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I got schooled last month

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After 5 months of steadily escalating behaviors and frustration, Alex had an evening where he was so upset I realized something was wrong, really wrong.  He was wide eyed, in constant motion, verbalizing loudly and biting the end of the couch with a force that scared me.  There were no triggers I could see, the house was quiet, he'd slept well the night before and the day had gone OK and we were having a really relaxed evening.  But now he was beyond upset and I was terrified for him.  For almost an hour he was inconsolable, he wanted me there but he wouldn't let me near him.  I couldn't get him to communicate in any meaningful way, but it was obvious he was in serious distress.  At one point I seriously considered going to the Emergency Room but I had no idea how I could get him there in this state.  When it was over he was sweaty, exhausted and completely shut down.   I knew was this was serious and I was scared, he was desperately trying to communicate something and I wasn't sure what it was.

I dug into my  Facebook group ( PAM; Portland Autism Mom's, a fantastic resource) and started looking for information.  A post about pain expressed as anger hit me in the face.  "Always check teeth first!", the post said.  I ran Alex to the dentist the next day and discovered that he had 4 impacted wisdom teeth pushing against his nerve.   Suddenly all the behaviors over the last 5 months suddenly made sense.  The sudden anger, biting blankets, clenching teeth, excess sleep and a desire to opt out of his day...it all made sense. The teeth needed to be pulled, the dentist told me.  I was so relieved to know that I'd figured out what was going on.  That was followed by a huge wave of guilt.  The last 5 months of behaviors?  It  was probably increasing tooth pain.  I mistook pain for general Autistic teenage behaviors.  How did I get so far off track?

I consider myself an advocate, I'd like to think that I'm a good one but this shook me, I'd made a huge rookie mistake.  I looked at a series of behaviors and concluded that they were, well..... 'behaviors', I wrote programs to try and navigate these 'behaviors',  I changed his schedule to help accommodate the behaviors, what I didn't do was look at the behaviors as communication.  Ultimately it  prevented me from hearing what Alex was trying to say.

I think advocates can run the risk of a kind of arrogance .  Because we're neuro-typical we believe we communicate better, problem solve better, possible know better.  It's understandable how we get there, we're told early on that we are our childrens most valuable advocate and we have a community of people looking at us asking "What does your child need? What do you want us to do?".  Our kids might have limited verbal skills, so we need find alternative ways to communicate.  I now know  that being neuro-typical can be a real disadvantage.  Were looking at Autistic behavior through a 'typical' lens and it's a flawed perspective.  In hindsight, Alex was spending lots of energy communicating and I just wasn't hearing him.

We made an appointment with the Oral Surgeon.  It's a plus that Alex loves anything related to dentistry.  We explained what was going to happen, watched some videos on YouTube (wow, who knew you could see videos of wisdom teeth being removed) and 2 weeks later he all but ran and jumped into the Oral Surgeon's chair.  45 minutes later we were on our way home.  Alex hated the stitches in his gums immediately pulled them out.  FYI, I'd recommend no stitches to any Autistic getting their teeth pulled... those little ends of the stitches are TOO much to take.  I was panicked about the stitches being pulled out so we had the surgeon check him out the next day.  Apparently stitches are optional in the healing process so that was good news.  A week later he was almost up to speed and healing nicely.

And the frustration levels?  Down, way down.  Now that he's not in pain  his old self has returned.  All those motivational programs I wrote?  I haven't used them in 2 weeks.  His baseline of happiness has returned.  I now realize it must have taken everything in him to navigate the nerve pain and move through his daily routine.  And it definitely explains why he would fall into bed the first chance he could get.

It was a reality check to have made such a rookie mistake.  I KNOW behavior is communication.  I've stated this to others, overflowing with motherly confidence...'Behavior is Communication!'  I've said over and over again.  It makes me realize that I have to constantly evaluate what I'm thinking.  I am not Autistic and I need to carry a healthy dose of self skepticism when I'm making decisions based on behaviors.

Lesson learned.

 

 

 

 

 

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Motivation and the long game

 

I've spent the last two weeks focusing on motivation.  How do I motivate an Autistic teenager to want to participate?  How do I guide him to 'choose' to do something that is almost always challenging?

Alex's sensory processing issues, difficulty with speech, puberty and being a teenager affect his daily abilities.  His can be supported with schedules, choice, sensory supports and flexible programming but it doesn't change the fact that sometimes getting up and facing the day is a huge task in itself and it's followed by another day...and another.  

I've been reading articles on Autism and motivation I found this post at TeenAutism.Com, it did a nice job explaining the basic structure of motivation.  Tanya explains that when your young you use Extrinsic Motivation, it's a fancy way to say you earn rewards or face consequences from others based on your performance.  It also means that someone else (me) is in charge of delivering rewards.  It's pretty much the way I've structured Alex's days since he was diagnosed. 

When you approach adulthood, hopefully you move towards Intrinsic Motivation, you work without immediate rewards delivered by another person.  You work because you understand the value of work.  You work because you take pride in helping others or you value participating in a community, maybe you collect a paycheck but the reward isn't directly tied to the completion of the daily task.  You work because you choose to.

Alex seems to be in a space between the two, after years and years of schedules and rewards he's avoiding things that looks like Extrinsic Motivation, and this since I've been the one to hand over most of the rewards my input is also being avoided.  He wants control over his day and his rewards.  I understand his response.  Under the Autism or maybe I should say along with the Autism is a fully formed person that wants what to live his life without someone always telling him what's happening next.  He realizes he's different, that his Autism affects his abilities but it doesn't change the fact that he wants more control. 

 If he's going to become independent he has to want to become independent.  I can't make him want it, but hopefully I can point out the path that gets him there.

Every day seems to present a slightly different Alex.  Today he's balanced, happy and up for participating but it's followed by him putting himself to bed at 8pm (yep folks, the kid that barely slept for the first 10 years of his life puts himself to bed at 8).  The next day, after 13 hours of sleep, he refuses to get out of bed, he's a silent rock.  He's made a decision and he's not budging.  After 12 years of schedules/rewards, he KNOWS not going to school or work has consequences, he's made a decision, he'd rather stay in bed than get any rewards. 

So what's the response?  Well, I'm trying to figure that out.  The first thing I did was take myself out of the picture in the mornings.  Alex doesn't seem to want to get up for me so I asked his dad to take over mornings.  Alex hasn't been  happy to get out of bed but he's done it with almost not resistance.  Dad walks in, says "It's time to get up." and 5 minutes later Alex is up and dressed.  I'm actually pretty shocked at how fast things changed when I took myself out of the situation.  I'm calling this the teenage elephant effect.  Do teenage males seem to respond to older males in a way that, well, just seems to work? It's making me wonder if I need to cut down on the adult female instruction for a bit.  Anybody with a kid in Special Ed knows that it tends to be dominated by females, maybe this is an issue that needs to be looked at when were talking about adolescent Autistic males.

