If I could go back in time, I would tell my children more frequently how much they meant to me. I would have used extra respite time just for the two of them. I would set aside a day a week or a few hours for the siblings individually or together, their choice, on their time and terms. Physical needs is equally important. Our special needs child take away almost all our energy for therapy, researching, meeting, school support. How about their “normal” siblings, they need us too. Don’t repeat our mistakes.

Crying babies get the milk. Ernest, being the firstborn, got all: milk and attention at the expense of everyone else in the family. Being a young mother, I needed help. Without any extended family’s help, consultation, and with Dad always away for work, I had, by default, Ernest’s younger brother as my little counselor and helper. The younger brother has now suddenly “grown up” and was tasked with being the “know-all” and “do-all” for Ernest and me. He was expected to be Ernest’s caregiver at Sunday school, his assistant at the male public toilet, his escort at kids’ birthday parties, and his mommy’s counselor when she was down. It was not until the brother, who is only two years younger than Ernest, blurted out at a very young age, “Mom, I am also a kid, you know”.  If my daughter had been born then, she would have said it was child labor.

School age

Ernest was considered in those days “severely autistic”. During school days, I would have to race to school to secure a parking spot, park my car, and walk up to his class to physically “collect him” from his teacher. I never had the privilege of driving through the waiting bay and just signaling to the waiting kids to get into the car. Physical exhaustion was an understatement.  As they were growing up, these were the questions I was often asked. “Mom, will you be coming to my school sports day?  I am in the final short distance race; Mom, you are invited …” Whenever the children asked those questions, they knew the answer. Mom was going to say, “I have to pick up your brother”.  He was used to Mom being busy with his elder brother.  After some time, those questions disappeared without me realizing it.   I am sure there were more pressing and important questions and discussions the children did not mention…after all, Mom was busy with Ernest.

So now mama is a strong advocate for Ernest in school. How do I expect a young elementary/ primary school sibling to react during those school recess when some children are making fun of their brother?  Stand up to protect him, stay ignorant, or join in the taunting? I cannot remember if I discussed these issues with them. These are the issues that must have affected their emotional needs.

I feel guilty for not being a better mom to my two younger children when they grow up. The excuse that I can think of is that we were not prepared for our firstborn to have special needs. Who would have been? We did not have any family members or friends with autistic children.  Never came across one, and there was no benchmark. Autism was a totally new diagnosis and social awareness thirty years ago.  Our second boy followed closely behind by two years. Our daughter was six years younger than Ernest.  Someone once asked me, ” Did you know autism is genetic, really?  I didn’t believe it was. Ignorance was bliss. Otherwise, Ernest would not have had any siblings. 

It wasn’t until the last ten to twenty years that service providers and organized bodies started to “create awareness” and programs were put in place to help siblings cope and strategize their emotional and social challenges.  I am guilty of some of the points below because I made these mistakes.

-Don’t expect the “normal” children to know your problems and become your unintentional counsellor. “Information overload” is how my daughter put it. Children are very precious and fragile. They have often been overlooked or neglected because they are not the squeaky wheel or the crying one. The placid child may get nothing. They face many challenges that are invisible and intangible. Often the siblings are more sensitive and vulnerable to their surroundings than the special needs child.

-Try not to use your default free labor (the siblings).  My daughter called that “child labor”. They need to spend time with their friends too. Consider joining some family or sibling support groups. They are readily available in bigger cities. If not, form your own network or support group with people you can trust and with common chemistry.

– Emotional needs for children were something that never occurred to me.  It was not a term as I was growing up; therefore, I did not know how to apply it to my own children. If I could go back in time, I would tell my children more frequently how much they meant to me. I would have used extra respite time just for the two of them. I would set aside a day a week or a few hours for the siblings individually or together, their choice, on their time and terms. I would totally shut off my phone to avoid digital distractions; no cell phones.  It should be strictly their time.  Library, beaches, movies, ice cream.  I would try not to use electronics, such as putting my children in front of a TV program or electronic gadgets to replace my time with them.  My two other children would have appreciated more constant affirmation, guidance, and unconditional love.

– Glad for those days when we played some fun games as mom and children. Hiding under the blanket and pretending we were under the sea to watch turtles and dolphins, or in the rocket, seeing the different stars and naming them.  Those precious moments where we could smile, hug, kiss, tickle, read, dance, jump, play, or crawl. The three principles that I was taught as a young mother- consistency, frequency, and intensity- applied to all the children, whether they were special needs or not.