There was never any question that we would send our daughter to public school. We were living in a small, diverse urban school district, and we hoped that our daughter would get accepted into one of the magnet schools of our choice. She didn’t. We had a choice. So, we enrolled her in a private Montessori school with the intent of moving back into the public school system the following year once the lottery re-opened. We never had the chance.
Once our daughter was diagnosed with a learning disability, she was ineligible for the lottery. Matter of fact, we were told that two elementary schools offered reading services, and she would be enrolled in whichever one had an opening. We decided that staying in the private Montessori school was the best decision. It wasn’t easy, but we had that choice.
After several years, our daughter was not making adequate progress in the public school system. A private school for language differences was recommended. I wondered if we could use our 529 college savings plan to pay. We couldn’t. The funds were only eligible for higher education. If we didn’t do something now, higher education was moot.
For families like ours, using our 529 education savings to pay for a specialized school is a solution. It is an imperfect solution as it leaves out the many people who are unable to put aside money in a 529 to save for their kid’s college education. For the general population, there is concern that it creates a broader class gap in education, and this is valid. So, it is with mixed emotions that I embrace this piece of the Republican tax overhaul. I see it as a short-term solution for families like ours who have documented proof that the public school is not working for them, and private, specialized schools are necessities. For everyone else, I’m not sure. #Dyslexia
“She’s so smart. I told her that every day,” said our daughter’s tutor when I asked her how our daughter had progressed so quickly after six weeks of Orton-Gillingham tutoring. Our daughter is smart. Most kids with reading and learning differences are smart. Have we told them enough that they are smart? What if every parent, teacher, and tutor told each of these kids every single day that they are smart? Would it make a difference? According to groups like Eye to Eye, dedicated to mentoring and changing lives of kids with dyslexia, and other experts who touch on what is commonly referred to as social and emotional learning (SEL), the resounding answer is yes.
International Dyslexia Association Annual Conference
It’s a unique experience to attend a conference in a dual role. First, as a mom on a singular and often lonely quest to decipher the world of reading differences from every angle, and second as a blogger with a new organization determined to make a difference in this area that requires all-hands-on-deck. I’m just back from The International Dyslexia Association’s 17th annual conference. I attended the Family Conference that is essentially the last two days of the full conference with several sessions more specifically tailored to parents.
Over the course of my career, I have been to countless conventions—first as an editor for large educational publishers and eventually as a vendor—but the experience was never personal. The theme of the International Dyslexia Association convention was “until everyone can read.” Those of us whose lives have been upended on that simple quest understand the power of that short-phrase. It may sound light, but it’s not—it’s very personal.
Between the exhibit hall and the fantastic, information-packed sessions, my head was genuinely spinning as I tried to wrap my thoughts around all of the information and how it might quickly translate into improved content, better services, and better quality of life for all of the people struggling each day to read. What models and best practices could we jump on and implement in our communities to start making change? To focus, I thought of our daughter, what she needs, what her teachers need, and what I, as a parent, could do to make the right decisions as we continue on our journey. What struck me, is that there are so many promising ideas, but initiating the solutions remains a head-scratcher. What can we do now, today, immediately, that will make a difference, make it better? Time is of the essence.
Our kids are smart. Kids with LDs are smart. Tell them every day “You’re smart.” Until more bills are signed, we need to tell them they are smart. This affirmation will change their day. Meanwhile, perhaps we can create a better educational environment for our kids without creating more bills. For example, a Ridgewood, New Jersey school trains their general education K-2 teachers in 30 hours of multi-sensory reading through The Institute for Multi-Sensory Education and also serves as a test site where their teachers can become multi-sensory teacher certified. Pennsylvania is piloting an early intervention program throughout the state for screening kids at an early age. In the Capital Region, A Different Way in Reading offers services for free or at nominal cost to kids who would otherwise not receive a structured literacy program. Let’s replicate these best practices and start getting more kids the services they need. In the meantime, tell them they are smart. “You’re so smart.” It’s the most significant change we can make today.
