Autism Self-Care Special Needs Type 1 Diabetes

When Support Groups Aren’t Very Supportive

I remember the day I completely ignored all my responsibilities. No housework. No errands. No crossing off items on my to-do list. I just spent the entire day scrolling through Pinterest, looking at pictures of prospective tattoos. I was in search of a diabetes tattoo in particular, in honor of my daughter. We were a little over a year into her diagnosis. It was also approaching my 40th birthday and something about that big number prompted a bit of a mid-life crisis for me;-) I had the best time shopping for that ink. I turned to my diabetes support groups when it was time to narrow down the choices and posted pictures of my ideas, seeking their input. The response was overwhelming. I recieved a boatload of feedback and enthusiasm from other moms of kids with Type 1 Diabetes and spent hours online interacting with them about that tattoo. It was glorious!

That day was a turning point for me. It was the knowing that I had a huge community of people behind me, all experiencing the same daily struggles as me. I had a sense of normalcy and a tribe of people who shared my excitement for my tattoo. Not everyone got it. But, so many online cheered me on. They understood what it symbolized and they valued my ability to express myself independently. It was the first time I felt excited or encouraged in a year since being thrown unwillingly into life with Type 1 Diabetes. That afternoon, as I picked up my kids from school, I soared on cloud nine, a “high” I hadn’t known in a long time. It became clear to me around that time just how impactful my support groups were to my mental health.

But, sometimes support groups aren’t quite as valuable. I recall a scene in one of our favorite Netflix shows called Atypical, a show about a high-school age boy with autism and the family dynamics that surround him. The scene illustrates the feeling of awkwardness one may encounter when they don’t quite mesh with other members in a group. When the dad of the main character attends his first support group meeting, he refers to his child as “autistic” but is soon corrected by the leader for it. She instructs him to say “person with autism” instead. It was funny how it didn’t phase me much, since I am used to the jargon and some of the sensitive topics in the autism community. However, it really stood out to my husband. “Geez,” he commented. “For a support group, they aren’t very supportive, are they?” I chuckled a little, but it did get me to thinking.

Like every other facet in our life as a special and medical needs family, we sometimes have to wade through the sea of resources and groups we are offered, though they don’t always pan out as we hope. Just like with doctors, treatments, therapists, and education, you are not guaranteed the perfect providers or solutions for your particular situation. I think of it like with certain medications, where it might take a series of trial and error to get it right. It can be the same experience with support groups. Sometimes you just have to shop around. When you find the right fit, they can be a godsend. But, when they’re not right, they can add more stress to your already overloaded life.

In my involvement with support groups, I’ve noticed some common themes that can really ruin one’s experience:

Internal Debate

The great puzzle piece debate!

The first one that seems to come up in almost every group I’ve been apart of is internal debate and drama. People will always find something to fight about. Even within a shared community or diagnosis, there are always differing opinions. One thinks vaccines caused their child’s autism and are staunchly against them. Another thinks anti-Vaxxers are crazy and conspiracy theorists. One group finds the autism puzzle piece symbol offensive and prefers the infinity symbol instead. Another group likes the original design and thinks that those in the infinity camp are too sensitive.

Then, you have the diabetes groups who will almost always bring up the dreaded topic of the keto diet. Some believe it is the magic cure to perfect blood sugars and management, while others are skeptical of it’s long-term effects. Sometimes the process of labeling a condition stirs controversy in and of itself. There are those who like the term “special needs” while others prefer “special abilities.” As in the case of the Atypical show, there are many who prefer to describe the person first rather than the condition first as if it defines them. There are even those in the autism community who find it offensive to push for a cure rather than accept individuals with ASD as they are. And, hand in hand with this debate are those who support the organization Autism Speaks versus those who do not. Regardless of the condition, you will always find these “hot topic” buttons that trigger a debate.

Differing Levels of Severity

Sometimes within a group, there are different levels of severity. Our family attends a local support group for a variety of conditions including Cerebral Palsy, Cancer, Autism, Diabetes, and Down Syndrome, just to name a few. While we all share a common bond of parenting children with chronic conditions, our experiences are all so different and unique. Some of us are dealing with wheelchairs and adult diapers, while some of us parent the more invisible disabilities. Sometimes the parents of the higher-functioning kids have less to offer the parents of the lower-functioning. Though we all have some common themes like caregiver burnout and fatigue, our range of functioning sometimes interferes with our ability to relate to one another.

There may be enough shared interests at times to benefit. But, other times, the differences can cause resentment and heartache when parents find themselves comparing. Autism is probably one of the most variable conditions out there. Because it is such a spectrum and as the saying goes “if you’ve met one person with autism, you’ve met one person with autism,” there is a huge range of challenges, functionality and prognoses. When I first entered the autism support world, I was desperate to meet parents of high-functioning kids. I was still grappling with the diagnosis and needed to see that there was hope for my child’s future. When I came into contact with the kids who appeared more severe, it just hurt too much. I couldn’t accept the possibility that my child might never speak. Or, that he would stem, flap and toe-walk forever into adulthood. I was not at the point in the acceptance process where I could easily be with various levels of severity without leaving absolutely depressed and hopeless.

