Q&A: What's important for parents to understand?

I think that it’s accepting that life is going to be very different.  It’s that the child’s hopes and dreams are going to have to be readjusted.  That your hopes and dreams for the child are going to have to be adjusted.  I think you become a lot more grateful for what you have.  That’s not a conscious decision; I think that’s what kind of happens, at least in my case.  It felt like there was suddenly this re-shifting of priorities, and recognition that regardless of how obnoxious the person talking to you is, or how silly something can be, all that doesn’t matter.  Whatever it is, how wonderful it is that this child is still alive, and we’re still able to get on with our lives.    

I think that the most important thing would be, dealing with anyone with a spinal-cord injury, is to, you know, give them their space. Give them your support when they need it or when they ask for it, but always turn around and encourage it. A lot times, people—and I had this growing up—but a lot of people always say: "you can't do this, or you can't do that or you shouldn't do this." And, you know, you kind of get tired of hearing people tell you, you can't do something. And then, unfortunately, you may do something stupid, and you need to be told "you can't do that," but you know, you got to be able to, you know, support the individual, but you have to at least give them the encouragement to try.

Well, I think the biggest thing is to never get frustrated.  There’re going to be times when a person is going to pretty much yell and scream, and the parents are going to be like, “What did I do?  I didn’t do anything wrong.”  And, it’s most likely not directly at them, but it’s because they’re there in the room and they’re the closest people to them, so it’s going to happen.  Just not get frustrated and take a five-minute break, and come back, and usually the person’s better.  

At the beginning, everyone, I don't want to say they didn't think I could do it, but they wanted to help so bad, because it's like, "Oh, I see you, and you're having such a difficult time, I want to do it for you." And, I was the type of person that, I was like, "Ok, well let me try it first, let me try it, and if I have a hard time, then you catch me." And so, that's how we played it. I tried and I did what I had to do , and in the event that I didn't make it, or I didn't complete that, my family was there to help me. So, that was my main support behind me moving forward, and being able to complete therapy, and complete, you know, so many things that I overcame. So, I mean, family support was one of the main things.

They allowed me to be me. They, they took care of me when, physically when I needed something, but they didn't enable me. By not enabling me, like not doing everything for me, they allowed me to win my independence a whole lot quicker than I thought it would happen. So they, they let me be me, and, they, they saw normal kid.

It's easy for a parent to want to take them under their wing and protect them as much they can, and do everything they can for them, and make sure they're not hurt or have any problems. When really they need to have the experiences, they need to know that they can do things for themselves and they can't depend on that mom is going to be there all the time, or dad is going to be there all the time. I see a lot with my own experiences, you know with my own personal experience, and with other people as well that I've met that have been injured, and if their parents are too coddling of them, they don't adapt well, they don't become independent. They get used to that lifestyle and the parent gets used to it as well, and a cycle, and it ever ends.

The parents’ lives are disrupted but you’re really fighting for your child. I mean, all their hopes and ambitions are just taken away in a split second and they don’t know what’s going to happen to them. So, you’ve got to be there to support them and make sure that you encourage them. You know, “there’s still hope here. We’ve just got to find what you can do and how you can improve,” that “life isn’t over.” And maybe the child probably does want to give up on life most of the time you know, particularly at a certain age like he was. But you’ve got to find something that will drive them, that they can get interested in again. And you just can’t give up

They just really need to know that it will be okay. Whether or not, one way or the other, if the kid starts walking again or he can't even move a limb, it will be fine. You know, they just need to know that it's going to be okay.

They have to look beyond what’s wrong.  And you have to start looking at the potential—“What are we going to do about his or her life?”  Not, “What are we going to do with her or him?”—“What are we going to do with his or her life?”  Start thinking forward.  You know, “How do I get them in my house?”  It’s going to be okay.  The family, you know, I talk to folks, again, this becomes ethnic or cultural, I talk to people and they’re moms, and the father, they’re completely destroyed.  Because the person in the bedside, it was part of their unit that’s probably going to be one of the providers in their household, that was going to help the family move on, and get the American dream.  Now that person is a burden.  Unfortunately, that does fall on people’s thoughts that, “Wow, now we have to take care of him or her.  We’re busy man; we’ve got nine to five, we’re at the factory.”  So I got to tell them, “Listen, if we get this person to understand that him or her can be independent, with whatever limited function we have.”  You know, some people need more assistance than others, so I can’t say to a person with paraplegia or a person with quadriplegia—tetraplegia—life’s the same; it’s different.   So, if I need to tell the family that you have to have the person become independent so that you can get on with your lives.  

