The Fox Man's World

Wow…one year ago today we shared with the world that Desmond Fox had been diagnosed with autism – a date I will never forget: 3/22/2017. One year ago, we let you have a little glimpse into our life through this blog – what we were struggling with, the good and the bad moments, and the feel-good moments like moving home to Indy! We’ve not written as much as we’d probably have liked to as life has just been happening and we’ve been busy being present with Desmond and our families and friends, getting re-integrated back in Indy. Given that today is World Autism Awareness Day, I thought it was time to post a recent update on Desi Fox.

We just had Desi Fox’s first parent meeting at Cornerstone, giving us progress updates and sharing videos of the programs/goals that he had mastered. I cannot explain how amazing it was to sit there and see him making progress with his Behavior Therapists. He adores them, and they quite obviously adore him. What I think is so great about Cornerstone – is that they first learn how he learns best – and from there, they implement his target goals (aka his programs)! I have always been a strong advocate of teaching to the child’s learning style vs. state mandated lesson plans that are the same for every single child. I’d love to share Desi Fox’s progress with you all!

A little background: Desi Fox attends Cornerstone full time, 7 hours a day. He has 3 therapists – one in the am, one over lunch time, and one in the afternoon that he gets to work with along with his BCBA of course, who sets his programs or targets. What is a program? Well, a program in ABA is like a goal. An example of this for Desmond would be “Points to toy or object of interest” and from there, they build upon it to maybe “Mand for toy or object of interest” or “Interacts with 5 different play items within 30 minutes”. Mand is a term that was coined by Psychologist, B.F. Skinner in the 1950’s that means, “An utterance aimed at producing an effect or result” (oxforddictionaries.com). In other words, Desi is verbalizing somehow or communicating that he wants x object or thing. Desmond successfully mastered out of 74 of his VB-MAPP programs since 1/31/18 – and has mastered out of at least 5 more in the past week! He now says “Mama” and “Dada” and he uses American Sign Language to sign for “Dad”, “more”, “show me”, “iPad”, “all done”, “go”, “ball”, “milk”, “please”, and “light on”.  He’s working on making a wide variety of sounds engaging different areas of his mouth, and he’s rocking it! Overall, he’s having a blast being Desi Fox, spreading his laughter, joy, and charisma all around. He has quite a few friends at Cornerstone and has become a social butterfly, engaging many children at the center with joint play. If you recall, he used to not be able to joint play at all, let alone want to engage anyone else around him in anything. This was one of our earliest “red flags” for autism, looking back on it. As you can imagine, this large amount of learning and play and social interaction has also caused him to regulate his overnight sleep schedule. He’s now sleeping a good 7-10 hours overnight on average. Sometimes he still wakes up once overnight – especially if he hasn’t eaten well during the day or when he’s sick, but we deal with that as it comes. (Sidenote: I thought you all were lying when you said kids really start getting over the ‘being sick every other week’ stage around 1 year old. For us, it took until about 2 years old – but I think we are there now.)

Regarding Desi Fox’s eating, he is still super restrictive, but we are seeing more and more progress there as he’s now totally fine with non-preferred foods on his plate, and touching and smelling a wide variety of foods. He may not eat them, but he experiences them and is okay with that for now. He will sometimes surprise us by randomly taking a french fry off our plates to try. That’s a huge win / success for us when that happens. We still offer him foods that we are eating – if anything, just for exposure purposes. 9.8 times out of 10 – he won’t eat anything outside of his preferred list of foods. Though, truthfully, now that I’ve had some time to reflect, I find it interesting that I too am a restrictive eater. I usually eat the same things for breakfast and lunch and sometimes switch it up at dinner. I’m not a huge meat person – Desmond still to this day has never had meat – I may eat it once a week, but it’s not an everyday food for me. I prefer peanut butter, graham crackers, and yogurt as daily staples in my diet. Well, guess what Desi prefers to eat too? At least he always eats large helpings of strawberries with his! All that to say, I’m trying to worry less about food intake, and worry more about Desi Fox’s overall health and his personal wellbeing. He’s extremely healthy – still in the 90^th percentile, he’s happy all the time – filled with immeasurable joy with each passing day, and he’s rocking life right now. I’m insanely proud of him, and insanely protective of him. He is the light of my life – my joy – my reason for being. He makes me a better person every single day. I am so grateful for everything that he is teaching me in this life. I look back to where I was a year ago and sometimes I think, “Wow, I can survive anything” and sometimes I think, “I’m not strong enough. I’m not a good enough Mom to Desmond. I need to be better, do better.” Autism is a constant flux of emotions from one extreme to the next. I read this line today from another Mom blogger, Carrie Cariello, and I think it is my new mantra going forward: “We will overcome what we can, and make peace with what we cannot.”

