I understand that my child really had encephalopathy and mitochondrial dysfunction, but he is still officially diagnosed with autism, and I need that label to get treatment. So autism it is. Until it isn’t. A lot of us are like that. I like the idea on the website “STOP CALLING IT AUTISM,” but that is what doctors, schools, therapists and everyone else we encounter calls it. I’m not fighting that battle today — I have another calling — but I am glad there are people out there that are. It really should be called what it is.
At first I really hated autism. I was at war with it as a dead-end diagnosis. And by dead-end, I mean that the developmental pediatrician basically told me there was nothing I could do, nothing that would help his drooling, head-banging, and constipation, and to join a support group to “get through it.” What I have come to understand is that I do not hate autism. At all. And I definitely do not hate PEOPLE with autism. At all. What I do strongly dislike are doctors who do not have enough experience to know that there is a lot of hope out there and that children like mine can get better from symptoms often associated with autism. And do.
When I say my child will recover from autism, that is not a slight to anyone who identifies themselves as autistic. I wish that the neuro-diverse population would understand that if my son functioned in society as well as they (as a generalization) do I would be the happiest person on Earth. REALLY. I would do a Julie Andrews on a mountaintop. I embrace all his unique qualities. I celebrate what makes him special. He flat out amazes me each day – really. I love every single bit of him. I do not want to make him dull and normal in the worst sense of that word, BUT if I had not intervened I’m not sure he would even be alive at this point. He had seizures, severe malabsorption and nutritional deficiencies, and the two sides of his body did not work together – he couldn’t jump. He had severe reflux and vomited after every meal. Sometimes he vomited bile. I thought he was deaf – I tested three times. He never burned or tanned. The sun really bothered his eyes and, oddly, he sneezed in the sun too. He was severely constipated no many how many jars of prunes I fed him. He looked like a child on a hunger poster from a third-world country. But I fed him and fed him – he just couldn’t process any of it. His liver function was so low that every doctor was amazed he functioned at all. His head swelled up after his well-baby visit: He was in the less than third percentile for height and weight (he was a twin), but overnight, his head circumference went from the fifth percentile to the sixtieth. He banged his head over and over to get to sleep.
And that still haunts me. It has been years since he banged his head in pain, but a few months ago he was frustrated and banged his head on the wall. I literally had a PTSD episode. I could not breathe and had a hard time keeping it together at work that day. Every once in a while, that happens. It’s scary when it does. It bothers me how close to the surface those feelings still are.
When I tried the diet – the one that my pediatrician and the developmental pediatrician said not to try – my son turned to his name for the first time. And his severe reflux disappeared overnight. I knew then that I could get him back. And when I say “get him back” what I mean is this: I had a child that was in severe pain. His body did not function properly. He had a laundry list of medical issues. I knew then that I could treat those. As each medical problem resolved, he made great gains and a little bit more of him shined through. I do not want to squash what makes him, him. EVER. I love this child more than I can ever convey in words. He is love and light personified. Quite literally, I believe, an Angel on Earth. He is goodness and pureness defined. He is so much a part of me and he has taught me so many things: patience, appreciation, acceptance, awareness, perseverance, determination, and pure, blissful joy. To watch him finally say Mama at the age of four – there are few things that have ever come close to that beautiful, beautiful moment. Because of him, I have made the most amazing friends who share similar experience. I have become a better person. A much better person.
I do not want to “cure” my child of autism. I do, however, want to continue to solve the medical issues he has. So far we have solved for seizures, malabsorbtion, liver function, constipation, elevated nagalese and viral issues. We have healed his gut. He no longer bangs his head or lies over the arm of a chair to give his stomach some relief. He has better oral tone, and he no longer drools. He has great eye contact and is cuddly and loving. He plays with his sister and brother. He is really smart, and at five he is reading and knows all the things he needs to know in kindergarten.
But we are not finished yet. His most pressing issue now is apraxia. He is at or above age level receptively, but expressively he is nowhere near where he could be. Where he will be. He can sign to communicate, but I know he wants more. He communicates with me in many other ways, and I know with every fiber of my being that he wants to experience speech. At least one person a week calls to tell me that they dreamed of my son, and he was talking in the dream. I don’t think it is accidental that this happens so consistently. He is starting to say many more words and a few two to three-word sentences. I am so glad I never accepted the “fact” that he might not ever speak. I cannot wait to sit in his audience a few years from now as he acts in a play or reads an award-winning story he wrote to the crowd. I will continue to be the believer, because he needs to know that we fully expect him to gain his voice. Every day I tell him that I am so happy with all he has accomplished, that I love how much he is talking to me. When he comes home from school, he breaks out in a huge smile and literally runs to me and flings his arms around me, hugging me tight. He knows, and I know, how much we love and support each other.
I have never treated my child as a science experiment, and I have logged thousands of hours in research. I do not believe you need an MD after your name to understand how to read a scientific study. I never take a new intervention lightly. I am not reckless, as I understand that what I do will impact my child, either positively or negatively, and I engage and employ specialists to help us. I cannot stress that enough. I know that some treatments carry a degree of risk, and I would never forgive myself if I caused my child harm. I will not, however, allow fear to condone inaction. I do assess, reassess and evaluate before, during, and after each intervention we try, and often that leads me to what we will try next.
I don’t understand when mothers like me are accused of not loving, or wanting, or accepting their child. All I have seen in this community, for as long as I have been a part of it, is moms just like me who love fiercely, who sacrifice anything and everything to help their child reach their full potential. I want to state for the record that I do not judge you if you feel differently. If your child is not in pain, your experience is definitely different from mine, and I respect your position. But I ask that you respect mine. I think about that old poem that everyone forwards you after diagnosis. I love Holland; I’ve learned and grown there, but I also love wine and pasta, and we WILL be stopping in Tuscany soon. Spaghetti is my son’s favorite food; it’s only right he get to taste the Italian version of it.
Most of all, no matter where we end up on this journey, I will always do my best by him. I will guide him and help shape him as he navigates this life. I will love him and learn along with him, and I will support him in every way a parent should. As he grows older and expresses more, I will respect his opinions, and we will make decisions together until he enters adulthood. I will not leave this community, even when we no longer qualify, and I will always be a Thinking Mom. I will make a difference on a global basis and give back to the community that took me in and gave me hope in ways that will continue to evolve.
My hope, in writing this, is to help build a bridge within our fractured community. We are all in this together. If your autism is different than ours, that’s okay with me . . . not that you need it to be. But I support you. I do not reject you in any way, and, if my son grows up independent and able to advocate for himself, well, I’ll be happy as can be. If your autism is like our experience, I will tell you what we did and who we worked with to help you bring your child out of pain. Because no child should have to endure what my son endured . . . and not another will if I have anything to say about it.
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