Month: October 2017

What makes it a Social Story?

Pull up a chair, lovies.  We need to talk.

The internet is a wondrous place, we know this.  We also know that it houses SO much information, put there by people, and that sometimes people make mistakes.

I went to hear Carol Gray speak last Friday.  Carol Gray, in case you’re not as nerdy as I am, is the creator of Social Stories™.

Yes, I did buy the newest book.

Yes, I did ask her to autograph it.

Yes, I am head-over-heels in love with the concept of them, because frankly this is the way my brain thinks.  I think in Social Stories™, and that’s okay.

Here is what I don’t love.  I don’t love this statistic that she shared with the group:  If you Google “Social Stories” today, you will get 107,000,000 results.  Her website, the only true source of this evidence-based tool, is affiliated with precisely 1 of those results:

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Here, I’ll help:

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The reason I have trouble with this is that there are approximately 106,999,999 things out there that are claiming to be Social Stories™ when they’re not.

Rather than go into the “Why They’re Not” routine, I thought I might talk about things you will find in a social story.

  • You will find supportive and informative language.
  • You will find first- or third-person language.
  • You will find the words “I will try” whenever a coaching sentence occurs.
  • You will find “this is okay” or “that is okay” to help someone understand that something may be a regularly occurring thing, and that it’s okay to be uncertain but that this thing won’t harm them.
  • You will find that this is to provide context around a skill, a place, a person, a concept.
  • You will find that this is NOT to change a behavior.  This is to help someone have all the information they need in order to make a decision or learn a new skill.

Okay, I can’t resist the “you won’t see” items, because HOLY BANANAS there is just so much of it out there!

  • You will not see words like “I will/will not” or “I can/can not”.  The exception to this is that you can use “I can ask for help if I need it” or “I can tell someone if I need time to _____”.
  • You will not see statements such as “It is bad for me to _______” or “Mommy hates it when I _______” or anything with any sort of a negative connotation.
  • You will not see any statement that is not objective.
  • For heaven’s sake, if you see “I will be brave”, it is not a social story.  Just stop it.  I know they mean well, but it’s not to be called a social story.  It’s something different and I don’t have a name for it.

There are other criteria to what constitutes a Social Story™, beyond the language that is used.  There is a process for discovering what your story should be about- what’s the goal?  There is a lot of editing that takes place (just ask my coworkers, they’ll tell you!).  There is a mathematical formula hidden in there too, just for kicks (not really for kicks- it’s important!). There needs to be a plan in place for implementation of the story (i.e. don’t just shove it at someone when they’re in crisis, for the love of all that is and can be).  And there should be a result.  It’s not always positive, because there are humans involved in the entire process and some things may not always work the way we thought.

And that’s okay.

(p.s. go to Carol Gray’s website to learn more).

And here’s one I wrote for myself:

 

My name is Laura, and I am learning how to write Social Stories™.

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Example of a Social Story

Social Stories™ describe a concept or skill and provide context in a way that is respectful and meaningful.

Social Stories™ also help us celebrate something that we do well!

Sometimes it is hard to write a Social Story™. I can always take a break if I am having a hard time. I can start writing again when I am ready. This is okay.

I can also ask for help from my coworkers if I need help.

Social Stories™ help us learn new information so that we know what to do in a new situation!

I am learning how to write Social Stories™.

Talking to your children about their autism

Talking to your children about their autism

I’ve had several people ask me about telling kids about their diagnosis.  I’ll admit, I may not be the right person to ask.  I’m so totally matter-of-fact about things, that in our house it goes something like this:

“So, little dude, you’re autistic.”

“What’s artistic?”

“A-u-t-i-s-t-i-c.  Autistic.  It means that your brain takes in a LOT of information and processes it (like a computer does).  This is true for everyone, but your brain goes about it a little differently.  It also means you might have difficulty with things that are too loud or too bright or involve too many people. And it also means that you may learn a LOT about one particular subject and then teach us all about it.  Cool, eh?”

