If I had to name the two things that are absolutely critical to navigating the spectrum, it would be the willingness to learn and an ability to manage relationships effectively. This topic has been on my mind a lot lately as I have thought about where we started, where we have been, and where we are going with this journey.
Most people discover their children’s autism in the early pre-K years where they may or may not have the teacher interaction, depending on when they decide to start their child in school. So the first conversations are usually with therapists and physicians that are part of the discovery and diagnosis of the issues at hand.
In the beginning, you are a little shell-shocked, confused, and unsure of what is going on and what it all means. I work in the bond markets, and one of my first bosses gave me a great piece of advice about my career. He said, “You have to be a student of the business.” I have been in the markets for 18 years now, and I am still learning, getting better, and growing in my base of knowledge. I’ll always be a student of the business.
I treat parenting on the spectrum no differently – I am a student of the spectrum. From the get-go, I set out to learn as much as I could about the kinds of symptoms we were experiencing with Jim. As you know now, that list changed every few months. Welcome to the ASD crash course/roller coaster. I asked lots of questions of our speech therapists, worked on things at home, and tried to give feedback to the therapists that I thought might be helpful. I read. First, I read about Sensory Processing Disorder, then about Autism. Later we would add Occupational Therapists to the roster, and then an ABA therapist. ABA is its own behemoth of a topic, but it’s also incredibly effective and worth the work to understand it.
Through all of the appointments, conferences, and homework assignments (homework for me, not Jim), I was and still am a student. I did a whole lot of listening. I did a whole lot of asking questions. And after that, I did a whole lot of watching and learning about my son. You see, none of that knowledge and experience means anything if you do not meaningfully apply it to your child’s situation and your relationship with them. You can list of symptoms, therapies, and disciplines all you want, but at the end of the day, you strive for the understanding so you can understand how to help them and build a better relationship with them.
My business is about building relationships…relationships with my clients, my traders, my analysts, my assistant, my co-workers, and my management. As a parent, I have to build relationships with my child’s therapists and teachers. That process can be tough some days. Therapists do not always have good news for you, and the good news can be tempered by new goals that will present new challenges. The bad days are bad, and the good days are really good. You share in both and move forward whatever kind of day it is.
We are really lucky in that we have been blessed with some really awesome therapists along the way. That does not mean that we have not had disagreements, tense discussions, etc. Like any relationship, we have had those moments, but we grew from them. One key distinction you should remember is that as the parent, you are the expert on your child. Your therapist is the expert on treating your child’s condition. They definitely get to know your child over time, and they can certainly become the expert on the child in their environment. Here’s the part that is really important for achieving goals and success: the experts have to work together. It’s a symbiotic relationship. Without a doubt, at least some of the progress we have notched has come from the exchange of information between us and our therapists. I am in regular contact with our therapists, and they are in regular contact with me. The effect is a holistic approach to our treatment plan. We are all on the same page and working for the same goals. If you do not conduct a regular dialogue with your therapists and/or teachers, I highly encourage you to do so.
Recently, I raised my hand to say that I’d noticed an uptick in sensory behaviors at home, and we needed to retool what we were doing. They were not seeing the exact same behaviors at school, but they had seen some behaviors that I felt like were in response to stressors (new school year, new teacher, new expectations, etc.). I felt like it all was related, but we needed to change what we were doing to help him. We exchanged feedback and ideas, and we started to see improvement.
We have had mixed experiences on the teacher front. I attribute it in part to a lack of training and education on Autism, ADHD, and other special needs. The default in many schools seems to be to separate these students from the main classroom as opposed to having an inclusive model. This is an issue for high functioning kids on the spectrum as they are in many cases capable of participating in the classroom, but need breaks or some assistance periodically. The inclusion is beneficial in encouraging academic confidence, assimilation into the school community, and forming social relationships with their peers. If they are segregated, they begin to perceive themselves as different, and that can also have detrimental effects academically and socially.
I hope to see more training for the mainstream teachers so that hopefully they can feel more equipped to work effectively with their special needs students. In the meantime, it’s an annual assessment process as a parent to determine how engaged the teacher will be. At the end of the day, the buck stops with you the parent to make sure your child is getting everything he or she needs to excel to their full potential. Communication is key, and as we continue to grow into the mainstream classroom, our teachers are and will be an even more critical part of our success.
It can be like drinking from a firehose at first. I have had plenty of moments where I just couldn’t think on it anymore. With that said, our progress in the last few years is evidence that an intensive, cooperative intervention works, and all the work is more than worth it.
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