Sorry, but I hate it

It's a beautiful sunny day outside.  To any other area most likely nice, but not quite the big deal it is here in Syracuse.  After all it was just -7° just two days ago and now it's in the 40s. This, my folks, is a  big deal.

Zach cried and screamed for almost 60 minutes straight this afternoon. It was a "good day" at school.  He likewise had a "good day" at the doctors where he goes Monday through Friday at a clinic immediately after school. And then he came home.

A "good day" - a good chunk of us special needs parents probably cringe at these words.  They are vague and  yet sound so positive, don't they?  Most of us figure out sooner or later that what they meant is not that our child progressed or excelled at school, but rather, they didn't give the teacher a hard time.  Sometimes, a good teacher who is conscientious about their job will actually mean "good day" from the perspective of the child and mean, despite any behaviors, the child rose to some challenges and got through them.  Gauging what a teacher means by saying "good day"is part of the lovely complex nature of raising a child with autism.

We are lucky that this year, for the first time, we get a lot more communication about Zach's day.  I will never take that for granted.  We have seen noticeable progress with Zach - the kind of progress that we don't have to take data for because it is obvious.   Yet, for some things, we still need that information.  Zach's aid is such a blessing.

There is a contingent of those who have autism, most likely Aspergers, who are adamant about not calling autism something that is medical.  They are offended that people grieve continually for their autistic children.  They call parents who attempt to treat their children's symptoms using alternative medicine or behavioral techniques abusive.   I struggle with accepting all these group's notions.  Indeed, autism is a spectrum - variant from person to person.  A snowflake disorder, where no two individuals present exactly the same symptoms.  There are those who can more seamlessly meld into the rest of society - maybe not altogether unnoticeable, but well enough that the general population make few waves.  Then there are those who people would rather not see, try to ignore, and will evoke commentary on the order of: "should be sent some where". 

 They are all part of the same overarching diagnosis, yet so different with needs so varied.  One autism activist goes as far as to say that:

It is not possible to separate the person from the autism.

And:

Therefore, when parents say,

"I wish my child did not have autism,"

what they're really saying is,

"I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead."

From Jim Sinclair, Don't Mourn for Us, "Our Voice," the newsletter of  Autism Network International, Volume 1, Number 3, 1993

 I am afraid that Mr. Sinclair and I are going to have to agree to disagree on this one.  My son is way more than autism.  I also am wholeheartedly glad to have him in my life.   Perhaps some of this derives from the fact that Zach for the first approximate year and a half of life, did not show signs of any autism.  In fact, he lost his skills - his eye contact, language, pretend play.  He regressed into his autism - as roughly 1/3 of those diagnosed do.  
........
My son began crying over 2 weeks ago, gesturing to his head when asked where it hurts and what hurts.  Yes, we have run programs to teach him to identify body parts and also to give him mechanisms and manipulatives to communicate his needs with.  Not everything has a special education solution.  His inconsolable crying for hours at a time, especially when in the middle of the night, has to be one of the hardest features of raising him.  He is suffering, and his autism plays a huge part in not alleviating if not directly causing his suffering.  When there is suffering, there is pain.  When there is pain, we attempt to alleviate it using a scientific/medical model.  We spent the better part of 2 days addressing the source of his pain with doctors and dentists.  The answer? Unknown.  The decisions? Treat ear infection, swimmers ear, and possible abscess tooth. (It could also be something neurological or a migraine - but how could we know?) 

Did I mention how he cried at these appointments? Big hot steamy tears off his sweet face as he at times flailed, other times gestured for me to hold him, and yet at others grasped my hands.  Witnessing his agony and torment?  Gut-wrenching, and therefore exhausting. One literally has to learn to not respond the natural way a parent would in order to do the right thing - and what is the right thing? When there are no answers, the only consolation I can give him is to be there, and I can not let my stress show.  That often means checking out on my own emotions.  Throughout sometimes hours of this, in order to let him know that I care, and that I am there for him, if he happens to figure out what he needs and can relay that information to me, I am there to respond.  Otherwise, he is not alone and that is all that can be done for the moment, the best there is. Oh - communication issues due to autism.  Torture.

Yes, it is at these times that I truly hate autism.  This is not the same as the grief one feels because of "shattered dreams" this is knowing this disorder has so much consequence to HIM, not me. For one to tell me that my care for my child and not wanting a child to suffer makes me in denial of loving him because I don't acknowledge him as autistic first, well, I take issue with that.  I will always love my son as the human he is, filled with fear, desire, pain, and joy like his neurotypical counterparts. 

If you do not suffer because of your autism, than I suggest that you not tell me that my son does not.  Projecting your experience with it is a natural human reaction - us humans are notorious for this lack of perspective even when not autistic.  But there are other people with autism who will talk about the suffering - the pain, the need to strike at themselves, the alienation, the exhaustion.  Not all believe it is just some alien form of being human, nor do they view it as a personality trait.  It has manifested itself as something much more intolerant, requiring support way more than understanding.  For these people, we must look to ways to alleviate their suffering.

And then there is the Catch-22.  We are scheduled to have a weekend away - not far, just a 20 minute drive where there will be no children, or dogs, or autism, or doctors, or phones ringing off the hook.  Steve and I are to connect again, and revitalize.  That means it goes against my being there for Zach during a particular time of need.  This has been scheduled for months.  It tooks months to find someone willing to stay with our kids.   

I learned a long time ago, that one of the recurring troubles in my life was involving timing, and ours usually stinks.  So for the first time in 6 years, Steve and I were to get away for an overnight and not be selfish, but to do self care, and a dilemma is faced again. Frickin autism.