So here we go….
Moosey is gonna tell you how to raise your kids.
Hee Hee. Just kidding. 
Well sorta.
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 a house. God I hope you ask advice and help on that, or it’s gonna suck to be you! 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 FUCKING 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. Fucking pet peeve of mine to see mom doing stuff like that. Pisses me off and makes me sad like you wouldn't believe!!
OK Moose, 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. <3
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.
) 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.
***Jesus Arroyo is 37 year old man with SB myelo, shunted, ambulatory with braces, Chiari II. But that's not the most important thing he wants you to know about him. The most important thing he wants you to know, and in keeping with the theme of his blog entry, is that life happens to everyone. Typical things and SB things. And we have to be prepared for it all. Mentally and emotionally capable to handle whatever life throws at us. Married for more than 10 years, divorced, and recently remarried, he points out that his divorce is the most difficult thing he's ever gone through. Harder than 20 surgeries, more emotionally taxing than the 2 shunt revisions he had this summer in the time span of 6 weeks, after having no problems with his shunt for 17 years. Hundreds of trips to the ER. But something "typical", something that everyone can go through, a divorce was more painful than anything SB related. Something "the normals" go through. So how do you handle that? Or surgeries? Or anything else life throws at you? With emotional strength, maturity, and the experience you got during the times you failed in life. With family, friends, loved ones and support, but also from learning from your failures. And that's what this blog is about. The power to fail.***
~~~You can follow Mr Arroyo's blog at: http://mooseysramblings.wordpress.com/ For more entries just like this one, be sure and click on his Disability Advocacy link on the right. Leave Jesus some love and tell him Dawn sent you!!! ;-)
