If the holidays were measured on an anxiety scale the beginning of fall would and will always be my baseline, or the tip of the iceberg. With every day that goes by, my anxiety rears it’s ugly little head, reminding me of tasks that need to be completed; parties that need to be coordinated and attended, parent-teacher conferences, birthday parties, holiday parties, and annual checkups. Needless to say, our family is full throttle from the first fall leaf, all the way down to the champagne/sparkling cider toast at midnight on New Years Eve.
For many, school and community activities can be attended without a care in the world. However, when raising a child with special needs I am in a constant state of worry that there will be some type of over-stimulating scenario, and my family will have to leave the outing early. Which in most cases, always happens. OR, we are completely divided as a family. One parent will take our daughter to the regularly scheduled event, and the other will walk our son around the perimeter of the event, sit off to the side, go back to the car, or hang out in the bathroom and have a good cry. I typically am the one always crying. Crying because my son is having a meltdown, crying because my son refuses to wear a halloween costume to an event and I have to explain to everyone why he’s “not participating,” crying because I can’t see my daughter interact with other children dancing and singing, crying because “Karen” is giving me the side-eye, and wondering when I will step in and discipline my son. Crying because autism is SAD! I like to think of myself as a strong person. I do not let things get to me. If someone doesn’t like me, that’s their problem, not mine, sort of thing, but this; autism, gets to me. It is not something I can easily brush off. I am reminded of it daily. I want to stay positive, and focus on the things my son CAN do instead of what he can’t, but with every event that approaches and passes, my anxiety increases, and my stress levels go through the roof.
One of the harder things in managing the stressors of autism, is the constant feeling of having to explain to people why we can or can’t do certain things. Without receiving a perplexed look, or eye-roll, or being told it’s just an “excuse.” My son has been on the spectrum for a little over 2 years, I feel as though I advocate very strongly for him, and others that are on the spectrum- hence MY ENTIRE BLOG. So the very thought of someone thinking I use this as an excuse to do or not do something, absolutely infuriates me. Let me be clear, I do NOT need to explain anything to anyone, BUT the need to educate the community is prevalent in today’s times. The need to show compassion and empathy towards someone going through a similar journey is dire. Ask how a caregiver is doing. Inquire about their mental health and lend a helping hand. If all else fails and you can’t seem to fathom what the caregiver is going through. Stop and think how this must make the child with special needs feel. At the end of my mental break, I can always collect myself and move forward. However my son is not that lucky to be able to collect himself, brush himself off, and go forward. It takes time, and it takes MUCH patience on my end. I have been told there are special types of sensory rooms that simulate what a child is going through when having an overload of stimulation. This type of “haunted house” is very much real and I encourage everyone to check out their local area and see if this type of simulation is offered. See only part of the world through the lens of a child with special needs, and let me know if it’s still just an “excuse.”
The start of the holidays are my absolute favorite time of year. Though the days are long and tedious, the most rewarding part of my job is being able to connect, listen, and correct with my children. We don’t always get it right when we go into these events, that seem more like open-waters, there are a few tears, but we are learning what works and doesn’t work for us as we go. Please know you are not alone this holiday season. To the father with the daughter that refuses to wear a Halloween costume, I feel you. To the grandparents who spend all day cooking a texture friendly Thanksgiving meal, only to have their little one want goldfish, I feel you. To the mother with the non-verbal son that cannot vocalize his Christmas wish list, I feel you. To all the caregivers going through something unspoken, I feel you. You are not alone in this uphill journey. I am here as your constant reminder that you are doing an amazing job, and you are enough. Let’s chat soon! ❤