Category: Fox Man’s Mum

Soundtrack for the post as you read, if you are so inclined:

• Sia – Elastic Hearat
• Moby – Natural Blues
• Jason Mraz – Living in the Moment in honor of Amber

I will start off this post super transparent and honest: Life has been shit lately. There have been great moments in between all the not so fun moments, yes, and that is what keeps me going; overall though, life has been shit. That is hard for me to admit, openly and in this space. I am not a negative person nor do I like to focus on the negative, but lately, that is all that has been thrown our way (which if you are like me, makes it harder and harder and harder to stay positive). I firmly believe that in order to get through that, we have to acknowledge it. If we don’t acknowledge it, it will just continue to fester under the surface. I am also keeping in mind the great advice that my dear friend Adam Hayden gave me when starting this blog and that is “to keep telling the truth”. So here’s my truth as of late.

We, along with the hardworking, caring, persistent staff at the University of Washington, and my Employer, have been fighting our insurance for the last month to get them to admit that yes, we do indeed have ABA Therapy coverage (we’ve had it covered since January as luck would have it) and yes, we are approved to start ABA Therapy for Desmond 2 hours a day, 5 days a week. In fact, it’s legally required to be covered in the state of Ohio, where my Employer (and therefore my insurance) is based. It took a full month of multiple people fighting for my son, fighting for us. A month of phone calls, emails, countless meetings (all with myself, my Employer, the Insurance Broker, the Patient Coordinator at UW, etc.). That alone is exhausting. At the same time, how freaking lucky are we that we have that kind of support not only from UW but also from our Employer? Everything feels so overwhelming at times that I constantly have to remind myself of the good in each moment, just like in this moment.

There has been a lot going on at work, most of which I cannot get into, but suffice it to say, my work life balance is totally off kilter lately as we are making a lot of transitions out here in our Seattle office. I have been working around 50 hours a week for the last two months while also remaining available and on call as needed. Adam and I are also wrapping up our 10^th or 11^th (I’ve lost count) appointment at UW for ABA Parent Coaching. This is something that the wonderful people of UW offered to us as a means to get Adam and I up to speed on ABA Therapy, how it might look for Desmond, and get a head start practicing the tools at home, while we were all busy fighting the insurance company to verify coverage for Desmond’s specific ABA Therapy. This has been on top of Desmond’s OT and Special Education therapies that he already has set up through the week. In scheduling out our calendar for the next two weeks, I realized that I had never scheduled his 18 month wellness appointment; in the midst of all of this chaos, we’ve only had time to focus on two things: Work. Autism. Go to sleep, repeat. That’s it. I had to spend 30 minutes on the phone with the Pediatrician’s office just last week trying to find a time that would work with all the therapy schedules, not fall into the middle of nap time, and still allow us to be able to go to work. Dealing with all of that right now has left me completely and utterly imbalanced, exhausted, and overwhelmed.

Then, we lost our dear friend and cousin Amber Hafer, as you might have seen on Facebook. It was completely unexpected and utterly devastating, still is, as we’re still grieving that loss. Even moreso when I realized that I would not be able to go home to pay my last respects to her and to throw my arms around her Husband Dax, her children, and our families. I have already typed out most of my thoughts about her in Facebook land, but one thing I do know is that it is my goal to strive to be more like her in my life going forward. She battled mitochondrial disease and many dysautonomic disorders throughout her life and still, she would fight for those who could not fight for themselves. She would join family events with a smile, even though you knew she might be in pain. She lived her life for her children and for others in need. And she never gave up. Or gave in. I really to this day, do not know how she did it – especially if I were to put myself in her shoes with the heap that I feel has been on my shoulders the last few months. She’s been there, multiple times, done that – and still somehow managed to laugh and smile through it. I think of her daily, especially as I struggle to battle my own mind, depression, and anxiety of what we are going through right now.

You would think I’d be done there but I’m not. What happens next is that Desmond gets his first ear infection, a double ear infection at that, with temps spiking from 103-104 within those first 36 hours of diagnosis. That’s scary for any Mom or Dad, but add autism into the mix and all you’re thinking is “How or will these temperatures affect his development? His autism? Will they impair him further? Will they cause lasting damage? Will they make him take 10 steps backwards in all the progress he’s been making?” along with “Is this a new thing now that he’s nearly 20 months old? Is he going to start getting ear infections all the time now?” Every single day is a new worry for me right now. And there is no rest for the wicked before the next worry comes along. This week the worry centers around Desmond transitioning into the next room up at school and starting his ABA Therapy at school the same week. Sometimes he’s good with change, sometimes he’s not. I am hopeful, (especially since Desmond’s BFF “T” is already in that room) but preparing myself if it is a struggle at the same time.

While I’d like to just be my infallible, perfectionist, OCD self, and in that, not let others in to what we are currently struggling with, I know that I need my community, my tribe, and others who have been in similar situations as myself right now. My automatic reaction is to turn inward, close off, and deal with the tough stuff myself. In order to grow, I need to change my behavior (ahem, a little nod to what ABA therapy is all about). I am therefore letting you all into the tough stuff going on in our lives right now. I need your support and I need your prayers. Life has been shit lately…but I’d like to take that shit, turn it into fertilizer, and grow a beautiful garden from it, filled with love, light, and prayers from our tribe. xoxo

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).