Our growing community on Boomcast continues to amaze us with their stories of struggle, compassion, and overcoming odds. We have found that some of the most inspiring stories have a common theme: having a deep-rooted strength. Regardless of societal expectations, or their own limitations, a few of our brave users have chosen to share their stories with the community.
We are starting #TheStrengthWithin to showcase these stories, and the amazing people behind them. One of our users, Freckles, was the first to open up. Here is her story…
Our Journey with Autism
The ten words he used to speak he didn’t say anymore. I would prompt, my husband would prompt, and there would be a soul-wrenching lack of reply. Maybe he can’t hear us? Maybe we should get his ears checked? We were worried about our son. When we did check his ears, we were told his hearing was fine. The doctors said don’t worry, he will come along. But I started to worry about Gabe.
A new doctor saw my concern and suggested speech therapy. A year went by with very little progress. Now he was nearly three years old, making loud random noises and wanting to watch the same movie on repeat. He had few other interests than trains, and never looked me in the eye. My heart was breaking, and I was afraid what answers I would receive about him! I want to agree with everyone around me that he’s just taking his own time, but I was breaking down and so full of worry that I could no longer think of anything else. Why wouldn’t he take things out of his mouth? Why wouldn’t he speak? Why wouldn’t he look at me? Please look at me!
The doctor said it was time to consider that his “quirks” may be more. We were sent to a psychiatrist who finally told us that our son has PDD NOS-Pervasive Developmental Delay Not Otherwise Specified on the Autism Spectrum. I was shattered. There are no other words to describe the pain! I was shattered. All of my hopes for his future lay at my feet. I felt like all the dreams of seeing him get married one day, or watching him get a great job were no longer possibilities! I felt like my child’s future had been snatched away- I couldn’t breathe! I was drowning in the misery of my own expectations for his future and it just hurt.
I cried all the time- hours everyday- while my sweet boy climbed in my lap and tried to silently comfort me. He was unable to understand what was bothering me, but knew Mommy was hurt, so he held me. We had more tests, and were left with more questions unanswered. Then, we went to a new doctor and while she gave us the same diagnosis, she also gave us hope. She said to me:
“Let’s start treatment! You have an early diagnosis, and his chances of progress are phenomenal. No, there is no cure, but he can have a productive life in society. My son has your son’s same diagnosis, he’s driving a car and has a good job! Did you know Albert Einstein may have had a form of Autism? We also have a renowned brain surgeon here in Atlanta that is on the Autism spectrum.”
According to AutismSpeaks.org, the Centers for Disease Control and Prevention (CDC) released a new estimate in March of 2016 about autism prevalence among the USA’s children. The report showed that, overall, less than half of the children identified with autism (43 percent) have received comprehensive developmental evaluations by the age of 3. Unfortunately, this is despite the fact that the vast majority (87 percent) had developmental concerns noted in their medical or educational records before that age. In March of 2014, the CDC also released data on the prevalence of autism in the USA. This study identified 1 in 68 children, (1 in 41 boys, and 1 in 189 girls) as having Autism Spectrum Disorder (ASD).
Now, I was a woman on a mission. Now, I had power! There was now hope that my son would have an incredible future and the life that he deserves. We continued speech therapy and exercises everyday. From making faces in the mirror watching how his tongue moves, to playing games with ‘ma’, ‘da’, ‘pa’, ‘ha’ sounds. I also began talking all day long, naming everything I touched and saw. I even lost my voice on several occasions, becoming hoarse for days. On the days he made no sounds, I would cry into my pillow- screaming my pain into it as to not be heard and fearing no progress. Other days, there were small victories. When he would say “mi” and point at milk….that kind of joy cannot be put in words! I would jump and scream like a lottery winner. I would cry with joy and call everyone we knew with our monumental victories.
We started Occupational Therapy. There, you exercise different parts of the body to exercise different parts of the brain. All muscles are put to work with one goal; to make them all function together and to make the brain used to it. We exposed him to different textures and sensations that will trigger different parts of his brain to ‘recognise’ his body’s responses, to feel. We would swing and fall on purpose into mats and pillows, do massages and brush therapy. We became play-doh-ball-making, bead-stringing, dry-rice-with-hidden-objects people!
Over the years, this became my goal. I fall into bed each night exhausted from all of our activities. However even with a full day, he doesn’t sleep through the night. He wakes two or three times, and always has. I wake with him every single time because his night terrors are something I can’t stand to think of him suffering through alone.
