Gone Daddy Gone

Spring Break approaches in a matter of hours!  Although I feel like James has JUST gotten back into the swing of school and therapy after a winter of viruses, I am looking forward to this holiday as if he had a perfect attendance record.  I know it would be great for James to stay here and try to fit in as many make-up therapy sessions as possible.  I just can't.  Mom needs to get away and I am indulging her.  Away from driving, away from schedules, away from concrete.  I need sky and surf and sand - and a lot of it!

My main concern in life is James.  I care only if and how he eats, drinks, and sleeps. My job is to get him to and from school and therapy, monitor his progress, and then to keep him on his toes at home.  I am so wrapped up in him that I forget myself.  I am not saying I am "selfless."  It seems more physical than that.  Like how I cut his nails and then forget to cut my own because, in my head, I just did that.  It's insane and bizarre to not even think of looking at myself in the mirror before I head out the door. I rarely remember to have a drink. These are not conscience choices, but still, my behavior has to stop.

Five years ago, I had a cerebral stroke and wound up in the ICU for two weeks then the hospital until I could have a heart operation.  Two days immediately before, a pediatric neurologist told us that we should look into a long term care facility for our less-than two year old son.  For the previous six months, I had been jumping up and down trying to get medical attention for what I saw was happening to James.  And now instantly, I went from being an over-protective, over-anxious mom to this?  James was even sitting in his stroller "reading" a book at this point, not even exhibiting the behaviors that I had been listing.  Overnight, James had gone from being a happy toddler to a fearful one who would not venture out of his stroller, let alone out the door of the house.  His words disappeared.  His only interest was to wave a stick back and forth in front of his face.  He was lost and we could not reach him.  So, day after day, little by little, I took him out the door, then down the stairs, then around the block, then to the store, then through the park, and eventually - and successfully - the playground.  At home, I turned to the television.  I knew every Wiggles song and dance.  I "enjoyed" it so much that finally James got up too.  I forgot to eat and drink.  I did not sleep much (and neither did James).  But it didn't matter because, slowly we were getting him back.  After a special visit from my dear friend who worked (and still does) with autistic children, who gave me a crash course on the terminology, we got immediate attention from the doctors. One who suggested James should be "institutionalized."  BOOM, clot blew through a hole in my heart (surprise unknown birth defect!) and into my brain.

So, now, after surviving, you think I would know better?  Take care of myself?  Eat, drink, go to the doctor?  Nope, nope, and nope.  I had a migraine, first in over five years.  My cardiologist believed I would no longer suffer from them after he repaired my heart.  As the years went by, I became a believer.   Last week, I woke up with one, and was terrified.  David pushed his day aside and took care of James  AND made a mad dash to the gallery and back.   He also, understanding my fear of doctors (terror actually), stepped in and made a doctor's appointment for me and then took me there.  Now I've started on my rounds of routine and special tests and visits.   I also am making an effort to take care of myself.  Drink the seltzer down before the bubbles go away.  Shower, wash face, brush teeth, comb hair.  Take vitamins.  All the things I do for James, do for myself.

I know this might sound ridiculous to someone who is not in this position. How could you not drink when you are thirsty?  My concerns are so pushed down that I don't even notice.  I think it is tied to my concerns about mortality.  At first I didn't believe this could be true.  With my stroke, I faced my demise big time.  I am fully aware that death can come to anyone, at any age, at any time.  On paper, I am prepared to die.  We have made special legal arrangements for James.  But in reality?  No one will be able to give James the happy, active, loving life that he has now.  I want him to continue to grow and flourish and I have to be there for that.  Did I think that if I ignored my health, I was ignoring the fact that I am going to die and leave James alone?  I trust God for everything, but my ability to do this is not admirable.  I have no choice.  SO . . . I have to give this up too.  I can't control what will happen.  BUT I sure can get to the doctor and take care of myself on a daily basis, so I will be healthier AND happier for longer, for James, for myself, and for my poor neglected husband!

The Great Outdoors

After the three huge snowstorms and a couple dustings, we have greeted the sudden about-face in the weather - sunny and 60 degrees - with awe and elation!  We had a rental car for a few days, and James rode with a mixed look of wonder and bliss on his face, as wind blew in the open window. The back windows in our little car don't open, so James got quite a treat!  He never even protested when Dad put on is own music (a rare occurrence).

Being able to run around outside must make such a difference in James' life.  This weekend, he was able to independently open the door and run around on the porch.  It must be a great feeling, especially when he has to ask for almost everything. We were at the beach too.  While it was more crowded than usual, the huge sand piles blocking the entryways are still there.  We enjoyed climbing up and over, seeing the top of the fence posts at our ankles!  Later, James refused to play wiffle ball.  He wanted to "stim" with the bat in the trampoline (a new desire that we quickly denied).  Unfortunately, our refusal ended the backyard session that day, as James could not be persuaded or distracted into doing anything else.  If he couldn't use the bat inappropriately, well then, he was going to sob.

