My son is diagnosed on the autism spectrum, but it is quite common for people who are not around him often to state they would never know he has autism, or if they are aware, they’ll comment how amazingly he is doing, which is most definitely true. I realize I should probably be comforted by these comments, that I should focus on how far my child has come in the last few years, that I should recognize and appreciate the simple fact that my son is an exceptional little boy in so many ways. But sometimes it is frustrating for me as his mother, as the person who spends every single day and most of his waking hours with him, to feel the need to explain both myself and my child to pretty much everyone we know.
Without being in this world every day, without living each and every morning, afternoon and evening, without managing some of our day-to-day challenges or unique situations, I feel it is nearly impossible to explain certain traits or characteristics that impact my son, because many times the meltdowns or difficulties are the culmination of so many factors that other people don’t experience the same way.
There are traits and characteristics my son has that can be quite common for those on the autism spectrum; some of these have become less prevalent over time, yet many of these traits are simply a part of who he is, and we accept what he needs and how we must adjust accordingly in order to allow him to enjoy life and grow as a person. My child struggles with sensory processing and can become easily overwhelmed, especially during major changes in our schedules, routines and environment. This is most evident during the holiday seasons, when school schedules are reduced, long breaks from our normal routine occur and we are spending our time at family gatherings and parties or traveling more often away from home. Because my son is doing so well, has grown so much and continues to expand his capabilities in all areas, it can be easy to forget how challenging certain situations can be for him. Even my husband and I are guilty of this, because we often fail to recognize our daily lives are very structured and routine.
Explaining sensory overload to even those closest to us is hard; as a mom, I still worry about what other people might think. I assume most people probably consider some of what we allow during holidays or vacations as simply “lazy” or “permissive” parenting — yet the truth is there are real reasons behind why we do what we do, why we make accommodations, and why my son may struggle in new and different environments. For someone like my son, noises can be unbearable, so the crowds and the sensory overload that often accompany family gatherings can be difficult.
Sometimes, he needs to have downtime; he needs to have a safe place to retreat to and regroup. This may entail an iPad movie or game with headphones, and it may look like he is ignoring everyone or being rude. He may not be able to sit at a family dinner; he can be picky about what he eats, so we pack food every time we leave the house. He requires physical activity and can have trouble if he is unable to get the type of input he needs to regulate his body. He thrives in structured environments, and the lack of structure that accompanies our holidays or down time can seem to be fine to outsiders for a day, but we often experience the impact of the lack of structure during the following day or days. He can participate and have fun in the majority of outings and experiences we do as a family, but it is not without its challenges for him. If we sleep out somewhere, have a different bedtime, do not have our normal routines, visit with a large number of people and experience many new or different venues or things, my son will usually go along with it and have a wonderful time — yet the next day or two can be more challenging than we have seen in a long time as a result.
I believe in seeing the good, in focusing on the positive and on appreciating the blessings in life. Just because I recognize my son’s challenges does not mean I am focusing on the negative. It also does not mean I am underestimating my son and what he is and will continue to be capable of achieving. He is a rock star, he is amazing, he continues to wow us daily, and we are truly proud of who he is. But being proud of who my son is also requires me, as his mom, to recognize when he needs a break, when we are pushing the limits, when we are setting both him and ourselves up for failure and distress.
I cannot make the world easy and perfect for my child; he needs to exist in the real world and deal with frustrations and difficulties as we all do, but I can be aware and respectful of what we can do to help him be his best self and to allow him to progress at his own pace. Not acknowledging these needs of my child, in my mind, is no different than expecting a 1-year-old to go without naps all day long because of family events or schedules; it is simply not realistic, usually results in tantrums and a lot of crying, and benefits no one.
So here is where we are today. Maybe we can say yes to one event, but no to another, because we recognize we need a break in between. Perhaps we can do one party, but not both. Maybe we let our child eat dinner alone with an iPad, because making sure he actually eats is more important to us than whether or not he is sitting with the rest of the family. Most likely my son won’t be dressed up for the holidays, because he is so sensitive to most clothing materials, shoes and fabrics that we gave up that fight a long time ago. It is evident to me my son has no need to apologize for who he is and what he needs, and that the pressure of being the type of parent I think is expected — or not wanting to let anyone down by saying no to an invitation, or having to leave early — is what can create the stress in our lives. It’s just I want so badly for those around us to truly understand.
My deepest wish would be that we did not feel the need to explain away what we need as individuals in order to be our best selves. That acceptance, and not just awareness, was truly prevalent. In my eyes, we are all doing the best we can, and I think that is pretty darn great.
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