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.

The Best Christmas Present Ever!

When I found out I was pregnant at the tender age of 35 I was at the middle of a good career in commercial insurance, raising an 8 year old daughter and in the beginning stages of divorce.

Once we found out we were pregnant, we tried to reconcile, but it just wasn’t a healthy marriage for me.

When Bella was born prematurely, I was only 5 months along. That was the longest winter in limbo.  I also decided to give up my career in the face of the long road ahead raising 2 girls, especially with one facing an uncertain future.

Many questioned the decisions I made, including giving up a lucrative career, divorcing during pregnancy,  moving from a large city and moving  back to small town North Carolina, to surround myself with my village of family and friends.

When Bella was released from the hospital she was tiny. We didn’t have a home of our own, but my family opened up the doors wide for shelter and support.

Those early years getting Bella to her many Dr appointments and specialists were my top priority. My 8 year old had to grow up fast helping with bottles and diaper changes and tagging along to Speech, Occupational and Physical therapy along with treks to the Shriner’s Hospital in Greenville, SC for Bella’s cerebral palsy issues that affected her walking.

Back then, I felt guilty for all my oldest (we call Cookie) had to give up. Yes, the guilt weighed on me. Was I overlooking Cookie’s needs in order to focus on Bella?

I did the mom thing. I signed her up for basketball and cheerleading and tried to spoil her with material things. Cookie loved being able to be active in sports. She didn’t always like that, if I couldn’t find a trusted family member to watch Bella, meant either we chanced Bella having a meltdown from the noise or lights, and had to leave early or mom just had to let someone else take her to her practices and games.

As a single parent, especially if one of your children is special needs, we all face guilt or try some form of compensation for the other child or children. When the dreaded comment “ It’s always about Bella”  came from Cookie’s mouth, my heart broke for her, myself and Bella.

How do you explain to a child that she will have the privilege to grow up, have friends, drive, date, move away, and be an adult,  while Bella probably never will.

So yes, my life will always be about caring for Bella, but a mother’s heart also cares and prays and fears, for her other children to go out into the world solo one day, does it not?

This Christmas, Cookie gave me the best gift ever. No it wasn’t the Kate Spade purse or the expensive jewelry and makeup she spoiled me with. It was these words:

“Mom I have this nice apartment, a good high paying career at only 22, because of you.

All the times I had to get a “no” or adapt to a situation and see the decisions you made, although others didn’t understand it, with no apologies, and putting me and  Bella first, showed me how to be a responsible, compassionate adult. I’m not spoiled like some of my friends, because of the team you and I had to become, for my sister”.

Those words were a balmy and salve to my heart and soul.  Our children watch us. Not just hear us.

As parents of a child with an exceptional need, may bring  some guilty feeling within. We may question like I did, how do my other kids feel. Cookie is an adult now. I worry about her living  on her own, in another city,  more than I  worry about Bella, because Bella is always safe, with me a bedroom away.

In the beginning, I was just putting one door in front of the other, praying I was making  the best decisions for myself and both my girls.

It’s been an ever changing journey, but I wouldn’t change a thing after getting the best Christmas gift ever,  in Cookie’s words. I will let her continue to believe the Kate Spade was the best gift of the year. But my heart and spirit beg to differ.

~BBF

Non-Verbal Communication

Hubby and I took Buddy to town with us last week and we decided to stop at Denny’s to get lunch.

I cannot tell you how much I love doing this.  Mostly because 7 years ago, doing something so basic as going to lunch with Buddy was something that would cause me major anxiety, and quite honestly, we just wouldn’t do it.

This is one of the goals that I have to credit his care giver for.  She has been phenomenal, I think it’s because she is a foodie and takes Buddy to all of her favorite restaurants. And now he is a foodie too!

Anyway,  we took Buddy to lunch at Denny’s and when we got there, we had a 5 minute wait.  I kept whispering to him, “You’re doing great” “We just have to wait a few minutes” “I am so proud of you”.

We get seated and I sit on the outside of the booth and he is on the inside.  As we order our food and wait, I have my arm around him and I keep telling him those same statements.   I also turned on Spotify, because as we all know, music can be magic to an autistic.

Our food comes and Buddy eats every bite and a few of mine too.  Then as we wait for the check, he puts his arms around me and pulls me so tight to him that my glasses almost fall off my face.  As he kisses my cheek, I hear it, not with my ears, but with my heart.

My non-verbal son, just said “Thank you Mom, I love when you take me to lunch, and I love you!”   as he held me and kissed me again, I felt him say “You’re doing great, I am so proud of you!”

As we drove home and I pondered this wonderful experience, it occurred to me he does this every time I take him to lunch.  I think we need to do it more often!

 

~ASM