I Heart Reading

James is letting a little bit out.  I talk up a storm and constantly ask him questions and request his opinions. Unfortunately, he doesn't always respond.  Is it autism? Apraxia? Is he just fed up with task-driven mom?  Lately, he is rather obsessed with reading, before, during and after school time. Non-fiction books, that is.  Or "real" books as he calls them.

Why dolly?  Why the passion for reading?  "Reading helps me to escape from the reality of autism."  Is just sitting and being autistic miserable? "Autism feels like dead inside."  Of course, we move on to reading immediately!  Of course, I want to know more. . .

Another time, when James is in an amiable mood, I question him more.  James?  Why do you love non-fiction books so much? "Real books."  Yes, what you call real books.  "True facts set me free from autism."  In what way? "Dear facts tell me the real world.  World that is too hard for an autistic kid to live in." And, again, we read.

How do I bridge this gulf?  How do I make him see that he is in the real world and he can participate in it?  That in this technological age, he does not have to have the ability to speak or use a pen?  That it is okay to be different.  Age ten is an awesome, exciting, aware stage in his life.  May I have the wisdom and courage and tenacity and patience to successfully bring this child to the next. 

Busy Work

Like in movies, when men are sent to boil  water - aka get out, keep busy and stay out - as their wives give birth, I have come to realize that I, as a mom of a special needs kid, have also been handed a lot of  "busy work." Keep a journal.  Record what they eat.  Keep track of behaviors. Monitor bathroom habits. While all was incredibly useful to me, not one shred of this information was ever requested by doctor, therapist or teacher - even when It was offered carefully annotated and in chronological order,  In fact. the conclusions I made were often held as suspect and often dismissed by "professionals."

Another great challenge was implementing "the schedule." James is on a rigid one.  It's on his iPad.  Funny how his old school claimed James was unable to comprehend a schedule. Why?  Because he got upset at the changes.  Huh?  Ditto with therapy.  James hasn't had a set schedule all year.  So far only two days have not varied.  Why?  Because "paying" (i.e. not Board of Education or insurance cases) get priority now.  It used to be seniority and severity. So i keep a rigid schedule so your easily avoidable changes can be tolerated?  Oh.  I thought it was for times of sickness, accident and emergency. Silly me.  

Like the daily data I faithfully recorded, this schedule we follow - absolutely beneficial - is once again, just to keep us busy.  I see. Data we have found priceless in unlocking our son's mysteries is not significant to your understanding of his conditions.  And his schedule, (which has changed his life and enabled great awareness), is unimportant for neuro-normal professionals (who can handle change with aplomb), to follow.  

I get it. 

Instead of dealing with the aftermath of yet another extreme change in today's services, James and I completely altered his Friday schedule.  No therapy, no school books, just a visit to see the dinosaurs.  Please don't tell James it actually was school because he "thought the museum was sweet."  But never mind, I forgot, you don't really believe he can read or communicate. 

My Frankenstein

Good News?  James actively uses his iPad. I have to be alert and charge it every chance I can so it doesn't run out of batteries.  He uses it alone in his room, looking at the images we have added to his communication application (ProLoQuo2Go) or playing with the books or educational games. It is awesome to see. He still listens to music and reads physical books, but has to have this iPad close by.  When we are in "school," James not only responds to my questions, he often offers unsolicited comments, which are my favorite.   Unfortunately, James still holds my pointer finger for support, stabilization, and/or comfort.  A recent push by his therapists and I to break this dependence, was met by an almost week-long, refusal to type.  I think slow and steady pull back is best.  Regardless, this Friday, James' comment was not well-received, especially considering i have to "help" this kid type. . .

Needless to say, this was awful.  After a lengthy time out,  the lovely phrase was repeated a third time.  Now, not only was he in his room but every toy, book, movie, blanket and pillow was removed.  Bizarrely, it was easy.  As he sobbed, I took the opportunity to clean up some dust bunnies I had never seen before.  Then I explained to him why we do school at home, why everything was difficult for him, and why he had to work harder than everyone else.  I reminded him how vitally important communication was for him.   It took an afternoon.  But James got it.  He came back. He told me he was ready to learn.  He apologized and asked me to "forget" what he said, that he was being mean.  Then we re-started school.  His next "spontaneous" comment?  "Math looks hard but is easy once you open up your mind."  Sigh.  He's awesome!

I try and remind myself (as I continually pray for patience and guidance), that I created this monster, both the good and the bad.

Three Strikes? Down But Not Out

It has been months.  I wasn't sure I could ever find the time to write, again.  Busy we have been!

It all started way back in September, when the Board of Education changed the way they were assigning related services for special need students. According to the BOE, it always should have been done differently, so no prior notice was necessary.  Huh?  So James started school without services because the Board of Education decided to bid out ALL the services in NYC and consequently, the winning agency became overwhelmed.  Go figure. We were supposed to get a least a phone call.  Weeks grew into a month without anything, no letter, no call, no services.  Of course the "cessation" came after the three week summer break.  Can you imagine what this means to a child who has been getting consistent services since he was two?  Now think of the THOUSANDS of children who were affected!  My kid?  Well, most noticeably, James "forgot" how to use the toilet.   At the advice of a cracker-jack mom, we put in for a Pendency Hearing to get his services reinstated while we waited for an an Impartial Hearing to get some official action.  The Board of Education was found to be not in compliance and we got his services reinstated until the Impartial Hearing.  Then, as soon as I submit all my evidence for the case, I am told that magically everything is closed.  James has all of his services, as usual.  What?  I dropped the case.  We are okay until next year.

Blow two struck with Super Storm Sandy.  We lost our house and it all got worse.  Now James was soiling his pants.  He developed a morbid fear of water.  It "deaded" his house. Daddy had to go to sleep with him AND the bright, overhead light has to be on.  His confidence was shaken and he often cowers, doubting himself.  Because I had no idea how or when the house will be fixed, James accused me of "keeping secrets" from him.  When David went to work, James would type: "Daddy is dead."  Right now the house sits gutted (as every house in the neighborhood).  Construction cannot proceed as FEMA has changed the flood advisory in our neighborhood and 9 foot elevation is suggested.  So we stop and asked for estimates for a raise and a rebuild.  It is incredibly costly.  Do we raze the whole thing?  ICC grants are available but FEMA's report is preliminary and not to be finalized until at least August.  So we sit until August?  MADDENING.  I can't handle anymore nightmares.  And I mean it literally.  Sleeping is not fun for me or James.  And David pretends.

Oh, and guess what?  James' Medicaid was canceled back in August.  I am told this in November?  You have to reapply.  Huh? Many calls and hours later (while my son stims),  I ask for another Impartial Hearing.  Weeks later, I get a notice that my request has been received. That was Thanksgiving.  James' Medicaid Service Coordinator suggests I go into Manhattan personally.   No, I am not going.  I have been there.  You sit for hours.  How long am I going to sit and how many places will I have to go and how many people will I re-explain to, without an appointment?  All this, with a non-verbal autistic child in tow. . . . to be told when to come back for an official appointment when the issue will be addressed?  Of course, my husband could take off a day of work. . .   Of course, I could drive to my in-laws in the next state, drop James off and return. . .   I use Medicaid to help.  This is not helping.  After recent events, James needs a rigid structure and not a chaotic schedule.

SO. . .we did nothing.  Partially because while James was hospitalized. .  . for a febrile seizure? He's too old.  For a random seizure?  But the EEG and MRI are normal.  No seizure but horrendous reaction to a sudden and extremely high temperature?  He is okay now and we watch and pray.

Meanwhile, the insurance company about-faced and all gave us all the funds, instead of paying off our mortgage first.  This in no small part to the countless phone calls and personal meetings that David somehow found the time and strength for. Shockingly after all this time, we have a serious, let's-get-going, meeting with our builder after Easter!  We have decided not to wait on FEMA but go with the new "suggestions."  And just as suddenly, we have an appointment at Medicaid to discuss the cancellation - in Brooklyn yet.  And while James isn't completely back to using the toilet independently, it is getting better.  Almost in all ways, but not yet.  James keeps asking why God hates him.  We don't do anything "small" around here.