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:

Speech with SATB2 Kids

 

Many of the most common questions for newly diagnosed SATB2 families center around speech- the prognosis, the recommended treatment plan, and what to ask for in IEPs.

In a nutshell:  

Prognosis

98-100% of children with SATB2 Associated Syndrome also have Childhood Apraxia of Speech. This will range in severity, but is usually severe to profound. All this means is that your child needs a LOT more repetitions of a sound/ word for them to learn it. 

With appropriate, intense, and frequent speech therapy with a qualified professional, progress can be made. There are children with SATB2 who primarily speak and are understood. There are also children who vocalize but are not well understood by strangers, so supplement with AAC devices and/ or sign language. 

Recommended Treatment Plan

The recommended treatment for speech is:

- A minimum of 90 to 120 minutes each week of primary 1:1 speech therapy

- Speech therapist should be highly trained in area of Childhood Apraxia of Speech

- Supplementing with AAC device/ sign language/ PECS system

The full recommendation letter for speech can be found HERE 

The full list of recommendations for all areas (genetic, dental, neurologic, musculoskeletal, etc) affected by SAS can be found HERE

And of course, there are more resources to be found at satb2gene.org

Getting More on Your IEP

Now, we get to talk about my favorite topic- IEPs!!! 

To briefly recap for new families- an IEP (in the United States of America) means the Individualized Education Program that the school team helps to design to fit your child's specific needs. 

This is usually a rather lengthy document that outlines:

1) Your child's current ability levels across all areas (PLAAFP)

2) Goals in different subjects/ areas (this could mean science, gross motor, reading, speech, or toilet training or whatever is most important for YOUR child to learn)

3) Accommodations/ Modifications

4) Lists of services and the number of minutes

I won't go into goals/ accommodations/ modifications/ PLAAFP right now. We will save those fun topics for another day. Today, we will scratch the surface on related services and the number of minutes! 

Here is what is SUPPOSED to happen:

a. The parent expressed concern about their child's development, often provides letters of recommendation from professionals familiar with the child 

b. The school team assesses/ evaluates the child and pays special attention to the parent's concerns, and studies outside information

c. The parents and school employees develop a plan to get their child the appropriate number of minutes of services that the child needs based on their disability

d. The IEP is implemented correctly

Here is what USUALLY happens:

a. School gets referral for a child, does standard evaluation

b. IEP is developed before parents meets with school. This is typically a "one size fits all" IEP, like:

    - Half day preschool 3-5 days a week

    - 30 minutes group speech therapy/ week

    - 15 minutes fine motor development/ OT each week

    - 20 minutes APE (Adapted Physical Education) class each week

c. Parent is unaware they can (and should!) ask for more, assumes the school knows best, and signs the IEP. Also they feel a little intimidated by the army of professionals sitting across from them

d. IEP is implemented (sometimes correctly, sometimes not)

SO... What should we do???

In regards to speech for my daughter, I ask for:

- 2 hours 1:1 speech/ week 

- Regular training for myself and the SLPs (3 apraxia specific webinars/ year is my go-to)

- AAC training for all staff that work with my child (bus driver, aides, teachers, everyone)

- 1 30 minute group speech session/ week to practice functionally using language among peers

Many parents get to this point and think "Yes! I want my kid not get more, but how do I get the school to agree?"

Here are 3 ideas to try:

1) Bring letters from professionals! Bring in letters, like the ones from the links above, that back up what you are asking for. Bring in mounds of research (highlight the parts you want them to focus on!) and submit it as peer-edited research. Apraxia-Kids has a great website with a lot of research, and of course satb2gene.org. 

By federal law, the IEP team HAS to consider any professional data you bring to the table. You can also write up a parent addendum and have them attach it to your child's IEP. In my parent addendums, I will write out what specifically I am asking for and what the school's response is. As a parent addendum, it is automatically a part of your child's record, and can be seen as evidence that you are trying to get what is scientifically proven to help your child progress. 

That way, if you submit a complaint to your board of education, they have hard evidence that you had professionals recommend a certain treatment/ level of treatment that the IEP team ignored. 

2) Be flexible with the SLP. Many SLPs worry about your child missing instructional time, and so don't want to pull them for speech. This is an understandable concern- we don't want them to miss out either! So think outside the box. Could the SLP go with your child to science? Could they have their speech session outside during recess one day and work on asking other kids to play? Could you meet before or after school to get those minutes in?

3) Remember the case law Endrew F vs. Douglas County! This was a 2017 case that determined that children with disabilities should be making "meaningful, not minimal" progress. So if your child is receiving 30 minutes of group speech therapy each week and not making progress (or not making significant progress!), then it clearly is not working and needs to be changed. The definition of insanity (according to Einstein) is doing the same thing over and over yet expecting different results. 

