The Change I Made That Helped My Daughter Love School Time

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Today I woke up early, made myself a cup of coffee, and went outside to overlook my backyard that I had worked hard on a couple of years ago. It took me a few weeks of digging, planting, and laying landscape fabric to create the garden I had always wanted. As I sipped my coffee, I admired the way it had all come out so beautifully. Everything was starting to bud and bloom, and I could envision how lovely it would look in just a couple of weeks.

My mind wanders back to winter, and how hard of a season it was for my child with autism and me. Winters are harsh in the Texas Panhandle and they were no less harsh inside our home. My only daughter suffers from autism, anxiety, SPD, and panic disorder. Last spring, she was enrolled in a PPCD program in our local school. We only attended for six months. Each day, I would take a screaming, flailing child to school. I tried to make our routine so perfect, even though each day when we got to school, she would start a tantrum. To say she hated it was putting it mildly.

She would pee on herself and throw up when entering the school. She did not bond with one teacher or any of the special needs children in her class. She would leave me crying, and I would pick her up crying. It was exhausting, and after six months of this, we quit. I could not put her through this anymore, and I could not handle one more day of seeing my child miserable.

So we took the winter off. I was a stay-at-home mom and I was keeping my already-behind child out of school. I got the disapproving glances from therapist, teachers and ARD specialists. I did not really care; I have never really cared what others thought about my decisions. I knew in my gut public school was not working. We kept up with therapies, but my child slowly stopped attending even those. She would throw tantrums every time we showed up at her center. So we took time off from that, too. We spent six months together, with me as her full-time caretaker and her taking a break from it all.

During this time, I was exhausted. My house would be literally trashed by the end of the day and I would spend every evening cleaning, mopping and righting all the destruction of the day away. The days were spent playing, running errands and doing several messy projects at home. It was tiring, but my child was happy.

I started to investigate private school. I found a school and toured it with my husband and my child. It was a small, private school for kids with autism, and it was attached to a thriving therapy center.

My husband and I both liked the look of the school and the fact she could receive her therapy during the day while she was already attending school. She would be on an individualized learning plan and could progress as fast or as slow as she was able. My only hang-up about the school was the cost. Public school is free and the tuition of private school rivaled my high SUV payment.

My husband was the only one working and as we sat to try and figure out the tuition, we could not come up with a solid way to make those payments work. We just did not have enough money. Eventually, I found a part-time position as a bookkeeper. I started my new job on the same day Gabby started her first day at the new school.

Walking through the front door, the director of the school told me she would stay at Gabby’s side until she was ready to join the school full-time on her own. Knowing someone would be at my child’s side like a mother, to keep her safe and happy while she got comfortable, gave me instant peace. It only took two days for my child to feel at home at the new school. The second day, she was waiting by the door, ready to go to school. Dare I say, she was excited. My child who spent six months throwing up at public school was waiting by the door, excited to go to her new school.

Three months later, my child is still waiting by the door. What I realized is that we needed that winter to figure out a new way forward. We needed time, time to take a break from the therapies and classes and to let her just be a kid.

It gave me time to investigate other options for schooling and therapy. My child is now receiving individualized education in an environment catered to her, and for only her. She has blossomed into a child with friends who are just like her and she is having a wonderful time at school.

Every day she comes home and she explains to me a new word she learned or a yoga pose she learned during her PE session. She is happy; finally, she is happy. It took all winter, but with time, we found a place for her. I am happier working a few hours out of the house and she is happier all around.

So as I sit looking at my garden that was not much to look at this winter, I realize that sometimes we as people need to take some down time, just like the seasons do. I will never regret that harsh winter. It makes spring that much more beautiful.

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What I Owe to Cerebral Palsy

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Dear Cerebral Palsy,

I spent many hours in my youth day dreaming about who I would have been had it not been for you. Sometimes my dreams were grand, and able-bodied me would have been an Olympic gymnast who competed in Atlanta for a gold medal (I am short; that’s really all you need, right?), while other times my daydreams centered on that cute boy asking me to dance. As an adult, this is what I’ve come to understand: without you… I wouldn’t be me.

We have had our bad days, like when I ate lunch in the bathroom for most of fifth grade to avoid the teasing and bullying. If able-bodied me had avoided that, would I have still talked to the girl crying in the back of Spanish class in sixth grade? I can’t imagine the last 20-plus years without that friendship.

