To My Son’s Doctor, From an Extremely Grateful Special Needs Mom

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Dear Dr. N,

Do you remember Will’s latest annual checkup visit?

You pulled me aside to share with me how you thought Will was doing. You brought your head close to mine, and, as if we were some conspirators hiding in the hallway, you grinned at me and whispered, “Your son is quite a remarkable young man.”

This statement was so profound in its truth that I had to rapidly blink my eyes in order to keep from crying. Not missing a thing, you patted my hand and recounted your humorous conversation and interaction with Will – something that you apparently look forward to every year. Our shared laughter put a halt to my tears. You then pasted your patented “I mean business” expression on your face and launched into what you would do to ensure Will would get all the support he needed that school year.

As we finished up our conversation, and you were walking away, you turned back to face me, and said, “I am so proud of the fine young man that Will has become. You’ve done a great job, and like I told you before, he’s going to be just fine.”

And with that, you strode off, leaving one extremely grateful parent in your wake.

Dr. N, my son is fine today in no small part because of you.

You were the first person who was determined to find out why Will was exhibiting the behavioral issues that caused him to feel marginalized and rejected by so many people.

Rather than dismissing him as a misbehaving or hyperactive child, or dismissing me as a poor parent, your determination to identify the causal factor as to the why behind Will’s difference gave me the powerful knowledge that both Will and I so badly needed — the knowledge which would unlock the doors to the services that would help him succeed in life.

You were the first person to tell me that I, as a parent, was doing a good job.

Rather than looking down on me for having an out-of-control child, making hurtful and condemnatory comments or refusing to associate with me, you took the time and effort to encourage me and bring me hope. You pointed out to me the areas in which I was excelling as a parent, and you reminded me there’s no substitute for a mother’s love. Your reassurance empowered me to stand strong in the face of rejection and dismissal born out of ignorance and to proudly and unapologetically advocate for my son.

You were the first person to find delight in my son’s differences.

You never became irritated or disgusted by Will’s constant jerky movements, off-the-wall questions, inability to sit still, lack of eye contact and unexpected meltdowns. Instead, you allowed him to move around during appointments and gave him the challenge of mastering specific movements. You answered his seemingly inane questions in a way that showed you were dignifying him as a person of worth. You found humor in the unexpectedness of those questions and told Will his questions made your day. When Will started to melt down, you didn’t make me leave or look at me as if I was a subpar mother. Instead, you simply carried on a conversation with me about some intriguing and arcane bit of medical information, knowing Will would rather learn more about science than continue with a meltdown.

Rather than insisting he always look you in the eye when talking with him, you’d let him look elsewhere for most of the conversation. But at least once a visit, you always made sure to get down on his level, take his face in your hands and bring your face close to his so your eyes would be right next to each other’s. That technique helped my son learn to look me in the eyes when we talk now, a gift for which I will be forever grateful.

You were the first person to tell me my son would be just fine. 

Instead of letting me continue to operate under the misconception that Will’s exhaustive patterns of behavior would continue, you constantly reassured me Will would always be different from others. You also reminded me this was a good thing, since the world would be boring if everyone was cookie-cutter copies of each other. Still, you told me he’d grow out of some behaviors and learn to better cope with others. Your reassurance gave me hope.

You were the first person who told me it was OK to feel sad that my life was harder.

You never told me to count my blessings because other people had it harder. Instead, you told me it was all right to acknowledge that things were hard and that life is often unfair. That gift removed some of the guilt I’d been carrying around and allowed me to acknowledge my losses. You were the first person to tell me it was OK to enjoy parenting a child with special needs and autism.

Instead of just seeing the challenges of the situation, you reminded me there is a certain joyous freedom in looking through life in the eyes of my son. You urged me to splash in mud puddles with my son, dance outside with him during rain showers and experience each innocently-sought sensory experience with the delight I would have exhibited when I was a child.

Dr. N, I will forever be grateful for all you’ve done for my son and me. Thank you for using your profession to make a positive impact on the lives you touch. Thank you for going far beyond the parameters of your job to ensure one remarkable young man will be just fine.

He will be, thanks to you.

With all my gratitude,

Will’s mom

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The Mighty is asking its readers the following: Write a thank you letter to someone you realize you don’t thank enough. If you’d like to participate, please send a blog post to [email protected] out our Share Your Story page for more about our submission guidelines.