Stolz (correspondent) District Boasts Above-Average Dyslexia Detection and Response Program (July 1, 2017) Retrieved on November 19, 2017 from http://amp.northjersey.com/
It’s dyslexia awareness month. As such, I would be remiss in continuing our story without mentioning adoption, particularly international adoption. What about adoption and dyslexia, or learning differences for that matter? Where is the research, and why isn’t adoption cited more frequently as a subgroup within the broader dyslexia community? Maybe it would over-complicate a very challenging educational space, or possibly most people have no idea that such a high percentage of adopted children, especially those adopted internationally, are dyslexic. If only we knew.
Statistical and Empirical Evidence of High Rates of Dyslexia in Adopted Children
The first person who told us that our daughter would have a learning difference was our adoption attorney. Go figure. While preparing some adoption paperwork, she indicated that our daughter would not get through college in four years—if she went at all. I was insulted. How dare she stereotype our perfect child! Because she had worked with internationally-adopted children her entire career and since our daughter came to us at around the age of two, the attorney predicted our daughter would have some type of learning difference. We knew we would prove the attorney wrong, but sadly, we didn’t.
What I learned is that in 2014 alone 110,373 kids were adopted through foster care, and domestic and international adoption (Jones and Placek, 2017). Kids who are adopted are twice as likely as non-adopted kids to have learning and attention issues, and one in five has a learning disability (Morin, n.d). So, of the 110,373 kids adopted in 2014, 22,075 of them could have learning differences, such as dyslexia.
Adoption in the Dyslexia Space
With such a high percentage of adopted children eventually diagnosed with learning differences, how much of the published or ongoing research or initiatives take their many differences into consideration? Several years ago, I followed a study on language disruption, and the havoc it wreaks on children when a first language is suddenly halted, and they are only exposed to the new language (Gindis, 2004). I have also followed work that speech-language pathologists conduct on this very same issue. Yet, despite the growing awareness among professionals, we rarely hear how adoption is a factor in reading differences when we are meeting with professionals to talk about interventions for our daughter. Maybe the feeling is that at this point, it’s just too late; dyslexia presents as dyslexia, and the underlying reason is a moot point. I’m not sure I buy that, though.
Like so many areas, adoption and dyslexia are presented in different silos.
With dyslexia and adoption rarely mentioned together in mainstream studies, several questions come to mind. For example, are the brains of non-adopted kids with dyslexia and adopted kids with dyslexia organized similarly (Wolf, 2017)? Are adopted kids more likely to have dyslexia based on missed milestones and other related issues rather than inheriting the difference through genetics? It seems obvious, but experts should validate that vital point. It is hard to believe that we are the only ones attempting to connect the dots. So, why does all of this matter, especially to adoptive families? Not being a speech pathologist, reading specialist or even an adoption specialist, I offer three thoughts from the perspective of a parent with a child from Guatemala, and why it matters:
1. If we know that sudden language loss contributes to learning issues, a decision to continue the first language could be part of the post-adoption plan.
2. International adoption agencies could prepare parents better.
3. Funding sources to maintain the first language could be sought.
Maybe we just need a closer alliance or a bridge between the adoption and the dyslexia communities. Please let me know your thoughts or comments on this post. I would also welcome any information about ongoing or published research on this topic.
Early on in most relationships, it can be a bit murky deciding who should pay for dinner regardless of who is the bread-winner. Eventually, it works itself out although it can continue to be a source of frustration if both parties are not forthright or comfortable with the situation. If your kid has significant learning or reading issues then who is responsible for paying for all of the recommended services?
The Independent Evaluation
When it became airtight evident that our daughter was not progressing or progressing inconsistently, with confidence I requested an independent evaluation from the school district. Perhaps I could have or should have done this earlier, but I bristled at the idea of our daughter sitting through six weeks of assessments. The kid is continuously pulled out of school and all the sitting! She’s a kid. She should be running around.
When kids miss school for learning assessments, they are counted as absences!
Additionally, I felt a bit ill about potentially doling out a few thousand dollars if the school district turned down the request. Many of my friends had requested an independent evaluation through the school or district and were denied or decided just to pay out-of-pocket. I want to make it clear that I am not an expert on Wright’s Law and cannot comment on the legalities of any of this. There are people more in the know that may have more informed things to say about our rights to an independent evaluation, and how to navigate the probable loopholes on both sides.
