living the “special” life.

I often wonder at what point in time will I feel like I have a handle on raising a special needs child. I mean I could say that about parenting in general. We hope we have instilled values that will guide our children into being positive and contributory adults. Unfortunately, in my home we are still in the stage of how many times can I tell you to “put on your shoes” and “where is your mask,” before I loose my mind. For me, it’s three times, apparently the owl from the tootsie pop commercial and I have something in common. I also appreciate that every parent has wondered this same thought.

We have days where we truly think we have hit our stride only for the top to stop spinning. To be honest we have days where we simply wait for C to quit life for the night. He as the ability to scream in ways which sound like we are torturing him. Which we are not. He looses his mind over having to shower, or learning a shirt isn’t clean, or a favorite show not being on, or the wind blowing from the SE. You try to help him work through the cacophony of thoughts in his head that is causing such turmoil but once that switch is flipped, you’re just gonna have to settle in for fight club. It’s miserable to ALL involved and finally the little boy who is now drenched in sweat has passed out, to sleep. This damped head little boy with his cherubic cheeks will curl up with his beloved rhino and Harry Potter blanket made by his Aunt B and sleep for hours. Dad and Mom simply look at each other and share a mutual WTF moment.

As Cs menu of needs will continually evolve for the rest of his life we realize we are truly still in the novice stage of special needs parenting. While C came into this world in chaotic fashion, we didn’t really have any suspicions that something wasn’t quite “right” until he was pushing 2. It would be another 3 years until we were working towards a formal diagnosis of autism, sensory processing, anxiety, fine and gross motor delay.

Now keep in mind our little dude started therapies for the smorgasbord of things above when he was 18 months. He doesn’t know life without his harem of therapists and specialized physicians. He recently learned his much loved occupational therapist is having another baby, he tried to negotiate his own break when Miss M. is on maternity leave. I’m not sure whether to be impressed or broken hearted. We try to give breaks now and then but for him we notice the regression pretty fast. Outside of summer vacation and holiday breaks, this is a full time job for him.

C currently spends about 20 hours a week in various therapies. This 20 hours is in addition to school. His day starts at 05:45AM. He is not a child you can rush in the morning. Getting dressed is a process. From how clothes fit, to fabrics, to colors; this is my least favorite task with C. We still struggle with buttons and zippers. Tying shoes isn’t even on our radar to learn. Brushing teeth is a source of misery too, from the sensory and motor perspective. So, we ALL get up early. Some days it’s easy peasy other days fight club, because going to school naked is not an option.

We are a house of full time working parents and a nanny to help bridge the gap. Like all working parents I of course feel “mom guilt,” am I doing enough ? If I stayed home would he progress faster? If my job wasn’t so consuming would I have figured out how to cure autism? That last point is a stretch but my point is there, am I doing enough?

Logically, yes. There are only so many hours in a day. We have more than one child. We have a couple dogs. We are allowed to do things without our children. We are allowed to do things on our own. We have also worked hard to build a life that is inclusive of Cs needs and allows him to be himself while learning and growing. Our social circle is pretty small for that reason. Our circus can been a lot and we try not to bring that show around anyone who can’t appreciate the value we’re offering.

Where we live I have not connected with other mom’s who live the balance I do. Special needs parenting isn’t any harder than traditional parenting, it’s just different…special. You learn to love differently, tolerate differently, accept differently. Your breakdowns are a little different. You occasionally screw up AM/PM meds, you was more sheets than humanly possible, and you wonder how you could love a child so much who just broke the 87th thing today. I’ll never know what it’s like to be a parent without a special needs child. We wouldn’t want that. We were chosen to be this little boy’s parents for a reason.

I know I’m not sharing any prolific words of wisdom. Heck I’m not sure I’m actually sharing much of anything. I just simply wonder at what point have we nailed this?

This weekend, while not all unicorns and skittles, the boy carved a pumpkin all by himself and made homemade applesauce. So, I’ll take those simple moments.