First, take a deep breath. Give yourself heaps of grace and self compassion. When we discover or confirm a new diagnosis for one of our children, there can be a lot of emotions. Even if you totally saw it coming, there are emotions. It is common to feel guilt: “Why didn’t we figure this out sooner?” Sadness as you mourn the future you envisioned for your child, as you see that life and future possibly recalibrating. Additional guilt for the sadness because your kid is amazing and you are not disappointed in them, so maybe it is wrong to feel sad. You could also feel happiness or relief with having found a course of action for going forward, and a diagnosis that resonates for your child. Overwhelm. Please know, all of these feelings are normal.
Let’s start with the “I should have done something sooner,” thought process. This is common and I have done it with almost every new diagnosis for my family. However, it is a bit of a lie or myth and I hope you can remind yourself of that. You are doing everything for your child that you can. When we have new information, then we make shifts. But before that, we didn’t know any better. You are doing amazing! Did you know 80% of dyslexic children transition out of school without ever having been identified? So, statistically you are already ahead of the game!! When it comes to feelings of sadness, it can take time to process a new diagnosis and what it all means for your child. Wrap yourself in compassion and allow yourself a little time to mourn what could have been. Then, take another deep breath and let’s move forward with the new Here and Now. You do not need to feel guilt over feeling sad. These are normal feelings.
With the overwhelm, let’s go over some next steps, together. The first thing a parent may want to do is read (or listen to) a book to learn more about dyslexia. But, what book?! There are so many. I recommend The Dyslexic Advantage, by Brock and Fernette Eide. This one is so important to read early on, because it will educate you about the strengths of dyslexia. Dyslexics tend to be bright, creative, outside-the-box thinkers. They spot patterns other people miss, and tend to have strong visual-spatial skills. A high percentage of entrepreneurs, artists, architects, musicians and inventors are dyslexic. Your child has officially joined an amazing roster with the likes of Albert Einstein, Thomas Edison, Andy Warhol, Pablo Picasso, Mohammad Ali, John Lennon, Gwen Stefani, Tom Holland, Jennifer Aniston, Keanu Reeves, and a full half of the original “Shark Tank” investors: Kevin O’Leary, Barbara Corcoran and Daymond John.
Dyslexia really is a super power, but I know you may not be ready to hear that, yet. Give it time.
When I suspected Dyslexia for my youngest child, it felt like a Tsunami approaching. It was a gulf that from my perspective, would stop him from accessing the life I saw all the typical children around us experiencing. I met with a specialist and she told me when she was pregnant, she had actually prayed that her son would be dyslexic. Her words sat cold and still in my stomach like a cement block. At that time, they did not resonate with me in any way. But, she was right. Dyslexic people are really amazing, even if the journey to access reading is much more difficult. Another great resource to get a full picture of what dyslexia means would be www.madebydyslexia.org. A lot of the information is presented in short, bite-sized videos, and they take an affirming perspective. The psychologist we worked with suggested I read (or listen) to The Dyslexic Advantage before I shared the new diagnosis with my child. I found this to be great advice, as it helped me present a full picture of what it means to be dyslexic.
As you begin to think about how to share information about dyslexia with your child, I have some resources. Some of the Made by Dyslexia videos could be great to watch together. I suggest you pre-screen them. The book, Fish in a Tree, by Lynda Mullaly Hunt, would be a great read aloud or audiobook to read together. My youngest son really liked the Dogman books. Author Dav Pilkey has dyslexia and ADHD, and there is a small blurb about his neurodiversity in the back of each of his books. I brought this up when I explained to my son his Dyslexia. My son was like one of his favorite authors! If you have an older kid, the protagonist in the Percy Jackson books has Dyslexia and ADHD. These could be great to tackle as audiobooks. Don’t hesitate to utilize loads and loads of audiobooks! Science informs us that listening to books is just as good for your brain as “eye reading.” Also, audiobooks will lower the Matthew Effect by closing the gap. The Matthew Effect (first coined by Sociologist Robert K. Merton in 1968) in regards to reading is the idea that a child who struggles to read will then in turn have lower comprehension skills and vocabulary, due to less exposure to literature. It is the mentality of “the rich get richer and the poor get poorer.” Listening to books helps keep a child’s vocabulary and comprehension skills high. Remember too, that an audiobook is a wonderful gateway to allow your child the opportunity to learn to love books. Look for ways to give access to books without constantly funnelling everything through your child’s deficits. That way, they can thrive! Podcasts are another fun and interesting way to boost your child’s vocabulary and comprehension skills. For an elementary aged child, try Wow in the World, Brains On and Smash, Boom, Best.