 I also created the "Today I feel..." chart.  My hope is that Alex can tell me how he's doing, if it's an overloaded day he understands that he can opt out of the day.  More importantly, he see's that we get it.  Some days things everything is a challenge, if he wants to opt out he can.  My dream scenario? That would be the day he's almost overwhelmed but he chooses to give work/ school a shot.  That would be a example of Intrinsic Motivation success.  

So I'm allowing for overloaded days when 'nothing happens'.  Right now every 5th day seems to be a shutdown day.  Sensitive and overloaded days come with a matching pouch that has sensory aids.  

 

 Sensory Pouches.  Alex decided if he needs one each day.   

Sensory Pouches.  Alex decided if he needs one each day.

 

Will this lead to Intrinsic Motivation?  Who knows?  I'm hoping it does.  What I do know is that I'm not punishing him for having a rough day.  That's always my second goal, don't punish the sensory system for not working.

The long term goal for Alex is independence.  That's what I keep coming back to when things get complex, and it's complex right now.  This feels like the hardest goal I've tackled but it's THE goal, the one that gets Alex to the finish line.  

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Flexibility

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Flexibility is invaluable if your living with Autism.  Things can change in the blink of an eye, one minute your laughing with Alex and then suddenly he's covering his ears and asking you to stop talking.  I know it's not me, I mean it IS me, but it's not personal, he just can't take the auditory input anymore. He needs me to change direction, his brain can't use his ears so I need to find a different way to communicate, maybe visually or mouthing the words.  Or, as I learned this week, he could be going offline, all his systems could be shutting down.

Almost all of last week seemed offline.  I can't tell you exactly why it happened,  I could make some educated guesses but I have no real idea.  What I did have was a 17 year old that would not get out of bed, for almost 5 days.

On Monday I was able to get him to wake up and get dressed but the second I turned around he was back under the covers.  At one point we were both walking out the front door when I realized he wasn't behind me, he had gone back upstairs and gotten in bed.  Alex had gone full Gandhi on me, he was buried under his covers and he was completely silent.  I couldn't get him to speak or acknowledge me.  Let me tell you, Gandhi's tactic of non-violent, non co-operation is a wildly effective strategy.  I had no real options, anything that would get him moving would require me to become aggressive, assertive or punishing.  I'm not against a more aggressive approach but I felt something really odd was going on.  Alex was trying to communicate something to me but I couldn't tell if this was a physical, emotional or behavioral issue.  So I dropped all plans for the day, no school, no job, no outings, I wanted to see where this went, and it went nowhere. For the next 3 days he was in bed for 20 out of each 24 hours, I've never seen him do this before and I have to admit I was pretty freaked out.  By the third day I took him to the doctor (he checked out just fine) and started digging into Google (always a confidence builder).  Then, just as I was ready to start scheduling appointments with specialists Alex bounced back, he was up, full of energy, eating, happy and ready to go to school/work.

I'm starting to think this is what the teen and early adulthood years are going to look like.  It's going to be a bell curve.  There will be times where he is so integrated and balanced that he could pass for typical.  There will be times when he is so dis-integrated that he almost can't function, and there is the huge space in between where he spends most of his life. 

It's more complicated than I thought.  I think I expected things to become more integrated as he aged and to stay that way, but it's much more fluid.  He's moving back and forth on the bell curve.  That said, even after the hard weeks he bounces back.  This week has been one of his most integrated weeks, Alex got himself up, did all his work and seemed happy to do it.

So I'm deciding that I need to stay focused on the idea of flexibility.  I can't expect every day to be the same, his brain just doesn't seem to work that way.  I also can't let a challenging week shake me from the belief that a good week is coming.  The goal is to teach Alex how to navigate and advocate for himself.  

Last week makes me even more thankful for jobs that are volunteer positions.  There is less of a penalty for not showing up to work.  People might be disappointed but it's understood that if your working for free you might have to miss a shift now and then.  It's all about flexibility.

 

 

 

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Three Generations of Autism

Tuesday was an interesting day.  I was Alex's shadow at the Thrift It! store because his aid needed the day off.  I took Alex into the store and looked for a hidden corner to hide in while he did his work.  His job is to pull clothing that is being clearanced, he gets an empty rolling rack from the back, finds out what color tag is being discounted and goes through the inventory on the store floor looking for the right color tag.  From my perspective it's a great job because it captures him, there is no real lag in the job so there is no real opportunity to get distracted.  To me it feels like knitting, you don't really have a stopping point but you can also see how much progress you've made.  It quiets your brain down.

After watching Alex sign in and get set up for work and finding a nice place to be invisible I noticed a pair of women walk in.  I'm not sure why they hit my radar, maybe it was because there was no verbal communication between the two, but suddenly I was watching them.  I noticed the woman had foam earplugs in and suddenly it made sense... Autism.  The older woman looked like an aid and the young woman (mid 20's I'd guess) was Autistic.  

I watched them out of my peripherals while they shopped.  The woman seemed to know she should stay by the older woman and the older woman seemed to be shopping.  They were in the store for a good 40 minutes.  I watched the young woman as much as I could, she knew to stay with her aid, she occasionally jumped and there was a bit of hand flapping but she might not have hit your radar if you didn't know what to look for.

At one point all three of them were in the same isle, Alex pulling clothes off the racks, the 20 something Autistic woman, flapping her hands and the aid looking at clothing.  

My first thought was worry for the young woman.  Is this what she did all day, get paired with an aid that took her on errands all day?  Did anyone see her potential?  What was her story?  

I tried to engage the aid a couple of times and was shut down quickly.  It only made me more interested.  All I could think as I watched her was her potential being wasted.  I realize that I could be wildly projecting here.  I don't have any real information what her disability was and it's possible that a job was not a possibility for her, but maybe it was!  

When we wrapped up I stopped to chat with a staff person , and she was probably the nicest woman you'd ever meet.  A few months ago I found out she has a son on the spectrum.  This made three generations of Autism connected to the store that day, an adult, a teenager and a child.  We chatted about schools and classrooms but all I wanted to do was tell her that her  kid is full of potential.  That he can have a full life, independence and meaningful work.  It might look a little different and it might be a longer path getting there but it's possible.  This generation of Autistics will change how we all see Autism.  By the time Alex is in his 20's he might have foam earplugs on, he might still jump and recite Disney movie lyrics but he will have his independence, a job and a full life.  

 

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A really good day.

Howard Kenyon, the program manager at our food pantry job, asked the three of us to speak at their breakfast fundraiser last Wednesday.  He wanted us to talk about Alex's experiences volunteering at the pantry.  Of course we said yes, how could we not help support an organization that has given us so much? 

Public speaking is not my passion, I have the classic panic response of a novice speaker (and I won't be posting my speech) but I'll do anything for the food pantry or Alex, so up we went. The fundraiser was exactly the kind of event I would have skipped years ago. The average age of the crowd was around 40, there were no kids in the audience and it was very attentive and polite group. This was not an event about Autism, so I wouldn't expect many people to understand the challenges this kind of event puts on Autistic people.

