A loud, high-pitched laugh pierces the still evening air. Screams of delight and more laughter follow. Suddenly, a child with a bob of blond hair zooms past and heads straight for the puddle of water that had form under a leaky gutter. A woman dressed stylishly in designer jeans lovingly yells “Ethan! You little rascal.”
Six-year-old *Ethan McKaine is the fun-loving son of *Elaine McKaine. He is articulate, gentle and clever. He is like any other child his age except for some unusual traits —Ethan has Down Syndrome .
McKaine first found out about Ethan’s condition when she was four months pregnant. She was given the choice to discontinue the pregnancy according to UK health guidelines, but she opted to keep Ethan “after much moral conflict within.”
The should-haves and could-have-beens.
“I spent a miserable few months blaming myself and wondering if there was anything I could have done to prevent the disability,” McKaine shares. “You’re overcome with guilt and anger.”
Doctors and disability support groups say it is normal for parents to go through the grieving process when they are told that their child will be born with a mental or physical condition.
The US-based National Dissemination Centre for Children with Disabilities explains that learning that you have a special needs child can be as traumatic as receiving news of a loved one’s death.
Parents first go into denial.
How long it takes before they move on to the other stages of grieving depend on them and also the support that they are getting. The five stages of grieving are:
Stage 1: Denial and isolation
Stage 2: Anger
Stage 3: Bargaining
Stage 4: Depression
Stage 5: Acceptance
Read up and plan.
For mother of three *Frances Gordon, research became paramount to her and her husband, once the news had settled. Her youngest son *Laurence Gordon was born normal but started showing learning difficulties when he was about two years old.
At first, the doctor suspected that Laurence was deaf. When that was ruled out, they said it was autism and then Asperger Syndrome but both those conditions were also excluded as Laurence did not show typical characteristics of either one as he grew older.
“Until today, they can’t say for sure what he has except that he has a hearing and learning difficulties,” says Gordon. However, in those uncertain days, she and her husband read ferociously and were not afraid to find out as much as they could from their doctors as well as from support groups all over the world.
The McKaines and Gordons agree that researching their child’s condition was important as it helped them understand what they were in for and to reorganise their lives accordingly.
“It’s not as straightforward as setting up a college fund like you would for any other child. Medical, developmental and mental health care are just some of the things you need to plan for,” says Gordon.
There is also the question of death. “What happens when my husband and I can’t care for him anymore or if we die? I can’t assume that Laurence’s other siblings will take over our responsibilities,” says a pragmatic Gordon.
Both the McKaines and Gordons have set up trusts funds for Ethan and Laurence, respectively, to ensure that they will be taken care of. They have also researched the medical and learning care that their special needs children require and set aside at least 10% of their incomes just for those purposes.
Gynecologist and obstetrician Dr C.H. Chew says parents must take into consideration that children with special needs live longer nowadays, thanks to modern medicine. “Costs vary depending on the different conditions,” reveals Dr. Chew.
Empathy and positive outlook
According to Dr. Chew, it’s not just parents who experience an emotional “roller coaster” when dealing with the challenges of having a special needs kid in the family — siblings do too. They may feel anger, sadness and even jealousy as their parents often need to pay extra attention to the child with special needs.
In Gordon’s case, she had to explain to Laurence’s older siblings about their little brother’s condition and “how Mummy and Daddy love all of you equally”. “Now they look out for Laurence. They’ve become his heroes,” says Gordon fondly.
As for public reaction, McKaine and Gordon say one must steel onself and be patient. “There will be stares, finger-pointing and remarks but there are also the kindest souls who will touch your heart in the most unexpected ways,” says McKaine.
“Life becomes more,” McKain pauses before continuing “…interesting when you have a special needs child. A fellow Down Syndrome parent once told me that you never regret that you had a special needs child and it’s true.”
She adds, “You feel sorry for yourself at times for sure but then there are magical moments with your child. Ethan has taught me patience and unconditional love in the simple and innocent ways he sees the world.”
*Names have been changed to protect the subject’s privacy
What I wish I knew when my special needs baby was born
It is never easy for any parent to hear the news that their child has a disability. It is normal to feel guilt, anger, denial and depression but with support from your loved ones and guidance from healthcare experts and support groups, you can learn to care for and enjoy your special needs child just like any other.
- Allow yourself to grieve. Finding out that your child has a disability can be traumatising. Allow yourself to go through the five stages of grieving (denial, anger, bargaining, depression and acceptance). Speak to doctors, your family members and significant others for emotional support.
- You’re not alone. There are other parents out there who are in the same situation as you are in. Ask your doctor or friends to refer you to them. There are also organisations and support groups for special needs that provide assistance to parents.
- Seek info. Do not be afraid to ask a lot of questions. Do your research and ask for additional information from your doctor. Learn the medical terminology so you know what to expect and how you can plan your future.
- Set up a fund. You should consider setting aside enough money for your special needs child especially in the event of you or your partner’s passing.
- Financial planning is vital. Caring for a special needs child is expensive. Sit down with your partner and/or accountant and take an honest look at your finances. Make necessary changes. Remember that children with special needs require a wide array of medical, behavioral, developmental, learning and mental health care. Check with support groups and government agencies for aids or programmes that your child qualifies for.
- Avoid Pity. Stop feeling sorry for yourself or for your child. It can be very disabling for both of you to continue the self-pity. Empathy and positivity is what you need to instill in yourself and in your child.
- Always look on the bright side of life. Surround yourself with optimistic people and create a positive environment for yourself, your family and your child. It is more challenging to parent a special needs kid but it can also be so much more rewarding. The life lessons that you will experience are priceless.
- Keep daily routines as normal as possible. This is especially important when you have other children. Consistency brings comfort to your other kids as they slowly understand and accept their special needs sibling.
- Dealing with others. Decide how you want to deal with others. It is normal to feel angry, guilty or upset about the way other people react to your child. These reactions are often caused by lack of understanding or fear of the unknown. You will also need to educate your other children about their special needs sibling and how they should handle taunts or questions in school.