I
imroc
Guest
I’d like to hear about your experiences with your Down Syndrom child, from the womb to current.
- Status
D
Dmoneyshea
Guest
Hello, I have 3 children. 1 son without Down Syndrome and 2 little girls born with Down Syndrome. I was looking for information to help teach them about making their First Communion. It must be very simplified and a video or picture book would help them the most. My daughters are 9 and 10 and go to public school. My son goes to a Catholic school and is in the 6th grade. I wanted to wait until they were a little older for them to make their First Communion so they might have a better understanding of what was going to happen and what it was all about. Thank you!
I
imroc
Guest
My wife and I have 6 children (5 girls & 1 boy). We are expecting our 7th child and had an ultrasound last week. We were happy to hear our lil one is going to be a boy! However, the doctor noted a lack of a nose bone and a ‘black’ spot on the baby’s heart. He stated these are ‘soft’ indicators of DS and we are going to have a thorough ultrasound this Thurs up in Denver. i couldn’t resist looking up these ‘soft’ indicators & found that the lack of a nose bone is a 'hard’indicator. We are trying to prepare for a DS baby, but we have absolutely NO experience with anybody or child with DS. I’m sure there are great agencies & groups out there, but we live in a small rural community in the mountains & the closest city is about 2.5 hrs away
H
hsmomforlife
Guest
Yes, yes and yes…but I’m too tired to post too much.
imroc - please be more specific…my daughter is almost 10 years old and I could write something as long as War and Peace or answer specific questions…
Dmoneyshea - maybe you should start a separate thread about Suggestions for First Communion for Children with Down syndrome?? I have a few ideas, but I don’t want to hijack/sabotage imrocs post…
imroc - please be more specific…my daughter is almost 10 years old and I could write something as long as War and Peace or answer specific questions…
Dmoneyshea - maybe you should start a separate thread about Suggestions for First Communion for Children with Down syndrome?? I have a few ideas, but I don’t want to hijack/sabotage imrocs post…
S
Symeon
Guest
imroc, congrats on your new little one.
I have an 8-year old daughter with Down Syndrome. As someone else mentioned above, one could write reams in response to your question. Are there some specific concerns/worries you have at this point?
If your little boy turns out to have DS, you are in for both great joy (and yes some difficulties). But he will be a precious gift to your family.
One of the best places to read about what to expect would be the following website which includes lots of positive article from a Christian perspective: einstein-syndrome.com/
Feel free to PM me too with any questions.
I have an 8-year old daughter with Down Syndrome. As someone else mentioned above, one could write reams in response to your question. Are there some specific concerns/worries you have at this point?
If your little boy turns out to have DS, you are in for both great joy (and yes some difficulties). But he will be a precious gift to your family.
One of the best places to read about what to expect would be the following website which includes lots of positive article from a Christian perspective: einstein-syndrome.com/
Feel free to PM me too with any questions.
S
Symeon
Guest
I would encourage you to let your girls with DS receive communion as soon as is possible. At 9 and 10, chances are they can already distinguish the Eucharist from ordinary food, which is what the current discipline in the Latin rite requires. You could probably talk to the parish priest about preparing them yourself (under his guidance) if the usual parish first communion prep isn’t appropriate for them.
“Let the little children come unto me!” How much they understand is not so significant. After all none of us can fully understand the depth of the mystery of the body of Christ. The Grace of the Eucharist has the power to bring us into closer union with Christ nonetheless.
E
exoflare
Guest
I also have a question for any parents of DS children on here that I’ve wondered about. How do you go about planning that the child remains safe and well cared for once they’re grown up and you’re no longer around? If I were faced with a situation like that I think it would weigh on me pretty heavily.
H
hsmomforlife
Guest
Personally, since my daughter is pretty high functioning, and I don’t really have a sense yet of exactly what her future will look like (she’s only 10) and the fact that she has two brothers, I haven’t put much thought into ‘after I’m gone’ just yet. Once my daughter is a little bit older and I have a better idea of what types of things she can do to earn a living, I will put more planning into it, but right now, we are focusing on homeschooling and all that entails.
There are special needs trusts that can be set up to ensure that people with special needs are financially secure in their later years. As far as living arrangements go, again, I’m not sure where her functionality will be as an adult, so right now I am focusing on her academics and learning all of the functional skills that she will need as an adult (grocery shopping, laundry, cleaning, cooking…)
Just my quick thoughts…
H
hsmomforlife
Guest
Congratulations on expecting a new baby boy! If he does have Down syndrome there are a number of resources on the following website for people who are new to Down syndrome downinthesouthland.org/newtodownsyndrome.htm There are other great resources on the favorite books & favorite web sites pages…and the DVD Down syndrome the first 18 months (or something similar) is also a great DVD.
I hope this helps…feel free to PM me as well. I have some friends who have had a prenatal diagnosis and I’m sure they would be happy to answer questions etc.
H
hsmomforlife
Guest
Here’s a resource that I used: leafletonline.com/Sacrament-of-Holy-Eucharist/productinfo/02561/
And when my daughter made her First Reconciliation, I helped her (and Father!) by putting
the information below on a 3x5 card for her. Actually, the original plan was to have my dd read it, but that was stressing her out so much that I ended up giving it to the priest just before and explained that he could use it to help her in case she didn’t remember what she wanted to confess. (Actually what I said was 'Here are her sins…" and he looked at me :bigyikes:…I had to explain that it was incase she forgot what she wanted to confess!
) I also explained that because of her memory issues, she would need him to help her a little with her Act of Contrition. All he had to do was read each line as it was typed, and she would repeat it after him sort of like ‘wedding vows’ (I knew he would understand what I meant! 