This case law is a HUGE win for students with disabilities! No longer are we supposed to accept tiny bits of progress, but we can expect more of the schools! 

You can read all about Endrew F v. Douglas in my favorite article about it HERE. Also, if you haven't spent an insane number of hours reading the blogs on wrightslaw.com, run over and take a look! They blog about every topic known to special education families! 

Intelligence Does NOT Equal Worth

Guest Post By Leslie Alder

The way we talk about people who are disabled matters. I recently heard to a person talking about their disabled sister-in-law. She is 70 years old and has the mentality and functionality of a five-year-old. 

This person said, "She's definitely handicapped, but she is SO smart. She is NOT dumb." They then proceeded to recount all the stories to prove that. Like how when they drive back to her hometown, she knows exactly where to turn to get back to her childhood house. And she knows all the months of the year, and all the holidays in order.

Listening to this person, it seemed like they were so desperate to prove to the world that their family member was worth existing, and worth respecting despite her disability BECAUSE OF her intelligence; that her intelligence had redeemed some of her lost worth.

Why do we think that intelligence equals worth? 

What about my cousin who suffered a traumatic brain injury when she was 1 year old that put her back at a newborn state? She remained in that same state 11 of the 12 years of her life. She was developmentally a 3 month old. She was not "smart." She was disabled in every possible way. But you wouldn't say, "Yes, she is disabled *sigh* AND she's dumb..."

No one would argue that a newborn is less valuable because he doesn't show signs of intelligence. They contribute literally nothing to society. In fact, they drain a lot of resources and demand a lot of time from their caregivers without producing anything tangible in return. But we love and cherish them and absolutely recognize their worth. 

It frustrates me that we have this value system of 'You are more valuable if you're smart' and 'You are more valuable if you are successful' and 'You are more valuable if you can produce things'.

If your contribution to the world can be measure in a tangible way, then you are valuable, and we like you. But if your contribution to the world cannot be measure in a tangible way, then we question your worth.

It is a human brain thing.

Our brains have evolved over thousands of years to keep us safe, warm, and fed. Those things are most easily achieved when we are in a tribe with other people. So everything we do is passed through the filter of "Will this help me stay in the tribe or will this get me kicked out?" 

We try to figure out where we are on these scales and we construct to make sure that we're not going to be voted off the island. The scales of Wealth, Intelligence, Beauty, Strength to name a few. 

So as long as we can find people that are beneath us on these scare, we feel a little bit safer in our tribe.

But I think it is also heightened by our specific Western culture because we value the American dream. Producing and making something out of your life, and raising yourself above where you came from and contributing to society in a way that makes money. Therefore, if your contributions cannot be assigned a monetary values, you are "less than". 

This is unfortunate, because it limits us from really seeing people with disabilities for who they are. We decide ahead of time that their contribution are less valuable than those of the typically developed person. We miss out on the fact that there are a lot of ways to contribute to society that cannot be reflected monetarily. 

The love and sacrifice and the total Christ-like compassion and empathy that my cousin brought to her family cannot be measured monetarily. 

Her contribution to the world during the 12 years she was here was more significant than mine in a lot of ways. 

As her mother said, "We love our little ones not because they might become someone great someday, but because they already are fantastically amazing!"

I am all for learning and developing and progressing as much as we are each capable. I believe it is in our nature to create and learn and connect with each other. We are happiest and feel most fulfilled when we are living and working up to our potential. 

But we work for those things because it will make us happy. Not because it will improve our worth. We came here with our worth intact. We don't need to earn it or prove it to anyone. 

So I wish we could just flip a switch and delete this whole idea that you have to prove someone's intelligence in order to give them value. 

Because INTELLIGENCE DOESN'T EQUAL VALUE.

A parable is told in the New Testament about a master who is leaving to travel. Before leaving, he entrusted each of his servants with his property while he would be away. According to the abilities of each man, one servant received five talents, the second had received two, and the third received only one. 

When the master returned, he found his first two servants had doubled their money while the third had only hidden his and had no increase. 

We tend to focus on that third servant- how his lack of doing was a sin and we caution against being a slothful servant. 

But what is more interesting to me is what happens to those first two servants. The first is given 5 talents, and the second is given 2. That alone speaks volumes about how some of us come to this earth. We don't all get the same talents, the same experience, the same resources, or the same abilities. 

But they received the same exact reward because of what they did with what they had. Even thought the second servants best efforts (4 talents) didn't even measure up to where the first servant started (5 talents), they both received the same inheritance. This teaches me that we cannot use others to determine our standing in society or contribution. There is no scale. 

We don't improve ourselves in hopes of being better than a certain number of people. We just try to be better than how we came.