ABA Therapy and Summer Updates

Playlist for this post:

  • Teardrop – Jose Gonzalez
  • Mountain Sound – Of Monsters and Men
  • Shine – Benjamin Francis Leftwich

“Some hid scars and some hid scratches
It made me wonder about their past
And as I looked around, I began to notice
That we were nothing like the rest…”

Wow, I cannot believe we have not blogged since June! Well, suffice it to say, we’ve had our hands full – from work, to ramping up Fox’s Applied Behavior Analysis Therapy (ABA) offered through UW at school, ramping up evening ABA at home in the evenings, and Parent Coaching based on the Early Start Denver Model (ESDM) for Children with Autism – on top of trying to have a few fun family moments too! So that’s what this post is about: ABA Therapy and everything we’ve learned thus far on our journey. Highlights from the Fox’s summer include playing in the water at Redmond Town Center, swimming in a pool for the first time, going to the beach at Idylwood Park and pressing his toes into the sand and into the water, learning how to sign “more” and “please”, saying his name, exclaiming YEAH! and “HEY!”, and Mum, and DaDa (though not as often as we’d like – he can do it!), to running around the Redmond Public Safety grounds, creating sidewalk chalk art – every day, and discovering Moana and Lin Manuel-Miranda. Overall, I’d say it’s been an extremely exhausting but quite successful summer.

I will be the first to admit that things have not been easy for us since moving so far away from our home base of Indianapolis; in fact, it has been the most difficult 18 months of my life to date (and if you know me at all, you know I’ve had some doozies in my lifetime!). There has been one very shiny, sparkly silver lining in the grey clouds for us: The University of Washington. If there was no other reason for us to move to Washington, being here to receive early intervention services that allowed an early, nearly immediate diagnostic evaluation for our son (16 months), a diagnosis (17 months), and ABA therapy to start helping us and Fox (19 months to present age), made the 2,000 miles move, every tear, every moment of heartache, worth it. I get quite emotional thinking about the amount of world class help and support that we have found in Washington through the University of Washington Autism Center (UWAC), as well as Kindering for the Early Intervention Services that kicked us off on this journey. Through UWAC we have received diagnostic evaluations, family support, ABA Parent Coaching, BCBAs, and their ABA services. Truly, I do not think there is anything like the amazing staff there – from the Intake Coordinator to the Director of Clinical Services and everyone on the staff in between. They have provided invaluable knowledge to us to best help our son. As such, I will rock the purple and gold and UW gear for the rest of my life. And one day, I hope that Fox can continue our learning adventure and take some courses from UW himself.

I’d love to talk more about ABA in this post because it has been our strongest focus over the summer and has produced amazing results for Fox and for us. To do a little more research about ABA, I highly recommend the book: “An Early Start for Your Child with Autism: Using Everyday Activities to Help Kids Connect, Communicate, and Learn” by Sally J. Rogers, Geraldine Dawson, and Laurie A. Vismara (Spoiler Alert: Geraldine Dawson was the Founding Director of the University of Washington Autism Center). Applied Behavior Analysis (ABA) “is the use of teaching practices that come from the scientific study of learning to teach or change behavior. The principles of ABA can be used to teach new skills, shape existing behaviors into new ones, and reduce the frequency of problem behaviors” (Rogers, Dawson, & Vismara, 2012). When we first started reading this book, I remember thinking, this is all so overwhelming. Fox can’t even look at us or follow our gaze or respond to his name being called, let alone engage with us or play with us. How is this going to work? We were fortunate enough to get to work with Desmond’s Board Certified Behavior Analyst (BCBA) Cameron and the Director of Clinical Services, Dr. Greenson each week for 2 hours for ABA Parent Coaching, which walked us through 1-3 chapters of this book a week. We would then meet up the following week, go over highlights from the chapter, what we were struggling with, what we were able to implement, any new noted behaviors we’d seen, ways to put into place information from the book going forward into the next chapters, etc. This also allowed Cameron the opportunity to get to know Desmond first hand through experience, while we were present to watch and learn as well. She would interact with him weekly and he was able to comfortably get to know Cameron in a safe space. These sessions were pivotal moments for me after being given the Autism Spectrum Disorder, Severity 2 diagnosis for Desmond in March. I felt understood, I felt that others understood my son and would be able to help him, and I saw a spark in Desmond many times in these sessions of play and learning that showed that he was really getting something positive out of the experience as well.

