Offer It Up

The daily bane of a Mom of a special needs kid is unsolicited advice. Being a stay-at-home invites it even more, because regardless of one's past educational and professional accomplishments, you now have a small brain and even less ability to feel. "As long it is your choice not to have a career."  Seriously? How do I even answer that? Anyone thinks they can put their two cents in, because, hey, they raised five kids. . . their cousin twice removed has autism. . . because they are a teacher. . . a doctor. . . a lawyer. Really? I am wrong to question the huge, double dosage of medication you are about to give my child because your hospital pharmacist is top notch? Yes my nutso friend - who saved her child's life here - is guilty of being a helicopter mom.  It is best - not to home-school to my non-verbal kid - but to pump him with drugs and send him to an inappropriate school, so he becomes resigned to living in fear among violence and abuse because that is his future as an adult?  Cool.  Now I can get my nails done instead of anxiously chewing them off as I strive to better his life!  "Your kid just doesn't want to wear a hat" is the reason for the sidewalk meltdown?!  There I go again.  Pushy Mom, forcing fashion choices on my kid! Thank you Mister!  An all-organic, gluten-free, casein-free diet would be best?  Wow!  I never ever thought of changing the food!  You think I'd benefit from counseling? What a novel idea, I'll schedule it right after my overdue dental, gynecological, and optical exams while my awesome nanny watches the home front! And hey . . . thanks for the empty advice and non-offer to babysit, I know it means you care.  "You have to be more patient and willing to repeat yourself to get him to talk."  Yes, true, his apraxia is my fault because I didn't spend enough time parenting.  Usually I can take the constant barrage in stride.  Today I had it. I was given a stern reminder that "it is about time you teach him to . . ."  My bad!  Autism and global apraxia affecting his motor skills be damned!  You really think James isn't working hard DAILY on freaking things you take for granted?!  With me and with a team of therapists?  That the reason James can't do so many things is because I haven't TAUGHT him yet?  Oh, you didn't mean it that way?  You were only trying to help?  I give up. 

Why am i so unhappy?

The very cool part about being James' teacher is that I can effortlessly incorporate his daily life into our lessons.  For instance, writing in his "book," (aka journal) allows me to sneak in school stuff like practice making letters, the use of capitals versus small letters, punctuation, and sentence structure.  Meanwhile I have assured him that he can write anything here, even curse words, without getting in trouble. These are his raw feelings and he should let it all out!  What his "diary" also lets me see, is James' beautiful mind at work.  What a joy, what an honor, what a freaking privilege it is to be this kid's mom, let alone his teacher.  Warning: After writing this super sad entry, James typed on his iPad, "It is really ok Mommy."  And it was.

Why am I so unhappy? Mommy wishes I could be happy always. Why am I so unhappy? Pretty sure it is because i am autistic. Why am I so unhappy? I am pretty [sure] it is because i am not real. Why am I so hard to please? I am not a good boy everyday. Why am I so hard to understand? It is because i can't talk. Why am I so hard on Mommy? 

Mourning

I recently read an article penned by a special needs mom.  In passing, she mentioned being sad that her hopes and dreams for her daughter's future had been dashed.  Although it wasn't the point of her piece, it really resonated with me.  I remember, way back, thinking about this and telling myself I was a selfish idiot because who cares about hopes or dreams when there's a needy kid right in front of me.  A relative even chastised me about my selfishness: get over it and move on.  So I squirreled it away.  I read every book, every article, every bit of information, scientific fact or utter fantasy. . . and kinda ignored my kid.  I mean I was still there for James, challenging and caring for him, but I was actually numb inside.  Cure him.  Make him better. Make him function.  Push. Try harder.  Of course it didn't work. If only Autism worked like that!  Eventually I started to wonder if it might be best if we weren't around anymore.  Outwardly, I was awesome super mommy, but I knew I wasn't.  By not letting myself mourn, I dried up inside.  By not acknowledging my needs, I started to not to have any.  Soon I didn't deserve any. Suicide/murder was actually the most selfless act.  The best thing to do to free my husband.  So what changed?  Told my guy. Talked to James' psychologist.  Cried, screamed, cursed God.  It was pretty bad.  Did the situation get better? Not for years.  But I did.  All because I let myself feel and be human, be alive.  By letting myself be the needy one, I truly became what James needed.  Special needs parents don't really talk about this tremendous sadness.  I guess we just don't have the time to talk about our feelings, but that's okay, just letting ourselves have them is paramount.

