When Connor was first diagnosed with autism, figuring out which component of his care was the most critical for his success presented a challenge. Despite wanting to give our son the world, there are only so many hours in a day and so many dollars in the bank. We have done private speech therapy, in-home ABA therapy, adaptive swim, music therapy camp, adaptive baseball, integrated play groups and social skills programs. I am sure there are other things I cannot even think of off of the top of my head, but needless to say, if we found an intervention that we thought would help Connor we always gave it a shot.
However, as Connor got older, I quickly realized that no matter how much money or time we spent on outside therapies, we could never accumulate as many as hours and resources per day as he had available at school. Spending 7 hours a day at school (8:30-3:30) versus the 4-5 hours we had at home which have to include dinner, bath and bedtime; made it obvious that a large portion of my son’s success was going to depend on the interventions that he received at school, so I dove head-first into learning about his educational rights and his very unique and specific needs.
Let me preface this by saying that our public school district has been victim to outrageously high levels of administrative turnover (at least 7 Directors of Student Services and 5 Superintendents in the 5 years Connor has been in public school) as well as lack of appropriate funding for special education (we are currently on another budget freeze). Couple these large scale issues with other smaller issues and you quickly realize why there have been pervasive problems within special education. To make a long story short, you can have great teachers, related resource providers and paraprofessionals available and you will still need appropriate funding, resources, on-going training, and administrative support to create successful special education programs. Without every piece of the puzzle, it just doesn’t work.
After discovering the depths of the issues impacting my child’s education, I started exercising my right to call PPT’s to address my concerns rather than waiting for his scheduled annual reviews; his first couple years in pre-k we had more meetings than I can count. I went to the newspaper and got involved with an investigative journalist who was interested in looking into the issues within special education in my district and used that as a platform to highlight the need for change. I started TAFA as an autism parents support group to connect with other parents in the community. I spoke at Board of Education and City Council meetings and found any community events related to individuals with special needs that I could attend. I discovered my right to file a complaint with the state Department of Education when my son’s IEP was being mishandled, and to always ask for Prior Written Notice after leaving a PPT where I had requested a change to his IEP. I learned to record PPT meetings to ensure that everything was covered and to be able to listen back if I needed to. I learned to always come prepared with data and evaluations to back my requests, but, most importantly, I learned that despite being at a table with a handful of people with more advanced degrees than my own, I was a valuable member of that PPT team because I am Connor’s mother.
During Connor’s pre-k years we fought for and were granted a 1:1 BCBA, an extended school day, and eventually outplacement to a private school for autism at age 5. Outplacement was the best choice for us at that time, we saw firsthand how the availability of autism-specific resources, the intensity and level of intervention was crucial to Connor’s success. He was talking more and self-stimming less, he potty-trained, he completely stopped mouthing items and no longer exhibited pica and his behavioral issues like elopement had significantly decreased. However, after 3 years in an outplacement and with serious consideration, we requested that Connor transition back to public school. It was a very hard decision to make, one that we only made after ensuring that all appropriate and necessary resources were in place for the transition; a decision that we made when we took a long hard look at life-long goals for Connor. A decision that we made knowing that we would have to work diligently alongside staff to address long-term issues with special education programming in our district. We wanted him to have access to typical peers for social modelling, functional communication and learning appropriate social behavior. Also, we wanted him to be educated in the community where he lives, enabling his peers to become better allies and advocates for him when he enters the work force and adulthood. We felt that inclusion in public school was mutually beneficial for Connor and his peers, allowing the other students to see how valuable it is to get to know those who are different and to decrease stigmatized beliefs surrounding autism.
We have seen the benefits of both public education and outplacement firsthand. There are pros and cons to each, and every single child has unique needs that have to be considered when choosing an educational placement. These are some of the toughest decisions to make and require constant vigilance to ensure efficacy. My heart goes out to every parent who has been in our shoes, who dreads PPT’s, who is fighting with every ounce of conviction they have, who loves their child beyond the confines of academic placements, evaluations and ratings scales. Navigating the world of special education is not for the faint of heart, just know that you are not alone.