In our case, the school district was footing the bill, and there was no challenge getting their blessing. Admittedly, the documentation was undisputable, but still, for families not used to getting good news from the school district, getting the green light for the assessment so quickly was thrilling! I’ve written in previous blogs about the impact that the results of the neuro assessment had on our family, but there’s another twist. What about all of the money spent on the assessment and the potential financial implications of the results of the assessment?
Who Pays to Teach My Kid to Read?
The district just spent a few thousand dollars to have an expert recommend potential solutions. Thank you for this! The highly educated and paid expert recommends a private school for language differences, homeschooling, or the most widely accepted, research-backed multi-sensory interventions. Radically these solutions, most notably the private school, is the cost to keep our daughter dreaming. So, now what?
If a district spends a few thousand dollars on an independent evaluation shouldn’t there be specific criteria they follow to accept, reject or mildly disagree with the recommendations or is the assessment just protocol and the results up to the whim of the school district to support or comply?
I’ve heard stories of schools where the recommendations are blatantly ignored. Thank heavens we did not have that experience, but there is no doubt that there’s an elephant in the room-private school for reading differences, amongst others. Perhaps the current intervention, READ 180, needs to be tried before the school considers the “gold-standard” intervention or maybe private school will never be an option unless we work with an educational attorney. There are no clear paths in this world.
The Journey Continues
The next post will look further at who pays to teach my kid to read, and why the potential solutions continue to remain elusive.
They say the cobbler’s children have no shoes and that’s a little how I felt when it became apparent that our daughter had a reading disability, difference, gift or however you are most comfortable hearing it described. While I’ve personally had to work really hard to simply be adequate at many things, nothing has ever come easier to me than learning to read and write. In second grade, I remember hiding behind the bookcases in the back of the classroom to read and avoid math and other subjects that were less appealing to me at the time. Surely my daughter, whom I had read to incessantly, would also be a good reader. Even though she’s adopted, my constant reading must have marked her in some way- not the case. At least in the context of being the precocious reader I was expecting.
Wondering How to Dream
Our daughter reads emotions better than I could ever hope to. If being dyslexic really is a gift then perhaps one of her talents is that instead of reading words she can read people. She would be great working a room at a convention. She is athletic, artistic and mechanical. She is social and talkative when she wants to be, but she can’t easily read words. She just can’t. Because she can’t read words, it’s hard for her to believe that she is smart. When most of the world does something with minimal effort that’s so hard for you, it’s difficult to believe you can achieve. So, when the headmaster of a private school for reading disabilities/differences asked us why we wanted our daughter to attend his school, my answer was twofold:
1. The neuropsychologist who provided our independent evaluation specifically recommended two private schools for language disabilities, and, naturally, we chose the one closest to our house. OK. Perhaps we put a little more thought into it, but we had heard good things about the school, and it seemed to be well thought of by the dyslexia community in our area.
2. We want her to dream about her future!
Dreaming about what you want to be when you grow up seems little to ask, but how can our daughter dream when she perceives herself as less than her peers in so many academic areas. As parents, the message we are hearing is that a traditional middle school and high school will be challenging to get through, and her diploma options could be limited. She could be like some of the more famous dyslexic people like Richard Branson, Henry Winkler or even Cher, and break through all of the barriers and overcome the obstacles, but we’re not willing to bank on it. Those beautiful people are really the exceptions.
I don’t think my daughter really knows how to dream anymore. It ended by third or fourth grade when the academic gap became apparent. Right now, the only way we can teach her to dream comes with a cost.
The Hornet’s Nest
Our daughter goes to a private Montessori school with services at a public school. We love the Montessori school, but, in fact, we are public school advocates at heart. Yet for many reasons, the public education system just never worked for our daughter. I have not entirely given up on it, but sometimes families like ours need other choices for our children to be properly educated. Our daughter has a severe reading difference, and a neuropsychologist pointed out to us that she cannot easily learn in a traditional school environment. Even so, we are not carte blanche for school choice. It is way too complicated of an issue to present as black or white. Like other families in our situation, we are just singularly focused on getting an education for our daughter that will allow her to dream, and we are unwilling to accept that we have to pay for it.
