Tuesday, October 23, 2012

Down Syndrome and Dyslexia

People don't know I have dyslexia unless I tell them, now you know.  It's not ha ha, I didn't read something right or mixed something up or said something wrong, joking dyslexia.  It affects my day to day life, a huge struggle, some days I wake up and literally can't read, extremely uncomfortable to talk about, dyslexia.  I have been thinking about writing this post for three years because I believe this experience shapes the way I relate and react to situations with Claire and have only now got up the courage so here goes...

Encouraging Claire to do her homework gives me flash backs.  Seeing that look of struggle and torture in her eyes I want to say, I know how you feel Claire, honey, I really do.

Growing up my learning disability was not diagnosed, I was just "slow" but still managing to get good enough grades with little tricks I taught myself.  My school aged years were spent trying to look normal in class praying no one would ask me to read (actually I still do that, Dear God, please don't have anyone make me read out loud, amen) and crying at home because learning didn't come easily for me.  I vividly remember watching my teachers walk over to pick up the class room phone by the door with that look in their eyes, we both knew it was the resource room pulling me.  There is something about embarrassment that burns memories into your mind.  Completely humiliated I would walk out and go down to just stair at books by myself. (It is different in schools now but just fifteen years ago dyslexia wasn't a disability they knew how to help, it wasn't even on the list of disabilities.)  Reading was very hard and no one was actually helping.  I thought, Okay, my mom makes me do this at home.  I know I can't read well, how is pulling me out of class to read by myself and getting farther behind in my other classes helping?  I was so angry on the inside.  Whenever I had a teacher or volunteer "helping" me they were giving me a test to check my progress which made me so nervous I could have thrown up.  I read so much worse under pressure, I still do.  I had fantasies of screaming at my resource room teachers "I hate you!  Let me go back to my class!  This is pointless!  I read by myself at home!  As if junior high isn't embarrassing enough you have to send me to special ed!"  but I never did it because I was a very respectful girl and these were my Mom's friends (my mom worked at the school).  I do remember weeping to a history teacher one day after school because I was so sad about getting pulled from her class and missing out. I really liked Mrs. Brock; I really liked most of my teachers.  Unfortunately, I'm sure I did scream at my poor mother trying to help me at home, sorry Mom.

It's hard to explain; to me, reading feels like work, running up a rocky hill in the rain.  It's pushing through, it doesn't just happen.  Dyslexia doesn't just effect my ability to read, I also struggle with math, spelling and recalling information.  I'm reminded every day that my mind isn't taking in information correctly.  I can't read off long numbers without getting them muddled, like "hey, Tami, what's that number?" (this happens to you more then you would think, trust me!) and I'm looking at it and they are looking at me or even worse I'm on the phone. I have to read it a few times, very slowly; numbers mix so badly.  I get my daughters, Alice and Claire's names mixed up when I read because they contain the same letters.  Didn't think about that one when we named them.  Also, What was that person's name I just tried so hard to remember?? can't remember.  Or, how do I get to that place in my home town I've been to 20 times but just not in the last six months?? I can't recall.  Digital clocks are kind of my nemesis enemy because the numbers are square, it's so bad!  Sometimes I am late because I read a 5 as a 2 and even double checked but didn't realize until what I was taking to be a 2 turns into a 6.  I sight read everything because sounding words out is agonizing when you can't see the order of the letters...

Thinking about my childhood, dyslexia, my mom is hard.  Now I'm the mom with the child getting pulled to the resource room.  I attach my own baggage to special education.  It's not the enemy, right?  I'm not confident Claire is going to get the help that will work for her at school because I didn't.  I'm afraid it's a waist of time.  I'm afraid I wont know what to do to help her learn because no one knew how to help me.

I also see how these experiences have been a blessing.  I felt like I would loose my breath weeping over my battle with dyslexia but never did because Mom was always there, holding my hand. She couldn't take it away, she couldn't fix me but her love comforted me.  She was always there to listen and help the best she knew how.  I am so grateful for my mom who did all she could to pick me up, restore my confidence, bless me with a prayer, forgive me for taking it out on her.   Now I know what it is like to be the daughter and the mother and that is the mom I want to be for Claire.  I'm not going to be able to make everything better but I want to wipe away her tears, pray for her, hold her, comfort her, help her move forward.  Mom, you taught me how to live on even in the face of thing I can't change.  What a beautiful gift.

