The truth is, the more people with disabilities in a home, the more support they will require. This means that supporting the needs of multiple children with disabilities can require additional support for both the children and caregivers throughout their lifetime. The need for additional support is universal. Often families need to look outside of their immediate circle to the community for support for both themselves and the children in their care.
Navigating medical, school and community systems, all while having to meet the needs of multiple children with disabilities, is a very daunting task. An easy example for us to think of is getting ready for school in the morning. By the time a child is around eight years old, the average parent should be able to delegate some of the tasks to the student to complete each morning, such as picking the granola bar and drink they want in their snack, or putting on their own clothing. However, a child with disabilities, by and large, takes longer to learn these independent skills, and may require verbal and/or physical prompts in order to get ready for school. This requires more parental supervision, and for some children, that higher level of supervision may not change over time.
Teaching life skills, medication management, and an understanding of their disability appropriate to their developmental ability can help the child learn how to ask for his or her needs and accommodations to make a task more achievable. These skills are the foundation needed to teach the child or youth what they need to do to accomplish their life goals. A life skill often overlooked is the ability to go to and participate in dental cleanings. Simple procedures like a preventative tooth cleaning may require sedation or complete anesthesia, making it a procedure that requires much more planning, cost, and risk. These extra steps can make planning for routine care much more challenging.
Neurotypical children are able to learn quickly that it is safe, and what they need to do to have their teeth cleaned. For children with disabilities, this learning process typically requires repetition and perhaps multiple visits per year before they are able to allow dental staff the trust to clean their teeth. You can talk to your dentist about letting your children come in for more than just cleanings. For example: you might bring them in to just sit in the chair and get comfortable with the environment and equipment. For those who can’t become comfortable, sedated dentistry may need to be an option to have their dental needs met. With multiple children with disabilities, dentist visits might need to be separate for each child, and that means a lot more time away from potential working hours for the parent.
Frequently, parents need to balance routines between children that have a wide variation in their skills and abilities. Perhaps, one child can dress themselves independently and pack their own lunch, and the other child requires a higher level of prompting and assistance to complete the same tasks. It can be especially difficult to navigate when the child who requires the higher level of support is older. This is just one example of why it is so important to talk to your children about their disability, and teach them self-advocacy skills. It can also be worth reviewing your child’s routine to see if an additional accommodation might provide them with a higher level of independence. A child that needs a higher level of prompting and support to dress themselves in the morning may be more successful if their clothes are laid out the night before. A small change like this can make the routine smoother, helping both the child complete their daily activities in a more independent way, and the caregiver, by perhaps giving them a moment to help the other child or sit down and tend to their own needs.
For those raising more than one child with a disability, it’s not unheard of for the children or youths’ support needs to be very different. For example, one child may thrive in busy social events, another may prefer to be in a quieter setting. How can parents meet the needs of both children when they conflict? Ideally, every family would have a village of support that they could draw on, but that’s not always the case. Sometimes, we have to find and make our village. Parent support groups can be a good place to start. If you’re wondering where to start, or want to learn more about parent groups and their benefits, check out the Center for Parent Information and Resources for more information. Obtaining emotional and logistical support from a peer who has lived experience, and understands the struggles of raising children with exceptional needs can have an enormous positive effect on the mental health and empowerment of caregivers. They are also a helpful resource for school, community and state level programs that serve families of children with disabilities.
Families raising multiple children with disabilities are much more likely to experience higher levels of stress without support from family or community. “Parents of children with special educational needs experience high levels of parental stress”. (Andrew W. Y. Cheng and Cynthia Y. Y. Lai, 2023) As the old saying goes, it takes a village to raise a child and the need for support is exponential for a parent with multiple children with disabilities. Parents need to coordinate doctor’s appointments, medical procedures, therapies, school, and social events. Everyday outings to the store for immediate needs requires careful planning. Knowing the support available in your area can make a big difference in the outcomes for the family and provide a small sense of normalcy.
Medical case management can be a helpful tool for families providing care for multiple children with disabilities. Where possible, consider selecting providers at a single hospital system. This allows for simpler coordination of care and less overall paperwork for the caregiver to manage between offices. Medical Case management can be a much-needed resource for details surrounding what is covered by their insurance plan, as well as, helping to arrange for things like a personal care attendant. Utilizing Medical Case Management can also streamline assistance with appeals and coordinating complex care.
The care that children with disabilities receive can be complex and difficult to manage with one child. That difficulty increases when you’re parenting multiple children in need of specialized care. Talk to your children about the medical professionals that support each child, the medications they take and why. Read social stories or better yet, create your own. Narrate and use checklists that explain what you are doing, as you complete various tasks to schedule appointments. Watch videos of people scheduling, planning, and attending medical appointments. This will support their experience and help them learn the skills they need to complete more complex planning and execution. For resources to help with these skills, check the National Center for Pyramid Model Innovations.
Parenting multiple children with disabilities is universally hard. Having support systems like family and friends to help can really make a positive difference. What happens if they have no experience with disabled children? Perhaps, they would love to have a connection with your child, but have no idea how to relate to them. If they want to learn, teach them. When you explain your child’s disability, also include ways to connect and things to avoid.
