Early Intervention, Early Intervention, Early Intervention! … We have all heard this. Immediately after Gooli’s diagnosis, the Developmental Pediatrician suggested we take some time to let the diagnosis “settle” and to give her a call when we were ready to talk first steps. In a very uncharacteristic moment (I’m paralyzingly shy/accommodating/deferential- a theme that you’ll hear about time and time again), I firmly said “no! we need to set up intervention right now!”. The doctor spent some additional time with us, becoming more and more visibly frazzled as the minutes went on and the phone rang time and time again. She ultimately apologized for not having the time to finalize details during that visit (turns out she was not scheduled to meet with us for quite so long, I’d estimate under an hour in total, and was now very behind on her schedule). I left her office with a blanket referral for ABA/Early Intervention services (I insisted on this), and did all of the heavy lifting myself! This is another place in our journey were my studies and profession were helpful. I had helped countless clients navigate insurance coverage and referrals in the past… I just had to channel that knowledge. I can’t describe how difficult this was! Suddenly, when my family was the one in need of services, the system that has always been “challenging” seemed to be IMPOSSIBLE. In retrospect I realize that finding Gooli the “best” Early Intervention, as quickly as possible, was very emotionally loaded for me. I was fighting cycles of denial and guilt (for not having pushed for diagnosis sooner… I had LOST weeks and months of potential Early Intervention! Back then, it felt like these days/weeks/months could make all of the difference and I had cost Gooli something I could never get back!

Still frazzled, I did all of the research I could do on different treatment options- ABA, floor time, etc. Being in California at the time, there was a great deal of buzz around the Early Start Denver Model (ESDM). Beyond data and research, like many parents I’ve spoken to since, I was “sold” by the videos they use to promote the model. You may have come across these. They show children with visible symptoms (no eye contact, tantrums, etc.), and later show these children a few years later– “losing the diagnosis”. The images show children walking hand in hand with their parents into mainstream kindergarten, etc. I admit that the promise that this treatment could lead to Gooli having a more typical childhood moved me to gravitate towards this treatment first.

Finding a certified ESDM provider…. that was the challenge. The training center offers a directory of professionals who have completed their certification. We had only one such provider within 50 miles of our home (48 miles to be exact). We connected with them and were THRILLED that we could schedule an appointment within a few weeks (other providers seemed to have much longer waiting times). We took the first time slot they could offer us, and committed to driving Gooli 48 miles each way to treatment Monday-Friday. The services were entirely in-clinic. After an initial interview and evaluation of Gooli, treatment goals were determined (I’m still not sure what these goals meant, they used wording that I didn’t understand yet). Gooli attended the center for approximately 3 months. During that time, his providers changed multiple times, he did not seem happy going into the clinic, and most disappointing to me– I never met the certified ESDM provider (despite my insisting on it). At this clinic, the certified ESDM provider was the owner of the company. The hands on work was left to therapists, who were supervised by a “senior therapist”, who was supervised by another supervisor, and so on. I’m not sure Gooli ever really received the ESDM. You’d think that this treatment episode ended in 3 months because our family pulled Gooli from the clinic. I wish we had done this, but in full transparency, we had no idea how bad this place was until we had different experiences… I try to practice self compassion and remind myself that we had no experience. His treatment with this center ultimately ended abruptly when they notified us (and all of the staff), on a Friday at 4:55pm, that the company was filing for bankruptcy and closing… we should not expect sessions on the following Monday. wow.

*an important disclaimer here- this is just OUR experience attempting to connect to an ESDM provider. It is in no way a criticism of the model or its providers*

Following this experience, we connected to an ABA agency much closer to home (3 miles). We were assigned this company by our insurance company and accepted placement because they were able to accommodate us the soonest. Gooli was without services for 2 months. We remained with this agency until our cross country move (from age 2.5 until 5). We built up to over 30 hours of services per week of ABA, and added 2 hours of Speech Therapy and 1 hour of Occupational Therapy.

I learned from working with this same agency for a number of years that… therapist turnover is unavoidable (there are many structural reasons for this, that I’ll get into some other time), the therapists’ connection to Gooli made all of the difference in treatment efficacy (more than years of experience, background training, etc.), the supervisor is EVERYTHING. We were incredibly fortunate to be assigned a BCBA supervisor who was just phenomenal. She did this work as her calling and we felt she got to know Gooli and always worked tirelessly to make sure he got the very best treatment possible. We did not know what we had until we lost it. Gooli’s progress blossomed under her watch. This amazing supervisor was with us for the majority of our time with this agency (2 years). A few months prior to our cross country move, she moved. We were devastated, as she had been the constant factor in Gooli’s treatment team, responsible for recruiting/training/welcoming rotating therapists. We did not fully appreciate how fortunate we were to work with this supervisor, until after her departure. We have been assigned three different supervisors. Some have been terrible (never accepting requests to meet with us as parents, mis-managing logistics and negatively impacting continuity of treatment, etc.), most have been “fine” (I miss the star supervisor we once had), updating us on staffing changes, etc.

Most recently, when we moved cross-country, we attempted to continue with services a few hours per week (3 vs. 30) remotely. The ABA company had implemented telehealth visits in response to the COVID19 pandemic. This DID NOT work for Gooli. He seemed to only become irritated/agitated by the attempts to do remote sessions, making no progress and then setting him up for a difficult rest of the day. We discontinued services and connected with a local agency. We began ABA for 15 hours per week and ultimately increased this time to 30 hours per week. Gooli “attends” remote learning PreK while in ABA session. This overlap has been a sanity saver for our family! It essentially results in a patient ABA therapist sitting with Gooli 1:1 working through his school day. We feel fortunate to be able to access this help.

I feel the need to say here– we’ve never rigidly adhered to the ABA model. We have used it to help understand motivation, to reinforce the types of behaviors we wanted to see more of, and to help Gooli with things like building patience, attention, flexibility, and language (I plan to write more about the specific strategies that seem to have helped Gooli the most). As a family, we gravitated more towards a “joining” approach and towards prioritizing connection with Gooli (we have been following our intuition, but I’ve recently become interested in writings about the SonRise model- which seems to suggest a similar approach… I’ll write more about my thoughts on the model elsewhere).

Looking into the future, we anticipate continuing 30 hours of ABA throughout summer (2021). In the Fall, Gooli will be starting Kindergarten. … We are still unsure if he will be attending the public school or a private school (much more about this in the current goals + approaches section). Depending on the school setting, we may choose to continue having ABA sessions in the afternoons, or could possibly be taking a break from ABA. As a final insight, we have found that there is certainly a cost/benefit to ABA hours– we have consistently tried to balance ABA hours with quality family time (not accepting extra session on the weekend, no session during holidays and family birthdays, and ending session by 4pm each day to allow for unwinding snuggle time on the couch). Gooli seems to benefit as much, if not more, from the qualify family time than from the structured intervention.

— I limited myself to discussing more traditional “interventions” here, but see the “diet”, “supplements”, and “current goals + approaches” sections for other forms of intervention.