Category: Special Needs Mom

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GRACE & SPACE 

Earlier this week I took my boys to the playground. My two year old, Liam, is fearless and climbs, jumps and hurls himself around without a care in the world. My ten year old, Corbin, is much more cautious but equally busy, while my 12 year old is more reserved.. As I split my attention between them I was picking up on the distress of the Mom next to me. Her daughter was also 2 years old, fearless and busy as can be. Mom tried to safeguard but her busy little bee was obstinate and curious, never once caring to ensure that Mom could take a breath. I watched her try to lead her daughter into typical play, and I smiled at how strong and independent her little one was. It’s a personality trait I’ve come to know well. Afterall, I have three little boys who each march to the beat of their own little drummers, never much caring what society, or Mom, thinks they should be doing.

The Mom was exasperated and worried, but she lit up when the little girl offered my son her toy. Liam flitted off disinterested in the gesture and the Mom said “oh, I wish he would have taken it. She doesn’t usually engage with other kids.” I smiled and started a friendly conversation. She began to tell me how her daughter is in speech therapy, isn’t talking much and then she said her doctor wanted her to schedule an autism evaluation. I was about to mention that my sons are autistic, and that my 2 year old is also in speech therapy, and that he is also being evaluated for autism spectrum disorder, but I paused. I paused and reminded myself of what it feels like the first time a doctor says that to you. I remembered what it feels like to meet non-speaking ten year olds when your child is 2 and in that moment the scariest feeling in the world is “What if they never speak?” I remembered the rawness of my first steps along Corbin’s autism journey, and the fear of the unknown swallowing me whole. The mom continued “of course it doesn’t matter if she is. We just want to offer her whatever support she needs” the Mom continued to self-soothe as she shared with me how much she just wants her daughter to be okay, and she doesn’t care about a “label.”

I never told her that I had stood in her shoes. I never told her about where I stand now. I didn’t say “it’s easier the second time” or “there’s worse things than not speaking.” I didn’t say “it gets harder but you get stronger.” I didn’t tell her how it’s not at all just a label, it’s a lifestyle, and you will never ever have the life you imagined. You will fight and cry for that life. You will grieve and a piece of you will die, and then you will open your eyes and begin to embrace the life you have, with the child you love. You will move heaven and earth for your child, and they will silently wait for you to stop, let it all go, and walk this windy road beside them.

I didn’t say anything because I remembered what I needed most when we were embarking on our autism journey. I needed grace and space. I needed to think about it wrong, and self-correct. I needed to embrace it, deny it, get angry, and confused. I needed to be allowed to wish it wasn’t so, and then find ways to say it was good. I needed to tell strangers at the playground that everything was going to be okay. I needed to find a way to be where I was when I wasn’t ready to be there, and I didn’t know what I needed to do, or how I was going to do it right. I needed to be allowed to do it wrong. I needed to battle with regret. I needed to break.

I watched this mom cracking, and I told her how beautiful and curious her daughter was. I asked if she was always such a leader. Mom said yes, it was her favorite thing about her. We talked about her stubbornness and praised it. I asked how does she understand her daughter if she can’t talk? This was always my favorite question to answer. I would love to share about our secret language and how we never missed a beat. This mom told me all about how her daughter is so creative in getting her attention and her needs met. Mom began to relax as her fearless, creative leader commanded the playground.

There’s a lot of books, blogs, and opinions out there for moms raising children with special needs. Some are helpful, some are condemning, and others are overwhelming. I am mindful of how I try to “help” others because I’ve often found the help to add to the chaos.

I have two son’s diagnosed with autism, and recently a doctor suggested we do an autism eval for my youngest son, after his 2 year old well-visit. I’ve been processing this in all the ways a mother does, but there’s something unique this time.

Corbin is 10 years old, nonspeaking, and diagnosed with severe autism. I’ll be honest, when he was Liam’s age, the thought of him not speaking at 10, or having the challenges, and disabilities he has today were my greatest fear. I fought hard to ensure we gave him every advantage to make sure this wouldn’t happen. And yet, here we are, and every morning I wake up with so much joy and gratitude for the life I once feared. I have embraced the fear. I’ve snuggled it, and kissed it’s dirty forehead. I have played with it and tickled its feet. I am not afraid of it.

I hope Liam speaks, and I hope life comes easy for him. I hope he doesn’t have to endure the challenges that Corbin does, because they’re hard, and they require an enormous amount of energy from both Corbin and those who love him. That being said…I’m not afraid. Autism doesn’t scare me anymore. It’s no longer the unknown. We’ve danced in the abyss and lived to blog about it.