So what is ABA Therapy? ABA Therapy breaks down the ABC’s of learning, which is: “antecedents (events that immediately precede a behavior), behaviors (your child’s goal-directed actions), and consequences” (Rogers, Dawson, & Vismara, 2012). One of my favorite things about ABA therapy that is similarly in line with Fox’s school, is that it uses play based therapy, so it follows the child’s lead in play and as such creates a calm, inclusive, and fun environment to maximize participation and increase the likelihood of successfully learning new behaviors and skills. Using the scientific methods behind ABA Therapy, we have been able to motivate and teach Fox all kinds of new behaviors and life skills like pointing, following our gaze, responding to his name, bringing us toys to play with, cleaning up his toys once he’s done playing with them, engaging us directly to communicate, even if it’s nonverbal communication, responding to our verbal requests, bringing us food from the pantry when he’s hungry, taking turns, enjoying others socially, etc. These are all joint behaviors, meaning more than one participant; i.e. to tell us he’s hungry, Fox will bring us a box of graham crackers from the pantry. He must bring us the graham crackers and point to them to tell us he is hungry and would like a graham cracker. During this time, he’s also vocalizing to communicate with us. He may not be able to say, “I’m hungry” or “cracker” but he is doing everything he can to get our attention and let us know that he is trying to communicate with us. Joint attention is one thing that is infrequent in younger children with ASD – so these gains that he has made in the last 3 months are astronomically huge in our home. Many of these new behaviors for Fox you wouldn’t even notice as being anything new or out of the ordinary yourself – you would think, he’s just acting like a normal kid. Side note: We say neurotypical kid in our house. Normal is a setting on a washing machine. Understanding the ABC’s of learning has allowed Adam and I to break down and understand behaviors that Fox has as well, and if there is ever a meltdown (*which is quite rare for us, honestly – even with being a toddler AND having autism. I am perpetually amazed at the calm, joyous personality of our Fox), we can break down the behavior, figure out the antecedent that caused the behavior, and determine a consequence and/or use the understanding of these things to create an opportunity for learning and growth.

Upon diagnosis in March of this year, Fox was prescribed 40 hours of therapy a week (ABA, Speech, Occupational Therapy, etc.). As a not nearly 2-year-old, that kind of intense therapy schedule is impossible for him and us as a family overall to maintain a work-life-family balance, so he currently gets around 20 hours a week, some at home and some in school, including 1 hour of Speech Therapy and 1 hour of Occupational Therapy. The rest of the time, he gets to be a kid and have fun with his friends, learn at school, do artwork, and take long walks on the Sammamish River Trail with us. Even with that attempt at balance, we constantly feel like all we do is work and do therapy / learn more about autism, go to bed, wake up and repeat. It’s like Groundhog’s Day around here sometimes. Even if we’re attempting to do something fun, at least for me personally, I am always worried or thinking about autism, behaviors, Fox’s future, what progression he’ll make and at what cost with other regressions. Will he ever go to school? Will he be able to make and maintain lifelong friendships? Will he be able to speak? These are questions that I cannot answer yet, but what I do know deep in my soul is that we are doing absolutely everything that we can to ensure that Fox is the best Fox that he can possibly be while still enjoying life and school and his friends and time at home with us.

If you would like more information about our experience at the University of Washington or our experience with ABA Therapy or Early Intervention Services, or you have questions, please do not hesitate to reach out and contact us! It is our hope that through this blog, we can share our experiences and teach the world a little more about autism for there to be better awareness, understanding, and compassion overall.

Special shout out and gracious thank you’s to Fox’s YiaYia and Grammie for purchasing “An Early Start for Your Child with Autism: Using Everyday Activities to Help Kids Connect, Communicate, and Learn,” and reading along with us each week to also learn alongside us and be there for our Fox.

Bibliography

Rogers, S. J., Dawson, G., & Vismara, L. A. (2012). An Early Start for Your Child with Autism: Using Everyday Activities to Help Kids Connect, Communicate, and Learn. New York, NY: The Guilford Press.

 

Pity

Since Jenni and I have started sharing our journey navigating this new world of having Desmond diagnosed with ASD, we’ve received varying amounts of response and feedback. For the most part people are overwhelmingly supportive. Prayers and thanks and understanding and encouragement are all forthcoming and plentiful. As of yet nobody has chastised us for sharing so openly such a private, difficult experience. But sometimes people say things that have an underlying sense of… pity.

