What Can I Do to Help My Friend?

My best advice is not to forget to tell her how beautiful her new baby is. One fear that parents have is that other people will look at their child an see only the syndrome, and not the beautiful little person that they see. Don't overlook the little girl's individuality. Ask her mama about her personality (calm, active, sweet, a good sleeper, very vocal, whatever...) to let her know that you understand she is like any other baby, just with an extra special heart.

I would say bring her food-- that is always nice when you have a new baby to watch after. I think I also saw an earlier post in here about down syndrome support group in Tucson- you could get her that info.

Look up the poem "Welcome to Holland" ; print it and frame it and give it to your friend from all of us who have unexpected blessings in our lives. I'm the mother of six fabulous kids, the oldest of which is multiply handicapped. I will not say the journey has been easy, but how we view the journey will effect the way we celebrate life. Also, look up services for developmentally disabled children in your area, and offer the support of rides and company for that scary innitiation the family must go through with medical/educational services. Above all...DON'T PITY THIS FAMILY!!! Be practical and encouraging, and cherish every day without fear of tomorrow!

I think you are already a great friend! My son is 10 months old and I found out after his birth that he had downs syndrome. I can totaly understand what she is feeling. Honestly it was very hard for me to talk about it without crying. I think it was a good month before I could talk about it without crying. But I still wanted to talk about it. I was scared, mad and angry. But it meant alot that people still came by to visit and to see my new little bundle of joy. There is so much I could say I'm afraid I could go on forever. Please feel free to e-mail me directly with any questions I would love to be able to help.

Just be a friend. If she needs an hour or two for herself, then "send her to her room" and watch the baby for her. We have a son who was diagnosed with DMD, and the greatest gift someone can give is to be normal. Yes, these situations are different, but we all have challenges to deal with. Sympathy never helps, but a word of encouragement, a listening ear, or an offer of help can give you the strength "Just For Today".

My first born has Down syndrome and is now 5 years old and then i have two other kids, ages 3. Brady, our son who is 5 is one of the best things that has ever happened to me. I have to say the BEST thing you can do immediately is to treat her baby like any other and say things you would normally say to a newborn. Coo and ahh and be positive around the family. The worst is when a person comes over and says, "I'm sorry," it is not a sorry situation and these parents will find out what truly a blessing they have. My husband and i used to visit families in Denver when they brought their baby home with DS. I would love to get in contact with this family and share all of the wonderful resources we have here in the valley. There is so much support for this family. ALso, my son had so many medical issues, on oxygen for a year, feeding tube, heart surgery, 4 surgeries having to do with GI issues, so we understand the fear of the whole heart thing. That was actually the easiest surgery of them all. We can help this family and i would love for you to contact me so we can talk with them. Bottom line: go over to her house and treat that sweet baby like any other. You will learn throughout the years of knowing this child that he is much more similar to any typical child than different. By the way, we never say downs child (that doesn't set well with most of us, no worries, it is an education for all) we say we have a child with Down sydrome...kinda like you would never say you have a cancer mom or aids dad. You say you have a mom with cancer (she is your mom first) and a dad with aids. That is how we see our kids; they are our son or daughter first, boy or girl first..and oh ya, they have down syndrome. Not trying to make you feel bad here at all, just trying to help. My email is ____@____.com and phone is ###-###-####. Celebrate with this family of a new child! maybe bring over a toy or two? be positive. Thank you so much for posting this! i so appreciate your honesty and willingness to help> You neighbor is very fortunate to have you in her life!!!!! D.

My son is almost 4 years old with Down syndrome. One of the best things I did was connect with our local Down Sydrome Network group. They have awesome activities including family gatherings and workshops on all kinds of topics. The great thing is just to meet other families and to learn that DS kids are just like any other kids, with a few challenges added in! YOu can have her contact me directly at ____@____.com if you want. My name is K. Moore. I have 2 sons - one is in first grade and the other is 4 in 2 weeks with Down syndrome! The best thing you can do as a friend is tell her how cute her new baby is and acknowledge that she will have challenges, but she will get though it! People with DS are doing wonderful things including graduating school and having jobs. I just met a 30 year old woman with DS who swam the English Channel! She also needs to connect with DDD thru the state to start getting therapies right away! Have her ask her pediatrician.

Hi B.,

I too have a friend that has a baby boy with a heart condition and Down Syndrome. When I heard, I immediately wanted to know more about what this family will be going through. I bought the book "Babies With Down Syndrome, A New Parents Guide" Edited by Karen Stray Gundersen. It has many chapters written by different doctors, therapists, and parents etc. I found it to be very helpful.

