Archive for Bound & Determined

The Thin Red Bottom Line

autism Man_and_dollar_crack_01Numbers.

Numbers are what is going to make this all happen. You can draw pictures and talk up a storm and imagine and research and take meetings, but where it gets really real is staring at the column of figures running down to that bottom line.  All the statistics and head counts and years don’t mean jack in the end because “numbers” means money.

Plain and Simple.

You need money to make anything happen.  Money makes the world go round.  Numbers point you straight toward the truth, and the truth is that the numbers say nobody trying to do what we’re trying to do has enough money.

I’ve spent the past two weeks getting some preliminary numbers together.  I had a meeting with a company that runs group homes.  They were a wealth (pardon the pun) of information.  I learned that they will provide the staff, the training and handle just about everything related to that for you.  That led to my first concrete number regarding the cost of staffing a group home.  I am hoping it was wrong.  I’m sure it’s not.  Are you ready?

It will cost over $200K just to staff the home for 5 people.  Per year.

That’s the first aggregate number in the Expense column.

Additional costs will include:

1.  The purchase of a house (either downpayment and mortgage, or full purchase price)

2.  Renovations to bring the house up to code

3.  Refitting to create an autism appropriate and friendly environment

4.  Insurance, all kinds

5.  Maintenance

6.  Utilities

7.  Furnishings

8.  Security System

None of this includes daily living expenses such as clothing, food, medical care, transportation, and entertainment.

The preliminary expense column is now at more than $300K not including initial startup costs for the foundation (so we can do several houses) and the mortgage.  Divide that by 5 residents and it’s at a minimum of $60K per year.

Meanwhile, over in the income column…an adult with autism will get just over $700 a month in SSI benefits.  Even if you flunked math on your way to the top, you’ll sense that this just doesn’t add up.

All of this calculating will eventually be going into a business plan.  A business plan with a big hole in the middle at the moment.

The only way to make this work is to raise the money.  Every single year.   Now…how to raise that kind of money???

I have a few ideas but I’m open to suggestions.

 

In The Beginning

SayNoI had two meetings last week.  One was with a team that provides housing and care in the Orlando area to people with developmental disabilities through a variety of facilities.   The other meeting was with a person deeply dedicated to education and support for special needs children, with ties to the academic, the PR and the financial worlds.

This was not a typical week in Kathleenland.  Less carpool and more business plans. As I sat in the Mexican restaurant that night, hoarding my own personal salsa bowl, eyeing the waiter for another margarita and listening to publicity this, architecture that, and employment what, I found myself wondering what happened.  How did I get here?

How did all of this start?

Well, I’ll start with what I know:  I know I am not good at taking “No” for an answer.  (Just ask my poor mother.) This character trait has served me well most of my life.  It has gotten me out of situations and into places before.  I”m pleased to say there are no arrest records or embarrassing tattoos so far, and I’ve gotten into lots of places for free.

Of course, autism doesn’t take “No” for an answer either.  And this has set the ground for the ongoing major conflict of my life.  The Irresistible Condition meets the Immovable Mother.  Cue John Williams soundtrack.  When people talk about “The Face of Autism,” they generally mean charming examples of children, and the images of dedicated parents and teachers leading the way…all things that just makes you want to say “Yes!”  What they don’t think about is “The OTHER Face of Autism” which involves insurance companies and state and federal agencies and physician offices and a whole lot of organizations whose reflex response is usually “No.”

So a genetic inability to take “No” for an answer has helped immensely over the years in getting what CJ needs.  I found out very quickly that entitlement was a very small part of the picture.  Oh, services existed, but you were not guaranteed them, tax dollars paid or need notwithstanding.  And once you called or applied, you would quickly and easily become a number in a pile, competing with thousands of other numbers for attention of someone’s desk.  I also realized that there was more than one way to be told “No.”  I didn’t need a person on the phone saying it in my ear.  Just the days and weeks and months of waiting in the silence with no reply was a kind of “No” too.

Did I mention I don’t do “No” well?

The squeaky wheel does get the grease.  Everyone knows that.  It’s true.  I learned to squeak.  But I found out that the kind of grease was just as important as the squeaking.  I learned to grease nicely.  Politely.  Relentlessly.  My grease is now a fine mix of “thank you so much” and “I know that when you understand everything I’m about to tell you, everything will get straightened out because you’re the wonderful, thoughtful, compassionate person who is going to help me solve this problem,” and “Of course, and I will call you tomorrow to follow up.  And the next day.  And the next.”   It’s a delicate operation.   Too much grease and you present as a harassing stalker and you drop to the bottom of the pile.  Not enough grease and you just plain don’t move.

