It's that time again when my baby boy (not so much baby anymore) has his birthday and this year he turns 6! He has come so far, and exceeds all expectations with a big personality to match. With that light at the end of the covid tunnel looking brighter and brighter each day, many children have been having birthday parties where possible. It’s been wonderful to see the children having social interaction outside of an educational setting, where they are free to explore different environments and play for the sake of playing. On the other hand, birthday parties for a child with any need more than the norm can be very challenging.
When Jake was 3 he was invited to his first school birthday party. It was such an exciting prospect! He was being fed via a pump with artificial nutrition then, and having not been in a birthday party setting before with him on such a scale as this one, I totally underestimated how much it would overwhelm him, and me in fact. It ended in us both crying in the car and having to leave with the amount of food being too triggering for him with the sight of other children eating. We all have bad experiences at parties and this sure was mine. Fast forward 3 more years and we are in a very different place with the feeding tube needed for medication only. Jake can be among friends and family and share a meal. I can finally say that I am in a place where I can take him to a party and not have that sick feeling in my stomach, worrying what may trigger him or that he won’t eat as much as I used to.
When you are going to a party organised by someone else it's a good idea to reach out and ask a few questions, to ensure when you get there all eventualities are covered. You can be prepared for the very worst! For me it has always been that Jake's ostomy bag needed to be changed. You can imagine my horror when turning up to some parties in the early years with no disabled toilets, meaning I had to take Jake to the car and do it all on the back seat. Some older community halls don’t have disabled toilets of adequate size or even at all I have found. If you are really lucky you will find somewhere with them that’s lovely and clean and not too far from the party action. Check if you need a radar key to access them in more public spaces and if so it might be worth asking your healthcare providers or buying one online here if you don’t have one already. Could there be risks or limitations that the space could pose to your child? If so, communicate them to the venue and see if there is a way around it.
With my little one having coeliac disease I always used to feel awkward and overly apologetic when it came to food. It was usually saying I would need to use the feeding pump and parents looking like deers in headlights where they didn’t have a scooby doo what I was on about. Then there was asking what the food was when Jake started eating again and having to ask the standard questions regarding cross contamination. It still blows my mind to this day that places advertise food as gluten free, yet cook gluten laden party food in the same fryers and think its ok! I always ensure I ask how food is prepared even down to separate areas. We all know this is standard food safety laws but Natasha's Law introduced in October 2020 just shows that things are still missed, and for me there’s no such thing as asking too many questions when it comes to my child's health and safety. Human error unfortunately still happens and I have found members of staff tell me he can eat there but not with 100% certainty in their voice. When this happens I always ask for a second opinion or ideally the manager.
It may sound a bit cheeky but I also ask if there are party bags or a cake so that I can be prepared and bring an alternative. I always make sure I say I will bring my own so that Jake isn’t given one and gets upset when I have to take things from it. I will then try my best to match it as closely as possible. I haven’t met a parent that hasn’t been understanding about it. We have even had parents buy a separate free from cake just so Jake isn’t left out. This is something I would never expect at all and was touched by the kind gesture. Finally, if your child gets overwhelmed by too much noise for a prolonged time or experiences sensory aversions, rather than not going completely there may be a quiet place at the venue for them to go to one side when needed. I would warn the host that we may need to leave early. Whenever your child has a party to go to next I hope they have the best time!
Until next time, Rach x
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