Chances are her baby with DS isn't any different than any other new baby. Sleepless nights, tired parents, dirty diapers etc. Bring them dinner, hang out with her, offer to come over and hold baby while she showers... just like any other new parent. Don't be afraid to ask questions. Chances are, she wants someone to talk to like any normal parent. Ask about his birth, let her tell the story.

As the days go by, he'll likely have a heart surgery (or two). He may not. He may be delayed in his ability to hold up his head and he may not. He may have a delay in his eating solids, he may not. There are a lot of unknowns with a child that has DS as the severity is yet to be determined. My girlfriends son is now 16 months old. He's had 2 heart surgeries and spent many many months in and out of the hospital. We have helped them financially, we've helped care for their older child, helped house sit and dog sit while they were at the hospital days on end. I pray her baby never has to deal with all that my friends did (and still have ahead).

In any respect, just let her know that if she needs anything, you are there for her. Whatever it is... That goes a long way! Tell them CONGRATULATIONS on their beautiful baby boy! Having a child is a wonderful thing. ALWAYS!

I think it's wonderful that you want to reach out to her. I'm not sure if she's a first-time mom or not, but with your experience being a mom, you have a lot to offer. IF she had come home with a baby without any medical issues, she would likely appreciate help - so since she has her hands (and heart) doubly-full, I think it would be great for you to reach out to her.

One product that might really help is:
www.miracleblanket.com which is 100% GUARANTEED to help babies sleep - and therefore parents too ;)

I am in Tucson too - and I have some on-hand that would save you shipping charges.

Here are some great links on DS that may help her/you:

http://www.ndss.org
http://www.sandsaz.org/

Best,
C.

There is an orginization out there called Raising Special Kids and they are a wonderful support for all disabilities. They are not only a resourse, but they can connect her to other mom's in the area with children with the same diagnosis. I worked as a devleopmental specialist for a few kids with DS and all of the parents used Raising Special Kids. She should also be connected with Department of Developmental Disabilities and Arizona Early Intervention PRogram. In the future, the child will most likely be developmentaly delayed and those agencies can provide state funded therapy for the child. If you need more info on any of these agencies, let me know. As far as being a friend, you are doing the right thing for just looking for ways to help.

B.,
Your compassion towards your friend's discovery is greatly appreciated, I'm sure :-)
One of the most important ways you can help your friend is to be with her without feeling that you can "fix" this situation because you "can't", neither can she. The only thing that can be fixed is our attitudes about those born with what we call "disabilities" versus "special abilities".
Let's try presenting your friend with movies, news articles and books written about individuals who have survived and succeeded, in spite of their diagnosis.
I am probably viewed as a non-traditional educational psychologist because I refuse to believe that persons diagnosed with "disabilities" are doomed. I have witnessed students graduating from college and vocational training and leading exemplary lives. Parents are generally fearful of the teasing their child will have to endure, along with the burden on finances, emotional climate of the family and extended family, and the negative perceptions of society, but you can help her by pointing out all the positives. Let her know what a wonderful mother she is to accept her little angel and the lessons she/he brings to light for all of us.
Love and Peace,
D. A., MA, CRC, Doctoral Learner

B.,
The best thing that you can do for her is to go over and just love her baby. A now dear friend of mine had a son who shortly after he was born started to have a severe skin reaction to his food allergies. It is a long story but needless to say he was a very "different" child medically. All Joanne needed was someone to love her child despite how he looked, or cried from the pain. I was the only person who was willing to hold her baby and comfort her baby when even family shied away. It impacted her for life and she was able to get through so much because someone reached out to love her son. We put so many hopes and dreams into our children when we are waiting for them and then something doesn't go as we planned. If the people around us do not embrace our child it is a scary time, and adds to the stress of surviving their medical issues.
M.

Like others have said you are already doing a lot just by being concerned and wanting to help. Just getting geniune support from people means so much to those going through challenges, and a listening ear can make all the differnence. You sound like a great neighbor to have!
I have a very close friend who has a daughter with Down's Syndrome and a heart condition and has gone through a lot with this little girl. But she is doing amazing and my friend has found some key things that have really helped her daughter. I would love to have her share those things with you, and maybe down the road be able to hook your neighbor and her up as she felt more comfortable. Let me know how I can help.

I think you are more of a friend than you think, you are taking the time to write this letter, that constitutes a friend! Just be there for her, and find out as much as you can about downs. Unfortunately I don't know much about it accept that children with downs are some of the most loving human beings in the world! Be there for her and be the good friend that you are already are being!!

