Meet The New Boss, Same as The Old Boss

So, turns out I was actually serious about getting this going again. :D

And whether you’re new here or just want to get caught up, you’ll need to know a bit about Josh, or, He For Whom the Planet is Named. Otherwise referred to as Toad or Toadie.

For anyone looking for extra credit or if you’ve run out of good stuff to watch on Netflix, reading the Archives from when I started this business back in 2010 will provide you with the best background. But for those without that much time on their hands, in a nutshell (full disclosure: it’s a pretty big nut):

My name is Sarah and I started writing this blog for those interested in what life is like raising an autistic child. Not as an example for everyone (yeah, no, do not look to me as any kind of example) more as a peek at the realities of day-to-day life that might inspire some understanding and compassion with as much humor as possible. This is our reality, this is not everyone’s reality. All people with autism are different, all families are different, and all circumstances.

Josh, the younger of my two sons is severely affected by autism and developmentally delayed. And when I say “severely,” I mean at almost 21 years of age he cannot care for himself, communicate more than very basic needs, and deals with a significant amount of anxiety and mood dysregulation which manifests through various behaviors—some of which are harmful to himself as well as others. He is on a number of medications, needs almost constant supervision, has a very limited/unusual diet, and is obsessed with certain things.

Toad’s story is a bit atypical, in that he had motor/developmental issues that were apparent when he was still a baby. He wasn’t rolling over when he should have, and when he finally did, he would only roll one direction; he was a late walker and late talker—and only had a couple of truly discernible words; he growled like a baby tiger; bear-walked instead of crawled … it was initially thought that he’d had a stroke in utero.

He had a full evaluation with a neurodevelopmental specialist which included a brain MRI, loads of tests and blood work including genetics and a skin biopsy (for a mitochondrial defect). At this point he was 17 months old, and fairly typically social.

His MRI did not show a stroke, or the remnants of one. None of the other tests showed anything out of the ordinary either.

Two months later the “socialness” disappeared. He stopped interacting with others, started screaming when anyone other than me even looked at him, lost all interest in his brother—who, up until that point, he had always wanted to be around—and began “flapping” his hands and jumping when he was looking at certain books. He started carrying toys around—always had one in his hand—or just throwing them over his shoulder instead of playing with them. His couple of words went away and, he stopped waving “bye-bye.”

I had been a nurse/nurse practitioner and his dad was a pediatrician, and we both knew what were seeing at that point. He started early intervention, which due to his age involved various physical/occupational/speech therapists coming to our house, and ultimately, at the age of three, he was officially diagnosed with autism.

I should probably note that this was the late 90s - early 00s.

Otherwise known as the last time Train was any good and we still had VCRs and VHS tapes.

And this, was little Toadie:

One of my all-time favorite pics of him :)

One of my all-time favorite pics of him :)

This would be a good time to hit the Archives. Here, I’ll even throw you a page to get you started .

Really, the more things change, the more they stay the same. Which is something that hasn’t always made sense to me, but, it actually works as far as current Toad vs 2010 Toad goes.

  • There is no more french fries counter. This is not because Toad stopped eating or asking for them, he does still, but because he perseverates on a number of different things these days, not just fries. We make a weekly trip to a local drive-thru for them, and the folks there know us so well they start his order as soon as they see my car coming.

  • His footwear of choice went from Uggs to Crocs. Because of course it did.

  • He’s still all about Blue’s Clues. It’s all on the iPad these days, and, in weird ways on YouTube. We’ll talk about that later.

  • He is mostly independent with toileting now—he was 18 when it finally happened. I honestly didn’t think it ever would. Still needs help with cleaning up, but, this is a huge, huge leap away from changing diapers.

  • Aside from nursery rhymes, his musical tastes these days lean toward classic 90s R&B/Hip Hop. And the Home Depot “Search for a Star” music video winners. We’ll also talk about this later.

  • Still likes all the same toys. Weird cat piano thing? Yep. Peek-a-blocks? Yep. Chuck and Friends soft trucks and cars? Uh-huh. Any Blue’s Clues book or toy? YAS. Most of the things he likes can only be obtained via eBay or Amazon Marketplace sellers now. Which, thank goodness, but also $$$$$$.

  • He doesn’t try to disrobe in public any more, but still does at home on occasion.

  • Still loves to swing.

As I mentioned, he is nearly of drinking and gambling age now, and just finished with school.

And he still loves water/walking on the beach.

And he still loves water/walking on the beach.

One of the biggest reasons I stopped writing the blog when I did was that I got a job writing for a newspaper. Which is what I have been doing for the past six years while he was still in school. But care for Toad is expensive, and the bottom line is we can’t afford for me to keep working outside the home now that he’s out of school for infinity. At the moment we live on an island, which while very close to a major urban area, doesn’t have enough of a population to support day programs for adults like Toadie, so, I quit my job and am back to supporting life on Planet Josh full time.