*Update: You guys, today he learned how to sign “push” right after it was introduced to him, he started using it independently to communicate that he wanted “more” “push” on the swing. I. Can’t. Even.

Desmond’s new best friend- a ROOMBA!

Waiting – Norah Jones

God Only Knows – The Beach Boys

Cello Song ft. Jose Gonzalez – The Books

“So forget this cruel world where I belong
I’ll just sit and wait and sing my song
And if one day you should see me in the crowd
Lend a hand and lift me to your place in the cloud”

Deep breaths…Buckle up, and hold on tight. I am writing this blog post for myself to process the struggles we have experienced as parents of a child with autism, in very recent days, and to share that with others who have maybe gone through something similar or are going through something similar. Maybe writing will help me manage the tremendous weight of grief and guilt that I am feeling, and immense hopelessness. I am sure it will not be the last time I feel this way. It certainly has not been the first in our autism journey. What I did not expect was for it to seemingly hit me out of nowhere.

To set the stage, Sunday evening Fox Man and I headed over to a dear friend’s home to have a “play date” of sorts us two Moms and our 2 Boys who are somewhat close in age. We’ve been friends for what feels like forever, and we have seen enough of our own ups and downs through this life, that we are family, we are there for it all, for each other.  It started well enough, but as the night wore on, I could tell Fox was struggling. I had noticed how little he interacted with his peer, how little he actually played. He became obsessed with my friend’s screened-in-porch – which is gorgeous, and I would be obsessed with it too if it weren’t the middle of winter in Indianapolis. I let him hang out there for a bit, but ultimately brought him back inside, closing the curtains and refusing to let him go back out. Well, that is when the meltdown began. And I mean meltdown – tears, anger, hitting, no communicating, for God knows how long. It felt like eternity to me. Through this process, I couldn’t do anything to calm him. Not one thing. And I started crying. I tried my hardest, but dammit the tears just fell. This was the first time that it really hit me very hard, how different my child is. This was not a typical 2 year old tantrum – I’ve seen those. While I may not have known previously, I now fully know the difference between a 2 year old tantrum and a meltdown in a 2 year old with autism. The only thing that finally calmed the Fox was a bottle. It is entirely possible he was hangry, and that is moreso what triggered his meltdown. He does this to himself and as much as I try, I can’t force him lately to even eat his preferred foods. Fortunately for me and for him, l was probably in the absolute safest space outside of my own home for this to occur. My friend held steady through the meltdown, making sure her two children understood that Fox was just trying to process too much, he got overwhelmed, and it was causing him to get upset, and we were doing the best we could to help him through it. Afterwards, she held me and let me cry. I cried all the way home. I cried myself to sleep that night. Was this the beginning of the darker side of the autism spectrum? We hadn’t really seen too much of it before – and it hit me out of nowhere, unexpected and I felt totally unprepared for it.

Starting Monday, Fox started his new school at Cornerstone. We were and still are so excited for this opportunity for him. To put into perspective, insurance was previously only approving 20 hours of ABA Therapy a week for Fox, threatening that they might have to take it down to 15 hours in 2018. And that was only for in center ABA therapy in Indiana vs. Washington, which we initially weren’t too keen on, mostly because our son is still pre-verbal, and only 2. That is, until we toured Cornerstone and met the wonderful people there and got to know their program better. We did a lot of research and read many success stories from previous children with autism. When we didn’t hear from them nearly a month after our evaluation, we thought it highly likely that Anthem just didn’t approve the full time 35 hours of ABA therapy a week, and we couldn’t make it work without the Medicaid Waiver as a secondary insurance. So I emailed them and told them hey, it’s okay, we weren’t sure we wanted to take Fox out of his daycare setting anyway, and thanked them for the awesome work they’re doing for children with autism. Not less than 24 hours later I heard back from them exclaiming that they were successful in their fight – and had been working very hard this past month to get authorization and approval for full time ABA therapy for Fox through our insurance, and could he start next week. We were shocked, grateful, surprised, and so very excited for the possibilities that this could bring to our Fox. We knew how successful ABA Therapy had been thus far in his journey at just 18-20 hours a week in Washington and were looking forward to what 35 hours a week might provide for him, helping him to learn how to learn, communicate, and grow in his developmental milestones. Since we moved in October, Fox hasn’t had ABA therapy. I felt grateful that we hadn’t seen too much of a decline in his skills, but he hadn’t really gained any either. So I was very happy to get him settled in, back into an ABA therapy program. 3 days in, and we’re on now a total of 4 days of afternoon and evening meltdowns (including the Sunday meltdown). Last night was the absolute worst one I have ever seen. And maybe that’s because there were two?…but the intensity and the duration of each meltdown last night was enough to knock me off my feet, push me down the rabbit hole of grief, and leave me feeling absolutely hopeless in this world of having a young child with autism. I told Fox’s therapists that very thing in his Desi Fox journal that they write in every day and send home to us to write back in. *(Another really fun part I love of the Cornerstone program). He has not been eating well for us, let alone in his new school with new routines, and that very likely is a huge part of the puzzle – as well as the new school, new faces, new routine, HUGE center, with so much possibility for him to play in. I am sure it is overall overwhelming to such a little guy.

