Why We Established Magnify Autism

As Told by Johanna Escobar

Conceiving our son wasn’t easy. We went through a lot of heartbreak and sadness before we were finally blessed with a pregnancy that was strong. I, like many other mothers, did everything to make sure that this pregnancy was strong and healthy. I ate right, exercised, eliminated caffeine, didn’t dye my hair, paint my nails, or use bleach when cleaning the house. Pregnancy was a breeze.

When my son was born, life came back into our house. There is nothing more precious in the world than a new life, especially one that you created. I envisioned his whole life the day he was born. He would play sports, read, laugh, cry, enjoy school, make friends, go to college, get a good job, find love, and get married. I couldn’t wait for him to be able to speak so that we could have long conversations about anything he wanted. He would laugh at mom’s silly jokes and explain to his father and brothers why mom is so funny.

I was teaching First Grade in the Bronx, when my son was born. I decided I wouldn’t go back to work until he was at least one year old. Being able to stay home with him that first year was tough, but a blessing. I was there for all of his milestones. Everything was right on track, according to those mom apps.

After he turned one, I noticed that he wasn’t on time with his social milestones. I didn’t see the joint attention, finger pointing, or waving goodbye, so I began to panic. I questioned autism, but quickly convinced myself otherwise because no one in my or my husband’s family has been diagnosed to be on the spectrum.

I made the decision to not go back to work just yet and help him reach his social milestones. I would struggle to get him to answer to his name and to wave bye. I would research on google and would be told not to worry, or to get a diagnosis. I went onto AutismSpeaks.com and saw a link for autism risk. Late at night, I would take online quizzes and my son would score at the 90% at risk for being diagnosed with autism. This went on for weeks. I would cry at night, not sharing the news with my husband because I didn’t want it to be real.

I googled everything there was to know about autism and a lot of what I found scared me. When speaking to my pediatrician, he would tell me not to worry and give it time. According to him, milestones are sometimes met a little later, which is usually the case for boys.
I listened to him and prayed every week that my son would begin to speak, point at something, wave goodbye, or have joint attention with me. Unfortunately, it didn’t happen.

Early Intervention

Prior to my son’s 18th-month checkup, his pediatrician sent two questioners to fill out. One of them was Modified Checklist for Autism in Toddlers (MCHAT), the toddler pre-screening for autism. I answered no to all except one question, my world came crashing down. It’s one thing to get news about yourself as an adult, but to realize that life was going to change for your precious child is another.

I called my pediatrician and told him that I was worried, that I needed to do something. He then gave me a phone number for our area’s local Early Intervention program. I called them right away and began the process of having my son evaluated.

Two therapists came to the house to evaluate him. As they worked, my husband and I held our breaths. They told us he had a developmental delay but didn’t think he had autism so we shouldn’t worry. At that moment, we were relieved. We had a glimmer of hope.

They also suggested speech, occupational therapy, and special instruction, each at two times per week. It was the job of our case manager to make sure these services were in place within 30 days. They suggested that we give my son 6 months of therapy and we would see a difference.

Our Bad Experience

The 30 days came and went, and we were finally able to get a special educator. The special educator rescheduled a million times and always canceled last minute. I would even rearrange my schedule at her convenience and she would still cancel. When I complained about this, her boss told me special educators were allowed to have 10 sick days in a year. In 60 days, the educator-only saw my son a total of 5 times when he was supposed to see him 6 times a week. Unbelievable!

We never found a speech therapist available. We did have a lady did come to our house to give my son occupational therapy. However, she only sat on the floor, barely moved, and called him buddy the whole time—which was not my son’s name.

My husband and I aren’t experts in the best practices for developmental delays. But we knew that this lack of professionalism from a state funded program didn’t seem right.

Frustrated, we decided to contact The Center for Autism and the Developing Brain (CADB). They work with children on the spectrum and evaluate children as young as 18 months. At 20 months old, my son was diagnosed with autism. We had the answer that we had been seeking and it broke our hearts. What I had envisioned for his future quickly changed into what little I had known about children on the spectrum. To speak honestly, it was the dark world of a child with a label. This is where we knew that he had to get the best therapy possible in order to give him a fair shot in the world.

The Center for Autism and the Developing Brain did work with Early Intervention but had no slot for him until the upcoming weeks. However, we were now able to get Applied Behavioral Analysis (ABA) therapy from the state at no cost. Not knowing anything about behavioral therapy, we trusted that maybe Early Intervention would be able to provide a therapist to meet his needs now that he had a diagnosis.

Again, we were provided with ABA therapists that would cancel, show up late, or not do much when they got to the house. At this point my son still wasn’t speaking and my husband and I were desperate for a speech therapist, which after 90 days in the system, he still wasn’t appointed one.

Luckily, he began a toddler development group at CADB where he was given speech therapy. While there, I discovered that there were private speech therapists that worked with prompting children with speech delays. We looked into it and shortly began paying for private speech therapy sessions.

Weeks later, my son’s ABA therapists still weren’t showing up on time, calling last minute, and doing nothing when they were at the house. Through speech therapy we found a private pediatric group of therapists that provided ABA therapy, Speech therapy and OT in Greenwich called The Waverly Group.

We began paying out of pocket for private therapy and eliminated what had been provided by Early Intervention. We came to this choice because we could no longer count on the state-funded program where the employees were unreliable. Which is a shame because parent’s rely on the knowledge of the therapists to help them shape their children’s future. We read somewhere that children with autism can thrive if given the proper therapy. Unfortunately, that therapy isn’t cheap. Most families will spend over $70,000 a year for private services.

Today, at 4 1/2 years old, my son is the strongest person I know. He has 12 hour days and I drive him 300 miles a week to and from school, therapy, and speech. He attends a regular nursery school with his BCBA. He is the brightest light in the room. He is loving, tender, and sweet. Although he still struggles with speech, he will say “I love you mama” in the most tender voice.

Our decision to start Magnify Autism was to financially help families with children on the spectrum. We are fortunate to be able to do this for our child, it is our dream to help other children as well.