Today Max spun something and it reminded me how this all began. He used to spin everything. From rings to dog bowls. I remember googling “spins stuff”, “no babbling”, “no pointing”….and wouldn’t you know it brought up autism. Really??? Could it be?? I spent the rest of that day googling autism. He was pretty young, maybe a year old? Is it to be that my sweet, perfect son has autism? Or has something…whatever it could be that would mean he was different?
Truth be told I had no idea what would unfold in the coming years. I know I didn’t think it would be cool to be a special needs mom. You don’t hope for “issues” or looks of pity, disapproval, judgement or assumptions. It can be all of those things but you won’t know until well into the journey just how lucky you are to be a mom to a special needs child. As it became clear that yes, Max would have some significant challenges, I fell apart. I did. I wasn’t this amazing person who was strong and ready to deal from day one. (That happened on day 2) I didn’t know what it meant. I had no answers. I knew something was up and it would be a long, long time to search, research, wonder, question, cry, crumble and start all over again and again before there were answers. I remember being really sad at first, then every time we did the whole rundown questionnaire with some new professional in his life. Around a year old–No-he doesn’t talk. Walking? Uh no. How’s his diet?? Ummm you mean the baby food he still won’t take after 6 months of trying? He likes formula and cereal bottles though. Yeah I have read about the whole demise of the universe if you put cereal in bottles. It works for us though and he keeps growing! It even makes him sleep longer than 20 minutes at night! Back then I couldn’t see a day when we would be done with bottles and be able to serve our son whole real food. (like wieners and honeycombs! ;-)) But it came. Every single tiny step is a major one. I soon forgot about charts and “normals” and comparisons. I embraced the fact that he is here exactly perfectly in this special package exactly purposefully for his own path. His own purpose. Max is the kind of child who reminds you every single day about the true meaning of life. His challenges give him the ability to block out the bologna. He has this way of settling any stress and reminding me to just breathe. He is indeed a true gift. I always knew that part 🙂 So here we are.
Oddly enough I would get my first real step towards the truth by taking Max to my chiropractor to have his neck checked. She’s this amazing woman who truly cares about the people she sees and goes the extra mile. Our family doctor had told us Max maybe had a tight neck muscle and later I learned he had also written Max up as “FLK” in his chart. I suggest you google that as I did and prepare to puke in your mouth a little at the slap in the face that would be for an adoring, unaware mommy of her perfectly beautiful child!! Pfft anyway one thing led to another and she ended up referring us to a pediatric neurologist. A clean MRI besides some decreased grey matter which was normal to have with a child who has some delays. Max was delayed with eating solids, crawling, walking and babbling. So yup that’s all the big ones -we were told Max was Globally Delayed. What does that mean??? Well it means he is delayed in every way basically and that now you can wait and see what will happen in the future. Of course you won’t just wait though, you will call everyone you can to help your son! We had Max seeing an SLP an OT and a PT! He was very busy 🙂 At one of his doctor checks I brought up a few of the quirks I was seeing and we were then referred to the Autism program. Where we lived you didn’t need a diagnosis to be screened in. Our worker would start one of the most life altering things with our son. PECS! (Picture Exchange Communication System) I will never forget the day I was standing at the stove when I felt this little laminated picture card flick against my leg. My son asked me for bubbles!!!! He still uses pecs but prefers his iPad and Proloquo2Go to communicate when needed. Around home we have him pretty much figured out but of course I hope one day he will learn to type and tell me all the stuff we miss!! As he gets older I can see there being more he wishes he could say. It IS somewhat limiting as his only ~kinda like a word~ is “GUH”. He uses that for everything…it can mean GO or STOP or FASTER or SLOWER or COME PLAY or GET ME ANOTHER WEINER…and so on and so forth. Then there’s his eyes, he was born with the most amazing big blue eyes that can melt a heart in .1 seconds. They are also pro at saying things like “I love you mommy” or “you’re hilarious daddy” or “I’m about to piss off my sister”.
So we knew he was completely delayed….but I knew there was more. The pediatric neurologist referred us to a geneticist who took one look at Max and knew he had this rare genetic disorder called Aarskog Syndrome. So I googled that too. It comes from me..making me pretty cool too. I’m talking webbing and widows peak kinda cool..and no I’m not going to post a picture of my webbed fingers…it’s not THAT obvious..I don’t think? heheh So apparently it doesn’t show up as much in girls as it does in boys. Did you know 50% of kids with Aarskog Syndrome show signs of autism as well? Why would you know that? Nobody has even heard of Aarskog Syndrome 🙂 Well I knew Max was one of those 50% and likely me too hahah. Sure Aarskog explained stuff like his short neck and undescended testicles and his super long lashes that grew up into his big blue eyes and maybe even some delays…but what about the other stuff?? We would eventually have a diagnosis for Max of both Aarskog Syndrome and Autism. YAY! Well …really…I mean what could be a better combo than something you NEVER heard of and something you hear about all the time? It’s like that time my husband made cheesecake and added chilli pepper…who would DO that to my delicious chocolate cheesecake??? But it just works and it’s amazing and something you never would dream of or hope for becomes your most favourite thing. Just like my son. A perfect recipe.