Worried I have a blind spot

[laurence]

Read this article:

http://www.msnbc.msn.com/id/7052067/

and it caused me to worry. My daughter, Victoria, was born with Down Syndrome six months ago. She is an angel, and we love her to death, but we won't always be able to care for her. Does anyone have any experience with the financial issues that come from having a special needs child? Should I be setting up special trusts etc. for her? help.....

 

[Martha]

I suggest considering a special needs trust for her.
This may help enable her to be eligible for various benefits but have extras paid for by the trust.

Martha

 

[haha]

Martha, we are so lucky to have a friendly, entertaining poster like you who also happens to know A LOT about important areas where most of us know nothing.

Brat is another woman attorney who has been most helpful.

Thanks for being here! Hope your recovery is going well-

Mikey

 

[laurence]

Thanks Martha, will look into it!

 

[Martha]

Thanks Mikey. Now all we need are some doctors to bounce ideas off as to what to do about our ailments.

(Sorry Laurence for interrupting your thread. I trust you belong to an organization for parents of children with Down Syndrome? They must also have ideas on planning for the future)

 

[laurence]

Yes, I do, but just like the population at large, planning for retirement is just not on the radar. Our daughter seems to be high functioning ( a little early to tell) but she understands cause and effect, humor (pee-ka-boo) etc. and if she is, things are actually pretty bright for her future. We have made new friends whose children have moved out, gotten jobs, and have great lives. She also qualifies for a lot of aid (health care, Social Security etc.). In fact I'm a little embarrased by what she qualifies for, and we are definitely declining some of it (do you know they wanted to give us a handicapped placard? Hello! )

 

[charlie]

Laurencewill, there seems to be a special love that
radiates from Down Syndrome children that captures
the hearts of all they touch. We have several families
in our church with such children and they enrich us
all. Keep the faith, mi amigo.

Cheers,

Charlie

 

[indymom]

Not exactly the same situation, but a friend of mine has a schizophrenic son who will probably need help the rest of his life. She has looked into it extensively and is working with a lawyer, who specializes in this sort of thing, to set up a trust for when she is not longer around. Apparently there are people, planners or attorneys, etc., who focus on this sort of thing. Maybe you could check around, esp. with your support group folk.

 

[laurence]

I will, thanks to all.

Charlie, yeah, she is a little love bug, wakes up with a smile, laughs and plays all day long, fusses for about a minute, and drops off to sleep she really is amazing and has enriched our lives so much already. Our church has really rallied around us and we've been positively showered (I don't think we'll have to buy an article of clothing for a year !)

Indymom, your friend has a tougher road than we do, I think. I hope they are doing o.k. I'm definitely checking into a trust. A quote in the article sums it up perfectly about how we hope she has a wonderful, happy, fullfilling, long life and that we life one day longer than she does. But we won't always be there, so we have to plan! Thanks again.

 

[yelnad]

My Uncle has moderate DS and we just celebrated his 50th birthday! Thankfully, his mother is still healthy and around to see it, although Uncle Jerry has been living in a group home for the last 15 years or more. It was his choice...one day he said, "Mom, I'm getting my own place!" and she got him on a waiting list. He leads an amazing and full life of work, family, and friends.

I believe my grandmother has special needs trust set up for him, although he does not rely on her for any financial support because of the aid he receives (and has not for years).

 

[rapoole]

Greetings-

By all means look into a special needs trust. However, it is a little difficult to plan till you have a picture of the kind of life your child will enjoy in the future. I've given some thought to this - I am an attorney with an 11 year old autistic son.

In the meantime, read Laying Community Foundations by Linda Stengle, available at Amazon. It is both uplifting and contains a lot of helpful ideas for planning a fulfilling future for a special needs child.

rapoole2000

 

[BUM]

lawrencewill,

Our good friends and neighbors have a Downs daughter now in her late teens. They have her on weekends. Otherwise she is cared for in a facility operated by the catholic church. Our friends admit they were lucky to get her in but these good places do exist in many communities. It did eventually become impossible for the parents to care for her.

BUM

 

[laurence]

Bum, did they say why it became impossible to care for her? Was it health problems of their own or did she need too much care?

 

[hocus]

I happened upon this thread and I want to be a little bit serious just for a moment here, Lawrencewill. I'll return to the other jizz-jazz in a monent.

One, my family will include you and your child in our prayers tomorrow night (we've already said them tonight). I tell my two boys that God listens more carefully to the prayers of little boys and girls, so it may be that they might be able to help out in some small way.

Two, one of my fears is that I have had too many blessings in my life. I of course do not know in any detail what happens on Judgment Day. But I have this idea that God may hold those who have had it too easy to a higher standard. I don't think I am a terribly bad person (I hope TH is not listening in). But I worry sometimes that being a sort of OK person might not be good enough for someone who has had as much good stuff handed to him as I have.

