So here we go….
Bleeding Ink is gonna tell you how to raise your kids.
Hee Hee. Just kidding. 🙂
I’m just going to impart some knowledge on what I know about growing up as a child with Spina Bifida. So I guess this entry is geared toward those mothers and fathers of children with special needs, but hopefully all parents can take even a little something from anything I write, regardless of whether or not your child was born with a disability.
So…..parents of children with special needs……I want to share with you something important. Stuff I always tell new parents of young ones with SB. Stuff I believe they need to hear. Ready? Here goes: Your attitude, especially early on, will determine your child’s attitude. Children are likely to live up to what you as parents think of them. If you think your child is not capable of doing anything, neither will they. If you think they can’t succeed, or that they will do nothing with their lives, so will they.
On the other hand, if you believe that your child has potential, that your child has a future, that your child can do whatever he or she wants to do, even if it means they may need some extra assistance or need to find new and different ways to do things, then they will believe it, too. They will grow up confident young men and women and they won’t let anything stand in their way.
Sure, it may take them awhile longer to accomplish things; it may be that they will reach a goal in a different way than other boys and girls. But if you believe in them, they will believe in themselves. Your attitude early on is the single most important factor in determining what they think of themselves and what they will believe they are capable of doing.
And your attitude……needs to allow them to fail.
I have no doubt that all the parents reading this love their children. I have no doubt that you all want nothing but the best for your kids. You all want to protect your kids from pain, from sadness, from disappointment. Just like every other loving parent out there, you don’t want anything bad to happen to your kids.
However, I’ve seen too many parents, particularly in the disability community, “over” protecting their kids. It’s a hard thing for any parent of any child, with a disability or not. You question, “When do I let go?” “How much should I let go?” “What if my child fails?” “What if my child tries something and finds disappointment?”
It’s hard, but I’m here to tell you that teaching your child how to be self-sufficient and as independent as possible is the best thing you can do. Obviously, as with every other kid on the planet, kids with disabilities also are different from one another. And, physically, some of our kids may not be able to do as much as others. That’s okay. Allow them to do as much as they can do. It will not only help their self-esteem when they can do things on their own, but it teaches them responsibility.
For example, I don’t know, let them help you clean the kitchen when they are younger. Maybe they can set up the dinner table. Show them how to clean their rooms, then after a while, let them do it themselves. You will be giving them skills for life. Later on when they reach adulthood, they will be better able to take care of themselves.
I understand that for some of our kids, they will always need some kind of care. That’s okay. Some of our kids will do just fine as adults and on their own. But some will need more help. Into adulthood, some may always need assistance of some kind. That’s fine.
That’s when I think of a phrase I first heard in 2003 from a doctor (with SB I might add) in Texas at the first SB national conference I went to…….he said……”interdependent but autonomous”. And I loved it.
I believe that no one is truly “independent”. Nobody. Able bodied or not. No one is an island and everyone needs somebody for something. We are all “inter”dependent. For example when you go and buy a car, you ask for advice, you check with friends, you do your research. You depend on others for help. You go and buy your first home. God I hope you ask advice and help on that! At least with the ins and outs of closing on a home and escrows and payments and HOA and taxes and all that. Or when you have a doctor’s appointment and you need someone to cover your shift at work, you ask for help. We are all connected. Nobody is truly “independent”. And neither should our kids be. If they need help of any kind, that’s fine, I believe that’s just the human condition.
However, “autonomous” means that even though we may depend on others for some stuff, at the end of the day we need to be responsible for our own actions and our own lives. We can have others help us, but ultimately whatever happens at the end of the day needs to be one’s own choice and one’s own decision.
Or as Judith E. Heumannm, one of the leading disability right’s advocates in the country, so beautifully put it: “Independent Living is not doing things yourself; it is being in control of how things are done.”
So….some of our kids, when they become adults, may need things like a home health care someone or other, coming in helping them with grocery buying or whatever. That’s fine. They can still be autonomous. They are still in control of how things get done.
