Advocating for your child During your child’s treatment, you likely had to advocate for your child to ensure that they were getting the best care possible. Advocacy continues to be important as your child begins to reintegrate into their daily life after treatment. Every parent wants this transition to go smoothly, and to have a plan in place to help manage any obstacles or “roadblocks” that come your child’s way. As a parent or caregiver, you may be wondering how you can help your child be most successful at home, at school, with their peers, and in the future. Fortunately, there are many ways in which you can help to ensure that your child is set up for success. Educational supports and accommodations Individuals undergoing treatment for cerebral ALD may have a period of homebound instruction after treatment, which can often be offered through hospital programs and/or the local school district. For many children, returning to in-person school after treatment is both exciting and scary. Your child may have missed out on a good portion of their school year during treatment and recovery. They also probably had fewer, if any, opportunities to spend time with their friends and classmates. As you can imagine, it may be hard for some children to “jump back in” and pick up where they left off. Your child may benefit from a slower transition back to school as they adjust to their new schedule and expectations. Working with your child’s school to develop a phased back-to-school plan may be helpful for reducing the chances that your child becomes overwhelmed and fatigued. This may look like coming in for partial days at times when your child is “freshest” or limiting school time to only certain days of the week. As your child builds their comfort and endurance throughout the day, your child may be able to gradually remain at school for longer periods of time. Of course, there are many other factors to consider as you’re planning for your child’s return to school, especially in the context of the COVID-19 pandemic. Your family, along with your child’s medical team, will have to consider what level of risk makes sense for your child. In preparation for your child’s return to school, we recommend that you request, in writing, that your child be considered for formal educational services. Once a return date is anticipated, it may be helpful meet with your child’s educational team to share information about your child’s condition, talk about your child’s needs, and discuss school accommodations and services that may benefit your child. Specifically, your child may be eligible for a 504 Plan or an Individualized Education Plan (IEP). Both of these plans provide accommodations, but an IEP also includes specialized instruction/interventions to support your child in areas where they may struggle, such as providing speech/language, physical or occupational therapies, delivering specific reading, writing, and/or math interventions, or providing structured support for your child’s social, emotional, and behavioral development. An IEP also requires individualized goals, which have to be measured at regular intervals to track your child’s progress. In addition, for children with adrenal insufficiency or other medical needs (e.g., administration of prescription medications, specific procedures), there may be an individualized health care plan or an emergency healthcare plan incorporated into your child’s IEP that addresses your child’s health and safety needs while at school. To determine eligibility for educational services, your child’s school may require an evaluation; however, if your child has already had a neuropsychological evaluation and you are willing to share the report with the school, your child may not need to complete additional testing or testing may be reduced. Additionally, if your child’s neuropsychological evaluation was performed at a specialty center, the report will likely contain information and recommendations that are specifically tailored to your child with ALD. Schools and educators often know very little about ALD, so being able to rely on the expertise of a pediatric neuropsychologist may be helpful for your child’s educational team when designing your child’s educational plan. |
Conner is having a good time working hard on his fine motor skills post-transplant.
Nicholas is welcomed home after his transplant!
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Navigating the special education process is not an easy task and you may find that you need more support with this process. There are a variety of educational advocacy groups that help individuals with special needs and disabilities gain access to a free appropriate public education. It is important to note that special education services for children attending private schools may be different than plans for children attending public schools, and you may want to seek out additional guidance regarding how best to support your child if they attend private school.
- The Arc is a national organization with over 600 local and state chapters across the country.
- To access advocacy services in your local area, please visit their resource directory.
- More information about education policy and advocacy initiatives supported by The Arc can be found under their education section.
- PACER Center, a Minnesota-based parent-to-parent information training center, offers information, advocacy, and support to help parents navigate educational and community resources for children with disabilities. While some of the content on this website is geared toward residents of Minnesota, other content is more broadly applicable to parents and caregivers.
- For more information about special education services, read their special education overview.
Rehabilitative therapies, assistive technology services, and adaptive equipment
It is not uncommon for children who have been hospitalized for extended periods of time to need more support with tasks that previously came easily to them, like walking, talking, and using or coordinating movements with their hands (e.g., picking up a utensil, writing, buttoning clothing). Your child’s medical team will be able to provide referrals for outpatient rehabilitative therapies such as occupational, physical, and speech/language therapies. These services can be quite helpful for building strength and endurance, motor skills, and communication skills. It is also often helpful if your child’s therapist provides you with some activities that your child can work on at home to help them continue to build skills between sessions. For younger children, fun incentives (e.g., earning a sticker/prize or fun activity) may help encourage them to complete these home exercises. As children work to build their strength and skills, they often also benefit from access to assistive technology devices and equipment at school, including use of computers and tablets, voice recognition program or speech-to-text, and other specialized tools. In some cases, visual aids, hearing amplification devices, and mobility aids (e.g., wheelchairs, walkers, canes) are also beneficial. Individuals with physical limitations may require additional modifications to their environment to promote their independence and safety. Working with your child’s special education team will be important to make sure that your child’s needs are being met and the appropriate level of accommodations and modifications are in place in your child’s environment to promote their inclusion in school activities. |
Jack is having a good day in therapy!
