The Fox Man's World

President Theodore Roosevelt once said, “Comparison is the thief of joy”. I whole heartedly agree, and yet, I still find myself doing just that. We’re told over and over again throughout life not to compare our lives to someone else’s. The grass isn’t always greener on the other side. As parents, we’re told not to compare our children to other children, because each child is different and will have different skills, hair color, growth, height, weight, etc.; however, when you have a child with a developmental delay (or several), comparing is all you do, sometimes even subconsciously. At least, at first. And since that’s where I am, that’s what I’m going to talk about today: the good and bad of comparison with a son with autism spectrum disorder.

I see friends posting amazing videos, pictures, updates about their children and their milestones: One has learned how to wave, one has learned how to walk, one is clapping excitedly, playing along with their siblings, one has learned how to say Mama and who Mama is, one blows kisses, mimicking the adults blowing kisses, and on and on the developmental milestones go. These children I mention are all currently under one year of age. My son, at 18 months does not wave. He never has. My son does not clap. He never has. My son does not blow kisses. Again, he never has. My son doesn’t point. That was one of our first red flags. He can say Mum and Mama, but it is not ever intentionally directed at me as his Mother nor does he use it to call my attention to something (I cannot express to you how much that one physically hurts at times).  Really think about those things for a moment: waving, clapping, blowing kisses, pointing. Now imagine not doing any of those things at all. What would that look like for you? How would you feel if your child weren’t doing those seemingly basic forms of communication?

The thing about having a child newly diagnosed with autism spectrum disorder, is that you’re going through somewhat of a grieving process, though looser defined and subject to change, not really following a set pattern. You’ll go through super positive moments of acceptance and you’ll go through extreme lows of depression, sometimes on the same day. I try to be an extremely positive person most days but I admit that I’ve been in a low lately. I see these children doing these beautiful things that mean so much and show how much they’ve grown and show their understanding of the world around them, and I wonder, will Desmond ever do that? Does he know what that means when he sees a grown up or another child doing those things? Waving, clapping, blowing kisses, pointing…communicating. I question, does my son know how much I love him? Does he understand that my hugs and all the times that I try and steal a kiss from him, is me communicating that love to him and for him? I’d like to think that he does, right? He shows signs of being super clingy to me over his Dad at times. He will run up and give me a very quick hug when I pick him up at the end of the day from school. He will smile from ear to ear when I walk into the room after having been gone for a bit. He’ll get jealous when he sees another kid at school playing with me or showing me affection. I remind myself that his communications are not the same as the rest of the world, but that doesn’t stop the sadness from creeping in from time to time. See, comparison really is the thief of joy.

As such, I’m going to remind myself here and now of Desmond’s recent milestones in order to stop my natural instinct of comparing and instead start looking at all the positive things that have been happening lately. 3 weeks ago, Desmond was approached by a little boy in the park. This little one was probably a few months younger than Desmond. I was worried when the child got in Des’ personal space while he was fully engaged in his own playing. What was Desmond going to do? He’s never reacted violently or aggressively, but he usually will leave the area where other people are, and he’ll go into a corner by himself and rock and hum to himself, slowly calming his nervous system. This day though, Desmond reached out to touch this little boy’s face. In the moment, I was terrified when I saw Desmond’s arm outstretch and reach towards the little boy, “Oh crap, is Desmond going to push this kid away? Why is he reaching out towards him?” Instant relief overcame the fear and a sense of accomplishment quickly followed when I realized that all Desmond was doing, was saying hello. Granted, in his own way, but he was doing it! He was communicating! Very recently we received two very awesome notes from Desmond’s teachers: “Desmond has been all smiles today and it seemed as if he missed school and all of his friends! Desmond also loved interacting with his teachers and tried to engage us in his games which was adorable. The sweetest thing happened today as well; Des actually shared his toys and gave them willingly to his friends! It was spectacular to see” and “Desmond was great about communicating with his peers when he wanted to play peek a boo. He began to bend down and pop up and waited for his friends to mimic him”. Desmond willingly shared toys. Desmond engaged with his friends and teachers. In order to do those things, that means Desmond had to be aware of others. He had to want to communicate something or receive communication from others. It feels awkward to brag about these sorts of things, to feel that sense of accomplishment, but these are the milestones that are currently making us very proud parents. If I take a minor step back to January – Desmond wasn’t making eye contact, with ANYONE. Desmond wouldn’t respond to his name being called. Desmond wouldn’t want to be around other peers at all. He wouldn’t bring us toys or engage with us or anyone very much. All of the recent milestones I just gave are all thanks to our early intervention services from Kindering, Occupational Therapy, Special Education Therapy, Parent ABA Coaching from UW, and Desmond’s wonderful teachers at school, who opened their arms to Desmond’s therapists and engage with them weekly, constantly learning new ways to not only help Desmond, but to help all of their other students.

