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One Step at a Time

(Written: April 17, 2018)
Last week we had the privilege of hearing the Drs. Sally and Bennett Shaywitz lecture here in Houston. I had been waiting with baited breath for this lecture and even asked my husband to attend, which he did.
The lecture was just amazing. While I had read Overcoming Dyslexia by Dr. Sally Shaywitz, and a great deal of her lecture was covered in her book, to see it presented in her friendly, motherly style of speaking, taking what can be overwhelming material, and breaking it down into easy to understand examples and language, was, well, there’s really no other word for it than, wonderful.
I loved my husband’s “Ah-ha!” moments that he had throughout the lecture. For, what I imagine to a certain degree was true for everyone in the room, to listen to a lecture that makes you appreciate that dyslexia is a language processing disorder and is not only about reading, was heart-warming.
I loved it even more because of my own personal heart-felt journey through my son’s dyslexia. I call it “our journey” because it affects my entire little family, and for the fact that this is a journey.
My husband and I have turned our lives over to supporting our son and providing what he needs in order to be successful. I manage all of the school meetings and communications, because, in my husband’s words, I know how to play nice and he doesn’t. My husband has managed the lion’s share of the private tutoring shuttling. Considering he leaves the house every morning at 5:30 am, by the time he finally arrives home with our son at either 7:30 or 8 pm at night, it makes for very long days for my husband, but he does it without (well, with very little) complaint.
But it’s more than how much time we dedicate to supporting our son, this journey is truly a journey in every plausible way.
1. It’s the diagnostic journey
2. It’s the emotional journey for you
3. It’s the emotional journey for your child
4. It’s the school journey
5. It’s the emotional journey again for you
6. It’s the emotional journey again for your child, maybe
7. It’s the evolution journey
8. It’s still the emotional journey yet again (insert wine bottle here)
9. It’s still the emotional journey for your child, no maybe this time
Let me explain. (I numbered them so you can track my crazy logic.)
1. It’s the diagnostic journey
I think the diagnosis stage is the hardest for everyone. You berate yourself with questions like:
· How did I miss this?
· How did this get so far out of control?
· Why didn’t my school / teacher say something sooner?
· Will he / she ever catch up to grade level?
· Will he / she ever be able to achieve the dreams I’ve always had for him / her?
· Will he / she thrive or just get by?
· What does this mean long term?
· How bad is this?
· How do I explain this to my child?
Which immediately leads into (because they go hand in hand)…
2. It’s the emotional journey for you
I think the questions above cover the range of questions, in varying forms, that all parents ask, but as parents we still berate ourselves with endless questions in the beginning.
These are questions I’ve asked myself, as well as being questions I’ve been asked, either by concerned family members or parents reaching out for help as they start their own journeys.
During this stage we all make decisions, based on the best information we have at the time, and action what we can, if we can, how we can.
This is the wisdom I’d like to impart to those at this stage of their journey:
Be kind to and forgiving of yourself. Yes, the earlier you diagnose the better, but regardless of when you diagnose, you’ll likely never think it was early enough. You’ve got to let that go and just start the journey, for better or worse, where you are that day. Remember too that you can’t look back and second guess these decisions later. You’ll do the best with what you know at that time. Hold onto that truth.
Which immediately leads into…
3. It’s the emotional journey for your child
Do tell your child they have dyslexia. Give it a name, something they can feel and touch and understand. Not naming dyslexia stigmatizes it and can creates shame within the child. They cannot be afraid of their dyslexia. They may never like it and may always wish it wasn’t a part of them, but knowing that it’s there, learning what it is, learning who they are in this aspect of themselves, and it’s just an aspect, not their whole being, will help instill strength and resilience.
Find, capitalize on and celebrate their strengths. Don’t focus completely on their dyslexia. Celebrate their awesomeness in everything they do.
Start finding what help you are able to find for them (and you). Let them know you are there to support them through this journey. Be prepared for the emotional highs and lows that are definitely coming.
You don’t have to exorcise the dreams and expectations you had for them, but you may have to reshape them.
Embrace the fact that your child will not fit into “the box” that is school, and teach them to embrace it too. Raise a non-conformist so they are ok with not being in the box, with not being just like their peers. Also, you may want to embrace one of my favorite sayings, “C’s get degrees!”
4. It’s the school journey
Whether you’re public, charter or private, this isn’t an easy road for anyone. The road here isn’t unique to anyone on this path, but the roadblocks and supports are variable across schools, grades, teachers, administrators, districts, etc. I won’t really spend any time here because if I do I’ll end up writing a book.
What I will say is read everything you can get your hands on. Create and nurture a support network because you’re going to need it for anything from emotional support to assistance in research to advocates and lawyers.
Read and ask questions. Don’t believe everything you’re told (especially from the school). Question everything. Take nothing at face value. Trust your instincts. And above all, remember this is your child and you know what’s best.
5. It’s the emotional journey again for you
There are a few key things to remember here.
The first is self-care. As women we are especially poor at this even if our kids are “perfect.” In the dyslexia journey you will need to remember to carve out self-care time for yourself, and tell yourself its ok. If you don’t care for yourself how can you care for others?
The second is don’t forget your significant other. You and your other need to carve time out for yourselves as a couple. You need to build each other up. You need to support each other when the emotions win and you just crumple on the floor and shut down.
The third is it’s ok to burn out. This is a journey, not a sprint. You’re going to crash and burn. Be ok with that. Learn to recognize the signs. The last time I burned out I didn’t even realize I had until it was pointed out to me by one of my fellow dyslexia warriors. She read between the lines and her observation brought me to a complete stop. It took a month before I could face anything dyslexia again, and that was ok. It didn’t go anywhere, it was waiting for me. After a month I was able to pick myself back up again, less heated and definitely more calm, and keep going.