Monday is always a rough day for James.  We get up early to make the trek from the beach to school.  My poor worker bee's day doesn't end until after an afternoon Occupational Therapy session. Unfortunately, the center has pushed his appointment back 15 minutes.  No warning or explanation, just a reminder phone call about James' 3:30 appointment.  It didn't dawn on me until we were going to the center that his time is 3:15.  We pick James up at school at 2:30.  Our house is a half an hour away from school and the pediatric sensory gym is about 40 minutes away - meanwhile they are 10 minutes apart.  Our current solution is to drive around for an hour, using some of the time to let James listen to his therapeutic listening program (30 minutes, 2 times a day).  Unfortunately, James, who cannot tell time, starts to get agitated and wants to go to the gym.  We manage to find a parking spot (not readily available at this time), but the damage is already done,  James is a complete agitated MESS.  He takes off his coat, hangs it up, takes off his socks and shoes, stowing them under his chair, gets his communication board and presses "I want" "to jump" and "I want" "to play." Correct and appropriate - but now the therapist is late, talking to the previous mom.  A completely understandable situation but not for James who does not understand why the time was changed or why, when he is doing everything as he is supposed to, he can't go jump on the trampoline.  He is sitting nicely in a chair, waiting and shaking, tears streaming down his face.  I am right in front of him, repeating over and over again how we have to wait.  Luckily another therapist tells James he will take him to jump.  It calms him.  He has a decent - but not great - session.  This gym has recently moved and expanded.  They are in dire need of structure and an office manager.  Instead, they have two co-owners, who are therapists with a full client roster, who micro-manage and rely on freelancers and part-timers.  Someone needs to be accountable and keep things running for them.  I have left phone, email and a written message.  None of which has been received by James' therapist (one of the owners).  I am considering dropping Monday afternoon.  It is getting warm. We can replace the chaotic session with outdoor time, maybe a organized sport?  Why should I have to work so hard to get my kid back from what they destroyed?

This afternoon, the power was cut without warning as the electrical company worked on our block.  Our landlords weren't home to admit them, SO they cut the power, without so much as a note on the door.  James had just started watching his was first movie of the day, and was not pleased by this turn of events.  I waited for about fifteen minutes, jumping through hoops to distract and entertain him.  This was extremely hard because he couldn't listen to music either (I have now sworn to buy emergency batteries for his little CD player).  Wait a minute - I see the workmen breaking down their area.  Are they leaving?  I abandon my child and run outside.  One man launches into an explanation of the problem.  After about five minutes, I stopped him (as politely as I could) and told him I have an autistic child - who I have left alone - who does not understand what no electricity means and is extremely upset. For brevity's sake, please don't explain the problem, tell me how to rectify the situation.  If they can get in the building, they can get my power back up.  Okay, it's after the school bell, and I luckily catch my landlady on the mobile.  She can get home in 40 minutes.  I run and relay the message and the workers say they will wait.  As much as I bitch and moan about my landlords, the husband and wife team really came through for me: she with her speedy return home, and he with his numerous phone calls to get to the root of the problem.  I am humbled by their concern.  My agitated mom "act," (i need a better word as I was not acting!), also helped as, during their work, power was restored to one part of the apartment for James.  Big sigh.  Crisis averted!  Did I mention Dad is gone for another lengthy day and not returning until we are asleep?

Thank goodness more warm weather is predicted tomorrow.  I am pooped and it is only Tuesday!

