What I learned helping my daughter overcome a developmental delay
A year ago my then 5 year old daughter underwent extensive testing and was diagnosed with a developmental delay. Her language skills were underdeveloped, she barely conjugated verbs, lacked age appropriate vocabulary, had trouble with categorization, opposites, directions, her phonological awareness was below age level, she had no phonemic awareness, and she scored particularly low on the RAN (Random Automatic Naming) test, which correlates highly with reading success in school.
I got the diagnosis and began zigzagging through the five stages of grief. I built elaborate arguments about why the diagnosis was wrong. I also nurtured a hatred for the entire educational system and specifically her kindergarten teacher who was clearly to blame for it all. Simultaneously, I fantasized about career paths for my daughter that required no reading, writing and minimal verbal communication. Then things really got tough as I was overcome with obsessive thoughts of regretting motherhood. I had a newborn in the house and three older kids, so needless to say this was both absurd and highly disruptive. Experiencing this diagnosis as such a loss revealed the tacit expectations I held for my daughter, and what a big place these occupied in my relationship with her. Acceptance came as a gradual realization and I began to look at this little person in front of me and see her for who she was, and not who I wished she would become. It wasn’t an ah-ha moment, it wasn’t an event. It was a gradual process which took place over months as I got to know my daughter, learned what helped her learn and what did not, and found my creativity and courage to own this process fully as her parent.
Lesson 1: Struggling kids need an unwavering champion
In trying to figure out what my daughter’s problem really was, I consulted experts; four psychologists, three language pathologists, a preschool councilor, school councilor and my daughter’s teachers and a host of books, websites and blogs. Some had more interesting things to say and others less so, but at the end of the day, no expert has more insight into your kid than you do. Recognizing this was probably the single most important step to taking effective action to help my daughter.
Initially, after consulting with an expert I would spend several days in a distressed haze of confusion. For example, one leading child psychologist told me that our multilingual household (we speak English, Hebrew and Portuguese at home) was a cognitive burden to my daughter and that ideally we would focus on one language from now on. This was confirmed by another psychologist. Two language pathologists said that there was some evidence suggesting bilinguals with learning disabilities did somewhat better than others. But we spoke three languages and there was no evidence regarding this situation. In the abstract, the argument for focusing on one language made sense. But our multilingualism was not some artificial decision concocted in the minds of ambitious tiger parents. We had deep cultural and emotional ties to these languages, they were our native tongues and speaking these freely at home was just our way of communicating. I decided that maintaining our cultural and emotional integrity surrounding the use of language at home could not possibly harm my daughter. In reconnecting with this subjective certainty, I found myself able to believe again my daughter’s strength and resilience, in her ability to learn and thrive. No matter what anyone said after this, I knew for sure that my daughter could learn anything and do anything she wanted to do. It was just the way there that needed to be different, and I was there to make sure she had access to that alternate route. I would discover it with her.
This conviction was important because my daughter was getting teased about the way she spoke, and was already noticing that her peers knew numbers and letters. She told us she didn’t want to go into first grade because she was dumb and was the only one who didn’t know how to read and write.
So when her teachers, a psychologist and two language pathologists advised us to keep her another year in kindergarten, it took conviction to insist she enter the first grade along with her friends. I knew that preschool and kindergarten had been a mediocre experience for her at best. She complained she was bored. She hated circle time. I felt that in some ways she just shut off her learning because she preferred to be inside her own head. I thought that even though it would be a struggle, the focus on skill acquisition would appeal to her practical nature. I was right. Now almost mid-way through the first grade, she is thriving. Reading at grade level, writing at grade level. She is motivated and engaged, and infinitely proud of the skills she is acquiring. I can’t imagine what another year of kindergarten would have done to her spirit, or what allowing strangers to determine her future would have done to mine. Believing in my daughter’s strength, getting her the help she needed and pushing aside all of the well-intentioned misinformation and doubt was crucial.
Lesson 2: Good help will make you a better champion
A month or two after my daughter’s delay was diagnosed, I scheduled a meeting for my daughter with the language pathologist who did her evaluation. She worked quite far from our house, and had an inconvenient time slot available, but at the time I was completely incapable of deciding to see yet another expert and my daughter casually asked if we would go see the nice lady again, so I figured that was as good an indication of competence as any. Indeed, she quickly managed to build rapport with my daughter. For the first few weeks and months, it seemed that a lot of her activities didn’t resonate with my daughter but as I sat there watching them interact week after week I learned two important things:
One, that my daughter had a deep yearning for this uninterrupted, prolonged and protected one-on-one attention she was getting from the language pathologist and that piggybacking on this need I could probably teach her quantum physics if I wanted to. This was a way in.
Two, the language pathologist would play games that focused on discrete aspects of whole tasks. At first this struck me as very odd. But as I observed this more I began to understand that there was a difference between knowledge and access to knowledge and that breaking up tasks could reveal a lot about how my daughter’s mind worked and how she could learn. For example, if shown three different letters and asked to identify the letter A, she might point correctly to the letter A. But seconds later, shown the letter A and asked to name it, she would draw a blank. It might seem like this meant she didn’t really know the letter A, so maybe she needs to be taught it again. But if she didn’t know the letter A, she would not be able to point to it correctly. In fact, the knowledge was there, it was just very difficult to access. Understanding that some things needed to be learned, and some things needed to be learned to access was another way in.
Without help I would have never been able to gain these two insights. And while my attitude was that if my daughter was going to thrive, it was up to me to help her, having another person involved gave me some support as well. As time progressed, the language pathologist got to know my daughter better and grew extremely fond of her. I could see she saw something special in my daughter and this too gave me he strength to be her champion.
Lesson 3: Creativity is the only path to success
Struggling kids struggle because they don’t conform and so by definition they require creative solutions that are not the cookie-cutter solutions most kids can tolerate. I found that when I embraced this idea, working together with my daughter became exhilarating. For example, my daughter was always drawn to patterns. It occurred to me that she might enjoy making large number mandalas as a way of engaging with numbers. I would write a number from 1–10 in the center of the page, and from this center, according to whatever number it was, hearts and diamonds and other shapes would expand outward. We would hang these on the walls in our dining room and her bedroom and it became something that visitors would get very curious about. And these would get increasingly complex and elaborate, as associations got woven in. One of our #9 mandalas for instance was on the theme of the nine muses from Greek Mythology. A few weeks before I was unsure my daughter fully understood the simple bedtime story I was reading to her and now she was asking to look at pictures of Greek vases as inspiration for how to draw Terpsichore.
Only by acknowledging my daughter’s innate creativity, and by embracing my own creativity as well, were we able to find ways to learn what appealed to her natural curiosity. After six months of intense work, my daughter began to read. The language pathologist reevaluated her and found her RAN and other scores now matched her age level. She did not find the tasks exhausting anymore. She was speaking with more fluency. When she didn’t know a word, she was able to isolate it and ask what it meant. Most importantly she knows now she is smart and creative, she knows she is the master of her destiny and she can accomplish whatever she puts her mind to.
The other day my daughter had to write some opposites for homework. As the opposite of “give” she wrote down “sell”. I know she will continue to struggle at times because she is just wired differently. In her way of thinking, the opposite of giving something (for free) is selling it. We need kids like this in the world. We need adults like this too. If their spirit is not broken, if they have a champion who defends them and supports them and allows them to create their own way in the world, these struggling kids can do the most remarkable things. And if you are lucky enough to be the parent of one of these kids, count your blessings and embrace the opportunity to learn.