Author Archives: barbaradomingue

Standing on the Shoulders of Those Who Came Before Us

This blog was written by Barbara Domingue, M.Ed., ATP — Executive Director of Community Autism Resources

With my son turning 34 years old this November, I’m at an age where I think back on the many moments that took us to this point in our lives. From the very beginning, there have been people in our lives, those who experienced autism long before my experience, who generously shared their experiences, their wisdom, their journey.

2 of my first phone calls would not be considered warm and fuzzy conversations. They were with women who knew that I was struggling, not only to understand my son, but also with trying to make sure that, at his young age, he was getting the best possible services. The first woman I spoke to was Barbara Cutler, Ed.D. She wrote the book “Unraveling the Special Education Maze.” I called her in a panic and she calmly asked me if I had read her book. I confessed that I had not. She suggested I read it, make notes and call her with my questions. While I was surprised by this, I later realized that she was helping me to get focused and teaching me the beginning steps of effective advocacy. She has been a life-long mentor to me. No nonsense, clear thinking, and a passionate advocate. She taught me how to advocate effectively for my son. Barbara has never been judgmental or critical of my efforts. She has always been a source of strength and comfort. Standing on her shoulders, I knew that helping each other was a necessary path in our journey. She invited me to join the Northeast Regional Conference on Autism and later, to be part of the Autism National Committee (AUTCOM). This group is dedicated to “Social Justice for All Citizens with Autism” through a shared vision and a commitment to positive approaches. I met wonderful people in this group. These early advocacy endeavors helped me to feel connected to others and provided me with wonderful information to assist my son. It also taught me how powerful we can be when we work together!

I also spoke with Norma Grassey. Norma was living in Cohasset and was the I&R person for the MA Chapter of the Autism Society.  This was long before there were autism support centers. Norma began by asking me how old my son was, I tearfully told her he was not quite 3. She told me that her son was 8 years old & that I would make it. What she actually said was, “You’ll live.” She went on to explain that this was the first stage – getting to understand him and how autism affects him; getting to know the system and what I needed to do to prepare myself.

I joined the MA Chapter of the Autism Society and had the privilege of working with Norma through that group. Standing on her shoulders enabled me to see how I could assist other parents on their journey.

The last person I wanted to mention, whose shoulders I’ve been fortunate to stand upon, is Dr. Barry Prizant. My husband Bob & I were really at loss in knowing what our next steps should be when Nick was diagnosed. I felt we were being pulled in many directions. But in our gut, we knew that we wanted him to be treated with respect and kindness. We wanted to work with individuals who acknowledged the many facets of autism seen in Nick. We knew he was so much more than the behavior we were seeing and wanted people know this as well. A dear friend introduced me to the work of Dr. Barry Prizant. Immediately my husband & I knew that he was a kindred spirit. I confess we took to stalking him – in the nicest of ways. We would find out where he was presenting and make sure we were there. Through these workshops, we began to understand Nick in a deeper way. We started to figure out the “why” when he reacted to things. Nick was enrolled in a program where Barry was the Director of the Communication Program. All these many years later, long after Nick left that program and moved on, Barry continues to teach us the importance of sharing what we know; looking at and treasuring our son for the “uniquely human” being that he is.

Nick is now an adult and I continue to learn from those who came before me and hope that, in some small way, I can repay the kindness of those who helped us and continue to help us along the way.

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A Meaningful Life…

Ever read something that just stays with you?

A few weeks ago, I read this introduction to a book. The section was called “Toward a Meaningful Day (or, Even a Guy Without a Lot of Options Knows When You’re Wasting His Time)” – and that was just the title!

It went on to say, “Minimal intellectual stimulation, crushing boredom and, ultimately loneliness characterize lives that could otherwise be meaningful and productive.”

I have a 32 year old son on the autism spectrum. Like many parents, my husband and I constantly worked to make sure his educational opportunities were the best we could make them. No easy task as many of you know. The thinking is – give them as many tools as we can – teach them as much as possible – because we want them to have meaningful lives, meaningful futures!

Then our children leave school and enter the adult world, and we wonder – will they be lonely? Will there be different types of opportunities for them? Will their days be characterized by endless boredom? Even the best of plans, transition or otherwise, fall flat when real opportunities do not exist.

