一位唐宝母亲与她的咖啡店A mother of Tang Bao and her coffee shop
在湖南长沙岳麓区的一个街角，有一家特殊的咖啡店，一些店员动作轻缓，娴熟地为顾客端上一杯热咖啡后，报以羞涩一笑。实际上，他们是一群唐氏综合征青年。2023年，为了帮助更多唐氏综合征孩子顺利走向社会，“唐宝”妈妈李秀芳联合其他家长开设了这家咖啡店。不少唐氏综合征家庭，在这家咖啡店找到了慰藉和希望，这里也让更多人看到唐氏综合征群体真实的一面。
唐氏综合征孩子降临之后
唐氏综合征又称为21-三体综合征或先天愚型，是人类第一个被确认的染色体疾病，多为偶然发生，也可有遗传因素。唐氏综合征孩子又被称为“唐氏儿”“唐宝”。主要特征包括特殊面容、智能障碍、生长发育迟缓和伴发畸形。
早年，李秀芳在长沙一家国企做技术工作，后来又转至财务岗。2002年，第一次迎接小生命的诞生，李秀芳认真做足了新手妈妈的功课，包括每一次三甲医院的产检，李秀芳都没有落下。
但当时对唐氏综合征等疾病的重视不如现在。很快，李秀芳刚升级为人母的喜悦被一盆冷水浇灭——儿子高瑾一个多月大时，开始表现得和其他孩子有些不一样，他被确诊为唐氏综合征。
这位坚强能干的女性，在此后孩子人生的每一步，她都用尽全力托举。
进入幼儿园后，高瑾不太擅长和其他孩子社交，还需要老师格外照顾。幸好，这家幼儿园的园长正在推行一种较新的蒙氏教育理念，并进行新的教学模式探索，即更尊重孩子个体需求，给予孩子更多自我表达的机会。小高瑾在幼儿园度过的时光，还是很开心的。
待到高瑾上小学时，情况略微有些变化。类似患有唐氏综合征的孩子，很多学校会直接拒绝。李秀芳没敢主动向老师坦白孩子的情况，但恰好碰到的老师家里也有一个患抑郁症的孩子，特别能感同身受，乐意照顾高瑾。
高瑾4年级时换了老师，李秀芳也有了第二个孩子，时间精力被分散。种种压力之下，高瑾被送到了特殊学校。不过，因为前期基础扎实，高瑾表现很优秀，特别配合老师。老师们也很喜欢高瑾，给了他足够的表现机会，他学会了担当，被培养得十分自信、乖巧懂事，在家会帮父母做饭洗碗，家务活做得相当顺手。
对孩子这一路走来遇到的贵人，李秀芳都非常感激，“我觉得他特别幸运。”
抱团取暖的家长
李秀芳自认性格执着，一旦认准要做什么事，就必须做好，力求精益求精。因为深知唐氏综合征家庭的不易，2013年，她开始召集唐氏综合征孩子的家长，准备成立一个面向唐氏综合征家庭的公益组织，抱团取暖。
“像我们这种关注孩子全生涯服务支持的，还是比较少。”李秀芳回忆，在当时，除了一些地方会提供小儿康复或成年后的日间照料中心外，他们这样专注为唐氏综合征群体持续倡导发声的组织，不仅在湖南省内是首个，在全国范围内也是屈指可数。
创办公益组织的初衷，是李秀芳无意中发现随着身边家长逐渐进入老年，孩子未来的托付成为这些家长心里放不下的重担。
2013年，李秀芳和其他家长发现外地有一些先进模式，也想复制到本地，给孩子们创造一些机会，家长们互相陪伴支持，给予彼此力量。他们也相信，大家凝聚的力量，能给孩子争取到更多机会。
2014年，唐果之家正式成立，这个名字是大家一起商讨出来的，因为不少唐氏孩子家庭都没有家的感觉了，“一个美好的愿景，希望他们都能有一个甜蜜的生活。”
家长们经常约在岳麓区的阳光一百小区聚会。一开始，是家长们带着孩子开展一些活动，再后来大家开始围绕孩子们的具体需求，开展一些议题性的倡导活动。因为国内也没什么经验可供借鉴，一切都是家长们自己一步步摸索、不断调整过来的，“给予这些家庭一些信心和力量，也给社会公众了解他们的窗口。”
在医疗方面，唐氏综合征的治疗并没有太大的突破和改变，所以，李秀芳关注更多的是特殊教育方面。在她看来，对唐氏综合征群体来说，社会环境的支持是最重要的。她也察觉到，以前社会对唐氏综合征人群的固有认知，还是有一定的局限。但随着孩子们的成长，近年来，公众对唐氏综合征的认知，社会环境对唐氏综合征群体的包容度正在逐年提升，令李秀芳这些家长们看到了一些希望。
母爱的托举
对孩子的爱，驱使这位母亲不断往前走。李秀芳和家长们精心设计了许多活动，比如在社区做自主生活空间，教孩子们做饭、搞卫生等，培养其独立生活能力。还有从青年阶段向成年阶段迈进，给孩子们做职业教育，让他们了解职业是什么，学习就职前的准备等，培养职业素养。
李秀芳说，家长投入了大量时间、精力、资源，帮助孩子们获得更好的教育机会。但到了青少年阶段，孩子们就只能回到家庭中，面临没有工作机会的尴尬境地。
