Ladies - I Need Some Support Advice

See if she has seen this beautiful letter that appeared in the Dear Abby column: http://www.journeyofhearts.org/kirstimd/holland.htm

It is a great reminder for all of us about having our hopes and dreams changed. Be sure to congratulate your friend on being a new mom! Ask to see pictures. Tell her she is beautiful. All the same things you would do for anyone who just delivered.

I believe God gives the mommies that he deems extra special and full of tons of love these special babies. You should respond to her new little angel just like you do for anyone elses. She is just as special as anyone elses.... My friend has 1 bio downs child and just adopted 2 more downs children. I have learned alot from her... like it really hurts when family and friends alienate the family of a child with downs... they just want to be treated like everyone else. Please take a look at her blog... http://welovemeghanleigh.blogspot.com/ you could even email her about any advice or your friend can ask for support.... just let her know I recommend her for advice/support. She is a wonderful lady and an inspiration too since she is a breast cancer survivor too.

My baby doesn't have downs, but she does have spina bifida. God chose your friend for a reason... she must be strong! Treat her like you would any other baby or child and let your friend do the rest.

You'll have to let your friend lead you on this one...
for some the diagnosis of downs is a "tragic" event, for others they receive the diagnosis with grace and even joy.

My friends 13th baby was diagnosed with Downs...her husband asked the doctors to be the one to tell her. He held her and said "Obviously God wanted us to be parents, He has blessed us with 13 children. Finally He has blessed us with a child who will never leave us, a child who will always be angelic, joyful, sweet, innocent and loving."
Their daughter has been a tremendous blessing to their whole family.

I have another friend who has a 1 year old Down's daughter. She to is such a blessing! She lights up the room wherever she goes!

I would not approach your friend with sympathy. Instead acknowledge that her dreams for her child may have to be re-thought but new ones will take their place. Remain upbeat and celecbrate her babies birth as you would any other. After the intial shock my hope is that she will see what a blessing she truly has...

We have been trying to adopt a Downs baby...do you know that there are 500 prospective couples for every 1 Downs child born? I guess that they truly are a blessing...

Hi A.,

Respond the same as you would with any other baby! YOu did not mention if there are any health issues, many babies spend some time in the NICU when they are born. If they are still in the hospital, offer to visit. and bring a copy of the story below.
There is a HUGE network here in Phx www,dsnetworkaz.org with many smaller groups around the valley depending on where she lives. THere are always playdates and events all the time. She will have more support than she will know what to do with. THe state will get her daughter signed up for services in the first few months, and she will be eligible for any help she needs. Feeding Therapists and physical therapists are the ones that usually start first, then add in occupational therapists (they help with more of the fine motor skills like holding a spoon or a crayon, and getting them to cross the midline with their hands to activate pathways in the brain. Sorry I could go on for days in all this) They even provide Respite hours, which is basically babysitters by trained providers, to give you some time away if you get overwhelmed, or just need to recharge, or even just for your baby to get used to new people.
My best advice to her, is to stay positive, and stay strong for her little girl. THis little girl is going to show her things about love and life, sharing and compassion that she never dreamed possible. Dont get weighd down by all the negative expectations of kids with DS. Keep your expectations and goals high, and help her work towards and reach those goals. Dont think for a minute that there is anything in this world that that little girl wont be able to do. There are adults with DS that live on there own, go to college, drive, get married, have kids, they go to prom, are prom Queen, have good jobs, do amazing things with their lives.

My daughter is now 7 years old, and we found out pretty much the same way. It was amazing to me how much negative information was out there and not much positive.

My daughter is in 2nd grade in a regular school with regular kids. She plays soccer, rides horses, learning to ride a bike without training wheels, loves movies, and can recite the words to most of them in her library. She has good friends in class, she is starting to read, can do basic addition and subtraction, is getting an A in science, her favorite class, and Gym, her second favorite. She runs and plays just like all her friends. She is queen of the playground. Everyone in her school knows who she is. And everymorning she has dozens of kids lined up to greet her asking for their morning hug. (Somtimes takes a while to get to class...:-)
There are always going to be people that prefer to live with fear and hatred, and there are some parents in our school like that, that are passing it on to their kids, but wow is it amazing to watch one of those kids start to understand and love rather than hate. This is where your friend will need her strength. To not give in to the negative, and not focus on all the bad what if's.There are soooooo many amazing advancements in science today, they are understanding ways that nutrition can help our kids, and how nueropathways can be modified, and brain plasticity can be manipulated to get the brain to work better. All these things are possible and will be there for this little girl to help her overcome any obstacle.
I could go on for days. If she needs someone to talk to, you can have her call me ###-###-####
I promise not to talk her ear off, but am here to listen and help in any way I can.

Here is the story I mentioned way back at the beginning of my post. It is a very good story, but I dont agree with never getting over the loss. I am glad it is in there, but you can definitely get past it! :-)

Welcome To Holland
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

I have worked in "Special Ed" for a few years although no experience with Downs. I think the best thing you could do is to be there for your friend. It will be a tough road but never the less she has been given a gift from God, a baby girl. There are several things thru the public school system. Please tell your friend congrats on her bundlbe of joy!

Be happy & excited for her. She has a new baby!!

Special needs kids are the most easy to love, the most innocent. Her doctors should help her get involved in all the early years' programs. I moved to AZ when my severely autistic son was 5--too old for the birth -3 years programs & it was hard to find something I felt was right for him. When you start at the beginning, it's so much easier. She should have a number (or email) for somebody or an agency that she can call with any question at any time.

Help her find a good sitter. With kids that require extra time, her marriage will need special focus too.

--R. J

I had a Down Syndrome child 42 years ago and the best advice I got was from her pediatric neurologist who came bouncing into my hospital room and said "you're going to love this child!" He said she was a "normal" baby in that she slept, ate, cried and pooped, and would continue to be "normal"until she started to fall behind her peers, probably at about 6-9 months. We took his advice and took her home and fell in love with her as everyone else did because she was so cute and babies are to love. Down Syndrome is a challenge but also an adventure for the parents. Please do not treat them as if the world has come to an end because of this "tragedy". They will find people like themselves for support and programs to give this baby every advantage that she will need to grow and become a productive citizen.
Also see www.raisingspecialkids.org to get in touch with people who can help.
D.