Allowing your emotions to flow on paper in itself can be difficult at times and allowing them to be out there in the open for every one to see, is quite something else. I could have easily decided that I will share what I have learnt about the autism world without it being personal. It would have looked liked a well-researched article perhaps. The thing is, when I started learning about autism at the time we recieved the diagnosis, I got a lot of information but it was the blogs with first hand accounts and personal experiences that energised me.
Not to Share
The part of the world I come from, its not easy to share that your child or grandchild has developmental issues or has disabilities. The word autism is like a stigma that is best not uttered. Infact I almost sense that this is something people are ashamed about and want to hide. And if, like in our case the child looks as typical as his peers, parents may be in denial for longer than they should be and they would prefer that it is not addressed! I have heard from mothers of children with ADHD(Attention Deficit and Hyperactivity Disorder) that the father usually finds it difficult to come out of the denial phase. This is because children with ADHD may be good in academics and communicate as well but lack social skills and/or have difficulty self-regulating. So often its easier to say ” He will grow out of it”. This causes so much tension in the households and there is significant delay in managing the autism. When in denial, the question of sharing is out of scope! What if my child is not asked for play dates or invited for birthday parties? This fear that our child may be alienated, deters parents from being open about the diagnosis and they loose out on the benefits of sharing.
To share As parents we sometimes tend to seek validation or want to be heard out without being judged or simply want to brainstorm on domestic problems. Parents caring for children on the spectrum really want more such oppurtunities but instantly feel the lack of it because friends and family in most cases can’t really identify with their situation. This so called Autism Spectrum is as broad as the number of kids diagnosed with the disorder. It just means that within the autism spectrum, each child presents unique challenges. Yes, there are some broad categories but if two mom’s with the same diagnosis were to discuss, they would find that their children are so different. So this makes it even more challenging to seek specific answers to manage the situation they are in. However, if more parents were to share and information got more specific, imagine how helpful that would be. Just as helpful as all the parenting sites you register with when you are expecting your first child. Apart from sharing within autism groups, being open about your child’s challenges, gives a chance to parents with neurotypical children( another word for typical or normal children) to accept and make accomodations for your child. While it is difficult for them to understand all of our challenges atleast we offer them a chance to sensitise their children to the needs of our children. This allows for more social interactions which is so essential for our children. When I shared my first blog, I was asked by a family member-“Is this going to be read by everyone? Why let everyone know about your child?” Yes, I am writing about how I am helping my child and my world revolves around him but the focus in these blog posts will always be the process and not my child. Sharing the process especially if you think it works well, I believe is a good thing. We are all familiar with how sharing of best practices, be it in workplaces or businesses has only been beneficial, so why not put it into play in this aspect as well?
To my fellow-moms When Prince Hamlet said “To be or not to be” , he was deciding whether to stay alive or escape from his troubles by dying. To share or not to share, is synonymous in the sense that it it is about deciding whether to help, enrich and live positively or choose to be in a shell that gets hard for you to handle in this long haul.