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It’s safe to say he has my sense of humor

The other day, Speedy was reading the back of my wine glass that we received from David’s Refuge during a respite weekend.  “Children with special needs aren’t sent to special parents, they make parents special.” He looked quizzically at me.  “Do you know what it means when they say ‘children with special needs’?” He shakes his head no.  Then he stops and smiles.  “Is it because of my autism?” “Bingo, kid.  You got that right.”_MG_7929

So here’s my thought on, well, pretty much everything.  Kids pick up EVERYTHING.  They hear and see all of it, especially when we think they can’t or don’t.  When kids hear the adults in their life talking about their strengths and their abilities, and talking matter-of-factly about the benefits of being autistic, they have a more positive view of themselves than the kids who grow up hearing only about the deficits, the struggle, the “I wish he was never born this way” moments.  Don’t get me wrong- we do have the struggles.  We do have the nights when I dissolve into a weepy puddle in my husband’s arms- or vice versa- because we just had never signed on for how much work this would be.  We do have to have deficit-based conversations at times (when our children are not in the building) because some access to services requires that conversation take place.  I end most of our family dinners with my head in my hands.

I don’t want our readers to think I’m all sunshine and roses.  No, lovies.  I’m coffee and wine.  I’m fried cheese and beer.  I’m hanging on to the edge of a cliff by my chewed fingernails.  I move through emotions so fast it would make your head spin, a fact which has often confused my acquaintances.  But it’s all Coping Strategy 101.  There is no manual for my children, which is why I write- so that you may have something to go by.  A weird combination of Instructional Manual, Coffee Table Book, Bathroom Reader and Comic Strip.

I recently attended a conference where the presenter said “If you’re considering writing a book, don’t.”

I’m not letting that dissuade me.

Accessing state services and planning for the future

Accessing state services and planning for the future

When I started writing this blog, Wonder Boy had long since been approved for services through our state’s Office for People with Developmental Disabilities (OPWDD). When we first applied for them, he was maybe 4 years old, and we really didn’t know anything about what services we’d get/want/need and we definitely didn’t fully understand the process.

The first thing to know is that at least in our state (and I suspect in all states), some of the supports from the state are funded by Family Support Services (FSS).  In our case there are certain programs such as respite reimbursement which are funded through state FSS funding.  These programs are accessible once you’ve been approved by OPWDD. Then there are “Medicaid Waiver” services such as community hab and day hab- these are funded by Medicaid money, and the “waiver” means that they waive the parents’ income when processing the Medicaid application.  Mind you, you still have to fill out the application (I recommend having help for all of these steps, by the way), and then you have to wait, even though a person’s disability should theoretically be enough to have it approved right away.  Wonder Boy’s Medicaid application sat on a desk for four months.

Getting approved for FSS or Waiver services is another matter- in the case of Wonder Boy, it meant that all the reports from the doctors and his school and his Early Intervention (EI) team all had to be submitted.  Then, because of his young age, we had to drive an hour away to meet someone who would determine once and for all if he should get these services.  Then once they decided to give him provisional eligibility, we had to go through the process of selecting a Medicaid Service Coordinator (MSC).  This person helps families put together the supports they will need over the years.  Because of how closely this person will work with a family, it’s important that this be a positive working relationship.  You can always switch to a different MSC if the relationship is not working out.

A lot of these little details were lost in the recesses of my mind, because our lives are so incredibly chaotic.  So we fast-forward to present day, as we go through the process all over again with Speedy.  This time things are moving a little faster- in part because I know what to expect, but also because he’s an older child and therefore we have more data from the school to show them.  Between school data, medical records, and the Adaptive Assessment that we were required to complete, we had everything they needed.  The Adaptive Assessment is a test filled out by us and by his teacher, and then scored by the school psychologist.  It shows his strengths and deficits in basically all areas of his life.

 

Yesterday, I received the phone call that he was deemed eligible.  Now we move to the stage of determining what services he needs.  Then that request will need to be approved by a committee.  THEN we will need to select an MSC, and THEN we can apply for Medicaid Waiver services.  IMG_4948

The hurdles are many, and the process can really be challenging.  Yesterday I was finally able to breathe for the first time in months.  And then we’ll get over the next set of hurdles, and the next, and the next…..

