If you have a friend or family member with a disability, or they have a child with disability, you may have noticed their absence at many of your planned events or parties. Hopefully, you understand their absence isn’t because of you personally or the company you keep. It’s sometimes difficult for individuals or parents of children with disabilities to attend most gatherings, because most social settings are not always disability friendly. However, you can create an inclusive gathering that can be a fun experience for all.
From the moment your child is born, you learn instantly that your life is no longer your own. You live to nurture, teach, and protect your child. Every day from then on is based on your insuring their being healthy, safe, and happy. Your life is filled with love, hope and worry. For parents of children with disabilities, our hopes and worries are amplified by a thousand times, as we are never truly at peace in the absence of our children. Every day is faced with different challenges across all settings, all people, and varying circumstances. Every day, our strength, patience, and other virtues are tested in different ways. I share with you my everyday prayer:
Siblings share a bond unlike any other. No other relationship will ever have the same dynamics of shared family ties, commitment, and history. Siblings of individuals with disabilities have twice as many stronger ties to one another as they do challenges. I have had the privilege of watching the strong ties of love blossom between the love of a blood and step-sibling.
As a parent of a child with a disability, I know that “me” time is a thing vaguely remembered, and that a few hours of peace and quiet to do as we please, is a thing fantasized. However, we must resist leaving our children alone with service providers during therapy or other paid service sessions. Therapeutic or other paid service sessions such as behavioral, speech, occupational, physical therapy, or private tutoring and instructional sessions, are not meant to be treated as respite care.
If the expectation is that our children increase language skills, or make any kind of physical and academic learning gains, we need to make sure that we’re present. There are so many reasons why we need to be there, and only one for why any of us might feel it’s unnecessary. We should be learning the strategies implemented by these therapists or service providers so that we can practice them with our children to help reinforce learned skills. It may be tempting to take advantage of the time our children spends with another adult, but we all know how precious these limited services can be. Many of us who have experienced budget cuts in services are well aware of the fact that with our countries current economic struggles, we can lose these services any day. It's for this reason that during therapeutic sessions, we should be observing, asking questions, taking notes, and it's important for us to learn the strategies and techniques that are used. Most importantly, it’s safer that we monitor how our children are being taught and treated.
I can recall a time when my son was three years old and placed in a before and after school program. I had arrived a few minutes earlier than my usual pick-up time, only to find my little boy in the middle of the gymnasium (surrounded by kids of all ages), with his pants down while this “caregiver” thoughtlessly changed his diaper. My son was crying and I was livid. I calmly grabbed my son, pulled his pants up and took him to the nearby bathroom to finish changing him. I did address the issue with both the manager and the caregiver. She was a young girl who was clueless about my son’s dignity, she didn't think he knew to feel embarrassed. This was suppose to be a “trained” professional. Believe me when I write that it was the last day he attended that program. We cannot trust in the fact that all agency supervisors know to train their staff about sensitivity and disability awareness any more than we can trust in the people who actually do receive this training and still don’t care. I have always placed great value in all children and people. There is no way to measure the validity of a person’s humanity by their degree, work title, or their claim that it is so. You can only validate a person’s humanity by getting to know them over time. I've always believed that a person’s true nature is revealed when they don’t know anyone is watching. I have had the privilege of working with some amazing teachers, therapists, school administrators, and service providers. I know that there are many wonderful and trustworthy service providers out there, I have worked with many. Still, when it comes to paid services or providers that come to our home, we are the only true protectors of our children, trust isn't something that can come too easily. We must think about how well we know someone before we leave our precious loved ones alone with them. Our children and loved ones quality of life depends on it.
On a different note, if a service provider ever suggests that they need to be left alone with your child, because they state that it’s routine or protocol that they work with your child alone- this is a red flag. Any good therapist/service provider welcomes parental involvement and encourages parents to learn. In fact, all of the service providers I've ever worked with, have preferred that I remain in the room. And if they did prefer that I left them alone, too bad, I’m staying. If it breaches their contractual ability to work with my son and I, then I’ll gladly show them the door. Even if it was stated that my presence made things difficult for my child (which to be fair, is possible in some situations), still, I feel the goal should be to incorporate parents in these sessions. None the less, if this were the case, I would be within ear-shot, and an action plan to work towards including me in future sessions would be expected. I read an article about a trusting parent who left her very young son (with little ability to communicate) alone with a speech therapist repeatedly at his request. After sensing something was wrong, the parent hid a camera in the room and learned that her child was being physically abused by the therapist. The twenty-seven year old therapist hit, kicked, head butt, and threw the little boy with severe autism across the room. I’ve attached the link below, but I warn you it is disturbing to watch. Please note that I cannot stress enough that there are fabulous service providers out there doing fantastic things for the children they serve. This blog is being written to promote parent involvement and safety awareness.
Every parent, especially those of children with disabilities, needs time to rest and relax both the body and the brain. It is a must and if you don’t already take time to do this regularly, please really try to start doing this (I know it's easier written than done). Just be sure it’s not by entrusting your child to a paid service provider that you don’t know very well. That favor should come from someone you know well and trust. There are many parents out there that don’t have the luxury of having family members willing to help out by caring for their child. In those cases, I would try to either take a paid time off (PTO) or sick day from work once a month, or at least every other month. If your child is at school, you have at least six to eight hours of much needed alone time to do as you please. And try not to feel guilty about your work load. Any boss worth his or her salt would rather you take care of yourself physically and mentally so they can count on you to do your best all year round. More importantly, your children need to be able to count on you.
© 2015 Sensory Friends
Author: Christine Goulbourne