I don’t think it’s ever intentional, and maybe it is unavoidable, but for anyone out there reading these words, I don’t want you to feel pity for us. You see, to me Desmond is perfect. Yes, things can be more difficult at times, but If I could magically take away his ASD, I wouldn’t. That’s part of who he is. He sees the world through different eyes in a completely unique way. Taking away his ASD would be to take away his personality and a part of who he is, and there are so many wonderful things I love about our little Fox Man.

Here are a few of my (current) favorite Foxy things:

  • Desmond loves cars. Whenever he sees one out on a walk he laughs and smiles and it melts my heart.
  • Desmond loves to examine how things are built. He examines objects from every angle, figuring out how they work and how they’re put together. It’s so much fun watching him figure things out.
  • Desmond loves music and singing. Whenever he’s upset all we have to do is start singing Little Bunny Foo Foo or some other song and he’ll calm down and pay attention to us. He hums all the time and I love it.
  • When Desmond wants to go outside, he brings us his shoes. He’ll turn around and sit on our laps while we put them on. Then he’ll push us toward the door where he wants to go. He’s getting better and better at communicating what he wants.
  • I always have Desmond open the garage door. He loves to push the button. My favorite thing is when he looks at me first with a big grin on his face before pushing the button.
  • Whenever Desmond wants a cracker or pretzel or other snack, he’ll open the pantry door himself and bring us the box of what he wants. Then I’ll have him point to the box every time he wants another cracker. He used to never point, but now he does so all the time and each time he does my heart soars with victory and happiness.
  • Desmond likes to go outside on the balcony. He thinks it’s hilarious to slam the door on us and keep us inside. I’ll put my forehead up to the glass and he’ll mimic me and we’ll have a staring contest through the glass door. It’s so much fun!
  • All I have to do to make Desmond laugh is fake a sneeze. Hilarious!
  • Every day when I pick Desmond up from daycare, we do what I call the “slalom” outside. I’ll run back and forth through a series of posts with him on my shoulders and he laughs the whole time. Always a great end to the school day.

I could go on and on about all the wonderful things I love about Desmond that make him special. In fact, I probably will in future posts because I don’t want to forget any of them as he grows up. My point is, I love Desmond just as he is and I wouldn’t change a thing about him. Yes, we’re doing therapies to help him grow and, in essence, change him to be more neurotypical, but that’s totally different. We all want our kids to grow and learn.

I am the proudest dad in the world and I will not take for granted a single moment of the amazing journey we’re on. It’s my honor and privilege to help Desi become everything that he can be and grow into an amazing little Fox. Every day he gets a little bit bigger, stronger, wiser and more courageous. So everyone out there reading about our journey, don’t be sorrowful. Don’t be sad or feel regret or disappointment for us. Desmond is exactly the person he was born to be and I can’t wait for you all to see him grow. He’s pretty amazing.

Stimming

Playlist for this blog post:

  • Storm – Jose Gonzalez
  • Breathe – Alexi Murdoch

Stimming is a repetitive body movement that self-stimulates one or more senses in a regulated manner. Stimming is known in psychiatry as a “stereotypy”, a continuous movement. For Desmond, stimming occurs while seated, rocking back and forth, regardless of where he is sitting. When he was younger, it meant spinning round and round in circles. Another stim for Desmond is spinning cars, though I really can’t say that I see a difference in his enjoyment whether he is stimming or playing with the cars. He loves anything that spins and will enjoy playing with items that roll or spin all day long if he could. His preferred stim though, is rocking.

Desmond wears a Spio (http://www.spioworks.com/) compression vest under his clothes daily from the time he wakes up until we get home from school/work. We have to take it off of him around 5pm or else he will never go to bed. (Think about it – you’re compressed all day, and then suddenly there’s this big energetic release once that compression is removed.) This garment helps regulate Desmond’s vestibular system and provides him with the extra sensory input that he needs throughout the day to not stim as often or as severely. Without the Spio, he will rock quite frequently because he has such a high vestibular / sensory need. Another way this shows up is by Desmond walking around and nearly running on his tippy toes. Again, this is something that increases if Desmond is not wearing his Spio. Like this weekend, it was 86 degrees throughout the holiday weekend here in Washington. While that may sound nice (and don’t get me wrong, we did enjoy the sun!), let me assure you, it’s not nice in WA wherein only 20% of the entire state has air conditioning. (What is wrong with these Washingtonians?!) Even the newly constructed apartments going up around town are not constructed with air conditioning. We have a few portable A/C units, one in Desmond’s room and one in our main living room, that attempts to keep our home somewhat tolerable in that kind of heat. Due to the heat, however, Desmond was unable to wear his Spio, which caused him to need to stim more, i.e. more tippy toe walking, more rocking and humming, and less focus. Anytime we see an increase in stimming, we tend to worry; however, in this case I believe it was due to Desmond not wearing his compression vest and being uncomfortable teething all weekend. While these are certainly mild behaviors, it is one outward expression of Demsond’s autism that anyone can see.

