DownSyn Forum

Love for our girl · Posted: April 20 2012, 10:36 PM Post subject: How do I prepare

Hi every one we r parents of a eighteen month old beatiful daughter that was diagnosed with ds about a week after birth. We thought our life was spiraling down. We were so wrong our little girl is our life and so special to us. I am always some one to prepare for the future but now I am lost. How do I plan for her future I work two jobs so that my wife can stay home with my children and teach her all that she can and she does such a great job of it. What is going to be my daughters options should I put away for her college or put away for some where for her to stay. We r not made of money by no way but I want to give her every thing that I can. Any help please.

Emdad · Posted: April 21 2012, 9:00 AM Post subject:

Hello, and welcome!
My first reaction to your post is "Breathe!"
You've got a bit of time, and, frankly, the answer to your question about the specifics of financing your daughter's future are going to depend on her and who she's going to be (and I'd like to point out that that's true of any child).
Saying this as someone who started late, saving is important, and you are wise to start now with something.
The answer (and we haven't done it yet) is called a "Special Needs Trust." It's the way to provide for her in adulthood and after you're gone. I know that others will give you better info than I can.
If you'd care to share where you are, there may be other members who could point you to specific services/help/advisors for you.
Hope to see more about your family.
Jeff
- Dad to Samuel, 15 and Emma, 12

Love for our girl · Posted: April 21 2012, 10:01 PM Post subject: Thank you very much

I had never heard of a special needs trust and definitely will look into it right away. And yes I guess I stress to much but I have had health issues and it has made me sit back and think if I am not here for her. I am going to try to upgrade our profile if I can figure it out this is my first forum so work in progress but I will say this is the best thing I have done sense we have found out she had DS. I should have did this a long time ago we just did not know how or who we would talk to we still don't tell many people we just don't want them to treat her different. By the way we r in northern NY close to a little city called plattsburgh

LinMac · Posted: April 22 2012, 2:45 AM Post subject:

A big welcome to you to Downsyn!

We have a few members in NY!
This is a great support for families, you'll learn a lot on this forum and there is lots of support from members!

I'm Linda, mom to Robert who also has DS. We live in Dublin, Ireland.
Whats your daughters name?

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Linda & John
mom to Hannah Kate (Age 14 ), Robert (Aged 9 - DS)

First Communion Day

Love for our girl · Posted: April 22 2012, 10:49 PM Post subject:

Her name is Caydence I know spelling lol but I just wanted her to be different if I would of only known she is going to have her hands full already. I am so excited to check into this trust it would help me feel better about her being ok when I am not here. I work two jobs now so my wife can stay home with her and I just feel like she is going to need some help when I am gone. Thank you for replying this is helping me so much.

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We are proud parents of a beautiful little girl. We are so lucky to have her. We are fortunate she has been a very healthy little one. She scared us coming five weeks early and only being four pounds but she has grown into our sweet little girl.

maziebaby · Posted: April 24 2012, 9:17 PM Post subject:

welcome, Our pediatrician suggested a Special needs trust to us and we did one when she was about 8mo old it was easy and is paid into about once a year . It has given my husband and I such peace of mind Laughing

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Lisa Wife to Glenn Mom to Johnathan 24 Allison 21 Chad 15 Greta 14 Sarah 12 Jennifer 9 and Mazie 6 (DS/ vsd repair 8/03)

mary c · Posted: May 09 2012, 8:10 PM Post subject:

Hi, I didn't notice this when you first posted it. I just wanted to welcome you. I am originally from across the lake--Burlington, but now live down in Westchester County.

Currently legislation is pending in Congress called the ABLE act which will allow parents with children with special needs to set up accounts for their children, similar to the 529 college savings account. Hopefully this will pass. As the other posters mentioned, you can set up a special needs trust for your child now.

Enjoy your little girl.

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Mary
Mom to Libby 6/92, Alex 9/93, Anna (DS)12/12/03

Please support the Down Syndrome Research and Treatment Foundation http://i139.photobucket.com/albums/q284/maryc_010/a13-1.jpg[/img]

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Wild-Angels · Posted: May 09 2012, 10:39 PM Post subject:

Hi welcome you will love this site..it helped us when our son was born..hes 6 now..more then any doctor ever helped us....the parents here are wonderful and your bound to come across someone with an answer to your questions

I often wonder about Blakes future...all i want is for him to grown up to be independant and happy. Want him to be able to look after himself in the day to day world the same as all my kids...I often wonder what would happen if god forbid something happened to us..but we are fortunate to have so many family members who would love to take him....

A financial plan is a great idea...we are not rich either...more on the lower schemes of things lol but you manage....Even if you put $10-$20 a week aside...she is so young and over time you will be amazed at how much you accumulate.
I wish you luck and look forward to photos and updates of you precious girl

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Tigger · Posted: May 10 2012, 4:35 AM Post subject:

Hi and welcome. I have some health issues myself and, although I am not the financial provider, I am still mindful of what can happen if something were to happen to me.

We haven't done anything financially speaking but are making sure that Talitha is a part of our community in many ways and encouraging people who care to become part of her life. One of her respite workers is a lovely lady and Talitha loves her so we make sure to apply for respite during school holidays to continue that relationship. Her teacher is also wonderful and I am planning on keeping in touch even after the end of the school year so that Talitha can maintain that relationship too. There are people who are friends who have spent some time with her so she knows and trusts them. All of these things are preparing for her future as there will be many people around who are interested in her wellbeing and not just our family. She also has a local regular doctor who knows her and her medical issues.

Talitha is 6 (7 in November) and I chose a private school as the best option for her education locally. It is expensive and so it would have been good if we had put some $$ away for that but we are managing. Soon we are rearranging our finances and will start putting something away for all our kids. It will be small amounts but she is only 6 so in 10 years it will be a meaningful amount.

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Karyn
Mum to Nikki (Jul 89), Stefanie (Sep 96), Joel [June 98] and Talitha (DS) (Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14

Asa's Momma · Posted: May 14 2012, 3:31 PM Post subject:

Hi and Welcome! Yes, enjoy her. Time flies when you're having fun! We are across the Lake, through the Woods and over the River in New Hampshire Wink

I do not have a trust for Asa. We should start saving for College it will be here before we know it.

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"Life is What You Make it..."
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Jackie, Brian, Asa and Gracyn