Updated: Feb 26, 2020
As mentioned in my previous post, there are some things that I need to write about here so that I don't try to explain it to potential friends and scare them off. Better to make sense of all of this in written form, semi-anonymously, and with the possibility that the process will create positive externalities like making my husband laugh or helping fellow-SPD parents get through the day and realize they are aren't actually crazy.
Before we begin, let me provide a disclaimer. I am, at my very core, a nerd and an academic and I like to understand the basic epistemological premise for everything. Meaning, I like to think about how I know what is "true" in the world and based on what assumptions. Overall, I am more of an empirical gal, rather than one who is driven purely by theoretical or normative arguments. I believe more of what I can observe with my own two eyes, than what a mathematical or logical model would predict. I am also less swayed by pure philosophical debates, because in the end, the proof is in the pudding. On the one hand, I am too practical to be a "pure" academic. On the other, I can be an annoying practitioner - and parents are the ultimate practitioners - because more than the average bear, I want to understand the root cause, the structural conditions, the "why" behind it all.
If you are someone who gives zero shits about the "why" and the overarching approach to something, but rather want to jump right to practical next steps, feel free to skim to the bold words phrases in the post. I will write other posts that are more practical and explain the nuts and bolts of what some of this has meant for our family in practice. For the rest of you, fellow travelers, feel free to proceed. No judgement either way. This is the land of individual differences, after all.
The approach we are using to help our son is firmly grounded in the DIR-Model pioneered by Stanley Greenspan and Serena Weider. This model was created to address behavioral challenges and delays faced by children with Autism Spectrum Disorders and other developmental challenges. D-I-R stands for "Developmental, Individual-differences, and Relationship-based" Ok, you ask, So what does that mean for parents who aren't specialists in this stuff? From my laymom's perspective, it means three things:
When parenting a kid, you meet her exactly where she is in terms of her development, instead of trying to force her to "catch up" with skills that are expected for average or typical kids that share her biological age.
Before we realized that T had SPD, I made lots of incorrect assumptions about what skills T was capable of based on what his peers where doing. T's development over time has been uneven (meaning he is advancing in some ways, but not in others) and thus confusing. While he was highly verbal and had an above-average vocabulary by four years old, his gross motor planning (building, sorting, organizing, executing ideas using his body) was very delayed due to sensory processing issues. (Personally, I had no idea that developmental trajectories could look so different within the same child).
The incorrect assumption that because T could speak articulately about certain things he should also be able to master other skill sets that are typical for his age, led me to ask him to do things that he simply was not capable of and hadn't learned yet. And I interpreted his resistance as defiance and his despair as deliberate misbehavior. This cycle of disconnect led to power struggles, huge meltdowns, punitive measures, and eventually, his hair-trigger fight or flight response to the seemingly simple things I had expected of him. Ultimately it was detrimental to his self-confidence and trust in me as an attuned parent, as well as our relationship and the strength of our attachment.
Let me give you an example: picking up toys. Before learning about all this DIR stuff, my approach was very black and white. Pick up your toys because I asked you to. Full stop. When we would play with Legos or Play-doh and I would need to make dinner, I would ask him to "clean up" like we saw other four-and-a-half-year-olds do with no problem. He would then sit there without cleaning - fussing, whining, pushing toys away. In response, we would use a numeric countdown method which would spark his intensifying resistance and would end in a time out. Then things would really escalate. He would scream, thrash, throw things and when the time was up, he had not calmed down or gotten any closer to cleaning up. Rather, we had just begun a full-scale, panic attack and violent meltdown. And sometime around minute 30, he would tell us he "couldn't stop crying" so we would help his body calm down, and then help clean up the toys with him while he sobbed. Not exactly a feel-good scenario here.
What I didn't realize at the time was that he wasn't deliberately trying to be willful, he simply didn't have the gross motor planning skills to execute the task. The solution? Help him clean up and break the task down into smaller, digestible bits. Ask which part he wants to clean - Do you want to clean up the square magnet tiles or triangle magnet tiles? It's not rocket science, but I had no idea how to do this or that it was even necessary. This was not a magic bullet, it was one small puzzle piece in the larger developmental picture and part of rebuilding the relationship when we did a 180 with our parenting approach. Something I will someday, somehow, write about.
