Our journey began early, when Maci was 3 months old. I knew something was not right. It started with her constipation. Then came the poor eating, constant wiggling, agitation and restless sleeping. Our pediatrician gave me recommendations to help, but nothing worked and my intuition told me this was not good.
Ironically, Maci was making good progress and meeting her developmental milestones. So I continued to do the normal every day things moms do with their little ones. I heard from other moms about a local mom and tot group. Feeling compelled, I signed us up for the group. I shutter now thinking back on the whole experience. All the other moms sat with their 12 month old toddlers around in a circle singing and dancing, learning all the fun songs. I sat in the circle by myself while Maci stood and stared out the window. Never wanting to participate or engage with the other little kids. I felt silly sitting alone, embarrassed and sad! I tried each time to get her to play and engage with the others. I finally just gave up and took her out of the group. It was awful and frustrating.
Dave and I started to get more concerned and frightened about our baby’s health and development. Our pediatrician joined our concern giving her a diagnosis of Failure to Thrive because she was not growing, gaining weight or developing. She qualified for speech, occupational and physical therapy with an early intervention program. At the same time, we initiated our journey with our local children’s hospital to try and find out the reasons why she was having these problems and falling behind developmentally.
I became increasingly frustrated with the lack of answers. I started searching for information on my own. Looking for anything I could find that might help us to understand why our little girl was failing to thrive. I was on a mission!
I spent many hours on the phone and in person meetings with different professionals and friends with similar situations with their child. On the internet researching what I could find and taking Maci to evaluations to get opinions. I felt there had to be an explanation and treatment plan on what we needed to do to fix this situation.
The best diagnosis that seemed to fit at this time for Maci was PDD-NOS, Apraxia and Dyspraxia (a neurological and motor planning disorder). I had no idea what this really meant for us or what to do. Again, I kept on my mission to find answers, information, support and resources. It was exhausting, time consuming and very frustrating. I felt at times we would find some medicines or treatments that seemed to work for a period of time but then Maci would start to revert or plateau with her development. I would get back on my mission trying to find more information.
Time was quickly passing us by, Maci was now 5 and her situation had not improved. Things were spiraling downward for all of us. We decided to get her evaluated specifically for Autism to help us get better services for her. I was not overly surprised when the results came back confirming a diagnosis of Autism. I think I knew deep down this would be her diagnosis but I mourned the child I felt I had lost. My hopes and dreams for her seemed to be gone. Would she ever be able to talk and converse, have friends, be potty trained, write her name, ride a bike or sing a song? Determined to support and help Maci reach her best, Dave and I worked hard to build a team of doctors and therapists to help Maci.
We gathered together a wonderful team of professionals and I started to feel for the first time we were moving in the right direction. As luck would have it, Dave’s job transferred us to a new state. It was a devastating blow. Maci was happy and doing well. I had begun to enjoy time and consider doing something for myself. But it was not meant to be, instead, I started all over again trying to find doctors, therapists and resources for Maci in a new city and state where we knew no one.
I got back on my mission. After 1 year from moving to our new home, I met an amazing doctor through a dear friend. I was elated when I found out she is one of the leading pediatricians in the field of Autism. She changed her practice 35 years ago to focus on Autism when her son was diagnosed. Along with her practice, she started an autism school, written a book and conducts conferences across the country. Dedicated to educate and transform the lives of parents and children with Autism. I felt a huge sense of relief and hope.
After her evaluation of Maci, she instantly gave me the contact information for all the people she wanted us to use for Maci. We immediately had an incredible new team of highly sought after therapists and treatments to help us. It gave us new direction, ambition and promise for Maci.
At last, Maci’s dream team!
The information and the experience given to me over the last 9 years since Maci was just 3 months is abundant. I continue to pour my heart into learning all I can about helping her to become a self confident and independent person. I am grateful to have the opportunity to work on a daily basis with some of the most well educated and highly sought after therapists and doctors.
MAP was created based on my longing and wish to find one source with answers, information and resources when I needed it. A website for support, encouragement and hope in tackling the daily challenges of Autism Spectrum Disorder (ASD). No one ever said life would be easy but maybe a really good website can help.
I hope my experiences will help you find your dream team.