I’ve learned as a mom, you try to do too much for them, and you have to learn to back off and let them do it themselves.  That’s a battle that you sometimes want to make it easy for them, and they say, “No, Mom, I can do it myself.”  You have to let him, even if he’s going to fall or if he’s going fail, you have to give them that independence.  It’s just like a small child learning how to do something, you have to kind of back off. 

My parents understand that I just wanted to be independent.  That I wanted to do things myself and when I was refusing to let them help me, it wasn’t  because I didn’t want them to help me, it was because I just wanted to do it myself.  And, I think they all need to understand that there’s a lot going on; it’s really overwhelming.  And, if their child is lashing out at them, it’s because they know that their parents aren’t probably going to leave them.  So, just to be understanding and know that they’re probably  going to take the brunt of the frustration, and anything else that’s going on, but that it wouldn’t be that way if they weren’t close to their child.

It was important for me to let my parents know that this isn’t going to beat me.  I’m going to be okay, I’m going to come up on top, I’m going to find a way to pick up and move on in life, and continue for you to be proud of what I do.

You have to let them make their own mistakes.  Like the first time my son fell.  I was just a basket case, and he was like, “Oh, I fell, that’s over with now.  I can move on.”  So you have to let them make their own mistakes and hope they learn from their mistakes.

I think when your child is catastrophically injured, it’s so important to remember that that person, who was there yesterday, is in there today.  That was the thing that we held onto.   And, until you can reach her or him and really be able to interact with them again, it’s just important to remember that they are the person that you knew, and to look for that person.

When a parent is dealing with a young, I think a young teenage, even younger, early twenties you know, is that they’re already going through so much—changes in their body’s hormones, curious about what their future holds—is to be encouraging. I mean, I don’t know what I would’ve done had my parents been ugly, or because it is stressful, it is stressful. I can’t imagine what they went through. But I would want parents to just constantly, and you might have to fake it sometimes, you might have to keep it all together, and leave and bawl your eyes out. But not seeing my mom weak and my dad weak was huge for me. They were like a rock and they were just so supportive. Anything that I wanted to do, they were like, “yes, let’s do it.” They were like cheering me on and I needed that, I needed them to push me.

Well, with my mother, she was primary caregiver initially after my accident.  You know, I can remember being in the hospital, and I was afraid to breathe until I would see her, just so unbelievably needy.  It was hard on both of us, I needed to break free, I needed to start developing my own routine, and being independent without her.  As a mother, I think she wanted do everything and be there for me to try and ease my pain.  And as a young woman, wanting to make it in this life, even with a disability, I needed to feel my own way.  It was hard on both sides.  I didn’t want to have to be a 22-year-old, or 23-year-old married woman needing her mom so much.  

Know that it's okay to speak up for your family member. And if you feel that something's wrong, to ask more questions and to not just, not just go along with what people are telling you.

Don’t let the disability inhibit their parenting, or the motivation that they would provide to their children.  They still are human beings.  I sometime think parents stop at the disability, and they write their children off.  You can’t write your children off.  If they want to be the President of the United State, guess what, the Oval Office is wheelchair accessible; we can still get there.  If they want to be an actor, guess what, we can still make those things happen.  I think that even if the child doesn’t want to push forward, gently encourage them, gently motivate them.  Encourage them to go to the mall, hang out with their friends, and let them still be normal, because they are.  They’re just sitting down, that’s it.  That’s really the only difference, they’re still the same child that you gave birth to, that you conceived.  They’re just sitting down, and that’s really how you have to look at it.  

I don’t know, my wife seems like she’s braver than me, I don’t know, tougher.  She’s soft, but she’s tougher than me.  I don’t know, I guess we’re protective, and I guess you feel that you didn’t protect them at that time.  You know, you let them down.  It’s not true, but I guess you have that feeling, you know, that, “I should have been there to protect him, that it didn’t happen,” but it happened.  I think that’s probably why fathers are the hardest.  When the kids are hurt, they always came to dad.  If they were hurt, physically hurt—if there’s something bothering them, then they went to mom—but physically hurt, they came to dad.  I would put the bandages on, clean the blood off.  So, I think that’s what it is, you just feel you haven’t done a protecting job, which isn’t true, but that’s what you feel I think.

I think the natural inclination is to hold them tighter, to want to protect them because—and I've even had this conversation with both my parents—is that they feel that in some ways, that they've failed, you know that they didn't protect me, that they should have taken better care or you know whatever. A lot of it, I think that's a normal reaction, but to overcome that and say, "I have to let them live their life, I have to let them make mistakes, I have to let them do things that I don't agree with," because that's what you do when you're a good parent, and I think that's even more true when it's a person with a disability.