Boldly going…

This being a short week, and next week being the last full week of school for J, we are kicking “getting ready for summer” into high gear.  Yes, we are thinking of all the fun that can be had, but we’re also thinking of all the hours that J will require some sort of occupation to feel more like himself, and less like that Grumpy Cat from the internet.

Our summer will start with a family trip to Washington, D.C.  My feet are already tired, and I’ve yet to walk an inch.  We have three different maps, and we have selected every single landmark, museum, tourist attraction we’d like to visit.  As it usually goes with maps, it all looks a lot more accessible and close than it would in real life.  And we haven’t even factored in weather.  I have, however, factored in our ages, the persnickety nature of my bladder, and the fact that my heel now decides to take ten minutes to warm up before I can walk without looking like Long John Silver.

J hasn’t yet fully grasped the concept of “we’re going on a road trip,” but it’s mostly because he’s so focused on “school is almost out!!!!”  There is the usual combination of excitement and dread attached to this focus.  There are moments when I wonder if he’s just “let’s get it over and done with,” or if it’s “I can’t believe it’s almost over!!!”  I had hoped that he’d be more into working in the garden, but there are two dogs that live about six units away from ours, and they are barkers of the most excitable and persistent sort.  J sees them out there (he approaches the railing gingerly, cautiously peering to see if they’re there,) and once the first, sharp, relentless bout of barking happens, my son dashes into the house like his life depends on it.  That the dogs are usually allowed to roam about their (unfenced) backyard without leashes adds to the stress.  That the dogs will bark insistently regardless of how often they see us…well, let’s say we question their sharpness of intellect and the acuity of their eyesight.

Our garden, by the way, is doing quite nicely.  We have put enough effort in to make it a good little garden, and we’ve learned from past mistakes and have decided to be more discreet.  The abundance of herbs is in response to J’s up-and-coming cottage industry manufacturing soaps.  Yesterday we made a batch of soaps, and it was slow going, but it will get easier, more efficient.  J certainly seemed to enjoy it, and he was very happy writing his name on the labels.

This weekend I am mailing samples of the soaps to the ten brave souls who have volunteered to test and rate the products.  This doesn’t mean that we’re ready to launch, but it does mean that we’re ready to get ready.  The process is slow, and we’re not rushing it either.  We want to make sure that when we decide the time has come to go “live,” J is ready for the pace of work that this entails.

Our main strategy is to diversify J’s work as much as we can.  We have homed in on some areas that we’d like to explore: soap making, screen printing, block stamping, ceramics, and paper products.  For some of these we will be combining skills so that J always has something to do, and so that he can be as creative as possible.  The craft supplies closet has become a very convoluted and interesting place.  I am going to address it as soon as I figure out a friendlier way to organize it…maybe when we come back from D.C. and I feel the urge to sit for hours, sorting this, that and the other.

There’s a lot of reading and note-taking involved in all this.  There’s a lot of brainstorming, discussing, suggesting, outright nixing, flashes of inspiration, and going off on wild tangents.  Once in a while I have to rein in my wild imagination, and my optimistic view of things; I often remind myself that to everything there will, hopefully, be a season…and that season might be autumn or winter, or maybe even next spring.

J’s spot in the I/DD Waiver wait list calls for seven years of patient waiting, and we cannot just sit idly until something happens in that particular department.  SO we’re being as bold as we can be within our circumstances, and we’re willing to try something that may end up being a magnificent wild goose chase.  It beats waiting.  It beats feeling frustrated and let down by the system.  It’s a lot of work for everyone, and J might decide he’s not into it at all.

Ten days from now school will be out, and we’ll have to rally and help J adjust to this new routine.  A year and ten days from now, the routine will change forever and we’ll adjust to that, too.  There’s nothing that says we can’t be bold and decisive at a modest pace.  Our courage is not diminished by our discretion…it’s just dispensed in smaller, more prudent quantities…

Right?

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My problem with Donna Beegle’s story…

When a headline announces that a child has been kicked off a plane for being autistic, my first reaction is to go “WHAT?????????”  My second reaction is to back things up a bit and read every single shred of information on the matter.  A feeling of horror and mistrust creeps into me, and I wonder “will J ever be able to travel with us????  Is the world really as screwed up as that?”  The portrayal of the neuro-typical world as being populated with an endless amount of Simon Legrees is pretty overwhelming and scary.

Dr. Beegle’s account of the incident during which her fifteen year-old daughter, who is in the spectrum, was removed from a United Airlines flight that had to be diverted because of the pilot’s safety concerns can be found on Facebook.  There are, of course, several news stories regarding this issue that include video of the removal of the passengers, and accounts from other passengers.  United Airlines has stated that, after working to accommodate Dr. Beegle and her family, they decided to divert the flight because of safety concerns.

Dr. Beegle states in her account of the incident that her daughter had refused her pre-flight dinner, is a picky eater, they had snacks for her, and she’s an experienced traveler.  Noticing the signs that her daughter was going to be upset about being hungry, she asked for a chicken sandwich for her, but it wasn’t hot so she wanted a meal from First-Class, and the flight attendant said they couldn’t make an exception even though Dr. Beegle stated that her daughter is in the spectrum; Dr. Beegle then proceeded to say that perhaps they would help when her daughter started having a meltdown and scratching…  She got her hot meal, and wasn’t charged for it.

