I am outsider. But I feel like an insider.
Even after 20 years, when I meet a new family, this feeling does not go away.
Today I saw a cute, 3 1/2-year-old with his family. He has a diagnosis of Autism Spectrum Disorder. He had been diagnosed a year prior.
The diagnosis does not just affect the child. It affects the entire family.
The parents are on edge, overwhelmed and sorrowful, as they deal with the condition. I could see how strong they try to be.
The 10-year-old sister tries her best to be cheerful. She seems like a second mother to the child. The parents’ sorrow and the little girl’s lost childhood weigh heavily in the air.
The child himself is affected by attention issues, eating problems, sleep deprivation. He sleeps just one hour in the day time and three hours at night. He has low body tone. He interacts for about 5 minutes, but then needs to lay down. His energy gets depleted quickly. He has an unnatural gait and he looks a little malnourished. He initiates interaction, but cannot sustain it for more than a couple of minutes. He jumps up when music is played, but he tires quickly and then becomes passive again.
I see the goodness in the parents’ eyes. I see the beautiful smile on his sister’s face.
Why, why does this have to happen?
Why do they have to go through this?
Why do good people suffer?
Sometimes, we desperately want to change something about our lives. Unfortunately, those things are beyond our control. The only thing we can do is to accept those situations and move on.
The saving grace is that things are better today than they were 23 years ago, when my son was diagnosed.
Diagnoses come in faster these days. 1 in 68 children is diagnosed with Autism Spectrum Disorders. There is more awareness amongst doctors and the general population as well.
Since awareness is better, more people are offering services. To deal with the increased number of children diagnosed with the condition, centers have sprouted up in various places.
There are wonderful organizations such as Forum for Autism, a parent support group that is very active. There are specialized groups such as CG initiative which comprise of specialists who go out of their way to support families.
When faced with autism, we need to keep in mind that-
Autism is not just going to ‘go away’ or ‘vanish’. We’re talking about a differently wired brain.
Thus you have the responsibility to help your child navigate this world. Specialists are there to help, but you spend the maximum amount of time with your child. Plus, never forget that nobody knows your child better than you.
If I could sift through the sands of my past and offer you one gem, here is what that would be.
What is the one small change that you would like to make that would affect family dynamics? In the above example there are several things that could be changed to enhance family dynamics. And thereby improve the quality of life for the family.
a. The mother gets time to nap as the child naps in the afternoon
b. The parents spend quality time with their daughter
c. The mother makes time for daily exercise
d. The father reduces his travel time to and from work
e. The mother and father get to spend some time with each other, alone
Making all these changes would be ideal. But it’s overwhelming.
The idea is to choose one of these and work on it for a fortnight so that it becomes a part of life. There is so much to do. There will always be a lot to do. What we want to change is one little step and then one little step and then one little step. Get the picture?
One of my jobs as a family consultant is to assign objectives for parents and child.
I need to ensure that I assign these as bite size pieces. Before a family leaves, I am accustomed to asking, ‘are you clear about what you are working on this week?’
Too much information is overwhelming for families. Give pieces that can be implemented with ease. Yet show them a road map of where they are headed.
This keeps everybody on track.
There, I’ve shared my trade secret with you!
Most of us work with different specialists and have a variety of goals for our children. We may be working with speech language pathologists, occupational therapists and a host of other specialists.
It pays to put down weekly or fortnightly objectives with regards to each kind of service. Let me share my bite-sized goals for the week.
A.) Mohit will move easily from one end of the table tennis table to the other, while playing table tennis.
At present, he can pass the ball back, but movement is not fluid. This is one small step that will enhance the game of table tennis, which is a wonderful recreational activity for Mohit.
B.) Mohit will link an additional word to nouns that he uses while asking for things.
At present, he is accustomed to ask for things by using one word. In consultation with his SLP, I have decided to just work on this one step for this week.
C.) All his teachers also have been informed about this.
If everybody is on the same page, consistency in follow through will occur.
Get the drift? If you focus on one small aspect, the goal is no longer intimidating.
23 years ago, I had asked my spiritual mentor why I had been given a child on the spectrum. He said it was for my own spiritual evolvement. “You are never given something that you cannot handle,” He said.
I cried and cried. And I said, “I can’t handle it. Surely, there must be a mistake.”
But there are no mistakes. My son is 26 today. We’ve come a long way. So far, that I’ve handled it and so will you.
Just take that one step for today.
Just take one step every day.
Focus on the good emerges every day.
Soon you’ll be soaring like an eagle.
I would love to hear your achievements and challenges. After all, we are one large group, supporting and encouraging each other at every step. Also please free to ask me any questions. I will respond as soon as possible.
Image Source Vulcanpost