The Cost of the Dream
So, our family, along with many others, carries the torch of the dream, often resulting in gut-wrenching and wallet-emptying choices. Stay tuned for Part 2 to read more about the cost of the dream.
Progress, progress, progress. The overall impression from the tutor and some of the administrators is that our daughter progressed at Camp Dunnabeck. Mostly we hear that she is making incredible progress, but we simply need to hear the word “progress” to be relieved. It has been years since the word progress has been used relative to reading skills without the terms gradually or inconsistently preceding it. Progress. She is improving. She can get better. She can strive. We can hope. She is not just artistic, creative and athletic. She is smart-period. We never had doubt.
It’s time to go home. It’s time to figure out school for next year. It’s been six weeks of commuting and staying in rental properties in remote areas with mixed WiFi and cell service. For these past few days, we are in a studio, basement apartment two miles from the camp. It is Hudson River School of American Landscape painters breathtaking, but so secluded. I’ve had a fever each night along with aches and pains in my neck and shoulders. I’m ready to go home. I miss Tiana. I miss our cats. School starts in less than a month, and we haven’t figured out what we are doing. It’s time to make a decision. A decision doesn’t mean we can’t change paths, but we need to make a decision.
Back to our Montessori School. Isabella loves her school. We are fortunate in that with all of her learning challenges relative to reading; her confidence is still intact. At her darkest, she shouts out that she is dumb, but most of the time she is OK. When I ask her where she wants to go to school this fall she says she wants to go back to her current Montessori school. It is familiar, and she feels safe there. They make great efforts to teach her, but it is not a school for language differences, nor do they have multi-sensory reading services delivered with fidelity. It is just a good place with lots of committed teachers that do their best to encourage each child’s strengths. Our daughter needs more than that. She needs specialized services so that she can grow up to be independent and have the necessary life skills to follow her dreams.
Multi-sensory services with fidelity should be offered in every school. Most schools are not set up to deliver those services, so the solutions and costs fall to the parents to figure out, or not.
Solutions and advocacy. I have spent my career creating content for different learners. Some of my time has been devoted to creating content for non-traditional students, but most of my time has been focused on traditional or what some call neuro-typical learners. Creating so-called traditional content is not where I belong right now. I’m tired of just talking and listening. I need to be part of a plan or the action. It’s cheesy, but being up here surrounded by all this natural beauty has given me the strength and courage to share our story.
Teach My Kid to Read. I hope to grow Teach My Kid to Read into an organization. While that is being figured out I will continue to share our story and stories of other families. Continue to follow us to see how services work out this fall, and to learn about other topics related to reading and learning differences. If you would like to get involved with Teach My Kid to Read contact me at: firstname.lastname@example.org
There is our story. Yet, there are so many other stories to tell. Over time, I hope this website can feature tons and tons of stories and serve as a repository to document the heart-wrenching decisions that families are faced with to get their child the correct reading services. While every story is different, with a parent’s awareness I recognize, that there are poignant commonalities between us; we the parents of kids with learning, behavioral and physical differences. We see a hope and resilience and an unwavering vision of our kid as brilliant, perfect and deserving of happiness. Even if there are times that only you see it and people around you are skewing your vision or taking away your hope, you stay on your path. For us, our path is to get our daughter to read, and keep her self-confidence intact in the process. That’s what we owe her.
Keeping our kid’s dignity and self-confidence is the hardest part of being a parent of a kid with a learning difference.
The people I have been meeting this summer are a lot like me. So many Moms (and some Dads) staying up here with their kids. Dorothy was only here for part of the summer, and I miss seeing her smiling face in the morning. Dorothy would leap out of her truck with her young son, Caleb, fresh from the campground where they were staying. Although her son was newly diagnosed with a reading difference, Dorothy was a fountain of knowledge and a bundle of positive energy. I learned a lot from her. Then there is Linda from Australia who found Camp Dunnabeck after an exhaustive search for the right services. We got to know each other a little in an Orton-Gillingham seminar which is like extra-curriculars for those of us in this world of reading and language differences. Someone said we go to the ends of the earth for our kids. Here’s to Dorothy and Linda.
