DownSyn Forum

liuxiaohong · Posted: February 02 2003, 1:58 AM Post subject:

Hello£¬I am from China¡£By a chance I find this web¡£Although my English is not well ¡£But for my daughter I come here ¡£I think I can get help from the peasants who have the same exprence ¡£My baby is 12month ¡£she has Down syn . After many months sad .Now I make my mind to train her using different ways . But I don¡¯t know how to do .I also don¡¯t know what medicine can help her. In fact ,in our city there is no school for this kind children. No doctors do any research on these patients .Every time when I think my daughter¡¯s future .I can¡¯t sleep. I worry all the time.

Amy Jensen · Posted: February 02 2003, 9:16 AM Post subject:

Hello Liuxiaohong,
Welcome! I am glad you came to this site and I hope you can find help for your daughter. I am sure she is beautiful. Do you live near any major cities? Some large hospitals have Down Syn clinics. There are also developmental pediatricians and geneticists who may be able to help you or guide you. Websites like ndss.org or http://www.dshealth.com may also help you. Keep surfing the web and hopefully you will find a group in China that advocates for children with special needs. I can't think of anything else to offer you in that area, but we on this site are always here to listen and support you. Hopefully some others here have ideas and can share them with you. You are not alone, even though it might seem so. Please write back with any questions or worries and we will do the best we can to help.
Amy

Vicki H · Posted: February 03 2003, 8:03 PM Post subject:

Dear liuxiaohong, my heart goes out to you and your treasured daughter.

I understand the language barrier, sensorship and lack of support and understanding you have to cope with. I have a friend who is in China at the moment who may be able to organise some books ,information on Down syndrome and physical therapy which may help you, hopefully in your language. Let me know if you would like this.

You can email me if you would like further contact. Dont feel like all is lost. Our children are not normal but they are beautiful in their own way, and the life you will live from now on will be full with small but very important miracles.

Get some books or look on the internet for information. This will help you understand what to expect and what to do. There are lots of options in treatment.

My Reggie is very well physically. He is 18 months old and growing well. He has just learnt to stand holding onto furniture and comando crawls wherever he wants. I feed him mashed food with small soft lumps and the occasional piece of toast and Vegimite which I try to encourage him to hold himself. He doesnt always cope well with feeding and he doesnt put things into his mouth much himself, but it is getting better. He says, Da, Da and Ma, Ma, and waves and smiles at everyone and everything. He is very alert and active. But I have take him to therapy as often as I could,(monthly) and encouraged him and stimulated him. I have decided not to go into the vitamins, diets or cell therapies etc avaliable, and stick to just physically therapy. I believe God gave me this child and no matter how much I may like things to be different he is not going to be "normal" ever. I will do everything in my power to extend him to achieve the best in life he can but I will not chase around after every miracle cure trying to make him into someone he isnt.

I was very lost and alone when we found out he had Down Syndrome but I educated myself and with the help of therapists, my determination and the Grace of God we keep going each day.

Love Vicki & Reggie

Suri Izuati · Posted: February 04 2003, 3:30 AM Post subject:

Maybe you could try and get some signing language materials from teachers for Deaf children...and start signing to your daughter. It is a good way to encourage her to talk and communicate.