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.

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

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.

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

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: 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: 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。

Depression: 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.

Bargaining：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。

Fear：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
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
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
Financial Planner	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

Impact on the Family

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。

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.

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.