And for those of us who are parents, we find ourselves sometimes back at square one, back where we were when our children were little and we were navigating services for them. The difference now is that we’re 20 years older and our energy levels are slipping and we can’t quite believe that after all the years of work, here we are again, still trying to make sure the right things are in place for our now adult sons and daughters.

Sometimes you don’t want to “fight the good fight” because you’re simply too tired. But if not us, then who?

The book I was reading, the one that started me to think about these things again, is all about Creating a Meaningful Day. It’s a curriculum filled with rich ideas that talks about our need to partner with creative people to try to establish new opportunities; design new possibilities and suddenly, I’m energized and hopeful again.

Just because we can… doesn’t mean we should.

I’m always nervous when I receive an email that says, “Did you see this?” usually followed by many exclamation points or question marks or both.

It usually means that I’m about to read something upsetting – and in this case it did!

The article began with the words “Horrifying new cure” followed by the line

“some parents are trying to reverse autism by giving their children toxic miracle bleach enemas!” The article then detailed the use of a product which contains chlorine dioxide – a mix of sodium chlorite and citric acid. I did a little research, because I’m always skeptical about these things and found that in fact this does exist and is being used by some to reverse the effects of autism.

I’m very familiar with the use of enemas (not bleach, just regular saline).  Having a daughter who is paralyzed and requires enemas, I know them to be uncomfortable and painful at times.  We hate giving them to her and wish for other options, but this has worked for her and she’s never had bowel issues – thank God. We use this purely for bowel regulation!

So to think that a person would use bleach in an enema and give this to their child is hard for me to understand. I can only guess that these parents must feel desperate to want to help their child – but just because we can do something doesn’t mean we should. I should also say that the FDA has warned against this product and that there is no scientific evidence that this is an effective treatment for autism. It has caused vomiting and diarrhea and is an irritant to the skin and tissue! My son with ASD is 31 years old. I have seen my share of therapies – some very good, some that make me say, “seriously” (like this bleach one!)

I also know many parents who feel that unless they turn over every stone, try everything out there, they won’t feel they’ve done enough for the child.

But I can’t help but feel that at some point in time, we have to look critically at what’s being offered and ask ourselves if this will truly help; should we be doing this?

I know my husband Bob and I reached that point when we were offered therapy that we felt just wasn’t right for Nick – it went against how we felt he should be treated.

These are very personal decisions that each family faces. What angers me is that there are individuals, and companies that prey on the vulnerability of parents, knowing parents will do all that they can to help their children. They dangle these things in front of us – with a hint of hope that it may work and a hint of guilt should we say no.

Thoughts on Halloween…

Oddly enough, I find myself writing this blog right around Halloween!

I’m not really a fan of Halloween — though I do love seeing the Trick or Treaters.

I never was very good at picking costumes… no imagination!

Beth Halloween

Beth’s homemade costume

We have 3 children and my son with autism (now 30 years old ) is my middle child. My oldest daughter adored everything about Halloween. She loved creating her own costumes- the more elaborate, the better! My youngest son loved anything in vogue — McGyver ( the easiest costume we ever put together), to Ninja Turtles — he’s now 28 & yes, they’ve been around that long!

Nick, like his mom, was not a Halloween fan.

He hated anything on his face — so no masks, no face paint…

He didn’t like clothes that were restricted or anything that felt “weird” so costume design had its challenges.

As parents, we’re faced with challenges big & small every day. Balance has always been the key to relieving home stress for us. Around Halloween, the challenge was to make this a time that all our children could enjoy.

Halloween (1)

Beth, “McGyver” Nate, Mummy Nick & Grandma & Grandpa

So we tried to create costumes for Nick that meshed with his daily clothes — one year he was a mummy so he wore comfy sweat pants, a white sweat shirt, a white winter hat & we stuck gauge all over the whole thing! It wasn’t fancy, but it allowed him to participate and feel comfortable.

Trick or treating was limited to grandparents and a few homes in the neighborhood & if Nick wasn’t up to that, then he hung out with his grandparents while we took his brother & sister to a few houses.

Holidays & special days can certainly be bittersweet for parents, especially as they can often times be very stressful for our children on the autism spectrum. But I like to think these occasions bring out our creative side and although we may not celebrate them in traditional ways — we find interesting ways to make it all work.