A love beyond words: What I learnt fostering a boy with disabilities
W.G. (name protected), 67, was born and raised in Queensland. A recently retired high school French teacher, she enjoys travelling, reading, writing, gardening and keeping fit. She is married with three adult children and is a guardian to a disabled foster son.
"You will have to go! You are driving me crazy! I can't do this anymore!"
"If you do this one more time, you can pack your bags, walk out the front door, and never come back!"
I could hear my shrill tones, I was screeching like a mad woman! Irrational, yes! Impossible, even more so!
"Mum, you can't mean it! You wouldn't send one of us away, would you?!"
How to respond? Trapped! Guilty of being the wickedest mother ever!
Jonathan* had been with us for three months, a nine-year-old boy, the much-wanted brother for our third child, our only son, seven years old.
"Why have I not got anyone to share a room with? You and Dad share a room, the girls share a room, but I have no-one!" A child's perspective on justice!
And so began our remarkable journey in fostering a severely disabled boy, a child who could move only one arm a little, who had severe intellectual impairment, was technically blind, who had no verbal language, and numerous other medical issues. But far worse, one who did not sleep, who laughed like a maniac throughout the night. A child who waited till I had just fallen asleep before starting up again. I was going crazy from sleep deprivation!
I knew his behaviour must stem from frustration. So I made two resolutions. This child would learn to sleep at night, and not nap through the day. And we would develop a form of communication.
So throughout every day we would nudge him awake every time he nodded off. And I realised it is very hard to laugh loud and long at night if you are lying on your tummy! So we moved him into the lounge for night sleeping, and I began my training. I would place him on his tummy to go to sleep, and then later turn him onto his side, which was more comfortable for him. Eight times a night, every night.
Gradually it went to seven, then six… and finally I only needed to say, "If you do this again I will turn you onto your tummy!" It worked. As he slept better at night he was more alert and responsive to his daytime environment and experiences … and he was therefore more tired at night and ready to sleep. A year later he was an excellent sleeper. Every night I would get up twice to turn him, without him waking.
I learned that one does not die from exhaustion.
The second resolution was also progressing. I knew he did not like oranges. So each afternoon, I would help him to hold and feel an orange. I would peel it, help him to smell it, place a small portion on his tongue for a second, then gently hold his head and help him to shake it, saying "No, Mummy".
Only six weeks, and I could ask him the question and be answered by a slow gentle shake of the head for a 'No' response. This was developed for other questions. Saying yes was harder, but his beautiful smile was sufficient for a yes. We could then ask questions about food, activities, and people and places.
I learned that 'Twenty Questions' is wonderful for essential communication.
With limited use of his left hand he learned to reach and touch his bowl if he wanted more of his favourite foods. That hand became quite quick, sometimes even anticipating the question!
I was no longer the crazy mother, but one who sought to bring out the best in this dear child, so he could participate in a life as happy and varied as possible. His new supportive wheelchair improved his posture and comfort. He loved speed, so my son would race him around the house in his wheelchair. Outings gave him much joy, so we took him on long drives, and walks in his wheelchair, so he could enjoy nature and its sounds and scents. He attended a Christmas party at Government House. A flight in a jumbo jet was organised.
He appreciated music of all kinds and had an incredible memory for pieces he knew. Our other three learned piano and he loved to sit with them while they practised, uttering a soft groan if they played a wrong note, crying if he did not like the piece, jigging with pleasure if he did. He entered into the heart and soul of classical composers. If the piece used minor keys or expressed sadness, a tear would roll down his cheek. He would listen to all with rapt attention, a beautiful sight to watch him experiencing every emotion the composer had expressed.
We took him to the roller skating rink, and our children would gain confidence on their skates by pushing him in his wheelchair, as their stabiliser. Soon other children also wanted a turn pushing Jonathan. It was lovely for him to be needed and respected for his role as 'support person'. The manager asked Jonathan if he would like a turn in the big rink. So out they went, Jon in his wheelchair, being raced around the rink by a speed skater. Hair blowing back, laughing with pleasure, round and round he went, excited beyond measure! His life became richer and fuller for his new experiences.
Jonathan's journey was often painful physically, but also emotionally – he knew he was different, and sometimes not respected or valued by others. So we showed others how to treat him as a normal person, with feelings. We grew to love him dearly, as one of the family.
I learned that Jonathan was the teacher: he taught each of us lessons in patience and endurance, lessons about unconditional love, about compassion, inclusion, that each person has value because they are a human being. He taught us the importance of respecting all people and not judging by outward appearances.
Jonathan will finish his life without ever speaking a single word. I will never hear him say "I love you too" when I tell him I love him.
And I learned, without a doubt, that there is love beyond words.
*Not his real name