That said, it is beyond heartbreaking to pick up your 2 year old, full of smiles and giggles from his new school, to bring said 2 year old home to turn into a 2 year old Hulk, throwing frames, books, stomping his feet, kicking, screaming, crying, being frustrated, and having absolutely no idea why – and there being no way for him to communicate to you what is wrong and what he needs help with. I tried everything I had in my arsenal: I ignored it at first (*this is usually how I rule out toddler tantrum vs. meltdown for now), I took him to his room for a calming space to listen to music, be in the dark, look at his twinkle stars, I held him tight to my body for compression (think Thundershirts for dogs who are afraid of thunderstorms), singing to him, rocking him, swinging him…and nothing worked. He ended up scratching at my face, fighting me off, and pulling my hair. Yes. My 2 year old, sweet, loving, giggly, soulful little boy – just tried to claw my eyes out for trying to calm him and help him through his emotions. My last resort was giving him a bottle. That seemed to reset him…until Adam got home and I had to hop on a conference call for work. 45 minutes through that conference call, Fox kept grabbing my hand and wanting to follow him, which I couldn’t do because I was on a super important conference call for work. You know, the work that provides for his family and provides his insurance, and keeps us in health and home. No, not important to Fox in the slightest (nor likely any 2 year old for that matter, right?). He. Lost. It. Again. Adam took him to our bedroom so I could finish my call, tried to distract him with his own arsenal of tricks, and again, nothing worked until I could follow Fox around like he wanted me to do to begin with. Some reading this might think, well, that’s not autism, that’s a bratty 2 year old who needs taught a lesson. Let me be very clear: Until you have carried a baby throughout a healthy pregnancy for 41 weeks, gone through absolute hell to induce said baby out into the world only to wind up in the NICU, raised said baby through infancy, as healthy as can be, to then be diagnosed with autism at 17.5 months, and gotten to the stage of being a healthy 2 year old, fighting tooth and nail for basic services to help him learn how to speak, how to eat – you have absolutely NO IDEA what you are talking about. If you are a seasoned psychiatrist or therapist, or a parent with a child with autism or even just a parent who wants to share your own war stories, feel free to give me advice and share. But don’t you dare call my child a brat for not understanding social cues or being able to communicate himself, or suggesting that we need to physically punish him to ‘teach him a lesson’.

I know logically that he is trying to understand his new routine, his own body cues, social cues, and learning SO much in a jam packed 7 hour day of therapy, he’s also not eating well, and that is likely causing his outbursts at home. But for now, I do not know how best to help him through it. And what scares me, is that this will be the rest of my life. Only, when he’s 18, he’ll be 6ft tall, weigh 200lbs, and overpower me quite easily. This very fact is why early intervention is so very, very important. I am trying to be hopeful that Cornerstone will help us through this and give Fox all the tools he needs to eventually be able to process his emotions and communicate better with us. It is only Day 4 of this new school. I am trying to be patient. But I am heartbroken. My soul has been crushed, yet again. I feel like I am not doing enough to help my son. But what more could I possibly do? I have to accept that my love won’t be enough to help him through this. I have to accept that this is autism. And this is a 2 year old with autism. Things are going to get ugly and messy, but with faith, hope, and lots of prayers and struggle, we’ll come out the other side of it with a lot of lessons learned and way more communication with one another. At least, that’s my hope. That’s all I have for now. My very tiny, seemingly miniscule mustard seed grain of hope.