Consider a couple of great family films: Rescued By Ruby is based on a true story, and stars a character who has ADHD and Dyslexia. True Spirit, starring Anna Paquin, is another true story highlighting a dyslexic teen. Remind yourself and your child that they are not alone. Did you know that approximately 1 in 5 people are Dyslexic?
If you haven’t yet, now would be a good time to request an IEP or 504 from your school district. Make sure to keep all requests in writing (email) and don’t limit the email to your classroom teacher. You will want to include the principal or vice principal, the school psychologist, as well as the district director of Special Education. An IEP is necessary if your child needs extra reading help or any kind of modification of curriculum. It will also provide goals of progress for your child, and accomodations such as frequent breaks or extra time on assessments. A 504 provides accommodation only, so no tutoring, no intervention, no goals, but things like the breaks and extra time are given. If your child needs tutoring, the school should provide it. You would request by email (it must be in writing!) or in an IEP meeting to discuss it. Dyslexics need a specific kind of reading intervention. Schools don’t always offer it readily, which means you might need to advocate and push for it. That is a gentle way of saying you may need to fight. Orton Gillingham intervention and programs based upon OG tend to be strong and dependable: Orton Gillingham, Barton, Milan Method. I’ve also heard good things about Lindamood-Bell and Slingerland.
It is very important that they utilize a true dyslexia intervention such as the ones listed, and also that the instructor is certified in the program. Certification is a thorough process and cannot be completed in a one-week workshop or in a training weekend. Ask for their credentials. If you decide to hire a private tutor, I had a great experience finding one through www.ortonacademy.org. Go to the Parents page and request a listing of local tutors. It will list each tutor’s level of certification. Other options: Barton is designed so that a parent can watch the videos that come with the curriculum and work with their own child, if needed. Outside of intervention through the school, Barton with a parent is probably the next most affordable, legitimate answer. Other parents choose to become certified themselves, through Orton Gillingham. In that situation, not only could you work with your own children, but you could consider taking on clients as well.
Remember, a school can deny your request, but that does not mean you are on your own or that they are right. Here are your next steps in that situation:
- Keep your requests and the communication by email, so that it is legally documented.
- Email a “team,” not just one person. I suggest: the principal or vice-principal, school psychologist if there is one assigned, the child’s teacher, and the district director of Special Education. Later, if they continue to deny your requests, then cc in the superintendent of the school district. Check if your district has a Special Education Liaison. This person can also help guide you. Keep in mind that they are employed by the district.
- You can use the word “dyslexia” with the district, but also use the phrase, specific learning disability in reading. This is because not all school districts will acknowledge or agree to treat dyslexia, but legally they must acknowledge and treat SLD. This is an umbrella term that dyslexia falls under.
- If they deny your request, make sure that they have done so in writing, via email. Not verbal, as otherwise there is no legal documentation. At this point, you have a few more options. We are not done yet!
- Hire a private educational advocate to advise you and speak for you to the school. Find out how to get an advocate HERE.
- By email let the school in writing know you disagree with their findings (their decision that the child does not need intervention) and you are requesting an IEE. This is where the school must pay for you to seek out the second opinion of a private psychologist or other specialist.
- Final option: seek an educational lawyer to advise you. This sounds daunting and it is expensive. But if you have everything in writing up to this point, you have a strong case. If a school continues to deny you services, they may be required to pay for your child’s private school placement.
As you work with the school, it is all about legally documented communication to your team. Remember that they all went into education because they want to help kids. The school is a wonderful resource. Following these steps will help ensure your child does not slip through the cracks.
Look for local in-person support groups around Dyslexia and learning differences. Join some Dyslexia facebook groups. Other helpful websites include, www.understood.org, www.additudemagazine.com, www.dys-add.com. Last, dyslexia is very hereditary. Sometimes a child is diagnosed, and then the circle widens as parents, uncles, siblings, grandparents are identified after the child’s Dyslexia diagnosis. We experienced this in our family. Don’t be surprised if more diagnoses surface, and remember it doesn’t change anyone- it is just new information on how to help them thrive. Let’s do a quick recap of the highlights:
1. Take a deep breath and have lots of compassion for yourself.
2. Read The Dyslexic Advantage, by Eide, et al. Check out www.madebydyslexia.org.
3. Resources for your child: Audiobooks. Fish in a Tree by Hunt. Older kid: Percy Jackson.
4. Request by email an IEP or 504 from your school district.
5. Look for support groups to join, both online and local.
6. Keep your eye out for more dyslexic individuals in your family.
7. You are doing great! You’ve got this.
For a list of these and additional curated resources, see my past Dyslexia Resources blog HERE.
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