S.

hi i am a mom of 5, 3 of which are triplets and they all 3 have autism. I know that there are groups for most disabilities to help support the family and individual effected. I think that in tucson i have seen info for SANDS not sure what it stands for you also could contact pilot parents they would know how to help.if you google either of them you should find something. as a parent of children with a disability i can tell you that i appreciate all support i can get,most people want to help and do not know how, or are affraid to ask how, i benifit from friend and family helping with laundary and coming over so i can make phone calls without having to watch my kids at the same time.I think it is wonderful that you want to help.good luck W.

I have two kids of my own with chronic illness. There is a wonderful group called raising special kids. I do not know their phone number by hand but it is in the phone book. They have wonderful staff and are very supportive. They will get her in touch with other parents who are dealing with the same issues. They also have plenty of groups that teach them what to expect with schools, baby sitting, etc. I would give her the number. You will not know what she is going through and don't act like it. But if you go and visit, just be there sometimes, so she will have some adult interaction and talk about anything other than the baby issues. She will love it. If she is having a bad day and needs to vent, try not to blow her off. It will make you uncomfortable, but try if you can. Best of luck. But please give her the number. She will really need it.
kat

Let her know that she can count on you whenever she needs anything. As women we tend to not always accept help when we really need it so let her know you you aren't just saying that to be nice, that you really WANT her to call you.

Bringing food is always great but you can always bring an encouragement gift also. All new moms need encouragement. Something in a cute bag that's just for her!

My house is 5 to 1 males also counting 2 male dogs.!

T. C.
Spa Girlfriend Parties
www.spaescapescottsdale.com

Maybe making a meal for her and taking it to her. Get to know her a little better and share some of the fears you had with your first child. Sharing stories always makes the knew mother of these disabilities feel as though she is not alone! I had my first child at 18 and she was born with severe disabilities. She was not diagnosed until 14 mo. but she has cerebral palsy, epilepsy, profound mental retardation and autism. She is currently 21 and in a group home about 10 miles from me. I get to see her whenever I want. I then have a 19 year old son in the Navy and a 13 year old son in 8th grade. I had my last child who is nine and she was born without the roof of her mouth. To make a long story short it is good to be able to talk with someone who has feared for their child. It has given me much strength and I truly believe there is a god above!

R.

My 2nd daughter was born with all kinds of surprise health issues, and the support of friends bringing dinners was wonderful. Perhaps you could organize a schedule with others on your block? It takes one daily stress away for a bit, and lets her feel supported.
I can tell you understand: Love thy neighbor as yourself. Good job.

I can see that you've received some wonderful advice already. I want to echo two things in particular: 1, Don't forget to tell her how beautiful her child is. My best friend has been so wonderful about knowing when I need to hear how beautiful my son is. He doesn't have the issues that your friend's child has and when I am feeling self conscious after fielding weird questions from people in the grocery store or insensitive comments from people who should know better, it's just so nice to hear and to have the chance to bask in my son's wonderful qualities. 2, As a new mom, more than anything, I wanted help with housework. I had a lot of offers to spend time with the baby. The thing was, I wanted to spend time bonding with my son (and healing from the whole child birth thing) and having someone dust or clean a bath tub would have been AWESOME. I would never ask anyone to help me by cleaning my house, but I would have said yes if someone offered. The best thing is just to let her know that you're available and want to be supportive in whatever way she needs. I think asking her about his birth (as someone else mentioned) is a good idea. Then she'll be the one who decides what aspects she's ready to discuss at that moment.

Check out websites that talk about Downs Syndrome. There are so many great ones. Several even have online support groups for families and friends. There is a village (Pathfinder Village) in (Edmeston, NY)Upstate NY that is dedicated to the lives of those with Downs Syndrome.

Bring over a meal or meal(s), offer to clean her kitchen or bathroom, offer to bring some groceries over.

start out small just make them dinner or something

Just assure her that it will all be ok. I had a son who was born preemie and born with a hearing loss at birth. I know that it is scary at first, but assure her that God gave them a gift (baby) I know from experience, because I had it very hard with my son, until my grandmother explained to me that "God only gives babies to parents who he thinks can handle a child with it be down syndrom, deafness, blind, etc..)Think about it, your neighbors have a special gift that not every family gets. I know at times it can be hard,stressfull but there is always that light at the end of the tunnel. Be supportive in anyway that you can, because she needs that extra support