VENT ! Ok now Breathe in 1 2 3 ... Breathe out 1 2 3

For those of you that have the wonderful and blessed opportunity to "chat" with me on a regular basis you are aware of some of the "drama's" that have been occuring here over the last year concerning my youngest son.

Today I want to say ............

I HATE SCHOOL !

Seriously I am starting to think it's wayyyyyy overrated !

Ok Ok .. Now I will Breathe In , Out , In , Out ... Better now TY !

Of course education is important .. vital even.

It's the GETTING one that is not always as easy as one in this great country of ours is led to believe.

I had the sad experience of reading and listening to a story about a teacher in FL who had her kindergarten class "Vote" as to whether they should keep a student in their class.
5 and 6 yr olds. What the hell was she thinking ???

According to the Mother the teacher also encouraged the other classmates to give reasons "why" this student should be cast out. Even with their limited vocabulary they were able to come up with some very hurtful adjectives.

Not surprisingly this child has recently been tested for Autism or more specifically Aspergers disorder.
Aspergers is on the Autism spectrum. In laymans terms at the high functioning end.
I am not going to go into what it is or how it presents itself as most of my blogger friends that read this already know.

Thats amazing too as they have taken the time to educate themselves on it. Not because all of them had too personally but because they are our friends and family and have taken the time to try to understand our child.
I do need to note that "High Functioning" doesn't mean "less affected" it just means affected in a different way than others may be on the Autism Spectrum.

I am dealing with this myself as the parent of a "A child with Autism on the High Functioning" end of the Spectrum.

Fortunately for us with the exception of a few, we have had wonderful teachers.
Kind, caring teachers who listen to your concerns and try to address them.

That said it is my experience that the school districts themselves would rather spend tons of the districts tax dollars ducking and dodging the services these kids need instead of addressing them before it gets to that point.
They seem to forget that WE TOO are taxpayers in the district and are only asking for an appropriate education for our children by qualified teachers.
I can't even count how many times I have had to "educate" some of the professionals within the school district on just what Autism is.

Sorry crazy teacher lady in FL these kids are here to stay.
Deal with it and if you can't, then you need to find a new profession.
Preferably one that doesn't involve empathy for another human being.

FAPE (Free Appropriate Public Education) is a right granted to EVERY child not just the ones that you find "less annoying".
The services that should have been provided to that child in FL are now going to be on the front burner.
Sadly at the expense of the child and his family.

As I type we are still in that process ourselves. Trying to get an IEP together that works for my son and can and will be implemented as well.
It is frustrating beyond words but we continue to march on ... we have too, My son's future is depending on it.

Memorial Day

To the Max !

So today we finally reach the Max/Maintainence dose of Nicks Increlex treatment.

It has taken 3 weeks with 15 cc incremental increases each week to get to this point.

He now gets 46 cc of Increlex 2 times a day via injection. So far we have not seen any huge side effects, the occasional headache but that can be helped quickly with a shot of Orange Juice or a fruit roll up and sometimes a Tylenol.

Now one would think that after 3 weeks of doing this I would be comfortable giving him the injections by now.

Not so much 0_0

So I had read of a device called "Inject-Ease" on a IGF-1 message board ( yes there are message boards about EVERYTHING on the net ! ) and thought I WANT ONE .

Anything with the word "Ease" in it is MINE !!

It's a device that looks like a bloated pen that you drop the syringe into which then gets locked into place.

The good part of this device is that the "needle" itself is hidden from view so that everyone is less anxious waiting for the initial injection.

After placing it on the skin and giving it a few twists around to add pressure you hit the button to release the needle into the skin.

You still have to slowly push the plunger down to get the meds into the injection site but at least the needle is always delivered at the same depth and rate of speed each and every time.

The first time we tried it last night Nick was not impressed with the looks of it.

I think he was thinking the whole device was the shot and he wasn't having it.

After convincing him that it would be "better" this way he let me try it out.

It was almost as nerve wracking as the first shot I had to give him but in the end he was really shocked that it did seem to hurt less.

What I loved about it is that the amount of Meds in the syringe is also no longer visible to him.