More fine motor skills for Conner.
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We all want our children to feel as independent as possible so they can live happy and fulfilling lives. Specialized adaptive equipment and mobility aids can be beneficial for promoting independence with daily tasks (e.g., eating, dressing, personal hygiene, transportation) for children with physical/sensory limitations or disabilities. Examples of these types of devices include wheelchairs, hearing aids, mobility aids or GPS devices. Your child may be eligible for state or local funds to help with purchasing these types of equipment if they are not covered by your insurance (see the “disability resources” section below for more information). In addition, you may find that there are local nonprofit organizations that provide assistance with ordering these types of equipment and obtaining financial assistance. For more information about adaptive devices and mobility aids, or to receive assistance, visit the United Disabilities Services.
Jack and his sister,
Anna, enjoying the sunshine! |
Supporting a young adult with ALD
Independent living skills, vocational training, transition planning As you look toward your child’s future, you may be thinking about your child’s transition to adulthood, including their capabilities for independent living, what types of careers they may be best suited for, or how they will manage daily responsibilities like cooking, transportation, taking medications, and managing their money. For some individuals, independent living and vocational skills can be developed with targeted education, training, and supervision. Your child may be eligible for transition planning services through your local public school district. If eligible, your child will be provided with additional educational support for developing their independent living skills. They will also meet with teachers or counselors to discuss career options and employment opportunities after high school. Talk with your child’s special education team to determine if these services are offered for your child. |
There are also a number of government resources available to support adolescents with disabilities in their transition to adulthood. Your child may be interested in meeting with a vocational rehabilitation counselor who can help them obtain workplace preparation and job placement support. There may be county services available for independent living skills training. Some families may find it helpful to work with organizations for the blind/deaf for resources to navigate any new sensory differences. There are also resources to help your child secure housing and health insurance. More information about programming and services can be found on the Federal Partners in Transition fact sheet.
Social opportunities and engagement
Social support is an important component of your child’s overall health and wellbeing. We encourage all youth and young adults to participate in social events and activities, and to find ways to stay connected with others in their community. Talking with your child about their interests, hobbies, and favorite activities is usually a good place to start. Finding friends with similar interests can be challenging, but there are also often local meet-up groups or events for young adults, some of which may be geared toward individuals with similar disabilities. A search on meetup.com or Facebook could give you and your child some suggestions for local events and groups. You may also find a list of upcoming local events at your library, community center, or recreation center.
Oversight for vulnerable individuals
For some individuals, additional support and oversight may be required to protect the safety of the individual and ensure their personal needs are met. There are many different ways that young adults can receive support. We recommend that you and your family meet with an attorney to discuss different options and to review their advantages and disadvantages. Below we provide some information about different options. This list is not meant to be exhaustive and not all options may be the right fit for your family’s circumstances.
Social opportunities and engagement
Social support is an important component of your child’s overall health and wellbeing. We encourage all youth and young adults to participate in social events and activities, and to find ways to stay connected with others in their community. Talking with your child about their interests, hobbies, and favorite activities is usually a good place to start. Finding friends with similar interests can be challenging, but there are also often local meet-up groups or events for young adults, some of which may be geared toward individuals with similar disabilities. A search on meetup.com or Facebook could give you and your child some suggestions for local events and groups. You may also find a list of upcoming local events at your library, community center, or recreation center.
Oversight for vulnerable individuals
For some individuals, additional support and oversight may be required to protect the safety of the individual and ensure their personal needs are met. There are many different ways that young adults can receive support. We recommend that you and your family meet with an attorney to discuss different options and to review their advantages and disadvantages. Below we provide some information about different options. This list is not meant to be exhaustive and not all options may be the right fit for your family’s circumstances.
- Supported decision making allows individuals with disabilities to have a say in decisions and choices that affect them; they designated a team of people they know and trust to provide support and guidance.
- Advanced directives/healthcare directives are written, legal instructions stating an individual’s preferences for medical care when a person is unable to make decisions for themselves.
- Power of attorney provides a designated individual with the power to make financial, property, or health care decisions on another person’s behalf.
- Representative payee program is when a person manages social security or supplemental security income (SSI) benefits payments on behalf of the beneficiary.
- Guardianship and conservatorship are determined by legal proceedings. For guardianship, a person is appointed by the court to step in and make decisions about an individuals’ personal needs such as medical care, shelter, food, clothing, and safety. On the other hand, conservatorship covers decision-making about financial affairs.