Journey’s different but similar
I had seen her before. She was a neighbour, a young mum with two small children.
I watched her as she walked up the laneway beside our home. She pushed her son James in a pram, a gorgeous looking child, brown eyes and olive skin. He was 9 months old, strong, healthy and active.
My heart ached as she walked by. Greg and I had recently received news of Alex’s diagnosis – cerebral palsy with athetosis. These words spun in my head, so many unknowns. Alex was 6 months old, a happy little soul, my beautiful first son. Our world was in turmoil as we attended appointments at the Children’s Hospital and juggled the daily lives of our three daughters and their school commitments. Mandy must have not a care in the world I thought, as she disappeared from sight at the end of the lane.
A few months later when the dust had settled a little for me, I finally managed to start to speak about Alex’s cerebral palsy. When I next met Mandy I told her of our sad news. Her strength and ability to listen with care amazed me. She offered positive yet realistic wisdom about what she knew of cerebral palsy. Mandy’s attitude was one of hope and energy to find services helpful to Alex. Never give up she seemed to be saying. I walked away from that first conversation having felt the strength that comes from sharing a burden. I also soon learnt that all is never as it seems.
My next contact with Mandy was very different. She told me of concerns she had with James and that he was to be assessed in the coming weeks. Possible autism she had mentioned. And so our journey together has begun…….
Two families, 2 doors apart with two beautiful boys.
James has speech delay, a love of computers and videos. Alex is physically limited except when in his hart walker, and limited speech. Both boys enjoy visiting each other, -James to see our video shelf, and Alex to walk to James’ house in his walker. We have even joked that our 2 boys could ‘flat’ together -Alex to pay the bills, James to do all the physical work. Our boys both attended local pre schools and during the two years at school the long preparation for starting school began. I guess I never realised how much is involved in getting kids with any special needs to the front gate of school!
For James there was testing, and then the reports required by various school departments. The task of orientation was particularly important in his case as familiarising him with new changes is vital Toileting training for both mums was a whole new world, James learnt well but then was attached to one toilet. His home toilet was the only one! For Alex, you needed to see the hand signal for I need to go to the bathroom (hard if you’re out by the clothesline) and then needed lifting onto a specially supportive toilet seat. Hard to carry that around at the shops.
Both our boys have risen to the occasion well!
Alex’s school is the local primary school and the preparation has been huge. Luckily most ramps are in, and due to his second skin suit (like a boned burns suit) the school has installed air conditioning in the classroom. Our two boys have made it to kindy. James lost his drink bottle the first day which meant he didn’t want to drink from any other bottle or cup for 24hrs till the bottle was found. Alex’s aids needed to learn how to feed and hydrate him, recognise his yes and no, learn how to transfer him from wheelchair to floor to desk chair.
And so it has happened. Mandy and I share a giggle that our two little fellas have made it through the school gates. The uniqueness of our situation has meant we are both able to share resources from organisations supporting Autism, Family Advocacy, Department of Disability and Ageing, and the Cerebral Palsy Alliance.
Mandy and I have attended seminars together, shared respite carers, and resources relevant to each child, discussed the many different and daily challenges, and laughed at the different yet equally tough obstacles our boys are faced with. These are the shared laughs we mums of special needs do have!
It has also been a small support network for all our children and our partners. In private we’ve both felt reassured that we aren’t the only family on the block going down the never ending path of therapy. And so….. James is in his uniform this week, and is the first ready at school for swimming lessons. Alex is coping with his second skin suit signing to go to the bathroom, and catching a bus to school! He even can say 4 of his sight words.
We are two proud mums.
A huge thankyou for the friendships that have eased our way along this road.
Author: Penny Graham
Penny Graham lives in Sydney and is the mother of 4 young adults. Penny worked as a social worker primarily in Child and Family Health before the birth of her 4th child, Alexander or Al 20 years ago.
Since then, Penny has been active in disability advocacy in both paid and voluntary roles. Penny’s work with Resourcing Inclusive Communities at Family Advocacy involved state-wide workshops focussing on living Inclusive lives and keeping a vision for your family member. She is presently working as a Project Officer/Inclusion with Lifestart, a not for profit (NGO) Organisation supporting Children and Young People with Disabilities, their families and Carers.
Penny has significant lived experience with Al (a young man with severe physical disabilities) who attended his local primary and high school. She is passionate about positive collaboration with schools, maintaining a young person’s own vision and ensuring good inclusion for best outcomes. She is a true believer in the power of sharing stories with other families.