I know that I need grace and space to find my footing here. I know that Liam needs the same. I know that every mom who hears the word autism at their two year olds well visit needs to be able to fumble through their darkest fears and find their feet beneath them, and realize they’re okay. I know that sometimes while they’re doing that they may say or think the wrong thing. They may make mistakes, have regrets, and negatively affect their children and themselves in the process. I know this is the journey, and I’m not afraid of the mistakes I’ll make this time. I’m not afraid of the passing thoughts and feelings that I don’t know how to integrate. I know it’s all happening for me. I know that with every smile and tear Liam’s mother is being made. I’m not mad at myself for not being what he might need tomorrow. I am proud of myself for being what he needs today.

Dear Mom on the Playground,

 For a moment I got to watch your painful becoming, and it was beautiful. You are beautiful. Your daughter is beautiful. I see your future, and it is beautiful.

You are not alone,

Janaiah

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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.

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The Unhappy Mother’s Day

May 1992 was my first mother’s day, Randy was born on the 19th, but that one was my first.

My name is Aileen and the day Randy was born was the best day of my life.  I had prayed for years for someone to love me unconditionally, and that day was the day it happened.

Randy had some delays and at 3yrs old, he was diagnosed with autism.  However, that didn’t change him in my eyes.  He was perfect. Aside from colic, he was the happiest, most loving person I have ever known.

He was non-verbal so I never heard, “I love you” or “Momma”.  But, his hugs were serious, he held me so tightly that I literally could not pull away…and I didn’t want to.  He would squeal when he was happy, and giggle and vocalize all the time.  (We called it singing)

He loved watches, trains, planes, music, game shows and cartoons.  His room looks like that of a young boy, with lots of cars, trucks and stuffed animals.

He loved sitcoms too, and we could not eat a meal without the TV being on with his favorite show playing…for the last several months it was According to Jim.

In his room, his TV was always on if he was home.  And for years it was hooked up to a DVD player but last fall we started playing Netflix for him…and lately Scooby Doo was the show that was playing, if it wasn’t Scooby Doo, then it was a music station…and his favorite was a 50’s station.

Through the years we were blessed to have some amazing people working with Randy.  Kizzy, has been a constant in his life for nearly 12 years.  So much so that we called her his “other” mother.

When Randy was 22 he was “aged out” of school and Kizzy worked with him during the day.  It was at this time that I decided that he needed more than just a routine.  He needed something to look forward to, and I was sure there were others like him.   So a friend and I started monthly special needs dances.  This evolved into Able Buddies NC (Buddy is a nickname of Randy’s) a non-profit organization that still hosts monthly dances and will someday provide employment for our special needs community.  My favorite part of the dance was when we would slow dance to the song “Speak Life” at every dance. And I would whisper “I love you, you’re my favorite”.

 

On April 14th Randy was at Kizzy’s house for the evening, and she called me.  She said Randy had a seizure and she called EMS.   My husband and I arrived behind the ambulance.  He was dazed and confused but he seemed okay.  I told him that we were going in the ambulance and that it was going to be okay.   As I helped him outside he wrapped his arms around my neck and had another seizure.   He came out of it and we were able to get him (fighting) onto the stretcher and into the ambulance.

Once we got to the hospital, he had 4 more seizures, all with me holding him and telling him that “Mommy’s here, I love you, Baby”. That last seizure he pulled me to him.   The last one, he stopped breathing.  I stepped out of the room so that the doctor and nurses could work.

The next time that I saw him, he was gone.  I sat on the floor running my fingers through his hair and kissing him, singing and telling him that I love him and that he is my favorite.

The nurse came in and asked if I was interested in organ donation. And I knew that we had to donate what we could, so that his life would be meaningful.

I know that I could be angry, and yes for a few days my faith was almost gone.  But God showed me several blessings that I am grateful for.

Someone had prayed for a miracle…Randy was that miracle.

Randy could have died alone…I was the last face he saw, and the last voice he heard saying that I love him.

He could have been ill…he wasn’t

He could have died a horrible painful death…it was fast…4 hours.

He was with Kizzy, had he been home, he would have been in his room and I would probably not have known about the first seizure.

I was blessed with a happy, unconditional loving, handsome, son for nearly 28 years.

And my sweet baby boy, died a hero.

His funeral was the 2nd worst day of my life.  Randy was my world and I am so lost without him.   I feel like I have traded the “autism mom” club for the “bereaved mother” club.

 

I leave his TV on if I am home, and I sleep in his bed cuddled up to one of his favorite stuffed Cliffords.  I can’t go to sleep without telling him “Good night Buddy, I love you” . I still have a folded pair of his jeans sitting on my couch that I cannot put away and we still turn on According to Jim when eating .

Tomorrow is Mother’s Day and I am dreading it.  I am not a mother anymore.

So hug your babies, no matter how old they are, be sure that they know that you love them.

Thank you for listening.

Sincerely,

Randy’s Mom