Tips for the Christmas Season for parents in the trenches – parenting children with special needs

Tips for the Christmas Season for parents in the trenches – parenting children with special needs

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 and enjoyable 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-five years old now) while also raising two neurotypical children Talisa (now nineteen) and Eli (now fourteen) without consistent help, and during some of the most emotionally and mentally painful times of my life. I learnt 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 the 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, 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, my culture and that I was still shrouded in shame for being pregnant when I was a teenager. I thought to be connected to my extended family and friends, I should not be any more of a bother than I had already been. But I had to learn to ask for help because “mommy-ing” was really hard even with my husband and my mother’s support.

These are the tips I found myself expressing when I was asked “How can I help you?”

1.) Families of children with disabilities want to be invited and involved in holiday engagements, but often need to know in advance. It can be complicated to do “spur of the moment” activities. Please do not be angry if your invitation is declined. It only means that we know we won’t cope with the sudden activity.

2.) Gifts for a child with special needs will be welcome and appreciated. It shows us that you think about our child. It can be even more meaningful when you know what is meaningful to our child. You might be surprised to learn that what will delight our child the most may not be the latest must-have item.

Case in point: My daughter Savannah is obsessed with lip balm. Not lipstick but lip balm. Yet she never uses the lip balm. However, she knows exactly how many she has in her collection and loves holding it in her hand as a comfort item. She is thrilled when there is a lip balm in her gift bag. Please ask the child what they would like rather than assuming.

3.) Please visit without the expectation of having a batch of Christmas cookies or a dose of Christmas cheer ready. Families want to be part of the December glow, but sometimes some challenges are just too hard. An old fashioned visit would still be appreciated. It is a reminder that we are not alone, which is the real sentiment we are seeking, particularly during the Christmas season.  

4.) Offer to spend time with our child with challenges. That might be a big ASK but parents need people who are willing to earn their trust when it comes to their children. Most times they are afraid to ask, and family and friends are afraid to offer. Parents need help though so that at the very least they can go shopping or wrap gifts in secret.

An unusual idea but one that would make all the difference too: help a child with special needs to make a special gift or card for their siblings and parents. This may require several visits from you and a little bit of creativity with a good Santa-size gift bag of patience. In the end, it will be amazing for mums, dads, brothers and sisters to receive a gift from the child with extra needs?

It would make the best Christmas gift! 

5.) 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.

6.) Finally, when a person uses a wheelchair, it is more challenging to get around busy spaces. 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. The family would rather not attend because they know they won’t enjoy the time if their child with a physical disability 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 (25 years), Talisa (19years) and Eli Michael (13 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.

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