This is Our Autism…Revisiting a previous Post

Back in June of 2011, I wrote : “Autism is love, Unconditional, deep love, stronger than any meltdown, bigger than any low. It is a love that keeps me going even on those days when I want to give up. It is a love that enables me to pick up the pieces, calm him down when he falls apart, to fight with doctors, to stand up for his rights at school. It is a love that is like nothing I have EVER known in my life.” as a conclusion to a Post titled “This is Our Autism” which was in response to a question a Fellow Autism Momma, Blogger, and Military wife, who also happens to share the same first name as me posed. The question “What is Your Autism?”

I Have been doing a lot of thinking about this again, in light of something that is going on in the Autism community. Suzanne Wright, co-founder of Autism Speaks, and grandmother to an autistic child, took time just this week to call for a National Autism Plan, based entirely on her opinion (which, therefore, is the opinion of Autism Speaks) that autism has “stolen” three million kids, and is making those kids’ families miserable. Here is a snipet of what she has to say….( You can read the full post Here, but PLEASE if You do….Take the time to read the COMMENTS, to hear the voices that are speaking out.)

Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house.  That is – if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes?  Climb the furniture? Raid the refrigerator?  Sometimes – the silence is worse.

These families are not living.

They are existing. Breathing – yes.  Eating – yes. Sleeping- maybe.  Working- most definitely – 24/7.

This is autism.

Life is lived moment-to-moment.  In anticipation of the child’s next move.  In despair.  In fear of the future.  

This is autism.

I am angry, The above comments made by an organization claiming to speak for my children, my Family, and so many others in the autism community has gotten it SO wrong. Am I saying life with Autism is easy? NO! But it is not something that needs fixing, or  a cure either. Yes there are times when my son wanders, and my children climb on furniture, and raid the fridge…..but Guess what, That is Part of having kids! I can remember , as the oldest of 4 kids growing up….Couch cushions strewn across the floor became rocks and if you stepped off onto the floor, You melted in Hot Lava, so we jumped from cushion to cushion, couch to chair…you get the idea.

When my non verbal child wanders, it scares me to death, BUT I have learned ways to keep Him safe, and still allow Him to explore the world We live in. I have learned to read His cues, and He has found ways to let me know “hey, mom, I am done and I need to go home”.

Autism is not, and never will be the end of all hope. My children are amazing, brilliant individuals. My daughter draws the most amazing artwork, a very visual and creative thinker. My son can make my computer do things I had NO clue it could do. They are NOT Broken!!!!! God made them special JUST the way that they are, and for an organization like Autism speaks to take the power it has, and irresponsibly feed the fear and lack of hope that society piles on families goes against everything I have fought for. I am not saying that it is easy, FAR From it. I  sadly lament not enjoying the parenting experience I always wanted and thought I’d have; birthdays, school, church, Dances, Concerts, slumber Parties, any social gathering for that matter, even bowling or going to the grocery store can feel like I’m being beat by this awful disease! I have days when I just curl up and cry, When I listen to friends complain about how their teenager spends too much time on the phone, or breaks curfew, is over board boy crazy, ect, and I look at my daughter who seems to have no interest in boys, didn’t ask for a cellphone until she was 15, and still RARELY uses hers, doesn’t live at the mall. I am Thankful she has a firm grip on who she is, and that she doesn’t look to her peers for acceptance,or approval, but I would be lying to you if I said I didn’t sometimes ache for those “typical mom moments”. There are sleepless nights, and meltdowns, sensory issues, and trials and hardships…But nothing in life is easy, and a little love and patience goes a long way. Sometimes I feel like I mourn the death of the parent I would be as much as the child I thought I’d raise. I know my Husband mourns those Father son bonding moments…Football, Riding dirt-bikes, ect. , and I know that there are things I will never be able to do with my daughter, like take her to see her favorite Boy Band in concert…it’s too crowded and too loud. There are days when I actively plan ways to live longer and take care of myself better because I know I have to be here to take care of my son. No one else will ever be willing or able to do it. Some people have the luxury of money or extended family to rely on, many of us do not. Should we make the best with what we’ve got? Absolutely, but that doesn’t mean pretending to the rest of the world that it’s a “gift” or anything short of an ongoing challenge. They don’t advertise Boot camp as a Glorious Vacation in Paradise, neither should they make autism out to be just something “different than expected”. That would also be completely irresponsible & untrue. Autism is a spectrum, and there is no One autism. It is challenging and some days it seems down right impossible, BUT it is NOT the end of the world.  There was a time when I lived in fear of what tomorrow may hold, BUT I have learned that when I focus on the unknown and worry about tomorrow I miss today’s joys. My children deserve to be loved, and accepted for WHO hey are, not shunned and feared because somebody only hears the word Autism. To say that my family is not Living, that Autism will break me, that my marriage will fail because Autism causes too much stress is fearmongering, and there is NO PLACE FOR IT!

Autism is NOT the end of the world.

Autism IS beautiful

Autism is NOT Despair

Autism IS looking at the world differently

Autism is NOT a disease that is contagious, or in need of a cure. My kids do not need Fixing. They may need help in some areas, and a little extra support in others, but they do NOT need to be cured, or fixed.