The literal definition is the "part of the Model that describes the unique biologically-based ways each child takes in, regulates and responds to, and comprehends sensations such as sound and touch, and plans and sequences actions and ideas".
From a mom's perspective this seems to be a politically correct way of saying "special needs" that are in the cognitive and neurological realm, rather than the physical disabilities genre, like being blind or being in a wheelchair. As a side-note, I am happy to be schooled and corrected on this by all the experts out there. This phrase refers to the challenges that come from ADHD, Autism spectrum disorders, developmental delays, and sensory processing disorders, or a unique cocktail of the aforementioned diagnoses. I think the point is that "individual differences" as a term is trying to broaden and generalize the approach beyond a particular diagnosis, especially since each of these different "categories" that kids can fall into exist on a spectrum, often coexist with one another, and the behaviors they produce overlap one another.
So the key to this aspect of the approach is that it is premised on the relationship between the therapist and child and/or parent (or caregiver) and the child. This means that when I take T to therapy, I am not dropping him off to learn things like handwriting and postural control, while I wait outside in the waiting room. Rather, I am on my hands and knees engaging actively in play scenarios, swinging him in the enormous Lycra cocoon hammock swing that he would live in if he could, and throwing padded blocks at him while he protects himself with a shield. We are singing songs and cheering him on and if I look away, he immediately locks his eyes on me and says, "mama, look at me". Forget about checking emails, I can't even look out the window.
This is an important component because it means that the therapist has to build real trust with and understanding of the child, and with you, because you are there in the room, working together as a team. It also means, that there is no "fix" for the child (like taking him to the doctor for a prescription) that doesn't involve you and the two-way relationship that is the very foundation for things like attunement, the child's visceral feelings of safety and attachment. When I started doing the work with T, I remember thinking that this was kind of a bummer, because do you really need one more thing on your plate as a parent of a differently wired kid?
Here are the reasons I like this model:
It digs down to the root cause of what is driving the behavior, rather than focusing solely on getting rid of specific behaviors in the short term. The behaviors will change over time as a result of addressing the underlying cause.
It is relationship-based, meaning you are involved every step of the way as a parent in the therapy itself. In fact, I feel like you are actually part of the therapy in many ways, as both a participant and a recipient.
It is less focused on a particular diagnosis and in fact, it seems like a really good way to treat and raise kids even if they are neuro-typical. I wish someone had explicitly taught me this stuff five years ago.
Here are the reasons this model is hard:
It takes a long time to be effective. This is the long, slow roll. For example, my occupational therapist told me that T's feeding therapy would take between 1-2 years.
It takes a lot of your time and is hard work. (Again, you don't drop your kid off and then come back in an hour, which is what I was envisioning when I first started searching for occupational therapists). We also do a lot of stuff at home. It all takes a lot of time and effort and patience and faith in the process.
There is less empirical evidence to support its effectiveness. So this last point doesn't bother me as much as one might expect. Because DIR is so individually-tailored to the specific child to help her developmental trajectory and relationships, it is hard to measure specific concrete outcomes that are standardized across a large sample of cases (kids). There also isn't a single standardized protocol that you apply to all kids with sensory issues or autism. In fact, the therapists may need to actually start doing the therapy to even get a sensory diagnosis. This is part and parcel to getting to know the child, before she or he can truly tailor the therapeutic protocol and plan how to help your child.
So anyways, it is a less quantifiable approach, which means less kudos and funding. This is familiar to me because the same division exists within political science - qualitative vs. quantitative methodologies. The qualitative approaches usually get less kudos and funding, but that doesn't mean its the wrong approach. In fact, it may be the very best approach if you really want to deeply understand and research a small sample of cases. In the case of parenting, your sample is small, and there is no need to have enough kiddos to run regressions. Unless you have more than 30 kids, in which case, you got problems that the DIR model ain't gonna solve.
As you begin your journey to start building your team of supports - from psychologists, to speech pathologists, occupational therapists, to educators - I hope this outline of one approach gives you a sense of whether it would work for you and your family. Hopefully it will also give you the vocabulary to start a conversation about the type of approach you are looking for to help your child. Now you have the broad outline and you can say things like "we are looking for something like the DIR model, what do you practice in your clinic/therapy space?" or "Our kid needs more help with x specific skill set, so we don't necessary need to do the DIR model, but rather want to focus on improving x skill".