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。

您已经了解了向个人家庭提出反馈的重要性，他们更喜欢您使用的语言讨论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.

yabo电子游艺学习新闻

如何学习他们的路径是一个家长,抓住ndparent, sibling, or other family member to a child with a dis/ability is different for every family. We will use the term “primary caregiver(s)” to refer to the person(s) most central to a child’s care. Primary caregivers are usually a child’s mother, father, grandparent, relative, or foster parent.

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

Think about what it must be like to first learn that your child has a dis/ability. How would you react? Who would you turn to for support? Although rare, some families will not experience strong emotions and immediately embrace the situation. Others will be filled with a range of emotions and may react in ways that are not usual for them. Grief is included in the range of emotions often felt by primary caregivers. Grief is a deep feeling of sorrow, and we often think of it as what one feels after the death of a loved one. Most children with dis/abilities thrive but on rare occasions some children, despite a loving family and access to evidence-based intervention, are very slow to make minimal progress. These families may grieve for the child they thought they would have, but with time and support, they develop new hopes and dreams for their child.

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.

Denial: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: Some families feel as though they did something wrong or are responsible for their child’s dis/ability; as a result, these families can begin to question their past decisions. Families may feel as though professionals talk down to them or are critical of their decisions and parenting, which may increase any existing feelings of guilt. While professionals do not intentionally make families feel this way, be aware of your own biases towards families and their decisions. It can be difficult to hide your feelings and opinions when you communicate with families, but keep in mind that your role is to be supportive of their decisions.

Anger: Parents and caregivers may feel angry about their child’s dis/ability. Some describe feeling as though it’s not fair to their child or that they have bad luck. They may take their anger out on others. Remember that this anger may help families cope and eventually create plans for how to help their child in the future.

沮丧: There is evidence to suggest that mothers of children with developmental dis/abilities are at increased risk for depressive symptoms due to the stress of parenting compared to parents of children without dis/abilities (Zeedyk & Blacker, 2017). While there is generally less research on fathers, some evidence suggests that those with children with dis/abilities also experience an increased risk of depression.

Anxiety: 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

Primary caregivers often feel as though they take on extra roles when parenting a child with a dis/ability. Consider these roles and reflect on how these responsibilities impact the well-being of primary caregivers. Also think about how you can partner with the primary caregiver to help ease the stress of additional roles.

Advocate	Ensures that the child has full access to rights and services on behalf of the child
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
Trainer	Responsible for training professionals and caregivers how to properly carryout a recommendation or task for the child
理财规划师	Researches and coordinates long-term care plans to ensure the child will maintain quality of life when primary caregivers can no longer continue their roles

对家庭的影响

As you reflect on the emotional experience and many roles of primary caregivers of children with dis/abilities, think about the impact on the entire family.

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。

由于对DIS /能力的不同文化观点，一些核心家庭选择不与他们的孩子有DIS /能力的大家庭和朋友分享。他们可能会感到羞耻或不确定别人如何反应。有些人可能担心他们生命中的重要人物将无法与DIS /能力毫不符合。在与他人开放的家庭中，他们的孩子的DIS /能力，他们分享的数量和信息有多有所不同。在各个悲伤的主要护理人员中可能很难难以理解他们接受听取意见并回答有关孩子的问题。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.

Families with children with dis/abilities may feel they cannot take part in community activities. Some caregivers feel embarrassed about their child’s development when in public or feel the need to apologize or explain for their child. Seeing children who are typically developing and of a similar age to their child can be emotional, especially as those children reach expected milestones that their child with a dis/ability is delayed in developing. This can re-trigger the various stages of griefs discussed above.

References & Resources

虹膜中心。（2008）。Collaborating with families.Retrieved fromhttps://iris.peabody.vanderbilt.edu/module/fam/

Seligman，M.＆Benjamin Darling，R.（2007）。对家庭的影响作为系统。普通家庭，特别孩子们（第181-217页）。New York, NY: The Guildford Press.

Zeedyk, S.M. & Blacher, J. (2017). Longitudinal Correlates of Maternal Depression Among Mothers of Children With or Without Intellectual Disability.美国智力和发展障碍杂志122（5），374-391.