Tuesday, January 5, 2016

What I Would Tell Another Parent Who Is Having A Baby With A Birth Defect

The other night we took CJ on his nightly adapted tricycle ride at the park and we met a man named Mark. Mark was born without arms. The cool thing he is that he was playing the electric guitar- with his feet. Mark drives, has had many great jobs, has had girlfriends, been married and was even a single dad to his three kids for several years on top of playing in a band. He drives a car with no adaptive equipment. We talked with him about growing up as a "disabled" kid and he confirmed what we have felt all along- it's about your attitude. If you or your parents think it's no big deal- it won't be to anyone else.

When we parted ways so Mark could charge his amp before another show, I was left with such a feeling of gratitude to God. Gratitude that my son is missing part of his spine. I had an epiphany and I realized what I was so grateful for- the chance to raise a kid who has challenges.

Seriously. It is a privilege and a gift. Yes, it's a challenge. Yes, there are days when I want to pull my hair out. But I believe there is a lesson that God has been trying to teach me through CJ the entire time. Actually, I think it's a lesson CJ was put here to teach the world. And here it is: It's not about the hand you are dealt, it's how you play it.

I know people who have big houses, the use of all their limbs and senses, plenty of food, clean water and clothing and the capability to pursue many good things. And they are miserable. And then I know people who were born with some kind of physical challenge who are happy and fulfilled. I'm ashamed to admit it, but there have been so many times in my life where I feel like I was dealt a raw deal and that I can't move on because of it. But this has been a big year for CJ. He took his first steps. Now, he can do a couple of yards unassisted- after we were told that he would never be able to walk unassisted and that even with assistance he would never do more than a very short distance. I have thought so many things were impossible in my life, but I believed in this one thing. And because we believed it, we were able to make it come to pass.

So after being the parent of a kid with a birth defect for over five years now, here is what I would tell someone who has just found that they are going to have a baby who will be a little different:

Accept it. One of my favorite Dr. Phil-isms is this: "You can't change what you don't acknowledge." This is absolutely the first thing you must do to be an effective parent. I saw parents in the NICU whose babies were in the NICU much longer than needed because they kept trying to avoid learning and demonstrating the skills needed to care for their babies at home. It can be devastating to find out that the things you planned and hoped for your baby won't happen in the way you wanted. (CJ isn't going to be hiking with us any time soon.) But until you acquiesce to the reality that your child is going to be a little different in some way you can't improve on the situation.

I really love the 1991 Disney movie Wild Hearts Can't Be Broken. It's based on the true story of Sonora Webster who was blinded in a horse diving accident and then taught herself to continue to riding and diving with horses. There is a scene in the movie that demonstrates this principle. Sonora tells her fiance Al that her blindness will go away; she just needs some rest or some time. And Al tells her that it is permanent. She can be angry, she can fight it, but none of that will change that it just is.Once she accepts that her blindness is a permanent condition, she's able to work with it and dive again, before that she's just waiting and staying stuck.

There are two books I recommend 110% to anyone who has found out that their baby has a birth defect: How To Stop Worrying and Start Living by Dale Carnegie and The Obstacle Is The Way by Ryan Holiday. (Actually I recommend these to anyone who is breathing and has troubles. And even if you're a ghost they might be helpful too.) If you've just been hit with a diagnosis on your  baby I'd specifically suggest chapters 2 and 9 in How To Stop Worrying and Start Living ("A Magic Formula for Solving Worry Situations" and "Co-operate With The Inevitable") and the chapter called "The Art of Acquiescence" in The Obstacle Is The Way.

Prognosis can be a fluid concept. I think that doctors often don't want to give parents a false sense of hope. So they hit them with the worst thinking they're preparing them to deal with the challenges ahead. In reality, this false despair is just as corrosive.

The reality is that every kid will have different challenges. When CJ was born we were told there was no chance he could walk unassisted or that he could relieve his own bladder or bowels. The specialists were wrong on all counts. If your baby has just had a diagnosis for something like spina bifida or Down Syndrome- especially a prenatal diagnosis- please take a page from Hitchhiker's Guide to the Galaxy  and DON'T PANIC. You will probably not know the full extent of your baby's function until he gets older. You also run the risk of assuming your child will have a problem or a severe form of a condition that he or she may not have and then creating that reality. I have seen kids with myelomeningocele who are running around like crazy but have multiple shunt revisions, adults with myelomeningocele who use mobility devices and have had their shunts removed because their bodies no longer use them, kids who need catheterization, kids who don't and on and on and on. It really depends on the individual.

