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 todiscuss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。狗万app怎么下载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。

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。

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。

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.

Guilt

有些家庭感到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

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.

Depression

有证据表明，由于没有DIS /能力的儿童的父母（Zeedyk＆Blather，2017），患有发育患者的母亲的母亲患有发育性患者的母亲患者患有抑郁症状的风险增加。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

家庭想到了。焦虑可以使人们难以向前发展或进行更改。在制作关于主要护理人员的假设，以为他们的孩子的建议争取努力。缺乏行动或似乎无趣并不意味着他们少喜欢他们的孩子，或者不那么少参与护理人员。焦虑可能是瘫痪;它可以防止个人能够前进或调整。

Bargaining

这是神奇思维和不切实际的期望的阶段。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。

Fear

有很多医疗需求的儿童的父母可能会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

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。

提倡	确保儿童代表孩子充分访问权限和服务
Case Manager	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	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	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
Financial Planner	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。

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。

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.

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。