Desmond stims at restaurants in those hardback wooden high chairs, which is another reason we don’t go out to eat all that often as a family. If we do, we go at off hours to avoid the crowds and the noise. There was one experience wherein Adam’s parents were visiting us recently and we all went to Tipsy Cow (local sit-down burger joint) on a week night. It made me nervous because any kind of change to Desmond’s routine or schedule can throw him off completely, but I also told myself, we can’t always live life according to “The Schedule” because life happens! There are unexpected twists and turns sometimes. And dammit I’d love to go out to eat. (And then I’m instantly reminded of the show Parenthood and their son Max, who has Asperger’s. Deviating from the schedule equals epic meltdowns on that show. I should have known better.) When we arrived, it wasn’t too crowded but as we were seated and placed our order, it got packed for the dinner hour. It was loud, there were people everywhere, tvs on all over the place showing different shows, and all kinds of smells. Desmond was rocking really really hard, so hard that he could’ve easily rocked his chair over and flipped it if I hadn’t been holding on to it, and I was worried that he would hurt his back from all the hard rocking. He has bruised his back a few times doing this. I did everything in my power to distract him and to keep him from rocking, but the overstimulation was simply too much for him to take. I wasn’t able to eat because I was so focused on him and feeling horribly that I put him in that situation wherein he had the potential to be overloaded. That was also one day after we received Desmond’s official diagnosis of autism. I remember on the drive back home from dinner, breaking down in the car and just sobbing for what I willingly put my child through, for the life that I imagined that was now likely very much gone, for something so simple, going out to dinner with family, and how that seemed impossible now, and also feeling the anxiety and overwhelming stress that must’ve been felt by Desmond to cause him to rock so hard and so much. I also felt guilt as I saw many different families looking at us strangely, and looking at Desmond strangely. I wanted to scream, but I held it all down and inside until I got in the car to drive home, and even when I did sob and release, I did so quietly because I didn’t want Desmond to hear me. It always breaks my heart when I walk into Desmond’s classroom at school to pick him up and see him rocking and humming in a corner by himself, away from all of his peers. His teachers do everything to engage him and to keep the other children engaged and happy too (seriously, Desmond’s teachers are Saints in my book), but they also understand that sometimes Desmond just wants to be on his own. If he’s stimming, he is doing it to provide himself comfort, whether he’s stressed, anxious, bored, or just looking for a little extra sensory input. Stimming reduces meltdowns and increases focus for a person with autism. I have to remind myself that it’s his natural process of alleviating anxiety, stress, and sensory overload, as well as his way of centering himself. It’s really no different than me breaking out some ujjayi yogic breathing in the middle of a stressful meeting, or sitting at my desk meditating.

I’m also writing this so that you all know what that means when you see a little boy or a little girl out and about and he or she is rocking and humming, or flapping their hands, or smelling objects, or snapping fingers, or even more seriously and severe, banging their heads against a table, wall or the floor. Don’t judge those parents who are out and about with their children who seem to have these extra needs. If you see a child breakdown in the middle of an airport, banging their head against the floor, show some compassion for that parent and that child. Don’t stare. Ask how you can help, if you can help. I think the same courtesy should be extended to all parents, really. We’re all just trying to do the best that we can on any given day.

“For me, I am driven by two main philosophies: know more today about the world than I knew yesterday and lessen the suffering of others. You’d be surprised how far that gets you.” – Neil deGrasse Tyson

Life Lately

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 10th or 11th (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

Where We Need to Be

I’ll be honest with you. Things suck right now. I’m down. Jenni is down. Work is stressful and all of our energy is going toward trying to help Desmond the best that we can. Our family and main support are all back in Indiana, and to top it off there has been a recent family death that has hit us pretty hard. Yeah, life sucks right now.

