Birthday Butterflies

Tomorrow is my daughter’s 12th birthday. What are we doing you may ask? Having a party? Having family/ friends’ round? The answers are no.

For the last few years Isabelle has struggled with the emotions that come with her birthday. She feels excited which gives her tummy butterflies but to her this also signals anxiety and something to be worried or scared about. I can literally see the closer it gets to her birthday the waves of emotions and feelings that engulf her, and she just runs out of space for them and doesn’t understand what to do with it all.

For the last couple of years, we have stripped back what happens around her birthday. We know she won’t want friends over or many family members to visit so we make sure that family are aware of this. Isabelle does not like to talk about her birthday unless she is the one to initiate that conversation, so we respect that and only talk about it when she wants to. Last year she did not want a cake or balloons so that’s what we did.

So far this week she has stayed awake all night on Sunday eve and for the past couple of nights she has not settled to sleep until 1 in the morning and we have had to have the TV on as a distraction until sleep comes. Its so hard to watch as although we know it is excitement and a positive feeling that causes her to behave this way, to Isabelle it causes more than that. She will have tummy cramps and nausea and work herself up to the point I just want it to be her birthday as I know on the day she suddenly relaxes and the emotional bubble that has been building all week bursts.

I think as a parent of an autistic child, the hardest part about celebrations and things that as a parent you take for granted due to remembering your own childhood, is understanding that we must stop thinking about what we think our child should have on their day but focus on what they need on that day.

I still sometimes get upset that Isabelle doesn’t celebrate in the same way as I remember doing so myself as a child or when I see other people’s children handing out party invitations etc, but then I must remember that all that doesn’t matter. What matters is that Isabelle enjoys her day in the way she can and wants to. If she didn’t want to celebrate it at all when she gets older which my eldest daughter already does, then that’s ok. I will have a moment to myself where I will imagine what the day could have been, but then I will continue to respect their needs and continue the day in the way they need me to. At the end of the day, we are all different whether we have autism or not and we don’t have to do things that make us uncomfortable.

If you find yourself in a similar situation, then my best advice is just go with it. You will learn as each year passes what suits your child’s needs. Its important to talk to family to ensure they are respectful and understanding if your child cannot see people on their birthday. I know it can be easy to feel pressured to living up to an expectation and naturally family and friends will wan to show their love and give gifts to your child but it’s helping them understand that they may have to do things differently. I always make it very clear in the lead up to Isabelle’s birthday how she is feeling about her birthday and communicate anything such as whether family will be able to visit or if its best just to drop off their gift and see her another day.

We are not being rude or ungrateful, we are simply putting our child’s well being first. We quite often look over past birthday photos and videos which Isabelle loves to do to help remind her of the things she does enjoys such as opening presents. Also, we try and just normalise the rest of the week as much as possible and don’t have any extra things on that may add to Isabelle’s angst. Last year Isabelle was still in School but got so worked up the night before her birthday she made herself sick. She had been worrying about other children singing to her at school and about giving sweets out at the end of the school day.

So, we made the decision to keep Isabelle home on her birthday. The relief that Isabelle expressed when we said she could stay home for her birthday was so immense. Yes, we could have still sent her in as I know some people will have the opinion that you shouldn’t help them avoid things and they need to learn to cope but in certain situations you must weigh up the options. We could have sent Isabelle to school, and she probably would have felt unwell all day, worrying about people making her centre of attention which she hates or letting her stay home where she could enjoy her special day in a place, she felt safe and comfortable and not feel ill all day. Its an easy decision to make.

School was understanding of the situation, but I didn’t really care what they thought as I was going to prioritise Isabelle’s needs regardless of what they said.

This years Isabelle is at home as she is home educated but those butterflies are still in her tummy so we will enjoy a quiet day at home doing whatever Isabelle wants to do.