Note: This is so beautiful, insightful, and helpful that I don't want it to be limited to my blog. So if it has touched or helped you in any way, can you please share? It might help someone out there ...
Puzzle
Pieces: Tips for the Extended Family of a Child with Autism
I am not Bia. Bia is my sister –
my awesome sister! – and she asked me to write a guest post for her blog. Why?
Because April is Autism Awareness Month, and the youngest of my three
sons has autism. When she called to talk
to me about the guest post, she seemed to be struggling to express her
idea. “Can you write something about how
we can help?” she asked. “When the
families are together, I want to help you with Peter, but I never know if you want the help,” she continued. “When would you prefer to handle things
alone? What should we say, or – for that
matter – what should we not say? What
can we do to make things easier for you guys?”
I can understand her confusion and frustration. Autism is an extremely puzzling disease,
which is why the puzzle piece has become a widely known symbol for autism spectrum
disorders. Recent statistics indicate
that 1 in 50 school-age children are affected by autism. This fact is staggering and alarming. What makes things worse is that the disease
is different for every child, and every family struggles with different
issues. There is no manual that would be
helpful for all families who face autism.
However, I can speak for my own family, and maybe some things that work
for us might work for others. So here is
my attempt at offering tips to those who have a child with autism in the
extended family:
To Help or Not to Help
You watch as your sister and brother-in-law face a difficult situation
with the child. The exact issue does not
matter; you just want to know if you should step in and help. A simple rule of thumb would be this: help when you are asked to help. If I say, “Bia, can you help?” I know that
you will jump up immediately. But if I
don’t ask, it means we have the situation under control. This might not be the case for parents who
find it difficult to ask for help. It
took me long time to learn to ask for help without feeling as though I am
imposing on someone. But I have learned
that I can’t “do it all” if I want to remain in a healthy place physically and
emotionally. So I promise that I will ask
for help when I need it.
Should We Offer to Babysit?
You worry that your loved one might be insulted if you offer to
babysit, as if you thought they couldn’t handle their own child. There was a time when I thought I didn’t need
a break; that I could handle everything.
If I left my child with a sitter, even if it was a family member, I felt
guilty for taking a bit of time for myself.
I even felt that nobody could care for my child as well as I could, so I
had no right to give that responsibility to someone else. I have since learned that those attitudes
were detrimental to the well-being of our entire family. EVERYONE needs time away from care giving in
order to refresh and renew. This is
called “respite” and studies have shown that periods of respite are beneficial not
only to the family care givers but also to the child.
So the answer is:
Absolutely! Offer to
babysit! I may not take you up on the
offer immediately, but I’m pleased to have the option. There may be a reason why I refuse the offer
at the moment, but keep offering because it is greatly appreciated.
The Best Time to Talk
Sometimes I just don’t want to talk about it. That is the plain truth. Parents who have a child with autism are
constantly bombarded with information and advice, questions, statistics,
studies, doctor’s reports, therapies… it’s hard to find a moment when autism
and its effects are NOT on your mind. It
is exhausting. There are times – like on
a holiday, for example – when I just want to enjoy being together with my
extended family, to relax, and not have to be in my “autism advocate”
role. You might think that a family
get-together is a perfect time to catch up on the progress the child has made,
or to discuss controversial therapies, new studies, alarming statistics. But try to resist asking too many questions
around a dinner table. When that
happens, I personally feel like I am on trial and I immediately stop enjoying
my meal. There will be other
opportunities to catch up on the facts.
If I offer some information without being asked, that’s a clue that I am
ready to talk.
Carry on Like Normal
We recently celebrated Easter Sunday at Bia’s house. During the meal, there was a potty training
“incident” with our son, and it took me and my husband about 20 minutes to get
everything cleaned up and settled. When
we returned to the dinner table, everyone was carrying on with the meal and the
conversation as if nothing had happened.
I truly appreciated that. Nobody
made a big deal about the incident, and I was relieved. Sometimes we just wish everything were
“normal” and when family members take things in stride without making a big
deal about them, it makes things just a little bit easier.
What NOT to Say
I hear it all the time. “This is
Mary. She is autistic.” “Joey is autistic.” That word – autistic – bothers me. I am
not denying the diagnosis. My son has autism. But he is not “autistic.” Autism is a disease. The word “autistic” takes the disease and
turns it into an adjective. If someone
has cancer, do you say, “This is Lisa.
She is cancerous”? If someone
suffers from dementia, do you introduce him by saying, “This is Jim. He is demented”? Of course not. Saying that a child is “autistic” sounds as
if you are defining the child by that adjective; that you are describing him or
her with that one word – a word that carries with it some very inaccurate
stereotypes. How can anyone’s
personality be described with one word?
My child’s personality is made up of many different characteristics –
some good and some not-so-good. When
introducing him to someone, rather than saying, “This is Peter. He is autistic,” I say, “This is Peter. He is four years old. He’s a happy, very busy little guy.” In
the course of the conversation, I may eventually say, “Peter has autism,” but I
choose not to define him as primarily “autistic.” It’s a meaningful distinction.
Be Aware and Reserve Judgment
I can remember, in years past, seeing a child misbehave in a grocery
store and thinking, “What a brat! That
parent needs to do a better job disciplining that child.” In the process of learning more about autism
during the past four years, I have also learned to avoid being judgmental about
a child’s behavior. I am not as quick to
jump to conclusions when I see a child “acting out” in public. Remember – one in every 50 children you see
may have autism. You never know what
might be at issue with a child or a family; you never know what struggles they
might be facing. Some children are
extremely sensitive to light and sound or any kind of visual or auditory
stimulation. Imagine how torturous it
would be to go to a grocery store if you felt as though you were being
bombarded with images and sounds. You
would be frightened and overwhelmed and would just want to escape. The distress would be compounded if you could
not speak and could not express what you were feeling. So, please – the next time you see a child
“misbehaving” in public, say a quick prayer for that family and reserve your
judgment.
There are many more issues that could be discussed regarding autism;
there are a multitude of pieces to this puzzle.
But it is my hope that at least some of what I’ve written here will be
helpful to other families who are struggling with the same issues that we are. I have to say, though, that one of the best
gifts God has given us is a family that is supportive and caring, and always
there when we need them.
-
Laura Townsend Kane, parent of a child with
autism
