Preparing for a special needs baby

Having a child with special needs changes everything ― here are ways to prepare yourself and your family.

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In most pregnancies, the ecstatic mum-to-be anticipates the birth of her baby with excitement, although she may also be nervous about her parenting journey ahead.

But what if your baby has received a special needs diagnosis? Those emotions would likely be multiplied tenfold, plus you would likely be upset… and terrified.

You may go through a host of intense emotions ― shame, guilt, anxiety. You may blame yourself – “Did I take my vitamins? Did I go somewhere dangerous? Did I do anything wrong?” ―are common questions you’re likely may ask yourself.

Esther Tang, mum to Caleb, 6, recalls the period on first finding out that her son had Down syndrome after an amniocentesis test, “It was like this emotional black hole that I was sucked into, and I stayed there for weeks, crying.”

Her turning point came when it occurred to her that discovering that her only child has Down syndrome was simply part of the process of getting to know her baby. “It was something that every mum went through, just that in this instance, I was finding out that my baby had a little extra something ― that chromosome 21.”

“It was something that every mum went through, just that in this instance, I was finding out that my baby had a little extra something ― that chromosome 21.”

As you await your due date ― you may be wondering, now what? We have suggestions that may help ease you into the journey ahead…

1. Educate yourself
You would probably be Googling about your baby’s diagnosis the minute you walk out of your gynae’s door. But be cautious of what you find on the Internet – often, you may be shown the worst case scenarios, which can scare you.

“It’s important not to panic and to remember that you are not alone. Find out what the resources are and where to find the help available to you,” says Veronica Lim, a senior social worker at Rainbow Centre, Singapore, who counsels parents on how long their child would have to remain at this not-for-profit organisation for special needs kids aged 2 months to 18 years.

Dr Amy Reale, principal psychologist and director of Comprehensive Psychological Services Pte Ltd, encourages parents to get educated about the disorder, including learning about the typical symptoms, types of treatments needed, as well as the prognosis. “Talk to your doctor, look into finding an appropriate paediatrician or specialist, read books and articles, and speak to parents of children with similar conditions,” says Dr Reale.

2. Allow yourself time to grieve
No parent anticipates getting a special needs diagnosis for their child. You may experience stages of grief including denial, anger, and sadness relating to the loss of having a typical child, Dr Reale notes.

Says Tang, “It was the darkest moment of my life with my husband. But we cried, we screamed, we quarrelled. Looking back, it was crucial to us growing as a family, and accepting what was to be the ‘new normal’”.

As a couple, it will take time to accept th ediagnosis and each parent may go through the healing process in different ways and at varying paces. "Having open and respectful dialogues, focusing on solutions, emphasising the strengths in yourself and your partner, and making time to maintain your relationship will be crucial,” Dr Reale advises.

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3. Look ahead
Find out as much as you can about what you should expect in the foreseeable future. How will he manage his daily physical tasks? Where will he go to school?

Lim explains that visitors to the Rainbow Centre usually wish to see how abled or disabled the children are, and how the educators interact with the children, and how they respond. “Children in the high support needs classes may be on special buggies or chairs to prop them up. They may have suction or oxygen support attached to their buggies, or feeding tubes attached to their noses.”

While visiting parents can get shocked by what they see, Lim adds that when they start to interact with the kids, they realise that “it’s not so bad after all, and this helps them to have a shift in their mindset”.

Look into how you will manage financially. There may be additional medical, rehabilitation or therapy bills for children with special needs, plus you may need to think about establishing legal guardianship after he turns 18 or if anything happens to you or your spouse. Your child may need a special diet, medication or physiotherapy equipment ― all of which adds up.

“Try to think about what you will need moving forward, what are reasonable expectations of the other, and how to put supports in place to address any gaps.”

4. Find support
Accept that you can’t do everything on your own. Family, friends and the community around you can provide lots of support. “Some can help in practical ways, like cleaning the house. Others can provide emotional support. Mental health professionals offer understanding and treatment if the grief is too great, and also guidance in how to manage any difficult behaviours in your child,” explains Dr Reale.

There are many organisations in Singapore that can provide support, including Autism Association Singapore, Autism Resource Centre, Down Syndrome Association, Cerebral Palsy Alliance Singapore and Rare Disorders Society Singapore.

Lim adds that religion and spirituality can play a big part in the parents’ acceptance of the circumstances. “Religious-based counselling groups can provide support, and religion can help to allay anxieties and fears.”

5. Communicate with each other
The person you’re closest to in this situation is your spouse, so it’s important to know where each other stands, including how you feel and how you are coming to terms with the situation.

“Talk as a couple about each other’s expectations of the other and what you imagine it will be like when the baby is born,” advises Dr Reale. You should also speak openly and acknowledge one other’s feelings. “Try to think about what you will need moving forward, what are reasonable expectations of the other, and how to put supports in place to address any gaps.”

6. Be positive
Amid all the anxiety, take heart that you are expecting a child ― not his disability. He may have your husband’s smile, or he could be fun-loving like you. He may love Mickey Mouse just like his older sister does, or he may detest the taste of avocado, just like grandpa.

“The baby is yours, special needs or otherwise,” says Mary Heng, who’s 6-year-old daughter Kayleen has Down Syndrome.

“Take time to know your baby and enjoy his company. Shower him with lots of love, hugs and talk to him. Most importantly, believe that he can, even if someone tells you he can’t.”

Photos: iStock

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