“How can I learn to build a connection with my grandchildren so we can have a close relationship?” - Sandra Klinkhammer
It’s entirely possible that you may have family or friends who would love to help you and build a relationship with your children, but they are unsure how to start. Teaching your child the language to explain their likes and dislikes can also help them explain their needs and connect with others on their own.
In addition, first responders can be overlooked when you’re educating your child’s community. It’s important to consider whether they too might benefit from understanding how best to interact with your children in case of an emergency. Many counties and states have programs that keep registries of those with disabilities or special health care needs, as well as, how best to interact with them, in case of emergency. As this service is run slightly differently in each area, check with your local police and fire department for more information.
For families with more than one child with a disability, there are more factors that contribute to stress than for the average family. Due to the higher level of stress, and the unique needs of the disabled children/youth, parents are more likely to experience marital issues, need mental health services, and are more likely to experience health issues. “Overall, parents may experience grief, isolation, and considerable stress, leading to mental health issues such as, depression and anxiety. The available evidence suggests there are barriers for parents of children with disabilities to access mental health services. (Chen et al 2023)” That is why self-care and stress prevention, where possible, is critical for the survival of parents of multiple children with disabilities.
Parents that are quick to locate support and get informed on what they can use to ensure that they engage in regular self-care, have a head start on the majority of parents of children with disabilities. Self-care goes well beyond getting a manicure or a bubble bath. As an adult supporting children with high needs, you need to find ways to feel supported, rested, and empowered. As parents, we can ensure that we have opportunities for self-care if we build community connections that create what are known as, natural supports to support the family.
The Children’s System of Care is a strong community support for youth and families with mental health, behavioral, and Intellectual/Developmental Disabilities (I/DD) health needs. A youth can be provided a broad range of services, including: short term mobile response therapeutic support, case management with Intensive in the Community (IIC) or Intensive in Home (IIH) therapeutic support. For parents with I/DD youth, there are additional services that vary state to state, but can include respite options, community engagement, and family support services. Also, depending on your school district, there may be a variety of after school support for students with disabilities, such as clubs, sports, and therapies. For more information, consider speaking with the school social worker or your child’s Case Manager.
While the school social worker and the child’s case manager can be helpful resources for navigating school related concerns, parents and caregivers can also contact their Parent Training and Information Center or PTI. Each state has at least one PTI. They are tasked with performing a variety of services for children and youth with disabilities, families, professionals, and other organizations that support them. While each PTI has different programs and services, they are a great resource to find out more about who to contact in your area for assistance. Topics covered might include things like: how to sign up for insurance, Individualized Education Plan (IEP) support, workshops, 504 plans and civil rights laws that support inclusion, both within the school system and in places like childcare settings. To learn more about PTIs and to locate the one nearest to your area, visit the Center for Parent Information and Resources and select “Find My Parent Center”.
It is worth stressing the value that these supports can provide the individual with disabilities. Supported social activities can reduce at home behaviors and overall stress in the home. Having typical children is stressful. When you add on some of the individualized needs of persons with disabilities, it can become quite overwhelming and difficult for parents to maintain relationships, work, and lifestyle, while balancing the needs of their children. We aren’t built equipped to cope with all of these added stressors.
Many parents of children with disabilities experience a process called grief cycling. Although this is not studied heavily, it is the shared experience of both authors, and a common experience for parents of children with disabilities where the parent grieves for the hopes and dreams that they imagined for their child, before realizing their disability would put limitations on those aspirations. There can be a sense of loss when parents realize their child(ren) may have a drastically different future than the one they imagined. As your child(ren) age, so do their peers, so it is completely understandable to grieve the things your child may not experience as a result of their disability. Life transitions like: starting school, riding a bike, learning to read etc. can be very difficult, as they are built in reminders that your children’s journey may be different than the future you imagined, when you realized you were having a baby. It’s natural to compare them to their peers of the same age, and it can be difficult to see the differences in their achievements. It is however, important to celebrate their achievements, no matter how small they may seem. Walking at three is still walking, speaking at 8 is still speaking, and they worked extremely hard to achieve it. Work to notice and celebrate these victories, as they can help defend against feelings of grief.
Parents should learn to be on the lookout for signs that they need support by utilizing mental health resources. Mental health professionals can teach and support in a variety of ways, including: how to be self-aware of your mental health needs, new coping skills, refresh skills, talking through situations, and they can be a sounding board for parents. Since the pandemic, virtual options are also more frequently available, which can address provider scarcity in more rural areas.
It’s not unusual to experience stress in your marriage. In fact, many studies address a higher divorce rate when you’re parenting a child with a disability. “When you have a child with special needs, your marriage is much more likely to be stressed. This is demonstrated by the numbers: Surveys show that the rate of divorce in families with a child with disabilities may be as high as 87% (Gold Buscho , 2023).” If you and your partner are feeling the strain on your relationship, a little marriage, family, or individual counseling can help talk through the issues at hand, and you can learn new ways to resolve the conflict and get back to living life together. Parenting multiple children with disabilities or special health care needs can put an unsustainable stress on a marriage. It’s important that the couple work on communicating their needs in a healthy way, before resentment builds. It may not sound like an important need to a lot of people, but if you have multiple children with disabilities, it is crucial that you find time to recharge yourself and your relationship, whenever you can. Counseling can educate parents separately or together, on new communication tools that can help prevent future issues.
