World Autism Awareness Day: The struggles and triumph of a Special Family
Today, April 2 is World Autism Awareness Day.
I originally wanted to post “A letter to all the parents with kids diagnosed with Autism”, but I can’t compose it properly. I don’t know how to put everything in my mind into words.
That is why I decided to just make this post about the things I learned about Autism.
- Autism is considered as an invisible disability, most especially to those who are in the level of high functioning or what other says as a mild case of autism. It is hard to know if someone has it in first glance. In this case, the society expects them to act and function as a typical person. They are the one who are usually bullied and are misunderstood. The kids with Asperger’s or mild autism are usually good in academics but usually struggles in socialization. They can’t maintain a spontaneous conversation.
- Just like ordinary and typical people, a person with autism are different from each other. The signs listed below can be present to one child but not present in others even though they have the same diagnosis. Not one child is the same.
- Early intervention is advisable to help kids with Autism to function and to help them cope up in the real world and not stay on their own world.
What I mentioned here are just a small portion of what you can read online, Go on and do some research if you want to know more.
The PARENTS’ STRUGGLES:
- Being Alone on the Journey – In this world where every one acts like everything is a competition, parents with kids with special needs usually feel they are alone. I for instance, started this journey with my son when he was just 2 years old (he is 6 yrs. old now), I should know how to react to questions and criticism concerning my son, but still every time someone says to him ” you are already a big boy you should know how to do this and do that, or you should act this way and that way, etc”. It makes me feel that they are saying that I am not doing my job as a parent to teach my son how to act properly. Sometimes, I still feel like an outsider on the circle of moms of typical growing kids.
- Not able to talk about the kids with Special Needs – There are times that you may want to share everything but you just can’t. I for instance, can’t share all the things happening on our journey because I need to consider some people who are close to me who are not that open minded on the idea. Some reactions I have received were, “OA ka lang, mukhang wala naman problema, baka pag nabasa ‘to ng anak mo pag malaki na sya, e mahiya sya“. This is the reason why I think twice, thrice or million times before I post anything here. I have lots of things to consider that hinders me to share our story which may inspire other parents out there who are having the same journey. (read more here)
- Providing for the child – a child diagnosed with Autism are suggested to have therapy sessions to address various issues that they need. <1>To function and act accordingly to the real world they need an Occupational Therapist. <2>To be able to communicate properly and improve their language, they need a Speech Pathologist. <3>Some parents even bring their child to Applied Behavior Analyst (ABA) to help the kids in generalization. <4>For special kids who are on mainstreaming programs, they may require to have a shadow teacher or a SPED teacher to help them. <5>Some kids need to be in a Special School. Guess what, if you are earning a minimum income, these interventions will eat most of your family budget. Per session to a therapist and SPED teacher is usually around P500-P700, a shadow teacher’s rate is usually around P6,000/month. A tuition fee to a special school is triple the cost of a regular school. Oh, by the way, a trip to a Developmental Pediatrician cost around P3,500- P4,000. Just imagine how much does each parent need to earn monthly to provide for their kids who needs these interventions. I don’t know how, but I am glad we were able to provide my son the various therapy that he needs from the first day up to now. I don’t regret all the expenses though, because I saw a big improvement on his skills. Kudos to all his therapist who helps us on our journey. I hope though that the Philippine Government will create more facilities to all the kids with special needs who have parents who have no capacity to provide for all their needs.
- It is tiring– Here in the Philippines, it looks like we parents can’t complain about raising our kids. If we voice it out, we will look ridiculous to other people. It is our culture to have the family in the center of our life. But the truth is, parenting is really tiring and it is more tiring if you have kid/s with special needs. I’ve seen a lot of cases: from the one banging his head on the wall, to the one who keep on spinning around to the one who can’t stay and be still even for just a minute. Imagine yourself in the shoes of these parents, you will agree with me that it is really tiring.
- The day this challenged kid learned to sit even for just 2 minutes is something to cheer up.
- The time he learned to say his first word was a victory.
- It’s like you won the lotto when he learned how to pee and poop on the toilet on his own.
- Being able to conquer his fear is just like winning from World War II.
- Looking at you while you talk, makes your eyes sparkle in awe.
…. and a lot more. Simple things that they do is a triumph to all the special parents.
There are a lot of challenges and at the same time there are a lot of things these special children also brings to their family as well.
Here is a simple message to the society: