Author\’s Note: I wrote this after an especially difficult night at our house. They are not all like that but when they are it can be really emotional. I wrote this while wounds were fresh as a stream of consciousness. I intentionally left if mostly unedited because sharing vulnerability helps others know they are not alone. So forgive me if some thoughts were unfinished or topics seem incomplete.
Having a child with dyslexia is hard. It’s hard for the child and it’s hard for the parent. Today I’m going to focus on why it’s hard for all the mamas bears who have advocated and fought to get their child what they need.
It’s not hard in the ways people probably think of dyslexia being hard.
Yes, the children have a harder time learning to read and write but with the appropriate intervention, children with dyslexia can learn to read.
It’s hard because we watch them struggle.
It’s hard because we can’t do it for them, we can only support them as they learn.
It’s hard because we know most people don’t understand what dyslexia really means for a child, which means they will misunderstand our kids.
It’s hard because not only are they having to spend time working on reading when their siblings and friends get to do other things.
It’s hard because even on a good day they are struggling with internal and external distractions that pull their attention away from reading.
It’s hard because their well-meaning teachers have taught her bad habits like looking at pictures for clues instead of learning to decode the word.
It’s hard because now I am constantly saying “Look at the word, baby.” As she looks away from the paper that has her answer (if she could decode it) and guesses because that’s what she learned to do in school.
It’s hard because reading lessons at home can end in tears.
It’s hard because she just can’t sit still even with the new sensory seat I bought.
It’s hard because a mama shouldn’t also have to teach reading, yet here we are in COVID lockdown and face to face intervention isn’t available right now.
It’s hard because I shouldn’t have to fight with her school to get appropriate services or wait months to hear back from the Director of Special Education after sending in a request for Prior Written Notice.
It’s hard because the school-based SLP refuses to work on anything related to phonological awareness or sound/word awareness at the Referral meeting- before the evaluation has even been completed.
It’s hard when she starts crying because I tell her she isn’t giving her best effort and I’m getting frustrated and then the mom guilt sinks in.
It’s hard because I wish I would carry this for her.
It’s hard because I feel slightly obsessed with learning all I can about dyslexia in an effort to help my child succeed and so sometimes that’s all I seem to talk about when I call my friends.
My wonderful friends who have listened to me talk and talk and talk and then given me a shoulder to cry on.
It’s hard because I had to tell my child this is something you will struggle with your whole life. It will get easier as you learn more but it will never go away.
Yes, there are many wonderful things about children with dyslexia….they are typically very bright and imaginative and visual thinkers and have lots of ingenuity but remember this post is for you mama.
You already know all those wonderful things about your child but it’s hard because we constantly worry that no one else will see past their struggles.
Will her teacher appreciate my child’s amazing imagination and problem solving skills while trying to manage a classroom full of children or will all she see is a child who struggles to sit through a day at school and needs extra help/accommodations to complete basic classroom work?
Will her teacher remember that she has language processing issues and often needs directions repeated or will she just see a child who “doesn’t listen”?
Will her teacher recognize a child who doesn’t fit the people pleaser profile or label them a behavior problem because she responded with a threat to call home with “When you gonna call?”….Could it just be that my sweet Kindergartener thought it was cool the teacher was going to call and talk to her mom and she didn’t intend to be disrespectful?
Will her teacher recognize her leadership skills or see her as a bossy kid because she’s an independent thinker?
I don’t know the answer to all those questions. What I do know is that on some nights it’s too hard to teach reading and be the mom. So tonight when my sweet child started to cry, I just pushed the table away and held out my arms to her. We snuggled at the table and I told her I loved her, which is what she needed to hear from her mama- not mama the reading instructor.
Sometimes we just need to hold space for our kids. We need to love them and support them and let them know we will always be there for them.
That it’s okay to fail- that’s how we learn.
I have to remember that myself during my mama guilt moments.
My mom tells me that God gave me Amelia for a reason- because I am the best person to love her in this world and support her in her struggles and in her strengths.
My aunt, who also happens to be a licensed psychologist and travels internationally speaking to teachers about how to teach children, listened to me (unsuccessfully) try and hold back tears on the phone one day and said to me “Amelia is flying. Other children are swimming. They just don’t match right now.”
I liked that. It made me feel much better and I like to think that it highlights that she just has a different skill set. A skill set is just as wonderful as other kids, just different.
The problem is that I send her to school in a district that only teaches kids to swim, not fly.
They teach a method of reading that simply does not work for children with dyslexia. All the research agrees that children with dyslexia need to be taught to read using an explicit, systematic, cumulative and multisensory approach to reading.
Here’s the really cool thing- that explicit, systematic, cumulative and multisensory approach to reading teaches kids who are flying and kids who are swimming! It would benefit all children, not just those with dyslexia.
Why then is it so hard to get appropriate reading instruction in the schools?
I hear you, mama. I’m there too. I support you. I support any parents and teachers that are advocating for appropriate instruction at school so it doesn’t have to be so hard at home.
I’m willing to fight and do the work. I’ll talk to anyone who will listen about the changes that need to be made in our schools to help children with dyslexia succeed.
I just want to make sure I’m mama first. A mama who shows love and support while challenging her kids to do better, be better. Not necessarily in their performance, in their effort and attitude.
Praise their effort and the performance will improve.
Each night that Amelia and I pray together, part of the prayer she repeats is “Thank you for helping me to be a hard worker, help me learn something everyday, and help me to be kind and respectful.”
Dear God, help me to be the best mama I can for this child.
