reader submissions. It is an attempt to allow people to tell their
personal stories, in the hopes of bringing greater compassion to the
unique issues each of us face. If you would like to submit a story to
this series, click here. Today’s guest posts is by Kerry.
I
want you to know that sometimes I wish my other child had Asperger’s
too. I like it that my son loves rules and wants to do the right thing.
Even as a newborn, he had the same personality he has now. It is not
easy to be a toddler that does not like change or transitions. The world
is new.
I expected my son to enjoy preschool, play dates and
birthday parties. I had friends that were pregnant when I was and we had
play dates together. I thought that our children would be best friends.
I
learned the hard way that groups, surprises and new experiences mean meltdowns. Outings with friends were a disaster. He would cling to me,
he would fall apart, and we would leave early. I watched other children
playing together while my son would not get off my lap. I gave up on
play dates. I did not have mom friends I could relate to. My son could
tell you the fifty states and their capitals when he was 3 but he hated
birthday parties. For a time it was lonely for me. I think every parent
comes to that place where you have to let go of your expectation of what
you child is going to be like. In my case, autism led me there.
We
spent a lot of time at museums and parks. I learned what made my son
feel comfortable. I sat up at night and googled autism. I did not know
if he had “it” or not. I did not know anything. It took a long time for
me to understand that rigidity was not something that he could help. I
lost my temper about things were because of his Asperger’s. I feel
guilty about that; again, I’m not sure if it was avoidable.
I’ve
learned to be patient with my son. I experience joy when I can relate
something to him that he understands and see progress. This year when he
was six, we had a play date where he left my side and played with his
friend.
My son floated on a cloud of happiness about his new friend.
I
want you to know that my child can make friends. My child makes
connections with gregarious kids, the ones that love to play and let it
go that my son is awkward. I love these kids because he blossoms when he
is with them. I get to see a side of my son that is otherwise not
possible. If you have a friendly little boy or girl that disregards the
fact that sometimes my son won’t answer or look you in the eye, but
finds a way to play with him anyhow you would know that a child with
Asperger’s has feelings. He has as many feelings as you do, it is just
that his feelings are in a maze and they have to wind their way through
his anxieties and his need for order to get out. Sometimes he is so
concerned about order and rules that he can’t make space for being a
child.
He loves animals and is concerned about social justice.
He laughs at funny things and plays and talks naturally with his
brother. When he sees a baby, he will say “oh sweet baby.” When I ask
him what he wants to be when he grows up, he says a Daddy. He loves to
cuddle and hold hands. He is good about explaining how he feels if you
take the time to listen. I want you to know that since our one good
playdate, my son is learning that other kids have friends and lives and
things they are caught up with and now he is challenged to figure out
how to insert himself in that stream. It’s not easy for him to
understand subtleties like “come over anytime” does not mean we can come
back and every day. We talk about social niceties and taking turns and
offering space and it’s work for him. It’s alien for him. I say, well,
this is work for you but other kids are working like this at math and
that’s easy for you. Do you wish you had a different brain? He loves
math and numbers and turning inward to count. I don’t think he wants to
change how he is either but like anyone he can feel frustrated and lost
at times. It’s just the things that frustrate him are so natural for
most people — like a field trip. The things that feel natural to him
are things other children don’t concern themselves with like pollination
or lunar cycles.
When I can find a way to people his world with
trusted friends, familiar places and champions, you would see that my
son is like every other child. Yes it is more work to communicate with
him, but I know I am a better person because of him. Because my son
demands respect and courtesy, I’ve learned to be very deliberate in the
way I speak to other children. Because my son does not like surprises,
I’ve learned to enjoy the ordinary.
I don’t like it when people
say that someone with Asperger’s doesn’t have feelings. I understand why
you think that, but the reverse is true. He is not a robot. He feels
things so intensely that he is overwhelmed. He can understand how you
feel too, if you explain it in a concrete way. He’s been raised with as
much respect and care as your child. But we fight a different battle
than you do. His homework is social exchange and his playtime is math
worksheets.
I want you to know that as long as I resist the urge
to say “that won’t work” my son is trusting with authority and makes
progress with caring adults beyond what I thought was possible. Public
school has been good for my son. I am proud that even though he is not
coordinated, my son uses his ability to focus to make him a pleasure to
coach. I watch him doing drills in the backyard and I think, look at
you, loving sports. Maybe it is because he has been lucky with coaches
that are very clear and fair when they speak. I learned that when he
understands and feels confident, he moves mountains. I am learning not
to stereotype.
Autism uses the symbol of the rainbow jigsaw in
its awareness campaign. Before I knew my son was autistic, I knew he
loved rainbows because they followed an order. I learned how important
order and rules are to my son to help prevent surprises. I see the world
in a new way because of my son. We talk about ocean currents, recycling
and crop irrigation. We talk about God. I think he is going to change
the world, because if anyone is going to decode the language of
dolphins or see a glimpse into the mystery of the weather it is my son
with his love of patterns.
Sometimes I think that Asperger’s
should not be called a “disorder” because it is the insistence on order
that makes my son who he is. I want you to know that Asperger’s is cool
and sometimes, I think my son is on to something with the way he is
oriented. If my son is in your class, I want you to enjoy his unique
gifts and reach out to him. You will find a loyal friend with a pure
heart.
Your story moved me to tears…it was my story,too 🙂