by Amala Mani
This post is for someone who is looking for a motivation today..
Recently I’m seeing lots of parents busy in social network groups. Thanks to our technology that we have thousands of such support groups. I feel that the purpose of such groups should be something like, helping parents find suitable resources in there residential city and maybe for some push and suggestions when struck. For e.g., I want to find schools which support best for special need kids or when I’m struggling with potty training my kid, I can ask some suggestions for strategies to use.
But in the recent days, I’m seeing lots of groups which are going in more depth apart from the basic supports. It has become more like a medical support group and the discussions are about more than vitamins and calcium.
Chelation of lead, digestive enzymes, toxic control measures, MNRI therapy, GAPS, MAPS. Make your own Liposomal gluthione, Medical Marijuana, OAT test, Magnesium Glysinate, Nystatin, Zinc deficiency, and much more!
It’s okay to share some nutrition food recipes for picky eaters, age appropriate IEP suggestions, service providers, buying sensory products with good deals.
Let me tell about myself. I’m a mom of a kid with Autism. As well as I am a behavior technician working on the Behavior analyst certification. When my kid was diagnosed with Autism I was very concerned about getting him the cure. Google was my first tool for getting awareness about anything.
I wanted to do everything for my kid. Even if it was a medical treatment for 1 million, I thought about selling my house for that if it is going to cure it.
But not now. Not anymore.
Each Kid in Autism is different. They are differences in their level of functioning, differences in their behaviors, differences in the challenges they face. But the underlying term is still “Autism”. People with Autism often gets diagnosed with other morbid conditions (anxiety, depression, attention-deficit/hyperactivity disorder (ADHD), gastrointestinal (GI) problems, sleep disorders, epilepsy and much more).
Sometimes you can cure the other conditions with the help of doctors but till date there is no direct cure or a magical pill for Autism. Kids sometimes grow out of Autism too, but still it’s not a cure.
My kid had a behavior of banging his head against wall and floor when he’s denied something. With the help of functional communication, now he has grown out of that behavior. My kid had frequent elopement instances. Now with the help of social stories it has reduced.
One day when a kid with Autism overcomes and handles all the behavior challenges she/he faces, she/he would grow out of Autism. Growing out of Autism means that a kid can be functional and look like a typical peer socially. But still some part of him might have Autism throughout the life sometimes. He could be productive at work but not still social with co-workers. He could get a grade A in general education, but sometimes may not able to talk and express how he feels. When typical kids break rules, he would be hard wound around those rules. There are no stereotypes on how an Autism kid would be. Autism with all the differences breaks all stereotypes. Autism comes with Pros and cons. Sometimes the Pros are Cons and sometimes the Cons are
I asked my doctor about the overflowing treatment suggestions. He said that some of them may have shown results in few kids. But they are not widely accepted since it’s just for one set of people not for all. Parents try these with personal interest and they are facing some side effects too. And as you know each kid is different, of course the behavioral interventions and medications differ too. Follow your heart but in case of medical interventions choose a good doctor who best suits your kid and follow him/her rather than following what other typical parents with Autism kid do.
But still there is one such thing which could bring your kid out of Autism one day. It’s not a magical pill. It’s you. Have you ever thought that when a ABA, speech or occupational therapist who is entirely new to your kid and spends just one hour a day with your kid can bring so much of changes and progress in him, what magic can a parent do who lives with the kid and who knows the kid the best.
A PARENT IS THE THERAPIST FOR A KID WHO DOESN’T COME WITH A BEHAVIORAL PLAN BUT KNOWS WHAT THE ULTIMATE GOAL IS AND WORKS TOWARDS THAT.
Cut of most of the screen times and use only when required – This is for the parent more than the kid. Some special need kids uses gadgets for essentials purposes which is absolutely fine. But unlimited youtube and TV time may not help in their progress. Routine and rules helps a lot. I stopped my kid’s screen time; occasionally he gets some time to watch his favorite movie. Rest of the days as a working parent I don’t get luxury time to spend with my kid. All I have is around like 4 hours a day during weekdays to work on some magic with him.
We play, we learn, we do clean up, laundry and sometimes even cooking together followed by family dinner time. At the end we read bedtime stories together and that’s how our typical weekday looks like.
Well I know cooking sounds scary to many. I make my kid watch what I do and keep explaining him about all the steps I do. Make sure that I’m attentive to him all the time. His actual involvement would be like get water from dispenser, some whisking, getting the required vegetables from fridge, putting the used bowls in the sink.
Our ultimate goal is to make our kid as much independent as possible as they grow without any assistance and so Life skills are always my top priority.
This is how I set priority for my 4 years old.
Life skills -> functional communication -> Social skills -> Plays skills -> Academic skills
I’ve taught him how to cross the road even though I always hold his hand when we cross road and most of the community signs. He knows the steps on how to cook egg even though he hasn’t cooked one. He know how to put laundry, water the plants, take a bath, dry himself and partially to dress himself too. There is lot more of the ocean I need to work on with him. I love to take my kid outside, I love to see him exploring and getting excited seeing new things. Of course he gets his ABA, Speech and OT during weekdays. But weekend is all ours. We explore all places around us – Parks, kid’s gym, play area; grocery shopping and definitely all of them were not easy. We all know how challenging it would be to manage an Autistic kid at public places. It’s not easy at all like all other typical kid’s parents do, but we can definitely make it possible. My kid had severe meltdown in play grounds, had tried to undress him few times in public places, had instances of elopement and screaming everywhere outside home. But none of this will stop me from exposing the world to him. In every such instance I take an opportunity to teach him the right behavior. A child with autism can’t engage with the world if kept at home is my thought. Even though the day seems little stressful, at the end of the day I feel relaxed and satisfied that though I didn’t win the battle today I fought well. He’s still learning and I think I’m going to teach him to differentiate the right and wrong behaviors for the next couple of decades. I occasionally get a 3 hrs. respite. I take that to refresh myself and again start to walk my journey with him. I always get inspirations from other parents and their struggles which motivate me every day, which keeps me going. I’m not gonna give up on him at any part of my life. Rain or storm we are going to face it together and definitely the Sunshine too one day.
I’m a software engineer by profession, a behavior technician by passion and the interesting part is I’m also a mom of busy toddler who is autistic. In fact he is the one who defined the passion in me when all I did was just working with the computers and talking in emails. With that I’m working on my BCABA credentials and also practicing as a behavior technician in part time while working with an IT giant in my full time.