Questions and comments

I never mind it at all when people ask me questions about Nick and his Autism.  I'd very much rather have them do that than for them to jump to conclusions about any behaviors he's exhibiting in public or anything like that.  The more people know about Autism and realize just how common it is and how so many people have it the more acceptance there should be about it.  That's something I hope for in any case.

I've given it some thought and here are some of the questions/comments that have been addressed to me that have stood out over the years:

- "Does he allow people to touch him?"   This one has been asked by hairdressers, doctors, and respite workers who are about to work with Nick for the first time.  It's really a good  and fair question and definitely one that I would either ask or think to ask if I was dealing with a child on the spectrum that I don't know.  Nick is a very touchy-feely kid and loves to be touched.  If it's someone who is cutting his hair or giving him a medical exam they may not see that side of him, but it's really there.  He loves to give hugs and kisses and to be on the receiving end of those as well.  He's not one who is OK with just anyone doing that if he doesn't know them but if he knows and cares about you he's all for it.  Often he needs to be prompted by me to do that when we're leaving a family gathering or saying goodbye to a friend after a visit but if he didn't want to do it he'd let me know, trust me on that.  I'm the lucky person who gets the lion's share of his kisses and love and I cannot say enough about how much I love that.  He's not able to tell me that he loves me so that sweet affection he shows me constantly is his way of saying those words and letting me know.  It's pure joy for me, plain and simple.

-"When did you know he was autistic?"   Nick wasn't officially diagnosed until May 2005 but I had a feeling that something was, well, "off" about him for a while leading up to that.  At his two year check up appointment back in August the previous year I mentioned to his pediatrician that I was worried that his speech wasn't progressing the way I had thought that it should.  That was all that I had really noticed at the time that was different about him.  Others noticed more and so did the doctor.  She told me that if he didn't start putting two words together by the time he was 2 1/2 that she wanted me to bring him back in.  I failed to notice his lack of eye contact, reluctance to play with others or practice pretend play and a few other things that people like his babysitter at the time saw.  Now I curse myself for what seems like ignorance but I am sure that some of that was me being in denial and hoping whatever was different about my boy was something as common as a speech delay.  His father talked late and when I expressed my concern about Nick doing that I remember people telling me that boys tend to begin talking later than girls and that Einstein didn't talk until he was 3 years old or something.    As time went on into fall and winter of 2004/early 2005 I began to get scared.  In April I contacted the local regional center and set up an appointment to have him evaluated by a speech therapist.  That really was one of the darkest days that I can ever remember.  After a two hour evaluation she concluded that my son who was 2 years and 8 months at that point had the speech ability and cognitive understanding level of a 9 month old.  I didn't know what to say so I just sat there and cried my eyes out.  The speech therapist was wonderful and very understanding.  She encouraged me to follow up on having him seen by a developmental specialist and have him officially diagnosed so he can get the services that he needs.  We were fast tracked into the system and put on a waiting list for in-home therapy.  I do feel a certain level of guilt that the wool that I pulled over my own eyes didn't allow me to see the signs that quite a few other people saw and I am sure that will always be there.  It's something that I have to live with and I am really grateful for the early intervention services he received that helped him in so many ways. 

- "Is he ever violent with you or others?"  On occasion, yes, he has been.  With me he was rough towards  me during the three periods of time that I was the most stressed, sad, and distracted about my mom's failing health.  My mom was diagnosed with bladder cancer in 2006 and that was the first time he showed any tendency to physically hurt me.  Once treatments began for her and I relaxed and held out hope that she was going to be okay he began to revert back to his normal sweet self with me.  A year later her cancer returned and I was a wreck once again.   As if on cue he began to lash out towards me once more.  I tried not to show my sadness or signs of stress around him but he's far too in tuned with me not to notice.  When she passed in December 2008 it began again and was by far the longest lasting and the hardest to take.  I know he was sad and confused and couldn't articulate what he was feeling.  Plus I had the very distinct feeling he was mad at me for not taking him to see her too.  He'd show others her picture and say "please" as if he thought that someone else would take him to see her and do what I wouldn't, or in this case couldn't, do.  It was a rough time for all of us and even harder on him because of his inability to ask the tons of questions children about about death.

As far as him doing that to other people he emerged as THE problem child in school at one point and began to lash out at his fellow classmates, teacher, and aides. That happened during a brief and odd adjustment period he went through at the beginning of this past school year.  It came out of nowhere and surprised everyone, especially me.  Everyone who knows him was confused by that as well.. that's not his usual behavior at all.  His teacher and I began to correspond on a nearly daily basis and we tried all weapons in our arsenals to get him to stop.  He'd lose his television and iPad privileges at home and wouldn't be allowed access to his favorite toys, games, or his walking time while at school.  We worked in tandem, his teacher and I, to let him know that there will be consequences for that type of behavior in any setting.  What began was a period where he'd lash out at someone and get into trouble for it.  He'd go a day or two without his favorite things at home and at school and seem to learn from it and then do it again a week or so later.  This went on for over two months until his November break from school.  When he went back all of that behavior had stopped and he hasn't done it since except for one day a few weeks ago. 

- "Will he ever talk?"    This, obviously, is the hardest one to answer.  I cannot predict what's going to happen for him in the future.  I have felt a certain amount of discouragement that he hasn't made a lot of progress in this area, to be honest.  I'd love for him to speak more and feel like he has a lot to say but just lacks the ability to bring those words forth.  His teacher  is able to get more words out of him at school than we do at home and that is frustrating as all get out.  I think he believes that he needs to talk more there and we just understand what he needs at home so why bother.  We really do our best to get words out of him and applaud him whenever he says something that's not in his little repertoire of words. I cannot let myself lose hope that he'll be able to express himself more as he gets older.  Do I think he'll talk like a typically developed person or one with high-functioning Autism?  No.  Do I care?  Yes, but I'll accept whatever vocal level he gets to and we'll make due.  That's really all you can do.  I'm not a huge Bruce Springsteen fan but one lyric from a song of his stands out when I think of how I feel about Nick's differing abilities.  It's from his song "Tunnel of Love" and he sings about how you've got to learn to live with what you can't rise above.   I don't have a magic wand to change anything and learning to accept and live with - but not give up hope that things will change- is really all you can do.

- "Well,  he doesn't look autistic!"    Oh boy.. I saved my favorite for the last.  This comment bugs me like you wouldn't believe.  I haven't had this said to me in a long time but I remember thinking each time someone said that that the person who was speaking really didn't seem to know their ass from a hole in the ground.  Autism isn't like Down's syndrome where that is more noticeable to people.  Millions of people are on the spectrum and it isn't something that is discernible by any physical characteristics.  Autistic people look like everyone else.  They blend in physically for the most part because they're not that much different in looks than their typically developed counterparts.  They can show behaviors that set them apart from others but nothing about how they look screams Autism.  Some of the most beautiful children I've ever seen have been autistic.  They have the sweetest faces with the most contagious smiles.  If there is a next time that anyone does say this to me I'll ask them to Google "What autism looks like" so they can see for themselves that there isn't a difference.  Or tell them to look around them.  With the statistics being as high as they are I am quite certain they come into contact with someone on the spectrum often.  They may be high-functioning or have classic Autism, it doesn't matter.. they look like individuals like we all do.