We are one of “those” parents. The ones who were told that our two year old was just fine and would catch up on milestones on his own time, only to be confused and worried when things didn’t change. “Oh, he’s fine! Some kids just start talking in full sentences.” That might have been the last time I trusted a pediatrician. It wasn’t until the tail end of four that Calum was fully diagnosed with Autism Spectrum Disorder, and the lack in blogging has been entirely due to the upheaval that kindergarten has caused. For all you parents who have been through a struggling transition to school, I pat you on the back. You probably handled it better than I. The heartbreak and experience, as a mother, has lead me to face my denial, unrealistic expectations, and realize that health and cognitive function are not two sides of a coin but rather a complex relationship…like a marriage with a lot of baggage.
The problem with the early years of an autistic child’s life is that you have no clue how he or she will progress (or regress). Because of the vastness of the spectrum, you can’t take your child and compare them to someone else for wisdom. Many of us can feel helpless through this, especially when things get challenging. Having no prior experience or base of knowledge on the subject, I was confident that, through diet, chiropractic, and nutrition, he would get better…almost to the point where he didn’t have autism. A relatively quick fix if you will. Someone should have hit me over the head with a reality stick. Things don’t always go according to plan. Calum started Kindergarten and I thought he would slowly adjust, progressing fairly well with his extra therapy offered through the school. When this didn’t happen, I fell apart.
Calum spent his entire first day silent. The next week was okay but my sweet son started lashing out, first verbally and then physically to classmates and teachers. I was picking him up from school so often that I panicked every time my phone rang. I took him to the library one day where he refused to leave. I gave him warnings, grabbed my struggling one year old, whining three year old and told him and his older brother that we had to go. I took his hand to lead him out and he was physically pulling away from me, screaming the most heartbreaking words, repetitively out of the door. “I don’t want you, NO!” “I don’t want you.” Everyone, including the kind librarian I often talked to, looked at me like I was a terrible, inept parent. I know he had lost control of himself, and those people didn’t understand Calum’s diagnosis, but I bawled all the way home. This attitude he had seemed to continue and I saw the awareness in his eyes diminish the longer he went to school. I cried in the car, I cried at home, and I cried away from my kids, pleading with God in the woods of my property. My son had lost control and he was regressing at an alarming rate, and there was nothing I thought I could do.
The school Principal, Vice Principal, teacher and therapists met with the unavoidably crying version of myself to discuss options. Within a month, Calum was moved to an Intensive Intervention Class in a neighboring town. Where I was previously crying in despair, I was now crying with joy. It is night and day, the difference with Calum. With my level headedness restored, I was able to reflect on what I had experienced. Why was I so emotional through the process? I discovered it was because I expected him to adapt like a “neuro-typical” child. I had not processed that he had different needs before we started school, or that it would take some challenges to find the right fit. I didn’t accept the term “special needs” when it came to my son, like it somehow defined him in a negative way. That was a huge disservice to him on my part. He isn’t less, just different. When I was pleading with God on one of those dark days, I found these words, I can’t make Calum into someone God doesn’t want him to be. I was trying to “fix” the situation and make him typical, completely taking away who he is. It took some breaking down to teach me that very important lesson. But where, in my efforts to help him, do I go from here?
I had to first deal with my personal guilt. I trusted the health route so strongly that I felt like I was failing my son. The GAPS diet wasn’t performing the miracles I expected and his eczema was just getting worse. It was a daily grind of making sure he was getting the right, time consumingly prepared, foods and vitamins. So it had to be my fault he wasn’t cured by now. Again, I definitely had to work through some stuff. First, I needed to accept that Calum’s brain was impaired early on, and then I needed to realize that a healing diet does not heal the body and the brain equally. One takes longer than the other and has limitations. Like a marriage where one spouse was abused, unconditional love does not immediately heal the impact of the other spouse’s experience. But healing can not come without the unconditional love, though the scars remain. What I was doing was definitely working, I just had to adjust my expectations on how he would heal.
Before the 1950’s, our understanding of the brain was that it was rigid and unable to change. Now, neuroscientists are trying to define the complex capabilities our brains have in adapting and changing. For example, physical activity increases the brain’s executive function and can be used as therapy for cognitive disorders. (C8 Sciences, http://www.c8sciences.com/about/neuroscience/) Also, by improving the gut lining with diet we reduce its permeability, lowering inflammation, and allow beneficial bacteria to proliferate, strengthening the gut-brain axis which affects mood and anxiety. Autism is not an unchanging, static condition. One of the most common motto’s among parents with kids on the spectrum is that it is a lifelong condition. I think that this is misleading in that yes, Autism will always be a part of your child’s experience, but the decisions we make in the treatment we administer have the capability of directly improving or hurting our children. So just because he or she is on the spectrum, don’t give up and allow them to eat a diet consisting of only fries and nuggets. Their health is in our hands.
I needed to be reminded that three years ago Calum was using screeching as communication, moved from place to place on his knees, woke up screaming every night, had frequent diarrhea, and other symptoms of Autism. Because of diet and chiropractic, he can use practiced sentences (occasionally organic), has no stimming, few mood swings, he sleeps through the night, and he no longer has gastro-intestinal distress (less leaky gut). This leads me to believe that we can manage the symptoms of ASD. He still has some inflammation issues with eczema, which I believe is caused by a food allergy. In fact, there is an alarming amount of kids with ASD who have food allergies; furthering the idea that symptoms could be triggered by food. Through this process, seeing how Calum compares to other school children his age and the difficulties he faces, I have better focus on who he really is, where we’ve come from, and what he now needs.
What we house in our bodies are integrated, complex, and sensitive systems that are as individually different as snowflakes. What one child on the spectrum needs is completely different than another. What nobody needs is the idea that there is nothing we can do to improve the life of an ASD child. Our job as parents to address all of these needs is so difficult that it can be overwhelming. Please find support, never stop researching, and never give up the hope that things can get better.