李秀芳和几个家长一合计，决定开一家咖啡店，为孩子们提供实习与求职经验。几个家长合伙出资，亲自装修设计，就这样把唐果咖啡开起来了，“一个女性成为母亲后，为了孩子，再难的事，她可能都会去试一下。”
李秀芳说，孩子们来店里实习，店员除了从技术层面指导，还需要一个就业辅导员提供支持，加之店铺面积也较小，所以每次只能安排两个孩子一起，实习期三个月，店铺的运营后期就交给了一个小伙子。
李秀芳说，安排孩子们学习做咖啡，不仅是学习制作咖啡的职业技能，还想培养孩子们的一些基本素养，比如一些店铺的工作需要做逐步分解，孩子们也会认真记下繁多的指令。这些年来，孩子们自身也获得了不小的改变。
在媒体的镜头下，这家咖啡店装修简单，氛围格外温馨，糖果之家的家长和孩子们满面笑容地围坐在咖啡店里，店里欢声笑语不断。有的孩子在店员指导下，小心翼翼将咖啡端到顾客跟前，再轻轻鞠上一躬。
不过，李秀芳坦承，孩子们在培训结束后，能被推出去走向工作岗位的，也非常有限，但家长们仍在极力尝试。高瑾就找到了一份仓库管理员的工作，给了身边其他孩子和家长一份信心。
高瑾特别珍惜这份工作，虽然工作也会遇到一些小问题，但每天上班，他都很注重自己的着装，也非常享受工作带来的成就感。
2025年年底，高瑾这份工作合约到期后，又在一家企业园区做保洁工作，他依然很喜欢自己的工作。
“我更看重孩子们参与的机会。”对孩子们找工作的困难，李秀芳比较淡然。当下普通人找工作的压力都不小，更别提孩子们了。她一直尝试与社区联系，看能否开发或者找到一些灵活或者短期的工作机会，她将目光投向了一些社区和养老机构合作的机会，期望能否让孩子们参与工作，比如给老人们配餐的服务等等。
家长们的互相守望
这一年，唐果之家涉及到职业教育阶段的家庭就有60多个。目前，唐果之家有一个工作团队，还拥有5名社工，主要以项目的形式与家长建立连接，或者家长主动来求助一些事务，运行机制很灵活。
李秀芳说，唐果之家的家长们也感觉很幸福。许多外地的家长，都非常羡慕长沙的家长们有唐果之家，“我知道，唐果之家并不能真正解决一个（唐氏孩子）家庭具体的问题。但是对于家庭来说，唐果之家是提前去思考，解决这些家庭具体问题的一些方法。”
因为无法同时兼顾唐果之家的运作，2020年，李秀芳两难之下选择了辞职，专心打理唐果之家这个纯公益组织，“当时觉得我必须要选择一个。”
唐果之家已经非常稳健地运行十余年了，李秀芳还是忙得脚不沾地，对家里人也有一些亏欠，她最大的愿望是希望能多陪伴一下孩子。
如今，唐果咖啡店也走过了3个年头。翻看社交媒体，唐果咖啡还有不少拥趸，顾客们在店里拍图打卡，认真写下对咖啡品质的感受，甚至评价为咖啡控必冲的咖啡店。
7月30日，李秀芳告诉新黄河记者，最近两个月，店里停业，正在准备装修。“慢慢摸索，慢慢尝试。”总结开店3年的感受，李秀芳还是希望，能通过这样的形式将孩子们的真实需求表达出来，帮助他们更好地融入社会，“只有让别人更真实地了解他们，才能让大家（考虑）怎么为他们提供一些支持。”
记者：陈思 编辑：吕冰 校对：汤琪
On a street corner in Yuelu District, Changsha, Hunan Province, there is a special coffee shop where some staff members act slowly and skillfully, serving customers a cup of hot coffee before giving them a shy smile. In fact, they are a group of young people with Down syndrome. In 2023, in order to help more children with Down syndrome smoothly enter society, "Tang Bao" mother Li Xiufang, together with other parents, opened this coffee shop. Many families with Down syndrome have found comfort and hope in this coffee shop, which also allows more people to see the true side of the Down syndrome community.
