Many families who have children with dis/abilities describe caregiving for their child as challenging yet extremely rewarding. Others feel as though caring for their child is no different than caring for any other child. Regardless of how families feel about their caregiving responsibilities, it’s important to recognize that they often have additional roles and responsibilities specific to their child’s needs. This can be extremely stressful for primary caregivers; it is important that you understand the impact on families’ stress and well-being. We must also consider the impact on the entire family unit and how roles may be re-defined compared to how we usually think about family members.

You’ve already learned about the importance of asking individual families for feedback on the language they prefer you use to讨论their child’s dis/ability. For ease, you will see the terms “dis/ability” or “dis/abilities” used in this information. Having a “disability” is what allows children and adults in the United States to have access to certain rights and services (IDEA, 2004; ADA, 1990).

Dis /能力影响个人以不同的方式. Some people have dis/abilities that are life-long and will require care into adulthood; while others will learn and develop in ways that allow them to live independent lives or even “outgrow” a diagnosis. Dis/abilities can be visible or invisible and affect all of a person’s ability to learn or impact just one specific learning area. You may see the term developmental delay used to describe a child’s gap in development that is not linked to a specific diagnosis or condition or specific to development in early childhood (birth to six). For example, speech delays are common in young children with developmental delays, but many of these children catch up to their peers by the time they enter kindergarten.

Learning the News

人们如何了解他们是父母，祖父母，兄弟姐妹或其他家庭成员，对于每个家庭都有不同的家庭。我们将使用“小学护理人员”一词来指的是孩子的护理中最核心的人。主要护理人员通常是儿童的母亲，父亲，祖父母，亲属或寄养父母。

You might see how some primary caregivers come to know that their child is developing differently from other children the same age. They may ask you questions about their child’s behavior or development to learn if the differences they notice are typical. You may even be the one to first share concerns and recommend the family speak with a doctor or specialist. Though rare, there may be times in your work with children where you are devastated and shocked to learn that a child in your care has a serious condition or has been involved in a traumatic incident such as a car accident. Some families discover before their child is born or at birth that there is a risk of or that a child will be born with a condition. While it may seem as though families who have known about their child’s dis/ability for some time have adjusted and are accepting of the situation, it’s important to remember that every individual’s emotional experience is different and is deeply impacted by their culture, relationships, and environment.

对DIS /能力的情绪反应

想想首先要了解你的孩子有什么缺陷/能力。你会如何反应？你会转向谁的支持？虽然罕见，有些家庭不会体验强烈的情绪，并立即拥抱这种情况。其他人将充满一系列情感，并且可能以不常见的方式作出反应。悲伤包括在主要看护人的情绪范围内。悲伤是一种深刻的悲伤感，我们经常将其视为在爱人死亡之后的感受。大多数具有DIS /能力的孩子茁壮成长，但在罕见的情况下，一些孩子，尽管有一个充满讽刺的家庭和基于证据的干预，但却是非常缓慢的，以实现最小的进步。这些家庭可能会悲伤他们认为他们会有的孩子，但随着时间和支持，他们为他们的孩子培养了新的希望和梦想。

Below are stages of grief that families with children with dis/abilities commonly experience. There is no specific order for these stages, nor do all families experience every single one of these emotions (The IRIS Center, 2008). Some families may feel these emotions on the inside but try to mask their feelings to others.

否认：Families may not believe the news that their child has a specific condition or learning need. This can be especially true when the news is a surprise. An individual’s culture, acceptance of people with dis/abilities, and knowledge of a specific condition can impact how one copes with the news. Those in denial may try to discredit the doctors or specialists involved in the process. Family members in denial may make statements about how their child, “never acts that way at home” or “that doctor doesn’t know how to be around kids.” This is especially true when the condition is based on a behavioral assessment rather than by an objective test such as bloodwork or genetic workup.

有罪：有些家庭感觉好像他们做错了什么或对他们的孩子的DIS /能力负责;因此，这些家庭可以开始质疑他们过去的决定。家庭可能会觉得专业人士对他们交谈或对他们的决定和育儿批评，这可能会增加任何有罪的有罪感受。虽然专业人士没有故意让家人感受到这种方式，但要意识到自己对家庭和他们的决定的偏见。当您与家庭沟通时，难以隐藏您的感受和意见，但请记住，您的角色是支持他们的决定。

愤怒：父母和照顾者可能会对孩子的DIS /能力感到生气。有些人描述了感觉好像它不公平给孩子，或者他们运气不好。他们可能会对别人愤怒。请记住，这种愤怒可能有助于家庭应对，最终创造在未来如何帮助孩子的计划。

Depression：有证据表明，由于没有DIS /能力的儿童的父母（Zeedyk＆Blather，2017），患有发育患者/能力的母亲的母亲患有发育患者的母亲患者增加了抑郁症状的风险。虽然父亲普遍存存较少，但有些证据表明，那些有患有DIS /能力的人也会产生增加的抑郁风险。

焦虑: Once families begin to learn more about their child’s dis/ability, worry can set in. Questions such as, “How am I going to go to work and take my child to all of these appointments?”, “Will my child have a normal life?”, and “Will my child be bullied or made fun of?” are common worries that

families think about. Anxiety can make it difficult for people to move forward or make changes. Be thoughtful when making assumptions about primary caregivers who struggle to follow through with recommendations for their child. Lack of action or seeming uninterested doesn’t mean they love their child less or are any less involved as caregiver. Anxiety can be crippling; it can prevent individuals from being able to move forward or make adjustments.