I also realized that insurance companies wouldn’t pay for therapies.  If there were things your child needed, you had to figure out how to pay for them yourself.  I knew a few people who did have money or had family with money and they sailed through.  Most people, however, were flying by the seat of their pants.  I met one woman who was cleaning out her carefully planned retirement accounts one by one as her child grew.  I met other people who were setting up “home programs” (insert “desperately attempting to do as much as home as they could”).

And through it all, I kept thinking that if I had money, a lot of money, I would set up a foundation that helped people with the these costs.  When something like this becomes your “lottery dream” instead of a vacation house in Aruba, you know things have begun to change in your life.  The whole “Foundation” thing has stayed with me.  It changes based on our needs and the needs of people I know.  As schools open, I think how nice it would be to fund tuition for the kids who need it.  I keep dreaming and “the Foundation” is always there in the back of my mind.

A few years ago, I had a mother tell me that there was no housing for adults with autism.  Well, I just knew she was confused, as I had talked to “my” people about services and what the future would look like.  They had explained to me how it would work when he was an adult.

The problem here was that this mother was a good friend…someone who knew what she was talking about.  The snake had entered my garden.

I did some checking.  And yes…there WAS housing.  Yes, CJ was eligible when he turned 18, or even younger in a crisis situation.  However…there was no “available” housing.

NONE.

My friend told me that she and her husband were considering buying a home themselves.  They had even looked into using their current home to house their adult child and moving themselves into something smaller.  Wow.  Now my ears were open.  Not long after that, another mom told me that she was thinking about trying to get some parents together to buy a house and try to staff it or “co-op” it.  OK.  Now, someone is trying to tell me something.

CJ was about 16 at this time.  Their kids were older, and I had a few years…no big hurry.  But…I have learned over the years to “be prepared” (I was a Girl Scout, after all).  So, I started talking to people and getting information.

Are there homes? Is there housing?  Yes.  Is there a wait list for these?  Oh, yes.  Years worth.  And is there housing that I would be okay with CJ living in?  Housing within reasonable driving distance?  Housing that would let CJ live at the top of his range of abilities?  Housing that would foster the need for friends and reasonable socialization, taking into account the limits that autism puts on how he can be social?  Is there housing where CJ could be happy?  Housing that could be a real home and not just an institution?

Maybe not so much.

About six months ago, I got a call from Judy Owen, an old high school friend.  She blogs for Forbes at www.forbes.com/sites/judyowen/, which is really cool.  Even more cool,  Judy started an employment agency in St. Pete, Florida for persons with developmental disabilities.  Opportunity Works (www.opportunity-works.com).  Check it out.

Judy had called to ask me to be her “plus 1” at a benefit for the Able Trust.  It sounded great!  Let me make it happen!  I ran home and Googled it.  $1100 for a table at this benefit, with a silent auction.  And me with nothing to wear.

But…I made it happen.  And before I knew it, I was at the Orlando Museum of Art.  Very nice.  I don’t get out much (shopping at WalMart does NOT count), so it was extra fun for me.  I figured I’d go along, stare at the dresses and drink the wine and just have a pleasant evening. I mean, I kind of know the drill with this sort of thing.  Fish out of water I might be, but shy, I am not.  I introduced myself to everyone.  And of course, they always asked “So what do you do?” And when I said that I stay home to care for my son who is autistic, usually the “shield of politeness” comes up.  It’s invisible, but unmistakable when it is raised. People are always nice, but once they realize my life is out of their range and I have nothing to add to their ambitions, they look to move on.

Not tonight.

People would turn to me, they would lean in and show more interest.  They would ask me questions. They cared about my answers. They wanted information from me.  Strangely, I seemed to have information they wanted.  I had to think of answers as no one had asked me some of these questions before.

One man asked my favorite question.  “What are your son’s goals for the next 5 years?”   I actually laughed.  I said that his goal in life was to sit in front of the TV, eat chips and “rewind, play, rewind, play”.  The guy laughed and said, “Isn’t that every man’s goal?”  Funny, but he was serious, though.  They all were.  What were our needs?  What were they doing or not doing that would affect us or someone like us?  Each of them in turn introduced me to others that they knew.  My head was spinning.  I hadn’t brought a notebook to record all of this.  I couldn’t even keep them all straight.

