AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE & DENTISTRY

Concern for Parents of Children with Special Needs

BY H. BARRY WALDMAN, DDS, MPH, PHD, JEFFREY SEIVER, DDS AND STEVEN P. PERLMAN, DDS, MSCD, DHL (HON)

"Caring for a child with activity limitations affects the health, mental health, and ... it can place tremendous physical, financial, time and psychological burdens on the family and may present substantial additional risk for family dysfunction and adverse personal health, mental health and work related outcomes…caring for multiple children with activity limitation was predictive of adverse parental mental health outcomes." 1

"Over time, if these circumstances are not addressed and relief is not found, a cognitive and, sometimes, biological change may start to take place. Chemicals in the brain such as Serotonin and Dopamine regulate our responses to pleasure, hurt and help us navigate our emotions/perceptions of the world around us begin to decrease as we chronically experience negative emotions and/or situations. The longer we're exposed to stress or negative emotions and thinking, the less able we become at coping with those feelings." 2

A report from a national study of a representative sample of the civilian noninstitutionalized population of the country indicated that 15.6% of parents had a child aged 0-17 years with a disability. Compared with parents of children without disabilities, parents of children with any activity limitation were more likely to be between the ages of 35 and 44, white (non-Hispanic), less educated, single parents, living in larger families, and living below 200% of the poverty threshold. Specific findings included:

• • Parents who were employed full-time and have children with disabilities had a significantly higher number of workdays lost than parents of children without limitations.
• • Parents of children with ongoing disabilities had a significantly
•   increased probability of poor mental health compared with parents of children with resolved activity disabilities.
• • Caring for multiple children with activity limitations was predictive of adverse mental health outcomes beyond those experienced by parents of a single child with a limitation.
• • The impact of childhood disabilities on parents' work can have lasting effects on family socioeconomic status.
• • "…healthcare providers need to follow parents of children with limitations over time to ensure that their health and mental health needs are addressed." 1 (emphasis added)

"Researchers … found that the physiological and psychological toll on mothers raising autistic children is significantly greater than that on mothers of children who with no disabilities, and that the chronic stress experienced by mothers of autistic children is similar to that of combat soldiers (emphasis added)… Parents of children with disabilities, for example, face a host of questions that most parents never have to address: Should I set up a special needs trust? How can I help my son or daughter navigate the confusing world of dating? Will my daughter ever be able to live on her own?" 3

And then there are the everyday needs, "Between PTO meetings and work deadlines, it can be hard for any parent to find 'me' time. Magnify that 10 times for parents of children with special needs who must also add IEP (Individualized Education Program) meetings, therapy appointments, and multiple doctor visits into the mix. Add challenges such as driving 50 miles to get to the only dentist who will work with your child, (sic) only to learn that you'll need to come back next week to fill that cavity." 4

IN THE MOMENT: It's important to make the time to play, laugh, be silly and just enjoy your kids. Untold numbers of other families have come together and learned of the joy that these youngsters can bring to the lives of their parents and other family members.

HELPING PARENTS: GETTING STARTED

• One psychologist suggested an array of approaches for the stressed parents:
• 1) You are not alone. There may not be anyone else with the same constellation of symptoms as your child, but there are people with similar challenges. Find those people.
• 2) You, too, deserve to be cared for. Whatever makes you feel special and taken care of, take the time to enjoy it. You are worth it!
• 3) You aren't perfect - and that's ok! No one is perfect. But beating yourself up isn't going to change the situation, so try to move on.
• 4) You are a superhero. You are a therapist, nurse, doctor, friend, teacher and confidante. You are no regular parent.
• 5) Therapy is play. The best therapists find ways to make our child engage in challenging activities that they otherwise would have balked at, by making it a game that they wanted to play. We took a page from their book and did the same at home.
• 6) Play is therapy. He played sled hockey, runs on a track team, learned to shoot archery and takes swim lessons. All of this is therapy. He's learning what fun is and getting stronger.
• 7) Make time to enjoy your kids. It's important to make the time to play, laugh, be silly and just enjoy your kids.
• 8) You will be obligated to make heart-wrenching decisions. You will have to make painful decisions that hurt your heart and leave you questioning everything you thought you knew or understood. Make them, move on and once it's made don't rethink it.
• 9) You won't always get it right. You will do your best, but you won't always get it right, no matter how many sleepless nights you spend agonizing over how to handle a situation.
• 10) Forgive yourself. Remember many of the toughest decisions have no right answer.
• 11) Being a parent is hard work. With the challenges come the rewards. Sometimes, you have to search your heart for the rewards, but they are there if you look for them.
• 12)Parenting a child with extra needs is like running a marathon. So remember, you don't need to win, just make it to the end.
• 13)Don't lose yourself. Don't let being the parent of a child with special needs create or reshape your identity. Find things in your life you enjoy doing, a glass of wine, a hobby, shopping for yourself. 14)Keep your sense of humor. If you're not careful, you can become overly sensitive to so many things that people will start to avoid your company.
• 15)Celebrate the little things! Brag about those accomplishments that might seem small to others but are huge for our kids!
• 16)Don't let typical parents get you down. I know how hard it is to hear from parents that their child six months younger than yours is walking and yours isn't.
• 17)Don't compare. All kids are different, typical, or with extra challenges and they will grow and develop at their own pace. 18)You don't have to be "THAT" parent. I have found that there are always enough of those moms in my kid's classes to keep them in cute snacks and treat bags. Since I have bigger fish to fry, I let them have all the glory!
• 19)Make time for your marriage. Marriage is hard work, period. Parenting is hard work, period. Parenting a child with special needs, is especially hard work, period!
• 20)Trust your instincts. Don't be afraid to fight for your child and their needs. While the professionals are experts in their areas, you are the expert on your child. 5

THE KIDS HEALTH ORGANIZATION ADDED ANOTHER PERSPECTIVE:

If you are the parent of a child who is sick or has special needs, your schedule likely involves doctors' visits, therapy sessions, and waiting for doctors and insurance companies to return your phone calls. And then there's the exhaustion and endless worry.