I came prepared, Bruce, Jen and I all went together.  We were seated in the front at at table with 4 other people, right next to the stage.  We brought a backpack full of things we felt we might need to keep Alex comfortable for a 40 minute event.  You know the drill, right?  Look calm and keep a placid smile on your face while you are tracking your kid non-stop in you peripheral vision.  You watch all their movements, prepared to offer something to chew, manipulate, hold or distract the second they look frustrated.

And we were ridiculous.  Alex did fine, it was one calm 16 year old and 3 adults that looked manically preoccupied.   Alex seemed to noticed everyone was sitting and he decided to stay in his seat as well.  He noticed other people were quiet and he was quiet. When other people clapped, Alex clapped.  He did have to keep his hood up and he wanted to hold the two Blow Pops we brought in his hands the entire time, but really don't we all want to do that?

We spent a few minutes the day before helping him practice his speech, and we made sure to ask him if he was OK with speaking, "Do you want to go up on stage and talk about your job?" we asked, "Yes." Alex said.  He must have been telling the truth because when it was our turn to speak Alex bounded up to the stage.  We pulled out the index cards and he belted out his speech.  It was fantastic.  Alex looked fearless and the speech went great.

 It's hard for me to look back and see how far we've come.  I'm definitely a 'what do I have to do next?' kind of person.  I have the 'to do' list, followed by the 'things in the near future' list and the 'things in the distant future' list.  Looking back feels like a distraction at best and at worst a waste of time.  Wednesday morning though, I looked back.

He matched other peoples demeanor  by choice or ability, I'm not entirely sure which.  He spent a lot of time watching other people at the event, it seemed like he was taking his cues from them.  I'm don't put a lot of emphases on Alex 'passing' for typical but I definitely notice when he isn't hitting anyones radar, that morning he was definitely off the radar.  Five years ago this event would have been a production.  We probably would have sat near an exit, we would have been prepared to take Alex in and out of the event to keep him occupied, we would have made it work but it would have required a LOT of modifications.  Today though we needed almost none.  It was a big moment.

It's possible it was a bit of a fluke, maybe his sensory system was working well, maybe he was still tired from waking up early to make the event, who knows?  But honestly it doesn't really matter.  He did it, he did it well and he did it in a way he couldn't have five years ago.  

 

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Am I supporting with respect?

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How do I support and respect?  Does one automatically come with the other?  Probably not.  

I have a huge pet peeve with people that talk to Autistic adults (or anyone with a disability) in the 'child voice'.  You know the voice, it's the tone you would use with a 5 year old, slow and high pitched.  The sentences always ending with an upward inflection. I hate it.  To me it feels aggressive, dismissive and disrespectful. But at the same time I understand why it happens.  

People want to help.  People feel nervous.  Maybe they are afraid they are going to offend.  So they try and control the situation, and this is the fork in the road I worry about.  

Alex is going to be 17 in April,  adulthood is here.  I can't pretend that he is a little boy anymore and this is making me question all of my assumptions.  It's a huge puzzle, having a 17 year old Autistic son that you're still raising and supporting.  The lines get fuzzy.  I want to help and I'm nervous.  I know that supporting an adult is totally different than supporting a child.  What I'm trying to figure out is where support crosses the line into disrespect?

Would you walk into the bathroom to make sure that your typical 17 year old son washed himself?  I guess if you wanted to start World War 3 you would.  Everyone would say it's completely disrespectful.  But what if you have an Autistic 17 year old?  That's a different story.  There might be legitimate reasons you would need to check on them.  How do you balance being in the bathroom with respect? 

So lets say your Autistic son hates washing his body.  You've tried visual schedules, rewards, videos and nothings really working.  What do you do now?  Do you stand in the shower and make sure he washes?  Do you open the curtain and tell him to wash, stand outside the curtain and tell him, outside the door?  Now, for fun lets add some sensory issues, he's having a rough week and he's not processing language well.  Verbal instruction isn't working, you might need to hand him the soap to really connect him with the goal.  How do you support him, work towards independence and treat him with dignity?  Can you see why I'm obsessed with respect?

It would be so easy to slide into the idea that he's a child in a man's body.  It would make the decisions so much simpler.  Of course I'd get in the bathroom and make sure he washes!  Of course I'd open the shower curtain and make sure he did it correctly!  Washing is important.  He needs to be clean when he's in public.  Getting clean is the goal.

Except it's not the goal.  Sure I'd like him to be clean but at what cost?  

I imagine what it would be like to be in Alex's body.  I'm Autistic, I'm also intelligent, capable and I like to do things on my own.  My expressive language is limited so I can't verbalize my sense of frustration with situations.  Often my frustration is seen as a behavior instead of communication.  I've had years and years of intense therapy.  I'm starting to push back because I'm tired of the hovering.  

Can you imagine how angry Alex would be if i continued to treat him like a child?  I could get him perfectly washed but it would cost me.  Our relationship would suffer.  He would see me as an obstacle, someone that isn't listening.  He'd feel trapped. 

So I'm using respect as a the baseline for all the independence programs.  It might mean things take longer.  I might need to send him back into the shower after he's already taken one.  I might need to stand outside his door for 20 minutes while he gets dressed and makes his bed (thank god for podcasts).  They say it's a marathon not a race right?

 

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Now or Later?

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I've been mulling over the importance of school.  Don't get me wrong, I'm all about education.  I'm a, 'Do you have a lot of homework tonight?' mom, a 'How's it going in math class?' mom.  I believe in the value of an education and I'm a regular presence in my kid's school.  Lately though, I'm fuzzy about the importance of following a traditional timeline.

I remember reading an article years ago.  I can't remember the title or the author but I remember she was an advocate for adults with Autism.  The author was discussing educational opportunities.  She was frustrated that education ramps down at 18.  Her concern was that there were limited academic opportunities for the low verbal, non-college bound adult with Autism.  Her argument went something like this, 'We spend so much time focusing on teaching our kids how to learn, and then, when they have their greatest skill set, we stop teaching!'.  To make things clear she was talking about academics here, not life skills.

This blew my mind. When Alex entered middle school I joked that I wanted him to do grade school again.  'He's ready for it now!'  I would say.  He could do it with so much more independence and success!  Two more years of grade school would make his academic foundation so much stronger.  We could work on those critical skills we passed on because he 'just wasn't ready'.  I felt the same way when he started high school, please just 2 more years of middle school!  We could do SO much catching up.   It would make all the difference!   But that isn't an option.  Kids move forward into more complex systems.  That's just how the system works.

I understand this is why IEP's are created.  A good IEP is priceless, but the bag of unlearned academics gets bigger with each year. Mix in the havoc adolescence brings to teens with Autism, the classroom can be the last place a teen with Autism wants to be.  And finally what about the kid that starts to loose motivation within this system?  What happens to the kid that's tired of the aids and the extra attention,  the kid that just wants to work without the hovering or constraints of a special ed classroom?  In some ways I feel adolescence is the worst time to focus on academics.