It’s about setting them up for what they’ll need for the rest of their lives.  And it’s hard.  Believe me, I know.  And it’s really really worth it.

Sensory-friendly performances: The good, the bad, the happy medium

Sensory-friendly performances: The good, the bad, the happy medium

I’m about to say something that might seem to go against the grain, but I’m going to say it anyway.

Sensory-friendly performances aren’t inclusive.

There.  Feel better?  Me too.

Here’s why I feel this way.

When a play or a movie or, well, really anything goes about its normal business, things are likely to be loud, bright, overwhelming, and busy.  We can certainly acknowledge that this can feel downright volatile to anyone with “different” sensory needs.

I feel like organizations are SO hellbent to provide “autism friendly” or “sensory friendly” experiences that they forget one vital fact: This doesn’t provide inclusion, it provides a way for those with sensory needs to experience the thing separate from everyone else.  And that, my lovelies, is exclusion.

I’m gonna tiptoe out on a limb here, but what if – gasp – every performance or every day was sensory friendly?  Who would that harm?

What if places with sensory rooms at certain times (only during specific events) had those spaces (like a room to calm and regroup) ALL the time?  And why have they not done that yet?

Look, I want my kids to go to this thing or that thing just as much as anyone else.  And when we see a “sensory friendly” showing of something I do smile.  At first.  And then I realize that my kids won’t experience the thing along with their neurotypical peers.  They will get to share it with other kids like them, but they would get to do that organically if sensory friendly was just a THING that we could find any day of the week.

So why can’t we?

People/companies seem to think it’s out of reach.  Or maybe they think that one performance out of 20 that is done as sensory friendly is sufficient.

I can tell you right now, it’s not.

The beginning of the most important journey of our lives…a.k.a. Chapter 1.

When we had our first son together seven and half years ago, life was relatively simple.  I had been married before, as had my fiancee (now my husband).  I had ended my previous marriage and we shared custody of my two sons from my first marriage.

So there we were, with a new baby and two pre-teens.  Wait.  Did I say it was simple?  Okay, it wasn’t at the time, but when I look at how life is now and look back to that time, we had it kind of easy.  We were making very little money but by gum, we had LOVE on our side, right?

Starry-eyed and raising this brand new life, we were totally unprepared for what would come a few years later, when our second son was almost one year old.

Can anything really prepare you for that moment when you realize that things may not be progressing typically with your child? I remember moments when he was about 8 months old when I’d be holding him and rocking him to sleep.  I’d remember the scene in Mr. Holland’s Opus when his wife realizes that their son is deaf. And on some level, I knew.  I didn’t know what I knew, but I knew.

A few months later, my husband voiced his concerns to me. “He doesn’t look at us when we say his name or when we speak at all.  I think something’s wrong.” He was right- our very smiley, happy child was no longer looking at us.  Most kids at 11 months old are at least looking up when a parent says something, but he did not.  He was happy, but distant. At first we thought it was his hearing, and we talked with his pediatrician.

She referred us to the Ear, Nose, and Throat doc in town, and suggested that we call Early Intervention so that they could come and assess his development.  He was missing out on some of the standard developmental milestones.  By the time he was a year and a half, he would get tubes in his ears to hopefully bring an end to the many ear infections he had as an infant. At the same time, he was receiving speech therapy and “special instruction” to help him learn how to play with toys in an appropriate manner (don’t get me started on that, I have a whole separate post on “appropriate” play).  He was seen by social workers and specialists galore.  He had one hearing test after another, all inconclusive.  A month after the tubes were put in his ears, he had what’s called a “sedated ABR”, or auditory brainstem response study.  This is a test which measures the brain’s response to sounds, and the patient is sedated.  This was our first conclusive test- he had perfect hearing.

