These Are OUR Children: How we can all support families with additional needs

When her daughter was a year old, my good friend, Amy, went to see a therapist to process the feelings she was having raising a child diagnosed with Down’s Syndrome.

Amy was expecting to discuss the grief and loss she was experiencing as she saw her daughter’s peers progress developmentally in ways that Anna was not. The therapist kept repeating, “There is a special bond between mothers and children with special needs”.

I remember Amy’s disappointment when she repeated the line to me. “I felt like she didn’t understand; like there was no place to explore how I was feeling. -- to talk about the full experience”.

As a therapist, I would like to think that, given the same situation, I would have provided Amy with what she needed -- support for her experience as a person independent from a bond, special or not. Yet the reality is that parents of neurodiverse and/or disabled children often feel like their feelings and struggles are not understood or acknowledged by therapists, educators, friends, or even family members.

Raising a child with learning challenges or developmental delays is not something that just happens to other people. According to the US Center for Disease Control, approximately 1 in 6 children aged 3–17 years are diagnosed with a developmental disability. These are our children, our nieces, and nephews, the children we teach. Providing them with support and services is essential but an important part of the equation is often left out. Chances are we all know parents who are struggling to make sense of a complicated diagnosis. We need to understand how they feel and support them throughout the journey.

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How do we best support the needs of the parents in this community? To learn more, I explored some of the literature written on the emotional impact of raising a child with a neurodivergence or disability and interviewed 6 parents. There are several themes that emerged from their experiences.

Common emotions

One of the best sources I found to describe the emotional impact of raising a neurodivergent and/or disabled child is the website Affinity Hub. It has a comprehensive, alphabetical list of the common feelings that parents reported during an online survey conducted in 2017/18. It includes the full range from positive to what we consider more negative emotions. In my interviews with parents, these are the feelings that were mentioned most frequently.

“Our house became a lonely house”

Almost all the parents I interviewed reported feeling lonely, isolated, and, at times, misunderstood. Parents described a longing to be able to talk about the full experience of raising a neurodivergent and/or disabled child but felt that other people (sometimes in an effort to be compassionate), were dismissive or lacked understanding.

Amy explained, “I was sometimes treated like a child who was going for a vaccination, as if people were saying, "This will just hurt a little and then it will be fine’”

Other parents reported being told, “Everything will be fine” or “My child does that too” and “Aren’t we all just a little autistic?” One parent said, “I hear people complain during the coronavirus about their children not seeing their friends. My child doesn’t HAVE friends.”

While parents acknowledged that these responses often come from people with good intentions, it made them feel alone in their experiences. This sometimes led to parents retreating into themselves or their family in an effort to manage the complex feelings and decide how to manage in the world. “Our family was always strong. Problems came when we came into contact with the outside world,” one mother explained.

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Bungee Cord Parenting

Many of the parents I interviewed discussed a persistent feeling of worry -- about day to day issues and about the future. They thought frequently about whether they were getting the right support for their child, whether their child was achieving their potential if their child would live a good life. Some reported, especially in the beginning, feeling embarrassed about their child’s behavior in public. Several participants in my small study who had older children said this experience faded with time and they found themselves not caring about the reactions of other people.

Depending on the diagnosis/issue, the worry about a child’s well being does not necessarily end when a child reaches adulthood. One mother of an adult with learning and developmental delays reported feeling like there is a bungee cord attached between her and her son --whatever he experiences impacts her in a direct and profound way.

“I Don't Want Her To Be A Mascot” versus “She is not just a late walker”

Parents frequently mentioned feeling frustrated by the lack of services available for their children and the need to continually advocate for what their child needs.

Several mentioned the importance of following parental instincts. They were told their early concerns about their child’s development were “nothing to worry about” and then later realized there was an issue/diagnosis. One parent mentioned that schools and treatment providers need to, “believe these families” and listen to their experiences. Another parent said that she felt families needed to prepare to fight for services and understanding.

Another frustration was in finding the balance between challenging their child to achieve their full potential and not having unrealistic expectations of what they can do. Parents said this was often an issue in school. Amy said clearly, “I don’t want my child to be the mascot” meaning that people see her as “cute” but not able to accomplish and achieve what other children can. She described a situation in which some children with developmental delays were playing basketball and being cheered simply for making baskets. She felt her daughter was good at basketball and needed to work on her defense, not just be encouraged in a patronizing way with low expectations.

On the other hand, some parents felt people had unrealistic expectations of their child. One parent explained that her daughter is not just slower to develop the same skills as other children -- there are certain things she may never be able to do. Another parent described asking a school to provide visual learning tools for her son but the school refused. Participants reported that some teachers/providers think their child is being willful or manipulative, instead of understanding that they can’t do a certain task or might need help to do it in a different way. This is a particular challenge for children who do not have a visible disability.

Advocate Fatigue

Constantly needing to advocate and educate other people about their child left many parents feeling exhausted. Having to “rise to the occasion” day after day creates fatigue and adds to sadness and frustration.

