Everybody has their own unique journey. This is D’s timeline, his milestones and a recollection of thoughts of those moments.
• 2013 •
D was born! In classic D manner, he’s been somewhat literal since day one. He was born on his due date via cesarean after my wife labored for more than 24 hours. He had some head trauma from the doctors’ multiple failed attempts at extraction and he spent some time in the NICU, but other than being a huge baby (just shy of ten pounds!) everything else was pretty normal.
As a baby, he was alert and attentive. He was very cuddly and loved holding hands as early as five or six weeks of age. D was not a great sleeper, and if I’m being perfectly honest, he sucked at sleeping. D would sleep a cumulative six to eight hours in a 24 hour period. This was scattered across a small handful of naps at inconsistent times during the day and night. We went through the first year and a half of life in this pattern. It was…long. Very, very long.
• 2014 •
Fairly early on we noticed a sort of aloofness in D. He wasn’t interested in playing with toys but would instead be content to sit with us and hang out or he’d spend time jumping in his exersaucer. We thought he just didn’t care about toys. If we’d set blocks down in front of him, he’d stare. If we gave him toy animals, he would look elsewhere. Books were the one exception. He loved (and still does) books! We saw him light up with a couple Disney or Pixar movies as well as Jeopardy!. Watching an infant engage with a show like Jeopardy! is a trip. He had parts of movies memorized and knew the opening note of his favorite show. These things struck us as being odd and unique but not necessarily as being “off”.
In actuality, D had no idea what to do with toys. He simply wasn’t wired to play. Eventually when he figured out that if he pressed a button and a light would illuminate or if he spun a wheel it would spin and make a noise, he did so obsessively. It was at about that same time that he kind of began to disappear. He would sit in a corner and stare, or he would spin the wheels of a car until we would take it away to break his trance. Or, he’d rock on the sofa, shouting, until he passed out.
These things came on gradually and he was still hitting his developmental milestones so we were able to brush most of his “isms” off as passing phases or quirks.
We had an Easter gathering with family. When D was around groups of people or his older cousins, he would continue his pattern of not engaging. If we would go up to him and seek out smiles or make him laugh, his happiness came freely, but we would always seek it, rather than him coming to us.
There was a back yard Easter egg hunt. All the children ran around collecting eggs and put them in their baskets, except D. He just ran. My wife and I would chase him, help him find eggs, put them in his hands and try, with every fiber of our being to get him to put the eggs in a basket. Again. He was simply not wired to “put in”.
D loved watching videos of himself laughing. We had a few on our phones that we’d play if we were at the doctor, or stuck in a checkout line or if he was throwing down. It worked and it made him ecstatic. We decided to go get a picture with Santa armed with our arsenal of his D’s favorite videos. We went on an off day at an off time hoping that it would be slower and as luck would have it our plan worked pretty well
We got to Santa, handed D over to sit on his lap, and there he sat. Blank face. Sitting there. Staring. So, we whipped out a phone and started playing our D laughing video and he lit up and we got a smiling, happy little boy sitting with Santa.
And then Santa looked at us and said, “Thank you for bringing him out.” And my wife knew. She knew D didn’t put things in baskets for a reason, she knew he rocked himself to sleep for a reason, she knew his tip toe walking wasn’t just a phase. She knew that it wasn’t that he simply didn’t care about toys, it was that he didn’t know how to play. I wasn’t as keen as she was and give her full credit for taking note of all of this and starting the ball rolling with seeking the help we needed.
Our little boy was different and he was on a path to becoming more different. Shortly after the holidays we talked to my wife’s brother and sister-in-law who are in education and thankfully, without hesitation, they recommended we contact Fraser.
