Money, Money, Money

Last Monday, I spent the morning with Nick at our local coffee shop.  It's one of the few places where the employees know Nick by name, and he feels very much at home.  (Not to mention, coffee is gluten free.)  Nick can relax and chill. As a consequence, I never know what surprises lurk here!

Today was no exception.  Nick surprised me with his understanding of abstract concepts of money, and he totally perplexed me with his lack of understanding of money.

First, the cerebral concept:  he has to pay for his own coffee.  Well, he doesn't have a job.  Yet.  With his school load and extra curricular activities, he has no time for a job.  My husband and I want him focusing on anything related to schooling. So he surprised me with his comment, "I can't waste my money on coffee like I did last year.  I like coffee.  I need a job, Mom."

Quite simple and straightforward. Typical for a teen with autism.

How does a mom explain to her son with autism that there are only 24 hours in a day, and he is already using them all?  I used a diagram to illustrate his activities and the lack of hours for a job. That didn't stop Nick.  He wants to earn his keep--a concept my husband and I have taught all our kids.  My only solution was to offer Nick jobs around the house for some extra cash.  AND he could get a job over the summer.  "Great!!" he exclaimed.  I am THRILLED that Nick understands the concept of money--earning it, spending it, saving it.

Then came Nick's lack of understanding.  He used a debit card at the coffee shop for the first time.  He swiped his card and got his coffee, "Cool!"  He took his receipt, and I logged on to the bank website so he could see the transaction.  He looked at me with confusion.  Money was missing from his account.

When we opened his bank account, the banker explained the debit card.  Nick said he understood. Obviously, he didn't.  I showed the amount to be debited from his checking account via his receipt, and he looked at me with total dismay?  "I have to pay my debit card?" he inquired.

I shook my head yes.  "The bank will give this money to the coffee shop."  Nick didn't like the idea of his money going out of his account.  He understood cash, but this electronic thing was confusing him.  He responded, "You'll teach me this money stuff?"

I reassured him I would.

I couldn't believe the complexity of monetary ideas:  one moment I was surprised that Nick understood the idea of earning his own money to spend, yet the next moment I was astonished that Nick didn't understand the idea of a debit card.

Knowing Nick, he'll learn this lesson quickly!!

Paying For Therapies: Cash, Government, Insurance

Earlier in the month a friend had a discussion going about government mandated insurance.  She eventually asked me my thoughts.  Here are the questions followed by my response.

So do you agree with your state's law mandating autism coverage? And for families without private insurance, do you think the state (federal, state or local government) should assist families who can't shell out tens of thousands of dollars for their children's autism treatments? I have to imagine that you have mixed feelings about these questions given your political beliefs.

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Sheryl Johnson You're right. I have very mixed feelings. If I die tomorrow, would my kids be able to live independently? Maybe. We are thousands of dollars in debt. We have not let $$ be the reason to not do something for our boys. However, we haven't thrown $$ into every new idea/fad out there. Parents of special needs kids are desperate to find a cure, solution, therapy, anything to move the kids forward.

My kids have private insurance as well as state coverage. The state coverage is minimal, and it can be revoked at any time. That has happened too. Can't rely on it. When a service has been cut, we've paid cash to continue the therapy if it has been successful. The school and state have provided therapies, such as speech and hab, and they have helped my boys tremendously. 

The flip side is having to follow the regulations set by the school and/or state. Children, well, people don't fit into nice rows and columns, ie rules and standards. Special needs children fit even less. Everything needs to be individualized. My kids are a great example of this. Three have autism. The standards cannot be applied equally to them, because the autism symptoms are different in each one. Due to govt regulations, though, the same set of applications has to be administered to each kid--whether or not it is working--which can be a waste of time, hence money. It frustrates the therapist and child.

Then there are meds. Typical medical protocol is to medicate my kids--especially when they were younger. The meds just doped them up. After 2 years, we took them off. I did a ton of research (and I still do). Alternative therapies have proven much more successful. Insurance doesn't cover these. Doctors don't necessarily agree with me, or each other in this realm. As MOM, I have the responsibility to do what is best for my kids. So I am self-employed to stay at home. (husband works full time) We pay cash for what my kids need. If you have known my kids for the last 10-14 years, you can see the progress.

