Anita’s Story – Because its Better…
Grief tapped me on the shoulder this morning, the memory of pain filled words spoken by my son many years earlier, bringing tears to my eyes. In 2012, my adult son Warren was hospitalised for depression and anxiety. As I sat beside his hospital bed, he shared the words that pierced my heart, ‘no one wants me’ he said. Is there anything more distressing than seeing your child’s pain and loneliness but being unable to ‘fix’ it?
Warren is our second son and was born in December 1974. The day we brought him home from the hospital, I remember looking at him lying on his stomach and holding his head up high. My husband and I were amazed at his strength; he was only a few days old. Warren was born with crossed eyes (strabismus), a condition that meant his eyes were not properly aligned with each other. We followed the doctor’s advice and he wore a patch over one eye. Over the next year, we noticed a number of other things that suggested that there was something more going on with Warren’s health but our doctor reassured us that he was just ‘slow to develop’.
By the time he had turned two years old, Warren was diagnosed with mild Cerebral Palsy. Cerebral Palsy (CP) is the result of damage to the developing brain either during pregnancy or shortly after birth and can affect a child in different ways, including physical and intellectual impairments. Although cerebral palsy is a permanent, life-long condition, some of these signs of cerebral palsy can improve or worsen over time. We were blindsided by this news. To say we were upset and confused is putting it mildly.
Initially, we believed that Warren had only a mild physical impairment. He had extra tone in the muscles of his left side (leg), which caused him to walk toes first then heels and he had some difficulty with fine motor skills. An exercise regime was put in place to assist him with his coordination and motor development. Sensory stimulation was also used to promote cognitive development by increased brain function, increased concentration and focused attention. Special boots were made for Warren to assist him with his walking and, by the time he was almost three, he was walking. I considered any extra time spent in helping Warren in those days was just doing what any parent would do to meet the needs of their child. I certainly didn’t consider him to be disabled.
In later years, I chose to focus on his gifts and abilities,
not on the label that society, services and systems gave him.
When both our sons were born, I don’t believe I was thinking of their future, just that we had been given a beautiful gift—children that we would love, protect, encourage, and support. Our determination to give Warren opportunities to develop, to be the best he could be, was the same commitment we had for his older brother, Matthew. Faith in God, that He would be with us in the journey and never leave us, gave me a peace to accept this new reality. However, we had no idea the degree we would need to advocate for him and the challenges we would face. Fortunately, God only gives us one day at a time!
Warren attended the same pre-school as his brother, only interrupted by visits to speech, occupational and physiotherapy appointments. However, halfway through the year the teacher recommended to her superiors that, whilst it was very important for his continued improvement to continue at pre-school, it was essential he be able to join another specialised, pre-school.
This was the first of many times that a professional would indicate
Warren could not be on the same natural pathway
as other children, for his schooling, or indeed his life.
The following year, he commenced his education at a ‘Special School’. There were some wonderful teachers, one who said: ‘I thought I was the teacher, but Warren and his classmates taught me about what people with disabilities want their future to look like’. They wanted the same as everyone else in community—an ordinary life.
When Warren was 18, he was offered a place at a Day Learning Centre. We accepted this ‘placement’ because it was the only choice we were given and we did not know of any other alternatives. Warren was reasonably happy, as he usually made friends and was well liked. However, over the years of Warren’s experience in four different day centres it seemed that there was an inability to provide unique and challenging pathways for their ‘clients’ due to the group mentality and funding restrictions, and a mindset that keeping them ‘occupied’ would give them a good life. At one point, I asked if Warren could move from the Day Centre to their Supported Employment section but was told he was ‘not good enough’. For many years it was a frustrating journey, as I tried to push the boundaries with the services system for Warren to grow and learn.
During Warren’s late twenties I was working to set up a ‘home’ for Warren through a grassroots organisation; perhaps it would be with some friends. This did not eventuate before I became aware of a vacancy in a ‘group home’ set up by other parents in a suburb away from the family home. Warren very bravely accepted our decision for him to move out and for three years, with his courage and sense of humour, he made the best of it. On the first Sunday after moving out, he came home to us to attend church; his comment to me was ‘Aren’t I ever coming home again?’ It tore at my heart.
He became physically sick with anxiety in the third year, not able to articulate how he felt but was certainly showing us. We believed we had been doing our best for him, trying to increase his independence, but it wasn’t where he wanted to live. We asked him if wanted to stay in his current home, return to live in the flat on the lower level of our home, or live in a unit of his own. He wanted to come home—to his community—and on asking him why, he said, ‘because it’s better.’
Then the light bulb moment. I was introduced to some amazing parents both internationally and nationally who were helping parents and workers in the disability field to rethink what it means for people with a disability to have a good life; to have choice, to be able to have a life that has meaning and makes sense to them. I was reminded that families have a natural authority when it comes to their children. Having confronted professionals and bureaucrats in the past who told us what Warren could, and could not, have, I was empowered to grasp the truths I already knew in my heart and move forward with this thought, ‘Warren’s main role in life will not be that of a client.’
It is not enough for anyone to just ‘be occupied’.
Living without purpose is not good enough.
I was introduced to parents in a family-governed initiative ‘Living Distinctive Lives’, who were crafting an ordinary yet unique life for their family member with a disability. For the last thirteen years I have journeyed with these amazing, inspirational parents—sharing, growing, learning, crying together and celebrating our children. When you want to challenge the status quo, travelling the road with like-minded people is empowering. There is a oneness in the sharing of joys and sorrows, achievements and failures, reflections and celebrations, faith and doubt, trust, dependence and independence, probabilities and possibilities. It gives us the opportunity to grow into the people we were created to be—a people who identify with those who are different to us, are tolerant because we become aware of our own limitations in endeavouring to love without limits.
