As the year, 2017 ends, I put together my assorted thoughts, observations, and experiences in this year, as a special needs parent of Peu, who has CDKL5, a rare genetic disorder. You will definitely relate to the topics and may want to share your opinion on them. I look forward to receive your responses.
Fun and Entertainment
We often reflect and wonder, ‘Has life been fair with us? Why do we and our child have to suffer so much when rest of the world is having all the fun and enjoyment that we too had once dreamed of? What is our fault?’
Over the years, I have realized that the above thoughts arise only in our minds, our child does not perceive life that way. A child’s outlook is limited to her interaction with her parents, her care givers, and the environment around her. She has no clarity if she is missing out anything. Therefore in her current perceived environment, there is unlimited possibility to keep her and ourselves entertained.
Identify what keeps your child physically engaged within her capacity. For Peu, we place dolls and toys in her vicinity. She rolls over to them, pulls them down and we notice a glint of smile in her eyes. And this does give us happiness and opportunities to keep her engaged and entertained.
Figure out your child’s likes and plan activities around them. For us, as a family, food is a common topic of interest and currently is the primary source of family involvement and entertainment. Peu loves to eat. We love to try out new recipes and cuisines. Peu participates right from the step of menu selection, recipe discussion, cooking, and then having the meal together. It is a family experience that is entertaining for all. She seems to know that we are discussing about a recipe. She signals by smacking her lips and making light noises letting us know that she too is game for it. While cooking, she refuses to be anywhere else but in the kitchen, patiently watching us and even willing to taste. if she feels we are taking too long to put together our meal, she raises her feet and makes a loud noise informing us about her dissatisfaction. At the dinner table, she enjoys the meal with us. This activity has become a daily routine in our life. She enjoys the whole experience and looks forward to the next food session.
Experiments with Food
In one of my previous posts, I described my findings on how we seemed to have found a way to control her seizures. This year we did some experiments with food on Peu and the discoveries henceforth.
Her seizure episodes increase if she has any form of infection or if she is exposed to loud voice or noise. Avoiding the above two triggers meant no clinical seizures. During her seizure free days, I introduced a few food items that I restricted earlier. I experimented with rice, wheat, pulses (lentils), night shade vegetables, and yogurt. I did not see any increase in seizures. Thus Peu gets to eat normally as other kids. This is a big progressive step and relief for us. However, when her seizure episodes occur due to an infection or exposure to loud voices, I completely stop these food items as they are known to cause excitement in the nervous system. When she bounces back to the seizure ( those that are visible or clinical) free state, I gradually restart those food items. I continue to give her the supplements and am very particular about her Calcium supplement.
We often complain, ‘why do others stare at our children? Have we committed a crime to deserve their strange looks and why do they embarrass or irritate us with their silly questions?’
Aren’t we being too harsh? If we get into their shoes, we realize that their reaction is nothing but curiosity combined with empathy or sympathy to the least. They might be trying to relate our child’s condition with a special needs child in their extended family or friend circle. It does sound fair enough isn’t? How do we handle such a situation, neither being embarrassed nor being rude?
This is how I deal with it. The moment I see a curious person approaching us, I display a broad smile on my face. Immediately there is a 360 degree change in their reaction. As a natural tendency, they smile back and all queries in their mind takes a back seat. Once the pleasantries are exchanged, both sides share more information willingly and the acquaintance may lead to other good consequences.
Life after Us
After we are gone, what will happen to our child? This question haunts every special need parent. This question leads to lot of stress, disturbing your current life enormously.
I refuse to get boggled by this question. It may seem impractical, but in my mind I firmly believe that either I will outlive her or we will leave the Earth together. I will always be there to take care of her in the most loving way that I have been doing so far. I do not want to get stressed with the future that is not in my hands and I feel something will surely come up if the situation requires. The biggest advantage of such a thought process is that I consciously take care of my health be it physical, mental or emotional as i need to be fit enough to be able to live up to my expectations as a caregiver for long. This has been wonderful and beneficial for Peu and for me.
An alternative approach to this issue is to set up a support system for your child that would take care of her even when you are gone. There is no guarantee though and this exercise may need you to acquire in-depth legal know-how. Keeping life simple, I stick to the first approach.
Thoughts and Worry
Special needs parents are constantly lost in thoughts about doctor’s appointments, medicine schedule, medicine refill schedule, therapy appointments, food allergies, immune system, side effects of medicines, special need equipment, seizure log, progress, prognosis, and more, besides the constant fear of having to rush to emergency any time of the day. Despite these kind of thoughts, we tend to find joy as we learn to become compassionate caregivers for our children. Let us not forget that normal parents are in the same state but their topics are slightly different, homework, after school classes, food & nutrition, sports practices, play dates, dentist appointments, project work, and parent teachers’ meeting, and device addiction to name a few.
I wish to conclude that life is fair for all. It is in our hands how we live it.
Here’s wishing all of you a wonderful new year and may the year 2018 be a joyous and fruitful one for you, your family, and friends.