DownSyn Forum

Seven · Posted: January 30 2011, 3:47 PM Post subject: Newbie GB in BG

Hi all,

I'm am hoping to hell that this site will help my family moving forward. My partner and I are British, however we live in Bulgaria.

I have a fantastic 13month old son Matthew and a few days ago we finally got the blood results back to tell us he has DS. I had been preparing for this news for about 2 weeks and so did my research. I am going back to the hospital on Friday to pick up the results, which I hope will tell me what type he has, as to my shock and horror being told on the phone that there is only one type sent the alarm bells ringing.

Bulgaria has a long way to go to being bothered about those that aren't 110% perfect and killing off or putting babies into institutions for life is still practiced here. However, there is a lot of good that is done, so please don't think it a bad place to bring up a DS child or any child.

The fact that it took the doctor 12 months to decide that they felt that Matthew needed to be checked when it turns out she had concerns at 6 months made me mad, but thankfully no damage occured.

I've been searching the net again and again for more and more info on DS, but in just a short time I have found that there seems to be limited research done on development of DS babies due to the negative attitudes that allowed them to be dismissive to the possibilities of these children.

So any help will be most welcome as it feels like we are in a bubble here with no help at all to date.

Oh.... I'm also pregnante again and going in on Friday for my 17 weeks test.

AliMama · Posted: January 30 2011, 4:26 PM Post subject:

Welcome! It's great to have you here! I'm sure it must be quite a shock to be dealing with all this now. I have learned a little bit about how it is for children with disabilities in Bulgaria through learning about Reece's Rainbow. It's great that your son has a family who will help him live up to his potential Smile

DownSyn is a wonderful place--it's a family of supportive, well-informed people. Hopefully you will find it as helpful as I have. There is always someone who can answer your questions or to help point you in the right direction for more information.

_________________
Maresa,
Mom to Alisa (10-29-2008) DS, complete AV canal repair on 3-6-2009

naomid · Posted: January 30 2011, 5:11 PM Post subject:

Welcome

There's a sister organisation to Reece's Rainbow called Connecting the Rainbow that is more of an outreach program.

Here's a link to one of their blog posts that you may find useful http://www.connectingtherainbow.net/2010/07/volunteers-needed-trip-to-bulgaria-and.html

_________________
Naomi
Mum to Callum (DS) 3/03 and Kieran 8/04
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Edensmama · Posted: January 30 2011, 7:12 PM Post subject:

Hello and welcome to Downsyn. It's great that you found this site. It has been such an amazing source of information and encouragement to so many!! We are happy to try and answer any questions that you have and also to just listen if you want to vent.

Hugs to you and sweet Matthew. Hoping to see pictures soon! Smile

_________________
Nathalie
Mom to Eden (DS) 4-13-08
Wife to Luciano (the best daddy in the world) since 10-8-2005
www.caringbridge.org/visit/edensalem

Momtoseven · Posted: January 30 2011, 8:07 PM Post subject:

Hello and welcome to downsyn! Congratulations on your son, Matthew and congrats on the new little one on the way! If you are looking for some good advice and great friends this forum is the right place!! Looking forward to hearing more.

_________________
Maureen - Mom to Daniel(24), Brandon(22), Jordan(16), Thomas(14), Carrie(10), Samuel(7) and Mark (4)
https://www.carepages.com/carepages/MarkEdwardC32708

lespring · Posted: January 31 2011, 12:58 AM Post subject:

Hello and welcome to Downsyn!!!! I'm so glad you found us! I, and my friend Shelley, were in Bulgaria in April, speaking to parents of children who have DS. Did you know there is a DS association in Sofia? And, as someone above posted, there is a conference being put together for the end of March.

Here is a link to the Bulgaria DS association
http://www.downsyndromebg.com/en/downsyndrome

While Bulgaria and many of the Central and Eastern European countries are behind the times as far as caring for children with DS, things ARE improving! Get in contact with the organization above and they'll be able to connect you with other families.

Again, I'm so glad you found us. I can't wait to see pictures of your beautiful son. And, congratulations on your pregnancy!

_________________
~Leah~

My mom's blog
http://gardenofeagan.blogspot.com/

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Rob 26, Noah 25, Tyler 23, Bryon 23, Angela 16 (DS), Axel 12 (DS, adopted from Serbia 12/2012, AAI w/fusion) Asher 7 (DS adopted from Serbia 12/2011, AAI non-fusion)

shele337 · Posted: January 31 2011, 8:37 AM Post subject:

Hello,
As Leah mentioned, there is a conference planned for March 19th in Sofia. I will be there, along with several others. The parent support group in Sofia is wonderful. They have members from all over the country. Valentina is the president of their organization and she will email you back quickly with information. Also, there is an American family that lives in Sofia that also has a son with Down syndrome. I can put you in contact with them as well, if you'd like.

What part of Bulgaria do you live in?

_________________
~Shelley~
mom to Jakob(11), Olivia(8 ), Kullen (7/Ds)
Grifyn(7/DS), Xander(7/ DS & ASD),
& Zoie(5)
www.only1mom.com

downmommy · Posted: January 31 2011, 2:38 PM Post subject:

Welcome to DownSyn! You will find a lot of love and support here.

_________________

earlyam · Posted: February 01 2011, 1:56 AM Post subject:

Hi and Welcome!

_________________
Jo, Mum to Georgia 11/11/03 ( BIG High School Musical fan) and Ethan 16/12/07 (DS)

Seven · Posted: February 01 2011, 6:18 AM Post subject:

Hi and thanks for your posts of support.

We live in the Veliko Turnovo region, but up in the mountains a good 1.5 from the city. I'd be greatful for any contact with other ex-pats with DS in Bulgaria.

Many thanks

Tigger · Posted: February 05 2011, 12:42 AM Post subject:

Hi and welcome to downsyn!! Glad you found us because there is a wealth of information here and wonderful support! That has been my experience. Very Happy

_________________
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

TheBradyBunch · Posted: February 05 2011, 1:36 AM Post subject:

Hello and welcome! This site is an online family really! Welcome to the fam!

_________________
Mom to: Nicholas (May/02), Nathan (April/04), Charlene (June/06), Noah (DS, ASD) (May/07), Jesse Lynn (July/08 ), Tessa (Apr/10), Kaitlyn (Jun/12)

"Sometimes the things we can't change end up changing us"

Excalibur · Posted: February 05 2011, 5:49 PM Post subject:

I spent a few weeks in Bulgaria, it's beautiful!
At this stage, unless there are serious health issues, I wouldnt worry too much about the diagnosis; just treat your child the same way as any other. Professionals just seem to feel a need for intervention: thats what they do. All the evidence seems to be showing that our kids usually thrive on inclusion, and that there are no catch-all therapies that really demonstrate any benefit at all. That said, I wouldnt ignore any hearing checks, thyroid tests, vaccinations or general developmental assessments: they can be helpful in identifying early problems and treating them.

_________________
There is a theory which states that if ever anyone discovers exactly what the Universe is for and why it is here, it will instantly disappear and be replaced by something even more bizarre and inexplicable.
There is another theory which states that this has already happened.