And then there’s people I happen to meet. Each day I take my dog for a walk on a lane that is usually deserted except for the typical wildlife we encounter. The other day a car actually drove by, and stopped. The driver introduced herself as Stephanie. She thought I was one of her tenant’s guests staying in a cottage on her family compound. She was as surprised to see me as I was to see a car. She asked where I was living and I told her where, and that my daughter was attending Camp Dunnabeck in Amenia, New York. As often happens, Stephanie then told me that she was dyslexic and how much harder it makes everything. She was on her way to see a young woman she had mentored for years who had grown up without a lot of parental support, and even at thirty, she was still struggling. As our impromptu/serendipitous/chance meeting came to an end, she smiled perceptively and reassuringly told me not to worry. She said your daughter will be fine. You are doing something here and she has support, that will make all the difference. That’s what we are all doing here. I hope Stephanie is right. #Teachmykidtoread #Dyslexia
The upshot of the neuropsychological assessment is that our daughter should go to a school specific to kids with language disabilities or we should consider home schooling. I apologize for the semantics as I usually say reading or language differences, but this is how everything was presented to us, and this is the beginning of our story. Whether it is a gift, difference or disability can be debated with input in another post.
I was totally floored by this suggestion, and certainly not proud of my judgmental, knee-jerk reaction, but once I saw the price tag of the recommended schools, and the way our lives could be altered, I became what my old corporate vocabulary used to term “guardedly optimistic.” Now, it’s not that I think home schooling is awful. There are kids that could thrive in a home school environment, and for some families, it is a great choice. Look at Sawyer Fredericks, the winner of The Voice. There’s a mature guy. For us, though, home schooling is not a natural or a good choice. Our daughter is social and athletic. She lists eating lunch with her friends as one of her favorite subjects. She thrives being around her peers, and it would be a crime to remove her from a more social setting.
PRIVATE SCHOOLS FOR LANGUAGE DISABILITIES
My gut tells me that the best solution for my daughter is a private school for language differences. Why a school for language differences? She wouldn’t be stuck with me all day, and she would be around other smart and gifted kids with challenges similar to her own, and most important, teachers that know how to teach to dyslexics. Why is it so hard for kids with language/reading differences to get access to schools with teachers trained to teach them? Parents of kids with hearing or visual impairments don’t fight to be taught with sign language or Braille-as far as I know. Why are multi-sensory curricular interventions a fight?
So, in the best scenario, we consider a school for language differences. Here are the challenges we face:
1.The nearest school is an hour and twenty minutes away.
2.The annual tuition is challenging.
3.Our lives could be irrevocably altered.
While a school specific to language disabilities is a great recommendation there’s the issue of our life in a car. Assuming she will participate in extracurriculars, she will have a crazy, long day, and I will be in the car for potentially six hours unless I park myself somewhere in the vicinity of the school, and hang out all day. When would I run? What about our dog? But hey, this is about our daughter and her future.
Then there’s the issue of cost. Unless we win Powerball or Mega Millions, yes, I’m willing to give that a try, we may as well throw our retirement plans out the window. My spouse and I will be paying back the tuition or recovering from our depleted savings until we die or ultimately through all of our assets and savings. The logical solution is that the school district will pay, and I’m willing to take up that fight, but logic has never been my friend, and I’m tired.
Finally, there’s my spouse. While our daughter could easily adjust, with minor complaints, to life in a small town, how would we get through the next seven years being apart? My spouse needs to stay in her job for five more years before she can retire so how would we make that work? Rent a place near the school and then come home on weekends? Buy a house halfway between her job and our daughter’s school? The dog would come with us, but what about the cats? Any choice rocks our world, but there comes a point where the sacrifice is the difference between seeing our daughter thrive versus barely get through middle school or high school.
THE JOURNEY CONTINUES
So, knowing we need all the information we can get to make a decision, on Friday we spent a few hours at The Kildonan School, a private school in Amenia, New York, for kids with language disabilities. Stay tuned!