After the arrival of a child with Down syndrome
Down syndrome, also known as Trisomy 21 syndrome or Down syndrome, is the first confirmed chromosomal disease in humans, often occurring by chance or with genetic factors. Children with Down syndrome are also known as "Down syndrome children" or "Tang babies". The main features include special facial features, intellectual disabilities, delayed growth and development, and accompanying deformities.
In her early years, Li Xiufang worked in a state-owned enterprise in Changsha as a technical worker, and later transferred to a finance position. In 2002, Li Xiufang welcomed the birth of a baby for the first time and did her homework as a novice mother seriously, including every prenatal examination in a tertiary hospital, and she did not miss any.
But at that time, the emphasis on diseases such as Down syndrome was not as high as it is now. Soon, Li Xiufang's joy of becoming a mother was extinguished by a bucket of cold water - when her son Gao Jin was over a month old, he began to behave differently from other children and was diagnosed with Down syndrome.
This strong and capable woman, in every step of her child's life thereafter, she used all her strength to support them.
After entering kindergarten, Gao Jin was not very good at socializing with other children and needed extra care from teachers. Fortunately, the principal of this kindergarten is promoting a relatively new Montessori education philosophy and exploring new teaching models that respect individual needs of children more and provide them with more opportunities for self-expression. Xiao Gaojin's time spent in kindergarten was still very happy.
By the time Gao Jin entered elementary school, the situation had slightly changed. Many schools directly reject children with Down syndrome. Li Xiufang didn't dare to voluntarily confess her child's situation to the teacher, but she happened to run into a teacher who also had a child suffering from depression at home. She could empathize with her and was willing to take care of Gao Jin.
When Gao Jin changed teachers in fourth grade, Li Xiufang also had a second child, and her time and energy were scattered. Under various pressures, Gao Jin was sent to a special school. However, due to the solid foundation in the early stage, Gao Jin performed very well and cooperated particularly with the teacher. The teachers also like Gao Jin very much and gave him enough opportunities to perform. He learned to take responsibility and was trained to be very confident, obedient and sensible. He helps his parents cook and wash dishes at home and does household chores quite smoothly.
Li Xiufang is very grateful to the influential people her child has met along the way, "I think he is particularly lucky
Parents huddled together for warmth
Li Xiufang considers herself to have a persistent personality. Once she identifies what she wants to do, she must do it well and strive for excellence. Because she was well aware of the difficulties faced by families with Down syndrome, in 2013, she began to gather parents of children with Down syndrome to establish a public welfare organization for families with Down syndrome to stay warm together.
There are relatively few organizations like ours that focus on providing lifelong service support for children, "Li Xiufang recalled. At that time, apart from some places that provided rehabilitation centers for children or day care centers for adults, organizations like them that focused on advocating for the continued voice of the Down syndrome group were not only the first in Hunan Province, but also rare nationwide.
The original intention of founding a public welfare organization was that Li Xiufang accidentally discovered that as parents around her gradually entered old age, the future trust of their children became a heavy burden that these parents could not let go of in their hearts.
In 2013, Li Xiufang and other parents discovered some advanced models in other places and wanted to replicate them locally to create opportunities for their children. Parents accompanied and supported each other, giving each other strength. They also believe that the collective strength of everyone can give children more opportunities.
In 2014, Tangguo Home was officially established, and the name was discussed by everyone because many families with Tang children no longer feel at home. "A beautiful vision, I hope they can all have a sweet life
Parents often gather at Sunshine 100 Community in Yuelu District. At first, it was parents who carried out some activities with their children, and later everyone began to carry out some topic based advocacy activities around the specific needs of the children. Because there is not much experience to learn from domestically, everything is gradually explored and adjusted by parents themselves, "giving these families some confidence and strength, and also providing a window for the public to understand them
In terms of medical treatment, there hasn't been much breakthrough or change in the treatment of Down syndrome, so Li Xiufang focuses more on special education. In her opinion, the support of the social environment is the most important for the Down syndrome group. She also realized that there were certain limitations to the inherent understanding of the Down syndrome population in society in the past. But with the growth of children, in recent years, the public's awareness of Down syndrome and the social environment's tolerance towards the Down syndrome group are increasing year by year, which has given some hope to parents like Li Xiufang.