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When Friends Think I Live the Easy Life but Are Unaware of My Disability

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“People would love to have your schedule,” my friend said when I told him I would be increasing my swimming to four days a week. What was left unsaid in his comment and my internal reaction covered my invisible world of disability. How often have I wondered whether others understood how I must manage every hour of every day to minimize stress in order to minimize my symptoms?

I know why I live my life the way I do. If I manage my life very well, no one sees my disability, other than my neurologist.

I swim because it calms me down. I swim because it helps me coordinate my movements. Without swimming, generalized dystonia makes my limbs and torso move with a mind of their own. I don’t want friends to see my body moving beyond my control. I have never gotten over the shame of those close to me seeing what my body is like without exercise and medication. I feel ugly. So I swim.

I wanted to scream, “You don’t understand! My life is not all rainbows and vacation, rest and relaxation!”

I wanted to say, “Do you think it’s fun having to stop work and live on limited resources? I used to go on vacation. I love to travel. I don’t know if I will ever be able to do that again. 

Do you know what it is like when your life changes overnight from a full, active life to being bedridden, losing your home to foreclosure, losing your job and friends, losing your livelihood and waiting two years for disability and not knowing how your symptoms will develop? Wondering if you would lose your ability to walk?”

Elizabeth Schultz the mighty.2-001

In a split second, all of these thoughts went through my head, as well as a confirmation of my assumption that others think I have found the easy life.

Yes, I now have time to volunteer and time to spend with my parents.

Yes, for the first time in many years, I sleep enough and exercise.

But I doubt if he knew my schedule, he would love it. It’s frustrating to have to wait for my brain to be in the right place in order to fill out forms. When I am tired, which is every day, it’s difficult to work my way through a form. Some days, fatigue pulls at me moment by moment. I must push it away continuously to keep from spending my hours in bed. Buying groceries and cooking meals is overwhelming physically and mentally much of the time. I have to keep my menus simple and hope I can eat right.

I feel like a vulnerable adult. When everyday stress becomes too much for my brain, my symptoms lock me in contortions, and it’s physically easier for me to accept injustice than to fight it. Fighting injustice means opening myself to my writhing movements. If I chose to fight, I chose to take energy from the activities that make me well. Will I be able to take care of myself? Will others be able to walk over me because I can’t fight for myself sometimes? My friend didn’t and can’t see these daily struggles.

The best I could do the moment he made the comment was to let him know that swimming is my physical therapy and the more I do, the better I function. I need to swim for my health. He understood, but how do I convey that living with a disability is not an enviable schedule?

September is Dystonia Awareness Month. To learn more about this neurological movement disorder, contact the Dystonia Medical Research Foundation. To sign the White House petition to have September formally recognized as Dystonia Awareness month, click here

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The Doctor’s Words That Flipped My Perspective on My Son’s Disorder

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July 4th weekend always starts off with a bang of some sort, usually fireworks. For my family, though, the bang of Independence Day weekend 2011 was the crumbling of our world as we learned that whatever was wrong with our precious 18-month-old son Andrew would be lifelong, life-altering and likely life-ending.

The weekend was a blur of needles, blood vials, consults, stethoscopes and aching bones from pacing hospital floors. My heart broke with each needle that pierced into my sweet baby’s body. During our final hours in the PICU, we were told Andrew’s blood would be sent out to three different labs for a myriad of tests. 

As I sat there feeling the fear of losing my son engulfing my heart, my mind reeled from realizations and visions of things no parent should ever have to consider. I wondered how in the world I’d ever be able to leave that hospital room and walk forward in life knowing my child, the part of my heart I wear outside my body, would likely live a life of pain, both physical and emotional, before he’s taken from me. Then his attending physician spoke the words that flipped my whole perspective: “He’s here now, and he’s happy.”

At first I was taken aback. I didn’t like what those words implied. I tried to brush them off, but they never truly left my mind. Even now, four years and the diagnosis we were most afraid of later, they bounce around my head whenever I think to the future and the darker times it holds. “He’s here now, and he’s happy.” It’s the phrase that snaps me back into the light. That simple sentiment reminds me this little boy needs me to appreciate today. Right here, right now is all any of us has. I cannot — I will not — spend what precious time I have with this boy drowning in the unjustness of what’s to come. I don’t want to miss the blessings of today — the giggles a falling tower of Legos brings, the awe of hearing him read his first whole sentences, the sweet smell of his head when I’m carrying him up the stairs. I’d miss all of that if I allowed myself to wallow in anticipatory grief.