We all have battles, no one lives without them.  I have made peace with this one.  I don't feel stupid anymore.  Although, I do admit I have spent the better part of my life believing that is true.  I wanted to share this because it's an important part of my story and what has made me who I am today.  As much as I fight to not let my life and choices be defined by dyslexia any more I don't want Claire's life and choices to be defined by down syndrome.  I want her to try, even if it's hard, even when people say it can't be done.  Dyslexia has kept me from so many things, the fear of failing.  It could have kept me from writing this blog.  I am so glad that God has given me the courage and gift to write, even if He didn't give me the gift of spelling.  It gives me courage, watching my little girl take on her challenges.  I don't want Claire to be ashamed of who she is.  I have spent so many years hiding what makes me different, what is hard for me.  That's not the example I want to set for her and in just the last year I feel myself braking free from that shame.  Down syndrome is beautiful to me, and I never thought I could see any beauty in dyslexia, thank you God, now I can.

 my girl and me

Nate, he's totally out numbered and loving it! 
Four beautiful girls to dance with at the wedding. 


  1. I'm so unbelievably happy to read this. I can't tell you how many times I have marveled and thanked God that the girl who has never been friends with reading/writing/spelling had the courage to write a blog. Because you, my dyslexic friend, are one of the most beautiful writers I've read. It's not just that you have beautiful things to say, which is rare enough, but that you say them exceptionally well.

    In a society where the slow readers are "stupid" and anyone different is "retarded," the ability to relabel yourself is miraculous. Like, give-me-tinglies inspiring. :-)

    I'm not trying to be over-dramatic or flatter you, I'm actually very serious. I'm so crazy proud of you-I'm proud to know you!

  2. Amazing post Tami. Thank you for being so honest! You are a fantastic mom, and just what Claire needs!!! Thanks for sharing!

  3. Beautiful post! I love your honesty.

  4. Thank you for sharing. I appreciate what you have written. Just figured out that one of my boys (and possibly a second) have dyslexia. I also have a dd with Down syndrome and I'm wondering if she might have it too. It helps me to hear how this made you feel and will hopefully give me greater empathy. Thank you.

  5. I remember beig in secondary school & trying to hide in different seats in the class. I didnt want to read out loud & i was trying to be inconspicuous. But the time would come when some teacher would adk me to read out loud. Sometimes from where i was sitting & sometimes i had to stand facing the class & read. I remember trying to read the words, the letters.i had to focus real hard to try & read & i was trying to make each sentence seem fluid, just like anyone else would read. I was able to read the words but i didnt know what i had just read. Ie, i wss trying so hsrd to read & couldnt process the letters / words. Normally i would have to read slowly, in my head to be able to try to process this information in written form. I never told anyone the following but its true. I would feel like i was reading, dizzy, euphoric, light headed & i would feel like i was real close to fainting / passing out. It was like i was given an injection of some drug which made me feel totally out of my head. The act of reading ..out loud was doing this to me & i had to do it or face the consequences in class, infront of my fellow students & the teacher. I had to read out loud to be one of them or i was a reject / someone who couldnt read. Lastly i remember always having an out of body ecperience when i was rying to read infront of the class. I knew it wasnt something i would normallly attempt as im not good at reading out loud fluidly. I was like a spirit / invisible clone of myself hovering above my head, looking down at myself in the clasd room, trying to read. My spirit would fly back into my body when i was told to stop reading. It was hell & i wasnt even diagnosed dyslexic until my late 40's. My teachers & all of my fellow class mates just asdumed i was slow, very bad at school, everything school threw at me / everything i was askef to do in school. Everything. No one could focus on the one thing i was good at. Art. Its as if it didnt matter. When you see someone struggling to read, struggling to memorise / remember written information, poems, lyrics, names, dates, facts, etc ..the chances are they are dyslexic. Theyr brain isnt taking in this type of information & processing it. Maths included / numbers, numerics, dyscalcula. There are sime dyslexics with brilliant memories & they are good st maths / numbers. Great, but the ones who are struggling have their own type of dyslexia & its obvious there is something wrong, wrong with their brain processing & they should be given time & helped, nurtured. Or even better they shoukdnt be forced to read, procesd information which is difficult for them, if they dont want to. They should be sdked about what tey like to do, what they like to study, ie, art, etc & they should be given a special concession to study what they are nsturally intetested in & what they sre naturally good at, so they dont have to waste time trying to study words / subjects, info which will never stay in their heads. Me thinks, re, my experience. Words of wisdome ..to use time valuably !