I also realized something yesterday. We have officially lived in Redmond for one year. When a milestone like this happens, it’s easy to get lost in reflection. I begin asking myself, “Was this the right move? Why are we here? Shouldn’t we be closer to family during these trying times? Was it worth the time/expense/stress to uproot my entire family to move across the country?” All deep questions to ask when you’re feeling down.

Most people may not know this about me, but I am a deeply spiritual person. Not religious. Spiritual. This will come as a shock or surprise to most, because I almost never talk about my beliefs. They are my own and that is generally good enough for me. At this moment in time though, I feel the need to write some of them down.

Why are we here? What is the meaning of life? Why do bad things happen? I believe I have the answer to all of these questions, and it’s simple. We incarnate to this world from a higher plane of existence so that we can experience this world in all its glory, the good with the bad. Every experience we go through helps us grow and mature as an individual part of God/Allah/Brahman/Buddha or whatever other higher power you choose to believe in. We are all a unique part of this higher power and every time we experience and grow we are contributing to the overall growth of this higher, universal power.

Another belief of mine, which might be a little harder for some to grasp, is that we plan out our entire lives and the things we want to experience and learn from before we incarnate to this world. Mothers, Fathers, Sons, Daughters, Best Friends, Kindred Spirits… these are all predetermined by ourselves on the Other Side before we come here.

Knowing this, it’s easy to see why I am the way I am. One of my favorite quotes is “Whatever happens, happens.” I truly believe this! Everything that happens is supposed to happen exactly the way it should – exactly the way it was planned.

Of course, I don’t know if this is true. There’s no way to know, really. But this spiritual belief/philosophy helps me understand and accept all things. A dear friend has a brain tumor? That is awful… for him, his family, his friends… but it’s all those unique experiences from all those individual people that combine and contribute to the growth of all. And it was all planned in advance, by us, and we’ll meet about it and laugh on the Other Side once this life is over.

So to return to my original, personal deep questions in regard to our move to the Pacific Northwest. Was this the right move? Why are we here? Shouldn’t we be closer to family during these trying times? Was it worth the time/expense/stress to uproot my entire family to move across the country?

Yes. We are meant to be here because this is where we need to be. This is where we planned to be. Without this move we most likely wouldn’t have caught Desmond’s diagnosis so early, and Seattle has some of the most amazing ASD resources in the world. We really are lucky to have gotten him into these therapies and programs so early.

Is it hard? Yes. Is it stressful? Yes. Can we do it? Yes. Is it meant to be? Yes. I truly believe there isn’t a thing that life can throw at us that we can’t overcome, because we planned it ourselves in advance. The harder the experiences are the more opportunity for growth, and that’s exactly how it should be. As Franklin D. Roosevelt once said, “A smooth sea never made a skilled sailor.”

Comparisons

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.

Using Game Thinking to View ASD with a Different Perspective

Anyone who knows me knows I love video games. As an 80s kid, I grew up in the golden age of Nintendo and Playstation. I’ve played games my whole life- The Legend of Zelda, Final Fantasy, Mario Brothers, Mega Man, etc. Some of my fondest memories are playing Zelda with my Mom, her screaming to “Get him in the butt!” (for those enemies you have to hit from behind). To this day I play games. Jenni can attest! I even keep detailed spreadsheets on some of my favorite characters and the progress I’ve made toward leveling them to their max.

Faced with the diagnosis of ASD, I can’t help but liken this new experience to that of one of my favorite games.

Ocarina of Time, released in November of 1998, is credited by many as the greatest game ever made. I was 14 when it came out, and it has left a lasting memory on me throughout my life. One of my favorite mechanics in the game is something called Hero Mode, or the Master Quest. Basically, it’s an option to make the game more difficult. Less hearts, more difficult enemies, harder puzzles. It’s much, much more difficult, but the challenge makes it that much more rewarding when you win.

Well, that’s how I’m beginning to feel about Desmond and his ASD. It by no means makes him less. In fact, I think it makes him more. Raising him will simply be more challenging, and conversely that much more rewarding an experience. The game is harder, but it’s still the same game, and every accomplishment we make along the way is that much more meaningful. When offered a choice in a game, I would never choose easy mode. The harder the challenge the better!

