I need some advice for a girl that I have benn helping. She is 17 and I, a 26year old mom of 2, helped her get through her pregnancy as her family is not involved. I attended the birth two weeks ago, however, today we found out that her baby girl has down sydrome. she is looking to me for help and I don't know how to help her. She has a temporary place to live, no job, no money, and no support from her family or the 17 year old father. It was going to be near impossible as it was, now we are facing a child with a disability. Any advice as to what I should tell her to do?
Being a mother of a typical child is hard enough, having a child with special needs is emotionally, physically and economically draining. The mother of that little girl needs lots of support- from her famliy, friends and the community. The waiting list for adopting kids with ds is long. There are lots of families who would love to take that little girl into their home. Look for your local ds groups. Good luck.. it's going to be a long and hard journey.
I would suggest that your friend go down to the local Social Security office and start the application process for SSI. The baby should be entitled to Tefra/Medicaid and maybe a monthly benefit.
Also, find out from the pediatrician what type of program is available to assist guardians who have infants from birth to three. Some states call the program First Steps or BabyNet. I'm not familiar with any other names. These programs are super with helping a parent explore all the options out there that are available, including SSI, food stamps, ABC vouchers for daycare, etc... They also provide early intervention specialists that come to the home and work on developing skills. They are the ones that handle referrals to specialists and therapists. If the ped doesn't know then you will find these services at your counties Disabilty and Special Needs office. Easter Seals also provides the same type of services.
These are some suggestions on where to begin. I wish your friend the best of luck. Down syndrome children are beautiful but the medical obstacles can be overwhelming especially to a young parent.
Congradulations on the birth of a most beautiful baby!!! Read Kabees post
again and do everything she says. Get the kryotype, and birth certificate
before you go to social security office. The kryotype will open alot of
doors for you. Go to local down's syndrome meetings, the parents are a
wealth of information. The medical can be daunting, so medicaid is a must.
It is scary at first, when someone in a white coat says down's syndrome.
It was for me anyway. Now 3 years down the road I wouldn't trade this
scamp I have for anything!!!! He builds stuff, colors, paints, goes to resturants and behaves better than some normal kids I've seen. He is more
of an assest to me than a detriment. It is scary at first, but believe me
most parents I know with a child with DS wouldn't trade their kid, or the
experiences they have with their kid for anything!!!! Congradulations again,
and read Kabee's post again and do everything she says!!!!!
You are so refreshing, Seekers! I do not have a Down's baby but went through the worry when I got pregnant at 40. I say 'worry' but by the 16th week and amnio time I wanted that baby so much Down's or not. I'm currently working with two babies in their homes - both having been born to young mothers. Just an observation, but, I am definitely seeing an increase in Down Syndrome children as well as autism. Have you heard that it is becoming more prevalent?
The little girl that is in my daycare with DS. Very cute. Her mother also has DS, but you wouldn’t even know it, I think its just very light, I guess, or she was raised so well, today she is completely normal. Like I said you wouldn’t even know it. you can only really tell from her voice. But her daughter got it bad. So maybe it’s genetics. The father does not have DS. But you can tell he loves his wife and daughter very much and would not trade them for the world.
There is an increase in EVERYTHING, all mental disorders have gone up.. cancer rates have gone up, heart problems have gone up... intolerances to foods have gone up, weight problems.. and it goes on and on... everything has gone up. The thing is, we can treat this stuff, but we cannot fix genetics.. and if you could, would you really want to? The only reason I would want to change a genetic defect is if it would kill them. and the more people we get the more genetics you are exposed to. Someone has it in their genetic chain, who knows how far back. And honestly being exposed to all these different things. ADD children, DS children, cancer. Really makes us as people stronger. Learning how to deal with what we have. Make it better, or if we can’t accepting it.
I just got ciliac, something that is genetic, from mother or father, but both my parents don’t have it, and they don’t know which it came from. Does it matter? No. Life is interesting because of who were are made up as. And how we learn so much about ourselves and our families.