My daughter, Anna, 10, was diagnosed with NLD last year. I had a normal pregnancy and normal delivery. During Anna’s first 4 years of life, she was rather quiet and clingy. I took advantage of the situation and held her all the time, she was like an extension of my own body. She was happy as long as she was with me. She did not enjoy people’s compliments and signs of affection much. She was content ONLY in my presence and when close to me physically.
She took rather long time to start talking in full sentences. She also took a little longer to start walking. Or, in retrospect, it took her longer to venture far from her comfort zones (home, me). She could walk and run and be happy, but rather at home and in my presence.
People always told me I was overprotecting her, that I should let her walk instead of holding her, etc. (I am sure other parents experienced that, too!), but I felt inside of me that I was doing what I had to do. I felt that she needed it.
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It was difficult to find a pre-school that was nurturing enough for her. Her first school was a small Catholic School where the teacher suggested that I get Anna evaluated. She had observed that Anna did a lot of parallel-play and not so much interaction with her peers. So I decided to follow the teacher’s advice and had her evaluated by a state-funded program called “Child Find.” She qualified for Special Ed in Social Skills and Speech. It took sometime before she started to receive services, but not too long. A special ed teacher would come to her class once a week (to the Catholic School) and helped her with her social skills. I also took her once a week to a Speech Therapist at a public school. The Special Ed teacher was very helpful and provided great support to Anna and me. The school teacher insisted in fostering independence and I eventually realized that Anna needed a different type of school (well, her Special Ed teacher also suggested that Anna attended a more nurturing pre-school). I moved her to a smaller pre-school (only 12 kids and 2 teachers!). Anna adapted well and enjoyed going to school.
When she was ready for Kindergarten, she passed the admission tests at the Catholic School. However, the principal did tell me she needed extra support. I had then decided to look for a public school instead. I did not want Anna to be taken out of school for special education. I wanted as much stability as possible. All in one place.
I moved Anna and her brother to a K-8 alternative school. At first it was hard for my son, but Anna adapted really well. She made friends with one girl and got along with everyone in her class. Academically she had always been rather behind, but the teachers kept seeing progress and I didn’t worry too much.
By the time Anna reached 3rd grade things fell apart for her. She came home frustrated after school every day. She cried, threw tantrums and was very anxious all the time. I tried to do homework with her, but it was a huge battle just to sit down and get started. And when we actually were able to do homework at all, she had a hard time remembering what we learned a few moments ago. I was confused. I didn’t understand what was going on. She had a hard time expressing herself. She didn’t know how to. She gradually started telling me school was too hard for her and that she felt frustrated every day.
Her 3rd grade teacher told us that he didn’t know what to do with her. She just refused to try. So after a meeting with the Special Ed team and her teacher at school that year, I knew I had to do something. I needed a diagnosis -until age 9 the school district can call every learning problem a “learning disability” but they don’t need to specify what it is. After age 9, they should be able to narrow it down. In Anna’s case, they decided that Math was her (only) problem and removed all other services from her IEP (namely social skills, reading, writing and speech). Anna was left with help in Math only. I definitely KNEW and was SURE I had to do something! So I consulted with the Special Ed teacher at school about a neuropsychological evaluation. She said it would be good.
I decided to spend a couple of months in Paraguay (my home country) last summer, and while there I took the opportunity to consult with a neuropsychologist. Anna went through a 2-week evaluation process at her clinic -including a complete hearing test and EEG. The diagnosis: NLD (called developmental dysphasia there). I was lost. I didn’t know what to think. I didn’t understand it well enough to start helping Anna the right way. The specialist was very clear and thorough when she explained what it was and what I had to do. That is when my journey started.
It took me a whole school year to have the school acknowledge what Anna has. After coming back from Paraguay, I translated all the documents and presented them to the school. I also took her to a learning clinic in our city to confirm the diagnosis. Sure enough, it was NLD. I requested an external independent evaluation at public expense and was granted it. Anna was evaluated once again and the results were the same: NLD. Now with that evaluation sponsored by the school, her IEP had to be adjusted and services had to be added.
Finally now -almost at the end of 4th grade- Anna will start receiving the maximum amount of support at resource level. This means that if she does not improve much from now until she finishes 5th grade, they would have to consider a placement.
Ever since her diagnosis, I started tutoring her myself. One hour daily. I followed the neuropsychologist instructions and read everything I found about NLD in order to help Anna. At the beginning she refused to do what I called “Study Time” with teacher “Lucy” (my fake name so that she remembered I was not mom during that hour). But after a few weeks, she would not miss one study time! She loves routine and study time became part of it. I also found a fantastic SLP that has helped Anna -and me- a lot. I help Anna at school during Math time twice a week, too.
I feel exhausted every day. I am mentally tired most of the time. But always hopeful and positive. I don’t listen to people who think and tell me I am overprotecting my child, that I should discipline her, that she is spoilt, etc. I trust my gut. It has always pointed me in the right direction. I decided to provide my child with ALL the help I possibly and humanly can. No matter what it is. All sacrifice so far has paid off.
Thanks NVLD Project for this chance to share and help. Just as with other learning differences, this one will make it to the DSM and we will find more answers.
Maria
I am originally from Asuncion, Paraguay. I have lived in the US for 14 years and have two kids. I work as a translator and interpreter. I enjoy being with my children more than anything in the world and think that they deserve the best we can give them (which is usually a lot more than we think we can!). I enjoy running, reading and being with my friends.
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