Autism Mom Copes Post~

Good morning friends, Happy Friday.

You know occasionally I interrupt my crafting wonders (lol) for a

REAL LIFE post- or Autism post. 

I think this photo says it all- it encompasses every person his age he meets- 

he melts down very loudly and  the other child looks at him like...

what the hell man? LOL It's pretty cute because this little boy is

very sweet with Gage- but we all feel this way at times when he is screaming. 

As some of you know we STILL cannot get the school to acknowledge

my son's Autism or give us any assistance in any way because his grades 

are very good. He came home with honor roll again. 

It's funny that they admit he has dexterity issues and clearly social

issues but since he has good grades they are not responsible to give

any assistance. So now I let him fail- or we go on with no help. 

I find neither a viable option. I really despise TN schools right now. 

So the fight and struggle, frustration, and despair continues.

On the bright side we went to Ohio to visit friends and had a day of

sledding which I expected to be mayhem of meltdowns, but I was 

surprised with only 2 slight meltdowns. 

I think the sledding was freeing for him and he loved flying down the hill.

I so love this boy! LOVE!

 He has always loved swinging and I think sledding gave him great peace.

 I also think being around friends who don't judge and accept him 100%

makes it so much easier. It was a wonderful trip. 

 Here he is with a strange dog names Biscuit- this was one of his meltdowns

the dog acted like he was giving him the led but in fact ran off with it! LOL

My little man did not find this nearly as amusing as we did on the hill above.

So two things caught me this week and I mean CAUGHT ME!

This is the first- before we had a diagnosis of Autism I admit I allowed

people to say things about my son and "tolerate" him. They would say

"well I would have him over but he cries" or "I would like to have him around

but it's just too hard". OR "I will take your other kids I just can't handle him".

What I have realized is- the ONLY people who should be in our family 

or friend circle are those willing to take the extra moment to see how incredible

my AUTISTIC son is. And if we have no one but our family left

then so be it, because if you cannot LOVE a child with special needs, 

then your a giant dick anyways! 

And we are so very blessed with people who go out

of their way to love my son and they see how amazing he is. 

So I know those people exist. Unfortunately that means the others

just have to go find their perfect friends and love them, because

clearly we are not good enough for them. 

The second thing I noticed was this.

Guess what? ALL my children always have been and always will be a blessing

so NO my son is not giving me a hard time, he is coping the best way

he can. He is not some malicious child out to do harm, he is overwhelmed,

over stimulated, and has so much pain and so many sensory issues

going on that it's like a torture chamber. 

So get up and help me or get over it and walk away- because I love this

kid and I am protecting him NOT spoiling him.

Yea, I am a little rough today but it's been a long week and momma

feels it all too, it just goes into her heart and sits there while she's 

dealing with everything else going on! :) 

Muah! Love ya thanks for stopping by and listening to my Autism Life!!

Autism Testing And Emotions: Harder On Mom Or The Kid??

Good morning friends, 

I am on my way to Milwaukee tomorrow with friends today and yesterday

we had some extensive testing done with my sweet boy. 

We want him to join a study for Autism that will help him relate and deal

with his peers better. So we drove into Nashville and spent the day being

hooked up to monitors, tested, and prodded. 

As all this happened I was SHOCKED not at my son's reaction

or the actual tests but to my reaction.

I started out the day with my son in tow, dropping off my husband at work

so we could save money on gas. Then heading to the maze of medical 

buildings and trying to find my way. In the mean time a friend of mine

called and asked how we were. 

I explained that my son was nervous for the tests and she INSISTED 

on meeting us in Nashville (40 minutes from her) and being there to

sit with us. I didn't think anything of it to be honest.

Never thought about anxiety or anything but making sure my son was OK.

We began and I left him in the room with the Dr. for a 2 hour and 45 minute test. 

My friend showed up and we laughed and talked. 

But the big test wasn't ready yet- the one with all the 

electrodes and monitors for his head. He was extremely nervous about

this one. I shared a photo with him and that made it worse. 

But they put it off, so we were relieved. 

We rushed for a fast lunch because we were running behind, and 

went to the next medical building for the big test. 

This involved a few BIG Autism NO's for my son. 

#1 Getting WET on his head and face. 

Getting wet has been a HUGE issue since birth with Gage, it usually

sets him into hysterics. It is NO JOKE any Autism mom know there are

those certain points you just avoid at all costs and water is our point!

#2 Being covered in a hat.

What can I say the boys hates hats- or any reference to a hat. A visor

is a MAYBE but  hat might literally kill him...it's that bad. 

#3 Not knowing the Dr. helping him. 

He needs to meet any Dr. we have ahead of time. 

He just likes that security, He is ok with new people but not doctors. 

I knew we had 3 bridges to cross. The Dr. one I had covered because I 

explained I would be there. But the wet issues....well it was a bit much. 

When they brought in the "wet hat" which would be NOTHING

to someone else looking in- I could hear and see the panic begin. 

And to be perfectly honest seeing him panic does not help me.

I was THAT mom who held her baby because she could not handle the crying. 

Hey I don't regret it either. It's just me. 

So as he panicked he asked for his friend to come in and sit with him

and bless her little heart, she sat there for nearly an hour in what had

to be the most uncomfortable chair I have ever seem

This extraordinary girl from an extraordinary family

was like a Florence Nightingale no lie. What a blessing. 

But here is where I surprised myself...seeing him all hooked up and them

putting all that on his little beautiful head....it got me. Right in the kisser. 

I lost it...the tears came and my anxiety set in. 

I wasn't expecting that....yes I know in my head it is ridiculous, it's simple

painless test. But every one of those little patches represented all those steps

we have taken- all the endless steps we have to yet take...those journeys we have to

go through, those journeys we have been through. 

The friends we have lost, the battles he will fight, the war ahead. 

The mission to not change my son but CHANGE THE WORLD AROUND HIM.

Just seeing him hooked up overwhelmed me. 

We are so blessed because it could be so much worse. I know this

and I know we will be grateful to have him always. 

He is my heart, my soul, my life along with my other boys. 

But there was something so final about the diagnosis seeing him all 

hooked up and taking these tests. This is where we are. 

I am not upset we are here but it's so final...this is our reality. 

I can't really change the facts now....I just have to learn to ask for support

(I suck at that), stand strong, and learn to FIGHT and keep FIGHTING.

I have to learn to lose people, and lose battles because in the end

we will win the war. But I have a feeling this entire experience maybe isn't

only going to teach and strengthen, my son- maybe

it's mean to teach and strengthen me as well. 

I would NEVER say my past abuse was a good thing but I know now that

it has helped me to prepare for the hard cold facts of life and helped me to

become the forged steel that I am not so I can be my son's shield....

and maybe that's not a  bad thing....