With every major change to Connor’s education, with every huge life-changing decision, there have been times where we have lost sleep, lost hope, lost faith and to be honest, probably even lost a bit of our sanity to worry and despair. We cannot guarantee that what works one month or one year will even work the next, but we can guarantee that through it all, we will be right there beside our child, exercising his rights to an appropriate education and fighting for him every single step of the way; because he is worth fighting for.
Autism is like a vast ocean. You can’t help but gaze out in awe at its wondrous, overwhelming complexity while simultaneously contemplating its depths, its intricacies and what secrets lie below the surface that we haven’t even yet begun exposing. The hard parts of autism, often come like unrelenting ocean waves that can at times take your breath away. Usually a decrease in one difficulty gives rise to an increase in another, or perhaps it’s that once our children start progressing in one area, we choose to hyper-focus on another right away; either way, it seems like there is always at least one all-consuming difficult need at any given point in time.
For me, today, the prevailing difficulty is sleep. I have not slept well in a year and a half. Connor and I had the flu together a year and half ago and spent one week quarantined in the same room and since then, he has not gone back to sleeping in his own room or bed. This would not be so bad if my teeny tiny child didn’t sleep like a shark on a sugar high! He kicks, rolls, throws off the blankets and occasionally wakes up at completely unacceptable hours with the full intention of being awake for the day sometimes with accompanying requests for totally insane items like “green soda” (Sprite). We have tried all different types of reasoning and incentives to get him back into his room from re-decorating the entire room and moving the furniture, to offering rewards and tokens for time spent in his room. No matter what tactics we have tried, we cannot get him to spend an entire night sleeping in his bed.
Last night was one of his particularly difficult nights, where for whatever reason, he did not even fall asleep until after 11 PM after several requests to turn the fan on and off, to take off the blankets, to get a drink, for tickles, for hugs, etc. etc. It is on these nights where I miss being able to sleep with just my husband and not having to worry about Connor all night long. I laid there without showering, brushing my teeth or washing my face, feeling completely defeated and exhausted both physically and emotionally; wondering if I would ever get my child to go back to sleeping his bed, feeling guilty about how many nights I have had to sleep with my child over my husband, racking my brain for any type of reinforcement or environmental change I may have overlooked to get Connor back into his own room.
It took me until well after midnight to finally fall asleep myself only for Connor to wake up for the day at 4:30 AM. Now this was an exceptionally hard night for him, while he does require my presence to fall asleep each night, it is very uncommon that it takes him so long to fall asleep and that he also wakes up so early. Needless to say, when he got up at 4:30 I could hardly prop my eyes open. For a little bit, I allowed myself to lay there not ready to get up and start the morning routine just yet. Connor on the other hand was gung-ho to start his day and immediately started requesting “Momma’s hand” “get up” “tickles” “down stairs”, and anything else he could think of to get his point across that he was ready to get up and I better rise to the occasion. I went through the motions of the morning routine, prompting him to use the bathroom, pick out his clothes, ask him what he wants for breakfast, turn on PBS kids cartoons. Somewhere in the middle of the over-familiar mundane routine and my own wallowing sleep-deprived self pity, it hit me that I wasn't focusing on the positive. I was allowing the waves of despair to take me under. It really hit me when Connor came to me and said “It’s stuck” and when I asked “What’s stuck?” he responded back by saying “mouth” and pointing to his a tooth in the back of his mouth, and sure enough there was a piece of food stuck in his tooth. This trivial revelation that would so often be overlooked by others, stopped me in my tracks and bought tears to my eyes.
My son was using the contraction it’s! He was advocating for something that was bothering him and initiating a very specific request for help using the word stuck! When asked what was stuck he went even further to use both the verbalization “mouth” and a pointing gesture to further reiterate his needs! As the mother of a once non-verbal child whose greatest fear was how my son would get through life without any functional communication, a momma who has used PECS (a picture exchange communication system) to understand my child’s wants and needs, who has fought for two different AAC (augmentative and alternative communication) evaluations and ended up using two different AAC programs over the course of the past 4 years, a mom who didn't know if I would ever hear my child’s voice or if I would only be able to communicate through tablets and technology; this moment of my child asking for me to help him with food stuck in his tooth stopped me in my tracks. Years ago this very type of issue would have likely ended in both him and I crying out of frustration when he couldn't convey what was wrong and/ or I couldn't guess.
