The Importance of Literacy

 I am a huge, huge, HUGE advocate of literacy for children with disabilities. For everyone, really. I know, most people will say "Of course, everyone should be literate" but I am not talking about merely being able to read a few words. 

What I want for everyone is to become addicted to books! I want people to fall so deeply in love with books that they cannot wait to pick up their next novel. When I hear people say that they read a single book the entire year, my head just about explodes. Read a couple chapters every day! 

So real quick about disabilities, then I will go off on another tangent about boys and reading. 

Disabilities and Literacy

Being real here- my older daughter has an IQ of 41. She struggles to learn, period. And reading is a complex skill! It involved decoding and understanding what the words are saying when they are all together. But guess what? She is reading. And writing. In fact, she carries around notebooks and if people don't understand what she is saying, she will write down a few key words (usually spelled correctly!). It opens worlds of possibilities!

Benefits of Literacy:

1. It gives pleasure. It provides endless hours of being lost in a good story and letting your imagination run wild.

2. Literacy gives power. Especially for a non-verbal child, being able to write down what they want is a HUGE tool they can use! 

3. It opens up more possibilities. If I can give a list of things Chelsea needs to do, that helps accommodate for her poor executive functioning skills. Heck, I use a to-do list every day because I can't keep track of everything!

Let's get down to it- how did I get Chelsea to read after the doctors told me it would never happen?

1. READ ALOUD! We read aloud for a minimum of 30 minutes every day. Some days (holidays, etc) it would be a couple hours. We read Berenstain Bears Go To School at least 1,000 times. The Very Hungry Caterpillar was more tape than pages. I had to replace several books after they were too well-loved to be read anymore. 

2. For Chelsea, we never bothered with teaching phonics and the "Top 100 Sight Words". A lot of English doesn't work with phonics anyway, and the top sight words hold NO meaning for a child with an intellectual disability. Words like "the", "or", and "if" are terrible words to teach to a kid who still can't tell the difference between a duck and a chicken. So instead, we used the whole word approach. I made a list of all the words that held concrete meaning for Chelsea, and taught her those. We learned "Mommy" and "Snow White" and "puppy". And she picked up on it SO fast!

3. We model reading and keep books available. At home, we make sure that everyone has books (physical books, not digital!) accessible to them. Everyone has a bookcase in their room, and we have several in our living room. We keep a couple dozen books in the car at all times. I don't care if some of the books get torn or ripped by accident. I'd rather them be read and worn out than pristine and never opened. 

4. Never give up! I started reading daily to Chelsea the day she was born, and really started teaching Chelsea to read when she was five years old. She is now close to 11 years old, and is just now really catching on. So it took years and years of persistent, consistent effort, but it is paying off big time now!

BOYS AND LITERACY

We talked about literacy and disabilities a little. Now let's transition to boys and literacy (major soapbox of mine). There is an assumption that boys don't like to read and don't enjoy school. There are a lot of problems when it comes to boys and books, particularly in America, so let's break it down:

The Problems:

1. School is not designed for boys. Schools are designed for girls. Biologically proven- boys and girls do not learn the same. Don't give me the PC crap- I have taught, and I stand by it- Boys and girls do NOT learn the same, and it is silly to try and teach boys the way you teach girls. Girls will sit and do flashcards. Boys will throw flashcards. As small children, girls will sit calmly and listen to books. Boys will squirm away and run off. Which brings me to point #2-

2. Boys have shorter attention spans. At least when they are young. Parents often lament that their boys won't sit and listen to long stories, and then assume the boy isn't interested in books and give up, or else hate every second of reading to their son because it isn't fitting the picture they had imagined of reading to their child.

3. To go along with #1- the majority of teachers in school, and especially elementary school, are women. Female teachers pick out books that THEY like (not bad ones! I love the ones they pick! But also- I am a girl). Boys and girls like very different books.

4. Boys don't see their dads/ men in their life read. This is a huge, huge issue. If they only see women reading, they will assume reading is just for girls.

My thoughts on solutions:

1. Boys are action-oriented and love to be competitive. When I was teaching my son his letters, I drew letters on the sidewalk in chalk and had him run and jump on them. I wrote words on cards and posted them around the house, or around the playground, and handed him a flywatter and would call out words for him to go swat. Words that HE was interested in. Because who cares about hitting the word "and" when you can hit the word "Gaston" or "sword"?

2. Get some strong male role models that show reading. This could be magazines, audio books, fiction, non-fiction... ALMOST any book out there (more on that in a second). Then have conversations about those books around the dinner table. Or while out fishing. Show them that REAL MEN read. And you will need to build up the "reading stamina" from 2 minutes of reading time until they can sit for chapters upon chapters.

3. Okay- not all literature is equal. I hate the garbage comic books/ grraphic novels/ picture books about butts and poop and farts, etc. etc. Give boys books that are engaging and thought-provoking and that prove to them that real men aren't crude. Real men are intelligent and strong and chivalrous, and don't need to stoop to reading books that encourage poor behavior. Boys will perform to the standard to which you hold them accountable. It is good to have high expectations!

4. Give them good books. This could be books about sports legends, about medieval war machines, about dinosaurs, about famous battles, about rules to games. This could be fiction books with strong protagonists that are action-packed, but for goodness sake give them books and give them often!