6. It’s the emotional journey again for your child, maybe
I say maybe because it depends on your specific journey and the age of your child at the point of diagnosis. Bear in mind the statistics for co-morbid issues and the emotional toll this journey takes on our kids who are attending schools who, unless you’re in an LD specific school, isn’t designed for our dyslexic children. Resilience is learned through trial. Trials will come with emotions. Depression can be a real part of this journey. PTSD can be a real part of this journey. The risk of suicide can be a real part of this journey.
Just be cognizant and supportive. You know best what your child needs. This journey will tune you in even deeper into who they are as people. Be mindful of where they are and what’s going on in their lives. Don’t be afraid to embrace therapy / counseling, even at a young age, to help build resilience, emotional intelligence, emotional coaching, self-awareness, self-calming skills, mindfulness, etc.
For my family we are embracing our religious supports even more. I’ve searched for a church with a large and strong population of children so my child can have, not only a relationship with Jesus Christ, but also with peers his age who share his beliefs and love him for who he is, within the bounds of faith.
7. It’s the evolution journey
This is the stage where my family is right now.
There are evidence-based instruction methods for dyslexia, but the thing to remember again is, dyslexia is a language processing disorder, not just a reading issue. These instruction methods will build on certain aspects, sometimes in isolation of each other, and you may begin to see some parts getting strong, some crutches developing and other issues being left untouched probably because they’re focused on later in the program.
If this is where you are ask questions of your tutors / teachers / program administrators to understand as much as you can, and don’t fear making adjustments in your remediation plans, in order to best support your child.
I’ll give you an example via our personal journey. My son is being remediated with 4 different programs, Neuhaus, DIP, Phonics Boost and Lindamood-Bell. Note the last one was our initial remediation method and one I keep in my back pocket for possible future remediation. Neuhaus is what we do privately and DIP and Phonics Boost is what our school uses.
This is the result of the last Lindamood-Bell evaluation (03/2018) which is conducted annually every spring semester:
He’s developing in an interesting way and it’s evident what skills have been focused on at the sacrifice of others to get him to where he currently is.
His phonemic awareness is at a grade equivalency level of 5.7 so he’s a full 2 years ahead of where he should be. His language ability is high (we knew that). His expressive vocabulary is at slightly above his current age at 9.6 (he’s currently 9.3 in age) and his oral language is at a 10.3 age ability. His ability to follow oral directions, when visual queues are present, is in the 91st percentile, meaning really high. With visual queues he’s able to process 7-step directions without error. We discussed the visual aspect of this exam and how that’s not true when visual queues are not present and it’s recommended that when being given oral directions, to try to coach him to visualize the things he has to do and see if that will help his ability to process oral, non-visual directions.
His ability to word attack, i.e. see a word and read it, is very weak. He has some difficulty with vowels and 2 or more syllable words. He doesn’t have the decoding ability to do this. Note that at 3 and 4 syllable words you’ve conquered most of the English language.
His comprehension is strong because he relies so heavily on his phonemic awareness and his personal vocabulary but because his symbol imagery is so poor he doesn’t commit words or sounds to memory, like sight words. He works to decode them instead so it slows down his fluency and impacts his accuracy. His vowel substitutions (his vowel weakness) and word substitutions (guessing at a word by filling in from his vocabulary) are part of the problem and too sometimes his decoding fails him and he has errors because he eventually becomes fatigued with the effort. If the passage is beyond his ability he files through it because he doesn’t have the tools to correct himself and then his comprehension fails him because what he read doesn’t make any sense to him.
His reading comprehension and his listening comprehension are 2 years apart with the listening comprehension being the higher of the two.
He’s able to hold 5 letters or up to 5 units of language in his brain, for example the word “station” when asked to break the word down he can say “s t a tion,” but anything beyond that fails him. This is symbol imagery and he’s a full year behind where he should be. The keys to success here are quick less labored vowel identification and quick less labored word ending identification.
His spelling is fascinating! When asked to spell the word there’s no symbol imagery for him to rely on so he sounds out the word in his head which is why he spells phonetically and since it’s perfect from a phonetic point of view he literally CANNOT recognize that it’s wrong.
So the crux is we’ve done a fantastic job from a phonetic point of view and he’s drug himself to where he is with the skills he has in place, but he’s not tying it all together. The focus needs to shift from phonetics to strengthening his symbol imagery and word attack skills. If those two can be strengthened he can become a successful reader.
This is a child who 2 years ago could say MOST of the sounds of the letters of the alphabet, but not all of them and certainly count not blend 2 letters to make a sound. In other words, at grade 1.7 he could not read at all.
Understanding how your child is learning and what strengths are developing and what still needs focus, will help you adjust the supports in place to allow for continued development. If you can seek outside testing to help support this evolution, wonderful. If you cannot, know that under an IEP plan you will reevaluate your child every 3 years.
8. It’s still the emotional journey yet again (insert wine bottle here)
Fall down, cry or vent, stand up, dust off, march forward, repeat.
9. It’s still the emotional journey for your child, no maybe this time
I can’t stress the emotional piece enough. Stay in tune with your child. Do what you have to. Don’t think you have to explain or justify yourself to anyone, if it supports your child’s emotional needs.
If supporting your child means sacrificing program fidelity, or remediation for the short term, or taking the summer off, or hiring a therapist or moving schools or districts, do it and don’t apologize. It’s our job as parents to love and support our children and to give them all the tools they need to be a successful adult.
Hug. Cuddle. Laugh. Play. Read to your child. Listen to a book with your child. Play a video game with your child. Dance. Sing. Hug, laugh and cuddle more. Celebrate everything they are. Do your best to build a world without fear.
Build within your child their own strong advocacy voice, because they will grow up and they’ll need it.
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