The "R" Word

I consider myself a fairly informed parent of a special needs kid. In fact, I view my life with James as my profession, on top of just being his mom.  I try to keep up with the latest news and events.  We have a will, created a special needs trust for James, and have legally appointed guardians. James' week is full of much-needed therapy and he attends a small, loving school.  Of course, this involves constantly dealing with many bureaucracies, and I am humble enough to realize that luck figures just as prominently, if not more, than hard work and persistence. That said, after all these years, I was shocked to discover that James could be considered retarded.  Am I so out of touch with reality that I didn't realize that "retarded" was considered a accepted term?  I grew up with the small buses that kids called "tart carts."  We didn't have any special needs kids at our small school and the smaller buses were used in areas that didn't have many kids in attendance.  To me, the term was simply a slur.  I still hear myself use the term on occasion.  I check myself quickly.  I am over forty now and still hopelessly stupid!  One day when James was still stroller bound, I passed the brownstone around the corner where a bunch of special need adults live.  A plaque touted the residence's association with AHRC - the R standing for "retarded."  WOW. I was not shocked because I disliked the term, my view is call my son whatever the hell you want, just please approve his much needed services, therapy and schooling!  Rather, I was shocked because "retarded" was term so ACCEPTED that it was chiseled in a brick wall!
Years later, we now have a push to ban the usage of the word "retarded."  Normally, I am against ANY banning, the whole personal choice/responsibility/accountability/freedom thing (although I must confess to - at first begrudgingly and now openly - loving Bloomberg's cigarette ban).  I still hemmed and hawed about it, even mentioning how I was afraid the very prominent, very public educational/information push on this voluntary ban would take dollars away from actual programs, therapy or schooling for these needy kids (or perhaps away from RESEARCH, however unlikely).  Although this is another topic, I want to mention that  I find it maddening that one can call for a cure for AIDS, Alzheimer's, cancer, diabetes, but not autism. You just get a sad, patronizing look if you mention it aloud: oh desperate mom, don't you know there is no cure?
Anyway, it hit me.  After a ton of facebook posts about the topic, I now defend the ban.  This isn't just a good first step - it is an amazing one.  It is not about curtailing freedoms, it is an issue of respect for other human beings.  I saw an interview with a prominent comic were she defends her use of "retard"in her show.  If she said nothing, I would have defended her usage but hearing her rationalization -  that she knows adults with downs syndrome want to be treated normally, with all the associated jibes and ribbings - now I am appalled!  So the other 99.9% of her audience - who isn't hip to her inclusion of these guys with downs syndrome - will find it funny and cutting edge and brazen of her to use this hot-button word in her act.  And, most likely, a good portion will not only repeat the term, but now use it with renewed conviction.   Through your spoken words are an immediate slur to whomever you are describing, you are also insulting and alienating more in your heart.  When you see my sweet James having lunch in a restaurant - something we have worked years to attain - you will now think "retard."  I am not saying you wouldn't notice his odd behavior or you won't think "something's not right with that kid," rather you'll neatly label him and dismiss him as a person - all because of the continued use of this term.  There are so many schools who actively fight to keep special needs out.  There are so many places we can't go.  Life is isolating for a person with disabilities and acceptance is the first step.  And it's not simply a case of using a "preferred" term, well then what should you call that kid?  He's a person and his name is James.

School Shmool!

Subtracting the snow days, vacation days, and now sick days, James has been at school for FIVE days this month.  And that means missed therapy too.  Yikes! We awoke early on Sunday to find poor James a victim of a nasty stomach bug.  After making a mess of his bed, we snuggled him in ours until it happened again!  Can you believe, after all this upheaval, we succeeded in getting him to sleep a few more hours?  Poor sweetheart.  And poor dad too, who came down with "the plague" a day later!

Life has been rough.  Screaming child whose butt is rubbed raw, who cannot focus for long, who reacts against any 'demands.' Merely suggesting we read a different book elicits yowls of protest.  Still, through all this, I am seeing flashes of progress. James has called me "Mommy," clearly and audibly, several times this week!  Not "om" (without the first "M"), not "Mama," not simply mouthing the word without sound, but MOMMY!  I have waited seven years to hear his sweet voice say my name and I pray I will hear it again and again.  We are also receiving some pretty great unexpected hugs and kisses.  Like a hug around my hips when I am folding laundry or a smack on the lips while we are playing catch! While he was eating fast food in the car, he even put his dad's milkshake between his legs because he wasn't ready to give it back yet BUT wanted to reach into the bag for another french fry!  Amazing problem-solving skills with great dexterity in a moving vehicle! Maybe not for ordinary seven-year olds but PHENOMENAL for my extraordinary James.  I also love that these new strides are not specific learned skills (like puzzles or coloring or writing) but ones he has made up and implemented.

I guess it is safe to say he has officially achieved toddler status! That brings up something else we have been talking a lot about: how old James is - seven - and what does that mean?  I have stopped paying attention to how James is functioning on a 9-month old level for one thing or a two-year-old level for another.  I can't keep track of all the different levels and they are no longer helpful to me in forming my child into a functioning person.  I am not simply ignoring it all because it is sad to see him measured at some super slow level, I just don't care.  Keep records, fine - do whatever to keep those services coming!  I have to focus on James as a person and what we can do to get him to functioning level in life.  Let the board of education get him to perform whatever tricks they need to chart his progress!  Let them worry about his less than pre-schooler abilities.  I need a kid who will pay attention comprehend, respond and interact.  A kid who WANTS to interact! What his strengths are and how I should encourage him to use them.

All this time alone with James, with no school and no therapy, shows me that I have to retool how to  function as James' mom. Sure it was rough.  I secretly sobbed in the bathroom.  I was wrongly impatient.  I snapped at my husband because I internally viewed his business trip as fun free time.  Regardless, it wasn't that bad.  It showed me that I should not rely as much on school and therapy.  During his Early Intervention days, we were clueless on how to deal with James and looked to the therapists for answers.  Now we see that they were educated, but could only provide suggestions, as there are no specific answers.  But for James, I think we, as parents, can.  We can and will find answers for him.  Not so he can magically be brought up to the functioning level of a seven year-old, but so he can be brought up to a functioning level period.  The cart boy at Target does an amazing job.  He retrieves all the carts quickly and wipes them dry.  He covers the ones stacked neatly outside.  He has a job and takes it seriously.  Is he functioning at his age level according to some test?  Undoubtedly not.  But another kid, typically functioning, could not do his job.  This teen's dedication and tenacity is beyond his years.  This is why I don't care.  James is autistic but I will not pay mind to some societal definition of the word.