forever (James' take)

Five days after that mom approached me, trying to recruit us for her family-run group home, James "said" to me (on his iPad typing screen): "Mommy how come that lady talked to you about that stuff?"  After we had a talk, James wanted to hand-write in his "book" aka diary.  It took awhile but he got to what was bothering him.  Two notes, by "water," James means the ocean, and to him, much to my chagrin, "real kids" are neuro-normal children:

Mommy is mean and she isn't nice. Why can't she just take me to the water? Why can't we just go and not do school? Why can't we just have fun all the time like real kids who can talk and be wild? Why can't I be normal too and happy and loved and content? Mommy makes me do school everyday except when Daddy is home or if I am sick, but I want more fun and less work.  Why can't I just be normal kid and not autistic one like everyone else? Why am I different inside and not real to the world? When will I be free? When will I be real? When will I be loved?  When will I be water? When will I be water? When will I be water? Water is to be respected. Why can't I be respected like that? Why can't I be powerful like water? Why can't I be mommy or daddy or Kayla or Kathy? Why am I James, the autistic kid who can't talk or make friends?  What is the secret to being real, being normal? Why can't I just be a kid who can't talk?  Why would anyone want to be me, the autistic kid who is friendless and not real? Why would you want to be my friend when I can't be comfortable in my own skin? What is my good true real mommy going to do with me when she dies and I am alone? Who will love me then? Why am I a problem to be taken care of or gotten rid of? Why can't I grow up and be my own man and take care of myself and not be a big baby? Mommy wants me to control my autism rather than my autism controlling me.  Why can't I be normal? Why isn't life fair? What could one do to win? What will you do to help? Why can't we be free? Why isn't the water really cleansing? Are we not water inside? Why can't I just grow up sweet and happy?

(and then a rather angry abstract happened)

forever

Recently, another mom asked me about my plans for James' future.  I don't know, I replied.  Well, he's eleven now, you have to think about it!  I let her go on about how bad group homes were, the abuse and neglect.  She had a dream plan to create a small, family-run group home.  While it sounded great, the more she went on, the more isolating it seemed.  It sounded so final.  It sounded hopeless.  Just another version of an institution.  Then, James and I got stuck on the West Side Highway, extending our trip to almost three hours.  While he happily listened to CBS 101.1 FM (his current fave), I just thought and stewed and thought:  NO!!!  I yelled at her, in my head hours later.   I think of James' future non-stop.  But in no way am I limiting it now.  I was told he should be potty trained by age 5 or it would never happen.  I was told non-verbal usually can't comprehend much language. I was told institutionalizing him early would be "best" and I should "move on with my life."  I was told he could never use an iPad because he couldn't keep a physical schedule, let alone comprehend it.  Guess what?  In our case, all this advice turned out to be bunk.  What worked?  Another mom encouraging me to get ProLoQuo2Go for James because she knew him and could see that it could benefit him as it did her daughter.  Another mom who is also a speech therapist watching him and realizing he could read and then asking him to type a word in answer to a question, and he did and never stopped.  Who potty trained him?  After our exhaustive efforts?  He did.  He just decided it was time. . . and that time was long after five years of age!  Make all the plans you want in life.  Plans are good.  I am a control freak, I know, I make them non-stop.  To-do list.  Shopping list. Week's menu.  School Itinerary.  Therapy schedule.  But then life steps in.  Someone gets sick.  Car breaks down.  You have a cerebral stroke.  Hurricane destroys your home.  Do your darndest, but at some point, life will step in and alter your reality. As for someone else's life?  Who knows?  We can sketch an outline, make suggestions, present options, be encouraging.  But James' life is his and he is going to make his own freaking future decisions.  

