More Problems with Clothes

Yesterday afternoon, I got a text from my ex-wife.  She said that Middle Son keeps taking his clothes off and it was driving her crazy.  She wanted to know what he does at my house.  I texted back that I let him be naked in his room and the bathroom, and occasionally he runs from his room to the bathroom naked.  She said that that was what he is doing at her house.

But he's going from his bedroom to the bathroom at the other end of the house, instead of the bathroom next to his room.  So he's running naked the entire length of the house.

Middle Son has a knack for finding the loopholes.

Two Hands

We had Middle Son's special ed eligibility meeting yesterday.  One of the things that we talked about was the fact that he rarely uses both hands when he is doing something.  He also doesn't cross hands from one side of his body to the other very often.  Which is a developmental level typically meet in toddlerhood.  We were trying to think of things that he uses both hands for, and had a hard time coming up with things.

Last night after dinner, I noticed something.  He scrapes his plate after dinner and uses two hands, one to hold the plate, and the other to scrape it with a fork.

Clothes

I was looking through Middle Son's notes from school for the week.  In addition to the one about wearing underwear, there was one that said "wearing clothes properly, not backwards and inside out."

Cost of Raising a Child with Autism

I was reading an article last night about the challenges of paying for the care of a special needs child when the parents are divorced.  One of the things that caught my eye was this:

Parents of a child with autism, on average, have lifetime earnings of nearly a million dollars less than other parents.

I'm extremely fortunate financially--I earn enough money to be able to pay for a care-giver who is specially trained and has specific experience caring for children and adults with special needs.  Last year I spent about $40,000 on care for Middle Son to make sure that he had appropriate supervision after school and during the summer.  Plus a couple of thousand more for his medical expenses (neurologist, seizure medications, etc.).  And several thousand for social skills groups and other costs for Oldest Son.  My total expenditures related to their special needs were probably close to $50,000.  According to Census data, that's about the median household income in the US.  Very few parents can cover those kinds of expenses.

The author, Karen Czpanskiy, discussed how our family laws don't really address the problems that come up with special-needs children.

Today, divorce law largely ignores the economic problems faced by the divorced parent of a special needs child. We need a new post-divorce remedy, which I am calling "chalimony." It would be available to the parent with whom the disabled or chronically ill child lives most of the time if that caregiver is unable to be employed full-time because of the child's special needs. The child's other parent could avoid paying chalimony if he or she were meeting enough of the child's needs to permit the primary parent to work full-time.

I remember a conversation with my ex shortly after we got divorced in which she complained that she would never be able to work.  Exactly the short of situation that Czpanskiy is envisioning.  Ultimately, we resolved it by having Middle Son move in with me, and I hired a paid caregiver.  But if I hadn't had the financial resources to do that, I don't know how we could have addressed the problem.

Underwear

The school sends home a note with Middle Son each day, that lists things he did well, celebrations, and things he needs to work on.

This week, one of the things mentioned as needing work was "Remembering to wear underwear."

One Bit of Information

Sometimes one bit of information makes all the difference in how people respond to something.

Middle Son is profoundly autistic.  He doesn't speak, but he laughs and hums and grunts.  He loves to jump and run and spin.  Sometimes I bring him along to Oldest Son's Boy Scout troop meetings.

I can ALWAYS tell who knows about his autism and who doesn't.  As he is humming or giggling or spinning or jumping, the people who know look at him warmly and affectionately.  The ones who don't glare and scowl.

Via liberal japonicus I saw a story in the The Guardian about Glenn Campbell, who now has Alzheimer's. There was a quote from his daughter:

"When he messed up, people were coming up to me after shows and saying 'Is your dad drunk or is he using again?' It upset me. Now this is out they're just going to be supporting and loving him rather than angry that they paid to see him."

Different condition, but the same result.

Guardian

I was listening to "Guardian", by Alanis Morisette today.  The chorus really got to me.

"I’ll be your keeper for life as your guardian  
I’ll be your warrior of care your first warden  
I’ll be your angel on call, I’ll be on demand   
The greatest honor of all, as your guardian."

I think all parents feel that way about their children.  But when you have a developmentally disabled child, those feelings are especially powerful.  I know that Middle Son will never be able to take care of himself.  He will always need someone to be his guardian.