1.Accept help from friends and family. Everyone's busy and that makes it hard to ask for or accept help. For some, it's difficult to let your kids or partner help because they may not do things the same way you do them. Or maybe letting other people know you feel stressed or over whelmed is just not your style.

2. Be honest about what you need. By letting people know how hard your situation is, you're allowing them entry into your world. How many times have you heard someone say, "Let me know if I can do anything?" And how many times have you said, "I will" – and then didn't? People want to help but they don't know how. Make a list of the things that would make your life easier.

3. Enlist other caregivers. Parents of children with special needs often feel that they are the only ones who can handle their child's care. This is certainly true to an extent but that doesn't mean that you can't get away for a few hours every now and then. By leaving your child with a trusted sitter or family member, you are teaching your child to handle change.

4.Consider home health care. Some insurance companies will cover the cost of an in-home health aide or visiting nurse for a few hours a week if your child's medical problems are chronic or severe.

5. Seek companionship. Seeking help doesn't always mean asking someone to do something. Often, what a caregiver needs most is to maintain contact with friends and family. Take time to connect and laugh with others and free yourself from your usual worries. Support groups, both online and in-person, can be helpful, too. 6

PARENTS VS. CHILDREN?

Assuring the care of children with special needs is not a question of the needs of parents vs. those of their children. The necessity is to develop working arrangements for members of the family; including mom, dad, siblings, (and if possible) relatives and friends to provide youngsters with special needs what appears to be seemingly endless assistance. Can it be done? Absolutely; untold numbers of other families have come together and learned of the joy that these youngsters can bring to the lives of their parents and other family members. •

ABOUT THE AUTHORS:

H. Barry Waldman, DDS, MPH, PhD is a SUNY Distinguished Teaching Professor, Department of General Dentistry, Stony Brook University, NY. E-mail: h.waldman@stonybrook.edu Jeffrey Seiver, DDS is a Clinical Assistant Professor, Department of General Dentistry, Stony Brook University, NY. Steven P. Perlman, DDS, MScD, DHL (Hon) is the Global Clinical Director and founder, Special Olympics, Special Smiles and Clinical Professor of Pediatric Dentistry, The Boston University Goldman School of Dental Medicine.

References

1. Witt WP, Gottlieb CA, Hampton J, Litzelman K. The impact of childhood activity limitations on parental health, mental health, and workdays lost in the United States. Academic Pediatrics, 2009, 9(4):263-269. 2. Special Learning Inc. Depression in parents of children with special needs. How to recognize the symptoms and signs. Available from: special-learning.com/article/depression Accessed February 15, 2019. 3. Laskowski A. BU Today: Help for Parents Caring for Children with Disabilities. Available from: bu.edu/today/2013/help-for- parents-caring-for-children-with-disabilities Accessed February 14, 2019. 4. Rudy LJ 11 things special needs parents need. Available from: verywellfamily.com/what-special-needs-parents-need- 4151158 Accessed February 15, 2019. 5. Clayton D. 20 Things every parent of kids with special needs should hear. Available from: abilities.com/community parents-20things.html Accessed February 14, 2019. 6. Kid Health Organization. Support for parents of kids with in special needs Available from: kidshealth.org/en/parents/par- ents-support.html Accessed February 18, 2019. 7. Bayada: Home Health Care. . Support groups for parents of children with special needs. Available from: blog.bayada.com/be-healthy/eight-support-groups-for-parents- raising-children-with-special-needs Accessed February 15, 2019.

TAKING CARE : CAREGIVER SUPPORT RESOURCES

There are support groups that can provide needed community and fellowship.

MOMMIES OF MIRACLES facebook.com/MommiesofMiracles

The mission of Mommies of Miracles is to eliminate the isolation mothers of children with complex medical needs experience daily by providing an extended network of resources, grief support, and hope.

DIFFERENT DREAM differentdream.com

This website provides resources and literature, with a blog that addresses what parents of special needs children often encounter.

5 MINUTES FOR SPECIAL NEEDS 5minutesformom.com/category/special-needs

A website for special needs puts parents in touch with other parents raising children with complex medical needs.

THE GLOBAL TRACHEOSTOMY COLLABORATIVE globaltrach.org

A non-profit collaborative with a mission to increase awareness of tracheostomy care and quality of life for those in need.

NANCY'S HOUSE nancys-house.org

A support resource for all caregivers, not just parents raising children with special needs. They are a non-profit organization for caregivers to find respite and support.

THE ARC thearc.org

An advocacy organization to promote and protect the human rights of people with intellectual and developmental disabilities and actively support their full inclusion and participation in the community throughout their lifetime.

COMPLEX CHILD E-MAGAZINE complexchild.com

Online-only magazine is free and written solely by parents of special needs children.

THE CAREGIVER ACTION NETWORK caregiveraction.org

Gives you access to forums, information, and a large community of caregivers.