I think this year is a turning point for us.  I started Alex's jobs program because I could tell he was motivated by having more control of his life.  I didn't expect him to blossom the way he has.  I didn't think he would embrace it this strongly.  I didn't think his skill set would increase so quickly.  These jobs just seem more valuable than school right now.  

On Tuesday Alex volunteered at the Thrift It Store, helping to rotate clothing.  He is told what color price tag is getting discounted, he gets an empty  6 foot long rolling rack and sifts through all the hanging clothing for that color tag.  The clothing gets pulled of the regular price rack and hung on the empty one.   Alex filled 5 racks.  He worked 3 hours straight.   He never asked help and his support person never once had to step in.  Alex navigated customers, took direction from staff and followed instructions and job rules independently.  Honestly, whats more valuable, this job or the remedial reading class he's missing?

So here is what I'm mulling over.  Should I delay school? Can i stretch it out over a longer period of time?  Could getting his high school diploma be an 8 year goal?  Could he participate in  the parts of school that hold the most value for him and fill the rest of his time with jobs and hobbies.  On this path he wouldn't earn a degree but would earn  job skills, people skills and real independence.  

So, an academic education now or later?  I'm still thinking.

 

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Watching things shift.

 Brad putting together an IKEA toy kitchen.

Brad putting together an IKEA toy kitchen.

Two articles hit my radar this week. This article looked at the positive effects of employment within the Autism community.  Then this story about a young man in Alberta using his visual talents to start a small business.

I'm excited about the Vanderbilt University/ U-W Madison study showing the positive effects of employment on people with Autism.

“We found that if you put the person with autism in a more independent vocational placement, this led to measurable improvements in their behaviors and daily living skills overall,” said lead author Julie Lounds Taylor, Ph.D., assistant professor of Pediatrics and Special Education and Vanderbilt Kennedy Center investigator.

It seems like a lot of common sense, right?  Half the reason we encourage our typical teenagers to get jobs is in the hopes they become more responsible, show up on time, learn the value of work, etc.  Essentially were hoping they shift their behaviors toward independence.  Well apparently this has the same effect on adults with Autism.

And I couldn't be happier.  This is the wave of research and discussion I'm looking for.  People with Autism are benefiting from having jobs.  Right On!  I'm fascinated with the 'why' questions.  Why are their behaviors improving?  Is it pride in the work?  Is it that finally they see others recognizing that they can (although it's possible there are support people in place) work on their own?  Is it having something meaningful to do in their day?  I can't wait for more research to be done.

Then we have Brad Fremmerlid, what a fantastic story.  Brad can't read, can't speak  but has the ability to discipher IKEA instruction so well his parents started a small business around it.  Here's where I see the real work happening.  Parents and advocates looking at our kids and building a job around their skills.  Again, not so different from what we do with our typical kids?  

It's an exciting time.  A decade ago I was panicked over the future for my kid.  Today not so much.

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Getting Public

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                                                         Geared up and ready to work.

When Alex turned 13 I couldn't ignore the reality that adult hood was coming.  I had to start making some hard realizations.  A cure wasn't coming.  Conversational language may never happen and behaviors (or some of them) weren't going to go away.  This could be the rough outline of the future.

We all go through this.  We grieve when we get the diagnosis, we do all we can and at some point we make peace with what isn't going away.  Making this peace with Autism is a softer grief.  I still think about a life without the struggle but the emotional scar tissue is a buffer.  I  feel pride at how hard our kids work to make gains, so much harder than their typical peers.  And in those rare moments there is so much beauty it's almost painful.

 So I started making my peace with Autism.  I stopped looking at every behavior as as something that needs to be changed or worked on.  I believe that Alex can learn, work and have very visible Autism.  

Making my peace with Autism was the first step.  The next step is getting his community to make peace with Autism, they have a tsunami of adults with Autism headed their way.  The community is going to have to adapt. Somebody recently asked me what I hoped for in Alex's future.  I said I wanted Alex to be part of a community that Alex can move freely in.  I want him to be able to take the bus independently. I want him to be seen as a person living with a disability.  He might be jumping in place, he might be speaking some Disney movie script but he isn't seen as a threat, he's not on crack, he's a person with Autism.  I want Autism recognizable in the way that Downs Syndrome or Cerebral Palsy is recognized.

We do this by taking our kids in public, early and often.  I don't want to minimize to other parents how hard it is.  Our kids can look strange or scary to the uneducated.  I took Alex to the grocery store today.  He needed his industrial headphones, which he likes to wear over his pulled up hoodie.  He weaves through people a little too fast, always seems poised to break out in a run while pushing the cart, (which has happened) he usually has to take a jumping moment when bagging the groceries.  We get noticed.  People get flustered.  I can get the stink eye and comments from strangers. When we finally get to the car to leave I feel like I've worked an 8 hour day. And I'm going to keep doing it.  People need to see that our kids can participate in public life.  Our kids don't need to be separated from their communities.

 This is  the how we put a human face on Autism.  It's the way others see how much our kids CAN do.  The cashiers at the grocery store know Alex.  They always say 'Hi', they are not offended if Alex doesn't always respond.  They know to wait an extra minute (or two) if Alex needs to jump before using the debit card to pay.  They don't act worried or scared at his behavior.  That lady that gave me the stink eye in produce?  She's watching the cashier say "Hi Alex." and wait, wait, wait for him to pay.  She notices that the cashier and I don't look worried when Alex jumps.  She's watching someone with Autism participate in their community.   People got used to Downs Syndrome and Cerebral Palsy, wheel chairs and sign language, they can get used to some jumping and Disney speak.

Our family got some serious stink eye this month.  We also had the Alex's community reach out to us in ways I never expected.  They are ready to accept our kids, they just need the opportunity to meet them.

 

 

 

 

 

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Getting back on the horse.

  cookin nuggets   

cookin nuggets

 

  Were all coming out of the fog.  Some faster than others.  Alex was tired and hungry and had some serious boot blisters. He was also the first to bounce back.  Monday night he was laughing, jumping and cooking chicken nuggets in the kitchen.  Today he was the happiest he's been in months.  I'm still stuck on Sunday.  I can't stop watching him, I've obsessed about ticks, blisters and every scratch I see.  We checked in with ZoomCare to have them take a look at his bit fingernails (an Irvin trait)  I've gone through an entire tube of Neosporin in 4 days.  I want him in my eyesight constantly.  I can tell Alex wants me to stop hovering.  He wants life without a mom that's 2 feet aways from him at all times.  I'll give him the space he wants, not right now, but soon.  I watch him and I feel like I have so much to learn from him.  He bounces back, his default emotion is happiness, and he's one of the most driven person I've ever met.  I want his strength. 