Why Dr. Beegle was surprised when the plane was diverted and she and her family were then escorted off it is beyond me.  She made, after all, a veiled threat of violence.  When a parent of a child in the spectrum says there could be a meltdown or scratching, they’re basically saying “shit is going to hit the fan, and it’s on you.”

Interestingly enough, Donna Beegle “is a highly experienced National public speaker, discussion leader, trainer,” and “has worked and written articles providing insights and strategies for communicating more effectively across race, class, gender and generational barriers for 17 years.”  Apparently, all these credentials flew out the window when it came to dealing with this situation.

Mind you, I don’t want to be catty, but…as the parents of a very autistic J I can tell you that we’ve been there and done that with the picky-eating, meltdowns, and so on and so forth.  A) You don’t announce that your child is a potentially-aggressive (either to him/herself or to others); B) you pack, pack, pack for every contingency, C) you are the one with the child in the spectrum, so YOU have to anticipate and prepare.

And then I come to my main argument: Juliette Beegle is described by her mother as having a high IQ, but has difficulties communicating.  Dr. Beegle is supposedly an expert in communication, and she failed -utterly and completely- in being her daughter’s voice in a positive and productive manner.  Instead of making arrangements with the airline prior to the flight, Dr. Beegle waited to be on the plane.  “Oh, but she didn’t have time!”  There’s always time.  Even if you have to alter your plans, step away from your dinner and walk up to the airline counter, there’s always time.  If the priority and the focus is your special needs child, you MAKE the time, and you put in the effort.

There’s one very simple thing I’ve learned from parenting J: any potentially difficult situations or discussion MUST take place where he can’t perceive them.  We are responsible for teaching J to navigate the world, and that his needs are outside the norm, but HE will have to adjust  as much as other people adjust to him.   In this day and age, an airplane full of passengers is not the place to say “when my child starts having a meltdown and starts scratching.”  It just isn’t the right way to approach the situation.  Dr. Beegle got what she wanted for her daughter, but her method was faulty.  You cannot cry wolf and then not expect the farmer to come out with a shotgun.

The worst part of this is that Dr. Beegle’s argument, when telling her story to the news, is that she says things like “If they had autism training when I explained to him when I needed something hot, we could have found a workable solution together.  But his whole view was, ‘I’m trained to give a first class meal.’ He didn’t understand at all. He was disrespectful, he was rude.”  She claims that she realized they were being asked to leave the plane “because of the fear of autism.”

Dr. Beegle doesn’t realize that she, with her behavior and attitude, has increased this fear.  Granted, people are not running down the street screaming in fear, but we now have countless incidents of individuals citing “autism” as a reason for some sort of mistreatment, discrimination, or shocking behavior on the part of a vendor or service provider.  Dr. Beegle, instead of anticipating her daughter’s needs once she didn’t eat her dinner, decided to wait to get on the plane and expect the rules to be bent to accommodate her child.

Yes, we all hope that compassion will take the day.  We all hope that a little more enlightenment and understanding is achieved in regards to our children’s special needs.  We all wish others could understand the shoes, even if they can’t quite grasp the road we tread while wearing them.  We want to help others know a little more, understand a little more, empathize a little more.  That doesn’t mean we are entitled to force knowledge, understanding and empathy on others.

I know about a child in the spectrum with communication issues.  I know about a child with behavior issues.  I remember the days when the bulk of our time was consumed with trying to help J figure out the best way to tell us something so he wouldn’t have a meltdown.  I know about the overwhelmingly depressing decision to put your up-until-then medication-free child on Risperdal.  My kid LOOKED like he wanted to (and could!) hurt people because he carried boxing gloves and wore a scrum cap.  I understand the frustration, the desire to protect and accommodate, the fear of causing a scene in public, and of being judged because of an extraordinary circumstance.  Her daughter’s IQ is higher than J’s (his diagnosis, after all, is Autism and Moderate Mental Retardation,) and I’m sure that an iPad with Proloquo2Go would be a stellar alternative for them.

I know this is probably a mean slant to take on this story, but I can’t help but think Dr. Beegle could have handled it much better than she did, and that -given her credentials- she did her daughter a disservice.  You use your strengths to help your child, and Dr. Beegle, communicator extraordinaire, failed in this purpose.  I empathize with her desire to accommodate her child and see the world doing the same thing, but this is not the way to do it.  The problem here isn’t “fear of autism.”  The problem here isn’t autism at all.  Autism was used as the reason for a potential threat to the safety of a passenger, and even if that passenger was Dr. Beegle’s daughter the pilot and crew were responsible for Ms. Beegle’s well-being.