I hate the Flood (from 11/2012, was too painful to post)

The last six months have been . . . rough.?

The Board of Education changed the way it handled special services (Occupational, Physical and Speech therapy) without notice to the parents.  It was a joke.  "It's not a change but we've never implemented it before."  So you realize that you are making a CHANGE in procedure right?  Ah, legal semantics! Shockingly (not), the new, lowest-bid company was overwhelmed and we had no services.  After over a month of phone calls, letters, emails, faxes and court appearances, we got James' services reinstated (and our settlement included a no fault clause to the BOE).  Of course, James had started having toilet issues (aka peeing his pants).  Luckily, we stayed at the shore and filled our days with gorgeous empty beaches and school on the porch.

Just as we got our guy back on track, Superstorm Sandy came along and "deaded our beach house" (James' apt words).  Thank God we left that Monday morning.  The wind had a high-pitched eerie quality that it had at the peak of the previous hurricane and this storm was hours away.  Not right.  We packed up the laundry, James' movies, our precious electronics and hit the parkway.  There wasn't a soul on the road.  As we sat at the mouth of the Holland Tunnel, Bloomberg announced its closure, but luckily squeaked through.  Then we got to the apartment, unpacked, and  . . . went out to lunch.  Brooklyn was alive and open and surreally calm.  We made the right decision.  Never lost power or heat or were in danger while our beach neighborhood was under five feet of water.  Our neighbors lost their homes.  We lost everything but the shell of the house.  Our happy community, three months later, sits vacant, lightless and empty while insurance companies drag their feet and FEMA hems and haws about new regulations. Rebuild!  No wait, not unless you do this.  Oh yes, and this! And we will change the flood map too.  Here's a preliminary but we won't finalize until August but it means that raising the house is, pretty much, a must.  Do something but we can't help until the reports are final . . .Okay.  So my kid is terrified of water now.  Every so often, seemingly out of no where, he sobs for his toys, his seashells, his home.  James also has to sleep with the lights on and Daddy HAS to be there.  When Daddy doesn't come home at exactly the right minute: "Daddy is dead."  And he is peeing EVERYWHERE again.  Our poor, sensitive sweetheart,  Meanwhile, we hurry up and gut the house . . .and it now sits and rots. No money.  No guidance.  No hope.  James needs answers and because I have no idea, he assumes I am "keeping secrets" from him.

Did I mention his Medicaid was cancelled . . . back in August? All word of mouth through his coordinator.  Tried to call but his ID number is inactive and can get no information.  A live operator told me I can reapply.  Could you explain when/how/why James was cancelled?  Whatever.  Instead I applied for a hearing and it was received.  Now, once again, nothing and no one has heard of me or my useless notices and confirmation numbers.  Why don't you reapply? And our government is hurting financially.  I wonder why.  Genius all around.  James' coordinator recommended I go to Manhattan and sit in their office until I get answers.  Cut me a break.  Enough.  Neurologist and dentist were lovely but did not help us, diagnose James or even successfully clean his teeth.  The psychologist recommended he be put on anxiety drugs to calm him and inure against the violence in his classroom.  You see, unfortunately, abusive behavior would be his future and I am hurting him by teaching him to communicate and expect more from life.  Consider us cancelled.  That is what they wanted, right?

That said (and it is a lot), James can read, type, communicate, add, skip count, draw, paint, cut and paste.  He knows what money is and what it represents.  He helps me shop and attempts to prepare ingredients for our meals.  He has expressed his love for the eight year old next door but who will never like him because he can't talk. He considers talking people "real."  He "tells" me all this!  James rules and regardless of all this adversity, he is not going back into the dark.  He doesn't even want to be there anymore.  He wants to be here, in the world, autistic and non-verbal, and in the thick of the action!

