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Embracing the Journey:

Islam teaches that all children, regardless of their abilities or challenges, are a blessing from Allah. Each child is viewed as a trust (Amanah) and a gift, and parents are encouraged to care for their children with love, compassion, and dedication. The Quran and Hadith offer guidance that emphasizes the importance of mercy, patience, and gratitude in parenting.

This approach is one my husband and I have wholeheartedly embraced with all our beautiful children, especially with our son, Idrees. Our journey began back in August 2020, during the peak of the COVID-19 pandemic. As a new mom whose lifelong dream was to become a mother, I was truly on cloud nine.

Early Concerns

At our six-month appointment, I expressed my concern about Idrees’s lack of response to his name. Besides that, Idrees had been developing beautifully, even ahead of schedule. My doctor reassured me that milestones were merely guidelines and not to stress as each child develops at their own pace. Despite this, my instincts were telling me something was off. The doctor tried to ease my worries, promising that we would reassess at the next milestone.

By then, I had one more concern: he wasn’t looking where I pointed or pointing himself. At this point, I demanded an intervention and evaluation. Thankfully, my doctor suggested looking into Developmental Intervention Services.

Seeking Answers

When Idrees was 11 months old, we welcomed two evaluators into our home, just one month shy of his first birthday. It was then confirmed that Idrees, my baby, my firstborn, needed help. Intervention. The word echoed in my mind. What had I done wrong? What hadn’t I done enough of? These thoughts flooded my postpartum head, leaving me uncertain and confused about what this could mean.

I had blended all his meals since he was six months old, frequented the farmers market, and only shopped for organic produce. We even opted out of vaccines. How was this happening?

The Search for Understanding

I did what anyone would do: I turned to Google, frantically searching for answers. I typed in his delays, and the word “Autism” popped up multiple times. There it was, despite everything I had done to avoid this outcome. Little did I know, Idrees was only three months away from an official diagnosis.

Journey through The Spectrum

Navigating the Journey to Intervention

When faced with the challenges of securing intervention for my son, Idrees, I found myself in a whirlwind of emotions and obstacles. At first, it felt like an uphill battle as interventionalists were cycling in and out on a bi-weekly basis, making it hard to maintain consistency and see progress. Despite my growing concerns over his behaviors—like constant spinning, shadow-following, hand-leading, and limited communication—I was met with resistance from our case worker when I pushed for more support. Although my concerns were acknowledged as valid, I was advised to wait six months for a reevaluation of hours, leaving me feeling numb yet determined to advocate for my son.

The Search for More Support

Determined to find the help Idrees needed, I turned to the internet and discovered Applied Behavior Analysis (ABA) programs, which could offer up to 40+ hours of intervention. However, I soon learned that a developmental delay alone was not sufficient for access to these services without a formal diagnosis. This realization set me on a quest to find a developmental pediatrician, only to be faced with lengthy waiting lists—some stretching over two years.

Securing an Appointment

In a moment of desperation, I took drastic measures. I called the pediatrician’s office, expressing distress and urgency, explaining that my husband was out of town and this was my only chance to get help for my son. Through tears and a fabricated scenario of family difficulty, I managed to secure an appointment at the front of the line, reducing the wait from 24 months to mere days.

The Evaluation and Diagnosis

With the appointment finally in hand, I walked into the evaluation room with a mix of hope and denial. As much as I wanted to believe Idrees was ahead in some areas, the developmental pediatrician wasn’t convinced. By 3 PM, November 2021, just 14 months old, Idrees was diagnosed with Autism Spectrum Disorder (ASD).

Embracing Intervention

With the diagnosis, Idrees was eligible for 40 hours of ABA therapy per week, in addition to the 4 hours of developmental intervention (DI) he was already receiving. We quickly began scheduling these sessions, ultimately utilizing close to 30 hours weekly. These sessions became a family affair, as I was actively involved, ensuring an open-door policy and monitoring progress with home cameras.

Moving Forward

Now looking back, I realize that we are not defined by what we could have done differently. This journey taught me the importance of perseverance and advocacy in securing the necessary resources for my child. Our story is just one of many that highlight the transformative power of parental advocacy. Whether your advocacy involves navigating educational systems, seeking medical interventions, or simply being a steadfast source of support, your efforts can make a significant difference in your child’s life. We hope our experience encourages you to trust your instincts, seek out resources, and never underestimate the impact of your advocacy.