Archive for May 31, 2013

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.


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!!

The CJ Factor

autism - slimeFurniture shopping. In a typical “typical” household, it’s an idea that would usually put a smile on the mom’s face and make the dad groan out loud.

Furniture shopping! What does it make you think of? New colors? New style? New material? So many possibilities! Of course, you also need to consider how the furniture is going to be used, especially if you have kids and/or animals. Will it be lightly used in a more formal area? Or can it expect crumbs and crayons and cat hair with a bit of Wii and Playstation wear and tear?

No matter what you decide, you’ve earned it, right? A solid five to ten years of family use has worn out your current sofa, and a bit of redecorating has left your choice from 2001 looking a bit outdated as well as reasonably used. It’s time to go shopping and do it all again. Right?

Not in our house. Not any more. When you share your living space with a 200 lb 17-year-old autistic boy, your criteria change.

We shop for furniture that can withstand “The CJ Factor.” This includes function, durability, and the “Flop Factor.” And then there’s the matter of slime.

According to, “slime” is defined as:

1. thin, glutinous mud.
2. any ropy or viscous liquid matter, especially of a foul kind.
3. a viscous secretion of animal or vegetable origin.

Bingo! I can tell you that in our house, slime is usually all that, plus food and unwashed hands. It can coat furniture, appliances, TV remotes, iPads, bathroom tile, door handles, dashboards, bedsheets, computer keyboards, toys, books, window blinds, refrigerator handles, little sisters and the cat. Slime occupies me at some point every day. In our house, slime (and its removal) is a big, big deal.


Our first furniture shopping trip

Salesperson: Now, over here, we have a large, comfortable leather sofa that seats four, with solid wood frame construction and a lifetime guarantee on all parts. It’s available at a low, low price of only six mortgage payments.

Chris: What did we decide about this, Kathleen? Are we going for the expensive furniture that will stand up to the “CJ Factor?” Or do we go less expensive and plan a trip to the dump in one or two years?

Salesperson: The…CJ Factor??

Kathleen: How well will this upholstery stand up to slime?

Salesperson: *……*

Kathleen: Is slime damage included in the guarantee?


We elected to get the cheaper version. We figured we’d get maybe 3 good years out of it. It stood up to the CJ-created slime pretty well. We soldiered on.

Did you know that the springs inside a couch can actually come out? Seriously, one day about a year later, I was looking at the couch and there was something sticking out from underneath it. A piece of metal. A spring. UGH! Next thing I knew, there were more. We were now at the point where the “new” couch was slimed, the seat cushions were drooping (there are no springs left, after all), and there’s no place to sit. This makes it interesting when you have people over. I just make everyone sit in the kitchen with me.

We realized we’d accounted for slime but forgotten to really think about “The Flop” factor.
The Flop: The Flop is when your 200 lb son just “flops” onto the furniture with all his dead weight. As in, stand next to the unsuspecting furniture, suddenly flip your body sideways and land like a log falling from a height of four feet. Again. And again. And again.

I have heard furniture scream.

Last year, we decided to have Thanksgiving at our house. Picture a total of 12 people in 1350 square feet of space. (My ideas are always bigger than my house). We can’t ask our guests to sit on bare springs. So my husband insists we buy couches. We decide on quality this time, with a lifetime warranty. “What,” we ask, “about the slime factor”? “What about the flop factor?” We are assured over and over that our mortgage-busting selections are guaranteed. Warily, we proceed through the showroom to the order desk.

Then it hits us. A CHAIR! A chair? Yes! We get him his own chair! We get him a well-built, flop-resistant, slime-resistant recliner chair…a chair that no one else is allowed to sit in. In return, he is not allowed to sit on the couches. We shop with glee and bring home some new furniture.

CJ loves the idea. We prepared to shop for his new chair, but didn’t even have to buy one. Someone listening to me gloat about our fabulous idea offers a well-made used rocking recliner in good shape. It even matches the new furniture! He loved it. We loved it. It’s ability to withstand The CJ Factor wasn’t clear but we had high hopes.

Not too long ago, I was going about my daily routine, cleaning and desliming, when CJ performed “The Flop,” into his chair. There was a groan, a pop, and the chair cracked in two like a nut. Luckily, CJ was fine, since I was falling on the floor myself with tears in my eyes from laughing. Calling 911 would have been a stretch for me at that moment.

Now he has a new chair that matches the couches. He told me the other day to “get out of my chair. Sit on the couch.” Well…at least one of us is following the rules….

