One of your girlfriend's closest "friends" hasn't visited in awhile. Luckily, you were hoping for the absence of this acquaintance. You and your girlfriend set up a meeting with the doctor hoping for some good news and... he has some! You're pregnant. Congratulations! You schedule routine ultrasounds and checkups, just to make sure everything is copacetic, through those many months of your significant other holding a human being inside of her. You both read every baby book there is-- What to Expect When You're Expecting seems like the most efficient one. You buy strollers, diapers, changing tables, and playpens etc. You begin constructing the baby nursery and decorating it with clown wallpaper and sports memorabilia, in an attempt to brainwash your child into one day giving sports corporations money, based on their belief that they're part of the team. You even start picturing your kid as the next Wayne Gretzky or Babe Ruth, after all, you were quite the athlete as a teenager. Then one day, you get a call from your doctor. He wants to meet with both of you. You get down to the doctor's office, he calls you in and sits you down, and begins to tell you that something is wrong.
His medical team was looking at the latest ultrasound and found something amiss. To be sure, they need to do another ultrasound. You sit in painstaking silence as you hold on tight to your wife's hand. The nurse tries to make small talk in an attempt to soothe the situation but, it's no use. Neither of you can talk, you can only worry about what's wrong. Fifteen minutes later, as you're waiting to be called back into the doctor's office, both of you are silently panicking. When he finally does call you both back in, he wastes no time. He tells you that, your baby will be born with a disability. The minute you hear the word "disability", you hear nothing else. In that moment, you're staring blankly at the doctor, glancing over at your spouse, and trying not to let your emotions betray you. But they do. A few tears begin to drop. You and your spouse begin to think but don't dare to say it:"Why us? What did we do to deserve this? Where did we go wrong?
When you leave the doctors office these questions and several others are still racing through your mind, through the next few days and popping up through the next nine months. For a few weeks, you ignore people's phone calls. How are you going to tell your friends and family?
Eventually, you and your spouse decide not to be beaten. Enough is enough. My child has a disability, so what? You call people back. You gather all the strength you can and you push through the next nine months, side-by-side. You both falter in your strength at one point or another but you use each other as a crutch. Nine months later you have given to the world the greatest achievement the average person can, a new life.
So, what is the point of me mentioning this struggle? What piece of advice could I possibly give without having a disabled child of my own? It's simple really, I was that child. My parents and every parent of a child with a disability would have never dreamed that they'd be put in that position.
However, they were.
So, how'd they get through it? They decided that yes, their child was going to be different. Their kid would grow up and face obstacles every day of their lives and they would face them too. However, they had to decide that their child deserved anything and everything that able-bodied children would have. That's what parenthood is all about after all, right? Giving your child everything that you never had? Yes, there will be challenges along the way but that's all they'll ever be, challenges. We are all challenged every day. Your child will just have slightly bigger and more frequent challenges. Remember: The child has a disability, THE DISABILITY DOES NOT HAVE YOUR CHILD.
I believe that what's most daunting to new parents of children with disabilities is that they feel alone. Even though they know they couldn't possibly be alone, they feel like they are. They don't know how they can even begin to get help. The good thing is in this information age, support resources are not hard to find! The other good news is that my blog is meant to be anecdotal and informational.
Next week, I'll be sharing some tips for parents of newborns with disabilities. However, I'll start with a couple basic ideas right now.
Learn as much as you can about the disability: What is it? What kind of challenges come with it? How can you best accommodate the situation? Don't overwhelm yourself with information but learn enough to be able to educate others and not be lost during doctor's visits.
(Side note: There are organizations that are dedicated to certain disabilities. Reach out to them and get involved with them. Go to expos and conferences if they have them. Get to know people through them that are going through the same thing as you and your spouse. The people that are going to help you the most, are the people that can empathize and that are educated on your situation, which means.....)
Once you are educated on the disability, educate others. Family, friends, teachers, therapists etc. Anyone that is going to have a close and personal relationship with your child in his or her formative years needs to know about your child's condition. (How they'll be able to help you, will be talked about in the coming weeks).
One thing that my parents have taught me is that parents really do know their children--at least when it comes to medical history. You need to try and understand as much about your child's disability as you can because, you need to make sure your child is getting the most out of services offered to them, mainly when it comes to medical problems and schooling.
