Ever feel like something is off, but you just can’t quite put your finger on it? That’s how we felt about our son starting around 15 months of age. Overall, he had a fairly laid back first year of life with the exception of a 10 day stay in the NICU at birth and a few minor procedures. On his 1st birthday, I was happy to report to our pediatrician that everything seemed on track and he was talking with ten or so words under his belt. Then, what seemed like overnight something in his brain appeared to shut down in the verbal and social world. It was as if he were in a trance more often than not; his thumb in his mouth and no words coming out.
Expectantly, our pediatrician recommended that we receive a speech evaluation as well as a hearing test. The results simply stated that he needed therapy, but they didn’t explain why. I had heard of many kids in need of speech therapy due to mispronouncing words and letters. I felt alone in the world, and of simply shutting down and not talking.
At 22 months of age, with the birth our second son, he started to come out of his shell a bit. My husband brought him to the hospital to meet his baby brother and he leaned over the baby bed and said, “baby!” As you can imagine, my heart busted into a million little pieces!
He continued with speech therapy and was slowly expanding his vocabulary. However, it was his behavior that became the bigger concern. His tantrums were lasting 45 minutes to an hour. Nothing soothed him and at times, I feared for his safety from himself. Yes, 2-3-year-olds have tantrums, but the concern came from the reasons for the tantrums and their duration, as well as the frequency. He was displaying other unusual body behaviors such as: twisting his wrist when he was excited or nervous, running back and forth as if he was pacing, spinning toys in such way that not even we could duplicate and showed little to no eye contact during one-on-one communication.
In conjunction with speech, he started down the occupational therapy road where the process to see where he fit in the diagnosis world began. I was hesitant about the full evaluation process. Coming from the Early Childhood Education world, I knew that once you were “labeled” it was hard to break free from the bubble they believed you belonged in. Ultimately, he was diagnosed with Sensory Processing Disorder. In my opinion, even to this day, with as broad and somewhat vague as this spectrum is, we could all fall somewhere within it. The research is overwhelming and simply just trying to explain it to someone makes me want to crawl into a hole. Naturally, that is exactly what I did. I continued to try and help our little love of course, but mostly I just kept giving him time. I was tired. He was tired. It felt like we were at therapy and doctor appointments more than we were home. We, as a family, made the decision to take a break and allow him to simply grow.
Last August, after a VERY long back and forth decision process of whether or not to send our buddy to Kindergarten on schedule, we decided to go ahead and give it a go. He went to the public school in a mainstream classroom and day by day he was shutting down. He was overwhelmed and highly frustrated. I was heartbroken. It wasn’t supposed to be like this, was it? You turn five and you start school. You get on the bus, you make friends, and you build memories. For our little boy, it wasn’t so easy. Little things brought him down: a change in the schedule, the color behavior chart drove his anxiety through the roof, and focusing, forget it. His attention was nowhere to be found. After three weeks we pulled him out. I instantly saw this sense of relief fall over him; however, I felt lost. What should we do next? Where will he go to school? Which type of therapy should we try? Where can I take him and actually find some answers? Every answer I was given in the past didn’t feel right and honestly, didn’t seem to help…enough.
We started sharing our story and one of our neighbors explained to us that they too, were walking a similar walk and they found hope in a program called Brain Balance. At Brain Balance, they focus on the under-developed areas of the brain that cause deficits in learning and behavior. They assess your child through a battery of tests to identify those areas that need strengthening, then tailor a program that exercises them. The end result is a balanced brain and permanent changes that don’t involve drugs.
With an incredibly thorough evaluation, the removal of gluten from his diet, and a deeper understanding of what was going on in his brain, or more importantly WHY, our Brain Balance journey began. His assessment showed that many of his delays stemmed from his primitive reflexes being underdeveloped. His brain in many areas was performing as a 2-3-year-old rather than a 5 ½-year-old. Without strengthening these primitive reflexes the rest of his brain could not perform to its greatest potential. The explanation seemed simple enough.
It was an intense schedule: three days a week an hour each time alongside home exercises three times a day. On top of time consuming, it was a pretty penny costing us around $6,000. None of which was covered by insurance. Yikes!
As a family, we were all thrilled and excited about the opportunity! It was different from every other type of therapy we had done in the past. It was as if, as a team, we were finally going to get to the bottom of his challenges and truly start seeing our little man feel less frustrated and more understood.
Every 30 days we were given a full hour long conference discussing his progress as well as where he was still struggling. For me, this was huge! In the past, I didn’t have these concrete results with graphs showing us where they were seeing the changes and WHY!
At home, his confidence was rising and his frustration was lessening. We were actually able to reason with him! We were catching him attempt to make eye contact with us giving him an opportunity to focus long enough for us to explain how and why things were happening. He was expressing himself through words rather than through tantrums. After taking him out of the Kindergarten class last August, we placed him back with his teacher from the previous year and she was highly impressed with his social engagements among his peers.
Finally, if nothing else, we understand him on a deeper level and have learned how to help him in ways we never imagined were possible. There are days, of course, that are more challenging. Days where I feel a setback coming, but I take deep breaths and reminisce of how far we have come. I am absolutely hopeful that this growth will only continue to expand and he will continue to surprise us all.
With so many unknown behaviors and neurological diagnosis’s out there, we as moms must rally together and lift one another up. I am sharing a glimpse of our story with the hope of helping other moms share their stories and not feel unsure of what the next step may be for their little. Maybe you have found hope through similar forms of therapy such as speech, OT or Brain Balance? Neurological disabilities need to be shared just the same as physical disabilities with the hope that we as moms won’t be judged; that our children will be understood, and ultimately be given the same opportunities as their peers.
We as moms must find our voices and share! If I had not shared our journey with a neighbor, we may not have learned about the Brain Balance program until later on down the road and our little love may still be feeling just as frustrated and temperamental as he was eight months ago. There are so many resources available! I am confident that the more sharing and understanding that breaks through will only benefit those in need and those who simply cannot understand.
Remember, when you see a mom at the park losing the tantrum battle with her child, please pause and remind yourself that there very well may be an even deeper challenge going on. Be kind, don’t pass judgment and know that we are all here fighting the good fight and in our hearts doing the best we can. Man, is this parenting stuff hard or what?!