Never Leaving Neverland

Lost boysThis is the year CJ should be graduating.  He did repeat kindergarten, but he should be graduating this year.  I say “should be” because the kids that were born at the same time he was are graduating and going on to college.  As always, this is all bittersweet.  I am so happy for all of these great kids, especially the ones going to my alma mater.  There is real joy in watching them reach this milestone, ready to take on the world.

It has been so sad for me, though.  It brings back all The Nevers…all the things that will never be.  And it starts the grieving process all over again.

I occasionally make home videos for fun and I was asked to do a senior video for a young man who is just a couple of months older than CJ.  As I begin the project, I start putting together photos of this young man as a child.  He is wearing the exact outfits that CJ had at that early age.  He is playing with all sports toys like young boys do.  In the photos, I watch him grow up.  He now plays multiple sports.  He is a big, athletic kid…a baseball player, with big brown eyes and brown hair.  And he looks so much like CJ in some photos that I almost did a double take.

It was a gift for me to do this for them and I loved doing it, but at the same time, it ripped my heart out in a way I never, ever expected.  This young man has a scholarship to play baseball at a major university.  His brother plays football.  They are good looking, smart and nice.  I am beyond thrilled for them to be able to do what they love so much.  But it tears my heart out all the same.  I don’t want to take anything away from anyone else, especially anyone who deserves it this much.  But I just wanted CJ to be included in this dream, to be a part of our own milestones like this boy is experiencing, and once again, he is not.

CJ’s 18th birthday will come and go, and he will return next year to a wonderful school with wonderful teachers and kids.  He will help with the football and baseball teams.  He will continue to learn and grow.  He will increase his job skills.  We will find a way to make a house for him.  And he will be fine.

I will be too.


It’s a Gift

autism smiley-faceLast night, I was reminded of something I so often forget (or at least lately I do).  I was reminded how funny CJ is.  I was reminded how happy he can make the people around him.

We went to a graduation party for one of his friends.  This young man is “typical” and everyone there was “typical.”  Yet most of the people there knew CJ, or at least knew of him.  They were all very nice and as I watched, I realized they were genuinely happy to meet him.

He was not crazy about the more crowded area towards the back of the house where everyone was congregating.  So he positioned himself at the front window.  He would look out between the blinds and then, as people walked up to the door, he would jump up to greet them.  “Come on in!” he would say over and over.  “Come on in!”  Every single person walked in with a smile on their face.  Someone commented on it to me.  She was smiling…thought it was great…and all of a sudden, I had a flash of something that happens every time we go out of the house.

Think Walmart or Sam’s Club.  Now, think Walmart or Sam’s Club on a Saturday.  Uh huh.  Exactly.  Most people coming out of either place on a Saturday are not happy about it.  They don’t want to be there.  People sort of trudge out of the store looking grim, looking harassed, looking down frowning or hurrying straight ahead, trying to get to the car before their toddler goes head first out of the cart.  One friend I have says she hits Walmart like a surgical strike, with a goal to beat her last best time getting in and getting out.  Everyone knows that you only go to Sam’s or Walmart or any big store on a Saturday if you have no other choice.

And then here comes CJ.  We will walk into Sam’s or Walmart on any given Saturday.  As we walk in, CJ always greets each person he sees…every one of them.  “You have a great day!”  “See you!”  “You have a great day!”  He has a huge smile, and will at these moments often look directly at people.  Remember, he’s nearly 18 and he’s six feet tall now.  People’s are usually startled for a moment, but then their reactions are almost always positive.  When they see him smiling and talking to them, they can’t help but smile back.

And he had everyone at the party last night smiling.  The other mother and I were remarking that a kid being cute is often the thing that keeps a parent from reacting in an “inappropriate” manner.  I have a vivid memory of him at a young age.  I don’t remember why, but I was so mad at him.  I was speaking in a loud tone of voice (insert “screaming in frustration” here).  He just looked at me and then he grinned that huge grin of his.  I couldn’t help it.  I started laughing and then so did he.  And once CJ laughs –  everyone laughs.  You just can’t help it.  I finally looked at him, and in between cracking up with laughter I said, “You are still in trouble!”

Well, sort of….

The Good Old Summertime

autism gonecampingSummer time is almost here.  The kids are ready.  The poor teachers as SO ready.  Even I am a little ready for the craziness of all the activities to stop for a while.  Every parent knows that the bad part of summer is “What am I going to do with these kids all day”?  That’s normal.  Typical.  My neurotypical daughter is going to a cheer camp to learn how to flip some more, because you can never flip too much.  She also has big plans with friends to swim at their houses and play outside.  I plan to let her.

Summer with CJ, however….