One of the many other symptoms of Autism is not feeling pain the same way we do. His decreased sensory ability becomes the most evident when he gets sick. There was a period of time when he kept throwing up and overheating while running. When we took him to the doctor and found out he has asthma! He didn’t feel the tightness like we would; so I live in a constant state of terror! I never let him leave my sight.
His never leaving my sight began to show me other quirks of his condition I had never noticed before. Everything he does is in straight lines, and I do mean everything. He likes to look at the underside of things to see how they are made. He doesn’t roll any of his cars or trains, he sits instead and spins their wheels watching how they work. He likes comfort, and will sit in positions that put pressure on his shoulders.
Gabe’s speech therapist recommended that since he could not speak to me, I should start learning sign language. I learned it as fast as I could, and I encouraged my family to do the same. I continued to speak all the time, but I also now had signs to go with it too. When he would mimic me in either form I’d scream and dance! He loved watching me be “crazy” and it encouraged him to do more. We started seeing differences in his speech with various occupational therapies working for him and things took off! We started him in a special needs pre-preschool at three and half years old and he began to thrive.
During this time, I experienced such mixed emotions! I felt hope and joy, yes, but also guilt. I went to bed every night thinking why didn’t I do more? Why didn’t I take advantage of that time and do more speech exercises instead of stopping to read an article or do something for myself? I begin fighting with my husband because I didn’t feel like he was taking everything as serious as I was and it hurt me. I got angry at him for not learning sign language as fast as I was and not helping me with the occupational therapy exercises. I felt inadequacy more and more until I could hardly stand it, and my marriage was a mess. Then, I met an angel. Having been through a similar experience, she said that the reason her marriage didn’t work when she found out her son would forever need help, was because she hadn’t given her husband the chance. She wanted him to be like her and not parent like he was meant to. We all are supposed to give different things and knowledge to our kids, and when we feel like we are the only ones who are doing this right, then we are cheating the other parent out of their chance.
Gabe’s growth began slowly. When he first said “Mama” to me, he was four. I cried for hours, no exaggeration. I’m crying now remembering it! He said “I love you” when he was four and half. I screamed with joy! He was able to jump with both feet off the ground when he was five, something he absolutely could not get his brain to let him do before. At six, he started speaking. We began to notice that his words would change in sound even though they were the same words. What would come out correctly as “cat”, the first time, would then come out as “fah”, the second time around. We learned he had a speech impediment called Oral Apraxia that he would likely suffer from permanently. Then, he graduated from Occupational therapy and there was so much relief, it is hard to put into words. Driving to therapy three times a week had been taking it’s toll on us financially, and was stretching our ability to do anything else to the point of impossible.
Bullying began for him at age seven. They teased him about his speech and they took advantage of his naive thinking. The adults at school did not do a good job watching out for him and I became angry with my helplessness. I was so frustrated with my inability to be there to prevent him from being hurt. He began Tae Kwon Do, offering him a sense of strength. Even to this day though, he is still uncomfortable around many of his bullies. The worst part about all of it for me, was that he couldn’t always tell me! He couldn’t always get the story into the right sequence to be able to get it out. My heart was being torn right along with his!
Which brings us to today. Now eight, Gabe has a higher reading level than all of his peers in first grade. After having to repeat kindergarten (he just wasn’t ready to move on), he has flown! He is a genius in math, reading, mazes, mechanics and story telling. He constantly amazes me with his legos and the stories he writes. The pride I feel in how far he’s come cannot be described!
Looking back on that day I had felt so much grief, it was a heavy mile marker, but also one I needed to experience to help my son. With every mile I have grown in strength, and excelled through my pain. I have helped him progress with every agonizing step. I have become a person others in the Autism community seek help from- and I can help! I can share my experiences and I can reassure others that if you don’t give up, if you really dig in and work, they can do it. Children with autism will succeed and will exceed your expectations. More than anything, they will amazingly inspire all who are around them. Gabe has been through so much; we all have as a family. The relationship between my husband and I has been tested, but it has only affirmed as soulmates. We are all stronger because of Gabe.
Puzzle pieces are the perfect symbol for Autism awareness. Always beautiful, but often a little challenging to figure out in the process. The pieces can be hard to find sometimes. What I do know however, is that if we keep working together and trying, Gabe, and others like him, are going to make some amazing pictures
…Freckles:)