Parents report having to hold many different roles. “I was a parent, a consultant to others, a consultant to my child,” one mother described. She said that she worked intensively for 4 years from the time her child was diagnosed with autism before finally feeling like things got better. However, after things improved for her son, her fatigue was apparent. “I fell into a difficult time. I had to change how I treated myself and change how I let others treat me to become a normal person again”.

Higher Highs and Lower Lows

The parents I interviewed all described feeling joy at small accomplishments that they might have overlooked if their circumstances were different. “Walking and crawling -- we were so happy,” one mother explained.  Another described feeling like all of her emotions were more intensified -- the highs and lows felt more intense than before.

Parents often felt pride in the improvements their children made and in their ability to manage adversity. They also reported loving and admiring their child for all of who they were, not in spite of but because of their differences. One parent explained, “Our son is a special person. It was not a problem for us”. Another reported, “He’s interesting. He is weird in a wonderful way. I value this”.

These experiences mirrored what Elizabeth Larson reported in her study, “Reframing the Meaning of Disability to Parents: The Embrace of Paradox”. This paradox, she explains is, “... the internal tension of opposing forces between loving the child as he or she was and wanting to erase the disability, between dealing with the incurability while pursuing solutions and between maintaining hopefulness for the child’s future while being given negative information and battling their own fears.”

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How do we make the changes needed to support families?

When I first started researching this guest blog, I envisioned writing an article that would simply identify what parents of neurodiverse and/or disabled children were feeling. I hoped that it would somehow affirm and validate their experiences. While I still hold that as a hope, a new imperative arose as I interviewed these families.

Parents of children with learning disabilities and developmental delays do need support and a place to have their feelings recognized and heard. However, I feel like much work needs to be done to educate parents of typically developing children, to change systems set up to work with these families, and to make space for a wide range of people and their unique way of being in the world.

It was the voices and the struggles of these parents that led me to the realization that they don’t need to do more, we need to do more. One parent wondered why the only way to talk about development was to compare it to what was “normal”. Another noted, “We need to make room for behavior that is different in the public realm”. Yet another said, “Why can’t we see a child who is different as an opportunity to be inclusive? They are still a child and still want the same things like to have friends and to play.”

I have therefore changed my recommendations from what parents with children who have additional learning can do to what we can do as a society to support families and neurodiverse and/or disabled children. Here is what the parents said would help:

Just listen

You don’t need to be an expert to help. Ask what the family is experiencing and listen. Ask what they need. Be open, be accommodating.

Don’t judge  

If you see a child throwing a tantrum in a playground or acting in a way that seems atypical, try not to come to any conclusions about the parents, the child, what you would do or not do in that situation. Support, ask if you can help, listen.

Don’t give advice

Many parents said they found it very frustrating to receive unwanted advice about their child’s issues. Each child is different and most parents have read books, consulted with experts, and learned what their child needs already.

Don’t compare

Try to avoid comparing children to each other, regardless of whether they have additional learning needs or not. Each child is unique and has her/his way of being in the world and should be valued for who she/he is. Comparing can easily make one child seem or feel inferior and is not fair to the parent or child.

There is a special bond between parents and neurodivergent and/or disabled child. However, the experience is complex -- frustrating, lonely, exhausting, and joyful. Parents and children need space to fully experience their struggles and emotions. Amy expressed it best when she said, “I want people to hold two pieces at the same time. I am a parent like you but also know I am a parent of a child with other needs”. By listening and being open to differences, we too can experience what one mother said her son gave her -- “a different window to the world”.

I would like to thank all of the parents who shared their stories with me -- Amy, Paula, Lili, GunduLa, Susan, and Rebecca. I found your experiences moving and inspirational.

Stephanie Johnson is a clinical social worker with over 20 years of experience working in international communities around the world. She consults with schools and counsels expats to help build healthy systems and happy lives abroad. She currently lives in Croatia and can be found at https://www.stephaniejohnsonconsulting.com/.

References

Affinityhub.uk, www.affinityhub.uk/1/Welcome.html.

“Increase in Developmental Disabilities Among Children in the United States.” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, 26 Sept. 2019, www.cdc.gov/ncbddd/developmentaldisabilities/features/increase-in-developmental-disabilities.html.

Kelly, Angela, et al. “The Emotional Impact of Parenting a Disabled Child.” Special Needs Jungle, 14 May 2019, www.specialneedsjungle.com/the-emotional-impact-of-parenting-a-disabled-child/?fbclid=IwAR2ACDFlQxobFJHsafVjo_ZTeNOD0y6f7LTD6St8mhKbV9jP5OmeREQ9kus.

Larson, E. (1998) ‘Reframing the meaning of disability to families: The embrace of paradox’, Social Science and Medicine, 47(7), pp. 865–875. doi: 10.1016/S0277-9536(98)00113-0.

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