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Comments = I actually have many questions for someone who has more years of exposure and experience than myself about a lot of issues.  But I am especially curious if anyone has had their child diagnosed with an autism spectrum disorder.  My son is 6, they say cognitively between 2-3 years, in kindergarten, with Down's and some unusual behaviors that they say is developmentally age appropriete.  I am disagreeing.  I think he is closer to four years old, understands more than what they think, but does not talk well at all and what he does say is not clear. I know some behavior is from frustration...but that does not explain the behaviors he has when he is not frustrated.  HELP!

Hi!  I feel very proud to be able to talk to you wonderful people.  We are very blessed with our special angels.  I don't have any requests, just to compare different steps of other children.  My little angel is 3yrs.  I had a feeling long ago I was having a Downs.  I fell in love with one many years ago, and wished for one of my own.  I was over the moon to recieve one.  All my children have a dissability, ranging from   diabetes, asd, compulsive behaviour, speech and language disorder and autisim.  I too have 3 boys  then blessed with Emma.  My husband left us before she was born.  My Mother had passed away 3 yrs before this.  My sister helped with the kids.  But a very special bond was formed with Emma.  She could see nothing wrong with her.  My other 3 brothers were not so impressed.  They said she should not have been born.  I shrugged it off like many things you hear-and you will.  But once they nursed and got a smile, they had different thoughts real quickly.  They were afraid of not knowing what to say and do.  I still don't have much to do with my family, but I've been always left to look after my own kids without a break.  I don't get respite care.  The kids won't leave without me.  One thing I'm interested in hearing some of your points of views, would be when our angels get older, have you thought about a special home just for downs.  My friend has a brain injured boy, now 23.  He lives with another boy in a shared home with 24hrs care.  I myself, will give Emma the choice if she would like to give it a go, but I'm more than happy to have them all stay at home.  Emma is our shining star day and night.  I would've loved to have twins.  I have no problems with her at all.  Her heart is good, she eats well, trained herself to go up and down stairs. 
She is fairly well behaved, until we have to go to bed.  Tiredness is a big thing for her.  She still sleeps with me and soon we will be in our own bed.  She also hates brushing her teeth and hair.  Any suggestions on that one would be appreciated.

Best wishes and a Merry Christmas to all.

 Hi, i have a daughter Millie-Ella who was 5 in June. She has Downs Syndrome along with translocation of chromosome 3! We have managed as parents on our since Millie was born, but have found life difficult over the past 12 months, we are trying to find some local supprt groups so that we can look to meet other parent's with Downs children, we would love to talk over their experiences and find out how we can support our little girl and be able to manage her again. Your help would be much appreciated. Zoe x

My brother is a 41 year old with down's.  If anyone , especially new parents, would like to chat about our experiences with Nathan, please feel free to write.

Hello. My wife and I are expecting our 1st child in april. My wife has Mosaic DS and so I am looking for some/any infomation. Other DS or MDS people that have had familys?
Thanks.. Rick

I have a 16 yr. with downs if I had to do this  all over I would not change a thing she is my little piece of heaven

what a fantastic and inspirational story.I have two lovely children who have downs syndrome.They certainly change your life,but in a positive way.I grew up always wanting children,unfortunately it didnt happen.Both my children are adopted,they are wonderful.

 I have an 18 month old daughter with DownSyndrome and she is the light of my and our families life. We thought our world had been turned upside down when we found out she had the condition, but instead our life has improved dramatically, even my husband and I have found renewed love and respect for one another and I owe it to her being in our life. Not one day is ever taken for granted, and every milestone is cause for celebration thank you for your pages of support and encouragement for our families.

I live in the US and have tried endlessly to get some help for a dear friend of mine. Her daughter has Downs Syndrome and we are having a difficult time finding a program that will help us.

She is now 11 years old, but her speech is underdeveloped.  There are times when she will talk, but not consistently.  Her behavior is good, but we just cannot seem to find the right program here in the states for her.