I met the new dean of the Marino College opening in Ft. Lauderdale.  I met people with Project TEN who help with post-secondary training.  I met people with the Able Trust.  And about 10 others that I can’t remember because Judy didn’t tell me I’d need to take notes in between drinks.

The most interesting conversation I had was with the man from the Agency for Persons with Disabilities in Florida.  He went out of his way to talk to me for a long time.  He explained that nothing is going to change in FL with APD.  From talking to people in other states, it appears that the only changes that are happening anywhere are negative.  There wasn’t any kind of program or plan on the horizon that acknowledged that half a million adults with autism are on their way to Housing Nowhere.  He told me that what I needed to do was to get with some other parents and find a house, apartment or condo to rent.  He suggested we staff it with college students, as typical care workers tend to be unreliable.  (Now THAT I knew…although it’s sobering that college students, who are allowed to be transient because hey! it’s college!…they are considered more reliable that the average care worker.)  He was confirming I was on the right track with doing it myself, and sadly, there was no silver platter or lottery coming my way.

But there still was this Foundation thing….

Later, I got with Judy to try to sort out who was who.  I actually made a list and typed up notes.  Lists lead to more lists.  Ideas started leading to other ideas.  And people to people.  All of a sudden, this wasn’t just a pipe dream.  All of the sudden, this idea of mine wasn’t just in my head.  It was bigger than I thought.  It was bigger than me.  All of a sudden, it was real.

Six months feels like a long time ago. I’m way ahead of where I was, and I’ve gotten repeated confirmation that I’m on the right track.

A house for CJ is going to happen.

Screw Loose

multipurpose tool

Feels like forever since I last posted.  It’s that time of year.

So, what’s been going on?  Well, we had an IEP meeting at the end of the school year.  I finished and mailed off the paperwork for the application to become CJ’s Guardian Advocate. And I dealt with the yearly renewal for benefits through the State of Florida’s Agency for Persons with Disabilitites (APD).

This year we had to provide additional documentation.  Things got interesting.  We had cashed in some savings bonds I found in a file drawer that were in CJ’s name.  He cannot have more than a certain amount of money in his name by the time he turns 18, as that would screw up the Guardianship application, so I knew they needed to be cashed in ASAP.

Of course, we all know that when you loosen a screw in one location, the universe is obligated to tighten a screw somewhere else.  It’s a cosmic law or something.  So APD now had to make sure that CJ didn’t have too much money.  Fair enough.  However, they had to make sure he didn’t have too much money RIGHT NOW…as in, right away, as in within days.

Tick tick tick tick.

My favorite part of dealing with them is the math. The letter they sent was dated 5/22. The letter stated that if I did not get the requested information to them by 6/3, his benefits would be cut off. (Oh, they will do it, too.)  I received the letter on 5/25. Naturally, it was a holiday weekend.  The soonest I could do anything was 5/28.

I ran around calling places, calling people, holding the line and then holding some more.  Calling APD, calling the bank.  Since my husband is the parent listed on CJ’s account, Chris had to run down to the bank on his lunch hour to sign mysterious paperwork and then he had to fax everything to APD the next day.  We got it all faxed on 5/30.  By 6/3, I had nearly recovered from the experience.  We can now officially say that CJ does NOT have too much money to do anything more than buy Air Bud DVD’s on sale.

Then we went on vacation.

Next week, I have a meeting scheduled with a company that runs group homes for people with varying needs, several of which are owned by foundations.  I am searching the community for people who are already doing what I’m planning on doing, even if their end goal is different than mine.  I am currently working on a very long list of questions, as I still have a lot to learn.  After this meeting, I expect to be a lot closer to launch date for CJ’s House.

It seems that no matter how much I get done, my “to do” list just gets longer.  There is a light at the end of the tunnel.  There’s no train, but it just seems that the hurdles are getting more and more visible.

See you at the next jump.

Signing on the Dotted Line

Sign on the dotted lineWell, I finally did it.  “It” is in the mail.

I sent off all the guardianship paperwork to the attorney.  I sent the applications for my husband and I to be approved as guardians of our own child.  (I was thinking that 18 years of parenting would qualify us, but I understand why they have to be careful)  I also sent the applications for my mother and sister to be successor guardians.  I sent a letter from his doctor saying that he was disabled and would be for life.  The diagnosis was there in black and white.  It was a little hard to look at, as this time, it is for eternity.

My sister, who is still in the most denial about CJ’s condition, says that in her head she keeps thinking, hoping, dreaming that he will just wake up one day and be typical.