Autism is Different, but NOT Less…

So, this is a glimpse at My Family…..and Yes, We ARE Living, ENJOYING the moment to moment. Because Life is not the Breath You take, It’s the Moments that Take Your breath away!

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and, one more….

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Because the statistics say we should have divorced YEARS ago…I mean, Dual Military, 2 Children with Autism, Oh, we married too young, yeah, we have heard it all…all the reasons why we would never last, and I am not saying Our marriage is perfect, FAR from it! we have our ups and downs, but Autism has not destroyed our Marriage, in fact I think it has drawn us closer as we work together to make sure our children know that they are NOT broken, to give them the best love and home we can.  We are committed to each other, and to our children. When a mountain comes up, we climb it together. We have weathered many storms together, but To say we are just barely existing, ready to break at any moment, Autism speaks, You could not be more wrong. We don’t want or need pity, or fear. There is no place for fear, Only love, Hope, Joy, and Faith.

1 Corinthians 13: 3-7 {The Message}

“If I give everything I own to the poor and even go to the stake to be burned as a martyr, but I don’t love, I’ve gotten nowhere. So, no matter what I say, what I believe, and what I do, I’m bankrupt without love.

Love never gives up.

Love cares more for others than for self.

Love doesn’t want what it doesn’t have.

Love doesn’t strut,

Doesn’t have a swelled head,

Doesn’t force itself on others,

Isn’t always “me first,”

Doesn’t fly off the handle,

Doesn’t keep score of the sins of others,

Doesn’t revel when others grovel,

Takes pleasure in the flowering of truth,

Puts up with anything,

Trusts God always,

Always looks for the best,

Never looks back,

But keeps going to the end.

Dakota~Heart

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Autism Awareness~30 Days of Snapshots 2012: Day 1

Last year for Autism Awareness Month I did 30 Days of Snapshots, Inspired by This Quote from a fellow Momma Blogger…

“To me, awareness is a picture.  It’s a montage of snapshots and video clips from the small moments that make up the life of a person with autism.  Littered within this media are the big and small moments; the moments that melt your heart and those that test your resolve; the moments that capture the ordinary and those that frame the extraordinary. They’re the snippets of video that you proudly post on YouTube for the world to see, and those that you preview through the view finder on your camera and ultimately decide to delete because they didn’t quite catch your child at their best.

To be aware of autism one must have that complete picture, because awareness is the sum total of these images.”(From red shoes, Autism Blues)

I LOVE the concept of looking at Autism in this light. Those who know me, know I NEVER ( well almost never) go anywhere without my Camera. It is always ready to capture those moments. If You would like to go Back and see the posts from Last April, They are all Linked down the right hand side under the Title: Autism Awareness 30 Days of snapshots. I will be doing this again this year as well, so lets begin Our Journey shall we?

This year the CDC released “New” Autism statistics…..

Data & Statistics

Prevalence

  • About 1 in 88 children has been identified with an autism spectrum disorder (ASD) according to estimates from CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network. [Read article]
  • ASDs are reported to occur in all racial, ethinic, and socioeconomic groups. [Read article]
  • ASDs are almost 5 times more common among boys (1 in 54) than among girls (1 in 252). [Read article]
  • Studies in Asia, Europe, and North America have identified individuals with an ASD with an average prevalence of about 1%. A recent study in South Korea reported a prevalence of 2.6%. [Data table Adobe PDF file]
  • About 1 in 6 children in the U.S. had a developmental disability in 2006-2008, ranging from mild disabilities such as speech and language impairments to serious developmental disabilities, such as intellectual disabilities, cerebral palsy, and autism.  [Read article]

*Source: http://www.cdc.gov/ncbddd/autism/data.html

1 in 88

1 in 54

1 in 252

1%

2.6%

1 in 6…

staggering Numbers, but what I want you to know is this…. These are more than just numbers. They are PEOPLE. and behind each child, there is a family…loving them, guiding them, fighting for them at every twist and turn. ( see my Post  1 in 88…not just numbers, PEOPLE ). This year we confirmed that we have not one, but two children on the spectrum….

Although April is Autism Awareness Month, our families live with autism EVERY day….

Autism…Different but NOT less…

Miracle League…Because EVERY child deserves a chance to play Baseball….

This year, like last year as you join me on this 30 days of snapshots journey I hope you will see that…

Autism is not a Label ( Those go on soup cans) but a Diagnosis….

The words “Your child has Autism” is NOT the end of the world, but an open door to look at life in a different perspective, to take things at a slower pace, to cherish the simple things…

That the child in the store kicking and screaming may not be just a “Spoiled brat”, but may in fact be in pain due to sensory overload….

that the frazzled parent trying to calm said child may need a helping hand, and certainly does NOT need you to stop and stare, give dirty looks, or make snide comments like “Can’t you control your child?” or “you should have left that brat at home” ( and the list goes on…)…

April is Autism Awareness month….

what can YOU do to reach out and spread the word….

to help a family walking this journey…

to educate yourself…

Remember people on the autism spectrum do not need to be “Fixed”. They are NOT broken, and do not need to be forced to fit into society’s idea of how we should act, talk, think, look, ect….

They need acceptance, compassion, and understanding…

not judgement, criticism, and prejudice.