10 Things I Wish My Parents Knew While Raising a Child With Special Needs

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Learning how to live with cerebral palsy and finding my perfect place in the world turned out to be quite an adventure for not just me, but for my parents as well. Now that I’m older, I thought about the 10 things I wish my parents knew while raising a child with special needs.

1. You are the perfect parents for me.

I know you didn’t sign up for a kid like me. I also know you sometimes think you can’t face what it takes to raise me. I want you to know that this isn’t true. I believe I chose you. Whatever you need to learn, you will learn. The strength you think you need will come from somewhere. The people you need to meet will show up when you need them.

2. This is the perfect life for me.

My life is a very special one. I believe I will impact the world in a unique and wonderful way. Remember this when your heart is breaking because you want a path for me that is so much easier than this one.

3. I need you to find your own spiritual path.

The road we’re on is not an easy one. To be successful, you’ll need all the spiritual strength you can muster for the tough days. You’ll need to help me when my spiritual strength is out the window. Often, you will see signs of my determination and be amazed by it. That’s not enough. You’ll have to find your own answers. I’m depending on you for it.

4. However you feel about me is OK.

Sometimes you’ll feel tired and helpless, and it will seem like you won’t be able to provide care for me for one more day. Sometimes you’ll be mad because there seems to be no escaping me. That’s OK. There is no way you could take care of me without having those days.

Sometimes you may watch people look at me and be a bit embarrassed that I’m not doing better. That does not make you a bad parent. It just means you’re human.

Know that when you face many of these days in a row, it’s time for you to get somebody else to take care of me, just long enough for you to regenerate yourself. It’s always important to let people help you. I’m depending on you to do whatever you need to do to take care of yourself.

5. However I feel about my disability is OK.

Some days you’ll be amazed at how content I am, and you’ll wonder how in the world I do it. Treasure those days. Some days I will be discouraged, some days I will be mad and some days I will even feel really sorry for myself. Don’t panic. I’ll come back around again. If you let me express these unattractive feelings, they have much less power. Even typical folks feel sorry for themselves sometimes.

6. Let me try things I want to try even if you’re sure I’ll fail.

I know you want to protect me — that’s your job, I’m your child. But I need you to understand my survival is always going to depend on my determination. Part of my own process is to figure out what my limitations really are. Sometimes I may want to try to do things that seem impossible to you. Please encourage me anyway. It is the willingness to try that is important — success is a bonus. Know that if I fail, I’ll get over it.

7. Don’t worry about my whole life today.

You’ll worry about how my life will turn out. You will lose hours of sleep trying to figure out how I will survive in the world after you are gone. This isn’t helpful to me. Just help me focus on today. The more you can focus on whatever we have to face today, the more you will be helping me develop the skills I will need when it is time for me to get along without you.

8. Sometimes people will be mean to me or scared of me. I expect you to stick up for me but, I don’t expect you to change the world.

There are a lot of really wonderful people in the world. You and I will meet many of them. But there will also be people who will be afraid of me or not treat me fairly. They’ll assume things about me that aren’t true. They may even assume things about you that aren’t true. I expect you to speak up for me when you can. But I also need for you to be able to let it go. It won’t help me if you’re mad and defensive all the time. If you are, there are people who may not want to help me just because it’s too hard for them to deal with you.

9. Finding good doctors and professionals is important, but you know me better than they do. I expect you to trust your own instincts about what is good for me.

The doctors and therapists who work with me are going to be very important for the quality of my life. Some of them will be amazing and others won’t be.  Often, it will be up to you to decide which is which. Listen to them and know that what they say is important, but also remember you know me best. If something they suggest doesn’t feel right to you, listen to that small voice in your head and speak up.

10. I really hope we can laugh.

I believe laughing was probably God’s best idea. It will be the one thing that can bring joy to our lives the quickest. If I get stuck in a mud puddle, it’s probably funny. If you’re lifting me and we both fall on the floor in a heap, that’s probably funny, too. A good joke is worth taking the time to laugh at. Help me not get so caught up in the serious problems we face every day to forget about laughing.

The author Sally Ross Brown

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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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We Thought the Diner’s Patrons Were Judging Us Until the Waitress Said This

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Everyone is looking at us.

That’s the thought I had as we sat down at the roadside diner where we stopped for a quick bite on our way to the beach. We live just outside of Atlanta, in a very diverse area, and I never think twice about the glances that are inevitably directed our way when we take our three kids out in public. Our youngest daughter, Julia, has a severe form of cerebral palsy that has left her nonverbal, nonmobile and unable to eat by mouth. I never feel uncomfortable on my home turf when we’re out and about with her.

This felt different. We were in a rural area in the middle of Georgia, and I had the feeling that most of these folks had never seen a G-tube in their lives. A well-dressed couple seated two booths away could hardly take their eyes off us as I unpacked her feeding pump and my husband started to fill the large syringes that contained her specially blended diet. Another middle-aged man, wearing a shirt with a large patch that seemed to indicate he works in a service station of some kind or another, blatantly stared while he waited for his to-go order.

