GSD Awareness: glass children

(as told by a GSD1b family)

The term glass children refers to “siblings of a person with a disability. The word glass
means people tend to see right through them and focus only on the person with the
disability. ‘Glass’ is also used because the children appear strong, but in reality are not.
These children often have needs that are not being met,” Alicia Maples.

Brothers and sisters of GSD kids live their own reality, where their needs may be less
complex but no less important. They are at the whim of their sibling’s health and their lives
can change just as fast. We’ve learned a lot over the years and will continue to learn and
adapt and help maintain our oldest child’s needs just as much as her complex sibling’s. One
of my biggest fears when our youngest was diagnosed was that this would drive a wedge
between them, and us as parents, and that our oldest would be forced to grow up too fast or
feel neglected. I worried that instead of creating empathy, it would create resentment.
Thankfully that has not been the case and what we’ve seen over the years (aside from the
general sisterly & “love” like bickering and stealing each others clothes and causing mayhem)
is that their support for each other is only more profound. This hasn’t been easy, and there
will always be more we can do to support our non-GSD child, but it’s a positive work in
progress. Here are some things we’ve learned and prioritized over the years:

1. Communication: about pretty much everything. Be that doctors appointments, hospital
stays or upcoming medical needs for our GSD child, communicating about our oldest child’s
needs surrounding these events and figuring out how to troubleshoot concerns they have
about how it will affect them, while prioritizing keeping their day-to-day as normal as
possible is crucial.

2. Involvement: getting our non-GSD child involved in small ways has been empowering,
and only comes at her level of interest and willingness to participate. We want to make sure
she doesn’t feel obligated to take on any caretaking duties, but welcome any support she
wants to give, without being asked.

3. Protecting our non-GSD kid’s childhood: we joke that she was born a 30 year old. She’s
an old soul and is wise well beyond her years, but we want to make sure that she doesn’t
feel the need to take on responsibilities beyond her age. There can be a need or desire in
siblings of chronic kids to not make a fuss, not need attention or not ask for what they need
because of the needs of their sibling. It’s just as important for us that she learns to advocate
for her needs as it is for complex sister.

4. Encouraging empathy, as a two-way street: positive reinforcement of empathy has been
key for both girls over the years. Both girls are very empathetic, though they show it and
internalize it very differently. We try to find a balance between encouraging empathy
between what each is experiencing, while also reinforcing that empathy doesn’t mean
taking on someone else’s pain at your own expense.

5. Quality time: as hard as it is, making sure that our non-GSD child gets quality one-on-one
time with both of us makes a huge difference. There is simply no other way to put it: it’s key
that she gets the attention she needs, even if it sometimes revolves around what her sister
may need first. This also means involving the village. Having other people who can make
sure our non-GSD child gets the time and energy she needs is a benefit to everyone.

#gsd1bstrong #curegsd1b #glycogenstoragedisease1b #raredisease

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