Pillars of Support : Parenting Resources
Here are some helpful federal programs for caregivers of children with disabilities.
CIPR Parent Groups
www.parentcenterhub.org/parentgroups
Find my Parent Center
www.parentcenterhub.org/find-your-center
National Association for Mental Illness
www.nami.org/Home
Title V State Programs AMCHP
https://amchp.org/title-v-state-profiles
Children System of Care
www.acf.hhs.gov/toolkit/resource-guides-populations-served-acf-programs
Programs funded by the Administration for
Children and Families (ACF)
www.acf.hhs.gov/sites/default/files/documents/main/resource-guide-for-families-with-children-ages-0-12.pdf
National Center for Pyramid Model Innovations
https://challengingbehavior.org/resources
Parent to Parent USA
www.p2pusa.org
The care of children with disabilities or special health care needs is exceptional by nature. This means your self-care and relationship care must also be exceptional, in order to survive. Finding those moments where you can enjoy your favorite activities can make a big difference in your ability to stay calm during the tough times. In addition to finding alone time, consider working to build in time where you can connect with your partner. What do you enjoy doing together? How can you work on your marriage while parenting children with exceptional needs? It could be something as simple as a shared TV series after everyone is in bed, or an outing to a preferred place. Finding time to spend together as a couple, building and maintaining intimacy in your partnership are significant challenges when you’re used to putting the needs of your children first. However, consider the fact that your energy and patience are not limitless, and a strong relationship can be a good source of strength on the hard days of parenting.
No one is going to tell you parenting is easy. Parenting multiple children with disabilities and/or special health care needs is infinitely harder. Consider educating whatever support system you have, as well as reaching out to community resources like parent support groups and your local PTI to fill in what is missing. Finding your community can really impact your parenting journey in a positive way. It’s likely that over the years, parenting disabled children will come with waves of grief as you move through the rough patches. Take the moments available to you to rest and recharge, so you can problem solve at your best. Consider alternative ways for your children to complete a task that may allow them to be more successful. Working to develop self-advocacy skills can help children and young adults with disabilities develop the skills needed for appropriate levels of independence. Try and remember the positives, and take the time to really connect with your children over a preferred activity, and laugh with them.
References
Gold Buscho , A. (2023, February 28). Divorce and special needs children. Psychology Today. https://www.psychologytoday.com/us/blog/a-better-divorce/202302/divorce-and-special-needs-children#:~:text=When%20you%20have%20a%20child,with%20autism%20is%20about%2080%25
Andrew W. Y. Cheng and Cynthia Y. Y. Lai (2023, August 10). Parental stress in families of children with special educational needs: a systematic review Front Psychiatry. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10449392/
Chen, C., Bailey , C., Baikie, G., Dalziel, K., & Hua , X. (2023, July 6). Parents of children with disability: Mental Health Outcomes and utilization of Mental Health Services. Disability and Health Journal.
https://www.sciencedirect.com/science/article/pii/S193665742300078X#:~:text=Overall%2C%20parents%20may%20experience%20grief,such%20as%20depression%20and%20anxiety.&text=The%20available%20evidence%20suggests%20there,to%20access%20mental%20health%20services
ABOUT THE AUTHORS:
Cindy Weber is the Early Childhood Training and TA Specialist for the New Jersey Inclusive Child Care Project and a Family Engagement Coordinator for the Genetic Alliance, both of which are projects that are part of SPAN, New Jersey’s Parent Training and Information Center (PTI). In addition, Cindy is the Board President of the Cumberland Gloucester and Salem Family Support Organization. Cindy and both of her children share a diagnosis of PTEN Hamartoma Tumor Syndrome. Through their diagnostic journey and beyond, Cindy learned to adapt to a parenting journey full of unexpected specialists and last minute changes. Cindy is a member of various committees serving New Jersey families as well as serving families of children with disabilities nationally through her volunteer work with the Rare Disease Legislative Advocates and (NYMAC) New York Mid-Atlantic Caribbean Regional Genetics Network.
Tara Szymanek works as a Training Specialist on the (PTI) Parent, Training, and Information Center Training Team, a trainer on the (SEVA) Special Education Volunteer Advocates Project, and a Family Resource Specialist on the (WRAP) Wisdom, Resources, Advocacy, and Parent to Parent Support Project. Tara is a premutation carrier and her twin twelve-year-old children share a diagnosis of Fragile X Syndrome. Tara is a military family member with parenting experiences in military programs, special education, and health advocacy systems. Tara is a graduate of Partners in Policy Making through the Boggs Center of New Jersey and is a member of various committees serving New Jersey families as well as serving families of children with disabilities nationally through her volunteer work with the Rare Disease Legislative Advocates, (NYMAC) New York Mid-Atlantic Caribbean Regional Genetics Network, and the National Fragile X Foundation.
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