If he's getting back on the horse than I will too.  I feel bruised and raw but if he can do it then I will too.

When things go haywire I try and figure out how what happened and what I can learn.  And one thing I've learned is that you discover more from failure than you ever will from progress.

Things I've learned:

1.  Things I feel we have resolved might not be.

2.  Alex can do more now and this can get him into trouble.

3.  Putting your kid in the community builds a community.  

     Every day this week Jen has come home with stories about people wanting to talk to Alex.  People Alex works with or interacts with have reached out.  It's hard for me to talk about this right now, my emotions are still raw.  But I will tell you this, the community embraces our kids.

What I'm processing:

1.  How I balance independence and safety correctly.

2.  Rethinking communication.

   In a fit of mania I decided to start using Proloquo2go.  Because Alex can speak (need driven speech) I never seriously considered assisted speech devices.  I've decided to chuck my theories.  We need a way to talk about what happened last weekend.  I'm also hoping it will lower his general frustration level about speaking.

My New Goals:

1.  Find a new physical activity for Alex.

2.  Build more connections with Alex's community.

     I'm going to start posting interviews with people Alex interacts with in his day to day life.  I underestimated the interest they have in our community.  I think I have a lot to learn from peoples observations and opinions about our kids.

3.  Focus more on what Alex has to say about his life.

    He has opinions.  I need to spend more time giving him a voice and letting him have a say in what his life looks like.

 

And, thank you.  Thank you to everyone that said a silent prayer, that read without judging or judged but held their tongue.  Thank you to all our friends, family for supporting us.  Thank you to BCQ and EG you left lovely comments that had me in tears.  Ok, time to get to work, there is plenty of stuff to do.....

 

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Failure and Terror

 My new must read.

My new must read.

This weekend was horribly terrifying.  It's amazing how your iphone becomes a record of what happened and when.  Bruce, the girls, two sets of friends and their kids went on a hike near Horsetail Falls Loop Hike.  I'm always nervous about hikes.  Bruce knows to start all hike phone calls with the phrase "Everything is great." because I've never really resolved my anxiety about their hiking.  At 5:07 the phone rang.  Before I had a chance to say anything I heard Bruce say "I have to tell you that Alex is missing." 

The pit you fall into is deep.  Things go dark and you can't  think through the panic.  You know you have to make decisions but you're so flooded with adrenaline that you can't quite move.  It takes you three times to correctly dial a phone.  I know that I 'split' during traumatic situations.  I stuff the terrified part of me in a box and try to look at the situation from the outside.  I seem calm but I can't stop shaking.  By 6pm I had the girls taken care of and I was on my way to the trailhead.

It's hard for me to look back at the next 24 hours.  It's all emotion. Panic and terror that Alex is scared and in pain.  Anger at myself for letting him go on this hike, so much anger.  

Alex was lost in the woods 5 years ago.  He spent two long cold nights in the woods when he got too far ahead of Bruce and took a wrong turn.  The morning after the second night he walked himself out.  He came into  the parking lot unnoticed, found  the car where his dad was sleeping and said he wanted to go to McDonalds.  I was sure we had used up all our personal luck for a lifetime.

We spent the next 5 years making all the accommodations we could think of.  Tracking devices, whistles, backpacks packed with gear for day trips.  We focused and Alex learned.  The horrible truth is that we got complacent. When the tracking device got stolen we didn't buy another,  Bruce started carrying a pack for both of them instead of Alex carrying his own.  Alex's skill set grew and we gave him little bits of freedom like walking the last 100 yards alone to the car.  We gave him too much independence.

I sat in the dark car last Saturday night full of shame and self loathing.  I was an idiot.  This was all my fault.  My son might die and all the responsibility falls on me.  

Search and Rescue staff are some of the most amazing humans.  They show up at any time, ready and usually excited to search.  They are givers.  They want to help.  I didn't feel worthy of them.  They were sensitive and compassionate when all I thought I deserved was disgust with my actions.

The next morning at 8:30 Alex found some cabins with campers and approached them.  911 was called and two hours later Alex walked out of the woods again.

 The end of the hike.

The end of the hike.

I'm still processing all of this.  My mind is still trying to get a foothold.  I've got choices to make and work to do.  But first I just need to spend a lot of time looking at Alex.  I know he's fine but I need to just sit with him and make sure.  And read, Joseph J Koester "Lost Person Behavior" has been moved to the top of my reading list.

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The Decision Tree

decision_tree.png

It's been a rough couple of weeks for Alex.  From my perspective he is tired, easily angered, having sensory issues (hearing and taste are particularly affected), hyperactive in the evenings and generally disinterested in following any kind of a schedule.

When Alex was young I called this the 'fog'.  The fog was something that rolled in every 6 months or so.  Alex's sensory system would be working well, he could eat easily, sleep fairly well, be able to focus and do his work with little redirection.  Sweet, easy progress.  Then it would shift.  He suddenly couldn't tolerate sounds, normal food would make him gag, sleep was hard to come by and his energy was through the roof.   The funny thing about 'the fog' was that he could still work.  Work seemed to focus him.  Independent math worksheets or detailed art projects could calm the inner noise and give him relief.  After a few months the fog would disappear and he would have another run of calm (or calmer).

After 6 months of great progress were back in a fog, but this time it's different.  Alex has a large set of independence skills that continue to exist, but it looks like he's walking through quicksand when he's using them.  He's picks up the toothbrush to brush his teeth and then stares at the faucet for 3 minutes.  He gets ready to go to school only to crawl back into bed and fall asleep.  Instead of washing a table he pulls out a chair and stares at us.  It feels like he knows what to do but can't quite make it happen.  We have to be more involved to help him succeed but being more involved triggers his frustration.  It feels complicated.

Because I don't have Autism (and Alex's language is limited)  I'm always looking at this from my flawed neurotypical perspective.  I can see the symptoms and I can come up with theories but ultimately what I decide is a guess.  I could be wrong.  Spend 20 minutes reading blogs by adults with Autism and you will get plenty of examples of advocates trying to help but making the situation worse.  I always have a voice in my head saying 'You could be making a mistake.'  Sometimes it's like torture but I've learned that the upside to questioning your decisions is that you avoid getting locked into a path.  If I'm already questioning my choice it's easier to pick a new one.

I've got at least three possible reasons for Alex's new fog.  There is the pre frontal cortex possibility, Alex's decision making and delayed gratification skills could be offline right now but will restart in a few years.   I like this option because it means this will eventually end and that I just need to focus on being consistent and patient.  The second reason could be hormone fluctuations and puberty issues, I KNOW he is still in this phase.  The third possibility is Alex's 'Social/ Emotional Age', this theory says that Alex is 16 in physical years, his social/ emotional age could be much younger, possible much younger, again consistency and good programming will help.  Or it could be a mix of all three.