When I took it all in, it truly hit me how far my child has come and how lucky I am to hear his voice at all. I thought of how on this very same morning he had said “No, I don’t want waffle” when I asked him if he wanted his waffle and how lately when he's looking for our cats to play with at home he says “I want kitty cat Fargo, Where is she?”
I let go of my fatigue-induced misery and instead chose to really focus on all of Connor’s progress lately and ,just like that, it instantly shifted the mood for my entire day. I will give myself extra coffee and extra grace today and even though I am still very tired, and still searching for ideas and solutions to get my child to sleep in his own room; I will not hyper-focus all of my energy into that wave trying to crush me. I will keep my head up looking towards the horizon and focusing on the sun coming up over the possibilities that each day brings, even if it’s something as small as my child telling me that he has food stuck in his tooth.
I am sure that if you have found our site, you either know or love someone with autism, have somehow been impacted by autism and/ or you support our mission. Whatever it is that led you to our page, you are most likely curious as to what TAFA is and how we got started. My name is Christina Augliera and my younger son, Connor, is diagnosed with autism. Before Connor's diagnosis, I graduated with my Bachelors in Psychology from Central Connecticut State University with the intention of getting into the field of Child Psychology. My first job after graduating was as an ABA Therapist for the Institute of Professional Practice (IPP) where I had my first experiences working in ABA (applied behavioral analysis) with pre-school and elementary aged children on the autism spectrum, and I quickly fell in love with the work. About 2 years into my time with IPP, Connor was diagnosed and I got to see firsthand just how hard it was to navigate the world of autism from a parent perspective. I left my job in order to maximize in-home service hours with Birth to Three and I took a second shift position as a Residential Counselor for adults impacted with both intellectual disabilities and psychiatric disorders. The most challenging facet of handling a newly diagnosed child was the plethora of information out there. I would sit up every night googling anything I could think of only to find myself falling further down that never-ending metaphorical rabbit hole. Instead of finding comfort and solace in my late-night research, I would be left feeling more confused, more alone and more scared about how to handle the financial, scheduling, insurance, and availability of service constraints that I was facing. I failed to realize that having insurance did not mean you were automatically covered for autism specific services despite living in a state that "upholds the autism mandate", there's this tricky little loop hole called "self-funded insurance plans". I was also a 25 year old mother of two children taking a major pay cut to work off-shift hours to receive the services I was guaranteed through Birth to Three meaning the financial burden on my family was huge. In addition, I also faced the harsh reality that even if every report says your child needs 25-40 hours per week of intensive ABA, it is not a guarantee if the availability of services in your geographical area is minimal. The hours on the phone, filling out paperwork, searching for what I could do to help my son all meant time away from my husband and my older child who is neurotypical. Needless to say, I felt like I was on the starting line for a marathon that I had never trained for; worn down and depleted before the race even began. Friends and family with typical children would empathize but could never truly understand what I was going through. I needed a village, I longed for support from people who really got it; the ones who were in the trenches alongside me and really knew what it meant to be struggling to get your child to speak, potty train, answer to his name and make eye contact. This desperation for an outlet is how TAFA was born. We began as a support group in partnership with The Arc of Litchfield County (LARC) and just this past year we became our own non-profit. Our mission is to unite parents who share the commonality of raising a child on the spectrum in order for them to share experiences, resources, ideas, and struggles in a place where everyone truly understands. We also want to increase awareness in our community for those effected by autism because we truly believe that the greatest tool is knowledge and the more that we can educate our community on autism, the better allies and advocates they can be for our loved ones on the spectrum. To create tangible changes in the world around us, it truly takes a village, and TAFA is our village. We hope that you will join us!