Ephraim says….

Does your child know they have autism? Do they know what it means?

I asked Eph, my 9 year old, what he thinks about autism and his life.

Ephraim says….

What is autism?

“Autism means I don’t think the same as other people do.”

What does it make your everyday life like?

“Sometimes I kind of miss what happened before and can’t happen again. I worry too much about things I used to have.”

What is good about autism?

“Autism is good because I like what other people don’t like. Sometimes I just am happy for no reason and I can just run and bounce around.”

What is bad about autism?

“Sometimes I imagine things that are scary and I can’t stop thinking about them. I feel very sensitive and I get sad easily.”

Do you like having autism?

“umm, a little bit.”

Do you dislike having autism?

“No”

Would you make it so you don’t have autism if you could?

“No way. I wouldn’t make it go away because I wouldn’t be me and I only want to be me.”

Ephraim has known he has autism since before his official diagnosis. His answers make a lot of sense. Ephraim is a very sensitive boy and he cries easily. If he thinks you are upset with him he may cry. If he thinks you are mad at him he will cry. If he thinks you are hurt, he will cry. He has more empathy then most people I know.

His memory is scary good, and it is often sad. He will think about things and they get him down. One odd recurring sadness is a pair of teething keys, he talks about them often and always wishes he still had them.

Ephraim is a little lover. He is affectionate and has to hug every person in the room before we leave any place. He is the sweetest kid and people take to him easily.

Ephraim never questions why he is the way he is. He has never asked why he was different he just enjoys being him, most days.

Some days, being Ephraim, can be horrible.

He doesn’t talk about the days where he can’t control himself. The days where everything gets to be too hard. The days where he screams and cries and lashes out. The days where he tells me he is the worst child in the world and that he should die. Those days, we like to pretend don’t exist. When everything overwhelms Ephraim, he injures himself. He pinches and bites and hits and screams. Those days kill me a little bit more every time. Luckily those days don’t happen often.

Often we talk about what it is like to raise a child with autism. The parents of ASD children gather on social media, reaching out for a connection. We need someone to understand what we feel. The horror of the bad days, the joy of the good. We need advice on therapies and finding doctors. We need to vent about the IEP process. We need to be able to talk about poop.

The thing I have noticed in the many years I have reached out, we don’t talk about how they think of it very often. We reach out because we are tired and exhausted and we need someone to understand how very hard it can be. Let’s take a moment and be sure we notice how our babies feel about it though too. Many times they are just as tired. They are just as scared. They need to be understood too.

Ephraim wants you to know….

Sometimes is is hard to have autism, I don’t like to be sad and scared. Sometimes it is awesome because I like to play and I like to be happy and I have a lot of happy in me.

A little share from our family to yours.

2014-03-26 19.43.55

Always Love,

Domi

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