So I sat down to read a Blog I Love to read and I had to share her post........ A lot of it I have to agree with, if not all of it.
this summer, a well-meaning acquaintance I was chatting with at a
birthday party asked me an honest question — “What’s it’s like to be a
mom of an autistic child?” She wasn’t being nosy. I happen to like her
and know that she was genuinely interested in my experience. But what I
saw in her eyes was pity. She even teared up while we were talking.
Those of us with special needs children know that look. I called it
The Look of Tragedy. Again, she meant no harm. So, I got to thinking.
What is it like to have an autistic child? After all, they come in all
sorts of shapes and varieties. I’m just starting out on this journey,
yet many have seen their children through to adulthood. Some of our
children will be self-sufficient. And some will live with us or in a
group facility for the rest of their lives. So, I admit that I cannot
answer that question for everyone. But I can answer for me. And, in
that answer, I will likely be speaking for other parents of other very
So, here it is. Here’s what it’s like:
1. To begin with, it’s [a kind of]* death.
No matter how much you plan to allow your children their freedom to
achieve their own dreams, quite naturally you have a few dreams for them
as well. You dream of birthdays and holidays. Santa and presents.
Playing dress-up, doing arts and crafts, playing Candyland, dance
classes, Boy Scouts, sleepovers, team sports, high school graduation,
getting married, and having children of their own to love. And, though
many of our autistic kids will grow up and have and do just those
things, more than half of them won’t. At least not without a great deal
of assistance and likely not in any resemblance of the typical joy of
those things. So, you mourn. You mourn for what might not be. You
mourn for what you and they are missing now. And, later, you may mourn
for what will never be.
*Later I decided to clarify this
statement. As it was, it may have implied to some that it was equal to
the literal death of a child — which it is not. I meant it more as
another kind of death, similar to divorce, estrangement, foreclosure,
prison, and other profoundly life-altering experiences for which one
goes through the stages of grief.
2. Despite the death of the dream child you envisioned, you are
deeply in love with the child you have. He still does adorable things
you want to share with others. He loves you too, but the rest of world
won’t always get to see it. Because when he is away from home, he is
not himself. He is not the happy, affectionate child who holds your
hand, snuggling, and gazes at you adoringly while pulling your hand to
scratch and rub his back. They won’t get to see him at his most
charming and you will know they are so very glad they aren’t in your
shoes. You will see pity in people’s faces. And they won’t ever
understand the very real, profound joy this child gives into your life
every day. Part of being a parent is pride in your children. People
won’t see what you are so proud of. And that can be a lonely feeling.
3. Guilt assails you from all directions. You want to throw a
beautiful birthday party for your child. But he may not notice. He may
not be the least bit interested in the presents, and you will dread any
look of disappointment on the giver’s faces. He may be struggling to
get down out of your arms during the party, and there is an air of
sadness just beneath friends’ and family’s smiles. So you consider not
having a party. You consider not taking him to others’ parties. You
want more than anything to give your child the experiences typical
children have and feel guilty when you don’t. But sometimes it is
simply too overwhelming for you both to undertake it. Therapists want
you to spend hours doing activities to help him, but you also have a
job, perhaps other children who need you too, and you need some downtime
on occasion or you’ll go insane. So it seems you can’t ever do enough
for him. The guilt is a killer.
4. You live in a constant state of uncertainty of the future. Yes,
of course none of us knows our future. But, if you have a typical
child, you can be reasonably confident he will have friends,
self-sufficiency, and love. You know who to leave things to when you
die. But if you have a child with autism, you won’t know how to plan
your estate. Do you set up a special needs trust? Do you leave it all
now to the one typical child who can use it? Because lifetime care for
your autistic child will just drain it. And what if he grows to do well
and is able to care for himself? Because you can’t yet guess what will
be, every option is insufficient. Uncertainty can affect every part of
your life. Should I settle here in this city or plan to relocate to a
city with more intensive care for his needs? Will he ever talk? Will
he ever be toilet trained? You just won’t know until it happens or it
doesn’t. And you live with the fear that one day your then-elderly,
vulnerable child will lie sick or dying without the comfort of someone
who truly loves him. Anxiety runneth over.
5. Spontaneity is a thing of the past. You can’t just get up and go.
You have to determine whether there is an escape route from any new
activity or location. You have to pack things to distract him if he
becomes upset. You have to determine if foods he will eat will be
present or if you will need to pack his meal. If he isn’t potty
trained, you will worry about where you can take him to change him that
will afford you both some dignity. Everything - everything - must be planned and considered.
6. You begin to grow thicker skin. Because people will and do
stare. They will stare in disgust, thinking he is simply badly behaved.
They will stare in curiosity, because that is the nature of man. They
will stare in horror or pity, because “there but for the grace of God
go I”. People stare. And the thing that will come back to haunt you
are memories of when you, also, made a judgment about another person in
public. Righteous indignation mixes with humility and all you want to
do is get out of wherever you are as soon as possible. But you can’t
escape everyday life.
7. You grow weary of everyone else’s opinion. Because there are so
many of them. There are those who are certain they know how “this”
happened. There are those who are certain they know how to “fix” him.
There are those who don’t think you do enough. There are those who
believe you to be a saint. There are those who believe your child’s
very visible difficulties allow them to have an opinion over your
finances, his education, your marriage, and even your decision to bear
another child or not. Opinions abound, but your patience may not.
But mostly it’s like love. A love that you, if you are a parent, can
probably imagine. And a love that, if you don’t have a child born with a
bulls-eye in a big, bad world, you can’t. Unconditional doesn’t begin
to cover it. Limitless. Earth-moving. Making you question everything
you know to be true about God and man. And that kind of love will haunt
you every moment of every day. You can see it just behind the eyes of
every special needs parent on the planet. We are filled with a love we
never could have predicted. We are filled with fears we never could
have imagined. We are, quite simply, at capacity most every day. And,
yet, when inevitably called for, we find that capacity expands. We
aren’t better parents than you. We aren’t saints. And our children
aren’t lucky to have us. We are lucky to have them. Because,
despite all of these very challenging aspects to having an autistic
child, none of us will walk away from this life without having grown –
merely from having loved them. Having become more than we thought we
No, this – like many challenges one never asks for – isn’t easy.
But, I assure you, these children are worth it. :)