Parenting by Strengths

Autism in the Family: The "Meltdown"

By Lynne Berrett

    One of the most difficult experiences parents and grandparents can have with an autistic child is when the child "melts down." Of course, every young child melts down now and then. But sometimes age is not a factor. Rather, it's sensory overload, or encounter with unfamiliar places, or difficulty transitioning, or something completely unknown that triggers the dreaded event.

   Figuring out how best to deal with the intensity and unpredictability of the meltdown challenges the most resourceful parent, let alone grandparent. This can be one reason grandparents start to avoid offering to take care of the child as the child gets older. It's not so much a lack of interest or acceptance of the child as the feeling of being at a loss about what to do when the child can't seem to be calmed.

    Here's an example of one of those moments:

April is Autism Awareness Month

By Lynne Berrett

I have the same mixed feelings about Autism Awareness Month as I have about Mothers Day.  They are both nice ideas on the surface, but they do have their down-sides. Not everyone who would like to be, can be a mother. Not every mother is wined and dined, or even gets a Hallmark card. In fact, there is a large group of women who are sad and embarrassed every Mothers Day, because it only serves to underline their deviation from an idealized picture. Similarly, a writer who is autistic recently noted that she doesn't need a special month to become aware that she's autistic or to have this reinforced by others.  She added caustically that some of the major organizations devoted to autism, such as The Autism Society of America and Autism Speaks, don't employ, or ask for input from, autistic individuals themselves.  So who is this month actually for, she wonders.

I would guess it's for the fundraisers, the people running these organizations, who want more money for research into the causes of and to some extent new treatments for autism. As a grandparent who wants to stay current with available knowledge, I continue to pay dues to both these organizations, even though I (like the autistic writer) have doubts about the value of proclaiming special months.

My goal--and I believe this is one of our greatest responsibilities as grandparents of autistic kids--is to learn as much as I can about what is known. The problem is that so little is really clear. There are so many different points of view about causes and treatments.  Is ABA the only evidence-based program, and the only program that works?  What about Floor Time, so persuasively described by Dr. Stanley Greenspan?   Are any new ideas coming down the pipeline? 

So I visit the official organizations every so often to check out what's going on. However, the most  enjoyable way I've found to pursue this information is more personal. I have been discovering various online sites written by highly self-educated parents of autistic kids and sometimes by autistic individuals themselves.  While the official organizations provide links to current research and new approaches and give some sense of the big picture, their impersonal nature makes them less compelling than the voices of parents and autistic adults, the people in the trenches.

Here are some of the sites that offer quite a bit of helpful information and are interesting to read as well:

The Autism Bulletin

Autismvox

Sustenance Scout

The Joy of Autism

The Autism Acceptance Project

Take a look at some of these; listen to the individual voices in them  Tell me about writers you discover as you explore this world that you and your children and grandchildren are now part of.

Autism in the Family: Taking Care of Each Other

By Lynne Berrett

I am bringing you a very special message entrusted to me by a number of mothers of children on the autism spectrum. They recently responded to my question: what do you want most from your families?

I am the grandparent of an autistic or special-needs child (I think the issues must be very similar with any special need), so I know first-hand how much everybody in a family is affected by the extra concern and care involved, even before a definitive diagnosis is made.

While I am writing this primarily as a grandparent to other grandparents, I hope those of you who are the mothers and fathers of special-needs kids might also find something here which you can take back to your extended family to open up a constructive dialog.

I feel very grateful that these generous young moms took the time to share their thoughts with me. Some of the things they say they want most from their families may surprise you.

Families and Autism: Holidays at the Grandparents' House

By Lynne Berrett

  As the grandparents of a little boy on the autistic spectrum, we have joined several organizations to help us become better parents and grandparents.  Although we're both researchers and consider ourselves knowledgeable people, there has just been too much to learn on our own, so we are grateful to benefit from the work of so many others.

    When Autism becomes part of your larger family life, things turn upside down. I'm sure it's true for any of you who have grandchildren with special needs.  First, everyone has to deal with the stages of acceptance of the reality that these grandchildren need many kinds of services, the more the better when they are very young.