Community means a lot of different things to many different people, but for me it means the support, and love that my family needed at a time when life as we knew it was beginning to unravel.
When my second son, Corbin, was born my oldest son, Landon, was
not even two years old yet. I jumped into the role of
motherhood with zest, love, exhaustion and unconditional adoration for these
perfect little people I was blessed with.
My husband Matthew, a production worker at General Electric,
and myself a freelance writer, embraced our new lives as parents, in our little
home in Rotterdam New York, with the same excitement and unease that’s typical
of new parents. Of course we aimed for perfection, and learned quickly it was a
myth generated by writers of parenting self-help books, but it didn’t stop us
from putting our best foot forward.
When Corbin was only two years old, we began to see certain
skill sets he had once attained going by the way side, and within only a few
short months our sweet boy had retreated into a world we knew nothing about. Soon after he received an autism diagnosis from Capital Care Developmental Pediatrics.
It’s been three years since the beginning of my son’s initial regression, and
in that time my entire world came unglued into a million pieces. As our lives slowly came back together, one puzzle piece at a time, I began to see a
picture different than the one we left behind. Admitting that things were
different was a challenge, and for some time we were in limbo waiting for our
son to return. We patiently held out hope for the family we were, the life we
had dreamed of, and the return of the little boy I once knew.
It has taken me some time to realize that little boy was
never lost, just hiding behind a mask of challenges, and because of the
incredible community and support that reached past our confusion and in to our
hearts, we have been able to feel whole again. My son is the happiest little boy I know, and while I wish he didn’t have to face the challenges brought on by his
autism diagnosis, I’m so head over heels in love with this little boy who
I have come to know deeper than I ever dreamed possible. He has taught me that
love needs no words, that stars can’t shine without darkness, and that we are
spiritual beings transcending our physical abilities daily.
I don’t want to pretend it’s all roses, but like so many things
in life, it is in the challenges that the greatest beauty is found. I have had
the privilege of volunteering for a wonderful organization, Parent to Parent of
New York State, where I have not only been matched with parent mentors who have
stood in my shoes, but have had the unique opportunity to mentor other parents
during challenging times from advocating for their child’s services, to
handling hurtful and opinionated friends/family members. What I’ve learned through all of this
is that there is nothing greater than love. It goes beyond our fears, surpasses
our current circumstances, and places us on sturdy ground. I’ve found nothing
more fulfilling than having the opportunity to provide resources and
encouragement to others when their minds get stuck on the challenges.
I hope you will consider Albany on the Spectrum a companion
blog as I share about the joys and challenges of raising a special needs child
in the capital district, as well as raising a typical child, and doing my best
to find the balance, knowing that I will often fail, but will never stop
I aim to share uplifting stories about my own experiences,
as well as the frustrating ones, and provide as many resources to you as
possible. I will share the local business hot spots where you will find the
accommodations necessary to attempt that first trip to the movie theater,
playgroup, dining out, or even playgrounds where you can actually sit back on a
bench and relax without having to worry about a flight risk.
We live in a beautiful area with some of the greatest
supports for special needs families, and while there are unique challenges that
range from hilarious to devastating, we have community here. We have supports,
programs, accommodations, practitioners who want to see us thrive, and
businesses that aim to meet our needs.
We are welcomed, and loved here in the capital region, and I wouldn’t
want to live anywhere else.
I’m not suggesting it’s always easy, that there aren’t
challenges ahead, or that anyone should ever ignore their feelings. One rule I
have is that I’m allowed to feel however I feel. If I want to cry, I cry. If I
want to rejoice, dammit, I’ll fist pump at the grocery store and no one can
stop me. Parenting can be emotional work, especially with a special needs
child. We worry about their future, we worry about their services, what they
can’t say, can’t do, what others might think, whether we’ll ever just be able
to relax. Will they talk? express themselves? fall in love? go to college? get
married? have children? Will they open their Christmas presents this year? Are
they getting the supports they need in school? Is that therapist a match? Is he
crying because his stomach hurts? or he was stung by a bee? or someone hurt his
feelings? And some wonder “who will care for him when I’m gone?” Ya, we have concerns, we worry about things we never dreamed would
enter our minds. We also celebrate little milestones that so many will never
understand. He looked up when I said his name. He cried when we passed Dunkin Donuts
because he recognized it and wanted to stop. He said “bubbles”. He got mad when
someone took his toy. He pulled off his diaper before he peed (on the floor) because he knows when he has to go. Our milestones
aren’t on Babycenter, and sometimes a Facebook post can’t represent the
incredible gravity of a breakthrough.
Despite all of that, we are not alone. There are thousands
of families in the Capital District who share in our worries, who understand
our challenges, and best of all want to celebrate our joys and successes with us.
So if you’re a family raising a child with autism, or other
special needs, I hope you will find this blog beneficial. If you are not a
special needs family, I still encourage you to follow because autism awareness
is about so much more than understanding a diagnosis, or tolerating a behavior.
It’s about creating a community our kids can thrive in. I don’t want you to
tolerate my son, I want you to welcome him.
you live in the Albany area, and are on the autism spectrum or the
parent/teacher/loved one of someone with autism and would like to share about
your experience please email your blog to firstname.lastname@example.org to be considered as a guest
blogger. If you would like to share or ask about resources for children with
autism in the Capital District please email me at email@example.com