Transitions for all of us, hooray! Join me while we work through it all, won’t you?

Did I mention the Elder Spawn is graduating from his post-secondary endeavor in a week?

Anyone? Credit: SNL GIPHY

Anyone? Credit: SNL GIPHY

Postscript to the Birthday Post

There are a couple of things I'd like to touch more on from the last post.

First, it occurred to me when I read it over, that my frame of reference for what was assumed about autism or autistic individuals is likely very different from most of yours, unless you are close to my age or older.  Autism wasn't something people knew much about when I was growing up.  In fact, you'd rarely hear of it at all.  I only knew about it before I was in my teens because a cousin of my mom's had a son who was institutionalized because he was autistic.  I never met him, so I really don't know what he was like.  I only heard my mom and her relatives talk about him sometimes.  All I knew was that because he was autistic, it was impossible for his mother to take care of him so she'd had him placed somewhere.  As a kid, all I could imagine was that he was crazy and probably violent.  This was my first notion of what autism was, whether it was correct or not.  Keep in mind, we're talking about the 1970's here.

My next ideas of it came from a tv show.  St Elsewhere was a medical drama that aired on NBC from the Fall of 1982 to the Spring of 1988.  It was a fantastic show, and on it, the son of one of the main characters was autistic.  Tommy Westphall.  His character was completely replete of emotion, there was nothing about him that ever suggested he felt connected to anyone at all.  He just stayed in "his own world", barely interacting with his family and even when he did, it was always very robotic.  Stereotypical to be sure, though based on what was known at the time, I imagine.  This is the picture of autism I had.  It was the only picture.  Until 1988 when Rainman came out. 

There is a tremendous push in the autism community to distance themselves from that movie.  I don't have quite such strong feelings about it, and I'll get to that in a bit. But among most, there is.  It was probably the first time many people had any idea about autism or what it was like - the movie was so popular, that Dustin Hoffman's character WAS autism to just about everybody who had seen it.  Once again though, we were looking at a person who had been institutionalized for most of his life, who didn't like being touched or hugged. 

The Rainman character was actually based on 2 people. Much like the Tommy character before, this presented a very limited view of the disorder but it was really all we had. So this was my reference, this limited knowledge based solely on what I'd been presented with in the media.  Entertainment media at that.  Sadly, I learned nothing about it in the course of my nursing studies.

While the traits and characteristics of these characters can all be found in people with autism, what was not made clear was how much the disorder varies from person to person.  I don't believe it's possible to find two individuals on the spectrum who are exactly alike in how they are affected and/or how they behave.  I can say that now, after all my years of looking after Josh and having met many other autistic children along the way.  But I didn't know it back then.

In a way, I think Josh is a lesson the universe needed to teach me.  I didn't mention this in the "guilt" post because it's hard for me to admit, but I had a conversation once with my best friend in nursing school.  I remember it very well even though it took place a long, long time ago.  We were in our final year of school and were making decisions about the specialties we thought we'd be going in to once we started working.  The conversation eventually came around to pediatrics and sick kids and how hard it would be to take care of them and we somehow got off on a discussion of different childhood ailments.  I don't remember specifically what else was said, but I do remember saying this: "I think that having a child who was autistic would be the worst thing I could imagine. Can you imagine having a child that never shows any affection or love, that doesn't interact with you, that doesn't want you to interact with them? It would be worse than anything else that could go wrong. "  Deep breath.  Yes, I really said that.  And trust me, it haunts me to this day.  Understand though, I was basing that on what I have shown to be very limited knowledge.  At least these days, there is so much more information available and so much more given to us in the media, there is a much better frame of reference for people. 

But I have Josh. And Josh has taught me a great deal about many things.  He has shown me that he can love, that he wants and needs to interact despite the fact that it is very difficult.  He has expressions and uses them often.  He is not a savant.  But he is not a robot either.

I don't shun the Rainman comparisons as much as some for 2 reasons. First, Josh has many behaviors that are actually very similar to Dustin Hoffman's character.  So while I know that people shouldn't hold that up as the definition of autism, there are certainly enough similarities to make it a reasonable reference.  Second, it was a positive portrayal.  And it was a monster hit.  While it may have been entirely unrealistic, it also brought autism out to many who probably would never have thought about it otherwise.  I won't fault them for that. 

So when I talk about how different Josh is because he is so affectionate and loving, you now know why I see it as, in fact, "different" for a person with autism.

 

OK.  Now, on to something entirely different but still related to the birthday post.

