BY DR. JENNIFER GAZDA, LCSW, CMC, CDP; AND TOM DEAN, MPA
Parenting can be both challenging and rewarding as we navigate our children through various stages of their life cycle, and as we proceed through our own as well. When a child is diagnosed with a developmental disability or complex medical condition, there are additional challenges parents and their children encounter. The Centers for Disease Control and Prevention (CDC, 2025) reports that one in six children are diagnosed with a developmental disability between the ages of 3 and 17. The impact that this has on parents and their families is significant and can greatly affect their ability to provide for the necessary care needed for their children.
When children are diagnosed with any type of developmental or medical impairment, the parent can feel devastated. If the parent has strong protective factors such as a solid support system and a stable job with a healthy income, they are likely to have more resilience. Higher resilience allows parents to be able to handle the emotional shock and the associated stress that tends to follow such diagnoses (Rakap and Vural-Batik, 2024). What happens when parents do not have the support needed to overcome these challenges? More so, how will this impact their children’s outcomes?
HEALTH AND EMOTIONAL IMPACT
Often, children who have a developmental disability or medical condition have these for their lifetime and cannot necessarily be cured. Parents in these circumstances face the need to be the primary caregiver for their child long past the age of 18, when other parents often are seeing their children off to college or the workforce. According to the National Council on Aging (2022), when parents are serving in the role of caretaker long-term, they are at a higher risk of having depression and anxiety, obesity, short term memory problems, a weakened immune system, and chronic diseases.
The depression and anxiety that can often occur in parents can cause the parent to freeze and be unable to make decisions or follow through on care for their child. This often occurs during times when the child may need the support and help the most, but the parent needs to find a way through their own pain and suffering before they can be at their best to help their child. Pauline Boss’s (2006) research and work on ambiguous loss can be applied to these parents who are mourning the loss of the child they imagined they would have but are still loving the child that is with them today.
Additionally, there can be stressors of financial hardship. Can the parent afford all the out-of-pocket costs for their child’s care? Does insurance even cover all the treatments that are recommended? As cost of living rises, so does the cost of care, and it can place a financial burden on parents, especially single parents or a couple trying to live off of one income due to the significant needs of the child.
As parents are navigating their child’s journey, they may experience feelings of social isolation (McGlinchey et al, 2024). Former friendships and relationships could become strained or unable to be maintained due to the time and attention parents need to give to their child, which can further perpetuate a cycle of depression. Parents can often feel alone on this journey and not know where to go or who to turn to for help. Some parents report medical providers cause further confusion and frustration by giving conflicting guidance or information, thus causing the parent to feel judged by the provider (Dodds and Walch, 2021).
FATHER’S PERSPECTIVE/NEEDS
Of particular interest, much of the existing research does not focus on fathers of children with special needs. The journey and thoughts of one father is shared here to give you some insight into the lived experience of parenting a special needs child from a father’s perspective.
I first realized that my son had some level of special needs in kindergarten. He had a very difficult time with transitions and would exhibit behaviors when he did not have control. The school claimed to have support for special needs, but we found out that our son would be placed in the coat closet when he exhibited behaviors. He had a hard time with loud noises and would lash out at the security when the whistle was blown. The school did not seem to understand our son any better than we did. We wound up transferring him to a private school for his second semester, and he actually did quite well there, so we began to wonder if it wasn’t just the environment. He had always been quite advanced in learning and language skills, so we wondered if he was gifted and exhibiting behaviors out of boredom. For first grade, we again tried a new school that had an easier commute, but the behaviors resurfaced, and we found ourselves once again facing teachers and staff who clearly did not like our son. On one occasion when my wife was volunteering with the class, a staff member saw her assisting our son on the stairs (he was born with hypotonia, and struggled with stairs and climbing), and she boldly told my wife, “You don’t need to help him, he’s a trouble-maker. We don’t like him!” We were appalled! From kindergarten to third grade, we had our son in five different schools until we ultimately decided to homeschool him. This was very challenging for our household, as my wife became a full-time teacher and I had to be the sole income-provider. When he was about 6 or 7, we had him tested and were given a diagnosis of PDD-NOS, which was later changed to Asperger’s, which was again later changed to ASD. Having a name for it, I think, ultimately helped us as a family navigate his needs better than we had without a diagnosis, and so I don’t recall feeling any degree of shock by the diagnoses.
