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03-01-2020, 01:11   #1
MIN2511
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New born diagnosed with down syndrome - looking for resources

A friend's son has T-21 (down syndrome), he's her second. She's overwhelmed and shocked. I'm looking for resources, stories and guidance:
  1. Where do they start from?
  2. What resources are available to them?
  3. What childcare options can they avail of? Creche? Would he have to go to special needs creche?
  4. Suggestion/tips for adjusting to life with a child with T-21.
  5. What can she expect, and plan for?
  6. Are there families with T-21 children, where parents work? Do both parents work? What compromises have been made?
  7. Any other tips for this overwhelmed and in shock mother?

Thank you very much in advance.
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03-01-2020, 01:22   #2
Not in Kansas
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Quote:
Originally Posted by MIN2511 View Post
A friend's son has T-21 (down syndrome), he's her second. She's overwhelmed and shocked. I'm looking for resources, stories and guidance:
  1. Where do they start from?
  2. What resources are available to them?
  3. What childcare options can they avail of? Creche? Would he have to go to special needs creche?
  4. Suggestion/tips for adjusting to life with a child with T-21.
  5. What can she expect, and plan for?
  6. Are there families with T-21 children, where parents work? Do both parents work? What compromises have been made?
  7. Any other tips for this overwhelmed and in shock mother?

Thank you very much in advance.
My main advice would be not to overwhelm the parents with too much information at this point.

The website downsyndrome.ie has lots of resources but it's best at this very early stage not to think too far ahead and to let the parents get to know their beautiful baby. The information and resources will be there when needed.

For what it's worth, even as far back as 30 years ago my sister attended the local play school and national school but every child is different and that is what was best for her.
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03-01-2020, 01:24   #3
splinter65
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Quote:
Originally Posted by Not in Kansas View Post
My main advice would be not to overwhelm the parents with too much information at this point.

The website downsyndrome.ie has lots of resources but it's best at this very early stage not to think too far ahead and to let the parents get to know their beautiful baby. The information and resources will be there when needed.

For what it's worth, even as far back as 30 years ago my sister attended the local play school and national school but every child is different and that is what was best for her.
Very good advice.
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03-01-2020, 01:33   #4
Fringegirl
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Quote:
Originally Posted by MIN2511 View Post
A friend's son has T-21 (down syndrome), he's her second. She's overwhelmed and shocked. I'm looking for resources, stories and guidance:
  1. Where do they start from?
  2. What resources are available to them?
  3. What childcare options can they avail of? Creche? Would he have to go to special needs creche?
  4. Suggestion/tips for adjusting to life with a child with T-21.
  5. What can she expect, and plan for?
  6. Are there families with T-21 children, where parents work? Do both parents work? What compromises have been made?
  7. Any other tips for this overwhelmed and in shock mother?

Thank you very much in advance.
They will need time to get to know their baby and absorb everything before leaping into all of the above.

Down Syndrome Ireland would be a good place to start, plus they can meet other parents in the same boat and this can be very beneficial and encouraging to see how their child can have a normal happy childhood and achieve their best.

People with Down syndrome can enjoy long, happy and healthy lives. A number of children with down syndrome where I live attend mainstream preschool, primary and secondary school.

Only time will tell and only then can decisions be made about what's going to work best for the child.

Some have full SNA support others have regular learning support. Like all children, individual abilities will vary so they may need a lot of extra support or maybe not so much.

The likes of childcare/working etc will depend on the family situation like any other family welcoming another child it will be what works best for them.

Last edited by Fringegirl; 03-01-2020 at 01:44.
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03-01-2020, 13:44   #5
frash
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From personal experience Down Syndrome Ireland will give her a few leaflets & send you on your way.

You didn't say where your friend lives but if they're in Dublin then I'd recommend the Down Syndrome Centre - if nothing else check out their website.

When your friend is discharged from hospital she'll be referred to the service in her area be it St. John of God's, St Michael's, Enable Ireland or whatever depending on where she lives. They will be her main source of early intervention for physio, speech & language and the like but all that is down the road. For now I'd recommend she just gets used to the baby & her new unexpected situation as others have said.
Talking to other parents who have gone through it will help.

In the meantime there's a large Facebook group that she should consider joining if for nothing else then to have a read - she doesn't have to post anything if she's not there yet.
"Raising a Child/ Teen/ Adult with Down Syndrome in Ireland"
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03-01-2020, 20:51   #6
MIN2511
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Thank you everyone for all of your replies. To point out, my goal isn't to overwhelm her.
She is currently not in a good spot due to the shock, the complication with the birth etc. She feels and has said that her life and her dreams are over and is worried about the impact on her family, career, and other children. Hence my original questions.

Please keep the suggestions coming, thank you.
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04-01-2020, 01:57   #7
fits
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Just give her some time. It is a huge thing to come to terms with and it can be difficult enough to function without worrying yet about school etc. A day at a time is all she needs to take right now. Soon she might find it helpful to meet other parents of children with DS.
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04-01-2020, 02:49   #8
 
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I've worked with different kids who have down syndrome and they are a day of sunshine. It will be a shock for her but in a few years time she will wonder what she was worried about. Will take some adjusting but will definitely be worth it.
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05-01-2020, 07:49   #9
fits
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I've worked with different kids who have down syndrome and they are a day of sunshine. It will be a shock for her but in a few years time she will wonder what she was worried about. Will take some adjusting but will definitely be worth it.
While this will probably turn out to be true I don’t think it’s necessarily helpful toa parent of a newly diagnosed child. I went through this myself this year. Not DS but comparable. It was I think the most devastating news I have ever had to come to terms with. All my hopes and dreams for the future changed overnight and our family have had to adjust to a new reality of early intervention teams, hospital appointments, special education, advocacy, financial planning, worrying about potential exclusion and discrimination. etc. Everything changes. It can also put enormous pressure on a relationship as caring for someone with special needs can be all consuming. And then there is the financial strain it can bring on some families if one parent as to give up work.

My little boy is an absolute joy, but if I could cure his condition, I would in a heartbeat.

It is also a very lonely place to be as a parent. The only true understanding comes from others who have gone through it.

Last edited by fits; 05-01-2020 at 08:07.
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08-01-2020, 08:48   #10
frash
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How's your friend doing OP?
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08-01-2020, 22:25   #11
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Not to make little of the situation but I've just watched last weeks Tommy Tiernan show, it would be no harm suggest she did before it's deleted off catch up.
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