有许多有孩子的家庭，有人/能力描述了他们的孩子挑战但极为有益的人。其他人觉得好像关心他们的孩子与照顾任何其他孩子都没有什么不同。无论家庭如何感受到他们的护理职责，重要的是要认识到他们往往具有特定于孩子需求的额外作用和责任。这对小学护理人员来说可能极大压力;重要的是你了解对家庭的压力和福祉的影响。我们还必须考虑对整个家庭单位的影响以及与我们通常如何考虑家庭成员的方式重新定义角色。

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。

您可能会看到一些主要护理人员如何了解他们的孩子与同龄其他孩子的发展方式不同。他们可能会询问您对孩子的行为或发展有关，以了解他们注意到的差异是典型的。您甚至可能是第一次分享问题的人，并推荐家庭与医生或专家发表讲话。虽然很少见，但在你的工作中可能有时与你受到破坏而震惊的孩子，以了解你的护理中的孩子有严重的病情或者已经参与了一个创伤事件，如车祸。在孩子出生或出生之前，有些家庭发现有或那个孩子将出生在一个条件下的风险。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.

Emotional Responses to Dis/Ability

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：家庭可能不相信他们的孩子具有特定条件或学习需求的消息。yabo电子游艺当新闻令人惊讶时，这可能尤其如此。个人的文化，接受人们的人/能力，以及特定情况的知识可能会影响一个人的报告。拒绝的人可能会试图诋毁参与过程中参与的医生或专家。拒绝的家庭成员可能会对他们的孩子进行陈述，“从不在家里的方式行动”或“医生不知道如何在孩子身边。”当条件基于行为评估而不是通过血迹或遗传次劳工组等客观测试时，尤其如此。

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。

沮丧：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.

讨价还价: 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.

害怕: 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
案例经理	Coordinates all care, appointments, specialists, doctors, and teachers, and informs all parties of updates and important information
Expert	对特定诊断或条件的理解范围很大，可用于回答问题，并在出现问题时向他人提供援助
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

对家庭的影响

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.

当孩子有一个以上的主要看护人时，习惯和能量被用来做出关于共同责任的决定。这对于拥有多个主要护理人员的所有家庭来说是正确的，但对具有DIS /能力的儿童的家庭可以特别压力。如果个人共同关心是婚姻合作伙伴，母亲和女儿，或任何其他安排，他们可能没有计划照顾孩子所需的额外任务和时间。有些家庭可能有额外的护理需求，可能有一个相对或保姆，非常涉及支持可能在可能没有否则不需要的家庭的家庭，如果他们没有孩子。

Due to the diverse cultural views on dis/ability, 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。