Then there is the possibility that it is me.  My decisions could be flawed, I could be missing something important.  Alex could be trying to tell me something and I'm not hearing it yet.  I'll spend most of this week watching, making notes, hoping I can latch on to some information that will help me decide if I need to change anything.  Or I'll spend all week watching and things will work out on their own (it's happened before).  It's going to be a long week (or weeks) but hopefully I'll come out of it with information.  For me information is the key.

 

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Start, stop then start again.

 She took the brunt on the anger.

She took the brunt on the anger.

Each day is it's own surprise when you have a teenager with Autism.  Add puberty and you have the wolds worst slot machine.  You pull the lever each morning and wait to see what comes up.  It's often new and often odd.  One day his auditory system is broken, the headphones are on before he  even gets out of bed, the verbal stims are through the roof, he seems completely unfocused and then he has the most focused day at work EVER.  The next morning he lands at the other end , focused, happy and completely unable to complete a task without being fully prompted.  Everything is jumbled and the goals get confusing.  Should I be focusing on the daily behavioral fluctuations?  Is sticking to his schedule the most important goal?  What do I focus on?

This morning was unusual, a 'WTF is happening?' unusual.  Most mornings I use a schedule/reinforcer to get Alex up and going and it works.  This morning?  Nothing, not just nothing but behaving as if I wasn't in the room.  No eye contact, no body language and absolutely no responding to my questions.  I didn't exist.  He was passive and completely ignoring me.  It went on for a good 10 minutes.  Nothing I did worked.  I now understand why Gandhi's Non co-operation movement was so powerful.  I literally didn't know how to respond.  Alex had the upper hand.

I pushed a little harder.  I gave it a good 'Alex, it's time to get up and get ready.  You need to get up now.'  This was met with flat out anger.  Alex's anger is generally self directed, lots of clenched fists, growling and biting the nearest soft item (the Ipad cover is a favorite).  This was intense.  Nothing I said calmed him down.  He was either committed to raging at me or borderline out of control.  I was not going to win this one either.   I knew I needed to have some kind of response but I had nothing and slightly was slightly freaked out.  So I left.

When I'm in complex situations that are not working my natural response is to pull myself out and observe.  I can get cleaner information and I won't make things worse.  So I walked over to his windows, closed the curtains, turned off the light, walked out and shut his bedroom door.  I took myself out of the situation hoping he would calm down,  I knew I wanted him to calm down, beyond that I had nothing.

My next step is question roulette (second worst game).  Is the goal that what I say goes? Or that  Alex gets up?  Is the goal that he isn't allowed to be angry?  Or that he can't express his anger?  Why is he angry?  Is his sensory system a painful mess, could he be in physical pain or having hormone surges?  Is he just being defiant?  What is my goal here?

So I default to the longest goal I can think of.  Which is this, someday I want him to get up on his own, have a morning ritual and get himself ready for his day, without my help.  So I went downstairs and rewrote his daily schedule.  Ok Alex, no school today,  you can stay in bed longer.  I'll let you come to me.  When you does I'll give you your new schedule (less the big reward because you skipped school).  You can decide.  You can choose to get ready again on your own or have a really boring day at home.  

He bounced downstairs 20 minutes later.  The dark angry clouds were gone.  I handed him a written schedule and waited for him to read it.  I'm sat at the computer trying to look busy.  You know that moment when you realize that parental power is just an illusion?  That it's all a bluff and relies on the  belief that we have power?  That's the moment I was sitting in.  Will this 5'6'', 160 lb, 16 year old teenager believe thats it's in his best interest to follow the schedule?  He's got a choice, if he pushed me hard enough there isn't a lot I could really do to force him.  He chose to get ready.  He had a good day at work.  I was ready for a glass of wine by noon.

Creating independence that isn't enforced by aggression or punishment in someone with Autism?  It feels like uncharted territory.  I hope I'm doing this right.  There isn't any real road map.  Just the hope that each day he will choose to try.

 

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Learning the language.

language.jpg

Several conversations hit my radar this week, conversations about  behaviors when our Autistic kids hit puberty.  It usually goes something like this "Suddenly my kid is defiant/ angry/ violent/ dismissive about doing everything.  When I try to make a reinforcement schedule they ignore it.  When I generate consequences to their behavior gets worse.  I've tried everything and nothing is working."

And it's true.  I thought I ran a pretty tight ship when Alex was young.  I had my ABA and my RDI,  OT, PCS's and my schedules and reinforcers, things get bumpy but progress was being made.   Then we hit 7th grade.  Alex started to look disinterested.   We had to push harder to get him focused on his goals.  When Alex earned his rewards he latched on and wouldn't let go, getting the iPAD back at the end of a 'break' was a small war, sometimes he just calmly ignored everything we said.  Things felt like a constant tug-o-war and I was on the loosing end.  We added more breaks, adjusted his schedule, made more detailed schedules, wrote social stories, added more valuable reinforcers and had weekly meetings but nothing changed.  Alex wasn't motivated and it seemed like he was starting to hate school.

We made it through 8th grade by the skin of our teeth.  I had weekly calls from school that Alex was having a rough day.  I was constantly working with teachers, I felt like I was spending as much time in school as Alex.  Nothing solved the problem, everything felt like bandages on a hemorrhaging wound.  Was this puberty? Were we in the wrong classroom/ school?  Was he in pain?  Should I reconsider medications?  All I had was questions and an unhappy kid.

High School started.  Things went well for the first 3 months then the #$*& hit the fan.  Sensory defensiveness, jumping, self-speak mixed in with huge mood swings, anger and a complete disinterest in participating.  Again with the meetings, phone calls, plans, schedules and again with limited progress.  Then Alex did something I now find fascinating.  He would ask to go to the bathroom during class, he would walk into a stall, lock himself in, sit, refuse to talk and refuse to come out.  Nothing got him out and he refused to talk to anyone.  The only thing that got him to come out?  I said  that  if  Alex came out and did 10 minutes of homework I would take him home.  Coming home became the most powerful reinforcer I had to get him to go to school.  This was crazy.  What was going on?

I looked for anything written by adults with Autism.  Maybe there was an answer there.  What I read really shook me up.  I spent a lot of time digging through the Ballasteistenz blog.  It's a difficult blog to read, equal parts terrifying and beautiful, she gave me a challenging perspective.  She reminded me that there is a fully formed person under Alex's Autism, that Alex is communicating with me all the time, that behaviors ARE communication.  If I'm going to label certain behaviors as unacceptable I run the risk of ignoring (or worse punishing) what he's trying to tell me.  If your typical kid told you he was depressed or hated school you wouldn't threaten to take his DVD for telling you.  You wouldn't explain that depression is an unacceptable behavior.  You would look at his environment and see what needed to be changed.  