We had our days filled with arguments and anger. I thought my parents pushed me too hard because of you one second and held me too close the next. Instead, you gave me the chance to see them in a different light; my mama was the friend I had when no one else was there, my dad the strength I needed to keep moving forward because he never let me say never. Every single day I am grateful to be their daughter… but would able-bodied me have seen it? How they sacrificed for their children?

We have had days filled with physical pain and struggle that came with hours upon hours of therapy and stretching to gain control of my body. If I hadn’t done that, would I still have decided to be a therapist myself? Or If I had would have been nearly as able to support my patients and say “I understand” with actual meaning behind it? Or worse yet, would my pity keep me from pushing them in the way I was pushed? Because I need to know I do everything I can to help them reach their full potential.

We had our days where you made me blind with jealousy for my able-bodied siblings. I wanted to be them so badly. I now know that their lives revolved around my treatment and they had every right to their own jealousy and anger. But they were also my best friends and biggest defenders. Would I have seen the strength in my sisters if not for you? Would I have been as close to my brother?

We have had our days when little things become big. Frustrations became all too much. It was on some of those days that you afforded me a unique opportunity to see the good in people; that man who stopped to hold an umbrella in the pouring rain because my hands were full of crutches, that teenager who shyly asked if she could help me load my groceries, my mom mentioning out of the blue how proud she was of me.

We had our days when I blamed you completely for the fact I was alone. That cute guy in college told me if it hadn’t been for you, he would date me. I really wanted you gone then. I was sure I was going to be alone forever. Would able-bodied me settled for a person who focused on looks? Would I have missed out on the amazing man I call my husband? The one I fall a little more in love with every time he gets angry about something not being accessible, cracks a joke about needing to help with my shoes or knows exactly when I just need to be held without a word as a wave of pain comes?

Even given the unique challenges you’ve placed on us as a married couple (I will spare you the gory details, but sex and CP can be let’s shall we say… interesting) have shown me in a million little ways that he is my Prince Charming.

We had our days when anxiety paralyzed me thinking about being a mother who couldn’t do everything for her child. You and pregnancy ganged up me. I wasn’t sure I could deal with the pain and helplessness that two of you created for me. I was sure that this had been the wrong choice, that the amazing support from my friends and family weren’t going to be enough… but then she was here.

My body that so frequently betrays me did something so incredibly right. This body I have learned not to trust did something so perfect that even now, thinking of her, I have to catch my breath.

It’s partially because of you that my daughter has so many involved adults that love her. There is never such a thing as too much love. In looking at her tiny face or hearing her infectious giggles, I know I would do it all again in an instant.

My dearest cerebral palsy, we are not done with our struggle. I know as I age these struggles will change, evolve and surprise me. I know, too, that every day I am grateful to wake up and be me.

I’m happy to be my parent’s daughter, my patients’ speech pathologist, my husband’s wife, and my daughter’s mother. I don’t know where I would be if not for you, so as I think about where I am all I can say is thank you.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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When My Son Told Me He Wouldn’t Opt Out of Having His Disability

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Recently while watching my son play soccer (power wheelchair soccer, that is, as he has cerebral palsy and uses a wheelchair for mobility), I stepped outside of the gym for a moment to encounter a man who proceeded to comment on how sad he was. It took me a moment to realize the gentleman was referring to the fact that all these young people were using wheelchairs and how terribly sad their lives must be. So I took some time to talk to him about the fact that, actually, everyone out there was having quite a good time and I doubted they would want anyone feeling pity for them.

I’ve frequently pondered this idea — of pity for those with disabilities — especially after great sporting events such as the Olympic and Paralympic games, where we celebrate every individual’s accomplishments and unique abilities. Although our society has come a great distance in embracing ability instead of focusing on disability, many people still see individuals who require varying levels of support as somehow needing our sympathy. It’s interesting, though, that many people with challenges I’ve met actually wouldn’t want to change who they are and certainly would not want other people’s pity. Many were born this way and know no other life.

My son expressed this to me a couple years ago when we were discussing heaven and that, perhaps there, he wouldn’t have CP. He clearly exclaimed to me that he loved having CP and wouldn’t want to “not have it.” 

