“What we have here is a spectrum disorder.” That is how the news was delivered to me as my highly anxious almost 3 year old was itching to get the hell out of the evaluation center. The next bit of insight was, “I think whether you do behavioral therapy or Floortime doesn’t matter, but you just need to do something intensive with a lot of hours. It is a good sign she has language. She will need to have therapy in a very calm and quiet environment.” That bit of advice was followed by, “Remember, you know her best.”
With that, we were out the door and I was looking dazed and confused, because of course at the time I did not feel like I knew my kid at all and had no idea what to do with her. Their advice was minimal and so superficial it was basically worthless. But then again, we were at a center where they were behind schedule. Many more kids to diagnose were sitting in the waiting room. At least they were sitting, mine was screaming her head off, so much my mother had to push her in her stroller in the hall to try to calm her down.
Did they know she was different from most they diagnose from the start? Were they hinting at that in their “advice” … that piece about the “calm and quiet environment” haunts me to this day. Yes, she has more anxiety and sensory issues than many kids I have met on the spectrum. Did I just miss the hint? Then I tell myself, there was no way I could have known that her anxiety and sensory issues at the time would predict she would be a slow progressor. And there was no way to know that her personality makes really pushing and forcing her to do things a total backfire….that meeting her where she is and slowly expanding her was the answer.
What advice do I wish the evaluators would have given me? What could have made a difference? Well, this, for a start:
1. Your child is on the spectrum, which is very wide. Some kids progress fast and others progress more slowly. There is no way to really tell what your child will do, so it is important to meet her where she is and help her make small steps forward. Try to remain in the present, because freaking out over an unknown outcome is not going to help her.
2. Co-morid issues are possible. Make sure all underlying medical issues are understood and consider how they can factor into behavior. (Note: In our case, dyspraxia and oculomotor apraxia ended up playing a huge role in her development.)
3. Because of her anxiety and sensory issues, pushing her too hard can backfire. You must learn to read her and understand her way of thinking and talking, and you will become her interpreter to help others understand her. Continue to listen to your instincts and use careful observation to hone in on her subtle cues. Floortime is helpful, because it teaches you to meet her where she is and slowly expand her to get her ready for interacting with other people. Most Floortime therapy is private and not covered by insurance, unless it is integrated into occupational therapy, speech therapy, and behavioral therapy. Be aware that many therapists say they are proficient in Floortime techniques, but they are not.
4. There will be many therapists involved in your child’s care, so insist on team meetings to keep everyone on the same page. On your child’s early intervention (3 and under) and school-based (preschool to school years) teams, she will have an occupational therapist (to help with fine motor skills, activities of daily living, and sensory issues), physical therapist (gross motor skills), speech therapist (articulation and general speech work), and behavioral therapists (help with coping and a variety skills which often overlap with the other team member’s goals). It is very easy for confusion and inconsistency to happen with so many team members, so insist on frequent communication between team members.
5. The bulk of early therapy will be performed by behavioral therapists and their aids (verbal work and academic readiness), because applied behavior analysis (ABA) has the most data in the literature and therefore is funded by school districts and insurance companies. Behavioral therapists can help with strategies to control anxiety (for example, use first we do this, then that language to manage expectations) and use developmental maps to form goals. You must decide what types of behavioral therapists you want…those who do more natural therapy (look up pivotal response, Denver Model) or those who do more rote drilling. In current literature, the field is tending towards more natural, play based and relationship based therapies integrated with the behavioral therapies (look up Floortime and RDI for relationship based therapies). In reality, behavioral therapists who are proficient in relationship based therapies and natural ABA are hard to find. Ask tough questions and don’t back down.
6. When something isn’t working, move on. Don’t be afraid to fire people. You are the parent and you make the decisions.