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.
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