) . He was more than willing to help her out…and even saidher penance with her! :extrahappy:
I had to change the first line from ‘Oh My God’ to ‘Dear God’ because of the look that she gave me when I told her that OMG was a sin, but then told her to say OMG to start the prayer…she looked at me like
So here is what was on the 3x5 card:
FRONT:
I lied to my brothers.
I lied to my mom.
(I said I washed my face when I didn’t.)
I said ‘Oh my God.’ Two times.
BACK:
Dear God,
I am sorry
for my sins,
because they hurt
your feelings.
You are good
and deserve
all my love.
With your help,
I won’t sin
anymore.
Amen.
I
imroc
Guest
First, my wife went to Denver & the specialists up there found that nose bone and determined the spot on our son’s heart was simply a calcium deposit. Considering my wifes age and having a thyroid disease, they’re doing blood tests. The docs are more worried about the thyroid issue than anything else. Which, to me is minimal because she’s had 5 kids since the thyroid issue. So, as it seems, our little guy doesn’t appear to have DS. There were a lot of prayers from everybody & perhaps even a miracle. All I know is, given the rough & unknown road traveled over the last week, there were some gut checks. If these events are not used to draw my family nearer to God, then I will fail them. I also believe that somehow, I may need to start contributing money or efforts to a local organization that specifically deals with DS adults & children.
Second, h(name removed by moderator), the OMG story was awesome, i LOL’d!
Second, h(name removed by moderator), the OMG story was awesome, i LOL’d!
S
skigirl1689
Guest
Glad to hear it is likely not DS, and it is great you want to help other families affected by DS. I personally have a physical disability I’ve had from birth and also have an aunt with DS. My advice to anyone who has a child with special needs is to plan for what happens when you pass. My grandpa died a few days before he was meeting with a lawyer and my grandma did not do anything in the intervening 12 years before her death. It caused a lot of issues but thankfully she is now living in a wonderful group home and she is happy.
S
sojo
Guest
Congratulations Imroc! Yes, I have a 16 year old with DS. We had a prenatal diagnosis. As someone else said, it would help to have specific questions.
In brief, Sam is the biggest blessing of our lives. He has turned out to be a wonderful person and he brings joy to everyone he meets. He earned his brown belt in karate this year, and loves to spar. He speaks English, Spanish and we are now in our second year of ASL (he learned baby signs when he was little). He also has finished elmentary Latin. He adores music (everything from opera to Justin Bieber), dancing, swimming (he rocks at the butterfly stroke), power lifting, basketball and power lifting.
Sam is in 10th grade, and we home school through Kolbe Academy. He loves biology, history and algebra (go figure!). He reads at about a 9th grade level and reads on his own for entertainment. He likes to ride horses and just adores animals. He has chosen on his own to be a vegetarian for ethical reasons, but eats dairy - thank goodness! Makes my job easier. He is also a master at making omelettes. He hates cleaning his room. He thinks he would like to work with animals when he graduates high school and he will be involved in a work study internship before he graduates.
Someone asked about First Communion. I did all the prep myself, and I took 2 years to do it. We modified some of the answers to the St. Joseph Catechism (small booklet). We used some hand signs for stuff like, "to know Him (touch forehead), love Him (touch heart), and serve Him (extend hands palm up) as cues. For the more involved questions, we used mutliple choice to quiz him. We had to take a 3rd year due to his oral sensitivities (largely gone now), but Father gave us unconsecrated hosts to practice with. We scheduled First Communion for an Easter Vigil and kept it low key in case the pressure made him chicken out, but he did just fine.
As someone else said, I could go on forever as Sam is so wonderful and we are so proud of him. He has made our life so much better than we could ever have imagined. He has some real challenges, but then don’t we all?
In brief, Sam is the biggest blessing of our lives. He has turned out to be a wonderful person and he brings joy to everyone he meets. He earned his brown belt in karate this year, and loves to spar. He speaks English, Spanish and we are now in our second year of ASL (he learned baby signs when he was little). He also has finished elmentary Latin. He adores music (everything from opera to Justin Bieber), dancing, swimming (he rocks at the butterfly stroke), power lifting, basketball and power lifting.
Sam is in 10th grade, and we home school through Kolbe Academy. He loves biology, history and algebra (go figure!). He reads at about a 9th grade level and reads on his own for entertainment. He likes to ride horses and just adores animals. He has chosen on his own to be a vegetarian for ethical reasons, but eats dairy - thank goodness! Makes my job easier. He is also a master at making omelettes. He hates cleaning his room. He thinks he would like to work with animals when he graduates high school and he will be involved in a work study internship before he graduates.
Someone asked about First Communion. I did all the prep myself, and I took 2 years to do it. We modified some of the answers to the St. Joseph Catechism (small booklet). We used some hand signs for stuff like, "to know Him (touch forehead), love Him (touch heart), and serve Him (extend hands palm up) as cues. For the more involved questions, we used mutliple choice to quiz him. We had to take a 3rd year due to his oral sensitivities (largely gone now), but Father gave us unconsecrated hosts to practice with. We scheduled First Communion for an Easter Vigil and kept it low key in case the pressure made him chicken out, but he did just fine.
As someone else said, I could go on forever as Sam is so wonderful and we are so proud of him. He has made our life so much better than we could ever have imagined. He has some real challenges, but then don’t we all?
I
imroc
Guest
Sam seems to have a wonderful life and family! WOW! I’ve done a lot in my life (not going into specifics), but Sam makes me want to let my kids experience more
thanks a lot
- Status