Bargaining: This is the stage of magical thinking and unrealistic expectations. Primary caregivers may think that if they work hard enough to help their child, they will be rewarded by having their child “cured” or that symptoms of their child’s dis/ability will go away. Primary caregivers may expect program staff to provide for their child in ways that are out of the scope of practice for childcare settings or are unrealistic given the program’s adult-to-child ratio.

Fear:Parents of children who have a lot of medical needs may fear for their child’s life or fear that other caregivers will not know how to keep their child safe. Some primary caregivers fear that no one will love and care for their child the way they do. If a primary caregiver of a child with a dis/ability seems critical of your care for their child, know that fear may be the root cause of such behavior or beliefs.

Other Roles

主要护理人员经常觉得他们在养育子女育儿时享受额外的角色。考虑这些角色并反思这些责任如何影响小学家的福祉。还要考虑如何与主要看护人合作，帮助缓解额外角色的压力。

Advocate	确保儿童代表孩子充分访问权限和服务
Case Manager	Coordinates all care, appointments, specialists, doctors, and teachers, and informs all parties of updates and important information
Expert	Has a wide scope of understanding about a specific diagnosis or condition and is available to answer questions and provide assistance to others when issues arise
训练师	Responsible for training professionals and caregivers how to properly carryout a recommendation or task for the child
理财规划师	研究和协调长期护理计划，以确保儿童在主要看护人无法再继续作用时保持生活质量

Impact on the Family

正如您反思情感经验，以及发少数儿童的情感经验和许多人带来的儿童和能力的角色，思考对整个家庭的影响。

Siblings, especially as they become youth, will sometimes take on caregiving-like tasks and roles. Some siblings of children with dis/abilities will thrive in this role and feel a sense of pride. Other siblings may feel jealous of or annoyed toward the sibling with a dis/ability, especially when the family’s schedule and priorities seem to be made around caring for the other child. Primary caregivers may feel like so much of their time goes to caring for their child with a dis/ability that they don’t get to give individual attention to their other children. If siblings are close in age, they may not have a “playmate’ relationship that primary caregivers often think of if they planned the spacing of their children.

When children have more than one primary caregiver, much thought and energy is used to make decisions about shared responsibilities. This is true for all families that have more than one primary caregiver but can be especially stressful for families with a child with a dis/ability. Whether the individuals co-caregiving are marital partners, mother and daughter, or any other arrangement, they may not have planned for the additional tasks and time needed to care for their child. Some families may have additional caregiving needs and may have a relative or babysitter that is very involved in supporting the family who may not have otherwise been needed if they did not have a child with dis/ability.

由于不同的文化对dis /能力,some core families choose to not share with extended family and friends that their child has a dis/ability. They may feel shame or unsure of how others will react. Some may fear that important people in their lives will be unaccepting of their child with a dis/ability. Among families who are open with others about their child’s dis/ability, how much and what information they share varies. It can be difficult for primary caregivers who are in various stages of grief or have grown their acceptance to hear opinions and answer questions about their child. For example, a father who has learned to embrace that his daughter has autism may have a brother and sister-in-law who don’t believe “girls can get autism” and that their brother needs to show his daughter “who is in charge of the family.” This can create rifts within families that disrupt support systems and relationships.

有DIS /能力的儿童的家庭可能会觉得他们不能参加社区活动。一些护理人员在公共场合或觉得需要为孩子道歉或解释或解释他们的孩子时会感到尴尬。看到通常发展和与孩子相似年龄的儿童可能是情绪化的，特别是当那些孩子达到预期的里程碑时，他们的孩子患有DIS /能力被推迟发展。这可以重新触发上面讨论的各种悲伤阶段。

References & Resources

The IRIS Center. (2008).Collaborating with families.从...获得https://iris.peabody.vanderbilt.edu/module/fam/

Seligman，M.＆Benjamin Darling，R.（2007）。对家庭的影响作为系统。Ordinary Families, Special Children（第181-217页）。纽约，纽约：吉尔福德出版社。

Zeedyk，S.M.＆Blacher，J.（2017）。有或没有智力残疾儿童母亲母体抑郁症的纵向相关。American Journal of Intellectual and Developmental Disabilities, 122(5),374-391.