Understanding Alex's communication is like constantly learning a new language.  I'm fluent in Alex speak from ages 2-10.  I'm good at ages 11-14.  I'd say I'm a solid intermediate at age 15.  Now that he's creeping towards 17?   I'd give myself a hard beginner.  It's not really that different from how I feel about communicating with my typical daughters, each year they want to be treated differently, sometimes very differently.  But the girls can tell me what they want, loudly and in detail.  Alex needs more deciphering.  Sometimes the only way to figure it out is to toss everything out the window and start from scratch.  At least Alex knows I'm trying to listen.

 

 

 

 

 

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The sensory system's having a rough day.

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I don't have Autism.  This leaves me at a disadvantage.  I understand enough to know that there is a lot I DON'T know.  For me, Autism's impact on the sensory system is the great unknown.

Last week was one of those great weeks.  Alex was calm, happy and moving through his day.  School went well and his jobs went even better.  'Look how much progress we have made!' I'm tempted to say.  But I know it has very little to do with me and everything to do with his sensory system.  

I'm starting to look at Sensory Processing Disorder like the clutch of a car.  If the clutch is working the car can accelerate, slow down and stop easily.  Clutch not working?  You get slipping between gears, noise, jerking, overheating and engine stress.  Things don't go smoothly.  Alex's clutch is having a harder time working this week.   For Alex, a struggling sensory system means a lot of ear covering, pulling his hood over his eyes, flashes of frustration and self speaking (repetitive dialogue from movies).  It's hard to watch him have to work twice as hard to do half as much.  It looks painful.

I was listening to a podcast last week.  I had to stop at the grocery store and I didn't want to stop listening so I left one earbud in while shopping.  I was at the New Seasons on Division during the lunch rush and it was packed.  In the first 5 minutes I almost ran into two people.  I realized with my ears engaged in the podcast, all my other senses were out of sync.  I had to work harder to just move through the store, I kept forgetting items I knew I needed.  I was a mess.  When the check out clerk asked if I wanted the hot foods in a different bag I responded "I'm good thanks."  I literally needed an extra beat to understand what everyone was doing.  I felt awkward, nervous and pretty stressed out.  Is this what it feels like when the sensory system isn't working together?  Is it an extra layer between you and the world?  And on the other hand, can this sometimes be a strength?  I also listen to podcasts when I'm doing boring tasks.  It saturates my brain and keeps me on task.  

So this week Alex's  sensory system looks like it's having a hard time engaging.  And here is where I always have more questions than answers.  Do I lower the bar?  If yes then how much?  Do I focus on how certain behaviors (jumping, loud talking, fast movements) impact others?  Does this feel like judgment added on top of an already fragile system?  Do I simply let it exist understanding that it will pass?  Or does letting it fully exist risk letting it become a pattern?  Is Alex as frustrated with this slipping clutch as I am?  He doesn't look happy.

I'm almost always running on gut instinct in these moments.  Should we go to our job today or not?   Ok, lets give it a shot, if it looks like it's falling apart we can always leave early.  Grab the earplugs, offer your sunglasses or a hat, bring something for him to chew on, cross your fingers and lock the car door three times for good luck.  If he has a meltdown then leave, unless it's really an opportunity to learn how to work through a meltdown! 

The only thing I know for sure?  Alex is going to have to learn to live his life with this clutch he has been born with.  I can't get him a new one.  I can walk with him and help him learn about it, what it's quirks are, how to take care of it, what to do when it breaks.  But in the end he has to learn how to live with it.  I think he can.

 

 

 

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Changing the discussion.

Controversy.jpg

If you follow current news in the Autism community I don't have to tell you about the firestorm thats been burning the last few weeks.

Suzanne Wright co-founder of Autism Speaks published this letter, it turned out she was also lighting a fuse.

Here is a great breakdown of what happened next.  Were watching the explosion of one of the most important discussions our community needs to have.  For me it boils down to  2 issues.  Do people with Autism get a seat at the decision making table and do we continue to look at Autism as a disease in need of a cure?  

I've always had an uneasy feeling about my decision making for Alex.  I'm  100% committed to being his advocate but I always worry that I'm not giving him enough say.  Autism, communication disorder, teenage hormones and general male energy don't foster long heartfelt conversations about how well math class is going or if you like your new job.  I almost always find myself having to make choices based on limited information, a lot of observation and a good dose of following my gut.  There is always a good chance that I'm just plain wrong.  Personally, if your doing this job well your always considering that your opinions could be wrong.

I'm excited to watch the Autism community organize.  It's going to be a challenge for them.  Autism looks wildly different in almost every person living with it.  And if you've ever had the pleasure of hanging with people on the spectrum you know this is an opinionated group!  It's going to be a fascinating shift and I can't wait to watch it evolve.

I want the input that they have to offer.  I want their perspective on housing options, employment, socializing and independence.  I'm tired of making all of these decisions myself.  I'm an advocate but I'm not Autistic.  I shouldn't be sitting at the decision making table all by myself. 

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Setting the right tone.

It's complicated, figuring out how to interact with your Autistic child in public.  Do I make it obvious that he is navigating a disability?  There is a real upside to making your kids issues obvious.  It generates sympathy, accommodation and hopefully a little less judgment from others.

The judgement issue is huge.   We all have had our horrific experiences in public.  When your trying to teach 'how' to behave in public it usually means having public meltdowns.  When Alex was 10 he walked out of Target with a video I hadn't noticed.  It was that classic moment where you think 'Just go home, take the video from him and go home.'  My problem was that Alex learns patterns fast and if this video made it home I knew I was in trouble.  We walked back to customer service, sat down and I explained that we had to leave the video here.  it wasn't on our list, I explained, taking a video without paying for it is against the rules and if he returned it we could come back tomorrow and buy it.  Total chaos ensued. The calmer I stayed the angrier Alex got.  Alex was mad, he let me and all of customer service know it.  Things ended with Alex bolting out the doors of Target and running to our car.  Best part?  A stranger  in the parking lot yelled that I was putting my kid in danger letting him run in the parking lot.  A beautiful public Autism moment.

For a long time I was a snowplow mom, people were going to know that Alex was different and give us a wide berth.  I'd use a different kind of speech pattern with him when we were in public, a little slower, highly edited kind of speech.  It was effective at getting Alex's and usually others attention.  I called it my therapist voice.  The problem  with being a snowplow? Nobody attempts to communicate with Alex.  People realized something was up with my kid, I seemed in charge so lets just ignore the kid and talk to the mother.  All this opportunity for social interaction goes to waste.

So we changed direction.  We knew Alex could handle certain social situations like ordering fast food or paying for groceries.  Lets stand with him but opt out of the social interaction.  Let's let Alex take the lead.  

Want to see 'uncomfortable' with a small side of judgement?  Stand next to your kid while he's ordering food, watch as the cashier doesn't quite make out what he's saying, stand silently facing your kid as the cashier stares at you and says "What did he say?"  Repeat 3-4 times until the cashier finally figures out what was ordered.  Alex learned fast but the public, not so much. 

