P
Patrick2340
Guest
My daughter was born with Down Syndrome almost three years ago. She is a bright, healthy, happy young girl. Certainly she has difficult obstacles to overcome, but Katie has a loving family to help her. We feel particularly blessed to have her.
On a practical level, your cousin and his wife should start looking into the aid they may be eligible for in the event the child does have DS. In Wisconsin we are fortunate to have the Katie Becket program that is run through Medicaid. Katie Becket covers all our DS related medical expenses. Without Katie Becket our daughter would only get six months’ worth of therapy a year, and we’d be heavily in debt for all the medical visits we’ve had to make. Most of the medical visits will be made early in the child’s life, and, God willing, they will taper off as he/she gets older. Also, they should see if their local hospital offers Birth to 3 and what it takes to get their child into the program. Also, tell them to find a pediatrician who has some experience with DS.
I know there is a good chance the baby doesn’t have DS, however, time is of the essence when dealing with DS. The sooner you get your child into Birth to 3 the sooner the therapists can begin addressing any developmental issues baby might have.
I’m giving you some advice from my personal experience. We opted out of the testing, and the doctor who delivered my daughter waited until my wife was alone to tell her the bad news. The doctor we chose to be our daughter’s pediatrician ignored the pediatric cardiologist, the DS specialist, and my wife when working with Katie. We ended up switching pediatricians for my daughter after two years. The occupational and physical therapists were wonderful, but the speech therapist waited six months longer than necessary to evaluate our daughter, has consistently cancelled appointments because she is also a manager, and doesn’t even try to reschedule during the week.
Your cousin and his wife are going to have to become tough, strong advocates for their child (if baby has DS, that is). Don’t let anyone push them around. And if they come up against tough obstacles, they should contact the National Association for Down Syndrome. Also, there may be a state or even local chapter. In Wisconsin we have DSAW (Down Syndrome Association of Wisconsin). They have been very helpful and supportive.
If your cousin and his wife need any more information or they would just like some advice, please have them email me. You can send a message to my CA account.
On a practical level, your cousin and his wife should start looking into the aid they may be eligible for in the event the child does have DS. In Wisconsin we are fortunate to have the Katie Becket program that is run through Medicaid. Katie Becket covers all our DS related medical expenses. Without Katie Becket our daughter would only get six months’ worth of therapy a year, and we’d be heavily in debt for all the medical visits we’ve had to make. Most of the medical visits will be made early in the child’s life, and, God willing, they will taper off as he/she gets older. Also, they should see if their local hospital offers Birth to 3 and what it takes to get their child into the program. Also, tell them to find a pediatrician who has some experience with DS.
I know there is a good chance the baby doesn’t have DS, however, time is of the essence when dealing with DS. The sooner you get your child into Birth to 3 the sooner the therapists can begin addressing any developmental issues baby might have.
I’m giving you some advice from my personal experience. We opted out of the testing, and the doctor who delivered my daughter waited until my wife was alone to tell her the bad news. The doctor we chose to be our daughter’s pediatrician ignored the pediatric cardiologist, the DS specialist, and my wife when working with Katie. We ended up switching pediatricians for my daughter after two years. The occupational and physical therapists were wonderful, but the speech therapist waited six months longer than necessary to evaluate our daughter, has consistently cancelled appointments because she is also a manager, and doesn’t even try to reschedule during the week.
Your cousin and his wife are going to have to become tough, strong advocates for their child (if baby has DS, that is). Don’t let anyone push them around. And if they come up against tough obstacles, they should contact the National Association for Down Syndrome. Also, there may be a state or even local chapter. In Wisconsin we have DSAW (Down Syndrome Association of Wisconsin). They have been very helpful and supportive.
If your cousin and his wife need any more information or they would just like some advice, please have them email me. You can send a message to my CA account.
