Gatherings can be challenging for our GFPD warriors and their caregivers, especially when being held in environments that are not accessible or when others do not understand the disability. Our GFPD families have shared some of their best tips to make gatherings more inclusive of people with peroxisomal disorders, as well as people with other types of disabilities.
Check out the following tips to learn how you can help support your loved one with a peroxisomal disorder and their family!
- Reach out to the family (or individual with a peroxisomal disorder), ask them how you can make their visit to your home more comfortable, and then make the changes to better support them.
- We may not be able to eat or drink what you are serving, so please don’t question, make comment or stare if we bring our own meal to your home.
- Ask about the lighting! Flashing and moving lights can be very overwhelming for some individuals while others may enjoy it. Flashing lights can also cause seizures in some individuals. Depending on the types of vision loss a person has, a room with more or less light may be helpful. We understand dim light and even candlelight may provide a beautiful ambiance, but it can be a safety issue for many of our families.
- Uncluttered spaces and open walkways are very helpful for those with low vision, mobility devices and/or other equipment.
- A private area ready for us to change our child’s diaper/clothes or maybe even have a few minutes for a much-needed sensory break is always appreciated.
- Noisy environments may be challenging for those who are deaf/hard of hearing. Keeping the music off or at a lower level helps create a more ideal listening environment for our GFPD warriors so they can hear what others are saying.
- Going out to a restaurant? You can call and talk to the restaurant ahead of time and request a table in a well-lit area, a corner that may be quieter, etc.
- Please include a place at the table for my GFPD warrior and they can decline seat, if needed. If a wheelchair or other equipment are needed, then please ensure a clear path and space to access the table and other areas.
- Our GFPD warriors may be incontinent, get sick or drool, and accidents do happen, so please discreetly and respectfully let us know beforehand about any furniture to avoid sitting/laying on. If this makes up a large part of your home, then your home may not be the best place to host our family.
- Please don’t assume because our GFPD warrior doesn’t verbally communicate that they do not want to be included. Acknowledge, talk to, and include all of us!
- Planning an activity? If so, do you know if everyone is able to participate? If not, there are lots of ways to adapt games and other activities.
These tips may seem obvious, but they are very frequently the reason a GFPD family may decline an invite to a gathering. Watching our children be ignored or left out is not only isolating for our children, but hurtful to us. If the party moves around from one room to the other, then make sure everyone can move with the group and is not left behind.
Finally, please do not be upset if we decline your invite to join you for a gathering. For many reasons, it can be extremely challenging for some of us to participate in big gatherings or go to another person’s house. Sometimes we may find it too hard emotionally. We are happy for you and only want good things for you, however, gatherings can still hurt and be overwhelming at times for us. We know you may not understand and appreciate your patience and kindness when this happens. Thank you for not pushing us for answers and not making us feel bad for choosing what we feel is best for our GFPD warrior.
If we do decline, please consider offering for us to pick up or to deliver us some to-go plates. You could also include us by sharing to-go plates of dessert and having a set aside time for everyone to say hi and visit with one another virtually. And lastly, please continue to invite us. Our decline and not attending may very well not be what we want to do but feel we must do.