Guest post: Our New Reality with an ASD Child
Setting Sail in our New Reality with an ASD Child
By Little K’s Papa & Mama
Meet Little K. In June, our tiny tot was diagnosed with ASD two months short of turning two years old. Naturally, the diagnosis had a major impact on our lives, on whatever plans we had sketched for our future, and, more particularly, on our daily routines. From dealing with the overwhelming amount of action items (let alone the accompanying information) to adjusting even the tiniest detail of how we run our lives in a given day, we were somehow absorbed by this uncanny spectrum that, statistically speaking, chose to land on us.
Diagnosis. Impact. Plan
A few months prior to the diagnosis, Mama had noticed Little K was visibly different from her peers. She would run around uncontrollably. She would ignore the presence of others in the room. She would sit and focus on a specific activity for prolonged periods of time. She would ignore her Mama’s voice, especially when Mama called her name. She would not make any eye contact. Understandably, Mama’s worry intensified to the point where we sought professional help.
The multidisciplinary diagnostic process lasted a month. Little K went through a speech, cognitive, and pediatric assessment. When the lead pediatrician broke the news to us that, with high confidence, Little K is on the spectrum, we experienced a brief moment of relief. Because, after all, it is good to know. But once that moment passed and once we learned that Little K would require intensive early intervention (which translates to at least 20 hours per week), an overwhelming sensation invaded and pervaded our lives, a sensation that would last for the first two weeks post-diagnosis.
During those two weeks, we first tried to made sense of the new reality. We started corralling any information – digital or printed – we could find on autism. We ordered a few books. We subscribed to online magazines, including research journals. We were working to introduce order in our information-overloaded minds, admixed with the worries and hastiness to assemble a professional intervention team.
The most important next step, we learned, was finding and interviewing professionals to help treat Little K. Little did we know that the team consisted of several critical roles: behavioral consultant (BC), behavioral interventionists (BI), speech & language pathologist (SLP) to name a few. We began with referrals from the diagnostic team. They gave us a few names, whom we contacted right away. They were not accepting new clients.
We moved on to the government’s sanctioned list of qualified professionals and started calling everyone on the list – we probably made thirty calls in addition to emails we sent out, only to hear back from six individuals. Of those, one was an SLP and the other five BCs.
Since we had no choice for the SLP, we decided to give them a try. We scheduled our first session. That helped with our positivity. But we had to interview the five BCs. We had to play around with our work agenda and factor in these strange times of an unwanted pandemic in order to fit those interviews into our schedules. We were able to go through the interviews in a matter of days and finally decided to hire a BC that checked our criteria, ranging from logistics to our perception of the interviewee.
With a team in place, we had sufficient information to start compiling a dynamic five-year plan with our own goals and expectations for each year. Some of the immediate goals we’ve set are:
Help Little K to develop reasoning skills in social situations
Help Little K to catch up with speech & language
Develop play skills for Little K’s interaction and communication
Start Little K’s potty-training (we’re noticing some readiness there)
Train ourselves in behavior intervention and autism (we’ve already registered for two courses at a local college), given the intensive nature of early intervention Little K requires.
Play. Eat. Sleep
A day in the life of an autistic toddler resembles no other day we’ve lived before; nor does it resemble anybody else’s day. The maxim in the ASD world that no two autistic individuals are alike extends and applies to the daily routine as well.
Little K sleeps well at night, about nine hours. However, she wakes up at around 5 AM. Every single day, no matter how much we try to hack her biological clock. As such, we start our mornings really early, but not with some form of mediation. Rather, we start actively playing with our daughter – after all, she’s had a good, relatively full sleep, so why not.
An hour into the play, we prepare breakfast. Little K likes grazing on the food assortment while running around finding items to play with or skimming through her favorite books. For some reason, which is likely due to routine, she won’t sit on the dining table for breakfast – she is fine and happy to sit for the remaining meals.
After breakfast, Little K enjoys playing more. At around 9 AM, we like taking her out for 2-3 hours. She loves the swing, so we go to different playgrounds, where we meet up with other families. That informal intervention, we have been told, helps in a way with Little K’s social and emotional behavior. Yet, at the playground, Little K will focus on a specific activity and will mostly ignore her neurotypical peers. She will not smile at or engage with other toddlers or parents who call her name. The behavior between the two “neurotribes” – one being autistic and the other not – is, as it were, a stark contrast. We observe that even more than parents of neurotypical kids, and we often feel emotional due to the fact that Little K is so different and seemingly disconnected, even though she must want to try to be like the rest.
After returning home, Little K will have lunch at around noon. She eats and drinks very well. We offer her all sorts of healthy food and, most importantly, flexibility not only in variety but also in choosing what to eat during a given meal. We were told that flexibility is golden, so we continue investing in it. After about 30-40 minutes of eating lunch, it’s time for her nap.
Little K will nap for 1-2 hours, but never in her crib. She will either sleep on our bed, or in Papa’s arms. We have tried to nap-train her like we did with her night-time sleep, to no avail. We are, nonetheless, very happy Little K gets to nap, for such an early bird that she is. Upon waking up, we offer her plenty of water – she likes coconut water (no added sugar) and lemon water more than plain water – and healthy snacks (usually fruits). As we continue playing with her and applying behavioral techniques we are learning from our BC, we prep her for bathing and dinner.
Little K spends up to 15 minutes in the bathtub – she generally likes being in the water. We offer a few toys in there, as well as foam letters of the alphabet and numbers, which she points at intermittently and recognizes a few. Once out of the bathtub, we cook dinner and we dine together. Little K enjoys browsing several books while dining and interacting with Mama and Papa, sometimes offering us food from her plate. We have noticed she’s been increasing the rate of eye contact with us during dinner time – we are told that’s a positive development. Dinnertime is generally a bliss in the sense that we know Little K has had a great day, in her neurodiverse way, and will be sleeping soon, which will give us time to ourselves.
The New Reality
Little K is obviously oblivious to the new reality. She will be for quite a while. But what we, her parents, have come to terms with is the challenging and intense way of adjusting and living our lives as guided by Little K’s mysterious mind. We know of no other way of living – we had assumed most other parents had been going through what we experienced.
But that isn’t really the case. Most other parents we meet up with in playgroups appear to be living a more relaxed life, one where they see no need to constantly micromanage their neurotypical tot. Yet, Mama and Papa have become excellent micromanagers.
We are proud of that achievement and we look forward to sailing with Little K through the vast ocean of life.
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