Playlist for this blog post:

Here Comes the Sun – The Beatles

Your Words – Third Day

Oh Holy Night -Pentatonix

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” – Albert Einstein

I haven’t written a blog post in a long while. We have had our hands full with moving back across the country from WA to IN, dealing with the 3-hour time difference coinciding with the 2-year old sleep regression, setbacks in Fox’s sleeping and eating, getting the Fox back into school at Goddard, getting First Steps setup in IN, interviewing and touring ABA facilities, and just getting back on our feet and getting our home together and feeling like a home – on top of working full time, and being a full time Wife and Mother. In all that we have been facing lately, I have not felt inspired to write. It is difficult to put yourself out there with such raw honesty and emotion, and then face potential criticisms or judgments from others, but at the end of the day, if our story has helped just one family, it will have been worth it. I’ll be bluntly honest here: Life has been panic inducing, dark, and depressing moreso for me than anyone lately. I take everything on personally and every little set back felt like my own personal failure as a Mother, as a Friend, as a Daughter, a Sister, and a Wife. I am your typical Type A personality, perfectionist, and deal with my own obsessive compulsive disorder along with that. It doesn’t make major life changes easy. I knew that going in, but I did not expect how difficult it would be or feel. Basically, I had to go through everything I already went through in WA after getting the Fox’s diagnosis, all over again in IN, wherein I have found a lot less support or eagerness when it comes to early intervention and getting my son the help he needs to be the best Fox he can be. I dealt with Postpartum PTSD after the Fox’s birth, and I truly believe I have been living with another version of PTSD ever since getting Fox’s diagnosis of autism, medical code 299.00, on March 22^nd, 2017 (I will never forget those numbers). I have learned a lot along the way that I hope to pass on to anyone else going through an autism diagnosis for their child or even just second guessing something they might be going through with their child, so if you have any questions, please do not hesitate to reach out and talk to me about it.

It wasn’t until this morning looking back at this time last year and realizing just one year ago, the Fox began walking on Christmas Eve, that I felt a resurgence of hope and what can only be described as peace. The Fox learning to walk is one of my favorite memories, as he was motivated to walk towards Jimmy Fallon and The Roots opening Jimmy Fallon’s show with music that Christmas (And if you watch Jimmy Fallon, it was the last day of his 12 Days of Christmas Sweaters, which Fox particularly likes). He was 14.5 months old at the time – and we had just reached out to get our developmental evaluation setup through the First Steps program in WA. I had a “life flashing before your eyes” moment remembering EVERYTHING that we had overcome, accomplished, and learned in that one year. And I mean the collective we of our family – Desmond’s own personal accomplishments along with everything Adam and I have learned as parents, and as parents of a child with autism. I think back to this time last year when I thought the Fox would never eat solids. Guess what, he is extremely restrictive, but he has a list of over 20 preferred foods he eats now. Granted, they are all carbohydrates, Greek Yogurt, and Strawberries (no meat, no vegetables, and no other fruits), but it is a vast improvement when you look at where were were this time last year. Back then he was barely making eye contact. He was not responding to his name. He was not engaging in any kind of joint play nor was he interested in what anyone around him was doing. He would not let us read books to him. He would not point. He would not wave. He would not snuggle. He would not clap. He would not communicate in any way other than to cry. In these areas, and many others, he has grown by leaps and bounds. He is doing all of these things now and learning many others! Thinking about every single milestone in this way, each tear cried – in joy and in pain, each new food added, each smile, and each laugh, and realizing how miraculous each truly is, really opened my eyes this morning. You don’t really think about how difficult the very act of eating is, or communicating, until you have to break it down piece by piece. (Sidenote: Get it together Indiana – and all other restrictive states. This is what early intervention is all about and how extremely important it is to our youngest population, their families, and our communities overall).

Fox’s teachers took a video of him this week wherein he was hitting the wall with the palm of his hand, making a loud sound, and finding it hilarious! Soon, you see in the video that his entire class has lined up on the floor to watch Fox man do this, and join in his laughter. It was amazing to see him leading his class in this activity and creating such joy that envelops the entire room. The exact note from his teachers said: “Today Desi made all of his teachers and friends laugh! He loved the sound made when he hit the wall and he was laughing so much. Naturally, his friends and teachers joined in. The ladies in the office heard his laugh and ran to watch him as well. We were all filled with so much joy just listening to and watching Desi have so much fun! We absolutely love him!”

This morning I am realizing and somewhat remembering through my own fog of PTSD, how miraculous life is and how miraculous it is that we human beings exist and grow into adulthood at all. Grateful for this life and all the lessons that our Fox is teaching us, and the world at large each and every day. That is my Christmas miracle this year.

“A thrill of hope, the weary soul rejoices, for yonder breaks, a new and glorious morn!”