 But Alex learned.  That was the goal here.  It was a struggle (and still is) for me to not get frustrated with other peoples reactions.  I knew this was working for Alex, he would bound into the store, reach out for my debit card and take his place in line.  Alex wanted this independence.  He was ready to do the work.  But public reaction is always a struggle.  

There are bright spots.  At Alex's regular spots he's now known by name.  People know what he's going to order and want him to succeed.  I force myself to remember this when faces with somebody that decides to treat Alex like he's an annoyance. 

I'm working to be more like Jennifer.  She is hardcore when it comes to independence.  Jennifer has been known to crouch below counter level when faced with a cashier that refuses to deal with Alex.  Or tell them point blank that they just need to listen to what Alex is saying.  It's a beautiful thing to watch.

About 5 years ago I started rethinking how I talk to Alex in public.  I began to notice that people look to me to set the tone.  I'm  now obsessed with speaking to Alex in a typical way.  He gets treated just like my other teenagers.  Now that Alex is 5'7'' if he is in a bouncy mood he stands out quickly.  Alex gets stared at and then eyes quickly travel to me.  You can feel people thinking 'What the heck is going on with that kid?  Is that the mom?   Should I be worried?'  Here is where setting the tone is so important.  You can hover but it often just elevates the tension.  People sense that your anxious so they get anxious.  Now your just sitting in a ball of tension and any chance of independence goes out the window.  Everyone just wants the interaction to end as quickly as possible.

Were in line at the grocery store and it's crowded.  It's  our turn, "Hey Alex can you unload the groceries and then get my debit card out of my purse to pay?".  No slow language, no forced eye contact, just typical language as were emptying the cart.  Alex is probably jumpy so we get 2 or 3 big jumps in place.  Suddenly all eyes are on us, were on everyones radar.  "Don't forget the chicken under the cart."  I say, ignoring the jumps and the eyes.   Alex quickly gets the chicken and then looks at me.  "I think my debit card is in my wallet." I say distractedly.  "Remember it's my pin number not yours." I remind him.  Now people generally get confused.  They know something is up with my kid but because I'm talking to him normally they feel forced to behave typically.  I've set the tone and it says that Alex is just like the rest of us.  Treat him normally.  And surprisingly, it usually works out that way.  They ask Alex if he wan't the receipt, they hand it to him, and Alex says thank you.  Alex may not be seen as typical but he's being treated as if he is.  

 

 

 

  

 

 

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Hold on tightly.

Sometimes the skies clear.  You realize your kid looks calm.  The jumping, ear covering and constant movement just vanishes.  You don't know why and if your smart you don't ask, you just enjoy it.  It's  a brief look into what exists under their complicated sensory system.  We've had a couple of these days this week.  It's been nice.  

 

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New job plans

  George made me the best soy latte I've had in years.

George made me the best soy latte I've had in years.

One of my goals this year is to help get a coffee cart program started at Alex's High School.  Nothing huge, just a nice cart that sells with drip coffee.  I think it's a great opportunity to mix the special needs kids with the rest of the school.  It's also a real life way to work on social skills.  I'm a fan of getting our kids out of the classroom and into the real world. 

When I heard another school had cart up and running I tracked down the supervisor and stopped by to check it out.  

The cart is located at  The Red Cross and it's operated by the Pioneer Special School Program.  I was  blown away.  

I expected a rolling cart and some drip coffee for sale.  What I found was a full blown espresso bar.  The cart was started as part of a vocational program about ten years ago.  Kids learn their coffee skills at the sister cart in the Pioneer School and help maintain the Red Cross site afterwards.  The cart is stocked, maintained and serviced by the kids.  Staff from the Pioneer School oversee the kids but they don't hover (thank god, I hate hovering).  George was obviously in charge of cart,  having to jump to serve coffee several times during my constant questions.  

I loved everything about this program.  The customers knew George and George knew the customers.  You could feel his sense of pride and accomplishment.  George is getting real life job skills, he's navigating complex social situations, and he's doing it independently.  Beautiful. 

It's unfortunate that the death of vocational education in America occurred just as the Autism epidemic was beginning.  Academics are important but at 16 I'm less concerned that Alex is fluent in Algebra.  I'm looking 10 years down the road, I'm looking for a full life with as much independence as he can handle.  

Time to find a rolling cart and some coffee. 

 

 


 

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Let me say that again.

I'm feeling like an archeologist.  A mediocre archeologist.  I'm realizing that there is what I remember and what actually happened.  Thank god for emails, texts and Jennifer's memory because my working memory apparently needs an aid.  Here are some corrections to the previous post. 

  1. We applied to 18 organizations on Volunteer Match at first.

  •  We cast a pretty wide net when we first applied for jobs.  We got some sort of response from about half of the organizations almost immediately.  Two great jobs came out of this search 1. Lan Su Chinese Garden and 2. Thrift it the Volunteers of America store.       

        2.  It took time to get the jobs.

  • There were lots of email exchanges, an interview I'll talk more about later, questions and a general 'hurry up and wait' feeling.

       3.  We got frustrated with the waiting, so we  applied to 6 more jobs.

       4.  We were very upfront about Alex's Autism.

  •   The original applications were sent  with this message: 

Hello, 

I am seeking an unpaid internship/volunteer position for Alex Irvin.  
Alex has Autism.  He is 16 years old, and lives in South East Portland.  I am in search of a position, if at all possible, for this summer season.  

We are hoping to cultivate opportunities which support a connection to our community. Alex is an intelligent, sociable, and happy young man with a broad skill set. We have had several successes with part time jobs, and are in search of new possibilities. 

Alex will be accompanied on site at all times by myself, Jennifer Kapnek.  I am fluent in his abilities and challenges, and have been working with Alex for more than 10 years. 

Alex's skills include, but are not limited to; organization, stocking, sorting, cleaning, vaccuming, watering, weeding and mowing.  Alex is a competent and strong young man, able to lift in excess of 40 pounds.  We are interested in building his strengths in a clearly defined job(s) which can be accomplished in 1-2 hours during the business day, one or two times each week. 

We regard this as an excellent opportunity for everyone involved, and sincerely appreciate your consideration. 

Warm regards, 

Jennifer K.

  • Jennifer suggested putting together an actual resume for Alex to bring to interviews or attach to applications forms.  It was a great idea.  I'm a big fan of the photo at the top.  It's a shameless tactic and I love it.  If something makes someone pause, or hesitate if they are on the verge of saying no, I'm all for it.  Here is the first resume we created.  I like that it's also a small communication builder.  People have a rough idea of who Alex is and what his interests are.  

 

  Our first resume.   

Our first resume. 

I wish I was more linear in presenting all of this.  The process was a lot of the 'two steps forward one step back' dance.  It still is.  Were on the verge of starting another job search. Now that we have solid information about how Alex has moved through these jobs we have new ideas for what's next.  I want Alex to find a job where he is in some form of a leadership role.  Sound nuts to you?  Yea, it might be, we will see.  This next step is definitely going to be a non-linear dance.  Thanks for sticking with me through this!

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