Dead

As far as James has come, as much as he has told me, my son is still a mystery to me. Autism is brutal and unfair. It keeps him so isolated from life - even in the midst of a chaotic birthday party. I love the iPad and James' communication app (ProLoQuo2Go), but sometimes I worry about the world it has opened up.

James calls typically developing children, "real kids" and he is not. According to James, he is an "autistic monster." He is actually afraid of these kids when they are rough-housing and chaotic. James is quite literal and he does not understand fake fighting. He cannot comprehend violence. It terrifies him.

I think about the advice I have been given by a few medical professionals: to heavily medicate him, to "institutionalize" him, to limit his exposure to the world, to "get on" with my life. . . Even James has told me to "forget" him. Were they - to some extent - right? Would James be happier?

QAnd then it hits me.  Quickly.  Of course not. James would still be a living, breathing human being, but completely trapped in his own head.  He would be even more frustrated and miserable because he would unable to communicate at all. And then, what would happen? Would he turn violent? Would he shut down? There is a sweet spot in hell for these so-called professionals.

But unfortunately, they are not the only ones who segregate my son. Some therapists do it. They think they can alter his schedule without notice and believe it be acceptable. Some relatives do it, horribly shunning us, or subtly by talking at him (loudly as if he was hard of hearing), then turning and giving attention to the kids who can give them instant feed-back.  Some friends do it by shying away because our life is incomprehensible. Some strangers do it by gawking in horror at his manifestations, or even in curiosity, asking questions as if he isn't standing there.

Just because James can't talk doesn't mean he can't hear, can't think, or can't feel. He is listening and he understands.  Just because he doesn't know how to play correctly, doesn't mean he doesn't want to try.  Just because he has autism, doesn't mean he is some clinical science experiment.  James is a real boy, my boy. And I am not giving up.

Forget That

So we tried it: the after school activity!  After trying to find the right teacher or coach, and a group of kids at the roughly appropriate skill/age level, I thought we found a match.  Dance with girls.  The kid is girl-crazy. Valentine's Day was rough. James found out that the love of his life - his Occupational Therapist - had a boyfriend.  No matter that she was almost 18 years older than him.  He was scared her paramour was going to beat him up.  So his over the top reaction (after many tears) was to CANCEL the day.  "How can I meet girls?  You met Daddy in church."  Cool, let's go prowling Sunday mass for chicks.  Sigh. I suggested a dance class specifically designed for special needs kids.  There were all girls, roughly age ten, and one other boy. Day one was tough, but we muscled through. Next week was different.  Obviously the first class catered to James.  I felt like an idiot.  Class was fast paced.  Everyone lined up in size order with tall James in the back.  Not a great placement for paying attention.  Why couldn't they be lined up across?  Before I could make a suggestion, the steps were demonstrated, one, two, three, four, five: do it, one at a time across the room.  James got the first step down and they were on the last.  The girls were blowing past him in line because he was slow.  One banged in to him and he was pushed him into a column.  He started crying.  She recoiled.  He noticed and cried harder.  Another girl sat down with her hands over her ears.  Now it was time for individual free-form.  Um, no.  As we sat and waited his "turn," I tried to get James to stop crying.  "I am not louder than the music.  Why can't she put on headphones?  That's what I have to do" he wrote of the noise-bothered gal.