Speaking of dealing with doctors, if the doctor you're seeing isn't willing to listen to you, find another one. It's not like you'll always know more than the doctor but you're the one spending the most time with your kid. You know how your child behaves and you know when something isn't right. Usually, you'll keep track of anything in their routine that changes. If you go to the doctor and consistently feel like you're being shut down, that doctor is not looking out for your child's best interest. Have a team of doctors on your side that are going to work with you and, politely rather than dismissively, tell you when you're wrong.
The first few years of your child's life will be daunting. It's a lot of research, monitoring, deciding what's working for them and what isn't, and making connections with the right people but, don't worry, you've got it. Take it day-by-day.
That's all for me this week! Leave a comment if you like what you've read and I'll see ya next week, where we'll be navigating the world of "special" education!
P.S. There are Abilities Expos held in select states during the summertime.
Visit http://www.abilities.com for more information about when and where they are.
When you leave the doctors office these questions and several others are still racing through your mind, through the next few days and popping up through the next nine months. For a few weeks, you ignore people's phone calls. How are you going to tell your friends and family?
Eventually, you and your spouse decide not to be beaten. Enough is enough. My child has a disability, so what? You call people back. You gather all the strength you can and you push through the next nine months, side-by-side. You both falter in your strength at one point or another but you use each other as a crutch. Nine months later you have given to the world the greatest achievement the average person can, a new life.
So, what is the point of me mentioning this struggle? What piece of advice could I possibly give without having a disabled child of my own? It's simple really, I was that child. My parents and every parent of a child with a disability would have never dreamed that they'd be put in that position.
However, they were.
So, how'd they get through it? They decided that yes, their child was going to be different. Their kid would grow up and face obstacles every day of their lives and they would face them too. However, they had to decide that their child deserved anything and everything that able-bodied children would have. That's what parenthood is all about after all, right? Giving your child everything that you never had? Yes, there will be challenges along the way but that's all they'll ever be, challenges. We are all challenged every day. Your child will just have slightly bigger and more frequent challenges. Remember: The child has a disability, THE DISABILITY DOES NOT HAVE YOUR CHILD.
I believe that what's most daunting to new parents of children with disabilities is that they feel alone. Even though they know they couldn't possibly be alone, they feel like they are. They don't know how they can even begin to get help. The good thing is in this information age, support resources are not hard to find! The other good news is that my blog is meant to be anecdotal and informational.
Next week, I'll be sharing some tips for parents of newborns with disabilities. However, I'll start with a couple basic ideas right now.
Learn as much as you can about the disability: What is it? What kind of challenges come with it? How can you best accommodate the situation? Don't overwhelm yourself with information but learn enough to be able to educate others and not be lost during doctor's visits.
(Side note: There are organizations that are dedicated to certain disabilities. Reach out to them and get involved with them. Go to expos and conferences if they have them. Get to know people through them that are going through the same thing as you and your spouse. The people that are going to help you the most, are the people that can empathize and that are educated on your situation, which means.....)
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| Courtesy of abilities.com |
Once you are educated on the disability, educate others. Family, friends, teachers, therapists etc. Anyone that is going to have a close and personal relationship with your child in his or her formative years needs to know about your child's condition. (How they'll be able to help you, will be talked about in the coming weeks).
One thing that my parents have taught me is that parents really do know their children--at least when it comes to medical history. You need to try and understand as much about your child's disability as you can because, you need to make sure your child is getting the most out of services offered to them, mainly when it comes to medical problems and schooling.
Speaking of dealing with doctors, if the doctor you're seeing isn't willing to listen to you, find another one. It's not like you'll always know more than the doctor but you're the one spending the most time with your kid. You know how your child behaves and you know when something isn't right. Usually, you'll keep track of anything in their routine that changes. If you go to the doctor and consistently feel like you're being shut down, that doctor is not looking out for your child's best interest. Have a team of doctors on your side that are going to work with you and, politely rather than dismissively, tell you when you're wrong.
The first few years of your child's life will be daunting. It's a lot of research, monitoring, deciding what's working for them and what isn't, and making connections with the right people but, don't worry, you've got it. Take it day-by-day.
That's all for me this week! Leave a comment if you like what you've read and I'll see ya next week, where we'll be navigating the world of "special" education!
P.S. There are Abilities Expos held in select states during the summertime.
Visit http://www.abilities.com for more information about when and where they are.
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