I will forever be grateful that the first doctor I talked to after CJ was born was positive with us. I asked if my baby would have brain damage- I wanted to know so I could be prepared for that. He told me that CJ might have hydrocephalus and might need a device called a shunt to control fluid build-up in the brain, but if the hydrocephalus was under control there was absolutely no reason CJ couldn't be valedictorian of his graduating class. Nice! Honest answer, but focusing on ability- not disability.

Here is what I wish doctors and specialists would tell parents when giving them a diagnosis- especially a prenatal diagnosis: "Your baby has X Diagnosis. These are some of the conditions we often see with this diagnosis. Your baby could have several of these conditions or only a few. We need to watch and be aware of these things, but at this point we can't predict what particular abilities and limitations your baby will have in life. We need to focus on maximizing whatever abilities your child has." When you're looking at your baby, remember Will Smith's words in the movie Hitch: "You is a very fluid concept right now."

This is not a "parenting hall pass". You still have to parent your kid. All kids need discipline, you may have to adapt things a bit for your child's particular needs and capabilities, but they still need discipline. We still have to teach CJ to be polite, to be nice to his brother and that he can't everything he wants when he wants it. Another benefit is that people are charmed by a child in a walker with good manners. Do not get sucked into the trap of "Oh, she's been through so much, how can we say 'no' or punish her?" Otherwise, you may end up with this scenario dramatized in The Miracle Worker:

Oh, and you're not off the hook for talking to your kid about sex either. Depending on your child's intellectual level and physical condition you may need to make some adaptations, but they'll need to some things- especially about appropriate and inappropriate touches. (All kids need to know that for their protection.) With CJ, things are pretty basic right because he's only five. New babies provide a great opportunity to talk about some introductory aspects of human development. 

But we know that we'll have to have some discussions tailored to his needs as he gets a little older since fertility impairment and some other issues might be part of his condition. That's OK. We want CJ to have great friendships and later great dating relationships. We want him to find that special girl and get married and start a family. We think the best way to make that happen is for him to have frank, honest knowledge about human sexuality, relationships and his condition and understand the possibilities that are open to him.

Your kid still needs exercise, healthy food, hobbies/interests. One of the things I kept seeing in the information about myelomeningocele is how kids with it are at a higher risk for obesity. Based on my experience, I think this has a lot to do with parents and specialists who don't think the child can exercise. We are strong believers in the power of exercise to keep people healthy and wear children out. When CJ got his first walker, we made it a priority to take him out for exercise every day. As his endurance increased, we've had to make sure we get him out for longer or more intense walking or tricycling. We started taking him to the zoo and he has done some serious mileage there. Just like we need exercise every day, he does too. He's better behaved and goes to sleep more easily. And he needs healthy food just like any other kid. I think a good diet and plenty of exercise are part of the reason he is in such good health. He rarely gets sick and is at a normal weight for a kid his age.

As he gets older, we want him to try out some different activities. The really great thing is we live in an amazing time where there are more options available than ever before for adapted recreation. Wheelchair rugby, sledge hockey, adapted basketball, you name it. I once saw a YouTube video (unfortunately, I can't for the life of me find the link) which showed a man in a wheelchair who was doing martial arts and showed how he could disarm a standing opponent who had a knife. Some ballroom dance competitions even have wheelchair dance events. There are people hiking with prosthetic legs and paraplegics who go swimming. A new trend I've been seeing is dance studios that offer special needs dance classes for children with intellectual delays. 

Some of history's greatest people have had some kind of disability. Stephen Hawking's mind is sharp despite his physical limitations from ALS (Lou Gehrig's Disease). Franklin Roosevelt was paralyzed after developing Guillain-Barre Syndrome and went on to become the President of the United States for four terms.  Many historians say that he would not have been the leader he was if he hadn't had the challenges of losing the use of his legs. (I've always loved the irony that Hitler considered disabled people inferior and yet a paraplegic man was one of the instrumental figures in kicking Hitler's @$$.) James Earl Jones had a speech impediment and didn't talk for several years as a child. Even with limitations, we're all capable of a lot. I can't wait to see what CJ is going to do next. And other kids like him.

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