When we think of parenting, we think of all the things that change, all the things you sacrifice, and all the things you have to consider. From your changing sleep patterns, your child’s first words and steps, till they go off into the wild on their own.
But what happens when you are a parent of a child with a disability? How does that alter the way you planned your future and your life?
Menucha Cooper is a passionate mother who is advocating for the life and future of her child, Mendy, who was diagnosed with Angelman Syndrome at seven months.
Angelman Syndrome is a rare genetic condition that impacts intellectual and physical ability, affecting are around 1 in 20,000 people.
Within the first seven months, Menucha and her husband, Reuvi, did not notice any major signs that indicated there was anything different with Mendy.
As their fourth child, they thought he was an easy-going baby who rarely cried or fussed and liked to sleep. Unbeknownst to them at the time, these were early signs of something else.
Reuvi (far left), Menchua (far right) and their five children. Photo: Supplied.
It was on a trip to Israel when alarm bells started to go off. Mendy’s behaviour was wildly differed from their nephew who was only a few weeks older.
“I remember getting off the plane from Israel and I called the paediatricians office because I knew there was something. I remember thinking, oh my gosh, my life could just change.”
Her experience with Mendy’s first paediatrician is one she hopes no other parent with a child of disability has to experience.
The doctor did not take the time to research the condition or think about Mendy’s long term care after diagnosing him with Angelman based off blood tests.
There was no proper explanation for the syndrome because the doctor himself did not have the expertise or knowledge, and only offered the advice of “don’t go home and Google it.”
“I will never forget, I walked into the lift, I was with my husband. My husband, Mendy and I just burst into tears because it was like this unknown.”
This initial encounter with medical professionals propelled Menucha into speaking up for her child and advocating for better practices.
“What I would suggest to any doctors if you’re telling a parent a diagnosis, you need to have had an appointment ready with someone there that they can talk to that could explain.”
A study conducted in the United States indicated that the likelihood of parents with children who have a lifelong illness to experience post-traumatic-stress-disorder (PTSD) quadruples*.
Fortunately, Mendy’s new paediatrician is a breath of fresh air for Menucha, “He says you need to guide me and tell me what you want from me. I’ll do whatever research you want.”
While Mendy is 10 years old, he is non-verbal and that gives Menucha even more reason to give him a voice, “I am not afraid to speak up for my child. If I don’t speak up, nobody will.”
The importance of parenting while having a child with a disability is acknowledging the other members of the family.
“What is really important with doctors and therapists and people, it’s not just about the child that you’re dealing with, it’s the family. We are a family unit.”
With four other children, she never wants any of them to feel neglected or abandoned by the demands of having a sibling with a disability in the family.
Her children also bear witness to Mendy’s seizures, his bad days, and situations when he is rushed to hospital.
According to a 2019 survey from the Australian Institute of Family Studies, “4% of adult siblings reported family stress was an issue during their childhood”** with more than half of the participants indicating developing anxiety and depression as a result.
To ensure she is doing the most she can for her other children, Menucha dedicates one-on-one time with each of her children at different moments of the day.
“It’s something that is on my mind constantly and something that I’m very conscious about. I never want my children in 20 years to say that my mother didn’t give us me enough time because she was busy looking after Mendy.”
Parental self-care is also incredibly important for Menucha to ensure she is giving her body and soul the rest it needs to keep on going.
“I definitely know that when I’m in a good place and I’m looking after myself and my husband and I have a good relationship, all the stars align.”
Acknowledging that things are sometimes incredibly challenging, there is a struggle and knowing that you are not alone with those feelings helps her get through those harder days.
“If you don’t look after yourself, you’re no help to anyone.”
Loneliness can be one of the hardest side effects of being a parent with a child who has a lifelong illness with recent reports indicating 51.4% of parents feeling ‘social isolation’ .***
There is no surprise that having a strong support system is key for the betterment of everyone’s mental health, but that notion hones particularly true for parents with a child of disability.
Communities fostered at places like our NeuroMoves facility and the NAPA Centre Melbourne have given Menucha, Mendy, and her family immense support, understanding and offer a safe space.
“When you go to a therapy place that actually looks at not just as Mendy as a child, who doesn’t know how to walk or the child that can’t do this but treats him as a person and as he’s part of something, it makes such a difference.”
Almost immediately after finding out about Mendy’s Angelman diagnosis, Menucha jumped onto Facebook and found a support group with other mums.
“The connection that you have with fellow mums who are going through similar things is something that you can’t even describe because they just get you.”
Human beings need communal support to survive and thrive, and when going through an unknown, having a sense of belonging is crucial for maintaining one’s emotional well-being.
Additionally, society’s changing attitudes towards those with a disability or who do not fit social norms helps transition into the world of disability for families.
With inclusivity and acceptance being normalised, Menucha believes “there is no excuse to say I don’t know.”
Menucha and her family have a strong Jewish faith and their relationship with God has also allowed her to heal with the reality of Mendy’s disability.
“I’m genuinely a very open person and I have a big mouth and a strong personality. But now I know why, God gave it to me because I needed it for my son.”
She feels lucky and grateful to have her faith which helps her everyday in feeling like she has a purpose in life, which is to help Mendy.
But when it comes to Mendy’s future, Menucha and her husband feel too overwhelmed to think too deeply about it.
“We don’t want to go there. I think because it’s too hard.”
During a recent live stream on Instagram, one of the other mum’s commented on her desire for her child to pass away before her and that sentiment hit home for Menucha because “no one is going to look after your child like a parent.”
She also does not want her other children to have that responsibility.
For new parents of children with disabilities Menucha has a few words of advice that has helped her get through the last ten years.
“Get help, because you can’t do it all yourself. It’s just impossible. Absolutely impossible. Take it day by day because you know what? You’re not going to fix everything.”
She believes it is very important for parents to recognise that their children will not “grow out of it” and that they are people first and their disabilities do not define them.
Menucha further emphasised the importance in allowing yourself to feel all the emotions that come with your circumstance and going through various stages is completely normal.
While talking with Menucha, it is no surprise that parenthood is a journey filled challenges and triumphs, particularly for parents of children with disabilities. However, amidst those hurdles, emerges personal growth and a love that truly is unconditional.
Written by Sathsara Radaliyagoda.
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