This week I have been reflecting back on my parenting experiences with my son and what an epic journey it has been. Although it has only been 16 years, we could certainly give Odysseus a run for his money!
As the parents of a gifted child with multiple special needs, we had quite the uphill battle to understand what exactly those needs were and who could properly address them. The first curve ball on this long strange trip was when my husband and I went for my amnio when I was pregnant. We were told that our son likely had bilateral talipes equinovarus, more commonly known as club feet. We realized that it was time to find an orthopedist and physical therapist. Then came the next curve ball.
Hours after his birth, the doctor told us he had issues related to his kidneys and would need to have surgery, so we found a urologist. Soon, we noticed fine motor problems, so we got an OT on board. By his first birthday, there were language delays and he needed ear tubes, so we added an ENT and speech therapist to our growing team. As stressful as all of this was, compared to what we had yet to face, finding all these professionals to address his multiple medical and early developmental needs was pretty easy.
While we already had this gaggle of doctors and therapists working with our son, my husband and I felt that there was something else going on that no one was quite getting at. There was some elusive diagnosis we thought must explain our son’s overall “differentness” from our first child – his intense fussiness and seeming discomfort in his body, his weird habit of pounding his legs against the side of the crib until he literally destroyed it, his lack of eye contact, his obsession with swinging, and so many other little quirks that didn’t seem like such a big deal when considered separately, but when viewed as a whole seemed meaningful.
We kept him in a private preschool for pre-k because they were able to provide all of his services and he was doing pretty well there considering all his idiosyncrasies. It was his transition to public school when we saw things really hit the fan.
Kindergarten didn’t exactly go smoothly but we got through the year and at the IEP meeting the school team members assured us that they could meet his needs. But by the middle of first grade, we started to get more notes and calls about his behavior, which included refusing to do work, yelling at his teachers and running out of the classroom. By the end of the year, they were still telling us they could address his needs, however they advised us to put him on medication and get him into therapy. At that point we decided to seek an independent evaluation to better understand what was really going on. And this is where things took a hard left.
We were lucky enough to find a great neuropsychologist who really understood our son and was able to tease apart his distinct areas of strength and challenge. However, her recommendations included an Orton-Gillingham reading program (what the HECK was that, we wondered), Cognitive Behavior Therapy (again, what?!?), a social skills group (I feel like a broken record) consultation with a psychiatrist for his ADHD (okay, I think I need a stiff drink now) and parent training (make it a double!) Holy effing crap! I was paralyzed. How would I find all of these people to help my son? What was the priority?
We decided to start by looking for a psychiatrist and behavior therapist because those were professions I felt I had some understanding of and I mistakenly thought that finding them would be straightforward, like our earlier searches for doctors. (Plus, in that moment, I couldn’t fathom how something silly sounding like Orton-Gillingham would yield any meaningful results when it came to my son’s explosive behavior.)
I was not prepared for the dearth of mental health resources available for children. Waiting lists were long. No one took insurance. And once we finally got in the door to a therapist or psychiatrist, they did not really grasp what was going on with our twice exceptional son, and consequently were not able to work with him or us effectively. Some couldn’t get past his poor articulation and underestimated his intelligence. Others were charmed by his intelligence and humor but couldn’t reconcile those with his immaturity. Others had great reputations and talked a good game but for whatever reason could not deliver for us.
We agonized over what would become of our son if we didn’t find the help that he – and we – needed. At that point in his life, I would say to people that my son would either invent the next iPhone or wind up in jail. Or both! My husband and I called on every resource and connection we had to help us figure out what our son needed.
Things finally started to turn around when we found a behavior therapist who specialized in trauma of all things. She used an empathy-based approach to working with him and incorporated the Social Thinking methodology into their activities. She also helped us find a school that catered to twice exceptional children (which had him work with an Orton-Gillingham trained reading specialist!!!.) Eventually we also found a psychiatrist who figured out the right combination of medications, and eventually lowered him down to a low dose of a single medication. I have not even gone into the search of the right speech therapist and social skills group because that could take up a whole other blog post. Needless to say, the search for those team members required some trial and error as well.
After two years of throwing good money after bad and spending hours of lost time shuttling between various appointments, we had finally assembled a team that really understood our son, could address our needs as his parents, and workcollaboratively with one another! Oh joy!
As I met other parents of twice exceptional children I discovered that they too had similar experiences following long, arduous and circuitous paths in their quests to get their children the help they needed. It struck me how much time and money were spent working with people who didn’t understand twice exceptional children. The main reason for that is because parents and professional alike were unaware of what twice exceptionality was, let alone how to work with 2e kids and their families. Yet we had all eventually assembled a team that did understand our kids and we were finally seeing real progress.
It was that experience that inspired me to begin compiling a list of providers that all these parents of 2e kids have worked with effectively. This list has evolved into what is now known as TECA’s 2e Provider Directory. I thought it was so important to help other families going through what we went through to find those professionals who were more likely to be effective in working with us and our children. While not every professional is a good fit for every family, knowing that you can look at a selection of therapists, doctors or schools and know that there is a common baseline of understanding, will make your search for the right fit shorter and more effective.
To aid in the process, we have produced a series of worksheets to help parents identify what their specific concerns about their children are, communicate those concerns to a potential provider and focus on what questions to ask a potential provider to help you determine if they are a good fit for your child and family.
We hope you will use these tools in your search and that they will help you shorten the road ahead of you so that you can more easily find the help you and your child need.