Carson turned 8 on Sunday.
The poor guy’s birthday falls days after Halloween, which typically leaves us exhausted for a week or so from all the prep work involved with the day in Berlin.
In the past, pushing through our post-Halloween malaise, we have scrambled to have a birthday party for him near or on his birthday only to conclude afterwards it wasn’t necessary. Carson, unlike his big brother, prefers to not be the center of attention. In fact, he’s uncomfortable with it altogether.
That’s why I don’t have as much guilt as Pam does over the fact we didn’t have a birthday party for him on his big day or actually have anything in the works. Instead, Carson spent most of his birthday playing with his new gifts – mostly new trains and train tracks — in our basement, which has been overhauled into a kids play area.
I like to think he spent his day doing just what he would want to do. He played with his favorite toys of the day in a relaxed atmosphere without a care in the world and many distractions. He occasionally asked us to play with him and we did, but he didn’t really want us to engage in his trains as much as he wanted us to watch him set up and dismantle his intricate train routes and patterns.
On birthdays, especially when kids are young, I think it’s natural for parents to get reflective. Facebook memories popping up showing their cherubic faces over the years help propel that inevitably. In Carson’s case, when I reminisce about his young life, I can’t help but feel a lot. Life has never been easy for Carson, but his robust determination, meticulous spirit and indomitable will are to credit for the tremendous progress he has made over the years. The fact he has our unwavering support I like to think helps a bit too.
As I mentioned over the years, Carson is special needs and requires extra services and accommodations in school and in life in general. He has a rare chromosome disorder that is complicated and involves more space than permitted here to detail with specifics. While there is nothing simple about his diagnosis, the bottom line is the issues linked to his disability place him on the Autism Spectrum.
For those who don’t live in the special needs world, it’s important to know the spectrum is vast. It can range from severe to mild and high functioning to low functioning. There’s an ocean of differences in between. I would categorize Carson as highly functioning because of his cognitive ability to understand just about everything. However, it’s fair to label him as on the spectrum for a variety of reasons, including learning challenges, social awkwardness and the fact he’s non-verbal.
Carson’s greatest gift to me is the inspiration he provides on a daily basis. He has taught me the true meaning of patience, the importance of understanding expectations and to never underestimate him in the face of a challenge. He has made me a student of disabilities. I’m addicted to reading anything I can find on special needs children, especially first-hand accounts from parents about their experiences, successes and failures.
Oddly enough, on his birthday as I laid on the floor giving him company while he built a monster train village, I came across the following “I See You” column online at The Mighty’s website from contributor Jessica Offer. The last paragraph means the most to me and it belongs framed on Carson’s wall in his room. Perhaps other parents living in the special needs world will enjoy it as much as I did.
To the parents out there who spend their weeks consciously trying to attend to their child’s needs (special or otherwise) and still feel like at the end of the week it’s not enough – I see you.
To the parents who throw their hands up in the air in utter desperation and frustration because you’re scraping the bottom of the barrel and nothing seems to be helping – I see you.
To the parents who attend meeting after meeting, appointment after appointment, trying to make more sense of their child’s depth of need – I see you.
To the parents who actively advocate and spread education and awareness in the vain hope their child may feel a little less segregated from the rest – I see you.
To the parents who feel isolated and alone but also daunted at the prospect of friendships – I see you.
To the parents who carry guilt because they can’t give their children equal attention – I see you.
To the parents afraid a label may place limitations on their child – I see you.
To the couples who are trying to scratch out chunks of time for themselves so they can identify as more than mother and father, but often feel like it’s a fruitless exercise – I see you.
I see you all. You are not alone. It is hard and you are doing such a wonderful job by your children. They may not recognize it now or even for a few years, but they will and they will be so thankful and proud. You never ever once gave up on them.
And finally:
To the child with autism who may feel lost in a world that is overwhelming and confusing – I see you, and believe me when I say you are loved and supported and your world will gradually make more sense one day because we live in a world slowly beginning to embrace the beauty of neuro-diversity, and you have so much to teach it.”