Do you have any suggestions. Kurtney is a gifted child, but we need desperately to find the right program that will assist in her development.

 when i had alex i was so sad that he was going to be so ill. i was told he had a hart defect and blood disorders he was coverd in bruses and had tubes comeing out of ever where. he.s now 4 month old and back in hospital. but i would not swap him for any thing he has made my life so full ... i love your web site it was the best i found its not all doom and gloom  keep it up

Dear Sir/Madam,
I thought I would drop you a line to let you know about my site:
http://www.ds2005.com
When my daughter Billie-Jo was born, I had read that 1-2 children are born everyday (on average)
with Down Syndrome, in England alone.
To represent this statistic I have photographed 365 children, aged between 5 and 10 years old, one for everyday of the year.
The photographs not only represent this statistic, but also illustrate the individuality and character of our children.
We have exhibited the images and they will be on permanent display at the John Langdon Down Centre,
which is now the English Down Syndrome Association HQ.

The reason I am writing though, is because we have produced an A3 quality fundraising calendar for 2005,
with all 365 children, which is on sale through the ds2005 website.

I hope that you might be able to tell your members or even put a link to it on your site.
If you would like any more information please call me on : 07956 971 520
Thanks and keep up the good work.
With best wishes
Richard Bailey
To view this lovely site visit: www.ds2005.com then click your back button to return

 I found this page while researching Down Syndrome for a reasearch project.  But I didn't choose D.S. at random.    My older brother, Alex, is a 27yr old man with Down's.  My family has always made a point to introduce Alex to everyone, and to promote education, tolerance, and understanding about D.S.  I would love to join you, and would be happy to provide any assistance I can to anyone new to Down Syndrome.  Thank you!

 My daughter Traci is 6 1/2 year old with Downs.  She will not chew her food, but just moves it around in her mouth until she swallows it.  I was wondering if anyone else has ever had a similar experience.  Traci's therapists and I are working on helping her chew, but it just isn't happening yet.  Thanks for any help or ideas.

Dear Pam,
I do volunteer work with a quadraplegic down's syndrome woman. 
Although she also cannot speak, she is very intelligent and can
understand several languages, and can communicate by shaking her head and to some extent moving her arms.  She has recently received a motorized wheel chair that allows her more freedom of motion. 
I am hoping that you or one of your readers can help with a problem that has grown considerably now that she can move around outside more.  She is constantly surrounded by house flies that land on her face and lips -- when swatted at they only distance themselves a short distance and then return. 
Is there a human-safe fly repellent that she can use or another
tested method for dealing with the problem?
Thanks.

I am a proud father of Two Years Old Nurul Iman.  Eventhough she is a Down's kid, but in a reality she is the UPs kids for me .... She is my inspirations and my link to the spirittual world ....

Comments = my child is 3yrs 2 months but still doesn't say except few unclear words. We've done speech therapy irregularly since she was 1 year. We are bilingual. Anybody can tell me about their experiences. How did you manage school? Anybody went to inclusive schools?

Comments = I would like to be included as a mother of a 16 year old with Down syndrome. His name is Agustin but he likes to be called Gus. He is the fifth of six siblings.
Anything helps. we are very fortunate he never had serious health problems, he is quite independent and loves basketball. He can read and write and is quite good at math. He goes to private school. He just started to train for a special olympics swim meet next summer and is part of a bowling group. He is the best thing that happened to us.

I am keen to buy a christmas present for my friend's son who has downs and
hoped that you could recommend an appropriate education gift for him
He is 16 months old and is happily sitting up and getting himself onto his
knees but no clear signs of walking just yet so I don't want to get
something that is too advanced for him.
Any idea or website address would be fantastic help.
Many thanks
Leigh
ps. it is great to see such a positive UK website

Comments = Hello, we have wonderful daughter called Sunita who is aged 9. As parents we decided that from the point that we found out that Sunita was a Down Syndrome child we would treat her just as a normal child as much as we possibly could. So far Sunita has grown up to be absolutely wonderful child which we both love very much. Currently she goes to a normal primary school and is one year academically behind her peers. As parents we are naturally concerned about her future and we currently thinking that it would be best if we put her in a special school for her future development, but are currently unsure. We would appreciate if people could email us there experiences/advise. Thanking you in advance, parents of Sunita.

Comments = i would like to know if many parents go through the no sleep stage? my daughter is 9 abd normally sleeps quiet well but just recently wakes about 3 times during the night? any ideas how to cure this as we are both absolutly shattered!

I have a son with Down Syndrome.He is 6 years old now and on special ed class.  My concern  is he doesn"t eat  much food, except for bread;He wont eat
vegetales,etc. So, Iam just ,still, giving him pediasure milk as his supplement.

