Dear Parents of Children with SA/CRS

by Jessica Rogers

(written at age 14)

Hi, you are probably still reeling from learning that your child has SA/CRS. I know it’s not the path you would have chosen. It is scary and overwhelming. But, coming from someone who has grown up with this condition, I want to tell you that it’s not such a bad path either. Really, it will be for you, and for your child, whatever you make it to be. My family and I chose to make it a positive road. I’m not saying that there aren’t any challenges. There are some challenges. But, it doesn’t have to defeat you, or define you. If you need some encouragement, you can read my “10 good things about having SA/CRS” article.

When I asked my mom about talking to new parents, she said,

“As parents you will be on a new journey with a child who has SA/CRS. You will meet new people, and make new friends along the way. You will change who you are, in a good way. You will learn things that you never even thought about before. And, all the while you will be simply amazed at what your child CAN do, and all of the fear about what you imagine that your child can’t do will fade away. Someday, you will even see this all as a gift. Right now, that feels impossible. But, give it time.”

It’s important to know that my mom adopted me from the country of Brazil, so she said she’s not the best person to talk about the process of learning about a birth child’s diagnosis. There will be others who can speak to you about that. I arrived in my home at the age of 14 months, and I’ve been driving her crazy ever since then!

Of course, I am not a parent, but I have had the opportunity to read emails from new parents who talked about being shocked, afraid, worried, and many trying to find answers to a lot of questions. That is understandable, and it is expected that people will have various reactions to the news of finding out that their child has a medical condition. I think there are some common reactions. They include blame, cure seeking, frustration, compensation, discovery, and advocacy. I’ll talk a little about each of these. I think they are all normal reactions to coping with the unexpected.

You may go through a time when you need someone to blame — maybe even blaming yourselves for your child’s condition. Sometimes in an effort figure out who is to blame, parents will become involved in a search to find the ‘reason’ for this condition. They may do a lot of research to see if it is genetic, if it is caused by maternal diabetes (sometimes, but not that often), or if there was something that happened during the pregnancy that caused this to happen(research says it happens before the 4th week of pregnancy). While there are a lot of theories, the answers are not clear. And, even if they were, there is no one to blame, and really nothing is gained by blaming anyone or anything. I mean, suppose you find out that yes, it was because you ate that red snow cone when you were 2 weeks pregnant, so what? How does that change anything now except to make you miserable? What is, just is. Even if you run into a doctor who has the wrong information and tries to make this your fault, my thoughts are-don’t let anyone, including yourself, play the blame game. After all, if you are going to be there for your child, you can’t be focused on who is to blame. You may have nagging concerns about why this happened. But, let them rest. Instead, you need to be focused on your child. Blame leads to quilt, sadness, and anger. “Why didn’t someone warn me?” “Why did this have to happen.” “Whose fault is this?” Sooner or later, your child will notice that you carry around guilt or sadness or anger, and sooner or later your child will figure out that these feelings have something to do with them, and with who they are. That feels very negative to a child. Then they start thinking it is their fault for making their parents sad! The blame just gets passed down to the child. From a kid’s perspective, let me just say that it’s hard to have a positive self esteem when parents seem so upset and negative. So, while it’s perfectly natural to go through these feelings, it’s best to get through it, let it go, and move forward. I’m not a parent so I don’t really know what it is like, but it isn’t anybody’s fault. I don’t think what I’m saying is easy for new parents to absorb initially. I just hope that it helps to say I don’t blame anyone for the way I am, and I don’t know what caused it-it’s just who I am. I don’t know any different kind of life. I like who I am, and isn’t that more important that worrying about why I am the way I am? So, enjoy your child for who they are. I hope you’ll find out that’s not so hard to do once you do it.

Another discussion that parents of SA/CRS children have is about cures. Depending on the severity of the physical condition, there is usually a concern about walking. One of the first things people ask about is whether there is a cure. There is. My mom says it is a cure of the heart — to realize that spending too much energy trying to find some kind of cure that isn’t there may take away precious time just enjoying your child. Of course, if your child has the physical ability to walk, that’s fine. Many kids with my condition do walk because they have more mild forms of the condition. Remember that there is a great range in how this condition can turn out. Parents should definitely encourage a child to maximize their potential and give them options. But, the real question is — just how far are you willing to go to get your child standing and walking? When does it become more trouble than it is worth? I have one of the higher levels of involvement common for this condition, including the absence of all of my lumbar and sacral spine, and webbed legs which were fused in a cross leg position. I have no ability to move my hips or legs. When I was 3, the decision was made to remove the webbed legs at the knee. It’s called “disarticulation”. After that, I could move around a lot more easily “walking” on my hands. No one really thought about me walking on prosthetics, but I was a gutsy kid with great balance and so my parents and I both decided to give prosthetics a try. For some children with SA/CRS, walking with prosthetics is a great option. For me, it was okay but, boy, it was a long ordeal. There were probably 10 months worth of appointments before the prostheticists came up with something that would work. I had a torso type brace to hold me upright and a set of bionic legs attached. It was such a challenge that there was even a television show made about it. And, after all of that, I found that walking wasn’t really that big a deal. I have the option, but it doesn’t really improve my ability to get around. So, I haven’t used my prosthetic legs since. For more information about SA/CRS and walking, see my article called “To Walk or Not, That is the Question“.