Have you ever wondered, with a child that cannot communicate, how you buy gifts for them???  It's not like big brother, whom I can simply ask, "hey, what do you want for your birthday?" and he'll give me some ideas.  I used to rely on the "if it has anything to do with Blue's Clues, we're good" rule.  But with the series long out of production, there are no more toys/products.  I rely on fresh batteries and the hope that Amazon carries the books forever.  But we need to do something and Josh does like other things.  It's just figuring out what that's the hard part.

So a few years ago, I just decided that it was best to let him show me.  I'd take him to a toy store or department and simply watch what he seemed attracted to. I would get the things he seemed to like in the store but I wouldn't bring them in from the car after we'd get home.  I'd wrap them up later and voila!  He had his presents.  Josh doesn't care that he's seen them before, in fact, he's pretty happy about it since he'd wanted them in the first place.  At this point I just let him go and tell him to find what he wants and when he picks things up, I have him put them in the cart.  This has worked really well - he's always happy and we know he's getting things he's interested in playing with.  Which is much better than trying to guess like I used to.

Which just made me think of yet another post I can write...!

Postscript to the postscript coming soon :)

Dear Zach: A Letter to my Big Brother

As much as it is a challenge being the parent of an autistic child, siblings can have their own difficulties.  Zach is only 22 months older than Josh, so he doesn't remember how much Josh adored him before all of his issues were fully manifested.  In some ways I think that's good, because I know how terribly it broke my heart to see him disconnect from his big brother and I'm sure it would be just as hard for Zach to remember that.  But I also think it would be helpful for him, when things get tough with Josh, so he would know how much his brother loves him.  Zach has dealt with a lot over the years, having Josh as a brother, and I think Josh would like Zach to know some things:

Dear Zach,

Mom says that even though you were only 2 when I was born, you were the best big brother right from the start.  I know when I got a bit older I loved being with you.  That's why mom would always take me to the play room or sit me next to you if you were watching something on tv, it really made me happy.  There are a lot of pictures of us together when I was little like that, you should ask mom to show you sometime, I think you'd like them.  I remember you were right there with me when I first learned how to walk and you were so excited for me!  We used to play chase - well, as best we could in the house and with me not walking so well, but I would always follow you and you used to try to hide from me then surprise me when I would get close.  I liked this game. 

I don't know what happened that made things change for me.  But I want you to know that even though the problem I have makes it so that I don't talk to you or play with you any more, it doesn't mean that I don't love you.  I do!  I love mom and dad too.  I just can't make things work properly so that I can understand and communicate - but I do have feelings.  I just don't really know what to do with them.  Whatever is wrong makes things really hard for me.  So when I feel sad or angry or frustrated I don't know how to handle it and sometimes it's scary, so I act-out.  I know that this will get someone's attention and maybe they can help me.  When I hurt you, I know it makes you sad, and really angry at me.  I can understand that because being sad and angry is usually why I'm acting out.  So I know it's not fun.  And I am really sorry when I do end up hurting you, I'm not really trying to do that, though I know it doesn't seem like it.  You never, ever hurt me back - it would be understandable if you did - because even though you might be really, really mad at me, I know you love me and you know I can't help a lot of the things I do.

I know it has been hard for you, over the years, having me as a brother.  In many ways I'm sure it's like being an only child but without the benefits.  There are a lot of rules for you that don't apply to me and I'll bet that seems seriously unfair.  I know there have been a few times when you've said that I was "lucky".  I know it's because of that.  You don't want to be me though, Zach.  Even though it might seem nicer to not have all the rules, it's not fun, not being able to communicate with people or understand most of what goes on around you or even inside your own head.

I know it's embarrassing sometimes, especially when I'm being really loud out in public or at places like swimming or karate class.  And I am really sorry that there have been times we have had to leave wherever we were because I was having a hard time, I know that's not fair to you or mom and dad.  But I can't help it. I wish I could.  You have always been good about it though.  You're a great brother.

There are a lot of compromises and accommodations that have to be made for me all the time.  Many times this is at your expense somehow, whether mom can't attend a special school program because it wouldn't be appropriate to bring me or she doesn't get to go on a field trip with you or you have to stay after school to do Homework Club next year because mom has to come and pick me up first... I know it's a drag.  I wouldn't blame you if you didn't like me very much.  But I know that you love me.  You show me all the time.  You try to help when I'm upset, you tickle me and make me laugh, you kiss me goodnight when I'm falling asleep, and you always make time for me when I do want to talk to you.  That helps me a lot, to know that I can always count on you. 

When mom knew I was autistic, the thing she felt most sad about was you.  She may not have ever told you this, but, up until the time that things changed with me, she always thought how lucky she was to have two boys that were going to be such good friends as they grew up together.  So when she knew that things would be different with my problems, she cried for you, because she knew that we wouldn't have that relationship any more.  She still cries for you because of that.