One example: When Desmond was a little less than a year old he began to use less eye contact with us and not respond when we called his name. At the time I didn’t notice much at all. Desmond was just being Desmond. When we started therapy though, that was one of the first things we started working on, and watching him respond to the therapies has been truly inspiring. Now he uses eye contact almost all the time when we’re playing, and he responds when I call his name 90% of the time. It’s a unique sense of pride and accomplishment now when I call Desmond and he looks up and smiles at me. I have to wonder if I would appreciate a look, a smile, or a hug as much if it didn’t come in the face of adversity.

Today Jenni and I begin ABA training at the University of Washington. I am thrilled and excited to learn all sorts of new methods for helping my little Fox Man learn and grow in his own unique way. I feel like a character in an RPG about to level up some skills to better help in the quest! Alchemy? No. Blacksmithing? No. Lockpicking? Maybe. Fathering? YES! Max out those skills, please.

Start New Game
Choose Difficulty:  easy    medium    hard    pro
Begin!

The Diagnosis

The place: University of Washington campus, Center on Human Development and Disability. The time: Wednesday, March 22nd, 2017, 12pm EST. Jenni and I had to take a day off of work to drive in from Redmond. The reason: Finding out whether or not Desmond, our little Fox Man, was positive or not with ASD.

A lot had lead up to that moment in time. Jenni and I uprooted our fledgling family and moved out to Redmond, WA a little less than a year ago. Due to that move, the past year has been filled with many ups and downs. UP – All the new experiences the Pacific Northwest has to offer. DOWN – Not having the support of our family and friends. UP – An amazing school for Desmond and awesome jobs for Jenni and me. DOWN – Rain… Lots and lots of rain.

Overall it’s been an amazing, life-altering experience. It’s been hard, sure, but then aren’t all good things in life worth the challenge? It wasn’t until Desmond’s first birthday that we (and by we, I mean Jenni and her amazing intuition) began to notice that something might be a little off with our little Fox Man.

  1. He LOVES spinning things. Anything that spins or has wheels, Desmond can spend hours playing with it.
  2. Desmond doesn’t really like socializing much with other kids his own age.
  3. He is VERY picky when it comes to the textures of food, preferring crackers and yogurt.
  4. Desmond repetitively rocks on the couch or in his high chair.
  5. He was starting to not use as much eye contact with us.
  6. And the big one… Not pointing or mimicking clapping or other gestures that he’s supposed to do by this age.

While any one of these isn’t cause for concern, when Jenni started noting all of them we decided to take Desmond to Kindering, an amazing school out here that specializes in assessments and early intervention. I’ll admit, I was skeptical at the time. “There’s nothing wrong with Desmond,” I kept telling myself. “He’s just learning things at his own pace.” Well, I was wrong. Desmond definitely qualified for Occupational Therapy and Educational Therapy.

Those therapies really helped change my perspective on things, simply because I immediately began to notice improvements in areas I hadn’t realized Desmond even needed improvement. His eye contact became better. He became more social. We learned all sorts of exercises we could implement to help him eat better.

At the recommendation of his OT, we decided to also get him an official assessment to see if he was on the autism spectrum, otherwise known as Autism Spectrum Disorder. That’s where the University of Washington comes in. They had a cancellation and we were able to get an appointment for Desmond relatively quickly. After a few appointments driving out to UW and having Desmond evaluated, we finally arrived at the day of the diagnosis.

The diagnosis: Yes, Desmond does have Autism Spectrum Disorder.

I felt so many conflicting emotions when I heard the news, sitting in that tiny room next to Jenni. Worry for the future. Anxiety about what would happen next. Impatience at wanting to get started doing everything we could possibly do to help our little Fox. Relief at having our feelings and observations validated by a professional.

It’s been a little over a week since that diagnosis, and I am still coming to terms with what this really means for my family. Jenni and I are doing everything we possibly can, but there are days when I still feel like there is more I can and should do. Soon we’ll be starting our own ABA training at the University of Washington, which I’m sure I will write about more when it starts next week. Despite all my efforts though, I’m still filled with worry, anxiety, impatience and relief. But there is one more emotion I feel: HOPE.

What does the future hold? I’m really not sure. One thing I am beyond grateful for is my amazing partner and wife, Jenni, without whom I would have gone on pretending things were okay. Her intuition told her something was wrong, and I’m glad I listened to her. The earlier you start intervention with ASD, the better, and we are starting therapies very, very early. I have high hopes for the future.

A Mother’s Intuition

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 12th 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 22nd, 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).