We had to rethink and reimagine everything, which led to creating a vision for Warren to get a good life, and build a circle of support of family, friends and allies who would help identify pathways to the best possible community lifestyle with Warren.
Which takes me back to that heartbreaking hospital stay in 2012. As I reflect on Warren’s battle with depression, I am saddened that my precious son felt such despair at his lack of connection and meaningful community. Although Warren lives with challenges that many others do not, he still dreams of having a romantic partner and a family. He still longs for meaningful friendships and a life of purpose. We are not there yet but we have made significant progress.
We are so proud of what Warren has achieved, as he has been given the opportunity to follow his interests and dreams. He continues to inspire me in the way he meets the specific challenges of his life with humour, grace and courage. Due to the challenges Warren has experienced in his life, he has an empathy and sensitivity to the pain of others, and this is so often shown in the way he expresses his care—a genuine part of his identity.
Warren has been able to follow his dream to ‘work for the police’; though he would have liked to be a policeman, he associates with the police in his role as a police volunteer at the Police Museum and the Academy.
After all, you don’t have to be Tiger Woods to play golf!
He volunteers at Café Salvos, his church café during the week and is a Soldier at Salvation Army Box Hill Corps, continuing the family tradition and firmly held values. Warren is an established artist, a prolific painter whose abstract images and radiant colours provide a motif based on an arched window. His first solo show is programmed for July 2019, which he has titled Windows. When we dream, we don’t think of why not, we think: ‘wouldn’t it be great if this could happen’. If we limit a person’s right to dream because of their disability, their life becomes a reflection of what we allow, not their choice.
One of the traps is that we determine how people can be safe,
before we look at what they require to be happy.
In 2015, Warren moved into his own home. He celebrated the move with a housewarming party and has since hosted footy final and dinner parties as well. He cannot live alone so having a housemate to provide some targeted support and companionship is ideal; it is a reciprocal life where the sharing and receiving of individual gifts happens. Warren has a support team who provide assistance with daily activities, his work and social activities.
If I have given you the impression that I am a strong person who has sailed through the challenges, I need to tell you I have struggled like everyone else and made mistakes—the difference is I have had Someone to lean on, to guide me, to forgive, to open doors just at the right time. I have suffered from post-natal depression and several bouts of clinical depression and anxiety—without my loving, gracious and merciful God I would not be writing this story of hope.
God has been with me my whole life and when I couldn’t see my way out of the darkness, I was able to believe He was there holding me, even if I didn’t feel it. He promised he would be faithful, and I believed and trusted in Him during those times when I was just holding on with my fingertips. I was often impatient for the Lord to bring me back to wellness, but He did. When He stops you, He is not through with you. There is something that lies beyond. I believe I have become more compassionate and understanding as I have come to appreciate the struggles of others, particularly as I have journeyed with parents with a family member with a disability.
I so often find it difficult not to embrace the overwhelming, maternal emotion that I alone am responsible for my son’s happiness, but God assures me that He is faithful and has Warren in His hands. The most important and comforting thought to me as his mother is that his identity is as a precious child of God, made in His image, that he holds him and will never let him go, even when I am not there to make everything right! Our son is an amazing young man who, through his deep, heartfelt cries, has been heard by a loving Father.
In our society, disabilities are often seen as things that need to be ‘fixed’ and, therefore, the person who has the disability is also viewed as broken. However, a person should not only be defined by their ability or disability; we are body, mind and spirit and we all have gifts to share with others.
“The tragedy is not that we suffer, but that we fail to grow into compassion”.
I read recently that God’s idea isn’t that we would just give and receive love, but that we could actually become love. Jesus’ words in scripture challenge me to examine my assumptions, judgements and reactions, in the light that God loves everyone unconditionally. I want to be genuinely inclusive of all people who ‘walk into my life’ and into my community. Only through God working in me can I see others as He sees them and love them with God’s love. My peace is found in His faithfulness and belief in His sovereign will in all seasons, because He is Love and his mercy and grace endure forever.
IF I HAD NOT WALKED THIS WAY
I faced a mystery not understood
When in a circumstance I could not bear;
I pleaded with the Lord I loved
In deeply anguished prayer.
I searched, when rising, for the strength to live …
I found my God when walking there.
What if I had not walked this way,
Would I have missed His loving care?
Would I have felt, at heart, another’s pain,
Or reached to find their numbing fear
Now touching, rending, mine? …
I knew that God was drawing near.
To ease the burden that I understood
Would be my sacred call to dare,
The Light of God shone on my path
Then dimmed–it faded with my tear.
Dense forests of deep sadness came …
Why? Was God now not really there?
Do others care, perceive the griefs
Of those with whom the load I share?
And, does God really lead me through
Each valley, comforting and ever near?
Is God still on this rocky road I tread?
Oh yes, He walks with me right here!
Involving all of life and those I love,
The greater challenges will still appear,
Each touching, maiming, paralysing;
Mountains rise on cliffs most sheer,
The deep crevasse, grim gorges, test;
Oh, will my Lord still meet me here?
If I’d not walked this sacred path
With God beside me and, so dear,
I would have found a deeper pain:
No peace of soul, and faith not clear.
Yet challenges will still remain
Until I see God face to Face and, THERE!
Soul: trust, hope, love, and rest:
The Lord indeed walks with me here!
Anita 2001