Honestly, I have never felt so uncomfortable before. Julia is the youngest of three kids, so we’ve always taken her everywhere with us. I’ve always been determined to show, through our actions and her sweet, full-bodied smiles, that she’s a blessing and not a curse to our family. But with every head flop, spit up or beep of the feeding tube, I felt judged.

Eager to get out of there, we asked the waitress for our bill. With a shy smile and a glance around the restaurant, she told us that the gentleman that I thought was silently judging us had actually paid our tab. With a tear in my eye, I started to pack up our things so we could hit the road. As we were getting ready to leave, the couple from the booth came over and said, “I just want you to know that you have a beautiful family. I can tell how much you love those kids.”

As it turns out, everyone really was looking at us, but not for the reasons I had thought. While they were all certainly curious about some of Julia’s differences, what they were seeing is a family who loves their children, challenges and all.

The next time I notice someone’s gaze lingering a little more than I might normally be comfortable with, I’ll remind myself of this day. I’ll choose to believe folks are seeing the best in our family instead of imagining the worst. And I’ll remember the way those sweet strangers took the time to make our day a little brighter.

Kelly Gouteix the mighty.3-001

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How This Teen With Cerebral Palsy Made Sports History Without Joining a Team

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Nathan Mattick has always loved soccer.

The 19-year-old from Cheltenham, England, dreamed of one day playing on a team, but because he has cerebral palsy and uses a wheelchair, playing for one of England’s club teams wasn’t possible, according to The BBC.

So, Mattick set out to get involved with his favorite sport in another way — he decided to become a soccer referee.

“I looked at the referees [on TV] and I thought, ‘Well, I’m in a wheelchair, but why can’t I do it?‘” Mattick told the BBC in a video.

Mattick’s next step was to contact the sports department at National Star College in Cheltenham, England, where he goes to school. He then got in touch with Gloucestershire Football Association where he completed a course and began training.

Now, Mattick is the first person who uses a wheelchair to become a certified soccer referee in the U.K., Mirror reported. The teen is qualified to officiate both indoor and outdoor games with able-bodied athletes as well as athletes with disabilities.

“My motto is, disabled people can still do exactly what able-bodied people can do, but in a slightly different way,” Mattrick says in the video below from SWNS News in the U.K. “I hope disabled people can get engaged in something they’ve always loved to do. Go ahead with it, you can still do it.”

Learn more about Mattick’s story in the video below.

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He's Nonverbal, Has Limited Mobility. And He Runs His Own Successful Business.

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James Hall, better known as “Monnie” by friends and family, lives with cerebral palsy. The 55-year-old, who communicates nonverbally and has limited use of his hands, started his own business making beautiful wreaths out of mesh netting and craft supplies.

Wreaths solo
Photo courtesy of Brittney Ledford

Hall has always enjoyed working creatively. Before launching his business, he made wreaths as gifts for family and friends. Then, in August 2014, he decided to take his passion a step further. He drew up a business plan with his caregiver, Tanasha Taylor, designed business cards and created products to show people.

Hall and Taylor began promoting his business through his family and friends as well as the employees at Mosaic, the assisted living center in Urbandale, Iowa, where Hall has lived for more than a decade.

Wreaths with Tanasha
Hall with Tanasha Taylor, his caregiver and business associate. Photo courtesy of Brittney Ledford

One year later, Hall is involved in every aspect of his business, including shopping for supplies, making the products, and, after ensuring everything meets his standards, distributing them. He makes the wreathes on his own, with Taylor helping him on the details he’s unable to do himself. He recently developed a professional website, Monnie’s Wreaths, which he hopes will help him to eventually expand his business all over the country.

“My dream is to be on ‘The Ellen DeGeneres Show‘ and show people there’s [no reason] you can’t achieve your goals,” Hall told The Mighty in an email.

Wreath booth
Hall at his first public booth in Wes Des Moines, Iowa. Photo courtesy of Brittney Ledford

More than anything, Hall hopes his wreath business will help people to focus on what he can do rather than on what he can’t. He hopes his story inspires other people with disabilities to feel similarly about themselves.

“Don’t focus on your disabilities — you have plenty of abilities!” Hall, who’s also the chairman of Mosaic’s self-advocacy group, told The Mighty. “I believe everyone should be an advocate for themselves, whether they have a disability or not.”

Take a look at some of Monnie’s wreath designs below: 

BurlapSpring

Christmas

Halloween

StPattys

Valentines

Learn more about Hall’s story and his wreath business in the video below.

Wreath photos courtesy of Monnie’s Wreaths.

To see more of Monnie’s wreaths and learn how you can purchase one, visit his website.

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To the Waitress Who Stepped Out Of Her Comfort Zone for My Son

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Dear Kira,

I don’t know you and you don’t know me, but today you affected my life.

It was just another Thursday night, soccer practice for my oldest daughter. I was running late (which seems to be the story of my life), and in the rush to get all three kids buckled into the car, I left my son’s wheelchair in the garage at home. I realized it halfway to the soccer field but wasn’t concerned. I was planning on going back home for dinner after dropping off my daughter.