5. Surround them with books. I get the line "They will destroy the books if they are left out." a lot, and to that I say "Yep, it will happen. But would you rather have boys that read at the cost of a few books?" Easy answer in my mind! So put books (REAL tangible books! Not the ebook stuff- more on that in a minute too) all over. In their bedroom, in the living room. Put trivia books in the bathroom, have the car seat pockets crammed. Visit the library at least once a week for an hour and browse. Read read read read read read.

6. Stop with the devices!!! This is my other big soapbox. Screens are to candy what books are to vegetables. Of course a kid will pick video games and television over reading! Our brains are programmed to look for the digital stimulation! Kids will likewise pick ice cream over asparagus any day! And did you know that the longer kids are exposed to screens (particularly interactive screens like iPads and video games), the more it stunts their brain development and decision making and executive functioning? So yeah, a little bit of candy doesn't hurt anyone, and a little bit of screens won't hurt. I am all about family movie night on Fridays. BUT- it shouldn't be a steady diet.

7. Read aloud. It is very difficult for kids to read when they don’t have adults reading aloud to them. So read Harry Potter out loud. Listen to audio books in the car (they are trapped and can’t get away, mwahahaha), read picture books! You would be astounded how often parents stop reading to their kids when the child can read themselves. But everyone loves a good story! I am in my 30s and I like people reading to me! Reading aloud helps kids know how to read fluently with a good rhythm. Read poetry. Read non-fiction. Read fiction. If they ask a question, look it up in the encyclopedia, not just google.

And for further reading on this topic for adults, I recommend:

Boys Adrift

Boys Should be Boys

Gender Matters

Read Aloud Handbook

Glow Kids

Special Needs Mamas- GET HELP!

 

This week, I went to my endocrinologist. I have hypothyroidism and finally started getting treated for it a year and a half ago. 

He looked at my numbers and meds, then put down his clipboard and did the whole doctor face thing. He raised his eyebrows and said, "Okay, you have to tell me. What are you doing different?"

He went on, "In the last year, you have lost more than 30 pounds, your heart rate and blood pressure are perfect, and you are much happier- I can tell. I know I am good at treating hypothyroidism, but I'm not THAT good. So tell me what it is." 

And I told him, "I finally got help."

I GOT HELP. Real, actual, long-term help.

Two years ago, I was drowning. Chelsea was still smearing poop every day. She had major behavior problems, and Lily had been recently diagnosed and was still a baby. I couldn't see the light at the end of the tunnel. I was completely and utterly depleted, and had NOTHING more to give. I had burned myself out. I had no joy left and lived second to second.

"Just get help!" people told me. To which I always responded "HOW???" 

How on earth was I supposed to find the time and energy to research respite programs, fill out the hundreds of pages of paperwork (I wish that was an exaggeration!), call all the numbers (after hunting them down!), and then follow-up with each agency??? I was just trying to keep up with the insurance calls and ARDs and paperwork and behaviors and therapy! 

How was I supposed to have 5 minutes during the day for myself when I felt like I was just managing one crisis after another? I didn't have time to fill out paperwork and dig up social security cards when I have to watch my kids every second of every day for seizures and still pack therapy around cooking special diets and driving to dozens of doctor visits. 

My children consumed all of me. I cried almost every day, not from sadness of what my kids were going through, but because I was so, so tired and overwhelmed. It got to the point where I got on medication for anxiety and depression. I am one of the most naturally optimistic people out there, but I couldn't take the stress anymore. You can't even begin to describe the burnout until you have lived it. 

But then a year ago...

Chelsea's name came up for a Medicaid waiver program after 5 years of waiting. What does that mean? I will tell you!

That meant that we got her on Medicaid because of her disability and most of her medical bills were covered. But also, that meant that we got RESPITE!!! That basically means I could hire someone to come help with Chelsea for up to 40 hours a week, paid for my the government (note: WAY cheaper than placing a child in an institution!). If I needed help with sweeping the floor, they could do that. If I needed someone to read to Chelsea while I cooked dinner, they could help with that. 

It wasn't an immediate cause and effect. It took several months of having daily help for several hours each day for me to phase out of my flight or flight chronic stress mode. We took all the money we saved from having Chelsea's seizure medicine covered ($1,000/ month AFTER insurance), and I had my hernia repaired and got a tummy tuck to fix my abs after three pregnancies. Do I recommend it? 1,000%!!! I feel SO much better about myself!

After about four months, I was able to get off my depression and anxiety medicine. I started losing weight. I suddenly had the motivation to go jogging again. I found the desire to develop my own hobbies again and wrote not one, but three novels, and have two more in the works! 

My marriage flourished. I started enjoying time with my kids again. I started seeing my friends again. And I have never felt better!

So- all those special needs mamas out there, when you are feeling stressed out of your eyeballs, remember that self-care isn't a long, hot bath. It isn't having two dinners brought in by friends. It will mean serious long-term help. Because what we are doing is HARD. And we need major help! Do not EVER feel bad for needing help! I know it can be hard to find those programs. But they are so, so worth it!!! 

And if you know a special needs mama, please consider doing something to help them. We are tired. So very, very tired. 

And finally, I can't say "Get Help" without thinking of this scene: