Recently, in anticipation of National Child’s Mental Health Awareness Week, the Directors of Pathways Institute interviewed a colleague who has a daughter with learning and attention differences. Pathways Institute works therapeutically with people who have learning and attention differences and their families, and helps them to navigate the system to get services.
When did you notice your daughter’s learning differences?
I was lucky: when my daughter was quite young – a little over one year old – I noticed she didn’t have hand dominance. I remembered reading an article about hand dominance as a possible early indicator of learning disabilities while I was in graduate school. At that point I started to pay closer attention to the how she was developing.
What happened next?
In preschool they did a “ready for kindergarten” screening and the occupational therapist conducting the screening noticed a couple of things. She noticed the lack of hand dominance and the inability to cross the midline, meaning she would start drawing on the left side of the paper with her left hand get to the middle and switch to her right hand. She alerted us that we might want to have her assessed. We set that up and discovered a couple of things that surprised us: our daughter had weak core strength and no hand dominance. The recommendation was she do occupational therapy. We started it and it was helpful. She spent two years in OT and at the end was able to cross the midline and the OT felt she chose to be right handed. At this point she is still quite ambidextrous.
How did she do when she started kindergarten?
This was the beginning of a very difficult time for her and us. She had a great deal of difficulty learning to write her letters and she was already identified as a child that was unable to pick up the first pieces of reading. It was recommended to us she do some afterschool work with her kindergarten teacher on phonics. We signed her up and she did two rounds of 6 weeks. At the end very little progress was made and when we asked the teacher, who had a masters level degree as a reading specialist, if she thought we were dealing with dyslexia, she wouldn’t answer the question. I learned later that she wasn’t allowed by the school district to answer. This will remain forever immoral and unconscionable to me. Here we had a child who needed help and they refused to tell us, for political reasons. But in spite of this lack of information, I knew that learning disabilities are genetic, and I have a sister who is dyslexic, so I was now “on the case,” so to speak.
Was the school supportive?
We had to push and push for testing, and finally at the end of second grade she was tested. But she still somehow managed to fall in the low, low averages which would not qualify her as learning disabled. The testing showed just a couple areas of significant deficit: in particular, she scored at 2% for short term visual memory processing. Because she was strong in other areas, she didn’t qualify.
There is an undeniable conflict of interest if the same institutions that have to provide the services are doing the testing. I know most parents with dyslexic kids are shocked to discover – and the generable public should also know – that the acceptable averages to qualify as learning disabled are so low that kids have to be several grades behind in school before they qualify for services in California. And even then some don’t. My kid didn’t. Most kids that fall that far behind experience depression and anxiety. This should be unacceptable and people should be outraged. In essence we didn’t get anywhere with the school district, we had incredible problems trying to get help for our daughter, but that’s a story for another day. Suffice it to say that sadly schools and educational administrators don’t appear to be interested in why a child isn’t learning. This should be the mission and mandate of special education, not “does a child simply qualify.” It is a broken system where everyone ends up demoralized.
What was it like for you to be denied services for your daughter?
Traumatic. My wife and I were incredibly confused, distraught and angry. We really didn’t know where to turn or what to do. And we were both well-educated professionals. We couldn’t understand why no one seemed to want to talk to us or how could it be that all these education professionals, who must have evaluated hundreds of kids, were acting like they didn’t have clue? Our daughter’s principle told us, “Why don’t you take her to one of the private schools that specialize in learning disabilities?” It is hard to know if she was asking us to leave or telling us she couldn’t help or both.
Luckily we had a friend who told us about an amazing organization: Parents Education Network (PEN). We were introduced to several PEN members, and talking with them was like walking out into the sunlight after being in the dark for years. They told us to stop talking to parents of kids without learning disorders, stop talking to educators who don’t care or aren’t interested or able to think about your child, and surround yourselves with supportive friends, family and the parents of LD kids who are a few steps ahead, join PEN and get more information and education. Finally, they said be prepared to sacrifice and invest in your child. We were lucky that it was possible for us. It isn’t for most people and that is one of the great educational crimes of our time. PEN saved our sanity and in ways ultimately our family.
What was it like for your daughter?
It’s very painful to recall. During her K-3 years in school she just went down, down, down emotionally. Every day she went to school and was frustrated and failing in making the kind of progress her peers were making. She was a good kid and so she never acted-out in school, although some kids do. But at home she was angry and in a dark place. She hated school and didn’t want to be there but went anyway. She was an incredible trooper as we were intervening with reading specialists and math tutors. She’d go to school all day and then 4 days a week go to tutoring; she was exhausted. She was sad. She wasn’t well received socially; she did have a few friends but I think because she was so insecure and frankly exhausted she could be controlling and inflexible. It was hard on her friends and hard on her. Her insecurity stemmed from living in body with neurophysiology that was failing her in school. I think she was riddled with fear and quite anxious.
