Dear Special Needs Parent

Dear Special Needs Parent,

I believe being a parent to a child with special needs is the hardest job on the planet. We usually put our needs and wants on the back burner in order to help our children succeed in life. I am writing you today to provide a wake up call. Take some time for yourself. Stress for a special needs parent is often unimaginable, take time to try to de-stress. Most important thing, take care of yourself health wise. See a doctor on a regular basis. As our job is the hardest on the planet, it is also (in my opinion) the most important. We need to do everything in our power to take care of ourselves so we can be around as long as God sees fit.

God Bless,
Lee

Siblings and the ripple effects of autism

  Jenna is my youngest and she is what most people in the special needs community would call "neuro-typical".  Jenna does have a couple of genetic diseases which are Towns-Brock Syndrome and Chiari 1 Malformation.  From time to time we have a health crisis with her which requires a trip to hospital or to a specialist but for the most part she is your average (not average to me, but awesome) 5 year old little girl.

  The thing that sets her apart from most of her peers, except that she is just extra awesome, is her brother has autism.  She on a daily basis deals with meltdowns, fits, and all of the other tough stuff that comes with having a brother with ASD.  Jenna does the above with grace and usually a smile on her beautiful face.
  Our family is often consumed with autism and all the needs that come with it.  I often feel that Jenna gets the short end of things. I am trying my best to have some things that are hers and just hers.  Somethings that make her feel special and give her chance to be Jenna, not just Major's little sister. Thankfully my aunt has helped with this and we enrolled her in ballet/tap classes a few months ago. She is over the moon, in love with dancing.  I smile when I see how happy she is when she dances.

I love you Jenna Lee.

Swim Lessons

Major is taking private swim lessons at the Y. Private because he has tried to take the group lessons before and could not handle it. Major is not taking the swim lessons in order to become some great swimmer (but if he does that would be a huge bonus). He is taking the lessons for the therapeutic aspect of it, at least that's how I see it. Major loves the water and I figured he would be more willing to work his muscles more if he was swimming. Major has his rough moments at swim class but he is willing to go. If nothing else at least it is an opportunity for a successful outing.

RASCAL FLATTS - I Wont Let Go lyrics

 It's like a storm
That cuts a path
It's breaks your will
It feels like that

You think your lost
But your not lost on your own
Your not alone

I will stand by you
I will help you through
When you've done all you can do
If you can't cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let go

It hurts my heart
To see you cry
I know it's dark
This part of life
Oh it finds us all
And we're too small
To stop the rain
Oh but when it rains

I will stand by you
I will help you through
When you've done all you can do
And you can't cope
I will dry your eyes
I will fight your fight
I will hold you tight

And I wont let you fall
Don't be afraid to fall
I'm right here to catch you
I wont let you down
It wont get you down
Your gonna make it
Yea I know you can make it

Cause I will stand by you
I will help you through
When you've done all you can do
And you can't cope
And I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let go
Oh I'm gonna hold you
And I wont let go
Wont let you go
No I wont

 

The above song is quickly becoming my anthem for my relationship with Major.  It was a TOUGH weekend. Lots of frustration for everybody. Not knowing how to help Major through meltdowns or doing the wrong thing, which in turn made the meltdowns worse. I am learning but it is hard. I am determined to stand by him and be the best mommy I can be. Autism will not prevail!!! Some how by the grace of God autism will not win. With LOTS of help from God I will figure out how to make things easier for Major. If that means I need to become the most organized and schedule oriented mommy out there I will. Even though every fiber in my body fights it, we will win. I love you Major Austin Klekotka.