 I HAVE A DAUGHTER 15 MONTHS OLD THAT IS A CHILD WITH DOWNS.
SHE IS THE LIGHT OF OUR LIVES.
I WANT TO KNOW EVERYTHING IN MY POWER TO KNOW HER, UNDERSTAND HER, AND HELP HER.
I ALSO WANT THE BEST FOR HER AND OUR FAMILY.
THANK YOU.

Dear Pam I dont know what to call the subject of this letter. I am very emotonal right now .My daughter & husband have reached the end of their tether with 12 yr old Jesse who has Downes- classified mild. they have had him taken away to be fostered .I am not coping emotionally -I completely understand their stress -hes been in trouble  a lot at school lately they never seem to get much good news I wish these trained people would just understand what parents are going through & deal with it & keep it to themselves so parents can really have a rest from an already difficult situation while they are in the care of others . I have a chronic and debilitating illness myself  & also have a 13yr old son whom I have been home educating for 8 yrs -I am 50 my daughter is 33 -I have 5 children only 1 left at home  6 grandchildren I am limited in the physical help I can give but I have had him the last 2 weekends .She gets respite care once a month & has someone help wth the housework .Jesse has a twin sister & a baby sister  .I cannot bare to think of him fostered out he is flesh of my flesh and bone of my bone I keep crying & wondering if with Gods help I could take him on .Is anyone out there in a similar position (all the stories seem so nice so whats going on here ?)Regards

27th Sep04

For all our American visitors:
October is DS awareness month, so please check out www.buddywalk.org and find a Buddy Walk near you!
I would like to have something similar in the UK, anyone any ideas on setting it up? Pam

hi i am a student at huddersfield university, and i have a friend with a daughter lauren with downs , i am doing a project as part of my studies on children with downs i was wondering if you would be ale to tell me where i can get infromation on the way society treated these children in the 1940 untill they were stopped putting these childen into institutions. i would really appreciate all the help you could offer thankyou jan

17th Sep04

16th Sep 04
Hello,
I am searching for any material on step parenting a child with
downs.My daughter is 11 and from my first marriage.I am going on 3 years with my wife now and issues have arisen between my daughter and my wife. Most of them are acceptance issues between them.It gets frustrating trying to define the communication level for my daughter and at the same
time be there for my wife too.Anything out there will help.I love my daughter with all my heart and I  want nothing more than to have my wife and daughter accept one another.
Have a blessed and safe day.

Sep 16th 04
Comments = I am a stepmother and legal guardian of a Down Syndrome person.  My son Stephen is 49 years old.  Stephen has had Down since birth.  Stephen had been working  in a workshop for 25 years and decided to retire two years ago.  We feel (my daughter and family friends) that something happened that made Stephen stop - no motivation, no interest. he had perhaps reaching his limit in that environment.

My question is this - is there a group of Drs. in the New York area that are interested in seeing Down Syngrome, have compassion and knowledge about this population?
Sincerely,Maureen.

PS:  I am a full-time working mother, Stephen lives with me.

 I am a grandmother who has an 11 year old grandson who has Downs Syndrome.  This is his first year in middle school; and he isn't adjusting very well.  Up until now he has done okay; but this year is especially hard for him.

He is a kind loving person but is very impressionable.  He gets into trouble all the time at school.  He is in sixth grade at about a second grade level--public school.  His mother, my daughter, is completely stressed out.  She is a secretary at his school and has a very stressful job, in addition to dealing with Blake's school problems.  She and her husband are strict displinarians but aren't sure how to handle discipline for Blake.  They have a 16 year old, above average child, who has never given them any problems.

My questions are:  What is the best way to deal with a child who has downs syndrome and is getting into  trouble at school, involving other children?  Also, do you know of a Christian psychologist who can advise my daughter and her husband on the best way to discipline our little Blake.

We love Blake and want the best life possible for him.  Any help you could give us on this would be most appreciated.  Perhaps you know of someone who has a child about Blake's age who has Downs Syndrome and they could give us some direction on this.

Have a blessed day.

9th Sep 04
I have a son with Down Syndrome. He is 16 months old. He makes my life so much fuller and brighter. I also have 2 other sons. We knew before he was born that there was a possibility that John would have Down Syndrome but that does not matter to us. We love him with all our hearts.

Message_Subject = reason there is downs from a downs person.

