My daughter seemed different to me than other children her age. She was more sedentary as a baby and did not have great balance after she learned to walk. When she started preschool at age three, she started out on the roof with all the jungle gym apparatus. Most children immediately engaged in the activities but my daughter initially observed before playing. At the time, I had no idea she had Non-Verbal Learning Disability (NVLD). She was very verbal and liked school, although separating from me was a little anxiety provoking. She started waking up at night after she began school. Connecting to other children was OK. She had play dates and got along with others but in my eyes was not sought after. Her teacher was fabulous, attuned, accepting and created a safe environment for her to grow and learn.
The following year was horrible. Her teacher was not-attuned and had no idea what to make of my child. We went on a class trip to a Pizza parlor, I went along as a parent participant. She paired up the kids but left my daughter without a partner. When we got to the pizzeria my daughter went to the bathroom and when she came out, she was told by her teacher that she would not participate in the activity because she was late. I intervened and she did participate. I was puzzled and angry. Why was the teacher behaving in this rejecting manner? She even said to me one day that my child certainly marches to her own unique drum. It was clear to me that this teacher did not understand my child. Instead of communicating her confusion or her concern she became aggressive towards her and me. I felt in a compromised position. I was happy to work with the school and the teacher but the teacher made it as if there were sides. I felt we should all be on the same side, doing what was best for my child. This is part of the problem of being in a mainstream school when your child is different. The educators are not educated on how to interact with these children.
It was that year that she was evaluated. She took the ERB and had a big split between her verbal and performance IQ. Having a Ph.D. in clinical psychology I knew she must have some kind of learning disability. I had no clue what it was as learning was not my area of expertise. It took a year for us to find out that she had NVLD.
It was helpful to have a diagnosis. However, it was also confusing - her therapist said she was like an onion and we did not know how she would unfold. I educated myself, although there was not much out there regarding NVLD. It was clear to me that I needed to partner with her school. The fives were much better as her teachers were totally receptive to working with the specialists I hired and myself. My daughter was back on track or so I thought. She was different. She learned how to read like an adult that year. Her comprehension though was not commensurate with her decoding skills. She got along with others but definitely was not as able to engage in reciprocal play as her peers.
My daughter's educational journey has been difficult and uneven. When she was younger we were dependent on the teacher's receptivity, empathy and inherent skills. Some were good and some were bad. My daughter loved to learn. She worked hard. However, she was socially different. She misread social cues, asked a lot of questions and she could be off-putting. Some teachers knew intrinsically how to work with her or to reach out and ask. It was hard for me as a parent as it was isolating and I felt helpless at times. My daughter did not belong in mainstream but neither did she fit into the special educational system. She fit in nowhere. She stayed in mainstream. It was not the right choice. She needed a school with challenging academics in conjunction with a focus on the social piece, executive functioning and any other academic supports one might need. This school did not exist or I was not able to find it.
My daughter now in her mid-twenties will never be free of her disability. However, if it was made to be a valid diagnosis, which it is not, others like her may one day get the proper education.