Saturday, May 29, 2010


We have been honored to host a couple of industrious robins this spring.  I'm pretty sure it is only two.  They built a very messy nest over our back door and an incredibly perfect nest in the window box on the front porch.  The window is in Sam's bedroom closet, so we had a great view from in the house that didn't bother the robins too much.  They laid 4 eggs in the front nest first and three of them hatched.  It was just amazing to see them grow.  It seemed like they doubled in size just about every day.  

Our entire neighborhood was awestruck.  I could see them shushing their dogs as they walked by.  Several people told me that this was a sign of good luck - and they didn't even know about the nest over the back door!  The robins were pretty friendly while nesting, even letting me snap some photos.  I'm sorry to say, the pictures didn't come out.  But once the eggs hatched, they suddenly were not so friendly and began dive bombing anyone who came up the front steps.  (By a strange coincedence, "The Birds" was on tv that week.)  I began to think we could cancel our alarm system since we now have attack robins.  But Charley met one of them on the front steps and had a long conversation with it.  We assume it was the father bird since he seemed to have a Marine buzz cut hairdo.  After the man-to-man talk, they stopped attacking.  

Then one day the nestlings were so big I couldn't figure out how they all stayed squeezed into the nest.  The next day they were all gone.

Two days later, I noticed that the messy nest was occupied.  I discovered that I had a great view of this nest from my kitchen window.  Still no good photos.  Sam and I go out that door and I was a little concerned about the attack robin phase of robin rearing, but they didn't bother us.  They seemed to enjoy watching me with Sam. They would follow us as we walked from house to garage, chirping encouragement!  A horse breeder told me once that her animals seem to have an awareness that children with disabilities need extra gentleness.  I wondered if the robins knew that this was my fledgling.  Yesterday they all flew away from that nest.

This morning we noticed one fledgling on the ground in the back yard.  It seems to have "developmental disabilities".  The thing that amazed me was how hard both parents were trying to bring the fledgling along.  They just were not going to give up.  They were fierce about trying everything they could think of to help this last one get off the ground.  I was inspired by their determination.

I don't know what will happen.  Our back yard is a pretty safe place with plenty of stuff for a bird to eat while it takes extra time to learn to fly.  It looks like the parents know what they are doing.  

I have always heard that animals kill the "runt" of the litter.  It always bothered me.  This doesn't seem to be true for robins.  I'm rooting for them.  They aren't cold and uncaring.  They don't believe in survival of the fittest.  They are passionately trying to save this little one.  If they succeed in giving their runt that little extra boost, I'm sure they will be proud of themselves for years to come.  If the baby dies, at least they will know they gave it all they could and they did their best.  And the memory of the extra time they spent will be sacred.

I can relate.

Thursday, May 27, 2010

Exceptional Parents

There is a great magazine (or anyway was) called Exceptional Parent for the parents of children with developmental disabilities.  I haven't seen it in awhile, I guess because Sam isn't really a child anymore.  But the idea has stuck with me.  Exceptional children require exceptional parents.  Sometimes I have risen to that challenge and sometimes I have not.  It has troubled me lately that I am on the "not" side of the equation.  We are coming up on 60 and retirement and I am TIRED!  But Sam's needs keep growing, even though he doesn't.  When Charley retires from teaching we will still need income and we are actively thinking about what we might do.  I keep asking myself who I am and what am I good at.  The answer is always that I am Sam's mom and I am good at being Sam's mom and also a lot of craft stuff.

So fine.  My career, so to speak, has effectively been being Sam's mom.  I should think of it as my career.  

At one time I was a pretty great Executive Assistant to several guys.  Now my title is Personal Assistant to Sam.  (for which the State of Illinois pays me significantly less than the other guys I was Executive or Personal Assistant to... including the church job!)

Nevertheless.  I have been keeping a log of my day and started to explore time management for caregivers.  I've taken a lot of time management classes in my life as an Executive Assistant.  They often bugged me because they advocated delegation as a great method of time management.  When you are the "delegatee" that doesn't help much.  Now that I am a stay at home Executive, there has to be a different sort of time management that will work for me.  