I’ve written about this more in depth here: Santa Knew
• 2015 •
D had his first appointment at Fraser. This was an observational meeting where my wife and I were interviewed and D was observed playing and interacted with in a play setting. I remember being pretty convinced that they were going to tell us something along the lines of his development being stunted due to screen time… as ridiculous as that sounds now, looking back on it, it was totally plausible in my mind at the time. There was a big part of me that didn’t believe, or didn’t accept that there was anything off about our son…that what was going on would be immediately “correctable” for lack of a better word.
The team helping us that day concluded what they were doing and without wasting any time sat down with us and told us that D did indeed display several hallmarks of being on the autism spectrum. They were very good at what they did; very practiced, and very gentle with us. They reassured us first and foremost that it was nothing we did… that we did not break our child. They said that D being SO young (he was 15 months at this time) was incredible. They said that they felt he would benefit from intervention services as soon as we could possibly begin scheduling them.
I remember feeling a mixture of emptiness, and funny enough, relief. Emptiness at the great unknown in front of us. Emptiness at what had just changed and what that meant…the potential staggering implications. What did this mean for D’s future? For our future? And relief that we had an answer as to what was going on with our baby boy.
D began services at Fraser. We began with one occupational therapy session per week, one speech therapy session per week and one family therapy session per week. We adjusted to our new schedule of traveling back and forth from the west side of the metro to the east pretty quickly and very soon it became our normal.
Any preconceived notion of what these therapies would be like was put to rest within our first couple weeks. Instead of learning vocabulary building techniques, we focused on tapping once on a closed container of snacks to begin building the desire to request help. One tap on the lid of a sealed container… that was our focus for multiple sessions.
Instead of learning to throw a ball, we focused on trying to help Declan build coping mechanisms to calm down when he was upset. We learned that he lacked core strength, a classic trait among many autistic kids, and we tried to do as many simple tasks on his belly as we could stand. …or as he could stand. He hated it.
D began attending ECFE, or Early Childhood Family Education, in our school district. We wanted to get him around other kids his age and socialize him. There were five or six other children along with one or both of their parents so it was a pretty decent sized classroom of people.
ECFE was pretty eye opening and telling for us. It marked one of the first, or the first real time we saw many of the differences in our son, side by side with peers. While other children were playing with musical instruments, blowing bubbles or playing pretend with hand puppets, D would be sitting alone, paging through a book. Or he’d be running around the room either looking for a way out or for a pop up toy to examine.
D began receiving supplemental services through our school district. This ended up being a somewhat short lived round of home based services that included leagues of paperwork and some play based speech and OT evaluations. The people helping us through our school district were fabulous but definitely were working within the constraints of the public school system. This experience really gave us some insight in to how fortunate we were to have gotten in to Fraser for D’s services.
In preparation of the arrival of D’s younger brother as well as making the most sense for our family as far as D’s schedule went, this is when my wife exited the workforce.
We began trying to prepare D for his baby brother’s arrival by narrating many brother related thoughts, talking about big brother this or baby brother that and we bought a Cabbage Patch doll for him to explore. He hated it. This should have been foreshadowing for us…
D began attending speech and OT twice per week. We had been on a wait list for these additional appointments and grabbed them as soon as we could. We really began to notice the effectiveness of his time at Fraser and wanted to maximize this incredible resource.
It was around this time that D began music therapy as well. He has always responded well to music. I think it makes sense to him on a very logical level, though I could be off in that assertation. Much like OT and speech, music therapy began with tiny explorations of the room and instruments. The tapping of a drum, touching a piano key, touching a guitar.
D turned two years old!
We didn’t have a party with a bunch of kids or family and friends. We didn’t go to a pizza place or some other kid friendly restaurant. We didn’t rent a bouncy castle, though that would have been awesome.
The three of us went to a park near where we lived at the time that we had affectionately dubbed “Dog Poop Park”. …earlier in the summer, you see, there had been a rather unfortunate stepping in dog poop incident, as you could guess, that resulted in a pair of shoes hitting the trash.