Meanwhile….

I also sent a copy of his IEP and his paperwork from the state showing that he receives services.  All of this along with a big check.

I put it in the mail.  It’s done.  Now, the waiting begins.

I applied for Social Security Disability on CJ’s behalf as well, and sent the SSA the paperwork at the same time.  I think I thought it would make me feel better somehow to make him permanently disabled in writing all at once on the same day.  I’m not sure how that’s working for me, so far….

As I sit now, dealing with the State of Florida’s APD (Agency for Persons with Disabilities) about his services and our insurance company about his medications, I am realizing that this is never going to go away.

A friend of mine recently posted on Facebook that when her son turned 18, something was said about being all being together forever and planning for retirement for three and not just two.  It was said in jest and it was funny, but it was so so true at the same time.

We are truly entering a new and unchartered chapter in our lives.  I don’t wanna go.  Can we send Captain Kirk instead?  Mr. Spock would be really useful right now!!

Autism Aging Out: Some Facts to Consider

Autism Living at HomeHere are a few ideas to chew on, after the kids are in bed and American Idol is done for the night:

Autism is a lifelong neurobiological condition.

A 2003 study showed that people with mild/moderate intellectual/developmental impairment live as long as the general population.

By 2020, there will be 4 million Americans with autism.

85% of Americans with autism, right now, are under the age of 21.

All of these children will be adults with autism within 15 years.

By 2020, 500,000 children diagnosed with autism will be adults.

79% of adults with autism live with parents, older relatives or a guardian.

25% of these primary caregivers are over the age of 60.

Right now, with only a few exceptions, the most likely housing scenario for an autistic adult is life in the family home until one or both parents die, followed by life in an institution.

We can do better than this.

The IEP – Lifeline and Funeral

Autism IEP MeetingThe IEP.  It’s a term that will make most people scratch their head.  Is it a rock band?  Another awful group dance like the Macarena?  A new car in the Ford lineup?  No, it’s an “Individual Education Plan” and is the only legally sanctioned torture device designed especially for use on parents.

You never, ever, ever forget your first time.  CJ was getting ready to start kindergarten.  He had been in a PreK class for “varying exceptionalities,” which is a fancy way of saying “really different and we have a bad feeling.”  I, the parent, receive paperwork in the mail.  A meeting has been scheduled on the matter of CJ Williams.  I’m not sure if it’s an invitation or a royal summons.  Still…it’s all about helping CJ find the right combination of people and environment so that he can learn, right?  Maybe it’ll sort of be like being called to the principal’s office, except no one’s done anything wrong…exactly.  We’ll have a nice discussion and sort things out.

So I dutifully took time off of work to show up for the meeting at the school.  I’m welcomed and escorted to a conference room.  Inside, there is a social worker, a guidance counselor, the ESE teacher, a regular teacher, a speech therapist, an occupational therapist, a staffing specialist and several others.  Me and 7 to 10 other people (I can’t remember exactly, sort of like you don’t remember exactly how many cannons are firing at you as you leave your foxhole trench).   They are kind.  They are professional.  They don’t know you.  Some have children.  Some don’t.  They have done this many times before.  They go around the room, and one by one, these nice caring people tell you in no uncertain terms how they have tested your child and compiled a list of everything he “can’t” do.  He can’t do X.  He can’t do Y.  Every “can’t” is the sound of a door slamming shut.  A body blow.  Now I know how the woman being stoned at the gates of village felt (emotionally speaking, of course).

The early meetings are always the biggies, too.  Everything is still completely new.  You walk into a meeting with a rough idea of how your world works and what your hopes for the future of your child are, and you leave with something else.  The amount of mental and emotional processing that goes on in the head of parent after an IEP meeting, if harnessed, could power a city block for a week.  Theoretically, they are throwing you a lifeline, but it feels like a funeral.  After the shock wears off, you cry, you flail, you rage, you curl up, you reject, you bargain, you pray.  What the hell do these people know?  They’re just guessing, every child is different.  Where’s the door?  Where’s the window?  Where’s the way out of this new reality?  How do I even begin to tell anyone this?  How do I go about inflicting this on anyone else who loves CJ?  Who am I kidding?  These people have experience.  They know what they are seeing.  It’s 10 of them and 1 of me.  What do I know?  God, how am I going to make this work?  God, help me.

This is how it goes.