So I am taking all the stuff I learned and all the realities of my crazy life and trying to come up with a new system.  I call it the "worry book".  I just keep a spiral notebook and write down all the things I am worried about not getting done.  Housework, bills, Sam Care, phone calls, sweaters for the grandkids, grocery shopping.  Then on the next page I put tomorrow's date and start thinking about what is most important to get done tomorrow.  I have discovered that I think best in the late afternoon or just after dinner.  Doing this in the groggy morning when I have to get Charley and (Hopefully Sam) out the door is just not effective.

I have three columns.  Time, Task and Actual.  I write down the time I hope to get things done and the things I hope to do them.  Then on the next day, I keep track of how the day goes and what time (if ever) I actually accomplish my tasks.

In this way, I'm getting a written record of how my day goes and hopefully I will be able to see some ways of becoming more effective at doing my job.


Tuesday, May 04, 2010

Exciting day

Sam and I went to Starbucks today to see are good friend Eileen.  Eileen worked very hard for many hours trying to get Sam to say her name, and he used to say it.  But he hasn't said anything in years apart from the occasional "Sushi" request!

Later this evening we went to CVS to pick up some meds.  Eileen is the manager of a CVS store.  Just outside the CVS, Sam stopped and said, "Eileen"!!!!  Inside I was showing him a toy I thought he'd love, but he didn't seem too interested.  I said, "Sam don't you want this?" and he said, "No."  When we got home I was a bit encumbered with some packages and, of course, Sam.  I stood at the back stairs and wondered outloud, "How are we going to manage this."  Sam said, "Up."

Of course the really sad part is that he has these moments every now and then.  And then they are gone again the next day.  But it was really great while it lasted. 

It confirms in my mind that he really does know what's going on outside his head, he just doesn't remember how to talk very often.  One doctor told me that is very common among stroke victims.  His theory was that Sam suffered a stroke just a few weeks before birth.  Certainly, Sam has many things in common with people who have had a stroke in the same part of the brain that Sam has damage and treating Sam as though he was a stroke victim has been a very good plan.  It's probably the best theory we have about what is wrong with Sam.  This inability to speak even though he understands what is said to him is called aphasia.  He doesn't understand everything, but he understands a lot.  I never know how much, but it seems safest to assume he understands just about everything. 

I wish we knew.  I wish a lot of stuff. 

I went to the Esperanza Community Services Annual Banquet last night.  It was great, as usual.  Amazing food, great art, saw a lot of people I really love and laughed a lot.  Bought a quilt made by my friend Margaret.  That's a real treasure! 

But there is a real problem with going out in public.  People say stuff and I don't know the correct response.  For example, several people last night said that old line "I don't know how you do it.  You are amazing."  I don't know what I'm supposed to say to comments like that.  I have tried many responses and rejected even more.  Like I have never actually said, "Well, my parents are from the Planet Krypton."  Last night, I came up with a new response.  I said, "Well, he's just so darn cute.  It really makes things easy."  I haven't slept in two nights, but he's so cute that I don't mind... much...  Well I do mind.  A lot.  But I don't know what else to do.  Oh! Oh! There's a good response: "I'm just too stupified with exhaustion to think of an alternative to doing what I do."

Another response I've been thinking of using is to tell that story of the frog in the boiling pot.  You know the one: If you put a frog in a pot of boiling water he jumps right out again.  If you put him in a pot of cold water and gradually turn up the heat, he'll just swim around until he's cooked. 

If someone hands you a kid with profound and multiple disabilities and tells you the whole litany of problems all in one go, you run for the hills.  On the other hand, if someone gives you a beautiful baby boy who just has trouble swallowing, you learn to cope.  Then they say, "well he seems to have one or two other problems."  And you notice a few more as the weeks and months go by.  Each time you say, "Well, that's just one more little thing." After awhile the doctor can say, "well, he seems to have spinal meningitis and he's probably going to die in the next few hours.  Oh no.  Our mistake, it's just an ear infection."  That's a great strategy because you hardly notice the next 42 little new things wrong because you're so happy he made it through the spinal meningitis thing.  After that, they keep on adding stuff gradually for 28 years!  So when someone comes up to you and says, "Wow!  You're swimming around in boiling water and you look just fine."  You say, "Well, he just so darn cute."

I don't believe that story about the frog.  Who would do such a thing to a poor frog anyway?  Or why?  Maybe I should go with the one about my parents being from Krypton.