D loves to run. He wouldn’t run away from us indefinitely, though we never tested it by giving him the opportunity to see for sure. He just loved moving and running. At Dog Poop Park there was plenty of room to run, and we let him. Looking back, it’s an incredibly fond memory, actually, and it was the perfect thing to do on his second birthday.
After that, my wife and I ate the cupcakes that D wouldn’t touch.
Baby brother was born!
If D could perform a heavily sarcastic slow clap, it would undoubtedly be here. While it was an incredibly joyous occasion for the rest of us, I believe D maintains that this is the point his life was over.
It was a whirlwind couple days getting S in to the world as he decided to arrive a bit early. Our finely laid plans for his delivery were put to rest and thankfully five different baby sitters were able to come help with D. I also work with some great people who stepped up to cover me earlier than anticipated.
My wife and baby S nearly didn’t make it through the ordeal and due to me not being able to get my shoe cover things on my feet, I got some sort of human tissue stuck in the tread of my shoe for a while.
When it was all said and done we finally brought S home and D’s initial reaction wasn’t much of one. He was definitely happy to see mommy (I had been home a couple times already so I was old news) but really couldn’t care less about baby.
And then baby brother made a sound. I don’t remember if it was crying or sighing…or farting or yawning. It doesn’t matter. D reacted the same to all of it. He flipped out any time S made any sound and he did this for more than a year.
This created a very unique and challenging dynamic in our house for a long time. We had to find a way to keep S quiet so D would stay at least somewhat regulated so he would eat and sleep and be happy and productive while still trying to allow baby S some opportunity to figure out some things on his own. If we let him cry it out, D would be off for literally days after and the backlash from that would come in multiple facets.
• 2016 •
Music therapy at Fraser was discontinued. This was a bummer not so much for our sake (D kind of stopped having fun in music therapy. Maybe he was overloaded, overworked or some other unknown factor.) but for all the rest of the kids that the program served.
We decided to buy a house. For quite some time our plan had actually been to move to Florida! We found ourselves drawn there for multiple reasons. Due to several factors, we decided to stay in Minnesota.
I had been trying to get in touch with multiple autism and special needs based centers in the area of Florida we were going to move for quite some time. I initially wanted to find out what they offered for a kid like ours, what their wait list was like, protocol for transferring from out of state, insurance needs and the list goes on. I never got to ask any of these questions, however, because literally none of the places I’d contacted followed up with me even after multiple attempts.
That was a big factor in continuing our Minnesota residency.
• 2017 •
We bought a house! Through having an incredible mortgage broker and real estate agent, our search for a house was quick and smooth in an otherwise difficult market. We ended up in a fantastic school district, in a neighborhood that met all of our prerequisites and is close and conveniently located to everything we need. We got luckier than we ever imagined we could.
A lifetime of thank yous to the people who helped us accomplish that!
Moving from our prior residence to our new was an adventure. My wife stayed with the boys in a hotel room while I moved with the movers we hired. It took just over 34,000 steps and 180 flights of stairs according to my phone. Waiting over six hours for Comcast to install a new line to the house gave me an opportunity to unpack the boys’ belongings so when they came home all their crap would be there, ready for them to play with.
The hotel stay got a little dicey with the boys but when it was all said and done, they actually adjusted to our new home incredibly quickly. D came home to his toys and his room pretty similar to how we had things set up before we moved. Looking back on it, I’d go so far as to say that that it was no big deal.
We began our meetings with our new school district. Through this process D added an educational autism diagnosis to his arsenal of diagnoses. As of writing this, we are still in the process of wrapping up all our initial meetings to find out where and when he will fit in best within the programs they offer.
• 2018 •
We were approved to begin fostering dogs for Can Do Canines. D has been on the wait list for an autism assist dog for coming up on a year. We figured that a good way to begin introducing dogs to our boys would be to do short term fostering. We have a little paperwork to fill out and a couple classes to attend and then we’ll be ready to begin taking in dogs!
D began full time ABA therapy!