We learned a long time ago that staying in a hotel with CJ is basically impossible.  It packs us in too close together.  Eating out is not an option most of the time either.  It’s funny.  I thought money would be the issue.  That it would be too expensive to stay at the nice hotel.  Too expensive to eat out for all our meals.  Nope.  The problem is that it just plain doesn’t work.

CJ gets up as early as 4:30 AM on a daily basis.  Yes, you read that right.  Being autistic means being all about The Schedule.  Vacations, weekends and days off mean nothing to someone who is “on a schedule”.  He HAS to have his medications as soon as he gets up or we will all suffer that day.  That means one of us is up at 4:30 AM, rain, shine or insomnia that ended at 3:30 AM.  It’s irrelevant.  What’s relevant is the prospect of a day with CJ, unmedicated (Him, not me).  It’s nice that we can now stagger into the kitchen, give him his medications, give him something to eat and then stagger back to bed.  Mercifully, he will now entertain himself.  If there is more than one room, we can sleep in one and he can watch TV, etc. in the other.  But does anyone with a budget and an autistic kid “on a schedule” have the funds for more than one room at a hotel?  Not if we want to eat too.

That said…eating out….NOT fun!  The time has to be exactly right.  The food has to be just right.  If it is, we eat.  But once CJ is done, he wants to leave.  Now.  Immediately.  He’s done.  We’re done.  Doggie bags and unpaid checks?  Irrelevant.  Oh, CJ is personable and funny.  The servers always love him.  He has nice manners and thanks them.  But when he’s done concentrating on eating, the sensory overload from the restaurant becomes too much.  Time to go.  He’s done.

Call me fussy, but I don’t want to get up at 4:30 AM to get dressed and go out to eat.  If we have a condo, at least we can cook in our robe and slippers.  And maybe go back to bed.  Sometimes, I am not thrilled with cooking, etc. on vacation, but hey!…if we get a vacation, it’s worth it.  We live in FL, so there are lots of options here.  We prefer the beach on either coast and try to make that work.  We just have to remember that when CJ is done…he’s DONE.

The newest, greatest thing I’ve recently discovered is a youth group called “Capernaum”.  It is run through Young Life Ministry and is designed for special needs kids.  The kids meet at a local church the last Friday of each month.  They get dinner (CJ’s favorite part), sing songs, fellowship and have a short lesson.  (When I ask about it, he can usually only tell me what they ate.)

The very best part about Capernaum is that they have summer camp.

Let me say it again.  Summer camp.  As in….SLEEP OVER SUMMER CAMP!!!!!!  It is 4 nights!  4 whoollle nights!  (Don’t get me wrong…I love my kid, but my husband and I love each other too and we occasionally need a break.)  Last summer was the first time CJ went.  He didn’t really want to go and I was really nervous.   (I won’t elaborate on what made me nervous.  If you have an autistic kid, you’ll already know, and if you don’t, you’ll think I’m borderline crazy.)  He did great and he had a great time.  He didn’t even blink when he went again for a weekend in January.

This summer, we are trying for a new day camp.  The problem with “special” kids is that the older they get, the fewer and fewer options there are for summer activities. I have seen two posts on Facebook in the last week from people looking for ideas for their middle schoolers with special needs.  These kids have been turned down by places that can’t accommodate the specific disability. The parents work.  There are few options.  I had someone tell me that they are paying someone $250 a week to watch their almost 20 year old son for the summer.  Summer vacation here is 11 ½ weeks long.  I counted.

That’s a long time.  That’s a lot of money.

Of course, the very worst part of summer is that “the routine” is messed up.  DO NOT mess with an autistic person’s routine.  I have had CJ standing in the driveway crying because the bus wouldn’t be coming over Christmas break.

As we speed toward the end of the school year, I am reminded once again of the “can’ts”.

Let Him Eat Cake

Autism UnbirthdayCJ’s birthday is in August.  The dog days of summer.  Years ago, we went on vacation to a condo at the beach with a cool pool right around his birthday.  We told him that the vacation was for his birthday.  We had a cake and celebrated.  Fun for everyone.  Why not?

I didn’t think much about it after that.  The next year, CJ wanted to know if we were going to “the condo” for his birthday.  Sure.  Why not?  When we did go on vacation that year, it was “for his birthday.”  We had a cake.  Everyone was happy.