Parents, I know it’s scary. I know that you don’t want them to get hurt; you don’t want them to suffer. As they get older, you may be afraid of other things as well, but there are always options. When they choose to move out, they may be just fine. All on their own. Just fine. But if they need help, there are always programs that teach them life skills. Voc Rehab and whatnot. And there are hand controls for cars. There are also home health care workers who can come to their homes once a week to help clean up, to help cook, to help buy groceries, or to help assist in whatever medical needs they might require. There are always options.
And for those that don’t leave right at 18 like you’re “supposed to” (I guess), they can still be “interdependent but autonomous”. For some, it means they make their own appointments, do their own cooking, and provide for their own transportation. Some have cars and drive themselves wherever they need to be. They still have independence. They have friends. They do things. Some are taking college courses online. Some do volunteer work that really makes them happy and makes them feel good about themselves.
And anyway, “Independence” doesn’t mean they have to move out at 18 and live alone. But…..damn….it does mean…..jeez…..at the very least it means that if they are physically and mentally able to cath on their own (if the doctor deemed it necessary for them to do so in the first place) then oh my god they should!!
OH MY F*CKING GAWD, there is simply no reason a 14-year-old should not have some kind of outside activities or social life, simply because they don’t know how to cath. F*cking pet peeve of mine to see mom doing stuff like that. Pisses me off and makes me sad like you wouldn’t believe!!
Ok Ink, calm down…..ok um, where was I….oh yeah…….so don’t misunderstand me. When I say, “let your kids be independent,” I don’t mean “Parents, leave them alone”. Unfortunately, I see it happen where a child with disabilities who is becoming an adult wants to be more independent, wants to learn to do more on their own, wants more freedom. The parents are hurt and confused. They spent their life protecting their kids, loving their kids, trying to shield them from pain and disappointment, and now the child is saying, “I want to do things on my own.” But for you, the parent, its scary. Maybe even offensive to hear that. Yes, offensive. “I am so and so’s caretaker, their protector. That’s who I am. That’s my sole purpose in life. They need me.” And I think parents fixate on that identity. So the parents may react with hurt and confusion and say, “Okay, you want to do things on your own? Fine. Do things on your own.” And then they abandon their kids.
Parents, please don’t abandon your kids.
It’s understandable that you would always want to protect them. They were born with these special needs and from the day they were born, you were all they had to protect them from the big mean scary world. Good job, go you, you did a beautiful thing. ❤
But they grow up. And you are not doing them any favors by hanging on to that identity of “protector”. Maybe without that label of “protector and caretaker”, you don’t know who the hell you are….well figure it out! Because they won’t need the same amount of protecting and care that you gave them when they were 2. Let go. But don’t completely abandon them. That’s just mean. Don’t be mean. Find that balance. I don’t know where that balance is, but find it.
You’re their parents, and they love you, and they will always need you. They are just asking for the same thing most young men and women want: more freedom to fly, more freedom to succeed, and yes, the freedom to fail. When they do succeed or when they do fail, don’t abandon them. Be there, cheering them on, encouraging them, helping them.
I feel I should put a disclaimer here. I didn’t grow up being all that independent. I didn’t have a mom who, from day one, let me do as much as I could by myself. I had an overprotective mother.
On the one hand, she would have me talk to the doctors and always make my own appointments. Yes, that was very empowering; yes, that taught me some responsibility.
“Tell them what’s wrong. You talk to them. It’s your body” she’d say.
“Tell them it hurts. A lot,” she would always advise.
So yeah, very independent with my medical care. That was all me basically from the time I was 9.
But, on the other hand, she was afraid of my having new experiences. She was always afraid I would get hurt, always afraid of her little boy experiencing pain or rejection or suffering.
There came a point when I finally let my mom know that I wanted more freedom and more independence. She took a long hard look at me and said, “OK. This is new and scary for me, but you’re right. You can do this.”
Whether it was, “You can go to college,” or “You can meet girls, you can date, you can marry,” (“And you can get divorced.” -2011) (“And you can get remarried.” -2013) she was afraid for me, but she let it happen. AND she was still there for me. She did not go from one extreme to another. She did not go from being overprotective of everything I did, to completely abandoning me. She did it right. Ultimately, she did it right. She was there when needed, and when I seemed to be doing OK on my own, she left me alone.