For support and understanding, we tried to attend different support groups, but we found that our kid was too “normal” compared to the children of the other parents in the group. Our son was verbal, if anything too verbal. He did not bite us or have hitting episodes. He could express himself well and he would give us hugs and kisses. So, we found that our story was very different from the other parents. We had wonderful friends and family who tried to understand, but we often found ourselves having to explain our son’s actions or defend our parenting style. We had family members and teachers advise us that our son just needed more discipline and some even suggested spanking him. But we knew this wasn’t the answer. We felt judgment whenever we were in public because of his behaviors that would be inevitable. We even felt judgment from friends and family and struggled with this for a very long time. It certainly impacted many relationships. So, we found ourselves engaging in social activities less and less. We couldn’t leave him home with most sitters, so we relied on a very small network of people that we knew (at least slightly) understood him and that we could trust. Still, it was hard to arrange for this on any regular basis.
Despite all of that, I’d say the greatest challenge for me was trying to find a connection with my son. Ironically, he shared many of my interests, (video games, art, board games, movies) and so we engaged in these activities quite often. But, he would still retaliate against me at every turn. He continues to do so, despite all my efforts.
Our son is 22 now, so he has matured in many ways, but he still struggles socially and emotionally. Throughout most of his youth, every day presented a new challenge. While it is no longer an everyday thing, it is not without challenge. We want him to thrive and find his way in life, but we still struggle to get him to prioritize his responsibilities each day. He works for my office part-time, and I have had to be clear with him when I am speaking to him as Dad and when I am speaking to him as his boss. He still struggles to differentiate, and so we find ourselves at odds sometimes. My wife and I always say that we will never stop trying, and we won’t, but my biggest concern is what will happen to him when we’re gone? Who will have the patience to try to understand him? Who will love him the way we do? And, will he be OK? I don’t know the answer to any of those questions and perhaps I never will, but we have to trust that he will be OK.
The only advice I could give to young dads facing similar challenges is to not give up. Don’t accept the teacher or provider who tells you there is nothing they can do and that perhaps you need to change your parenting style or discipline your child more firmly. Trust me, I tried all of that and nothing like that ever worked. Just love your child the best way you know how.
EFFECTIVE SUPPORTS THAT MAKE A DIFFERENCE
Based on this father’s lived experience and existing bodies of literature, parents of children with special needs would benefit from increased resilience. This can be achieved by connecting with other parents with special needs and maintaining connections with others and having some type of faith or hope for the future (Dodds and Walch, 2021; McGlinchey et al, 2024; Rakap and Vural-Batik, 2023). Of great importance for anyone who works with parents of special needs children is to know that your words and tone have a great impact on the well-being of parents. If you disagree with the way a parent is handling a situation or feel there are better methods, try to take their perspective, provide them with education about why you think what you do, and take the time to listen to them. If a parent feels judged or mistreated by your or your medical team, you may just have lost your ability to help their child.
REFERENCES
Dodds, R.L. and Walch, T.J. (2021). The glue that keeps everybody together: Peer support in mothers of young children with special healthcare needs. Child Care Health Development 48:772-780.
McGlincey, C., Harniess, P., Borek, A.J., Garrood, A., McDonald, A., Boyle, F., Logan, S., and Morris, C. (2024). What aspects of health and well-being are most important to parent carers of children with disabilities? Health Expectations 27:e14085.
Rakap, S. and Vural-Batik, M. (2023). Mitigating the impact of family burden on psychological health in parents of children with special needs: Buffering effects of resilience and social support. Journal of Applied Research in Intellectual Disabilities 37:e13179.
https://www.cdc.gov/child-development/about/developmental-disability-basics.html (June 2, 2025 publication).
National Council on Aging (2022). https://www.ncoa.org/article/caregiver-stress-the-impact-on-physical-health/
Dr. Jennifer Gazda, LCSW, CMC, CDP, is regional director for Arosa, a provider of home care and care management services throughout the United States. Jennifer Gazda has over 20 years of experience as a social worker in the Chicagoland area and has vast experience in case management as well as clinical supervision to new case managers. Jennifer currently serves on the editorial board for CMSA, as well as a director for the Chicago chapter. Jennifer is on the board for the National Association of Social Workers – IL Chapter, and is the unit leader for the Aging Life Care Association Illinois unit.
Tom Dean, MPA, holds a Master’s of Public Administration in Health Services Management. He has 10 years experience working as a licensed nursing home administrator at multiple nursing homes in NJ and IL. Through this experience, Tom gained an extensive knowledge of nursing home regulations and resident rights, as well as the care issues impacting seniors living in nursing homes. Tom also was an adjunct professor with Wilbur Wright College for 9 years, teaching courses in the Nursing Home Administration certificate course program. Tom is the owner and lead care manager of TD Care Management LLC and TD Guardianship NFP in Chicago.
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