Charlene - our bridge to others

Before we had Charlene, Dez and I knew very little about special needs children. Sure, we know the diagnosis and the implications, such as Down syndrome and autism. When we see those children on the streets, we viewed them and their parents with sympathy... but not empathy. We could never understand what the children and their parents are going through.

Charlene became our bridge to the special needs community. Three and a half years, and I have known many families with special needs children of various conditions. From the children on the school bus to the children in Rainbow School, I gained more knowledge of the behavior of autistic children, those with ADHD, those with tracheostomy. 

But still, I will not fully understand what those parents are going through. Why do I say that? Because each family experience different problems in the care for their child. It is very hard to understand the problems... even for kids with the same clinical problems, the manifestation and the management may be different between parents.

Take our family for example. Charlene was born with nothing. She was not expected to breathe on her own, not expected to have voluntary movements, not expected to be able to do anything at all. In some sense (glass half full sense), it was easier for us. Every single thing she was able to do (from her first opening of eyes, to grabbing our fingers, to sucking the pacifier, to smiling, to crying and cooing), we celebrated, we cheered, we thanked God.

In contrast, some of the special needs kids we met had been normal children... until some neurodegenerative disease hit them, and they lose their functions slowly. The loss and pain their parents had felt must have been much worse than what we have went through. We really salute the strength and the resilience of those parents, as they do their best to love their children unconditionally.

There are also children with physical disabilities (e.g. cannot walk, cannot swallow) but their cognitive ability are unaffected. But still, it is not easy for them too. It may be difficult for those children to attend mainstream schools, as the parents worried about whether their children can be accepted into the normal society. Again, we salute those parents, as they strive hard to help their children integrate into mainstream society.

There are also children with mild learning or behavior disorders who looks like any normal children. They can feed themselves, they can walk, they can talk, they can do anything you and I can do. But they have behavior issues... they may be rude,  impatient, and inconsiderate. The society may frown upon those kids, and labelled the kids as having poor upbringing. Again, we salute those parents because they have to manage  societal expectations for their kids.... they may often have to explain the kids behavior to others as they do their best to teach the kids.

Personally, I salute parents who are taking care of children with tracheostomy. I cannot imagine the heart pain of having to suction your own child so regularly and seeing your child struggle. 

What Dez and I learnt is that we can never, ever understand exactly the difficulty of taking care of each unique child. We learnt not to assume we know best for other kids... we learnt not to question other's actions. We remember that parents want the best for their children. In the case of tracheostomy, I believe that parents perform suction out of love and necessity...they want the child to breathe comfortably. They want the child to continue to live, and hence they are prepared to endure the heart pain of seeing the child struggle during suction. 

For many of us, to see our child happy and healthy is all we ask for.