Every parent wants the best for their child. You want them happy, healthy, fulfilled in all they do, to explore their talents and excel. But when you are faced with the diagnosis of “special needs“ or “disability” in your child, everything in your world pauses. Questions arise and they all seem unanswerable.
My son is now 19 years old, and such an incredible joy. He has progressed far beyond any of the doctors expectations and his demeanor is so loving and kind. When my child was only 1 year old, the doctors told me that my son will never do what the average child will do. They didn’t give us much hope. And they didn’t give us much to go on, everything was “we will see as he grows”. But looking at my son today, he is a walking miracle!
In the beginning, I felt as if I had failed. I was doing this parenting thing all wrong. I was scared and I wondered how I was going to live through this. I questioned everything I was doing with my son; I was insecure and I felt as though I was blind. It was a dark place to be in, that’s for certain, at that time. But there was a moment, in the midst of it all, when something just snapped in me, an awakening. Suddenly I have a gigantic job to do and I was certainly going to do my best, no matter what! My thoughts went from fear and uncertainty to gaining control of myself, my emotions and how things were being handled around me. I honestly believed that I needed every test, every therapy and every angle of my son’s well being to be investigated. I felt the more I know about my son, the better I can do at raising him to be the best he can be, and I did just that!
My days consisted of therapy appointments, specialist appointments, tests, in home therapy, all on top of the normal everyday stuff that a parent does. My entire way of living changed, to benefit my son, to help him grow and learn. My house was turned upside down, everything labeled and colour coordinated( pictures of objects posted on my walls with bright colours and labels). My son used special eating utensils, pencils and toys. My schedule and everyday routine changed… My entire home, my entire life was my son.
I noticed my friends and work peers were getting frustrated with me. Always having to choose being with my son over going out for coffee or having lunch, enjoying an evening out with the girls. I always had to say no. I wanted to go and enjoy those wonderful aspects of life, but I couldn’t. First of all, most of the time my friends would meet, it was during one of my sons therapy sessions. At one point my friends asked why someone else couldn’t take my son to his therapy sessions to go out for lunch with them. The reason was – who? Who would take my son, first of all, when there are very few people capable of caring for my son. And secondly, I need to be there to learn the therapy so that I may work on it at home with my son for the week until the next session. My son needed me.
Now, my son an adult special needs individual, I am still his caregiver. He still needs me to help him live his life, it’s the nature of his disability. I am a single parent. And after all these years, I have looked back only to realize that I was all alone in this journey with my son. See, back then, when he was so young, I didn’t think ahead to possibly envision what my life would be like in the future when my son is older. I didn’t know back then that I would be so isolated away from average society. Even other special needs parents are hard to come by for support and companionship. We are all so focused on caring for our children with special needs that we have lost touch with outside life. And it’s so incredibly lonely.
I want you to understand that as you love your child, so do I love my child. As you want the very best for your child, so do I for mine. And so in that, you do everything you can possibly do to give your child an amazing start at their life, and so do I. The only difference in this, is that you go about achieving this in a completely different way than I have had to.
For instance, my son literally had to be taught how to chew and manipulate his food in his mouth. He did not just instinctively know. I would put the spoon in his mouth and he would just sit there with his mouth open staring off into space. The food would then drool out of his mouth. So with every spoonful, I had to massage his mouth to stimulate movement and help him manipulate his food. He eventually learned how to chew his food, but it took time and patience.
Life progressed much slower for my son than the average child. He didn’t sit up on his own until well after his first birthday. He didn’t take his first independent steps until almost three weeks after his 2nd birthday. He was 7 years old when he was completely potty trained. Achieving these milestones occurred much later for my son, but also the celebrations for reaching these goals were far bigger and emotional for my family than perhaps it was for yours. I began appreciating the simple things in life, things most of us take for granted.
I want you to understand how exhausting being a parent of a special needs child is. So many angles to this because I am tired from not just getting up in the night multiple times, but from worry, from the continual programming and therapy he needs, from running in circles around him keeping him safe, from redirecting his behaviour, from fending off people for their ignorance about my son and also pile on the other everyday stuff life throws at you. I’m tired because I don’t often get an hour in the evening to wind down from a busy day, I am still working with my son until I go to bed and even beyond.