In 1 Thessalonians 5, Paul tells us to “Rejoice always, pray continually, give thanks in all circumstances.” Giving thanks for Duchenne? How do I do that when the disease is breaking my son’s body down? By remembering those words: — “He’s here now, and he’s happy” — and falling on my knees in gratitude to God for this child, for this day, for these blessings. To get to have Andrew for even a few years? How lucky am I!

Follow this journey on Homemade Tater Tot.

The Mighty is asking the following: Describe a moment when you were at a hospital and a medical staffer, fellow patient or a stranger made a comment that stayed with you. How did you respond to it? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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To My Cousin Who Passed Away From the Same Disease My Son Faces Now

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Hello, Lexi. I don’t know if you remember me, but we met twice before we had to say our last goodbye. Your mom is my aunt, and when she had you, I first learned of spinal muscular atrophy (SMA). I remember your room was filled with machines that sustained your life, and you required intense 24/7 care. The rest was a blur, but I know you were loved by so many.

Little did I know that not long after your passing, I would know more about you than I had ever dreamed. My son was born less than a year after you had passed away. We knew something wasn’t quite right when he was a few months old. I remember talking to your mom and describing his symptoms to her. Knowing that you were so special, I felt connected to her. It wasn’t long before our worst fears were confirmed, and my son had the same devastating disease that took you. Suddenly, everything I knew of you became everything I knew of SMA. Your mother’s reality became mine.

Brittney Mosher the mighty.2-003

Spinal muscular atrophy is a genetic neuromuscular disease that affects the ability to sit up, walk, talk, breathe and swallow. “One in every 50 Americans is a genetic carrier,” according to Cure SMA. When two carriers have a baby, that baby has a 25 percent chance of having SMA. This disease is considered rare but not for our family. Your mother and father are carriers just like my husband and me. We have a daughter who we now know is a carrier as well. The family refers to you as our angel and my son as our warrior.

In the early diagnosis of my son, no one I personally knew understood what I was going through like your mother. I asked her raw questions and I know it brought up painful memories. A world she thought she would never see again was in front of her. You fought hard but your battle was short. As your mother continues to learn to live without you, without SMA, I learn to live with it. I’ve become integrated into the SMA world for almost two years now.

If it weren’t for you I wouldn’t have known our fate so soon. Because of you, I was able to prepare, accept and fight for my son. You have been my light, and your mother has been my guide. I think of you every day as I care for my son, as your mother cared for you. I miss you and wish I would have known you better. I wish you could have met my son. I wish you could be here so we could fight our unfortunate genes together.

In memory of Alexis Hazel Richardson (7/22/12 — 12/8/12).

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Kenneth Cole Posts Controversial Billboard About Guns and Mental Illness

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Early last week, fashion designer Kenneth Cole tweeted a message about gun reform, and some mental health advocates are outraged.

“Over 40 million Americans suffer from mental illness,” the billboard message reads. “Some can access care…all can access guns.”

Advocates say this perpetuates the stereotype that people with mental illness are violent.

“We’re sick and tired of the stigma associated with our illness,” Dolores Sanchez, mental health advocate and founder of the website Mental Health Justice told The Mighty. “If they’re trying to send the message that we want more accessibility to mental health care, this is a warped way of promoting it.”

In a blog post featured on her website, Sanchez called the billboard a “sensationalized portrayal” and quoted Dr. Jeffrey Swanson, a professor in psychiatry and behavioral sciences at Duke University School of Medicine, who said, “If we were able to magically cure schizophrenia, bipolar disorder and major depression, that would be wonderful, but overall violence would go down by only about four percent.” Ultimately, Sanchez wants the billboard to be taken down and for Cole to issue an apology to the 40 million Americans who live with mental illness.

The Brady Campaign, a non-profit that advocates for gun reform, retweeted Cole’s billboard. Brendan Kelly, a representative from the Brady Campaign, said by promoting the billboard, they only meant to reiterate the beliefs of their campaign.

