Steps Forward

I was at a bar and a woman approached me. She had just heard part of my family’s story from a mutual friend. The conversation was about where she worked and a program they do to help parents maneuver the system. The journey of a family like mine is often riddled with trying to understand the system you have been thrown into. Eventually, you discover that parents who have gone before you are your best sources. They understand what services are out there and how to get them. Being open, as I am, I have found to be beneficial for my family’s well fair. When you share needs or concerns, others have the opportunity to also share and often, brainstorm with you. My way is not the right way to someone more private. That is not my point, but I do believe sharing has brought understanding to many who do not live a similar journey. I also believe it has given us more resources because I am a person who seeks help from others. In the beginning, after Teale was born, we felt very isolated and alone. The behaviors that started about the time of Gwenn’s birth, isolated us more. Teale became very unpredictable and explosive. Her moods constantly swinging. At times, I’m sure, her mood swings may have appeared typical of a preschooler, but it was different and exhausting...

It was a challenge to get help or even empathy, that Teale’s rages were not “just” a five year old with developmental delays. Her rages were not our our parenting. They weren’t typical preschool frustration. Her intense mood swings were not because we weren’t more scheduled or because we weren’t learning sign language fast enough. Her mood disorder was mental illness, from her severe brain damage. Back then I was much less confident in my parenting of Teale. I believed every negative thought thrown at us. I believed it was us, I believed it was having Gwenn, I believed just about any reason, because all I wanted was normalcy. I wanted the behavior specialist to be miracle workers, I wanted the psychiatrist to fix, not just Teale, but us all. We were broken, our hearts ached but we clung to our faith. I've lived much since those early years and what I've most learned is that I need to believe and trust in me. I would love to get the chance to be on the front line, with a family going through the very difficult beginning stages of mental illness. I would love to help them feel heard and loved. My wish would be to give them hope, because with hope, you can step forward. 

Elmo

There is a video floating around facebook right now that hits home for my husband, Mark and I. The video is of a young Mom talking about "The Last Time."

She has a son diagnosed with autism and she tells a story about being in line to see Elmo, with her raging 65 pound son. That was the moment she realized his life was different from those children and families around her.

We had this exact moment, when Teale was 4 years old. Her raging was new and we were still trying to figure out the "what' of it. Was it our parenting, was it the recent birth of our youngest child, was it Teale's brain damage? Teale adored Elmo. We had just had a Birthday party for her in December with Elmo showing up as a surprise. Teale was beside herself, excited to have Elmo at our house. She didn't even notice her favorite cousin was suddenly missing. Zac had volunteered to wear the Elmo costume for Teale. Her joy was contagious, you couldn't help but smile as she used sign language and her voice to talk to Elmo. It is one of my most favorite memories of a time we gave Teale, exactly the perfect gift of joy.

So naturally, when Elmo came to town a few months later, we trotted off to our favorite children's museum, to see him. We had to stand in a very long line with many typical families. I had Gwenn, our newborn, in a sling on me. Beau was 7 years old and a good sport, knowing Teale's love of Elmo. Teale did not understand the line, she didn't understand taking turns. Teale wanted Elmo and there was no reasoning that could be done. Mark tried to control her as people stared and whispered. She appeared "normal' in those days and we looked like terrible parents, who spoiled her. The rages were new and we had no clue how to deal. The doctors had not warned us that her cerebral palsy and severe brain damage could cause much mood dysregulation. So Teale raged and in those moments, I remember wanting to scream at the top of my lungs, she has severe brain damage. You see, the invisible can be quite difficult. The child who presents "normally" makes others judge you harshly. I have been heartbroken by many strangers and "friends" alike, who think we should control Teale.

So let's fast forward to just a few weeks ago. Teale is now 19 years old and we have offered to take her and a friend to The Razorsharks game in our hometown. The Razorsharks are a basketball team and on that day, much to our surprise, Elmo is there. My 19 year old, 230 pound daughter is thrilled! This moment, is a deja vu for me. I am taken back to when our family was young and Teale's mental illnesses were not yet diagnosed. I am taken back to when hope lived in my heart much more strongly than it does today. I was naive back then, I was sure we would conquer all and Teale would live a typical life. Tears are dripping down my face as the words spilll from me right now. That moment when you finally realize and or except your child's life is not going to be, the dreams and hopes you had, is BRUTAL.