The support of maternal love
The love for her child drives this mother to keep moving forward. Li Xiufang and her parents have carefully designed many activities, such as creating independent living spaces in the community, teaching children how to cook and clean, and cultivating their ability to live independently. Moving from youth to adulthood, providing vocational education to children, helping them understand what a profession is, learning preparation before employment, and cultivating professional qualities.
Li Xiufang said that parents have invested a lot of time, energy, and resources to help their children obtain better educational opportunities. But in adolescence, children can only return to their families and face the awkward situation of no job opportunities.
Li Xiufang and several parents decided to open a coffee shop together to provide internship and job seeking experience for their children. Several parents jointly invested and personally decorated and designed Tangguo Coffee, and thus opened it. "After a woman becomes a mother, no matter how difficult it is for her child, she may give it a try
Li Xiufang said that when the children come to the store for internship, the staff not only provide technical guidance, but also need a career counselor to provide support. In addition, the store is also small, so only two children can be arranged together each time. The internship period is three months, and the operation of the store is handed over to a young man in the later stage.
Li Xiufang said that arranging children to learn how to make coffee is not only about learning the professional skills of making coffee, but also about cultivating some basic qualities of children, such as the need to gradually decompose some store work, and children will also carefully take down numerous instructions. Over the years, the children themselves have also undergone significant changes.
Under the media's lens, this coffee shop has a simple decoration and a particularly warm atmosphere. Parents and children of Candy House sit around the coffee shop with smiles on their faces, and the shop is filled with laughter and joy. Some children, under the guidance of the shop assistant, carefully bring the coffee to the customer and then bow gently.
However, Li Xiufang admitted that there are very few children who can be pushed out to work after the training is completed, but parents are still trying their best. Gao Jin found a job as a warehouse manager, which gave confidence to other children and parents around her.
Gao Jin cherishes this job very much. Although he may encounter some small problems at work, he pays great attention to his attire every day and enjoys the sense of achievement that work brings.
At the end of 2025, after the expiration of Gao Jin's job contract, he will continue to work as a cleaner in a corporate park, and he still enjoys his job very much.
I value the opportunity for children to participate more. Li Xiufang is relatively indifferent to the difficulties children face in finding jobs. The pressure of finding a job is not small for ordinary people nowadays, let alone children. She has been trying to connect with the community to see if she can develop or find some flexible or short-term job opportunities. She has turned her attention to opportunities for cooperation between the community and elderly care institutions, hoping to involve children in work, such as providing meal services for the elderly.
Parents' mutual vigilance
This year, there were more than 60 families involved in vocational education at Tangguo Home. At present, Tangguo Home has a work team with 5 social workers, mainly establishing connections with parents in the form of projects, or parents actively seeking help for some affairs. The operation mechanism is very flexible.
Li Xiufang said that the parents of Tangguo Family also feel very happy. Many parents from other places are very envious of the Tangguo Family in Changsha. "I know that Tangguo Family cannot truly solve the specific problems of a Tang family. But for families, Tangguo Family is a way to think ahead and solve these specific problems
Due to the inability to simultaneously manage the operations of Tangguo Home, Li Xiufang chose to resign in 2020 in a dilemma and focus on managing Tangguo Home, a purely non-profit organization. "At that time, I felt like I had to choose one," she said
Tangguo Home has been running steadily for more than ten years, but Li Xiufang is still busy and has some debts to her family. Her biggest wish is to spend more time with her children.
Now, Tangguo Coffee Shop has also gone through three years. Looking through social media, Tangguo Coffee still has many fans. Customers take pictures and check in at the store, carefully writing down their feelings about the quality of the coffee, and even rating it as a coffee shop that must be visited for coffee control.
On July 30th, Li Xiufang told New Yellow River reporters that the store has been closed for the past two months and is preparing for renovation. Slowly explore, slowly try. "Summarizing her feelings after opening the store for three years, Li Xiufang still hopes to express the real needs of children through this form and help them better integrate into society." Only by letting others understand them more authentically can we make everyone (consider) how to provide them with some support
Reporter: Chen Si Editor: Lv Bing Proofreading: Tang Qi