I’m going to take the opportunity to brag on Adam a little bit here too. That man NEVER GIVES UP trying to teach Desmond, to share therapy ideas with him, to try to push Desmond a little outside of his comfort zone for growth opportunities, and he never ever gives up on me, even when I’m at a low point. I think together, we’re a pretty unstoppable team. So when I’m feeling low, or starting to compare, I’m going to remind myself of Teddy Roosevelt’s quote, and this blog post. And remember to find joy in ALL of the little moments and accomplishments that we have every single day.

Merriam-Webster’s defines intuition as “1. a natural ability or power that makes it possible to know something without any proof or evidence: a feeling that guides a person to act a certain way without fully understanding why; 2. something that is known or understood without proof or evidence.”

I have often been told that my intuition is one of my greatest personal strengths. I know things before anyone else does and I can see patterns in behavior, environments, people, etc. that lead me to understanding something deeper than what is on the surface. Oftentimes I do this without any amount of effort, and information just comes to me. I don’t even realize I am putting together pieces of a puzzle until much later. I know, it sounds hooky or crazy, but it’s part of who I am. Even my personality type, INFJ, is extremely intuitive. My intuition on the Myers Briggs assessment is off the charts strong or “extremely definitive”. I hadn’t realized the power of my intuition or how strong it was, until becoming a Mother, having it knocking me over the head with “Something’s different about my baby”.

For me, I started noticing this gut feeling around the time Desmond Fox turned 9 months old. It started with little things, like him being extra fussy when his routine was disrupted, refusing to eat any solids or baby purees whatsoever, after having eaten them 3-4x a day – all varieties, meats, fruits, vegetables, etc. for the last 5 months, to now only eating from a bottle, and his obsession with anything that rolled (i.e. cars, whether real or toy, balls, cups even. At the time, I chalked it up to going through a developmental leap (ala the Wonder Weeks, if you’re familiar with that). Maybe he was regressing a bit due to going through a huge leap in his development, I’d tell myself, quieting the inner voice telling me that something was different.

By the time Desmond Fox turned one year old, I started really listening to that inner voice and watching, analyzing, and jotting down notes about things that seemed different for Desmond. I remember while my Mother was out in WA for his 1st birthday, we briefly touched on the subject and talked about it maybe being a possibility. She had seen and/or felt something was different too. Desmond’s obsession with things that rolled increased substantially at this time. This is actually one of my favorite strengths about him currently, and it continues to grow. He can look across a room and instantly zero in on something, even an ordinary every day item, like a candle for example, a cup, a spool of party ribbon, and know that it rolls without testing it. He will examine the exterior of the item like a scientist or engineer. And then he’ll get to work – rolling that item back and forth, around, sideways, wherever that item may take him. He’ll get down on its level and like a yogi, move, bend, and twist his body to follow the flow of the item that is rolling. It’s impressive to watch. During his 12^th month, he also regressed significantly in social and communication skills for his age. He stopped making eye contact, with really anyone. He would respond to his name maybe 1x out of 10x of calling it. At this point he still was refusing most solids but would always eat an Eggo waffle and Whipped Greek Yogurt, Vanilla Cupcake flavor. He didn’t want to play with any of the other babies in the infant room at school, except for his best buddy, who I’ll call “T”.

Around the age of 14 months, I reached out to Kindering to have Desmond evaluated for his food issues, more than anything. I really was worried about the fact that he went from eating normal tasting baby purees in an assortment of flavors, to now, eating nothing but waffles and yogurt. We were also still bottle feeding him around 36oz a day. I worried that as he went into the next room at school with the toddlers (wherein he was already delayed starting due to his picky eating), he would starve, because no way would he be able to go all day without eating. After that evaluation, we put together an IFSP (Individual Family Service Plan) for Desmond – 1x a week, one hour of educational therapy and 1x a week, one hour of occupational therapy. I’ll go into further detail about this evaluation and therapies in another post, but I first want to outline how we got to where we are today.

At 16 months, I brought up the possibility of autism with Desmond’s Educational Therapist and Occupational Therapist. Had they noticed anything? Do you think it’s possible? Is this something we should be looking at this early? They both agreed that they had discussed red flags that they had seen in their sessions with Desmond, and thought it best to give him the M-CHAT (Modified Checklist for Autism in Toddlers). Desmond scored a 14 out of 20 on the M-CHAT putting him in the “At high risk for Autism” category. As such, it was recommended that we get Desmond into an autism evaluation immediately. Again, something I’ll go into in more detail in a later post, as it was a process in and of itself.

This brings us nearly to where we are today. Right before Desmond turned 17 months, we started the nearly month long process at the University of Washington, CHDD (The Center on Human Development and Disability). There were 4 appts, 8 total hours of evaluation with us, Desmond, and a Psychologist, along with a team working with the Psychologist for his final diagnosis. On Wednesday, March 22^nd, 2017, Adam and I headed to UW to meet with the Psychologist on diagnosis and next steps. At 9:33am specifically, we received the diagnosis that I already intuitively knew we were going to get: Desmond Fox was diagnosed with Autism Spectrum Disorder (Severity 2).