This struck me as interesting, and I felt this must be one of his unique quirks. However, during the 2010 Paralympics, when he had the opportunity to meet several members of Canada’s sledge hockey team, one of the players, who had been born with spina bifida, expressed that he would never want to be any different. He’s been afforded many opportunities in life; why would he want to change anything? 

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With this in mind, I further consider my role as a parent of a child with a disability. When my son was young, and even now, I would have given anything to have him be able to walk and be just like “every other kid.” Countless hours have been spent on therapy. My husband and I are rarely able to go out alone. Many, many dollars have been spent on home renovations, equipment, etc., and many battles have been fought to receive services. So, yes, it’s a lot of work,  and it’s not an easy road for parents to travel. However, if given the option, my son’s desire would not be to walk and be like everyone else.

The only time I can remember him being sad about his disability (apart from all the surgeries he’s had to endure) was when he was about 6 years old and was denied access to the skating rink because of his wheelchair. He felt this was unfair and was saddened that his friend got to go skating while he couldn’t even go on the ice. I, of course, responded with anger, but, in the long run, something good came out of it; the rink changed their policy, and no other individual who uses a wheelchair has been denied access since.

I also find it interesting that people with disabilities are often seen, somehow, as weaker members of society when, actually, many of them have been through far more than the average adult will ever have to experience. They’re strong and resilient. I recall my son’s amusement on grade nine immunization day and how many of his fellow students were terrified of the pain they’d endure (he described it as “freaking out”); to him, of course, a simple shot in the arm is less of a challenge than eating breakfast, so what’s all the fuss?

Really, what I’m trying to convey is, yes, it can be incredibly challenging having a child with a disability, and I often feel like my heart is being torn, but my son has taught me more than I could ever learn from a book. I have a far greater appreciation for the small things in life. I’ve often found strength that I otherwise would never had known was there. I believe my son is a wonderful gift from God, as is any other child. And my role as his mother? Well, I guess a big part of it is to help him reach his full potential — that may not include walking, but I know it will include being a valuable member of society, having fun, being happy and having the opportunity to experience the things he wants in life. I’m also so thankful every day that I do live in a society may still have a ways to go in terms of varying levels of acceptance but offers so many opportunities to celebrate every individual’s abilities.

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The Moment That Showed Me My Daughter’s True Strength

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I have to admit that I used to feel pity when I saw someone who was visibly disabled. Then I found out that my own daughter was going to be born without fully formed arms.

I went down the guilt road, believing that it was somehow all my fault. Then when she was born, we found out that not only were her arms different, but that she also has a rare genetic disorder that causes delayed development. She would be extremely small for her size.

I continued down the path of feeling sorry for myself and guilty for way too long. Then after all of the struggles, the tears, the sleepless nights, and the wondering what her future could really be, she smiled at me. It took six months for her to smile, but something so simple held so much promise.

Now I had loved her since we found out about her, do not get the wrong idea about that! But a small tiny smile made my whole world change again. That was when I knew she didn’t give up on me, so I could never give up on her. She made me strong and I was not going to let her down. I was not going to give up on her and I was not going to let her give up on herself.

We were told by doctors that “normal” for her would be sitting up by age 2 or 3, and that if she ever did stand or walk, it would be years after that. Well we decided that their normal was not an option. She was stronger than they gave her credit for and, well, a syndrome is more of an overview, not a blueprint of how each child must act and grow.

After many days with PT, OT, and ST, she has thrived. Sitting up alone on her first birthday and standing with minimal assistance shortly after. Now at a little over a year and half old, we are working on standing alone and even taking steps, with a little balance assistance.

She is still tiny, mind you: 10 pounds at 21 months and only 22 inches tall. She has learned to do things her way and with minimal help from us, and she plays with her toys and knows how to get your attention very quickly.

Now I get irritated when people tell me they are sorry or feel bad for me. For WHAT??

You feel bad because I have an amazing, one-of-a-kind angel I get to play with and snuggle with every day? I feel sorry for all of them because they don’t!

Instead of feeling guilty, I feel that I was blessed to be chosen to be her mommy. I was given my personal angel to hold and keep with me.

This is my little love, my Bella Marie!

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11 Years After My Daughter’s Diagnosis, This Is What I’ve Learned

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Dear Cerebral Palsy and Epilepsy,

When we first met, you were bold and scary — an ominous force. We knew nothing about you. All we could see was the beautiful baby girl you were stealing from us. All our dreams and joy seemed to disappear in an instant, and all we could envision was fear, pain and sadness.