Finally, we had a better idea of the direction to head. This was not medical at all, but developmental. His pediatrician referred us to a developmental pediatrician at a hospital two hours away.  They had a long intake process and were booking quite a ways out.  Four months later, almost exactly one month before his 2nd birthday, we were given his official diagnosis of Autism Spectrum Disorder, a Global Developmental Delay (he was delayed by about 18 months), and a Sensory Processing Disorder.

Luckily for us, we’re a rather “clinical” household, as I describe us to physicians.  That is my way of saying “don’t tiptoe around it, just say what it is”.  We’d already done a lot of research by diagnosis day, so this was no shock to us.

By the time he was three, he was aging out of Early Intervention services, and we found him the most perfect integrated preschool.  He was the smallest and youngest in his class, a tiny little non-verbal boy with a pacifier in his mouth and two small plastic animals in his hands everywhere he went. He communicated by pointing at things, and using the few ASL signs that we’d learned as a family.

He developed an incredible bond with his teacher and his aides, people that I am so grateful to continue working with.  About midway through his second full year at the preschool, he began to speak.  I finally heard his voice, and I sobbed.  From there, he continued to flourish, and now he can speak at length about his favorite subjects.

When he finished his second full year (including summers) at the preschool, we braced for him to move into the school district, in a gen ed classroom with a fabulous teacher and a 1:1 aide.  Now he’s in 1st grade, reading well and writing well.  He’s still got needs, and we’re meeting every one as they come up.

All along our path, things have just kind of…aligned in our favor.  I can’t say why, but I do know that no two families travel this path in the same way.  We bring to it our own personal experiences, knowledge, heart and soul.  And no two days are the same, either.  Some mornings I cry on the drive to work.  And then I dive headlong into helping other families so that I can feel some sense of purpose.  Other days are more easy to manage, and on those days I realize how lucky we are to have kids who have taught us so much more than we ever thought possible.

On to chapter 2…

Navigating food issues

I may have mentioned this a time or two, but the boys really struggle with food.  For Wonder Boy, it’s a combination of being 5 and preferring to eat nothing but chicken nuggets and string cheese (he does eat a few more things) every meal for the end of time and also having sensory needs which are not met by many standard “kid” foods.  For example, anything soft or creamy is totally out of the question, with the possible exception of ice cream.  He won’t eat regular yogurt (soft, creamy, and full of stuff that he doesn’t trust), mac & cheese (though he will eat pasta with parmesan cheese), hot dogs, the list goes on.

For Speedy, it’s a combination of medication which prevents him from being super hungry and a major anxiety about…everything.  That anxiety at mealtime is typically connected to wanting to please his parents, aide, and teacher and being terrified that he’ll fail.  No child of 7 should have to feel that level of anxiety, but it is with him 100% of the time.  Because of his meds, he really can’t eat a lot at any one time, and because he may leave food on his plate, in his mind this is letting us down.  This all manifests as stomach cramps, and the cycle just continues to get worse.

As a result of these things, we’ve come up with some alternatives.  For Wonder Boy, we focus on just getting protein in him and the key vitamins and nutrients.  As long as he’s had a peanut butter sandwich (no jelly, please) or chicken nuggets we’re happy with the protein, and in a pinch he can have a meal replacement shake.  For Speedy, we feed him many tiny meals throughout the day, and his aide at school has been an integral part of making this work.  At dinner, we allow him to stay focused on something like music or an educational program on television, and then he’s more likely to actually eat without anxiety.

Recently, we signed them up for a program at one of the universities which allows Occupational Therapy students to work directly with kids.  They play and provide the kids all sorts of input, allow them to crash, swing, roll, and spin.  Then all of the kids go into the kitchen, where they work with the students on having fun with food.  The students provide the kids with an example of something fun they’ll make with food, usually a design or an animal.  Then they give the kids the food items needed and see if they can recreate the design.

Along the way, they ask the kids if they will smell the food, then “kiss” the food, then move up to touching the food against their teeth.  Wonder Boy got as far as the kiss yesterday with one of his least favorite foods, celery.  This was huge for him!  Last week they made animals with apple slices, raisins, string cheese, and sugar snap peas.  He now will eat sugar snaps as long as I make him a “mantis” out of his food.

