This is Autism

My last post was titled What is Autism. My message was mostly about the statistics to help those whom don’t know very much about autism as well as for those with new diagnosis. If I were to write it again today I would add more, a lot more!!

Recently Autism Speaks went to Washington D.C. to call for a national autism plan. I agree with this topic, there needs to be a national plan. There needs to be more funding for therapies, there needs to be more recognition and more awareness. Suzanne Wright, a co-founder for Autism Speaks, wrote a letter titled a call to action . If you have time, I encourage you to take a minute to read it. For me, her letter is a bit unsettling.

The Autism community isn’t happy about this letter. Frankly, they are outraged!  Outraged with the fact that the only voice that was heard was the voice of a grandmother (Suzanne Wright) and not the voice of an autistic child, adolescent or adult. Some of her words: “living in despair; fear of the future; exhausted, broken parents; lost, helpless, burdensome children; a national emergency”. My thought is parenting any child typical or not leaves you with moments of despair, exhaustion and at times the feeling of helplessness. She paints a pretty scary picture of what autism is and although it is scary and hard it is SO MUCH MORE! Autism does not mean the child is doomed, autism does not mean that there is no hope and autism does not hold all the cards for many of these words.

When I first learned that Jake was on the autism spectrum it was scary, I didn’t know what to do, I didn’t know where to turn, and for a long time I thought perhaps Jake might be misdiagnosed. Jake didn’t fit the picture of the one I had in my head of what an autistic child should be or look like. Jake smiled all of the time (still does), through my reading I was told Jake wouldn’t smile much, I read that there would be no hugs, there wouldn’t be much laughter nor would there be any empathy. Jake is all of these.  A lot of what I read didn’t match my boy. When you go to the websites to find out all you can about autism they tell you the negative side of autism and you have to dig and search to find articles about the positive side of Autism. After reading more I realized that Jake was not misdiagnosed, I realized there was more to Autism than the fact that Jake lines up his toys, walks on his tip toes or spins continuously.

There is more to Jake than his label. If I were brand new to the spectrum, her letter would scare me, her letter would lead me to believe there is no hope for my child. Seriously, I would think he was doomed. But the community spoke up about what autism really is…check out some of these posts by autistic children, autistic adolescents, autistic adults as well as parents like myself.

Autism is SO much more than statistics and numbers.  This is Autism:

smiles and giggles

hugs, kisses and tickles

incredibly smart, always trying to figure out the problem

quiet, hiding under a blanket

playing peek-a-boo

reading the same stories over and over

running, crashing, jumping, spinning

singing

lots and lots of cuddles

Jake will always have struggles but I believe these struggles will help mold him into a strong individual. Jake will have to work hard for each and every thing he wants; this will make him determined. Many things will not come easy to Jake and he will have to push himself to figure it out; this will make him a fighter. Jake is full of smiles and his heart if full of love; this will lead to compassion.

As I’ve said before ~

Autism WILL not define Jake.  Jake will define who he is and who he wants to be!

This is Autism!!Jake_Gordon83113 (4)

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What is Autsim

I was thinking about what to write today and the word Autism kept coming to the front so I thought I would share with you some information and current statistics from Autism Speaks:

  • Autism now affects 1 in 88 children and 1 in 54 boys
  • Autism prevalence figures are growing
  • Autism is the fastest-growing serious developmental disability in the U.S.
  • Autism costs a family $60,000 a year on average
  • Autism receives less than 5% of the research funding of many less prevalent childhood diseases
  • Boys are nearly five times more likely than girls to have autism

The numbers will be different in a year or two, they have already increased since Jake was diagnosed. When Jake was diagnosed in 2011 the statistics were 1 in 110.

There is no conclusive one reason as to what causes autism. One of the first myths I heard was autism was caused due to poor parenting; cold and distant parents. There are a ton of these myths out there from refrigerator parents to vaccines to the environment. As of now there is not one factor that is listed as the sole reason a child is autistic. I’ve researched this trying to find an answer as to what caused Jake’s autism. Every time I read a new study or read older studies they just don’t apply to Jake.  I think for some children (and this is my opinion only) that vaccines do cause their child’s autism, food allergies have caused their child’s autism and even the environment caused their child’s autism. I could go on and on about all of this. If you were to Google causes of autism it would take you days to get through all the information that is out there.

Here is what Autism Speaks has to say:

Not long ago, the answer to this question would have been “we have no idea.” Research is now delivering the answers. First and foremost, we now know that there is no one cause of autism just as there is no one type of autism. Over the last five years, scientists have identified a number of rare gene changes, or mutations, associated with autism. A small number of these are sufficient to cause autism by themselves. Most cases of autism, however, appear to be caused by a combination of autism risk genes and environmental factors influencing early brain development.

As I said before, I am not 100% certain as to what caused Jake’s autism; it could have been my age (I was 40 when I had Jake), it could have been the environment. I have researched, read countless books and asked a lot of questions. What I’ve determined is Jake was born with Autism, he was different the moment I laid eyes on him. As his mother, I could just tell something was “off”. I may never know why and at this point, where we are right now, I am going to say it doesn’t matter. Jake is Autistic. We work hard. Jake works  harder. Jake will have struggles, he will always have to push himself a little harder than his typical peers and he will face many obstacles in his life.  Autism is scary but it is a part of who my child is.

 Autism WILL not define Jake.  Jake will define who he is and who he wants to be!

*If you want to learn more about Autism go to the links posted above.  Autism Speaks the world’s leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families.*

Good Morning :)

From the beginning Jake has loved music!  Before he could talk his face would beam and he would move his body as best he could to the beat.  Now that he can speak he loves to sing along to his favorite songs and I must say it is too cute and really awesome!  Jake seems to love all types of music from classical to rock to contemporary Christian.  Jake will find children’s songs on his IPad and sing along; currently he loves all of the nursery rhyme songs — ABC’s, Mary Had A Little Lamb etc.  And he loves listening to the radio and when a familiar song comes on he loves to dance.

About a year or so ago a Christian artist, Mandisa, came out with a song called Good Morning.  Good Morning Song  If you ever want a song that will wake you up and make you feel good this is a great choice and one of Jake’s favorites.  Jake calls it the “uh-oh song” and the smile that shoots across his face when he hears it is hard to describe.  Maybe infectious is the right word, when Jake smiles and starts singing I can’t help but smile and sing along too.  In the middle of the song there is a rap portion (not really, but if you listen to the song you’ll see what I mean).  Jake has been trying for a while now to sing this part.  Last week on the way home from school Good Morning came on the radio and Jake says “I wuv this song”!  He has his hands in the air and clapping to the beat and then the song gets to the rap part and the boy starts singing along….word for word.  As I am driving and listening to him sing all I think about is how awesome this is and tears fill my eyes!  It is no small success, this is huge!  I take a minute to see the enormity of this moment and wish I wasn’t driving so I could have recorded him singing this…I was amazed.  What amazes me is how a year ago he only knew a handful of words; a year ago he couldn’t sing along to this type of song and here he is today not only singing the correct words but clapping to the beat and my favorite…car dancing 🙂

I struggle a lot with Jake’s autism.  There are days I feel as if I can’t handle this anymore but there are also the days where I wouldn’t want it any other way.  Autism has made me slow down, take a breath and see things I might not see otherwise.  Honestly if given the chance I wouldn’t change anything because that would mean changing who Jake is as a person.  There are positive sides to autism, for me it has made me stop in the middle of a busy day and take joy in the simple act of clapping to the beat, singing along with a song and the little voice that shouts “I dancing”.