I had never imagined being a special needs mom, yet I am a mom to not only one but two special needs children born with Down Syndrome. Many moms like myself who go through many physical and mental health challenges, survive in the midst of societal isolation which taking a toll on their well-being. Mothers of children with special needs require much support, love and encouragement, as they struggle, and need to know that there are others too on this journey.
Expecting my first born, I had dreams like any other parent about that perfect child who will go on to change the world. I would be lying if I didn’t say that all my dreams were shattered the moment my doctor uttered those words describing the intellectual and developmental disability of my son. He was born perfect, just the way God had meant it, to be but the way doctors presented it meant that, with Down Syndrome, he might not be able to talk or walk like typical kids, or he may never go to college, or work, or become independent. Little did I know then that, few years down the road, he would be achieving his academic goals in addition to his inspiring personality spreading kindness and empathy.
We talk about post-partum depression in mothers, but mothers with special needs children can also suffer severe depression accompanied with post-traumatic stress disorder. Their experiences are nothing short of traumatic. Continuous feelings of isolation and the guilt of feeling responsible for a child’s condition can be devastating for one’s self-esteem and confidence.
A special needs mom describes her life-altering journey caring for her two children with Down Syndrome
My son stayed in the NICU (Neo-natal Intensive Care Unit) for weeks before we could bring him home. Not being able to bring a baby home and sleeping next to an empty crib for weeks can be mentally exhausting. Going through the same experiences with the second baby is something no one is prepared for.
Expecting our daughter, I had hoped for a better experience as doctors had cleared us with all the genetic tests and no one we knew had two children with Down Syndrome. But it happened again! Once again it felt like someone had taken all my dreams away from me. My daughter was rushed to the NICU right after birth and I wasn’t even able to hold her for the next two days. This time it was much harder, especially because we already had a special needs child at home who, being almost two years old, couldn’t walk or crawl, hence he was fully dependent on us as well.
Everyone goes through a grieving period when things do not turn out the way you plan them. Going through traumatic births twice made my grief much stronger. The second time around, it felt as if the stares got stronger and the whispers got louder from the people around us. In circumstances such as this, societal isolation is the easiest option for relief. Everyone could see that my children had a disability — their specific look gave it away.
Like any mother, I didn’t want people to know them as disabled. Everyone would ask about the kids, but no one asked about me or my well-being. No one said they will pray for my strength and patience, instead they would comfort me by assuring me they would remember my kids in their prayers.
Many different challenges have come throughout our special needs parenting journey. Sadly, our society sidelines individuals with disabilities and their families. The constant fight for their acceptance is a long hard battle.
As special needs moms, we feel that people stigmatise disability and, instead of opening up their hearts with empathy, they brush it off as something that doesn’t affect their lives. We feel that the desire of parents for their kids to excel academically leaves little room for kids who are slow-learners. We aren’t given the luxury to discuss our struggles and there is a constant expectation of staying strong. Often times we just need a listening ear with whom we can share our struggles.
Changing people’s perceptions about disabilities is the toughest battle. As a group, we need to accept people with disabilities as humans, just like any of us who deserve a chance to succeed in life. We are all born with our own set of strengths and weaknesses. When you see a differently-abled person, instead of staring or whispering about them, remember to look at their strength, the hardships that shape them and their perseverance.
As moms of special needs children, we are continuously faced with challenges ranging from financial difficulty of providing therapies to help with speech or movement, to the feelings of exhaustion and societal isolation. Fatigue and interrupted sleep can be physically taxing for the body. Most parents of special needs children are unable to sleep through the night for years.
As Meg Blomfield, author of On Angel Wings: A Journey with Ohtahara Syndrome, once said: “Somewhere along the line we stopped trying to fix the child that we had expected and started to enjoy the child that was.” We find joy and satisfaction in knowing that each accomplishment, however small it may look to others, is a major victory. Know that each of your child’s achievements are, at least partly, your own.
Feelings of grief can become very strong when one starts to think about what one had imagined parenthood to be like. There is a constant feeling of not belonging even in big groups of moms, as everyone discusses their kids’ achievements in swimming or soccer, while the highlight of my week was often things like seeing my child lift his spoon in therapy session.
Financial burdens, including cost of treatments, services, therapies and medical expenses, can also take a toll on mental well-being. Increased worry, hopelessness, stress and frustration lead to depression in special needs moms. It is important to seek help and know that you are not weak or failing. You are human and doing the best you possibly can.
The first few years are the hardest but things start looking better and brighter when you see your child progress and achieve their goals in their own way at their own pace. It is important to understand that they may take longer, but that they will get there. As moms of special needs children, we know that they don’t have a disease that can be cured. We can try our best to manage their conditions and give them the best quality of life possible. It feels amazing to see your child for who they are, and the moment when their diagnosis doesn’t matter anymore is a liberating feeling.
As Meg Blomfield, author of On Angel Wings: A journey with Ohtahara Syndrome, once said: “Somewhere along the line we stopped trying to fix the child that we had expected and started to enjoy the child that was.” We find joy and satisfaction in knowing that each accomplishment, however small it may look to others, is a major victory. Know that each of your child’s achievements are, at least partly, your own.
If you know a mom with a special needs child, do reach out to her and let her know that her love and goodness does not go unnoticed. We must learn to find healthy ways to cope with the stress we face daily, and we need to accept that it is not a stage in our lives that will pass. Find things that are therapeutic to you and help you relax.
Scheduling self-care or just some time for yourself on a daily basis can help de-clutter the mind. It can be as simple as going to the gym or for coffee or just being able to sit in a room by yourself. It’s important to do whatever it takes to keep ourselves healthy — both mentally and physically. Slowly, with your child’s progress, things start falling into place and that becomes your new normal.
Remember that you are the backbone of your family, and you are worth it! Being a mom is nothing like I expected it would be, but I wouldn’t change it for the world.
Published in Dawn, EOS, May 26th, 2019