out of a pin.  Oh, and she was also able to make it through the entire 1.5 hour practice.

So how did they do last season?  Wonderful!  Bubba didn't get any pins, but he got much better as a wrestler.  He was able to put what he was taught in practice to use on the mat and improved as a wrestler.  Diva eventually stopped crying when she got pinned, so that's a BIG plus!  How do we know they love what they do?  They can't wait for next season to start!

How do we feel about girls wrestling the boys?  To us it's a non issue.  I know of other mothers who force their daughters to quit once they start to develop boobs, even if they are amazing wrestlers.  I don't agree with this, but they aren't my kids so my opinion really doesn't matter.  What will we do once Diva starts to develop?  I don't know.  Who's to say she will even still want to wrestle in a few years?  We will cross that bridge when we get to it.

Hubby and I are so happy the kids have found a sport they are passionate about.  He coaches and I'm Team Mom.  Basically, we do nothing but wrestling from October-ish to March-ish...but I wouldn't have it any other way!

 professional pictures from Picture People...they do amazing work!

 Diva and Bubba at a tournament

 pep talk from Coach Daddy

pep talk from Coach Wayne

He's not a "bad kid" he has a medical diagnosis!!!

A big "SCREW YOU" to anyone who still...STILL...thinks ADHD isn't real.  Is it over diagnosis, probably, do some parents use it as an excuse for their shitty parenting, you bet.  But my son has an actual diagnosis, from actual medical professionals.

We spoke with our family doctor about some issues he was having at school.  Did his teacher bring it to our attention, yup.  But she spends hours every day with him so of course she would mention it to us.  It wasn't "your son is a bad kid he needs meds" it was "he's having some troubles in class, you may want to bring them up with his doctor next time he goes."  None of these issues were a surprise to us, we were noticing them at home.

Luckily, he had a well-child check up not too long after that so we spoke with his doctor.  The doctor (whom we feel is a GREAT doctor) felt we should see someone in the Behavioural Health Department at the local children's hospital...and I'm glad we did!

After over 4 hours of testing, interviews with his teacher at the time, interviews with us...he was diagnosed with ADHD/combined type.  That means he has the inattentive and hyperactive types.  He was almost diagnosed on the Autisim Spectrum but, in the doctors words, "he is WAY too sociable"

Yeah, not really sure why that exclueded him as I know some very sociable autistic people but so be it.

Oh, and he is HIGHLY inteligent.  Reads and does math 2 grade levels above his actual grade level (yeah, he went up that extra half a grade level since the last post).  Scored in the 99.9 percentile in the visual/spacial reasoning portion of the test.  Oh, and they want the test repeated in 18-24 months after the initial test.  Why?  Because they think the current number it low due to his ADHD and impaired fine motor skills.

So I didn't go to our doctor and tell them he refused to sit still and focus and insisted he needed meds.  Trust me, the last thing I wanted to do was put him on another medication (he already takes one for his asthma and another for his reflux) but they help him.  He gets the lowest dose and we go up by very small amounts.  We have incorporated non-medical things (social skills group therapy, "fidgets", positive reinforcement, etc) with small success.

He isn't a bad kid, he isn't a kid who can sit still for hours at a time (especially without something to do), and he sure as hell isn't being a brat!  Don't give me a look because I don't yell at him for "acting out", he shuts down with loud noises so talking to him softly is the best way to handle dicipline with him.  And he's my kid, worry about your own life!

It was a long road to get the correct diagnosis for him.  Yes, I'm frustrated at the end of the day with him...I'm also mentally exhausted and have very little patience left.  Want to spend a day in my life?  Want to answer a million questions and hear a million stories that make no sence to you but are told with such passion that you want to understand them?  Want to constantly be on alert to make sure your son doesn't hurt himself because he doesn't remember he needs to think before he does and says something?  Oh, and don't forget that you still have another child who has her own special needs.

I want to get my son a t-shirt I saw, it says "Spend a day in my brain before you say I don't need meds"  Truer words have rarely been spoken.

So for those doctors and parents who over-diagnosis and use the diagnosis as an excuse...thanks for making it harder on those of us who are dealing with an actual diagnosis and trying to raise our ADHD kids to not blame their disease on being a brat.  Jerks.