Well, I got a little off track in talking about cure seeking, so let me say that, of course parents want to explore anything they can to help their child have a better life. There are a lot of medical procedures that help with SA/CRS. For example, I had leg disarticulation. This involves removing the lower part of the leg so that it is not in the way and makes seating and getting around easier. For me, that was a great choice. Most of the medical interventions are not going to cure anything, but may make life better. Some people with SA/CRS have a lot of issues with bowel and bladder control. Some opt for ostomies, and other procedures that allow them to manage bowel and bladder. There are some hospitals that I noticed are highly recommended for addressing very difficult bowel issues. That hospital is Cincinnati Children’s Hospital. I see it mentioned on a list serve for parents with children who have SA/CRS all the time. I’ve never been there, but it seems worth checking out. In my case, I have used physical exercise to help with the ‘plumbing’ issues and I have been able to avoid surgery through careful diet and exercise. Every person with SA/CRS has some things in common and some things very unique, so physical exercise and diet will not be effective for all. Still, I recommend it for overall health anyway. It’s funny, because doctors will be quick to recommend surgery for one thing after another-but no one ever says just throw this kid in the pool and get them swimming every day. For me, it is what works. For more information about sports for people with disabilities, see my article called “The Competitive Edge“.

Another experience common to parents is frustration. This usually comes from encounters with the medical establishment. Some doctors are great, but most doctors have typically not even seen a kid with SA/CRS before. It’s frustrating not to have a specialist who knows the answers, and it is even more frustrating to have doctors seem like they know something when what they might have done is read one 50 year old article on the topic. When parents want answers about things, and what they get is no information, or misinformation-that’s very frustrating. It’s scary too, because when a doctor takes out a growth chart and tries to tell you that you are not feeding your kid enough because they aren’t even on the growth chart yet-you don’t know what to believe. Is a regular growth chart really a good measure for a kid like me? Of course not! The best resolution for this frustration is talking to other parents of other kids like yours. Some information you receive might not work for you and your child, but there can be some good leads and ideas offered too. There is a list serve on yahoo groups and there are several face book communities. See Meeting Others with SA/CRS in the navigation bar of my site to find these connections.

It’s also frustrating not to have products readily available that will be effective or usable for your child. The car seats don’t fit, the high chair doesn’t fit. The pants don’t fit. The diapers don’t fit. There is a lot of modifying and the best way through this frustration, aside from talking with others, is figuring out through trial and error what works best. I weighed 4 pounds at birth. When I was 14 months old, I weighed 9 pounds. At age 14, I weigh 45 pounds, but while I fit a size 14 girls top, I wear size 12 months baby long pants. At this point in my life, I’ve learned to figure out ways to use anything I need to use, but along the way my mom has modified plenty of things-from snow suits to ramps, to make things work better for me.

Another frustration is dealing with people who are curious, or ignorant, or just plain rude. What is important to remember here is that your child is learning from you how to handle these encounters, because once in school, and for the rest of his or her life, there will be a need to have skills to address the reactions that people have when they encounter a person with SA/CRS. There is usually some physical evidence of this condition that other people can see. In my case, my condition is very obvious. Some people become uneasy and avoid the issue. Some become overly curious and ask inappropriate questions about you and your child. Some make comments that are negative and rude. Some just stare, which is also rude. In my school, we learned 5 options to deal with these encounters, because they happen to others for different reasons too. For more information about dealing with these encounters, see my article called “Take a Picture! It Will Last Longer.

Another kind of attitude I have seen among some parents I call compensation. I think it’s like they are trying to somehow make up for what their child doesn’t have or can’t do. So, they do more for their child than they would for another. They buy them more, they fuss over them more, they get overly involved in everything, and they help them do everything. Now, I sure don’t mind being spoiled-who doesn’t, but at the same time I realize that it’s not good for me. And, if everyone is bending over backward to do everything for me, I never really learn to do it myself. That makes me very dependent as an adult. Believe me, when you are not a cute little kid anymore, people are going to be much less interested in hanging around dressing you, carrying you, and lifting you. By age 5, I think I had figured out mobility pretty well. I can get in my own wheelchair, so don’t pick me up once I’m big enough for my arms to reach. I can get the door open myself, so don’t do it for me. I can push myself, so don’t push me. I don’t need to be lifted, carried, fed, dressed or anything else. Don’t shower me with gifts. Actually I don’t mind that part but my mom says I need to learn to “appreciate hard work and a fair and just reward” just like anyone else. Don’t fuss over me. It will make me an angry teenager-and no one wants an angry teenager (ok, you might get one anyway but at least you didn’t make the problem worse).

Another type of response is discovery. Parents may become very interested and want to find out all the information they can. There are so many things to learn. What is the best medical procedure? What is the best diet? What is the best kind of wheelchair? There is no end to the amount of information that an interested parent can find. I think this is a good thing for parents to do-as long as you don’t drive yourself crazy trying to know everything. It’s important to become informed, to join organizations, to explore various options-it is about making the best decisions possible in the child’s best interest, and later-to provide information to the child when they have questions. I hope my web site helps interested parents find information.

The last response is what I call advocacy and it’s one I really appreciate. That’s when parents ‘get it’. So, if I could describe these parents, I would say they are teaching the tools that the child needs to succeed in life. They are making sure their get a fair shake-not coddled, but also not ignored. They are advocating for their child, at school, and in any other activity, teaching others what is needed and how their child can do things, and teaching their child how to advocate for themselves. They accept the child for who he or she is and gives the child every opportunity possible to be the best. They listen when the child is having a down day and don’t try to brush off hard stuff like it’s no big deal. They listen, and they try to come up with options that might make things better. They give the child a say in what, when, and how to address a problem. They have high expectations for their child.

In summary, even though you may feel discouraged at first, you will find that your child with SA/CRS is not so different from any other child, so treat them that way, and don’t set limits on what you expect for or from them because they will do way more than you expect.

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