The thought here is that I believe that the love you feel for your child may count extra because there was so much more work involved in feeling it. I don't know what I am talking about, of course. It's just a notion I am throwing out. I hope I could handle the sort of thing you have been asked to handle if put to the test. I would do my best, but I really don't know what I am made of because I haven't been put in those circumstances.

Going by what I read here, you have already passed the test (although it continues, of course). I admire you for that.

 

[laurence]

*****,

That was a kind, thoughtful thing for you to say. The only appropriate words I can say are "Thank You".

We all face challenges, but I wouldn't trade Tori for the world. No matter how much love I give her, she gives me more in return.

A moment that stands out with me was when my daughter had a sudden respitory attack and I had to call 911. We rode down in the ambulance and my wife met me there. The ensuing scene was right out of ER, with several doctors and nurses screaming at each other about her vitals crashing, and proceeding to intibate her (stick a tube down her throat to breath for her since she couldn't). They ushered us out of the room, and as we cried, I looked up at the T.V. and the wreckage the Asian Tsunami wrought on so many. We saw how thousands of children with problems like broken legs get treated with remedies like amputation, and so on. My daughter was being treated by several specialists at a world renown Children's Hospital, while so many others died of easily curable conditions because doctors couldn't even reach them.

My daughter is doing great now, and we never feel sorry for ourselves. We are grateful for the time we are given.

 

[Eagle43]

Laurencewill,

May God Bless you and your Family. I can only hope and pray that your daughter has a happy life, and that you and your wife can care for her both financially and spiritually. I can't provide any specific advice, only best wishes.

 

[Dreamer]

Laurencewill,

Your daughter is blessed to belong to your family. You are very wise to see how she enriches your family.

Your post brought me to tears. I wish your daughter has continued good health. I am glad to hear that she will be growing up in a church family.

I will keep your family in my prayers.

Dreamer

 

[laurence]

Thank you both so much. I realise it's kind of hard to hijack your own thread, but I kinda went off on a tangent there. Guilty of Doting Father Syndrome!

O.K., one last picture, hours after Tori was born. Did everyone feel as tired as I look after their first came into the world?

Thanks again to all for your prayers! Cheers,

Laurence

 

[cute fuzzy bunny]

You both look pretty good!


Our initial expected delivery time was a little after midnight.  Gabe was born at 6am sharp.  We had about 25 relatives that I was feeding and pouring coffee into all night long.

I've been up later...but not in the last few decades.  Certainly NEVER for better reasons.

You're most entitled to hijack your own thread. We'll certainly hijack your threads on a regular basis. Hopefully its always worthwhile.

By the way, if you want the photo to size down a little bit so it doesnt 'stretch' the browser window, go into photobucket, click the edit button over the photo, and theres an option to resize the photo to 25/50/75% of original. Try 75% and then recheck the post...the photo will be smaller. If it still doesnt fit, do 75% again until it just sneaks into the frame size. Took me a few photos to notice the options.

 

[cabbage]

This topic has made me finally register to post after months of lurking. When I was 19, I got a job in a children's specialty shoestore that was the only one in Cleveland that specialized in "handicapped" kids. I saw at least 5 Down's kids a day along with their parents of course. One day a teen-aged looking Down's kid came in with his court appointed guardian. We had a caged Capuchin monkey in a circus cart named Ringo and a helium balloon tank alongside. This teen-aged boy asked if he could have a balloon and I obliged. While he played with Ringo, his guardian stood at the counter writing a check for the shoes. He said to me, "I bet you don't give many balloons to 55 year old men." (meaning the man I had thought a boy) He then said "I am the legal guardian for a dozen adults with Down's and I will tell you this, God has put them on earth to show us 'regular' people what pure innocence is and how we treat them is a test from the heart of God." I have never forgotten that day, or that man, or that boy.

 

[laurence]

Sweet! Thanks TH!

 

[brewer12345]

Laurence, I was absolutely dead tired when the baby came. Of course, my wife went into labor less than 24 hours after I finished the level II exam for the CFA (high stress event requiring months of intensive study), so I suspect it had something to do with my non-baby activities.

 

[LovesLife]

Laurencewill

You add an immeasurable richness to this community.

LovesLife

 

[Dreamer]

Laurencewill,

I think that you looked pretty good also. I looked alot worse than you did after my first, but I was the one that had him!! I was very lucky and had easy times with both of my children. Keep on hijacking your posts.


Cabbage,

Welcome to the board. That was a great post! Thanks for sharing that story. Isn't it wonderful that a simple statement made by a person can stick with one all of their life and can be passed on to others.

I agree that there are special people in the world who have such joy in living and have such an innocence all of their lives! I too think that they are God's special children, no matter how old they are.

I hope that you continue posting!

Dreamer

 

[laurence]

Welcome Cabbage, quality always beats quantity, thank you for sharing!