But she would not let you steal her. She was stronger than you both. She fought and she lived when medical predictions indicated the opposite.

Eleven years later, here we are. She is a beautiful, healthy, happy yet profoundly disabled little girl. You haven’t left, but we’ve learned to live with you. She wakes up every morning with the biggest, sweetest, most beautiful smile — a smile that says, “Hello, world! Here I am!” She cannot walk, talk, sit or feed herself, but she is the joy in every breath I take. She has an infectious smile, a laugh that is contagious and a magnetism that is undeniable.

Cerebral Palsy and Epilepsy, you have not stolen anything. You have granted us the opportunity to live in the presence of an angel. She has had to face obstacles from surgery, pain and discomfort, but her strength shines through every day. She may be visually impaired, but she sees in her own world. She may not understand our world, but she understands hers. She is locked into a peace we can only imagine. She has helped us learn so much and experience things we may never have without you, Cerebral Palsy and Epilepsy. We have swam with dolphins in dolphin therapy, we have walked with elephants and we have met the most majestic horses in hippotherapy. We have explored the world through her, and we are better, stronger people because of her.

Because of you, Cerebral Palsy and Epilepsy we know absolute, unconditional love.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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What My Depression Taught Me About Compassion

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I’m writing this because I believe my depression offered me a small window into the world of those who know they are different from the majority, those who feel incapable of fully participating in society. My last two cycles of clinical depression taught me to have compassion for those for whom such struggles seem part of an inescapable reality.

Depression affects everyone in unique ways. A recurring theme for me is being robbed of many cognitive, social, and emotional abilities. While I haven’t figured out how much of it is real, and how much simply a matter of distorted perception, it all seemed to me like an objective, permanent reality (and there was no talking me out of it — just ask my therapist, my family, my boyfriend, and my close friends).

I distinctly remember what it was like being at a friend’s 21st birthday party. I excused myself to go to the bathroom many more times than necessary, all to avoid having to converse with another person. I don’t know how to hold a conversation. I wouldn’t know how to respond and react appropriately. All it would take is one sentence or one stammer and I’d be exposed. They would know I’m a freak. And then they would either walk away, or at best they might stay out of pity. 

At the dinner table, I freaked out when an academic asked me what I was majoring in in college. I knew that the moment I said Sociology, he would follow up with a question that would expose my ignorance and my failure to understand my own discipline. And I dreaded how everyone at the party would inevitably ask, “Where do you go to school?” Because I knew what they’d expect when I told them I went to the University of Chicago. They’d expect me to be intelligent and insightful, and I would hopelessly fall short. I didn’t even dare to talk to the little children at the party, believing that I would be looked down upon even by those a whole decade younger than me.

It wasn’t just in public. I found this picture of me (in green) and my sisters watching “Midnight In Paris” at my apartment.

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You can’t tell from looking at the picture, but while my sisters both loved the movie (as do most who’ve seen it), to me it was torture. I couldn’t really pay attention to the plot or dialogue — I was too busy feeling tortured about not being able to identify with the thoughts, motivations, and emotions of the characters in the film. The credits rolled and I had no idea what the movie was about.

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And here’s a picture taken on graduation day.

It’s an iteration of classic goofy shot I often took with my friends. Except this time, it wasn’t funny to me because all I could think of was how I would ever justify being a UChicago graduate when I was so “dumb,” when I could function neither in the classroom nor in the real world, when I believed my life was “over” because I’d never be able to get/hold a job or start a family in the future.

Not long after this picture was taken, I began going around saying my goodbyes as if I’d never see many of these people ever again, as I was planning to go into reclusion for good.

And as I come out of depression, as my mental agility, emotional energy, and ability to relate to other people are coming back, I haven’t been able to forget how lonely and out of place I felt all those months. Those feelings of not belonging, of not being able to live up to the expectations of society, will always remain fresh in me.

And this is how I believe God humbled me, and instilled in me new and deep love and compassion for those who similarly struggle with society’s expectations. I invite everyone out there to reflect on how you’ve perceived or treated our brothers and sisters who don’t meet the constructed, arbitrary standards of beauty, success, and so-called normalcy.

The Mighty is asking its readers: What’s a moment or situation that changed the way you think about disability and/or disease? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

This post originally appeared on Under Reconstruction.

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