Message to parents who have just received an RTS diagnosis
Finding out that your child has Rubinstein-Taybi Syndrome (RTS) can bring on SO MANY emotions. And then there is so much information to take in. Yet all the information won't give you any definite answers as all children are different, and so it is with children who have RTS. So feeling great uncertainty and fear is very normal.
As you read through the list of problems that kids with RTS could have, remind yourself that no child is going to have all these issues. Focus rather on the issues that your child has to deal with this month, or this day - get help for each thing as it arises rather than stress about all the things that might happen.
Please remember that your child is NOT a syndrome, he or she is first and foremost a person - with a personality, likes, dislikes, character, limitations and great potential - just like all of us. Keep your eyes on the little person, and not the medical label.
It is helpful to remember that regardless of having a syndrome, every child has potential. Our role as parents is to help this little person to reach his or her potential. There is so much that can be done to allow your child to blossom. Yet don't be alone in carrying this responsibility. Slowly build up team of support - family, friends, doctors, therapist, even us parents whose children share the same syndrome.
Give yourself time to process all the emotions...anger, shock, denial, blame, sorrow, and eventually acceptance and hope. Take things one day at a time - don't give in to the temptation to stress about the future. It will only overwhelm you, and it will not bring you any solution anyway. Focus on today. Find moments of joy from today, enjoy your child today, and fight the battles that you face today.
When you feel ready, join the RTS email support group to get practical and emotional support. To find out more about the RTS support group follow this link. Many of us are part of this group and have found it very helpful. One thing that we have heard many parents say, is that the first year or so is very tough, but it really does get easier as your child gets older. Many of the problems are sorted out and also you become better equipped to manage the problems that persist. Life does return to a sense of normal again, though it might not be the normal you once imagined. It is a new normal, and it really can be good.
We would love to hear from you - click here to contact us and tell us more about you and your child.
Finding out that your child has Rubinstein-Taybi Syndrome (RTS) can bring on SO MANY emotions. And then there is so much information to take in. Yet all the information won't give you any definite answers as all children are different, and so it is with children who have RTS. So feeling great uncertainty and fear is very normal.
As you read through the list of problems that kids with RTS could have, remind yourself that no child is going to have all these issues. Focus rather on the issues that your child has to deal with this month, or this day - get help for each thing as it arises rather than stress about all the things that might happen.
Please remember that your child is NOT a syndrome, he or she is first and foremost a person - with a personality, likes, dislikes, character, limitations and great potential - just like all of us. Keep your eyes on the little person, and not the medical label.
It is helpful to remember that regardless of having a syndrome, every child has potential. Our role as parents is to help this little person to reach his or her potential. There is so much that can be done to allow your child to blossom. Yet don't be alone in carrying this responsibility. Slowly build up team of support - family, friends, doctors, therapist, even us parents whose children share the same syndrome.
Give yourself time to process all the emotions...anger, shock, denial, blame, sorrow, and eventually acceptance and hope. Take things one day at a time - don't give in to the temptation to stress about the future. It will only overwhelm you, and it will not bring you any solution anyway. Focus on today. Find moments of joy from today, enjoy your child today, and fight the battles that you face today.
When you feel ready, join the RTS email support group to get practical and emotional support. To find out more about the RTS support group follow this link. Many of us are part of this group and have found it very helpful. One thing that we have heard many parents say, is that the first year or so is very tough, but it really does get easier as your child gets older. Many of the problems are sorted out and also you become better equipped to manage the problems that persist. Life does return to a sense of normal again, though it might not be the normal you once imagined. It is a new normal, and it really can be good.
We would love to hear from you - click here to contact us and tell us more about you and your child.