As you get more experienced at this, you begin to build a shell.  You realize that there are easy meetings where there are no conflicts, no new “can’ts,” few people and you are done quickly.  Then there are the hard meetings.  Often, there’s a conflict even before you walk into the room.  You go in wanting something they don’t want to give, or rejecting something they insist is right and necessary.  There are several ways to feel like a jerk here.  You can be a jerk by refusing their wise counsel, experience and advice, or you can be a jerk by demanding something your child needs that might inconvenience the team, make the days awkward, or consume resources they want applied elsewhere.  It took me a while to start believing that my expertise as CJ’s mom, my common sense, powers of observation and time-in-grade in the trenches of daily life were a skill set just as valid as having a Ph.D or 20 years of educator experience.  It took me a while to learn to both respect the team’s skills and my own equally.

Because, see…the first thing no one tells you is that you are actually a member of the team.  (If you are a parent and you’ve read this far, I can’t stress enough…if you take only one thing away from this blog, make it this.)  The other team members can’t just do whatever they want. You have a vote.  You can make requests.  You can veto things.  They can’t just decide to take things away.  While you can’t control the show, you do have leverage, and in a room where it’s a ratio of 8:1 or higher, you need to learn how to use it.

There are what I like to call “Red Siren Words”.  These words are your leverage.  They have power.  They  set off sirens in heads of the professional people in the room during an IEP.  Use them and everyone tends to sit up and get VERY nervous (think “lawsuit” here).  These RSW’s are precise phrases which cue everyone to the codified requirements that schools and teams are required to comply with in the best interests of your child.  Without them, the team is left fairly free to craft a plan to fit their own agenda, be it your child’s best interest, the school budget, or someone’s sabbatical plans.  But use an RSW and instantly everyone in the room understands that a set of expectations has been invoked, that the parent is aware that he or she has the right to expect certain things, and that consequences could result from ignoring this.

Let’s try a few.

“Least restrictive environment.”  This means that the school is required to keep your child with typical kids for as much of the day as possible.  If you are fighting to find a place for all those painfully learned life or social skills to take root and be exercised, rather than have your child restricted to a single room with limited exposure to a neurotypical environment, you might want to trot this phrase out.

“Where’s the data?  Show me the data.”   If you are proposing to make a change in my child’s IEP (usually regarding services they are proposing to stop), I am going to politely demand the data to back up your proposal.   Use this RSW to force the distinction between supported facts about your child vs their educated opinion.

Of course, the down side is that it then becomes adversarial; you against however many other people are in the room.  It’s a lovely feeling.  If you are naturally assertive, you may have to rein yourself in.  If you’re a conflict avoider, you may need to plan to throw up in the bushes outside the school afterwards.  I’ve been lucky.  Most of the time, I’ve worked things out.  But not everyone has been as fortunate as we were.  I know more people who have taken advocates or even attorneys to the meetings with them than people who have not.

All that said, you do have a voice, but you don’t have complete control.  CJ is now 17.  We had our latest meeting last week.  It was one of those meetings where everyone had to come.  We were changing a service…taking away CJ’s occupational therapy.  UGH.  Luckily, I knew most of them and we were all in the know ahead of time.  We all knew each other and knew the drill.  (I did wonder what they would say if I suddenly decided to pitch a fit in the middle of the meeting about taking away CJ’s OT.­­) We go through the meeting and get to the part about removing OT, and they say, “So you agree with this?”  I say, “No.”  Dead silence.  I then say that I don’t agree, but I guess it doesn’t really matter.  I say that I wish that they would continue and it would make a difference, but I don’t really have a choice.  (I did have a choice and could have made a scene, but it wouldn’t make a difference and wouldn’t really fix anything.)

I did remind them of what we are all told.  I reminded them about the “If Onlys.”  If only…if only we had done more therapy…if only we had done different therapy…if only we had tried this diet or that diet…if only, if only, if only.  Whenever you stop a therapy, you re-introduce the “If Onlys.”

But really…If only…If only what??  He would be better?  He would be cured?  They all kind of looked at me and nodded.  I realize almost every time I am in one of these meetings that they forget.  They are these wonderful people doing their jobs and this is our child.  They are telling you all the ways they are “helping.”  But all you can hear is all the things your child can’t do and how your child doesn’t and may never measure up.

When you recover from feeling like you were kicked when you were down, you wonder why they don’t serve drinks at these things.  Really.

I actually said it out loud this time.  They all thought it was a good idea.