“[The decision to retweet] was simply a reflection of our firm belief that mental health care should be more readily accessible than guns, not to shift any blame to mental health,” he told The Mighty in an email.

But Leo Briones, communications director for Mental Health Justice, told The Mighty this message is like any other subtle, discriminatory act.

“What you’re insinuating is that there are 40 million suffering from mental illness, and if they get a gun they’re going to hurt you,” he said. “It’s an outrage.”

Briones pointed out someone with a mental illness is more likely to be a victim than a perpetrator of violence. He also criticized the nature of the message — a billboard is meant to get people’s attention, fast. No matter Cole’s intent, simplifying an issue and targeting a population of people to get an emotional response is socially irresponsible, Briones said.

The next day, Cole responded to accusations that his message stigmatized those with mentally illness, taking to Twitter to defend his ad.

His message reads, “This ad not meant to further stigmatize those suffering from mental illness community in need and already under-served.”

Creating an environment where people can talk about mental illness without shame, says Sanchez, is a more productive way to start the conversation about gun control and mental illness.

“We’re starving for good care, and there’s a real need and an appetite for a discussion,” she said. “But when you start that discourse with stereotypical, illogical and misleading connections, there’s no way it’s really helping people.”

Sanchez encourages others to reach out to Kenneth Cole, by contacting his organization and joining the already established boycott movement, #‎BoycottKennethCole‬. She’s also asking the Brady Foundation to disavow themselves from the billboard.

What do you think? Tell us in the comments below. 

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10 Things I Wish I Could Tell My Childhood Self About Cerebral Palsy

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Now that I’m an adult and am a little bit more mature, I look back on my life and wish there were some things I would have known or done as a child growing up with cerebral palsy (CP). So here are 10 things I wish I could tell my childhood self:

1. It will all be worth it.

All of the surgeries, the pain, hospital stays and doctors’ visits: It’s all going to be worth it. You’re going to benefit from all of this in more ways than you can think about right now. You need to look towards the future and understand your life will be so much better because of what you’re dealing with right now.

Karina Siriano the mighty.3-001
My childhood self.

2. Don’t be afraid to go after what you want.

You have so many dreams and big ideas. Don’t lose sight of them and go for it! Otherwise, you’ll look back and wish you had acted on those dreams earlier.

3. Don’t limit yourself.

Just because you have CP doesn’t mean you should limit yourself. Start getting that into your head now, otherwise you’re going to miss out on some pretty awesome stuff in life. And that will be nobody’s fault but your own.

4. Don’t be ashamed or embarrassed about who you are.

Yes, you have CP. So what? Be yourself. Do what you love and don’t apologize for who you are.

5. Learn to be approachable.

Sometimes people are going to view you differently at first. That’s not fair, I know. But that’s just how it’s going to be. So you need to learn to be approachable. Don’t seem standoffish because you are offended by the way people perceive you. Instead, smile and be friendly. It’s going to make such a difference.

6. You’re not less of a person.

Just because you have CP, that doesn’t make you less of a person. You’re just as important as everybody else.

7. It’s OK to laugh at yourself.

You’re going to fall. A lot. You will trip. You will stumble. In crowds, in hallways, in the middle of the school courtyard (where everyone can see). It’s going to be a pretty normal occurrence in your life. You can laugh about it. It’s OK. Sometimes, when you think about it, some of your “incidents” are going to be pretty hilarious.

Karina Siriano the mighty.2-001
Me as an adult.

8. Stand up for yourself and be an advocate for others.

There will be times when people are going to openly gawk. They’ll be rude and make snide comments. Don’t let them get away with making you feel bad about yourself. Stand up for yourself and be proud of the person you are. Be an advocate for others, too. You are in a pretty important situation. You have the ability to be an advocate for those who might not be able to be one for themselves. So stand up for them, too, because you can.

9. Don’t take your life for granted.

It may not seem like it now because you’re just a little kid and can’t really comprehend why you have to go through the things you do. But you’re so incredibly lucky and blessed to have the life that you do. You have a disability, yes, but things could have been so much worse. Don’t take this life you’ve been given for granted. You’ve been given it for a reason. So go out and live your life to the fullest.

10. And lastly, love yourself.

You are different, but you are beautifully different. Remind yourself of that now so that you’re not still dealing with self-esteem issues when you’re an adult. You are loved and you are important. Never forget that.

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