Mount Everest

Day One for the Autism Awareness Blogathon

(A note: to all those people who are here after searching on the topic of Mount Everest, and there are a LOT of you – sorry! This is about my personal Mount Everest, not the actual mountain)

I’m not starting at the beginning. I’m starting in the future. Because as much as you worry about things like aggressive behaviour, stimming, echolalia, noisemaking, sleep and eating issues, obsessions, spitting and all the other really fun challenges a child with autism will present to their families, the biggest challenge by far is the future. It’s the great unknown.

image credit: asiapacific.blogs.ie.edu

As parents, we want everything that any parent wants for their child –love, happiness, fulfilment, friends, reaching their potential etc. But we want more, much more. Although the process of diagnosis and early intervention is confronting and arduous, I have a sneaking suspicion it might be the easy part.

Little kids are cute, they scream, they act out, they don’t play nice, they get messy and they find it hard to manage their feelings. An autistic child is all those things plus delayed and exaggerated. We are bigger and stronger so we are able to handle all that (mostly).

By the time they are teenagers the tables have turned. They can be bigger and stronger than us. By then you better hope you’ve got their toileting and self care skills happening. You’re hoping their language and/or communication skills are functional at the very least. Managing their emotions and impulsive behaviour? – yes please! Massive supermarket meltdowns? – a thing of the past that you can have a good laugh about. Please.

What is the future you see once your beautiful child has left the (hopefully) safe haven of the education system? Is it a disability pension and parental care at home? Is it a job and living independently? There’s a massive world between those scenarios and they aren’t even the extremes.

I might have days where it’s all I can do to get through it, nights where I’m waking with tears cos I’m not living up to some crazy version of an ideal parent that I have stuck in my head. But I want to split my focus between now and the future. I can’t take my eye off today, but I want to put effort into creating the best possible future for my little boy. If I don’t start now, it will be here before I know it and I won’t be ready.

image credit: personal-development-is-fun.com

I have a feeling that this is Mount Everest and I’m not even at base camp. I haven’t even got all my supplies together. I don’t think I’m going to be able to rely on government and good will to make the future one to look forward to. Like most things, if you really want it, you’re going to have to work for it. So that’s what I’m going to do.

Tomorrow: Light it Up Blue with Laser Beak Man

Light It Up Blue with Laser Beak Man

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14 thoughts on “Mount Everest

  1. I know! Everyone says it happens so fast. One minute they are babies, the next they are an appetite with hollow legs who grunts at you. I told they still love you though – so somehow, we will survive it!

  2. MAN OH MAN, what a start to your blogathon!!! As a parent of a 19 year-old with autism, you made me draw a deep breath and hold it as I read your words. WOW! You hit the nail right on the head over and over again—whew —I can exhale now! Great job!

    Try as you might, you’re never prepared for what comes next. My wife and I were talking earlier today about the fact that Sam is nearly through with his first year of the 18-21 program. Then we’re on the to the rest of his life . . . but what will that be? So many questions left to answer.

    I’m very proud to know you, Rose! Keep up the great work you’re doing—at home as a mom and on this blog! —George

  3. Pingback: Please visit my friend Rose! | COALESCENCE

  4. Reblogged this on crazyantelope and commented:
    I’ve recently joined wordpress and have been very impressed with this blog. “Love many trust few” is posting a daily blog on Autism throughout the month of April for Autism Awareness Month. Check her out.

  5. Hi Rose, I am looking forward to reading your daily blogs and learning more about Autism and life in general.

    You are a glass half full person, actually more the half full, you have an amazing ability to find the right resources at the right time. in the buysness of it all you are able to string many great sentences together, reflect on the past, present and future, and be creative.

    you are an inspiration. May the road to Mt Everest, be filled with lots of base camps (cups of tea), good supports from your family and friends, and a big box of tissues when you grieve the losses for your darling boy.

  6. I came over hear because I saw you were following me (thank you, by the way!). Great post and very true. Our little guy is 5 and I worry so much about his future, especially since his dad and I are older parents. I look forward to reading more.

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