Terra Incognita

Autism Guardianship HousingI finally made it to the attorney’s office.  You know those snakes that grab and try to swallow an antelope or a crocodile, and they get stuck trying to swallow it down?  You can see it in their expression:  “Maybe this wasn’t such a great idea…,” but there’s no turning back now.

That was me on a sunny afternoon.

You know what they say:  Bite off more than you can chew.  Then chew.

Guardian Angel?

Autism Mama Bear Have you ever had the feeling that your head was going to explode?  Remember that feeling in school when so much information was being crammed in at such a fast rate and you never had enough time to process it all?  It all begins so innocently.  You have a question.  You ask the question.  You get an answer.  While processing the answer, it creates the need to ask another question, and then to evaluate and process more information as things grow transform and then more questions abound.  Before you know it, you’re eating the cupcakes that were supposed to go in your daughter’s lunch tomorrow and re-watching reruns of Downton Abbey to make the noise in your head just stop.

Today, I asked a question.  Today it all began. Today, I met with an attorney.

There was nothing I didn’t already know.  I like to answer my own questions beforehand, and then compare them to the answers I get from everyone else.  It’s what I do.  If I do it right, there are no surprises.  No big announcements.  It is what it is.  And I get to be right (I love that).

So there it all was…the next steps for us in relation to CJ.  It was all laid out in black and white.  A process.  Specific steps.  The good part — it was all laid out in black and white and it was all very clear.  The bad part — it was all laid out in black and white and all just too real.

CJ is going to turn 18.  And he can’t just do that with a cake and candles and the keys to a new car.  CJ can’t be 18 without us.  The Joan Crawford Institute for the Prevention of Dreadful Parenting says so.  I know.  I checked online.

CJ needs a Guardian.  And apparently, it can’t be us.  And it can’t be just any Guardian.  It has to be a Guardian Advocate.  Okay.

Now…I have a question.  Remember the exploding head?

Who is going to succeed us a Guardian Advocate?  Who is going to do what?  What on earth is the difference between a Guardian Advocate and a Guardian?  The attorney says to me “Guardian Advocate.  ‘GA.’  Think Guardian Angel.”  Helpful.  My normal snappy come back failed me in this moment.  My brain really must have been full at the moment because I just couldn’t come up with anything obnoxious to go with GA. And I really needed to.  (I am guessing that was God’s grace that I didn’t,  so that this guy didn’t think I was a complete lunatic, because I really really need him to confirm what I already know…and I’m still working on my own answer, BTW…I’ll let you know.)

So paperwork and some more paperwork.  Cost is just not even an issue here.  Get it done and get it done RIGHT!  Mistakes can cost you at this point.  (Scary)  Even worse, mistakes can harm your child. (See JCI for Dreadful Parenting, above)  Back to the whole Guardian Angel thing.  Someone else is going to do this instead of me??  You know how they tell you you shouldn’t mess with a Mama Bear….well, don’t even think about messing with a mother of a special needs child!  (There are always snarky postcard things on Facebook about special needs moms…their outlook and attitudes.  They never, ever fail to crack me up, because they are so true.)

The attorney made an interesting comment to me.  “You can read a book about being a parent of an autistic child, but there is no way you will ever understand unless you are one.”  That is true about so many, many things.  There are tons of jokes, funny stories, sad stories, tragic stories, information and events that will just break your heart.  I always say that I can laugh or I can cry.  Sometimes, I just scream.

But today, I exploded.

Tangled Up In Knots

Autism tying shoesFor years we have tried to teach CJ to tie his own shoes.  Therapists have “protocols” with step by step instructions to learn almost anything.  I had no idea that there were so many steps to everyday activities that I do by rote.  I don’t even remember learning most of these things.  I am fairly sure after watching my daughter that you don’t ever “learn” per se, you just know when you are the right age.

Tying someone else’s shoes for 17 years is tiring.  It was nice when my daughter learned to tie shoes.  I could make her tie his shoes.  She is much closer to the ground, after all.  I said in passing something about him not being able to tie shoes.  One of the women asked why I didn’t get him the elastic laces that triathletes wear.  WHAT!!!???!!???  Apparently, athletes use these elastic laces that have to be purchased at a sporting goods store.  They are elastic cording with plastic clips.  The clips move to hold the laces at the appropriate tension for the wearer.  When I went on line, it said “perfect for the elderly and persons with special needs”.  OK.  Why does no one I know with special needs kids know about this, then????

I bought them and put them on his shoes.  He can now put on his own shoes and they stay on.  OMG!  I never knew that the quality of my life would improve with the purchase of a pair of shoe laces.