Next it was time to partner up.  The girl who backed away from James earlier ran when she realized she was next to him.  He was now inconsolable.  "She thinks I am a monster."  It was a fiasco on 15 levels.  It was too advanced.  I found these girls had been taking dance for 3 years.  And despite the class being offered at his sensory gym, it was not for special needs kids.  I am not saying they didn't have issues but they could talk and move and walk down the street alone.  We went home and James cried for two hours.  It was now my fault.  "How could you do that to me?" was the constant question.  I thought we got through it.  I thought the night was normal.  I didn't think anything of his going to bed early, either. It was a rough day!  James then proceeded to very quietly and secretly tear the bedroom apart, specifically my possessions.  If it was Daddy's it was untouched.  His act was intention and horrendous and horrible.  Unfortunately, the woman who doesn't yell, doesn't get upset, doesn't let him ruffle her, lost it.  Boy, did I put the fear of God into him.  The next day he wrote all about me in his "book."  "Mommy is not a good mommy.  Mommy is not my friend. . . ."   Then I went over his punctuation, spelling and sentence structure.  It flabbergasted him.  I said nothing about the content but I apologized, not for being angry, but for my reaction.  It was wrong.  And then low and behold, he apologized.  And then life was again good.  Thank God.  

Don't Say It

That is James' latest heartbreaking, profound, and shockingly perceptive statement.  I was about to say the word "autistic." Okay.  So I proceeded to list alternate, acceptable terms for his troubles. You're non-verbal but can understand?  Yes. You have motor skill deficiences?  Nod.  And sensory issues?  Check. Exhibit self-stimulatory behavior?  Yes.  Sometimes have a hard time regulating your body?  Big nod.  Oh, and you are apraxic (hinders speech and motor skills)!  But why can't I use that word James?  "Because people think we are stupid."

Do Or Die

I have complained recently about how James' thinks, as Mommy, I am his slave.  I have gotten some perspective and advice from Moms with normally developing kids or with kids who can function in society. And I need it!  I am suddenly at this new life stage after being stuck in an endless loop of the toddler-years.  It is just different than their well-meant, kind words suggest.  I wanted to say "BUT". . . but I didn't, in fear of alienating even more people. Trouble is, I can't stop dwelling on those buts. . .  You see, I had no choice but to immerse myself into James' autistic world to pull him out.  No one else would, or could to the extent he needed it. Oh, I have read about wonderful therapists - we've had some - but it all comes down to money.  If we had it, James' care would be uncomparable.  So Mom - and Dad to a necessary, lesser extent due to making a living for us - dove in. We learned to be a team, to trust one another and communicate without words.  We pushed through not sleeping at night, toilet training, constipation, tantrums, writing, reading and addition.  These milestones took several years not days, weeks or even months. So, when I talk of explaining to my son that I am my own person, allowed to go to the bathroom, to eat, to not be 24/7 on James duty. . . it is not a black and white topic.  For 11 years, I have been THE conduate to the world for him.  It isn't some cute-sie "hard" lesson that I am teaching my child, that mommy is a person too. You see, at age 11, James is beginning to communicate with the outside world.  Can you comprehend the magnitude of such an accomplishment?!  Until this point, only one person in your life has consistently understood you?  Knew your strengths and weaknesses?  Talked to you, not at you, let alone acknowledged your existence?  See, regardless of how insignificant it might seem to a layman, James' current level of increased communication is astounding.  He typed for no one consistently - except me - until this past fall.  Undoubtedly, it had to do with therapists who did not believe he could understand as well as he could (that's another rant).  I believe James is now feeling me scale back.  I wouldn't say it's hard, that is our normal functioning level.  Rather, this next step, of getting James to be (and, most importantly, want to be) self-reliant and independent, is excruciatingly painful. In our special case, it is a sink-or-swim situation.  We will die before James and he will be alone.  That's the bottom line.  James must express his needs, wants, opinions.  He will someday live in a facility, where he will be exposed to various forms of abuse.  His communication is crucial for his future well-being, and perhaps even survival.  This is not about me and my life, my wants, my hopes, dreams, or desires. How petty and small such things seem and I am sorry and, honestly, quite envious, that most can't understand.  James IS my life's grand fucking art project.  My experiences have led me here and my future success and fullfillment in life is based solely on that and that endeavor alone.