I was always the happy go lucky kind always trying to see the upside of things. Even in worse of times I had unwavering faith but what shook me to my core was my son’s autism diagnosis. In all my life I had never ever heard of the word autism, occupational therapy, apraxia… the subjects I studied in school and college were all related to science, engineering, business management as I belonged to a totally different field of academics. But as a mother I saw different red flags in my son from age 2 as all his milestones were delayed and I used to make up excuses that he is so heavy that’s why he’s not able to hold his head properly, probably that’s why he isn’t able to sit properly, and might be the reason he is not able to walk up till 22 months. And all the pediatricians I saw said he is just delayed maybe hypotonia (low muscle tone) and nothing major. But I was not convinced as in my heart I was dreading something bad is coming. And after sometime I finally got the diagnosis that he is autistic. It was the day my life changed completely. I didn’t know what to do, where to go, who to call and most importantly how to help my child.
After being lost and sick I started going through the internet to help me through this. As more than him I needed the support. There were days when I used to have trouble getting out of bed. During the day I just wanted the night to come so I can escape from the nightmare I was actually living. Didn’t had the desire to cook, to eat, to shower or call someone. I call it the trauma phase when you are trying to cope but don’t know how. And try to stay afloat but you feel like drowning. The worst feeling you can imagine, your worst nightmare coming true.
Phase 1: Accept the diagnosis
Phase 2: Give it all you have got
Phase 3: Be patient
Phase 4: Take care of your well being
Phase 5: Believe in your child
The bottom line is you have to survive and be strong for your child. This doesn’t happen overnight. It s a process of accepting it, confronting it and fighting it. Easier said than done , it take years to get out of the denial phase, to finally disclosing it to your circle of friends and family that your child is neuro-diverse.
I focused so long on the negatives that I forgot the positives of my child. I’m a highly optimistic person and I had my pessimistic/ dark days very frequently but I never gave in to pessimism. Each morning I gathered the courage to get up and face the challenges. Some days are still really hard. But I am a fighter who will never quit in sha Allah.
It take its toll in all your relationships and that’s when you get to know who the real relations/ friends are. Who likes to hang out with a mother whose child is a sensory seeker, who can go off at any time. During my struggles and prior to his diagnosis I used to feel so drained and tired. We tried really hard to fit in with the other moms at the playgroups, parks, play areas but all we got were weird stares and whispering mouths. Even some friends were made who used to gossip when we were not there. Some lame gossip thing I got from some family members. Then I stopped giving people the benefit of the doubt. And tell it how it is. When you are dealing with an autistic, non verbal, sensory seeker you ran out of patience for the others. And it happened to me. Its has not made me a friendly person but definitely a more hardworking and persistent one, who is a strong advocate for inclusion. All our kids need is acceptance and inclusion. You can change someone’s life by simply including them.
My child was misdiagnosed by a very reputable institute and they wasted a year of my child’s life and exhausted our energy and resources. I used to sit and listen to them, tell me he’ s not capable of much. But I was always homeschooling him and modifying the books and resources according to his intellectual level. And I got to know his strengths which the master of their fields weren’t able to figure out instead they labelled my child “unteachable”.
In this journey I had many mentors and teachers who guided me whenever I was lost. This is just the start but I am hopeful that there’s light at the end of the tunnel. Never under estimate your child’s potential and abilities. They do things their way which doesn’t make it incorrect.
Its not a disease its simply a different operating system.
If an android user is given an Apple Iphone he will be confused at first but then he will get the hang of it. Modifications have to be made in order to make their life easy and understandable for them.
I get messages from mothers of newly diagnosed children that will my child ever speak, does it get better? The truth is it does get better as you get more accoustomed to your child and his condition and he gets more aware of whats expected of him/her. But each day has a new blessing and challenge waiting. Your job is to
be thankful on the blessed day and be patient on the challenging day
This requires team work from both parents as mothers usually experience burn out. Life is going to be different but the more you focus on the positives you will be more content. We are the chosen ones from God and our job is to love and nurture our kids as simple as that. The anxiety comes from the pressures of society and the future. What is going to happen to my child. Don’t give in to that pressure. Defend your child and his needs, respect his sensory cravings and see them become the best versions of themselves. Enjoy each moment of their quirkiness. My son makes me laugh and makes me want to be a better person. The smile on his face make all my sorrows go away.
No matter what disabilities our children/siblings/cousins have, be it autism, apraxia, ADHD, ADD, PDD, GDD, Cerebral Palsy, down syndrome they are all teachable and have the purest of hearts. Its not just a test of the parents but a test for the entire extended family and circle of friends.
May this journey be easy and enlighthing for all of us. More power to the super kids and the super parents.
Peace and love
Resilient Mum