Comments = I have had the wonderful oppertunity to work and coach and live with Downs Syndrome (DS). I used to coach the Special Olympics softball team in Oregon, along with being a trainer for 'challenged' people in Utah. However, the most significant exposure I have had to DS is my Uncle Jim. I dont go a minute that I dont thank God for him. Well anyway, here is a story from one of my best friends in Utah that has DS explaining why we have DS. (Please bear with me I am typing this from memory.)

Have you ever wondered why we have Downs Syndrome in the world. A world that was built by someone so perfect, how could he make a mistake like Downs Syndrome? Well he didn't make a mistake. I am just very lucky. 

Up in heaven before the earth was made and all of us were there with our father, God came to us asking what we thought bout his idea of earth. We all started talking about it and really liked the idea of earth. Then a person in the crowd came up with an idea that would add to Gods plan and make it 'perfect'. The idea was to make earth and have each of us take our time on earth. During our time there we would be forced to do what is right so we would come back to heaven and be with our father again. 

Talking again continued and that is when God stepped in and said that would not be a good idea. We are not to be forced into doing the right thing. We should have our freedom of choice and in turn we would then have earned our place in heaven next to God. 

Those that could not decide which way stood off to the side and let this 'person' and God decide it. Some of us knew that God was right and stood by his side through it all. Then this 'person' started a fight with God in heaven. God knew he had to cast this 'person' out of heaven. 

God turned to those of us that stood by his side and asked us to take him out o heaven. We all turned to the other person and took Lucifer out of heaven. The entire time we were taking him out he was always telling us his way and telling us to follow him. Those of us that took Lucifer out of heaven came back to God and told him what had happened. God in turn turned to us and told us "I will give you your time in earth. But I want you to come back to me. I am going to have you be mentally challenged. Then you can not be held accountible for your actions on earth. 

That is way we are Downs Syndrome and we love it!

Like I said before, this was written by a very special person I know that could not write before that night he wrote this. I love Robert and am so thankful that I got be his trainer in Utah and have him teach me.

Kris

Lisa

6thSept 04
Hi, we first found out Jodie had Downs as soon as Jodie was born.  At the time it felt as though our world had ended, but it didnt take long for her to change our minds !  She is now nearly 2 and is still tiny (only 15lb), but just as cheeky as her 4 year old brother.  She is not able to walk or crawl yet due to problems with her legs but she will get there when she is ready !!  Jodie has the biggest smile in the world and it touches everybody that sees her. 

6th Sept 04
I am a parent of  a 4 year old boy with down syndrome and desperately need help with discipline and potty trainin.

6thSept 04
 I would really love to become part of your group. Since having Syrena, now 4 my whole life has changed. I am more than honored to have a daughter with Downs.

6th Sept 04
my sister was born 3 days ago w/ downs and she lives over there!  i can't wait to see her next month, but i want to know as much as i can when she gets here!

6thSept 04
I have a child with Down Syndrome and I would not change her for any amount of money.  She's all mine to love for as long as I live!  I'm so thankful for unanswered prayers!

I would like to becom a member and would like more information on your program.  We have just began Kindergarten and are facing some hurdles.  We aren't active in our local chapter of DSA, but are working on that now for the support system and some much needed advice

6th Sept 04
Hi!  I've got an 11 day old neice, Claire, who has downs, we did not know in advance of her birth, so it's been a bit of a shock.  I'm researching, researching, researching, while my sister recovers from a difficult pregnancy, delivery and c-section.  I'm trying to find any and all information that will give Claire every advantage...  You've got a great site!

Sept 6th 04
I am a father of a new born child) with Downs Syndrome. Sir, can you give me the cause of this disease and the treatment. What about the medicine MSBPlus V6. Pls help me giving the details. Thanks

Sep 6th 04
There are a lot of new members emailing for information on schools in different areas that have the best resources for our children, I am trying to find out if such a list exists and if not , how to compile one, so please bear with me for a while.

One email is particularly interested in schools in the San Diego,CA.US as her friends little girl is having problems finding one suitable, if there is anyone reading this with any information please email pam@theupsofdowns.com

24th Aug 04
A member is looking for organisations & playgroups in the South Lanarkshire area, if anyone can help please email us

16th Aug 04
A member is looking for a holiday home ( pref caravan) that has an enclosed garden for her energetic four year old little girl. If anyone has any suggestions please email us at above address...

16th Aug 04
We are currently looking for a venue for a regular meeting place in the Wigan or Leigh area (Lancashire) for families with children with disabilities, that could be used for mother & toddler groups, discos, birthday parties etc. any suggestions
email us....