What could you do as a neighbor? Cook meals, help in the evenings Family centered services? Respite care (Friday’s Kids respite) Employer could help by? Adjusting work hours Grandparents or other family members? Helping with baths, taking kids for a night at their house, picking up kids or taking to school, teach kids self-care skills Primary goals for assistance from friends, associates, and family? To foster kids’ independence while providing mom with some time for herself to manage the household, rest, or work.
Nowhere is the impact of a child with a disability felt more than in the family - all day, every day - lifelong support - changes relationships, values, habits All of these things factor into how the child with a disability functions in the family Page 130, figure 6
Waiting for a diagnosis: can be difficult b/c parents know something is wrong, but no one is confirming it yet. No formal supports, can strain relationships Disability apparent at birth vs. later diagnosis Similar to grief process - and many parents will equate it to that. Must grieve the loss of a normal childhood, normal life experience for the child, and also a normal parenting experience for themselves. Must form a new vision, but first need to grieve the loss of the old one. Give examples from Judith’s story for each of these: Shock Realization - coming to grips with the demands of caring for their child and their needs Defensive Retreat - avoidance, denial (judith running) Acknowledgement - acceptance and readiness to accept information and supports, ready to make a plan for the future Non-linear
Mother: - generally greatest amount of pressure, strain - usually the one physically doing for the child – therapies, routines, feeding, etc, a DYADIC relationship (child may only communicate to or through mom). Not always with mom, but usually. -formerly enjoyed activities fall by the wayside - absence from school meetings, events, etc. - be aware teachers! Not always a sign of not caring or not wanting to be involved Fathers: - unsung heroes. Supposed to be the “strong ones” but generally are in deep pain as well. Social pressure to keep it together. More likely to internalize feelings. Research suggests that sons with disabilities are harder to accept for dads than daughters. Lack of communicaiton or appropriate behaviors impact dad’s liklihood of involvement, too. NOT FOR ALL! But generally. Siblings: Daughters usually have greater role in caring for sibling with disability than the sons Included in the long-term plans for care, and can impact relationship (resentment, jealousy). Can also be the child’s biggest advocate and source of support. Often the ones we seek out to probe for inclusive ideas and model for us. Might feel guilty for being the “healthy” child, watch for signs of perfectionism Spousal relationships take a hit – literally have no time for each other, consumed with interventions for the child, and then fears within. Resentment often grows as one parent (usually mom) spends all of her time attending to the child. Is there room for dad? For him as a husband? 80% divorce rate. Moms are exhausted and can feel resentment toward dad for not helping more, etc. Healthy communication is key. Parent-child relationships develop as the child’s needs change over their lifespan. Grandparents/extended family play a role – respite care, etc Generational gap in terms of acceptance of people with disabilities. Need to inform them. You may actually have many students who live with their grandparent. Families believe different things about the role of education in all of this – some feel that the school should be 100% responsible for educational growth and do little to support it at home. Others see the value in a collaborative effort.
Multidisciplinary Collaboration: among professionals involved in the child’s medical, educational, vocational, and social life Family-Centered Support - respite care, adult services, enhance the caregiving capacity of the family, who are worried about the future Training parent and family - how to navigate IEPs and IFSPs, meetings, locate and use resources professionals
Think about the exhaustive role of parents and siblings in natural school activities – how can you support them by making a slight schedule change or field trip location that is more accessible for the student? “ help” = “do it for the child
Factors Influencing the Ways Families Respond to an Infant with a Disability <ul><ul><li>Individual emotional stability </li></ul></ul><ul><ul><li>Interdependent relationships </li></ul></ul><ul><ul><li>Religious values </li></ul></ul><ul><ul><li>Cultural beliefs </li></ul></ul><ul><ul><li>Family socioeconomic status </li></ul></ul>
FORMAL SUPPORTS <ul><li>Multidisciplinary Collaboration of Professionals </li></ul><ul><ul><li>Medical </li></ul></ul><ul><ul><li>Educational </li></ul></ul><ul><ul><li>Vocational </li></ul></ul><ul><ul><li>Social </li></ul></ul><ul><li>Family-Centered Support </li></ul><ul><ul><li>Respite care </li></ul></ul><ul><ul><li>Adult Services </li></ul></ul><ul><ul><li>Enhance care-giving capacity of family </li></ul></ul><ul><li>Training </li></ul><ul><ul><li>Parents and family </li></ul></ul><ul><ul><ul><li>IEP process, exposure to resources, respite care, support groups </li></ul></ul></ul><ul><ul><li>Professionals </li></ul></ul><ul><ul><ul><li>Cross-cultural collaboration </li></ul></ul></ul>
MORE WAYS TO SUPPORT <ul><li>Communication Logs </li></ul><ul><li>Include in after-school activities </li></ul><ul><li>Invite to clubs, social groups </li></ul><ul><li>Consider the siblings </li></ul><ul><li>Creative planning </li></ul><ul><ul><li>Field trips: parent always required? </li></ul></ul><ul><ul><li>Dances: family schedule? </li></ul></ul><ul><ul><li>Projects: sibling always called in to “help”? </li></ul></ul>
RESPITE CARE IN MARYLAND <ul><li>Arc of Howard County </li></ul><ul><ul><li>Video description: http://www.archoward.org/respite_care.html </li></ul></ul><ul><li>Maryland State Family Health Administration </li></ul><ul><li>Baltimore County Respite Care </li></ul>