So here's the catch 22 syndrome... yes govt funded services help financially and therapeutically to a point. If my kids were stuck with govt restriction and typical medical protocol over the years, they would not have made any progress and most likely would be on some sort of govt program permanently. Yes, having freedom to research, choose, and pay privately has allowed our kids to thrive and prosper. More than likely, they will not need govt support as they move out of the house.

Tis typical for a family to pay $15,000 annually for a child with autism,. I have 3 kids. Do the math.  Here are the results.  One has totally recovered--no services from school or state. The other 2 have minimal assistance from the state, and one of those has some help from school--the other is moving on to college. We are slowly paying off our debt. Our children are thriving. It is a sacrifice, but that is what parents do. I can also go on and make comparisons of some govt services vs private services... but I think this is long enough. And this is just a touch of what I could write.

Joining The Workforce--Again

Yep.  I am working full time again.  Life with autism isn't cheap.  Therapies, foods, doctors, supplements, etc. are expensive.  Insurance doesn't cover a lot of what we do.  However, the boys have thrived best with what insurance doesn't pay.  Figure that one!

SO the saving account is depleted.  The credit card balances are climbing.  A financial adviser would think that we are insane.  Nonetheless, Mike and I agreed long ago that we'd do whatever we could for our boys--to help them learn to be independent.  Money would not be an object.  Our boys are priceless!

The most expensive  item we ever purchased for the boys was the pool.  The doctors and therapists all agreed that a pool would be the best therapy for the boys.  We were not disappointed.  The boys learned to swim.  They played and socialized. They received their physical therapy in the pool for a few years. Now they hang out in the pool.

Getting back to work--I've been working at the same place for about six years.  It is seasonal, temporary, full time work. It's good to exercise my brain. I work on projects.  This current project is scheduled for five weeks.  I have worked here long enough to make friends.  The "regulars" are like a family.  Of course, as in all work places, some people are more important than others.  It is good to connect with these people.

Last year I had the opportunity to work from home.  It was great.  It was bad.  I loved being able to work at my leisure.  I actually took off to the beach last year, and I was able to work at coffee house, at the beach, or at any quiet place I chose.  The bad part was having to discipline myself to follow a work schedule--even if it was the schedule that I set.
 
After this project, I'll be able to pay off a credit card.  That is the upside.  The downside is life is more chaotic, but that is good for the boys.  They are learning to do things on their own.  I am always surprised as to what they have done.  Or not done.  I am not saying the surprise is always good, but yes, I am always "surprised".  HAHAHA  A good, no-- a great sense of humor helps in this realm.

Yes, I do look forward to payday!

Autism At 18: Government Needs A Renewed Diagnosis

Government agencies and doctors claim that autism is not curable.  So why does Ryan have to be rediagnosed with autism at age 18.  He's now a legal adult, but how could that change his disability of autism?

Our previous state case manager said that he needs to be "redetermined" to be autistic, basically because the law says so.  I think otherwise.  I think it has to do with economics.  Money.

Not only does Ryan need to meet the criteria of autism, which is deficiencies in three of six specific categories.  Ryan must be "sufficiently deficient".  What does that mean?   No one could answer that.

We now have a new state case manager.  I get the impression that she is new to the whole system.  She is very polite and professional.  And new.  It takes time to develop rapport and trust.  That adds an extra dimension to this whole process.

The most frustrating part of this is that both case managers seemed to assume that I knew all about this "redetermination". My kids have been in the state system since 2007, and never has anyone ever said that they'd have to be retested.

This brings up so many questions as to what might happen to Ryan.  Just a few:  What will happen if he loses services and therapies?  What type of training might be available that Mike and I can afford?

Again, it comes down to prayers.  I pray that we are guided to help Ryan in the best path for him.  I pray that the psychologist and speech pathologist give appropriate tests to assess Ryan's true abilities.  I pray that Ryan does his best.

We now wait for the results of the tests.  Nothing like waiting!