This was starting to become an issue because he knew there was one more increase coming and he wasn't looking forward to it. (the med does sting some when going in)

So this morning with the first max dose cocked and loaded I gave him his shot and he never knew that the increase had taken place and I have no plans on telling him that either ;)

We haven't measured him yet to see if he has grown any. I really don't want to make him overly anxious having him anticipating "growing" everyday or week.

Not to mention everyone's height chart is just a tad different.

Normally this wouldn't be a huge deal for a child that is growing normally , but for a kid like Nick 1/4 inch is a huge deal to be off by.

He goes back the first week of July for a recheck and I told him we may wait til then to check on the doctors height chart so that we definitely know if its working by then he will have been on the meds for about 2 months.

...NOW if only they could make an "IEP-EASE" my world would be complete.

That is a whole other blog post in itself. 0_0

Leaving these wheels behind ....

Yes .. tomorrow I do believe I will take him for his learners permit.

I know doing this will put that skateboard on a shelf in the garage where it will now collect dust.

He is 16 1/2 and I have held him off as long as I could but it's time.

I must admit for somewhat selfish reasons too.

Hey I need some milk .. go get some.

Pick up your brother from school.

Do the Mickey D's drive thru run for me tonight.

AHHH to have another driver in the house besides myself during the week.

There are benefits YES but all the same ...

I know I will miss the skateboarding days.

ps .. thanks Mm for the picture posting tips !

Superman lives !

We have an ending to a previous drama.

My son's meds were approved by the insurance company !

Wooo Hoo !!

He can now begin "growing" again.

Thats the good thing ... the iffy part for him is just how that growing gets done and who is responsible for making that happen.

Me .. I am the one that "makes it happen".

Me, coming at him with the meds to make it happen which involves ultra fine needle injections 2 x a day.

It's not the kind of growth med that the athletes are using to improve their bodies and their game. If you are an adult and have already stopped growing, this will do nothing for you. Due to that there is only a limited number of years, depending on your childs age and development, that this therapy can be used and be effective. It will only work in children that have been diagnosed with Severe Primary IGF-1.

He has been prepped for this for months. We have talked at length about having to "get a shot" 2 times a day so that he knew there would be no delusions when and if it started. He is totally onboard for it because he realizes this is the only way to help him catch up in his height and be able to meet eye to eye with "Joe" at school.

Joe the kid that has come up with all kinds of descriptive monikers (insert sarcasm here) for his height.

The starter kit of medications arrived last week. It was shipped overnight in a HUGE box with all kinds of goodies in it from alcohol pads to needles to the actual medication.

Yesterday afternoon we went for our "shot training".

I was quite nervous, afterall I am not the RN here my sister is. Why isn't she here ????

The instructor for this class was wonderful, young gal in her 20's.

She is an insulin dependent diabetic and is comfortable with the drill and very at ease with showing others how to do it.

She showed me how to prepare the injection. This took a few practice runs because the first 2 times I bent the needle. SIGH I guess I was more nervous than I thought.

My son's confidence was waning while he watched me screw that up 0_0

Finally after practicing the actual injecting into a rubber pad that is supposed to resemble the feel of something human I was ready for the real thing.

My son was nervously wiggling all over the exam table as I approached him with the needle.

With the instructors help on how to pinch the skin to prepare the area my son began saying ..... OHHH NO THIS IS GONNA HURT !

We counted to 3 and then I went for it.

His eyes were as big as saucers as I know mine were too while I waited for his reaction.

After finishing injecting the medication and removing the needle he said "Thats it ? "

He kept looking at his arm trying to find the spot where he had just been injected and said

"Wow that hardly even hurt !"

That is as close to a WAY TO GO MOM as I was going to get.

I felt the weight of the world being lifted at that point as the instructor said I had done a great job.

After leaving the office and watching him for possible side effects I felt more confidant that I could do this .. heck I have to do this, I am just glad it wasn't as traumatic for my son as I feared.

This morning as I was preparing his injection my husband was just about to walk out the door on his way to work.

I said .. You know , you have to learn how to do this too.

He responded by saying "Yeah I know, I will" but I could tell this was not something that was on his list of things to do right away.

I have a feeling he wants to see that our son will really be OK with me giving the shots before he has to do it.

I have a few other caregivers that will have to know how to do it too in the event that I am not able too some days. I know they are nervous as well but trust me folks if I can do this ..... anyone can !
Or ..... Call my sister !