The Festive Season is rolling around again and in less than a few weeks schools will close for the summer holidays. While many families are making travel plans, attending honours evenings and year-end parties; families of children with extra needs or with challenges, are more-often-than-not dreading this time of year.
When the holiday season is not full of cheer
I am a mother who struggled for many years with this time of the year. The end of the school year is also the end of the routines that sometimes hold families like mine in careful balance. For many children with special needs, they do not always enjoy the holiday hustle and bustle. This makes for a time of year that is challenging for families. Many parents have to go it alone when caregivers go on leave or when support from family and friends become 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 the child with special needs.
As a mother of three, having juggled being Savannah’s caregiver (she is twenty-three years old) while also raising two neurotypical children Talisa (now seventeen) and Eli (now twelve); I have some experience in dealing with feelings of isolation and depression especially at this time of the year. I also learnt how to empower myself, to accept myself and to accept Savannah as a person who has different needs. In doing so, I could then empower our extended family and our friends on how to support us and include us so that we enjoy the celebrations that holidays memories are made off.
I hope these suggestions from my own experience will be helpful to you:
- Prepare your child with special needs for the change in routines. Start speaking about it now by presuming competence.
This means that you use age-appropriate language to explain to your child what events will be coming up or what they can expect in the next week or so. Keep talking to them, every week. 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 may struggle to communicate with you.
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 what you will be doing with your child. Too many people become overwhelmed by feeling pressured by other people’s holiday agendas. If you have your plan set out first, you will know what is reasonable for you and your child to cope with.
3.) Do not commit to cater or provide 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 say you will buy something. If you know that your child will cope better in their own home, then offer to host a party at your place. It is also perfectly fine to decline invitations when you feel it will upset your own emotional or mental balance.
4.) If you are hosting a party, ensure your child knows who is coming and what is expected of him or her. It is absolutely acceptable if your child does not want to participate in the entertaining. If they cannot handle the festivities it means they cannot handle the festivities.
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.
Often our friends and families want to help us, but they do not always know how to help:
The following suggestions are what worked for us and evolved from my desire to maintain healthy connections with family and friends while being true to what made my family different from theirs. Please feel free to share our experience with your social circle but trust yourself to share your own experience and your needs.
1.) We want to be invited and involved in holiday engagements, but we really need you to tell us in advance. We cannot do “spur of the moment”. Please do not be angry if we decline your invitation. It only means that we will not cope with what you are suggesting.
2.) We love it when you buy our child a gift. It shows us that you are thinking of them and includes them. Please ask us what our child would appreciate as a gift. Sometimes our children receive expensive toys or clothing that may not be appropriate for them. 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 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 lip balm in her gift bag.
So please ask what a child will like rather than assuming.
3.) For some families, we would appreciate a visit without the expectation that we should have a batch of Christmas cookies or a dose of Christmas cheer. Many of us will try but if we cannot muster that joyful sentiment, we would still appreciate a visit anyway. It reminds us that we are not alone, which is something we feel most often at this time of year.
4.) Please offer to spend time with our child. Yes, that might be a big ASK. We need to learn to trust people with our child, but we are often afraid to ask for fear of being told “no”’. We need the help though so we can go to the shop or wrap gifts. Maybe we can take our other children to see the Christmas lights instead of them going with their grandparents again.
An unusual idea but one that would make all the difference too: please help our child to make a special gift or card for their siblings or their parents. While this may require several visits from you and a little bit of creativity with a good Santa size gift bag of patience, do you know how amazing it would be for us to receive anything from our child with extra needs? It would be the best Christmas gift ever!
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. I know that many 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 makes it much more challenging to get around. If we turn down your invite on those grounds, it has no bearing on our relationship. It just means that being able to move independently and sit comfortably for someone in a wheelchair is a big deal. We won’t enjoy the time if we know that our child is physically uncomfortable.
The greatest gift of all – to not be judged
If we seem tired or frustrated at times because of our child, please do not judge us. All-day and every day, we are living between your world and theirs; 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 the 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 Pillay is an inspirational writer and speaker. She is married to Michael and they have three children Savannah (23years), Talisa (16years) and Eli Michael (11years). Savannah is a person with cerebral palsy and is autistic and was born to Desirae when she was eighteen years old. Life has never been easy, yet Desirae believes it is still worth living with great kindness. Desirae is passionate about parenting. Her life’s work is about sharing her truth to promote Faith, Hope and Love as a blogger, speaker and freelance writer. Find her on her blog: http://amillionbeautifulpieces.co.za/