Friday, March 23, 2012

Mr. Gosling

Ok so another parent with a child on the spectrum is a blogger and started this weekly friday bit where we create our own Special Needs Ryan Gosling picture. It is hilarious and so fun! here is what she said in her first post about this....

"The fact is a fair portion of parenting is not fun and 0% funny.  I would go a step further and say that parenting a child with special needs is even less so.  Many of us cannot take traditional vacations with our family either because finances are too tight from all the therapies, medications, and various interventions or the disruption of our child(ren)'s schedule would be too traumatic and make the time away fun for absolutely no one.  So we have date nights with our significant others at home after the kids are in bed.  We rent movies and have a picnic on the floor in the living room.  We tag team parent to that when one is caring for our child the other can get some R&R away from the house.  We love hard and we learn to compromise.  But for those exact same reasons we burn out from stress at an alarmingly fast rate.  Think Wylie Coyote trying to outrun the rocket tied to his tail and you'd have a pretty good example of what it feels like."

i have been LOVING these. they are hilarious because it is what we parents of special needs children deal with almost DAILY: fighting with insurance, sleep disorders (aka NO SLEEP), medications, therapies after therapies after therapies, special diets, doctors every kind you can think of (gastroenterologists, developmental peds., neurologists, somnologists, nutritionists, herbologists, ENT's and any other kind you can think of), IEP, regression, Stimming, OCD (REAL OCD, not the kind where you do something weird and claim "oh i have ocd" like its cute or something), sensory processing i need to continue? i could go on for PAGES. These little pictures are just a little comic relief for our actually really sometimes depressing and hard to accept reality of what we are responsible for and have to fight with daily. THANK YOU SUNDAY!!

So here is mine for this week....

Here are a few of my favorites that Sunday has made....

Thursday, March 15, 2012

ya FEEL me?

I am lucky enough to be working with Amy Hummell and Autism Speaks (ill write more about that in another post) and was able to attend an meeting at SARRC and had the opportunity to listen to the amazing Clara Lajonchere, Ph.D., (Vice President of Clinical Programs, Autism Speaks) and Christopher J. Smith Ph.D. (Vice President/Research Director, SARRC). I sat there for a few hours listening to all the new research studies and advances and findings that are being made in the Autism community.

I could have sat there for days listening.
I was enthralled and taking notes and soaking up every single word.
I didn't want to miss a thing.

My point is, as I sat there in a room full of other parents living with autism in their homes, I finally realized something. This is my life.

I was joking with haleigh brownlee recently about when you have those surreal moments and you look at yourself and think, "how did I get here? where did I take a wrong turn? how did my life end up like this?"

I don't necessarily feel this way about Autism, but the realization I had during this meeting was,

"This is my life now." For the rest of my life I will be attending these meetings, I will constantly be searching for more information.

I am starving for information.

I hope this doesn't sound negative. I DO NOT think of my life negativly, AT ALL.

It is just not at all what I imagined when I was pregnant.
Its never what anyone imagines.

NO ONE dreams that they will one day be filling their days with research, therapies after therapies, dealing with learning how to live with autism and striving to help your child live happily and most of all comfortably.

But the reality is, that IS my life.

Its been almost year since autism has entered our lives and it JUST hit me today

During that meeting, it took everything in me to keep from crying.
Not out of sadness. but out of relief.

I have felt alone. So alone.

NO ONE, no matter how hard their sweet little hearts try (I am being sincere, I seriously appreciate all our family and friends and their efforts to love and understand) can not relate or try to understand what we go through living with autism in our lives.

Today for the first time I was in a room full of people who knew EXACTLY how I felt.

I felt understood. i FELT relief. i felt HOPE.

For the first time in a LONG time I just FELT something other than jealousy, guilt, anger, and sadness.

I finally belonged. I felt empowered, brave, and proud. i felt NORMAL. awwwh to feel NORMAL again, I can't begin to tell you how it felt.

I met some amazing women who I can not wait to get to know and learn from.

For the first time in a LONG time, I feel like I will be ok. It does NOT make those hard (and i mean HARD) days, like today any easier, but it gives me hope.

Post Script...

i just want to thank my mom. today was one of the hardest days i have had since recker was diagnosed. today was one of those days that I begged the question WHY ME, WHY RECKER, WHY US? one of those days where i was selfish and whined that ITS NOT FAIR. Its just NOT FAIR. one of those days when i didn't know how to i was going to get through the day. and my mom LET ME. she let me sob. she sat there and cried with me and didn't try to tell me that i was going to be fine. she just let me feel how i was feeling and that is exactly what i needed. i just needed someone to listen. i love you.