I also like to think of each day as an adventure. I’m a little like Indiana Jones at times, carefully navigating the booby-trapped catacombs of supporting and loving kids with atypical* needs.
*their needs are typical for them, just not typical compared to most of their peers. I loathe using the word “atypical”, but it’s short and easy to use.
If you read my post yesterday, as well as some of the other eating-related posts, you have figured out that eating is… not easy in this house. Everyone has their own issues. This is mine:
So back to the Speedy’s breakfast drama. Yesterday was the Major Smoothie Catastrophe of 2017. So this morning, I decided to try a method that Speedy’s one-to-one aide uses at school. Lunchtime is hard for him, and the cafeteria is too overwhelming, so she takes him to the OT room and gives him headphones and an iPad. She puts on a series of Laurie Berkner videos from the Lullaby album, and he happily eats his lunch and focuses on the videos.
Could it be that simple?
Well, let me just tell you.
Normally on any given morning, it can take him up to 45 minutes to eat one bagel. We put cream cheese on half, and butter with cinnamon & sugar on the other half. And then it takes regular reminders to chew and then swallow the food. Every day we go through this, and it degrades quickly.
This morning I told him what we’d be doing. He sat down (with one half of a bagel) and I put on the videos in front of him.
In ten minutes, with zero prompting, he’d eaten his bagel and moved on to a yogurt.
I can’t even begin to express what a relief it was to go through the morning with no fights.
In order to maintain Speedy on the medication which does help him focus, we have to hyper-load him with calories and healthy fats. This is not easy with a child who can’t remember to chew or swallow (or doesn’t want to, I’m not sure) certain foods. I will note here that his doctor is working with us to rule out medical issues.
Luckily, I have a pool of incredibly smarty-smart people at work who I can call upon for ideas. And I’m not just calling that because they read my blog. They’re really smart. I highly recommend working closely with behavior specialists.
This morning I tried idea number one: smoothies. If chewing is an issue that causes daily fights (and OHMYWORD does it ever), then smoothies are an option! I took the recipe for a peanut butter and banana smoothie (gag) and added the instant breakfast powder along with some almond milk, ice, and yogurt. Okay, it was nasty. I added some chocolate syrup in an effort to fix it, and hoped that the “Yay, chocolate shakes for breakfast!” sell would be enough.
Not so much.
Admittedly, peanut butter and chocolate was a bad idea. It’s fantastic if you’re talking peanut butter cups, but not so much if you’re talking drinkable breakfast.
Sooooo….. I kind of have a short fuse with this child of mine. I can’t say why him versus all the others, or maybe my oldest two would tell you that I had it with them too.
This morning’s Big Smoothie Experiment rapidly degraded into a fight, when I took it way too personally that he didn’t like it. What is wrong with me? All I have to do is try different ingredients!
I’ve long suspected that I am the boys’ biggest problem, but I also suspect that many parents feel that way. How do I teach them to navigate this world which is only beginning to understand them while at the same time teaching them not to act entitled? How do I teach them ALL THE THINGS OMG?
This is what happens in my brain every. single. day.
Tomorrow we’re going to try something else- Speedy’s older brother had some alternate smoothie recommendations, and thank goodness that his cooler head prevails most mornings. He gave me the opportunity to take a deep breath and recover.
I feel the need to leave you with at least one nugget of wisdom. My takeaway from all of this was that it’s really truly NOT personal when your kids don’t like a food. That tomorrow is a new day, and there are approximately 9,485,220 different foods out there waiting to be tried. All of the world’s problems will NOT be solved by making sure that your child likes each and every one.
My other takeaway is that I really need to just calm the hell down. Maybe I’ll switch to decaf….
Do I win an award for longest and most awkward title? Hehe.
But really, providing all of the information is absolutely important. Let me show you why:
This morning, Speedy and I were having a Battle of the Wills. I have said to him repeatedly “Please set a good example for your brother”. Now, somewhere in the recesses of my mind, I probably knew that this is a vague concept for a child. But I persisted. What’s that quote about doing/saying the same thing over and over again, while expecting a different result? Yeah…
So this morning, when I reached the point where my fuse typically blows, I stopped and backed up. “Sweetheart, when I say to ‘set a good example’, I mean to say that when you do what’s being asked of you, then you are showing your brother how to act”.
A wave of understanding washed over him. I had finally given him the information that he needed in order to respond in a way that would make sense to the situation.
This ties in directly to my last post about what comprises a Social Story™ and how to create and implement them. That’s really all it is- providing context.
We take a lot for granted, and it’s really important to dial it back a bit and explain things in a supportive, positive, and factual way.
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:
Here, I’ll help:
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.
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.”
“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?”
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.”
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.”
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.
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.
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.