Now, his birthday begins the first time we do anything for any type of vacation during the summer. Staying at my mom’s place counts.  A trip to the beach counts.  We go…it counts.  One year, he managed  to have 3 different celebrations with 3 different cakes.  Oh, and there is NO singing.  Not sure why.  From his first birthday on, he cried whenever anyone sang.  If it was just me singing, I could completely understand it, but apparently he just doesn’t like “Happy Birthday.”  It may be a “key” thing, but since other people cry too when I sing, I wouldn’t know.

A couple of years ago, he demanded (and got) balloons.  Another time, he told us to all hide and jump out at him and yell “surprise!”  We did.

He LOVES his birthday.  No matter how many times a year it comes.  It cracks me up every time.

It is not even the end of May and he just yelled to me from the other room.   “No singing!”   What???  “No singing.”  “For what??”  “My birthday”.

OK.  I’ll get right on that.

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.

If you build it…

Autism Adult Housing blueprint …will they come?

If it’s semi-independent or assisted living for young autistic adults, not only will they come, but apparently they’ll already be lined up around the block, begging, beating the door down.  There is no waiting for anyone to “come”.  People…parents…are desperate. There’s beginning to be a scattering of information on the internet…organizations who advocate for housing, employment opportunities, etc., for these children who soon won’t be children any more.  There are articles with links to other articles, and every so often, a few videos of parents who have seized a circumstance and figured out a house or a job for their child.  One.  One that works for them…their income, their resources, their location, their state funds, their relationships.  It’s amazing and beautiful…but it doesn’t translate to me.  Or CJ.

What are WE going to do?  And if we can figure that out, is there a way to consolidate it?  Box it up?  Strip it down?  Make a master template that will work for anyone?

I met a woman who told me that when her son leaves on the bus for school, she runs out the door to go…anywhere.  Anywhere at all.  She will go sit at Panera by herself so that she can get out of the house.  She is dreading next year when he is too old to go to school and she won’t be able to leave.  While it is not a prison or a sentence, it feels that way.  How, after all this time and work and effort, could it feel like it’s getting worse…not better?

I think the worst part is how much these parents love their kids.  This is not to say in any way, shape or form that other parents do not love their kids as much, but with autism, you have to fight for every little thing with these kids.  The intensity of the love may be similar, but the bonds are shaped sometimes very differently.

Seven years after CJ, my healthy typical daughter was born.  When she started kindergarten, I pulled up to car line to take her into her first day at public school.  800 other parents walked their kids in that special morning, but my daughter had been waiting for so long to get dropped off in car line like her brother that she insisted.

I dropped her off at 8:05AM and came back at 3:05PM and picked her up.  That was it.  What??  What do you mean that is it?  I was confused.  Where is the notebook with the explanation of her day? When are the meetings scheduled?  When do we go over curriculum?  When do I explain to everyone her strengths and weaknesses?  Nope.  Nada.  All we had was curriculum night along with every other kid in her class.

Don’t get me wrong.  She thrived.  She loved school and made tons of friends.  She will go to high school, learn to drive and go to college.  She will eventually get a job and move out.

No one told me it could be like this.

And so….it begins.  CJ needs a place of his own…a place to share with a few friends like him…a place to live with as much dignity and independence as we can find a way to give him.  That place doesn’t exist.  Yet.  So…how to build it?  Where to start?

The first steps are to take everything I can find so far…everyone’s information about everything they have thought of, researched, toured and dreamed of, and then try to sort it out, document it and figure out what will work for us.

I am hoping that this blog will be a guide, a reference and an inspiration to anyone who passes through here.  I don’t have the answers yet, but I’ll try to document our journey every step of the way.  Perhaps the solutions to funding and building a house for CJ will be the prototype for something larger.  I have meetings scheduled, a business plan in the works, an attorney and a CPA lined up, and some good leads on design and funding.  This could be big or it could be really small.  Either way….

It’s all starting with a house.

Autistic Guardianship or The Lid on Pandora’s Box

Autism Adult GuardianWell, I’ve done it now.  I have actually started.  I have a appointment to meet with an attorney about guardianship. I have started the research on a non-profit organization to build a house for CJ, his friends, and hopefully others like him.  And I have let this blog go live.

There is a part of me that is so empowered and excited.  There’s a part of me that is scared to death.  There is a lot riding on this.  My son really does need to “move out” and become more independent.  He is happier when he is with his own friends, doing his own activities.  He loves going to youth group and camp.  He loves going to baseball and football practices and games at school.  I love seeing him happy.  I love the idea of restoring some balance to our lives.

There is a HUGE learning curve with all of this.  There are big questions.  Can I do it by myself?  Do I need an attorney?  Do I need an accountant?  How does it all run?  Will it end up costing more this way?  Will it end up being more work this way?

There are so many unknowns at this point.