The Heavy Gift

This morning I sat in my sun room waiting for my boys to wake up and for the momentum of the day to carry me away. I heard the birds begging for my attention but my mind was busy thinking about Corbin’s first day with his new teacher.

Corbin is ten-years-old, diagnosed on the autism spectrum and he is nonspeaking, but uses a speech app, gestures and noises to communicate his wants and needs throughout the day.

For those of us who know him well, there are many days where we almost forget how different our lives are, and how differently Corbin communicates. I’ve become so accustomed to “Corbinese” as I call it, that I barely miss a beat in our conversations. His eyes get wide as he juts out his chin and I know that’s an emphatic “NO”. He smiles and spins in a circle and that’s a “YES!” with excitement. He is looking in purses, pockets, and random drawers and I respond “Daddy said no more gum.” He yells and hits his head repeatedly and I remind him “you can have a piece when we get in the car. Just go listen to some music until we go.” He grabs his Ipad and goes upstairs to his swing.

There are days, even weeks, where we live in the ease of this little world we’ve created here at home. The world where our two year old, Liam, runs the roost, stealing Corbin’s toys and food. Corbin mostly lets him, but occasionally looks at us to intervene. The world where our 12 year old Landon rolls his eyes over something Corbin does and sharply tells him “Don’t touch my stuff!” Corbin ignores him, like brothers do, and waits for the next moment to take his prized possession.

We’ve adjusted to the normalcy of our 2 year old taking naps in the car, where Corbin’s vocal stims won’t wake him, and where the extra bed in Corbin’s room is used for the on-call parent. We take two cars when we go to birthday parties/events and one parent stays the course, while the other leaves however early is necessary to call it a “success.” What may seem peculiar, inconvenient or even impossible to outsiders is just our normal, and sometimes our normal goes so smoothly that we don’t think much about how it may vary from any other home.

Although there’s upsets, and challenges that seemingly come out of left field and knock us out of our groove, for the most part we’re just living our typical atypical lives. It’s not until we’re bringing someone new into the fold that I become acutely aware, and sometimes overly anxious about how to integrate all of these differences into other settings, with other people.

I remember a time when Corbin was younger and we were beginning to recognize that his autistic tendencies were more extreme than others in his class, or the support community we engaged with. I remember going to autism community events thinking this was where we would fit in, but many of these children were able to speak, or mainstream into the general ed classrooms. I remember thinking that I wouldn’t give up hope for Corbin, and at the time hope meant believing he would mainstream in school, that he would talk, that he would one day live independently, fall in love, pursue a career. In many ways “hope” meant “normal.” I had accepted that he was atypical, but I hoped his life wouldn’t be.

I thought that accepting that he may not speak, or that he might not live independently meant that I was giving up on him, and I struggled to hold a vision of him that was so far from the boy who stood in front of me. I was so confused about how to support him, and how to hold him in his highest light, and believe in his full potential. I didn’t even know what that meant.

At this time I met a beautiful woman Aileen. She invited me to attend Able Buddies dance night and meet her son Randy. Randy was in his mid-20’s, nonspeaking and living at home with her. We met for lunch one afternoon and she spoke of him with so much love and admiration. I learned about how much he loved Oreos, and musical greeting cards. She shared about the challenges, and hardships. She talked about his great sense of humor, and the joy he brought to her daily. When I first met Randy at Able Buddies dance night, I saw him and Aileen dance together, and I saw a love I was just beginning to understand. It was deeper, heavier, more brilliant, and expansive than what most of us share. It was beautiful. I saw what a gift he was to her, but I knew it was a heavy gift. A gift I was struggling to carry.

Aileen and Randy had a huge impact on my life because they gave me a blueprint to follow. Aileen had surrendered her need for Randy to be anything other than who he truly was, and that allowed all of us to see him as completely whole. He didn’t make me sad. I never once felt bad for Aileen, in fact, just the opposite. I saw something I wanted more than anything. Not just with Corbin, but with all my boys. I want them to trust me like Randy trusted Aileen, and I want to exude such joy when I look at their faces, the way Aileen looked at Randy.

Two years ago Randy went to be with Jesus, and I had only ever met him once in his time on earth, but he gave me a gift that I will carry with me always. He showed the true measure of a man, and he gave me a new picture to embrace and find solace in. He allowed me to ease into the gratitude I had all along. I thought that as a parent I needed to fight against a future I couldn’t understand, when in fact I needed to surrender, and give myself to it.

Able Buddies of North Carolina is a place where we come together to be who we are. Not to accept, tolerate, or raise awareness, but instead a place where we harmonize as families and show each other, within our most vulnerable moments, that each and every one of us is loved, valued and whole.

Why I Carry My Son

As a parent of a child with special needs. I was expecting the stares, the avoidances and the reassuring.
Today, I was told “I would not be carrying him”. “He can walk.” “Oh my back.” They exclaimed.
Sure, the person meant well, but is it something that should be said? Sure, I explained my son has special needs (I kind of have to). But I could tell the person was still kind of eh.
I carry my son at the age of 4 to keep him safe. Sure, it hurts my back eventually. But my number one priority is to keep him safe. If I put him down he will run away faster then I can catch him.
If I try to make him hold my hand he will force himself away or drop to his legs to get away.
My son is a runner. So I carry him to keep him safe. Sure, at times he rides in a cart or stroller. But in this situation it was easier to just carry him.
~ AMB  

ISO A New Best Friend

ISO  Best friend, must have a great sense of humor, compassion, be intuitive and know how to “take it to the grave”.  Preferably a woman, with at least one child, bonus if the child has special needs, such as autism, extra bonus if said child is a young adult.

She must be able to differentiate between venting and literal meaning in regards to husband ranting.  If I say “I want to kill my husband” she needs to know weather to hand me bowl of ice cream, or to start Googling “How to get blood  out of the carpet without fading the color.”

She needs to be able cheer with me when my autistic child reaches a long overdo milestone, and not get grossed out when I talk about some of the not so pleasantries that come with being an autism mom.

She needs to be able to look at me and know that I NEED to get out of the house and have a girls day, because the overwhelming black cloud that follows me around, is getting so close that it’s starting to block out the sun. Or that I need  her to just bring her hubby and kids over with a board game and snacks for a communal gathering.

She cannot be judgmental, especially about the condition of my house if she drops in unexpectedly, or about my weight.  However, she needs to motivate me by saying  things such as “Your house smells great,  I think it’s the smell of the fabric softener lofting through the air, from the heaping pile of laundry on the couch, waiting to be folded.” and “Come on, get your sneakers on, I feel like a 2 mile walk n talk.”

She needs to be able to read between the lines, when I say things like “Mary’s daughter just had a baby,  Mary is now a Grandma!”  and know that what I am really saying is “How lucky Mary is, I envy her, I will never be a grandmother.”

She needs to be able to blurt out the lines to a movie or sing a bit of a song that pops into her head as it relates to our conversation.  Bonus if she can join in as I do it.

She needs to be able to get along with my family, and mix well with the white collars, blue collars and rednecks.

Above all, she needs to know that most of this information that I share with her, has to stay hidden in the room that I have created, because no one on the “outside” can ever know… they just wouldn’t understand.

This position is open until filled,  compensation will be matched accordingly.  Serious Inquiries only.

~ASM