I'm not sure when I realized that love would not conquer all. I'm not sure what caused my shift in realizing Teale would never be a teacher or a musician or any kind of professional. I'm not sure when it hit me, she would not marry or have children of her own. It was slow and at the same time, it was all at once, when my heart broke. When I finally understood my daughter would never outgrow needing Mark and I.

So what is the sunny side of this? What fantastic life lesson have I learned?

Here it is, love does not conquer all. the Bible implies that if we believe enough, all things are possible. I am a person of faith, I believed Teale would use her right arm, because I would find that magic cure. I believed she would read well and learn at an age appropriate level. I believed Mark and I were strong enough, good enough and caring enough to cure Teale, of all she struggled with. I believed in the miracles, that would make her better.

So, at what point did I come to the understanding that Teale is perfect in her own way? When was that moment of clarity? Or have I even hit it yet? The truth is I am in and out of those moments. I have faith and God by my side, but I am a Mom, full of emotions. I hurt for the losses Teale experiences and does not even understand. I hurt for myself, the knowledge she will always need Mark and I. The understanding that our "Golden Years" will never be alone. As others complain about empty nest, I wish for it...

There are times I wish I could go back to Teale's birth and right, the wrong. There are times, it feels perfect, that this is my family.  This is what Mark and I were destined to be. My grief is real and somehow unending. Every milestone a friend's child achieves can throw me into that dark place, where the "what if's" haunt me.

So as I thought about "the last times" in Teale's life, while watching the video of this young Mom, tears rolled down my face. Seeing her hopes and dreams crushed, reminded me of myself. It reminded me of the strength I can display on the outside, while I am seriously breaking on the inside.

The pain is not nearly as bad as is was in the early days. While I watched one milestone after another, not achieved. I then tried to find strength, in the slow progress, I did see. I have accepted our path in many ways and in even more ways, I believe, I have embraced it. I have embraced the community of people Teale is a part of. I have chosen to work and volunteer in the field, as it feels more like a calling, than a job to me.

But, I need to leave you with one last thought, it hurts, it hurts me every day of my life, to watch my daughter to struggle. I will not apologize for this, I will not sugarcoat my loss. Teale will never be the same as a typical child.
I will never be the same, as I was, before she came into my life.

Respect is the “R word”

We didn't plan on having a daughter with Developemental Disabilities. Mark & I planned on having brilliant children, gifted even. We wanted to have 4 or 5 children, but Teale happened & we knew our limitations. Those dreams seem so far away now. We may have been thrown into this world of special needs and mental illness but we chose to embrace the cause & the community. We chose to love & to learn. It is a cause I never knew could make me feel so passionate & empowered. Life throws you curves, but our "curve" is our heart & our soul. Teale needed to be, because without her, Mark & I would not know the community we embrace and love so passionately. RESPECT is the word. Live it, love it, be it!

I found this post on a Facebook memory. It is a post about pledging to end the R word. Ending the use of the word “retard” became a campaign a few years back. In my childhood, calling a person  “retarded” was a common dis people would say to each other. Now a days, the world is more aware of being respectful and kind. Bullying is a hot topic and teaching children kindness is much more in fashion than when I was young. As kids, we often fended for ourselves and fighting amongst ourselves was just part of childhood. Parents didn’t get as involved back in my childhood. If there was an issue in a group of kids, generally our parents just told us to “work it out.” Words like retard and in my area, BOCES, was thrown around as an insult. BOCES is a local agency that provides therapists and supports for children with special needs. Something our family has relied on heavily. As a kid, I’m absolutely sure I had no idea what BOCES meant, but I knew it was meant as an insult.

Adults are much more involved in helping children to learn to be kind to each other, than when I was young. There is usually much more intervention when children are having difficulties getting along. Anti bullying is a common program in schools. I’m not sure if it’s because bullying happens more these days or because we are just much more aware. Internet bullying is more difficult to catch and commonplace because of being able to hide behind a screen.

So as I started this post, my point was, we didn’t choose to be a part of this community. Our Teale happened and we were thrown into the world of special needs. We learned how beautiful the people are in this community and we have become vigilant advocates of the special needs population. As a kid, retard was an accepted horrible name to call people. Now when I hear it, my heart sinks and all I can think is how sad it is that the person using that word, doesn’t understand just how beautiful love truly can be.