To this day, my mom is still like that. I see her almost every day (as every good Mexican son should do 🙂 ) and she is still there for me, listening, caring, interested in my life. But the most she ever “does” for me is buy some milk if we run out and she happens to be at the grocery store! She knows that she has given me so much by letting me have my independence.
Some practical stuff my mom taught me was to clean the kitchen, and she taught me to do laundry; my dad taught me how to manage money. They gave me many practical life skills that I needed for the future. I will always need them, I will always love my mom for everything she is, but I am so thankful for the chance to succeed, and yes, to fail, on my own.
The point is, parents, don’t underestimate your kids. Don’t completely abandon them. But don’t underestimate them. Remember that independence and self-sufficiency are two of the greatest gifts you can give your kids. Those skills will help them long after your physical bodies are no longer here to watch over them. Teach them independence and self-sufficiency and you have truly given them the greatest gifts you could ever give.
I love your comment about interdependent but autonomous. We all are interdependent including you and me. ; )
We are friends, we love each other, we help each other but we don’t get in each other’s way. We support each other and tell each other tough things sometimes. You and I were so lucky to have the parents we did. What is that term I’ve heard? Tough love??!! Way to go. mi amigo.
You and I believe in the same things whole heartedly. I have gotten a lot of hate for the article I wrote but I stand by it. I stand by it because of my friends, like you, who have lived it every day. I think I come off to harsh but as one of the other people that commented earlier I am very passionate about this. You know it because you live it, I know it because I live it and we all want to live the best life we possibly can. To do that you need to have as much control over it as you can. You nailed it my friend and it is an important message. I will tell you something your mom and my mom sound a lot alike. She was not overprotective however she put her feelings of fear aside to do what was best for me. To give me the tools and chances to take my life where I wanted it to go. It was hard for her to let go espically when I moved a thousand miles away but with a smile she said “I know you will do great.” After reading your blog and the lashing i am getting over my blog I thank god EVEN MORE for the family I was blessed with. They are truly the biggest factor in how we turn out. They hold more power than the Spina Bifida it is really sad that the large majority don’t know the power they hold. I could have easily went the other way had attitudes been different. I am truly truly fortunate! Oh and you ROCK!!!!!
You what’d be great? Another one of these. Just sayin’. 😉
Wowww! You need to publish your writing. I will buy your book. Your mom must be proud. jijijijiji Love you!
thank you mommy ❤
You articulated perfectly how I feel. It’s great to know that I’m not the only one who thinks this way.
Well… it sure sounds easy doesn’t it? As a mom of a child with a mental disability (speech disability), I spend many many many years trying to find that balance. I know you say that it is difficult, and you’re right – but there are no words to describe a mom’s insatiable desire to keep her child safe and happy.
You become the advocate for that child. I spoke for my daughter; I did for her; I read her expressions, her gestures, her mind (at times). Boy…. it was difficult to let go. Because when she came home with a broken spirit, how did that reflect on me? When she looked at me with tears in her eyes… how did I explain that this was part of the learning curve?
You know what finally did it for me? The school system. It is AMAZING how many times you hear that the system wants your child to live to his/her potential, but undermines that message by making unneccesary allowances that actually restrict growth. I made it very clear that I expected my child to do great things. I used my desire to protect her to *enable* her to make positive changes. I set expectations and goals and damn it – she was going to live up to those if it killed me.
At times, it did… it was hard to watch her fail.
The bottom line is that I agree with *everything* you said. My daughter, now 15, is doing fantastically in high school. After 9 years of struggle, she seems to have “gotten” it, finally. And so do I.
All those parents out there who struggle, remember that you aren’t raising a child, as much as you are preparing for an adult. And ask for help. You deserve it, and so does your child.
Sorry to hijack your comments, but I felt very strongly about this, as well. 🙂
I love this blog. I’ve thought every single thing you wrote. One of my biggest pet peeves with talking to fellow SB’ers is when they aren’t self sufficient. Kudos to you for writing this. Thank you so much.
Very well said. I truly believe that our attitude towards life is perceived so much by our children. I pray that with our encouragement, guidance and positive outlook Evan will do amazing things with his life, and if not, we will always love him just as much.
I am so proud to call you my friend. There are times when I think I know you, and that you can’t surprise me, but then you go and do something like this. I hope the whole world will read it. They need to.