I wish I could be that friend, in that way that we were when I was so little.  But even though I can't, I am so glad to have you as my brother, my helper, my defender (mom told me how mad you were when you found out someone had bitten me again at school... ).  You are the best big brother I could ever ask for and I love you very, very much.  I always want you to know and remember that, even when I'm making it hard. I know mom and dad think you're pretty awesome too.

Maybe one day we'll play chase again.  I'd like that.

*Head please*

Love,

Josh.

 

*Josh says this when he wants to kiss your forehead - it's his sign of affection*

 

 

What is "normal", anyway?

I wish I'd written this, but I don't think I would have done it justice - this is a fantastic post on the Thinking Person's Guide To Autism that I think everyone should read:

http://thinkingautismguide.blogspot.com/2010/08/arbitrary-normality.html

 

I have felt this way for a long time, so nice to see someone else put it in to words.

ps. I have a post up on the TPGA as well, but it was about service dogs and since I already tortured you with 4 posts on that here, didn't think you needed me throwing more of that around! Feel free to check it out though, if you are interested. :)  I have the Guide on my links page, but you can also just navigate from the post above.

Kids and Food Allergies

*Originally written for Momversation*

 

Unless you are one of the fortunate few who has the rare child or children who will eat anything you put in front of them, you are familiar with how difficult it can be to feed your picky little ones sometimes.  Whether it’s a phase or something more, it is one of the most frustrating things you can have to deal with as a mom.

Sometimes, the situation is far more complicated. Food allergies can not only make an already picky eater even more so but they can also cause a lot of food aversions in kids who would otherwise be good eaters. As if our job wasn’t hard enough, in this case you not only have to find food your child will eat but also won’t kill him. No pressure.

My oldest has 7 food allergies. Seven. And just to be clear, we are not talking intolerance here, I am talking about full-on, anaphylactic shock inducing, need an Epi-pen with us at all times, allergies. We discovered this when he was about a year old.

It was truly a shock to discover just how complicated food allergies would make things. Aside from having to carry an Epi-Pen in my purse (which is always fun at airport security) I have had to become an expert food-label reader. You have to be able to decipher what you are looking at, sometimes things are hidden because manufacturers use terms that you may not be familiar with. Some companies are great and put a list of allergens in bold type at the end of the ingredient list, however, depending upon the allergy, you may not be able to go by that.  There are “common” allergens, like peanuts, eggs, milk, wheat, etc. Those are what manufacturers will often list separately. But that won’t help you with anything that is not considered one of the big ones, so in that case, as in ours, you still need to read every word on the ingredient list. Of everything that might be ingested by your child. Every time you buy anything. Or bring anything home, like from school parties or at Hallowe'en. And companies change their formulations all the time so you can’t just assume that because it was ok the last time you bought it, that it still is this time. Your time in the grocery store and at restaurants increases significantly because of this. I’m also fairly certain it is the reason I am now having to wear bi-focal contacts.

It’s not simply what’s in the food that you have to be careful about, you also have to take note of how/where everything is made. So even if the allergens aren’t in the food, they can still be a hazard. There was a period of about 3 years when I had Josh on a special diet to see if it would make a difference with his autistic behaviors, so between that and Zach’s allergies our grocery shopping trips usually involved 4 different stores. 3 of which were highly specialized and of course, no where near each other.

Class parties, Hallowe’en, birthdays, spending time with friends or family, all involve a great deal of planning and preparation. The school has to have an Epi Pen on hand for him.  I have to be consulted prior to outings or parties and usually have to make sure I supply whatever he might need for any event.  When his class went away to Mt St Helen’s in May, his teacher and the parents who were going with them were in constant contact with me for about 2 weeks prior to the trip regarding meal planning for Zach.  I still ended up sending some things with him.  I had to check ahead with the restaurant they were going to the second night to determine what was ok on their menu for him to order.  When I would take the boys up to visit my mother in Canada when they were younger, I used to bring all the food Zach would need with me for however long we were going to be there.

Given how many things I had to avoid because of the food allergies, Zach’s diet has been fairly restricted. Recently his allergist did some testing and decided that he could probably start eating some foods that had cooked egg in them. Zach has been used to avoiding it for so long, he is extremely reluctant to try them now. I can’t really blame him.

As he moves in to full-on teenhood we are facing some different issues, like, kissing someone that has potentially eaten something he is allergic to… we haven’t really had to go there yet, but, we will at some point. 

And now that he is older and more independent, he checks up on me. “Can I really eat this?”  “Yes, it’s fine.”  “Did you read the ingredients?”  “Sweetie, I’ve been taking care of you for almost 14 years. You’ve only ever had two anaphylactic reactions in your life, one was before we knew you had allergies, the other was at the hospital when they were testing you. You should trust me.” I look over, he’s reading the ingredients himself anyway. Which is actually a good thing, his taking responsibility for himself, so I let him read. My eyes are grateful for the break.