Many families who have children with special needs or 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.

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他们的孩子的dis /能力。为方便，您将看到此信息中使用的“DIS /能力”或“DIS /能力”的术语。拥有“残疾”是让美国的儿童和成年人能够获得某些权利和服务（IDEA，2004; ADA，1990）。

DIS /能力以不同的方式影响个人。有些人有终身的弱点，并将需要护理到成年人;虽然其他人将以允许他们生活的方式学习和发展，但甚至“超越”诊断。DIS /能力可以是可见的或不可见的，并影响所有人的学习或影响一个特定学习区域的所有能力。yabo电子游艺您可能会看到用于描述孩子在开发中的差距的术语发育延迟，这与幼儿早期的特定诊断或条件或特定于发展的特定发展（诞生六）。例如，演讲延误在具有发育延误的幼儿中很常见，但许多这些孩子在进入幼儿园时赶上同行。

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.

对DIS /能力的情绪反应

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.

以下是悲伤的阶段，家庭与患有DIS /能力的儿童通常经验。这些阶段没有特定的命令，所有家庭也不会体验这些情绪中的每一个（鸢尾中心）。有些家庭可能会在内部感受这些情绪，但试图将他们的感情掩盖给别人。

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：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: 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：这是神奇思维的阶段和不切实际的期望。小学护理人员可能会认为如果他们努力工作以帮助他们的孩子，他们将获得他们的孩子“治愈”或他们孩子的症状会消失。主要护理人员可以预计计划人员以赋予儿童保育环境的练习范围的方式为其孩子提供，或者鉴于计划的成年与儿童比例是不现实的。

害怕：有很多医疗需求的儿童的父母可能担心孩子的生命或担心其他护理人员不知道如何保证孩子的安全。一些主要的护理人员担心，没有人会以他们的方式为孩子感受和照顾。如果一个具有DIS /能力的孩子的主要照料似乎对他们的孩子的照顾至关重要，就知道恐惧可能是这种行为或信仰的根本原因。

其他角色

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.

提倡	Ensures that the child has full access to rights and services on behalf of the child
案例经理	协调所有关心，约会，专家，医生和教师，并向所有更新缔约方提供信息
专家	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	负责培训专业人士和护理人员如何妥善执行儿童的推荐或任务
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.

兄弟姐妹，特别是因为他们成为青年，有时会采取象征性的任务和角色。一些有DIS /能力的儿童的兄弟姐妹将茁壮成长并感受到骄傲的感觉。其他兄弟姐妹可能会感到嫉妒或厌倦了兄弟姐妹，特别是当家庭的日程和优先事项似乎在照顾其他孩子时。主要护理人员可能觉得他们的大部分时间都在为他们的孩子带来关心他们的孩子，他们不会让个人关注他们的其他孩子。如果兄弟姐妹在年龄较近，他们可能没有“玩伴”的关系，因为他们常常想到他们计划孩子的间隔。

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.