What help and treatment did you seek?
We went to a very wise child psychologist, who told us to get her out the school, change her environment and put her in a school that specialized teaching kids who are dyslexic. He told us this wasn’t a parenting problem – we had been told it was a parenting problem at different points by school administrators and unkind people who saw an unhappy kid and blamed us, the parents. He recommended we get her neuropsychological testing which was informative and verified what we knew in our gut: that our daughter had learning and attention disorders, although they failed to give her a diagnosis of dyslexia. Once she was at the new school with experts they all said, “Your kid is dyslexic”. As an aside, we were so glad to learn that finally, in the upcoming DSM-V, dyslexia will be included with an understandable and researched-based criteria. You have no idea how relieving this will be for us and millions of parents and kids who are dyslexic. An actual criteria worked on by the Shaywitzs, the leading researchers and experts in the field.
Did you feel relief after the neuropsychological evaluation and diagnosis?
Recently, I saw a clip of an interview with James Redford about his new movie, The D Word. It is about his son’s journey with dyslexia. He was asked the same thing. His answer was something like, “No I wasn’t relieved once there was a diagnosis, my son was functionally illiterate and I was still caught in the fear of wondering how this kid is going to make it in life.” I nearly broke down in tears when I heard that clip – another parent, a father, that really understands. I wasn’t relieved either. I didn’t know how my daughter was going to do. Would she ever get to a place of acceptance, would she learn to read, would she have the chance to go to college? Would she plateau at a very low level, would she ever feel secure? A child’s world and job is school, and when they start out failing the psychological impact is huge. I knew that kids with LD and ADHD are at high risk for dropping out of school, drugs and other impulse disorders. I wasn’t relieved I was still terrified.
You have seen a change in your daughter over the past few years. What’s different now since she has been at the school these last 4 years?
My sister is a psychoanalystand I remember talking to her about my daughter when my daughter was about 7-years-old. She said, “You know, some day she will need to tell you what is was really like for her.” I was puzzled, I didn’t really get it because I thought I knew what it was like since I has been through it with her. My sister said, “She will need to tell you how painful it has been and likely how angry she has been at you, because she is dyslexic and in that way different from you and Lori (my wife). You and Lori didn’t struggle in school and you don’t struggle with learning now.” At that time, my daughter would just express anger and shut-down, she never was able to talk about what was happening. She was obviously young so I couldn’t expect it but was this ever going to happen, this kind of conversation with my daughter?
Even after going to the new school my daughter struggled at first – she saw it as a school for losers. She was projecting her own insecurity and lack of acceptance on the school and kids. Gratefully, we were referred to a truly gifted child psychologist who worked with her. This psychologist really understands LD kids and is so incredibly patient, sensitive to and interested in their amazing minds. She has helped my daughter accept being dyslexic. It wasn’t quick, and it wasn’t cheap, but the therapy and the education has been worth every penny, miles of carpool, and thousands of hours of time.
I always hoped the day would come as my sister suggested it might, that my daughter would be able to say to me and my wife the truth about her experience. That day came about a month ago. It happened when my daughter was having a brown out (unable to recall from memory knowledge she had the day before) and struggling with homework. She was tired and frustrated and then just began to weep. She said to me, “You don’t understand what it’s like. I have to work so hard and sometimes I just can’t remember or find things in my mind. And you aren’t dyslexic. You and mom never have these kinds of problems and you’ll never know what it is like.” I knew then that she had really begun to develop a place of deep acceptance of herself and that she could now tell me what was so painful, that things were easier for me, that she was different than her mom and me. It was a deep expression of psychological security and healing.
I still get anxious – currently I worry about next steps as we begin to look at high schools – but I am not as scared. And when I can sit back and just see what she has accomplished I am filled with the deepest respect and love for her. I have to keep working on having faith so my own fears don’t get in her way. I now believe that she is going to have an amazing future. She is the strongest person I have ever known.
How does your daughter feel about herself today?
Well you’d really have to ask her. What I see is that my daughter is learning, she values her unique out-of-the-box thinking mind, she wants to be a scientist, she has learned to be quite flexible, and has a full social life of friends. She is able to laugh and recently just happened to say how she doesn’t feel angry any more. We owe a great debt to all those who have supported her and us. Both my wife and I feel that educational advocacy for this population of people will be our life’s work. Every child and family should have this kind of success, whether they have money or not. It is the right of every child to learn and grow to their fullest potential.