Dr. Beegle needs to understand that she escalated the situation, and that the airline was -ultimately- looking out for her and her family, too.  She was provided the meal she requested after stating that her daughter was a potential threat to safety.  I can totally understand why the flight attendants  were concerned.  I would have been concerned, too.  As parents of individuals in the spectrum, we cannot (and should not) expect that our children’s needs will always be met in the way we want them to be met, and at the time we want them to be met.  Our main mission should be to make sure that our children have what they need to navigate the world more adeptly, more effectively, but not at the expense of other people’s rights, needs and safety.  This situation, or at least the magnitude of it, could have been prevented, or controlled.

Autism should be in the news to raise awareness, and in this particular instance the awareness that is being raised is that our children might just disrupt flights, pose threats to others…  That is not the way to do it.  We don’t need THAT kind of attention.

After what has felt like a long gestation period, consilium habemus in posterum

The end of the current school year is approaching rather fast.  That means, my friends, that the beginning of J’s last full school year is approaching only ever so slightly more slowly.  As often happens in life, the moment for plans to be set in motion is often immediately after one has come up (after much pushing and shoving, many doses of Tylenol, and many instances of “wait!  wait!  I’ve GOT it!” that fizzle because of the impractical nature of “it”) with the right plan.  I will not tell you, because I cannot guarantee in any way, shape, or form that this is “the right plan,” that this will work, but it’s a start…

Normandy wasn’t invaded in a day.  Well, technically, kinda sorta, but not…to get to the shores of Normandy a lot of planning had to happen, and with planning came training, and with training came a lot of other things.  That’s where we’re at now, and it’s a good (could be better) place.  After a massive panic attack, a depressing flipping of pages on my calendar, and a reckoning of the inevitability of the passage of time, I sat down and did some organized thinking.  It followed a massive brainstorming session with myself, and I shot myself down several times over until I talked myself into one basic notion: J doesn’t need to MAKE money, and he probably WON’T, but what he needs is an occupation that makes him happy and gives him purpose.

A loud, dramatic, exhausting sigh followed this moment of illumination.  After that, things got easier…sort of…kind of…a little bit.

My desk is, as I type this, covered with publications related to the arts and crafts endeavors that my son enjoys.  The TV room closet (also known as the “J Closet”) is full of materials we’ve been ordering based on these publications.  Several books have arrived and are being studied by the person(s) in charge of each particular discipline within the Arts and Crafts field.  Post-Its, notes, scribblings, and so on and so forth are marking our progress, and we have laid out a simple (complex) process for setting everything in motion for J to be self-employed and poor once school is out.

Have no worries: his needs will be met, and he will be comfortable and productive, but the objective of this game is not to make him the next poster boy for “individuals in the spectrum can be the CEOs of their own multi-million dollar companies.”  No, the purpose we have in mind is that J will feel that every day of his life has an occupation in which he can engage, and that there are work hours during which he can generate some output that will be seen/purchased/owned/perhaps appreciated by others, and leisure hours during which he -like the rest of us- can kick back and say “what a long day I had!!!!”

Over the course of the next six months, J will slowly learn -among other things- streamlined  versions of the processes of block stamping on paper and fabric, screen printing, soap manufacturing, working on ceramics, polymer clay, and glass.  Using the techniques we’ll be teaching him, J will run his own little business from home.  On Saturdays during summer he can go to Farmers’ Market, and he can have his own little Etsy store.  He will not make money, but he will be able to create small batches of artisanal soaps, limited edition post cards and t-shirts, and so on and so forth.

His workshop will be in our garage, and there he has his music, heating for the cold winter months, circulating air in the summer heat, easy access to a bathroom, and constant supervision if he wants him, privacy if he prefers it.  A clock will be installed to let him know when work starts and ends, and breaks and lunch hours will be respected.

For a young adult who has been wait-listed for services in a state where services for adults with disabilities seem to be undergoing major reduction and revision, it’s as good a plan as we can come up with, and we’re hoping that our brainstorming, planning, studying (yes, people here are actually studying and working on making things easier to manage for J,) and implementing will suffice for the time being.  J looks at us as if we’ve lost our minds, but every package and book that arrives piques his curiosity.  Whatever skepticism he feels is understandable, and we respect it…

In other news, TGG might be going back to school soon.  We all have our fingers crossed for him.  Turning 24 is often a trigger for realizing childhood is long gone, and youth has a limited duration. Like that moment when you realize you’re not going to lose those last five (ten…fifteen…twenty?) pounds, realizing that you graduated from high school six years ago is something you either dread or embrace.  TGG has chosen to embrace it and move forward.

As for J…he is slowly losing whatever weight had stalled during winter.  Those 36-inch waist pants are not too far off in the future, and we managed to talk him out of wearing his snow boots until the end of May.  He is almost ready to transition to shorts, but he’s being discreet for the time being.

There you have it.  The silence has been gestation, not lack of interest.  Once in a while one has to gather up one’s thoughts and let them mill about without bouncing them off walls and people.

Thoughts?  Opinions?  Suggestions?  We are entering the “learn and do a trial run” period of this new endeavor so I will have lots to tell you, and -hopefully- some of it will be positive in spite of the comedy that is bound to ensue when you have people trying to re-learn and teach these things to others.

Wish us luck…

P.S.: I don’t know Latin so I did my best…and if I botched/butchered/obliterated/destroyed it…a thousand apologies…