The Christmas season is rolling around again and in less than a few weeks schools will close for the summer holidays, families will be finalising travel plans or everyone will finally agree that turkey does not have to be on the menu.
Many families are looking forward to the festivities, and yet there is a marginalised group who love and hate this season. For parents of children with challenges, this time of year can be a stark reminder that they are parenting from the trenches.
When the holiday season is not full of cheer, we learn to parent from the trenches
When Savannah was in school, this time of year was incredibly difficult for me. The end of the school year was also the end of the routines that sometimes held families like mine in careful balance. Many children with special needs, do not always enjoy the holiday hustle and bustle. This makes for a time of year that is challenging for families.
Parents have to go it alone when caregivers go on leave or when support from family and friends becomes scarce. For families like us, we do not simply “go on holiday or join the big family lunch”. What is fun for the rest of society can be stressful for the family with a child with special needs.
During the intense years of my mothering journey, I juggled being Savannah’s caregiver (she is twenty-seven years old now) while also raising two neurotypical children Talisa (now twenty-one) and Eli (now sixteen) without consistent help, and during some of the most emotionally and mentally painful times of my life. I learned a great deal about resilience and grace. Today as somewhat of a professional parent, I know what it takes to parent from the trenches. Especially during the Christmas season.
These are some tips that worked for my family:
1.) Prepare everyone in your family for the changes in routines. Talk together about what those changes mean for each of you. Start speaking about it now and include your child with challenges in the conversation. Use age-appropriate language to explain what events will be coming up or what he/she can expect in the next week or so. Regularly talk about the plans.
To support your conversations you can use visual schedules and social stories to give a graphic meaning to what you are saying. This is especially helpful for children who have little or no functional speech or who are non-speaking.
2.) Plan for the holiday season even if you are going to be home. If you do not have a day-by-day plan, aim to have a general plan for who you will be seeing and who will be involved from your home. Many people become overwhelmed by feeling pressured by other people’s holiday agendas. If you have your plan set out first, you will already know what is realistic for your family to be part of.
3.) Do not commit to catering or providing a meal unless you are absolutely sure you can. If you know you won’t have time, rather ask the host if you can contribute financially or offer to buy something.
If you know that your child will cope better in their own home, then offer to host a party at your place. This works especially when you are the mum whose child needs a full-time carer, and you still enjoy throwing parties. Take note of who you invite though. I find that the best guests are the ones who help out and who don’t stand on ceremony. They are usually the kind of people who will also care for Savannah during the evening.
4.) If you are hosting a party, make sure your child knows who is coming. It is also acceptable if your child does not want to join the festivities. If it is not their sprinkle of magic, it is not their sprinkle of magic. It is also perfectly fine to decline invitations when you feel it will upset your own emotional or mental balance.
You have to parent in ways most other parents won’t understand. Saying no is a “Superpower” you want to have.
Desirae Pillay
5.) Please ask for HELP. Do not try to do it all. Shopping, cooking, and keeping everyone happy and entertained, can be overwhelming for many families and no one expects you to do it all and still be the life of the party.
I had to learn how to ask for help because somehow I believed that I had to do everything on my own. I think it was partly due to my gender and my culture and being a parent to a child with special needs. I felt bad about asking for more support. But I had to learn to ask for help because “mommy-ing” was hard even with my husband and my mother’s support.
These next tips are to help family and friends who want to be helpful to a family with a child with a disability:
6.) Please consider gifting a frozen meal. Many families do not always sit down to a warm, hearty meal when they are in the throes of meltdowns or tending to a sick child. A meal that can be heated on the days when they are just too tired to make dinner is honestly one of the best gifts to give a family who are caregivers all day and all night. Some families are on special diets, but what a treat and act of LOVE if you did take the time to provide the food they can eat.
7.) Finally, when a person uses a wheelchair, it is more challenging to get around busy spaces. It is helpful when people are considerate of that. If your invite is declined on those grounds, it only means that being able to move independently and sit comfortably for someone in a wheelchair is a big deal. A family like mine would rather not attend because we know we won’t enjoy the time if our child is uncomfortable. It does not make anyone a bad friend. It just means we can look at ways together to socialise where everyone is comfortable.
The greatest gift of all is – To Not Be Judged
If we seem tired or frustrated at times because of the high-demand lifestyle we live, please do not judge us. All day and every day, we are living between your world and our child’s world; constantly explaining your world to them, and their world to you. Yet we as carers fit in neither group. Still, we do it anyway because we love our children just as much as you love yours. Being able to care for them and celebrate with them is a gift many parents like me do not take for granted. We will do anything to keep it that way for as long as we can.
This Christmas please consider families like mine in your community and be to them what you would have them be to you if it was your child who needed what our children need: Faith, Hope, and Love.
Desirae has three children: Savannah (27 years), Talisa (21years) and Eli Michael (16 years). Savannah was born when Desirae was eighteen years old and she was a single mother for a time before marrying Michael. Savannah is autistic and is a person with cerebral palsy. Michael and Desirae care for Savannah as she cannot live independently. Desirae worked as an Assistive Technology Advisor in the disability sector, served in the autism community, and is now employed in the child safety sector. She writes for the purpose of sharing different perspectives and to encourage a thinking line around being kinder and more considerate of other people’s experiences in the areas of parenting, childhood trauma and disability. She writes because she knows that Faith, Hope and Love abide.