Ignorance – Let’s talk more about that, ignorance of people about my son. I want you to understand that my son is different. He behaves differently, he socializes differently, he acts and talks differently. But please try to remember that differently isn’t always a negative thing. My son has taught me more about life, people and love than I ever could have imagined. His ongoing innocence and pure genuine heart has opened my eyes to a fresh world of acceptance and being grounded. My son just IS. He doesn’t put on an artificial facade. He isn’t reserved in his generosity. He is the sweetest, most giving and compassionate person that I know! He just IS. It’s my favourite quality about him. His intentions aren’t to hurt you, embarrass you, or harass you. He likes you, he likes all people. He is accepting of you, interested in you and just simply wants your acceptance in return.
I want you to understand how lonely I am as a parent of a special needs child. I have a daughter as well, she is 5 years younger than her brother. Yes, I waited a long time to decide on having another child, my son was a very sick and demanding infant/toddler. At first I wasn’t even sure I wanted another child, with all the demands of my first, but as many other moms out there, the maternal bell was ringing in my heart. And honestly, the age gap was just right! It did wonders for my son being that much older than his sister, and his connection to her was incredible!
Now that both my children are in their teenage years, many people do not understand that I cannot just leave my children home alone with each other and go out and enjoy personal time for myself. First of all, the demands of my son are too great for my daughter and there are only 2 other people on the planet who are educated enough about my sons disability to care for him if I wish to go out sometime. Those 2 people live more than 3 hours away from me. Grandmama and Papa. Their availability is very limited. So, I am with my son almost ALL THE TIME! I cannot just go out for an evening of fun. Don’t get me wrong, I would love to and I appreciate the odd invitation, however, it would be nice if you could join me in my world for companionship sometime. Bring me a lunch basket, sit with me in my home while I tend to my son and visit with me. Something so simple, no one offers.
If you think that perhaps I have friends who share the same experiences as me with raising a special needs child, please think again. Many of us have a hard time leaving the house with our children to go visiting each other. The demands we have individually caring for our child, there is very little visiting and support between us.
I would like you to understand that I do not have many things to talk about other than my children. Since they are my whole world, they will be the topic of conversation. I do not have a bunch of worldly experiences to pull from for an intellectual conversation. My children are my life experiences. That may sound boring to you, but to me, being able to talk about them, my pride and joy, as well as venting about my difficulties can sometimes ease my load a little. Knowing someone is willing to listen, can make me feel cared for, something so simple can do so much good.
I would like you to understand that I do not have all the money in the world to have a wardrobe, hairdo and makeup. I often look worn out and disheveled because, well, I am busy tending to my son, not myself. Funds are limited and so I do not worry about what my fashion statement is. I am wearing clothing that is comfortable and covers all the appropriate parts of my body and its about all I am concerned with. My socks are darned, my clothes are stained and my shoes are working their best for me about a year after they have had their day! I don’t have the energy or ambition to try and impress anyone. My money is better spent on my children and plainly, survival.
I want you to understand that I am not bitter or angry at the world. I am isolated, I am wound a little bit tight from all the responsibilities I have without much opportunity for a break. I am also trying to keep a distance so as not to bother you, knowing that my son can be a little bit trying at times. I am being respectful of you and your lifestyle. I try not impose upon you, however, I may talk a great deal in your presence for the simple fact that I do not often have the opportunity to talk to people. And if you extend a hand of kindness, just know that doesn’t happen very often so I may cling to you for a while. Sometimes I may overstay my welcome. And it has been so long since I have participated in “normal” socializing, I have become quite awkward about it. But interaction instigated by another person presents me with moment of humanity. I long for someone to truly befriend me, without judgement and not just for a moment, I mean befriend me long term, thru the thick and the thin.
Lastly, I want you to understand that every day, seeing my son struggle with all his issues, his anxiety and stressors, his feelings of inadequacy and loneliness pains me beyond words. I long for my child to be accepted. I long for him to go out into the world and be free from the disability that restrains him from being accepted in this world. But at the same time, I wouldn’t want my son any other way. He is unique and possesses incredible qualities that most of us just don’t have. And it is heartbreaking to see and know of other people being cruel to my son, teasing him and shunning him. As every parent wants for their child to be accepted and loved by his peers and society, as I do the same for mine.
Please know this, that I am NOT complaining about my situation. I very much feel blessed to have been chosen by God to raise this very special child, to be touched by his amazing nature! There is more to learn, appreciate and experience in life with a child who has special needs than you could ever imagine. I couldn’t be more proud of the man my son is becoming, and how unhinged he is regardless of the cruelty he has endured in this world.
So if you see a parent or guardian tending to their special needs child, don’t pity them, don’t stare at them. Give them a warm smile, offer to help, and befriend them. It could make a world of difference.