Autism

No one expects to be an autism mom. Heck, I was worried enough about just being a mom. It is a challenging road to say the least. We love and care for our kiddos and want them to be as healthy and happy as possible. And while I would give anything to undo the suffering that happened to my child, I’m trying my best to learn a lot from the situation and to share what I’ve learned with others.

Christopher was born completely perfect – he developed normally and met all milestones at or ahead of schedule. At 14 months, he lost a lot of skills (talking, pointing, clapping), he stopped being a great eater, and he stopped napping and sleeping through the night. A rash gradually spread across his body and lasted for months. The worst part was, he was no longer his chirpy happy self. He was fussy and irritable and nothing seemed to cheer him up or soothe him. He used to be so social and aware of everyone around him – trying hard to make other people laugh by doing cute things or comforting the crying babies daycare. He no longer seemed to even notice anyone around him, let alone care about what was going on with them. I had no idea what was happening to my child. I was also 6 months pregnant with my second child and completely exhausted. When Christopher was 18 months old, he failed his M-CHAT and we were given a list of tests to get and specialists to see. At this point I also had a one month old baby who was the fussiest colicky thing ever. Even though he nursed beautifully after he was born, he was unable to do so later that same day and it never got better. My life revolved around feeding him. It would take almost 3 hours for him to get a full feeding in, with him vomiting on me multiple times in between until we both fell asleep exhausted and it started all over. Every once in awhile (usually after a huge burp), he would smile and I would think, “You’re a good guy – you just hurt so bad for some reason and I wish I could help you feel better.” During this time, Christopher was getting worse – he had terrible diarrhea throughout the day, peppered with tantrums or random inconsolable screaming. This was one of the worst times of my life. I was so tired I could barely function, my children were miserable – disintegrating before my eyes and I couldn’t help them, and I felt like a failure as a mother. I remember thinking that there was no way I could go on, and wondered how other parents did it. Surely this couldn’t be what normal parenthood was supposed to be like?

This whole time, I was researching, trying to find answers for what was happening to my boys and how to help them. After a few months, it dawned on my that Christopher had autism and how he got it. I delved into autism research in autism resources, recovery blogs, support groups, medical research, alternative treatments – anything and everything that could possibly help. We started a gluten-free casein-free diet, supplements and probiotics, and various therapies. When Christopher was two he was officially diagnosed with severe autism. We were told that early intervention and ABA (which we were getting) would be helpful, but there wasn’t much else we could do. I was already immersed in stories of autism treatment and recovery. My husband and I figured we didn’t have anything to lose by trying to get our beautiful baby boy back and if we didn’t try, well, then we certainly wouldn’t be able to right?

6+ years later, Christopher still has a long way to go. But, he is much healthier and happier than at the time of his initial diagnosis. He is thriving in his school, starting to say a few words, and he is by far the best eater in our house. We will NEVER give up trying to heal Christopher and be the person he was meant to be.

So, that’s a brief version of our story. When I started the autism journey I knew NOTHING about how to advocate for Christopher, what services he was entitled to under FAPE (I didn’t even know what FAPE was, and it’s a free and appropriate public education in the least restrictive environment if you didn’t know either). I knew NOTHING about how to help him medically. I knew NOTHING about how to navigate the complex ever-changing insurance system. Part of the reason I started this website is to share what I have learned with other parents. When you first get an autism diagnosis, you have no idea where to start and it is impossible not to feel overwhelmed, scared, and confused.

Autism is also very lonely. It is so much easier to isolate yourself than to listen to other parents’ stories of normal childhood antics while you wonder what happened to your child, if you’ll ever be able to take him out in public without a massive meltdown or worse, or if you’ll ever hear her say “I love you.” My saving grace has been the other amazing autism parents I’ve met on this journey. I honestly don’t know where I would be without their guidance, knowledge, love, support, and friendship.

So, I invite you to share this journey with me. I promise to be honest, sometimes brutally so, and include the good, the bad, and the ugly (I might even share the Great Shit Event of 2013 at some point *UPDATE-here it is*) – because parents who are in this need to know that they are not alone. There is always someone there who has been in your shoes, there is always something new to try, and there is always HOPE. Never give up or stop BELIEVING in your child!

Thank you for being a part of our crazy autism world. I hope that you can find some comfort, camaraderie, and even a few chuckles at HolisticallyWhole.com (see some of our recent adventures below). Wishing you hope and joy.
XO Joanna