Archive for July 12, 2013

So Typical

E & CJ 2I’ve been thinking about this post for days, because there’s still a part of me that can’t wrap my head around it all.

What do you say about the miracle of The Typical?  What do you say about someone who is born into this world extraordinary, simply by being ordinary?

We waited a long time after CJ was born before we even dared to consider having another child.  Both Chris and I loved CJ completely, but at the same time, we were scared to death.  For a whole handful of reasons, we finally decided to go forward, hoping for something that anyone who hasn’t borne a child with a disability would simply take for granted.  My soul went on tiptoe for nine months.

And then came Elizabeth.

Elizabeth with her clouds of hair that shift from chocolate to caramel in the sun.  Elizabeth with her pixie smile and her all-girl attitude.  Elizabeth, my completely typical, utterly unique daughter.

She excelled on every level from birth.  She walked before she was 9 months old.  She didn’t bother to toddle…she just skipped right over that part and stood and walked.  She took her first steps and then she ran!  She could speak in full sentences in her tiny, tiny voice before she was a year old.   One day, when she was about a year old, she was walking around when I heard her count to ten to herself.  I almost fell on the floor.  I had spent years with tutors, therapists and manipulatives trying to teach CJ to count to 10.  He was now 8 and still couldn’t do it.  That had been our normal.  And I knew then and there I was in trouble.  Now I was dealing with both ends of the spectrum.

Elizabeth was born older than her years in so many, many ways.  They call such children “old souls” and she came into this world with a strong sense of right and an inner knowing.  Give her good information and she will (usually) make good choices.  She is confident and direct and she continues to be (mostly) unimpressed by people with special needs.  Life with CJ has led her to conclude there’s nothing special about it.  CJ is special because he’s her brother, not because he has autism.  We have a friend with a daughter with Down ’s syndrome.  E usually goes out of her way to help protect this girl.  Lately, she has been irritated with her and not always so nice to her.  I finally realized that she was treating her like she treats anyone else annoying.  The girl was a person and she was irritating her, period.  I couldn’t say she was wrong.

Elizabeth is around special needs kids on a regular basis and doesn’t seem to care much.  I always say that nothing intimidates her.  She lives with CJ.  She is not scared of boys or kids bigger than her.  She will take on the big boys at school in foot races (and often wins).  She takes on the bullies too.

She is a normal 10 year old girl.  This means she drives me nuts.  She rolls her eyes.  She fights with her brother.  She doesn’t do her chores when she’s supposed to.  Sometimes she’s messy and thoughtless, like any kid.  But she is also wonderfully understanding and kind.  She will stop whatever she is doing to help me with a problem with CJ.

Once I was in the middle of telling her how much she had irritated me that week by not doing what she was supposed to…and then I realized that she had dropped what she was doing to help with CJ more than one time in the last day.  I took a deep breath and then called her back over.  I told her that I really appreciated how she helped me, and that it really made a difference, when I was in the middle of something, that I didn’t have to stop to take care of what he needed.  She looked at me and said, “I don’t mind.  I want to learn as much as I can about helping people with Autism so that one day if I have a child with Autism, I will know how to help them.”


Not “Autism is my worst nightmare”.  Not “having a child with any special need of any kind would ruin my life”.  Not even “CJ has ruined my life”.

I never would have guessed.

For the parent of a child with autism, there is no typical.  There is only extraordinary.


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.