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Admittedly, this mantis is missing four legs…but you get the idea.

I know that eventually mealtime should get easier.  Having raised up two other boys, I’ve watched them move through various food phases and ultimately become people who really enjoy a wide variety of items.  In the meantime, we navigate each food encounter with the precision of a highly-skilled CIA operative.  At times sneaking in the stuff they need, and negotiating as though our lives depended on it.

How to raise self-advocates

I think it’s safe to say that I’ve always advocated for what I want and need, when I know what that is.  My parents did a bang-up job, whether they knew it, of teaching me to ask for what I want and need.

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Look at that face.  I was definitely up to no good.

In high school, I figured out very quickly how to get close to teachers and get things such as slightly better grades (offering to do all the photocopying goes a long way) and even a cup of coffee from the teachers’ lounge during my junior year.  Hey- I never said I used my powers for good!

Honestly, I’m not really sure what my parents did to create this person that I am.  I seldom make much sense to myself.  On the outside, I may appear social and easy going, and there are times when I truly feel that way.  But the inside may feel totally different.  And then other days, I feel giddy and child-like, but must maintain a professional exterior:

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Photo by Dave Burbank Photography

I think I’ve come a long way in the last few years.  I remember a conversation that I had with a friend and some of her friends (I really didn’t know them well, and it’s possible that I did not make the best impression).  We were talking about what to do when our kids need services at school but the school isn’t on board.  I stared in amazement at the people around me who were all saying they didn’t think they could insist on what their kids needed.  Um…what’s that now? As I listened to them say these things, I saw something very interesting happen with their body language.  They physically became smaller.  Their bodies, their voices, everything about them shrank.

My reaction was to get bigger, louder, more powerful.  “These are your children.  If you don’t advocate for them, who will?”

Blank stares.

“No but really!  Your job here is to go to the school district and demand for the services that your child needs to succeed!”

I may have lost them at that point, which is why I say I’ve come a long way in the last few years.  In part because I’ve been working directly with families and want to be professional because I love what I do!  And in part because I’ve learned more about who I am through raising the boys. I’ve learned how better to connect with people to help them figure out what they need, because I’m simultaneously doing that at home.

I think I was trying to write about how to teach our kids to be self-advocates, and it may seem that I’ve wandered away from that path.  I believe that it’s a two-step process.

  1. We must learn to advocate for our needs as well as those of our children.  We should learn to recognize what is truly needed and not be afraid to ask for it.
  2. Through that, and through teaching our children that we respect that their bodies and their needs are truly theirs, we will have done what we are here to do.

My husband and I watch the show Speechless, a sitcom about a family who works together (and sometimes work in spite of one another) to get what they need.  One of the kids in the show (J.J.) has cerebral palsy, and the mum (Maya) is a staunch advocate who fights for (and usually gets) what J.J. needs.  We love this show because it does not steer away from using humor as well as talking about some really serious issues faced by those with disabilities.

In the most recent episode, Maya helps a group of other parents by teaching them to demand what they need.  For the first time in a long time, she feels that she’s really doing something incredible by helping these parents find their voice.   It goes sideways when the district realizes that her son is getting way more services than they’d ever provide…(watch the video clip below)

Maya and the District

SPOILER: In the end, she works with the principal to find cost-saving solutions to meet everyone’s needs.

Just for fun, because he’s awesome, here is a video of Zach Anner sharing his views on the show:


On a side note, did you know that Micah Fowler, who plays J.J. DiMeo on the show, actually has cerebral palsy?  In a bold move, Hollywood actually cast an actor into the part he was born to play.  It doesn’t happen often, and it’s reason number 1 why this gal doesn’t watch shows about autism (because despite the fact that 1% of the world’s population is autistic, Hollywood can’t seem to turn up an autistic actor).

So.  To sum up:  Ask for what you want, even if you think you won’t get it.  Teach your kids that their bodies and their thoughts and feelings belong to them.  You won’t be sorry at the result.  I promise.