If he could only answer “why”??? Ugh, I don’t like autism

People always ask me about my frustrations with a child on the spectrum. I tell them it really depends on the age and stage of William at the time. Sometimes the frustrations we deal with are based on his attitude and how his day was and all those typical criteria…sometimes we’ll deal with him throwing things, other times we’ll deal with him not eating a certain food (although the week before he couldn’t stop eating it)…but I think all parents go through that–it’s called parenting.

But the frustration that I would say is constant and universal is the frustration of communication. Oh if he could communicate better with us how much easier would it be. I shutter to think. Good-night-nurse there have been so many times when we need information and need him to tell us what the matter is and he can’t…we’re frustrated because we just want to help and he’s frustrated because he’s trying to communicate and he just can’t.

It rips my heart into pieces when he’s standing there crying, screaming, yelling, kicking…whatever and it’s all caused by his inability to communicate his needs with us. I don’t like autism.

If he could only answer, “why” I can imagine that it would be so much easier to deal with him and the hated spectrum.

The other day William and I were alone at home and he was eating or doing something well and I told him how proud of him I was and asked if he wanted to “airplane”…well that’s a huge treat for him (I pick him up and spin him and float him like an airplane–he loves it, i love it…he’s not too heavy yet)

So he said “YES!” and off to airplane we went…he was laughing and then we chased and we just were having a great father/son moment. I put him down and he went off to do something else…then about 3 minutes later he comes back and kicks me…he tries to bite me…he’s trying to hit me!

“Why are you doing this?” I ask…over and over and over…he just starts crying and is just all upset. WTF is going on? Was he hurt? Was he sad? Angry that we stopped playing?

The special moment was ruined and I made him sit on the stairs (he does not like that) and he starts kicking the wall and on and on…WHY DID HE DO THIS?

I don’t know and he can’t answer “why”…if he could then maybe we could’ve talked about it. Maybe I would’ve understood how I did something to hurt him or make him sad.

This happens often in our daily routine…he will get his feelings hurt, he will bop his sister on the head or do things to really dampen the mood and moment…I don’t think he’s trying to be a grouch or a pill…I don’t think he wants to ruin the moment…it’s just he can’t get his point across or get his needs met because he can’t communicate like he wants or needs.

My dream…hope and prayer would be that one day William will have the ability to have a true conversation with me and I’ll ask him, “Remember when you used to do that…why did you do that and what could I have done to help you in those situations?” Because that’s one of the questions that haunts me…I’m afraid I’ll never know the answer and that makes me really sad.

Anyone else have this experience?

3 responses to “If he could only answer “why”??? Ugh, I don’t like autism

  1. “This happens often in our daily routine”

    It’s sad. I have the same experience. My son, 35 years old, say he hear voices since his childhood and it made him really upset.
    Even in the middle of the night they awake him, often with a shriek. Whenever that happens it takes a long time for him to calm down.
    Autistic people rarely hear voices, and I do not know if he is telling the true when he says that since childhood he hears them – there are many complications in his case – but it might be worth staying tuned.

    It is a tremendous challenge to live among such contradictory feelings in the same day or within hours. Some days I feel exhausted, I cried last night in a dream telling my daughter I could not stand anymore. But the forces until now always been renewed.
    I hope ( like all parents ) the best news to come from medical research, specially for the children.
    Thanks for sharing your feelings and thoughts.

    Sorry for my google translator English, I’m from Brazil.

  2. thank you for sharing your story and your struggles. We hope and pray that you will find the renewed strength to keep going for your son, daughter and family. Have you picked up a copy of our book? While you are past many of the stages we discuss in, “Look At My Eyes” you might be encouraged and empowered by some of our words. Please feel free to contact us if there’s anything we can do to help you.

  3. I will read your book as soon as possible.
    Thank you!

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