January 19, 2016

Keep Hope Alive

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 11:26 am by autismmommytherapist

Summer 15 096

A couple of weeks ago I wrote a piece about autism’s gifts for the Autism Speaks blog. As usual they posted the piece on their Facebook page as well, and comments followed. Most of them were positive. Many of the commenters share their own experiences, citing the gifts they thought autism had brought to their families as well.

And there was one comment that just got to me.

“I would like to have an intelligent conversation where we can drop the mask of constantly being happy about this and talk about the things this has ruined for us as well. Mind you, I love my son and would never change him even given the chance. I just want to know that not all parents with Spectrum children are walking robots forced to grin and bare it. I wanna talk about us having mental breakdowns because of the isolation, I wanna talk about the anger and hatred we feel because it genuinely sucks. Anybody can be the eternal optimist, and that’s fantastic. Where are the real parents that have issues like me?

Or am I just a shitty person because I fully understand that this isn’t all smiles, puzzle pieces, and blue light bulbs?”

I get it. I so, so, get it.

I often start my blog posts with a description of the early days with my son Justin, who is severely autistic. I write about the harsh realities of having a young child on the more involved end of the spectrum. I share with my readers about the insomnia that dogged his days. I talk honestly about his aggression when he couldn’t make himself understood. I speak about how difficult life was for him before he could communicate with his PECS book, and later with his iPad.

I write about how he suffered.

I’ve walked the walk that many of you are going through now, watching your sons and daughters struggle. I’ve struggled too (as has my husband), emotionally, physically and financially with the ramifications autism has brought to this family. There were days we were living hour to hour, wishing desperately for a magic pill that would make him happy.

And after years and years of struggle and challenges and pain, we’ve come through to the other side.

And that’s why I mostly write about having hope.

I will never tell another parent of an autistic child that things will get better. Nobody can promise you that, plus everyone’s definition of “better” is different.

But I will say this.

Carry hope with you that your child will improve. Nurture that hope, breathe life into it, make it grow. I say this because a mom of an autistic child once told me a decade ago that each day I should find at least one bright moment and cling to it, hold it close, take it out and remember it at night no matter how challenging the day was. That advice helped me get through a year-and-a-half of doing ABA therapy with my son six hours a day, five days a week. That wisdom helped push me to be a better teacher, practitioner, and parent. That moment of remembrance would comfort me when comfort was not enough to diminish my son’s meltdowns.

That moment of hope would help get me through.

If someone had told me ten years ago that my severely autistic son would eventually eat more than one thing, sleep through the night, communicate with a technological device, be potty-trained, use a few words on occasion, and most importantly, be a predominantly happy child, I would not have believed it.

But today, after years of therapy, consistency, his own maturity, and love, he is all of those things and more.

He loves his life. And we love him.

And sometimes a little hope can go a long, long, way.
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  1. Joyce F said,

    So true! While we can all relate I think keeping hooe and hapoy thoughts at bay help us to overcome the not so happy moments and in a sense , an escape from reality. I love that tip about one positive thought …clinging to it and growing it. Definitely encouraging things to consider.

  2. Carolyn Bell said,

    There is a place for the intelligent conversation about what autism has ruined for us, and I usually have conversations with the people who can help resolve those issues (counselors, educators, etc). Especially at the beginning “in the trenches” you have to do that just to survive, but there is “the other side” of all that struggle. Anyone who is just learning about a diagnoses or maybe even not to that point yet (maybe just has serious concerns) needs the support and the positives that will eventually appear when they get through the valley they are entering. I will date myself when I say this but “you take the good, you take the bad, you take them all and there you have the facts of life”. You can’t just take one or the other… both are important and necessary. For a public platform and raising awareness, you have to have both. To a parent of a child on the spectrum, you have to deal with both and embrace both. I LOVED the article because it is us!!! We love the gifts of autism, and I actually tell a lot of people that “it has its perks”. But I follow that up with “it has its challenges too”. If we focus on nothing but the struggles, we never allow ourselves to enjoy the success. I think that is why you hear so much positive – because every positive has been through the negative and wants to celebrate the fact that the parent and child both survivied!! Autism teaches you to celebrate even the smallest victories and build on the strengths that you find.

    • A very thoughtful comment, thank you for your time. We try to celebrate even the smallest things here, it helps when times get tough!

  3. Bobbie Gallagher said,

    Well said my friend

  4. Chad said,

    Bravo, Berlee–another heartfelt, tear jerker post.

  5. I also need to have hope for a world that grows more accepting and adaptive…

  6. Alan Malizia said,

    Wonderful post. Wise words from one who walks in the shoes of the challenged. There are times when a tipping point is reached and the last thing one may want to hear is to hang on. But, as one who has dealt with disability since the age of four, I know that one must keep moving forward and handle the daily hiccups as they come. But, don’t allow them to stop you. I see it that way because that is what was instilled in me by my parents. Parents that carried the burden similar to you and your husband. Prayers are offered to you and more-so to those who have reached the tipping point. Prayer come not from optimism but from realism. In time their healing and strengthening power will be felt.
    God bless,

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