Learning challenges – there’s light at the end of the tunnel

We were told in March of our (adopted) daughter’s kindergarten year that she was performing way below expectations, and that we should strongly consider having her repeat kindergarten.  20 years ago we were not really informed about learning challenges faced by adopted children (I think PAPs nowadays are much better informed). So this came as a shock to us, particularly since she was always extremely social and articulate, as well as the leader of her friend pack. It took us a while to accept that she may have a problem. They told us that her academic performance was at the 2nd percentile.  We knew that she had some neurological issues, such as stammering and vision problems. Not knowing what else to do, we had her repeat kindergarten.

Since she was still struggling in 1st grade, we got the school to do an initial IEP (Individualized Education Plan) assessment, which led to her getting extra services for Speech and Language Impairment.  She got the first (of several over the years) Neuropsychological Evaluations, which pointed out a variety of deficits without telling us what to do about them. Her 2nd grade teacher suggested we test her for ADHD, which we should probably have suspected since she was always hyperactive and inappropriately fearless.  She started medication which made a huge difference to her ability to focus, but she still struggled academically.

This started us on several years of interventions to help her with her academic deficits.  Central Auditory Processing Evaluation found some auditory deficits but subsequent Auditory Integration Training didn’t make much difference.  5 summers and 2 school years of Lindamood Bell sessions (Grades 2-6) helped a lot with reading comprehension. We tried 2 evidence-based non-invasive “brain training” programs to help with ADHD and Learning Disabilities – 3-month Interactive Metronome training in Grade 3 and  5-month PACE for Processing and Cognitive Enhancement in Grade 7. We did not see much influence of these programs but they were non-invasive so we were willing to try, since we believed that early intervention was key to overcoming learning deficits.

Our daughter was in public schools throughout – specialized learning schools such as Charles Armstrong (Belmont) and Sandhill School (Palo Alto) were not conveniently located.  So, from 2nd to 12th grade, I became a determined advocate for my daughter at the school, monitoring IEPs, forcing re-evaluations, bringing in Lindamood Bell teachers to advocate at the school.  In 4th grade, we were told by the school that her IQ was low at 92, and that she was performing as expected for her IQ and therefore they could not provide services. I had to argue that for a child who had issues with working memory, visual processing etc., the measurement of IQ at age 9 was not an indication of potential.  3 years later, we were told her IQ was 109, and she was performing just fine and no longer needed services and they wanted to drop her from an IEP to a 504. I now had to argue that they could not drop support at the first sign of adequate performance and force them to support her for another 3-year cycle.

High school became an exercise in cobbling together an appropriate educational environment.  Luckily we are in an area where it is possible to integrate 1-1 classes from School for Independent Learners (an accredited high school) with classes from the regular high school.  She was able to take difficult subjects requiring a lot of reading comprehension 1-1 at SIL, where they taught to her learning style using video and other material. We had tutors. I tried to help her with techniques for executive functioning – time management, breaking down large assignments into smaller tasks.

I accidentally found out about neurofeedback – a non-invasive technique teaching self-regulation of brain function.  In grade 11, my daughter went for 2 sessions a week for several months. Neurofeedback was remarkably effective for her – she was able to reduce her ADHD medication by half, and significantly improve her appetite and sleep habits which had been adversely affected by the ADHD medication.

I worried a lot that our daughter would feel like we are always “fixing her”.  I talked to her a lot about how different brains work. That her brain had strengths other brains did not have.  For example, she may not be able to write an essay for history, but she can make the most amazing art. Another constant challenge for me was how much to push her vs accepting her limitations. Am I shortchanging her by letting her take a special ed English course rather than the regular one? Should I push her to try for a B in Biology or accept that C is the best she can do without excessive effort and stress?

Our daughter got her high school diploma, got into college, did 2 years of college (often with significant support from me), decided college was not for her and moved to a community college, is in the process of getting an associates degree (without much help from me) before deciding what to do further.  She is significantly better at executive functioning and impulse control (the prefrontal cortex isn’t fully developed till age 25, so she still has some time).

If I can distill lessons from our long journey, it would be the following: watch out for signs; get testing done but focus on what can be addressed rather than trying to minutely understand the causes; early intervention is key; be careful you are not always “fixing” your child – your child should have a childhood, and have fun; build your child’s self-esteem by developing at least one activity they are really good at; teach your child self-advocacy skills – by high school they should be able to say what they are good at, what they have difficulty with, and be able to ask their teachers for accommodations; practice this language with them; give up on preconceived notions that your child will be a brilliant doctor, or artist, or gymnast; be a fierce advocate; and pace yourself for a long journey. But there is light at the end of the tunnel!

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