JDRF Type 1 Diabetes Fundraiser/support group with my daughter

Even our daughter experienced a touch of this to a degree. We caught her diagnosis so early that she never went into DKA and therefore, her “honeymoon period” was further prolonged than the average kid. In plain English, if you are unfamiliar with my medical terminology, this means that her blood sugars were easier to manage than most other diabetics (for a while). The first two summers following her diagnosis, we sent her to a camp with other kids with T1D to encourage peer support early on. At times, she felt unsupported by her peers there as they compared their most traumatic events and ketone episodes. Since she was still new to the diagnosis and had not yet ever gone through similar experiences, she felt like she didn’t fit in even with other diabetics. Now, she is more selective about which diabetes events she attends as a result of feeling that isolation.

Different Coping Strategies

Just as there are diferent levels of severity, there are also multiple stages of grief. Not everyone is at the same phase in their journey of processing a diagnosis, loss or traumatic experience. In my recent blog post Your Grief Is Unique, I discuss how everyone grieves differently. What comforts one person may not comfort another. Everyone has different styles and preferences of the types of things that are helpful to them. I find that when people ask a lot of questions about my kids’ conditions, it is somewhat therapeutic for me. As long as they are asking in a thoughtful and curious way rather than in judgement or with condescending opinions. It helps me feel like people care enough to try to understand what daily life is like for us. Through that process I feel supported and less alone, even if they do not share the same burdens. My husband, however, does not care for the overload of questions. He’s a bit more private and tends to approach it as “If I wanted you to know, I’d tell you.”

I’ve also noticed that temperaments vary. Some like to vent and perhaps overshare their complaints quite often. Others find the constant “Debbie Downers” annoying and prefer a more upbeat message. The pessimists don’t feel supported when they don’t feel welcome to share all their emotions, while the optimists don’t feel encouraged by the constant barrage of negativity. I find I’m one of those in the middle. I am resentful when people rush me through my grief process or when they only want to listen when I’m upbeat and positive. But, on the other hand, too much negativity in a group can make me feel worse.

The other downside of support groups is you tend to encounter a lot of “worst case scenarios.” When you grow close to people in a group, you are impacted when they experience hard times. Every time a parent loses a child to diabetic DKA or hypoglycemia, it knocks the wind out of me. When you witness so many of your greatest fears for your own child play out in front of your eyes, it is hard not to live in a constant state of panic and paranoia. Grieving alongside members of your community can sometimes exacerbate your own trauma.

Not Respecting Boundaries

We all have different levels and expectations of participation, as well. Kind of like church, there have been times when I’ve just wanted to be a fly on the wall. I didn’t want to have to make commitments or feel pressured to volunteer and join every service project. But, other times where I longed for that sense of community and belonging. Some people are looking for different levels of commitment in their support.

Coffee dates: my ideal support group!

I’m not always enthusiastic to babysit everyone’s kids or come clean their house like we are living in a commune. It is wonderful if others express their support through service. But, I’m usually looking for a different type of connection. A nice coffee date once in a while to chat about life or perhaps a quarterly meeting or get-together where we share our inspirations and struggles. Under no circumstances do I want to be bombarded with messages and texts every day, asking me why I haven’t checked on so-and-so in the last hour.

Nor do I wish for unsolicited parenting advice. If I wanted to be lectured on how I really should get my son on that gluten-free/casein-free autism diet, I would have turned to people that are NOT in our autism community (the very people who should understand how hard it is to get a picky eater to eat regular food, much less expect him to give up milk, cheese and goldfish!) It amazes me how just because one person has success with a particular approach, they believe they suddenly have the right to tell everyone else how to do things. It is one thing to share what worked for you, but quite another to push or condemn others who are approaching things differently. Just because your kid on the spectrum isn’t violent with others doesn’t mean other kids who are (or their parents) should be judged. Just because your marriage didn’t work out doesn’t mean someone else shouldn’t try to heal theirs. Just because you have certain therapy providers that you view as quacks doesn’t give you the right to badmouth others who still choose to go there.

The bottom line is that we all need support. Like with any relationship, we have times when we give and times when we take. Part of our service to others is recognizing that it is okay to be different and that we all have different needs. When we build others up, we also build up ourselves. It is part of being in a community, something greater than ourselves. Perhaps you have not found your community yet. Perhaps your experiences have been less than favorable and your support groups have been “not very supportive.” I encourage you to keep searching. When we unearth our tribe and activate healing through connection, we discover there is power in solidarity.

“When you can’t look on the bright side, I will sit with you in the dark.” -Alice in Wonderland

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