Playlist for this post:

• Times Like These – Foo Fighters
• Coming Home, Part II – Skylar Grey
• Glorious – Macklemore
• Home – Foo Fighters

“I’m a new day rising
I’m a brand new sky
To hang the stars upon tonight
I am a little divided
Do I stay or run away
And leave it all behind?” – Times Like These, Foo Fighters

I can barely contain my excitement and happiness with the latest Fox developments. Thursday night, during Fox’s ABA session at home, I was there to hear him say his name (I swear I heard a chorus of angels – his voice is the sweetest thing on this Earth!), I saw him look at a picture of Adam, then look up at Adam, and say “Dada!”, I heard him attempt to say, “all done” which sounded more like “awww duuhh” and I heard him intentionally say my name, “Mama”. Upon looking at my picture, Adam asked Fox, “Where’s Mama?” and Fox ran to me with a huge smile on his face and a big hug. I could have stayed in that moment in time forever. I cannot tell you how miraculous and remarkable it is to hear your child say your name, with intention. It is something that too many people take for granted. When your child is verbal and can say everything, repeat everything after you, describe their days to you, tell you what they want to eat, tell you what they want to wear or not wear, etc., I imagine that doesn’t feel so miraculous at times. I cannot stress enough – please, please, enjoy their sweet little voices, even when they are annoying, or asking a million questions, or won’t stop describing everything they see, or won’t stop complaining, enjoy that they have a voice and are able to use it. Enjoy that they can do one very seemingly basic thing: communicate.

One more piece of very exciting news to share with our tribe: Adam and I have officially decided to return our little family of three (plus one dog and one cat) to Indianapolis once our current lease is up in October. This is something we have been talking about and trying to figure out over the summer together. This was one of the hardest decisions I think we have ever had to make. There are two things that we are going to miss beyond measure: our UWAC team and the Goddard School in Redmond. Both UW and the Goddard School Redmond have been there for us through some of the most challenging, upsetting moments of our lives as parents, and some of the sweetest, most victorious moments as well. We will miss the tremendous support and services that they both collectively provide to us and Fox.

Living here alone and 2,000 miles away from any friend or family ultimately is just too difficult for us to continue moving forward in our lives in Washington. We’re taking wonderful care of Desmond here with all his tremendous support and therapy; however, Adam and I both are exhausted, stressed, and just burnt out because all we focus on is work, therapy, learning everything we can about autism, and helping our Fox. There is no support for either Adam or myself. There is nothing to look forward to collectively; there are no date nights, no family dinners, no support if we’re sick or having bad days and just need someone to talk to, no “time off” from life, and no time off from life with autism. I’m not afraid to say all the above has been a challenge, and to best serve Fox and be the parents we want to be for him, we must do so with some support of our own, such as our families and friends. Something that has stuck with me since the day we received the diagnosis for Fox at the Center on Human Development and Disability (CHDD) at the UW Medical Center, was Dr. Cindy Johnson saying that if anything ever became too much, or we felt imbalanced in any way, the right thing for us to do would be to take a step back, assess the situation, and do the right thing for our family unit overall. I feel confident that is exactly what we are doing with moving back to Indianapolis.

I want to also share that there have been beautiful, magical moments here in Washington for our family. I am sad to leave it behind because even though it has been the most challenging 18 months of my life, Washington has become home. I’ve been called a “local” numerous times now – and that makes me feel like I actually belong. Washington is a beautiful state that honors many of the things that Adam and I believe in. I am eternally grateful to have lived in Washington and to have experienced its majesty firsthand. Fox learned how to crawl here. He learned how to climb stairs here. He learned how to walk here. He met his best buddy “T” here. We’ve experienced extreme highs and extreme lows here together as a family. We’ve experienced unprecedented beauty and adventure that cannot be replicated: Mount Rainier, Pike Place Market, University of Washington in the Spring with all the cherry blossoms, crabbing in Skagit Bay off Camano Island – seriously, there’s nothing like just pulled from the water crab with butter, Anacortes and Fidalgo Bay, Mount Baker, Lake Washington, ferry boats, Fremont, Bainbridge Island, and who could forget, the Space Needle! That’s where Fox’s first birthday was, and where he first learned how to use a straw, much to my surprise after I forgot his water sippy cup that day. In all that beauty though, there is always one thing missing, and it is that very thing that is at the core of who Adam and I are as individuals and who we are as a family unit. That missing piece is our family, which is made up of our friends, blood relatives, and our community that surrounds us. There’s a Macklemore lyric in the song “Can’t Hold Us” that says: “I got my city right behind me, if I fall, they got me, learn from that failure, gain humility, and we keep marching…”. I think about that lyric a lot and I just don’t feel that way where we currently are. I have no sense of community (though Adam and I do work with a bunch of kick ass people!). I do, however, have that community in Indianapolis, and by extension, so does my family. I have always felt like Indianapolis had my back. To return some sense of balance to our lives, and to live our core value of family as a top priority, we are returning home to Indianapolis in October.

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

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