But luck would have it that on the way to practice, my 4-year-old announced she had to go to the bathroom, “bad.” Oh that Charlotte, she always waits until the last minute, I guess like someone else I know.

I dropped off my soccer player and went to Skyline (a Cincinnati chili chain). I decided we’d have dinner there so my daughter could use the restroom.

With my 6-year-old son on my hip and my 4-year-old in tandem, we went inside. I couldn’t bring my little man into the bathroom with us because I didn’t want to put him on the floor. Instead, I set him in a booth where he would be in my view. I stood outside the bathroom with the door propped open so I could keep watch on her and him at the same time. I kept telling her to hurry because I was afraid my son would try getting down on the floor, his favorite place to lay. Since I needed to get back to him, I didn’t wash my hands, nor my daughter’s.

When I asked if you had hand sanitizer, you toured the place but couldn’t find any. So then you stepped out of your comfort zone and offered to do something most people wouldn’t do.

“I’ll sit with him while you both go wash your hands.”

I had to take a second to make sure of what I really heard before joyfully accepting your invitation. I knew this was likely a once-in-a-lifetime experience: a stranger in a restaurant offering to sit alone with my son.

A waitress holding hands with a boy who has cerebral palsy.

You could see he couldn’t hold his head up, that his hands turned in from cerebral palsy. You were able to tell he couldn’t talk and expected he might even drool. You offered anyway. And even though we were gone for less than a minute, you took that time to hold his hand and talk to him knowing he couldn’t talk back. For a minute you felt what it was like to be him, what it was like to be me.

Thank you for not being scared, for pushing away any anxiety you might have had. Thank you for treating my son like a little boy instead of a little boy that scared you. Thank you for refreshing my vision and reminding me that empathy is all around, often in the places I would least expect it.

Sincerely,
Jack’s Mom

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. 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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When a Coach Made This Simple Gesture for My Son With Special Needs

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They couldn’t be any more different.

Coach and my son.

Coach spends his afternoons and weekends instructing and developing high school athletes into skilled baseball players. It’s his passion. He spent so much of his own life on the baseball diamond, fueling his own competitive aspirations.

He was really good — so good he even managed at the apex of his career to make it to “the show” with the Cincinnati Reds, as Crash Davis referred to the big leagues in the movie “Bull Durham.”

He works endlessly now with young athletes, honing their skills and cultivating their talents.

Every day he challenges them, pushes them and encourages them with the same competitive fire he brought to his own game.

He’s watched so many of the players go on to further their careers playing baseball in college. That has to be so satisfying to him as a coach.

My son isn’t one of those skilled athletes. My son isn’t even one of those players.

Cerebral palsy, seizures and autism have denied my son any opportunity life may have had for him in that arena. I’ve long come to terms with that fact. I’ve laid down my fatherly dreams of playing catch with my son, shooting hoops in the driveway with him or even swinging a bat together.

Those were exceedingly hard dreams to let go of as a father. A father who spent his own childhood always in the gym or on the field, playing some form of sports. A father who played basketball for his own father in high school.

I still remember when I earned my first varsity letter jacket. I don’t think I took it off for the first year. I remember being measured for my first high school uniform and proudly declaring I wanted number 22.

My son will never have those same experiences. He doesn’t care. He doesn’t feel any remorse or longing whatsoever. Only his dad does.

Everyone in our little town knows the coach they see in the afternoons and on weekends.

Very few people know the coach I see from 8 to 3 every school day.

Very few people know that Coach is one of my son’s classroom assistants in his comprehensive development class. He’s the one primarily working with my son all day long.

Coach meets us at the car in the mornings to assist us in getting our son into school with his mobility issues. He works with him throughout the day, assisting him hand-over-hand with every task, every function and every aspect of his day. He then helps us get my son back to the car and loaded up at the end of the day.

He’s my son’s eyes, his hands, his feet, and rest assured, he has his back.

I don’t worry about my son too much when he’s at school because Coach watches out for him.

What a contrast it must be, working with my mobility-impaired, cognitively challenged son during the day, and then working with skilled young athletes in the afternoons.

Recently, we all read about the high school student with Down syndrome and autism who was forced to quit wearing the varsity letter jacket that his parents had purchased for him. “He’s not on the team,” they cried. “He shouldn’t get to wear the jacket.”

I understand both sides of the argument. But as a special needs dad, my heart broke for that young man and his family.

I was reminded of that this very week.

As Coach walked my son out to the waiting car, he leaned in and simply said, “My boy needs a shirt.”

“My boy.” (Oh, how I love that!)

Courtesy of Coach, my son came home from school the next day with his own Cavalier baseball T-shirt.

No, it’s not a uniform. But we don’t need uniforms to show we’re on the same team.

A simple gesture but a powerful statement. A gift that is priceless to me.

How do you put a price on dignity, significance, character and honor?

Sometimes the best lessons a coach can teach don’t involve words. Sometimes, a T-shirt will suffice.

We’re all on the same team.

Life lessons for all of us, courtesy of Coach.

Jeff Davidson the mighty.1-001

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