Category Archives: Autism Spectrum Disorder

Socializing is a Bitch


The girl is alone on the porch and my son wants to go outside and play with her.  I say yes and he scrambles to get his sneakers on and runs outside.  He is making conversation with her and I am amazed.  I am elated that he even wants to go outside.  Those social skills groups are working miracles.  This good feeling was doomed to be short-lived, however.

She was waiting for two boys to arrive for a play date.  One of them comes and she is engaged with him.  My son tries to keep her attention and the bad habits flare up.  He raises his voice and cuts off the other boy from speaking.  I cringe.  The two exchange glances and smiles while my boy goes on and on about stuff that I don’t even know about.

I sit behind the slanted blinds, fingering the pages of a book, “The Autistic Brain-Thinking Across the Spectrum.” Naively I thought I was going to be able to read this, originally intending on keeping tabs on him since it was the first time I let him go outside by himself.  Now, I want to cry and I wonder why I let him out.  He leaves them to go and put the box of chalk away in the backyard (because I couldn’t take any more and called him inside).  He drops the box of chalk and tries to get them to come and help pick them up and I hear these two making inside remarks and gestures like an inside joke, “what’s wrong with him, what’s he trying to do?” They regarded him as a curiosity, but I don’t think they knew about the chalk he was trying to pick up.  Sigh.

The other boy comes and she jumps up and down squealing, “He’s here, he’s here….!”  My son tries to talk to the parents walking in, but my heart aches listening to him sound out of place with his voice raised, desperately trying to get their attention.  One talks with him briefly, that was nice.  His conversation was all over the place.

I’m proud of myself for not getting aggressive, but my voice sounds acerbic as I try to tell him that he cannot follow them upstairs.  He gets upset and I take him into my room and explain again.  I distract him with some rough and tumble and he laughs.  Still, he keeps verbalizing the statement, “They have a play date and they never invite me.”  The truth is that they have a pretty busy schedule and not around when we are.

Well, just something I had to write down.  Something I had to remember.  Each day is indeed to be taken as small, tiny baby steps.  I’m glad I felt comfortable letting him go outside without seeking to shadow him.  Hopefully, next time will be better. Hopefully, there will be a next time.

Light Peeks Through the Darkness


aurora-borealis-aurora-borealis-10324489-1280-848

Yeah.  I’ve got stuff to be grateful for.  If you read some of my recent posts, you know that I’m between a rock and a hard place trying to find a job.  The rock in the hard place is me.  The hard place is between two circumstances of life.  Job vs. Jobless.

JOB:  Trying to be short on the back story, we live without any income and without pubic assistance. It’s getting down to the point of not knowing if we can make the rent next month. Tight and Tough.  I need to find a job for money and possibly, if I can manage it, health benefits.

JOBLESS:  Being jobless would mean that I’d have all the time in the world to advocate for my son’s education. It’s been non-stop and has spilled over into the summer.  I thank God that I am not working… and feel guilty about it.

GRATEFUL:  I’m so grateful for the free time I have to do that advocating thing.  My boy has been thriving at his school and I feel so grateful for every single person at that school who works with him.  It seems that next year he will be pulled out of this school, and away from all the people he knows and who know him.  I’m so grateful that I have the luxury of being able to jump right on this thing and I’ve been talking to people, and wrote a letter to request they make an exception for him.  See, they decided to build another school in our area and needed to fill it up.  My son was not moved to this new school, but to a school in between OUR school and the new school.  I guess what it is, is that I don’t want to take that chance and risk all the progress we’ve made, and start over at a different school.  SO MANY changes for him to deal with, and so many people he will never see again.

It’s just too God damned much.  Also, we fought for things at that school like forming a social skills group, a Lunch Buddy group, both of which are designed to teach the kids appropriate social behavior and create scenarios where they have to interact with one another.  They’ve gotten older students in the school to help out with this.  It’s HIS community.  Also, we, the parents, have been able to successfully work with the professionals at the school.  We’ve been able to, I think, change how they see the autistic child.  We’ve seen progress in this area, and though they really need to finance this, they are actually suggesting/urging to their professionals to take workshops in autism.  That’s a big freaking step.  I’ve talked to them about how the kids get labeled and how they had, indeed, labeled an incident incorrectly because they were not familiar enough with what autism is.

They know that we are involved parents.  We care.  We volunteer.  We support them, take their advice, they listen to us and sometimes take our advice on how to handle our son.  I mean, it’s been working!  We’re a team!  Keep calm. Yeah, I know. So can you see how grateful I am that I am jump on this right away?  If I were working, I wouldn’t even know about this switching of schools until I got the letter right around a week before school starts.  I’m so grateful for the professionals at that school who have listened to me and have spoken to me.

Aside from the above, and of which I can go on and on, another thing I wouldn’t be able to do if I were working would be taking SPAN (Statewide Parent Advocacy Network) workshops.  I’ve been learning a lot about our rights and the laws.  I am still learning how to approach IEP meetings and interacting with the professionals at school in an effective way, a non-threatening way.  Anything having to do with advocacy for the special needs child.  Just being exposed and networking with the professionals and other mothers has given me more confidence than I ever thought I’d have.  I’m more assertive which surprises the heck out of me and I like it!  Another thing I’d really like to do is bring the awareness up to education of the school professionals and also the school body, the neurotypical kids. Ignorance breeds fear.  Fear breeds violence.

So yeah.  For right now, I can see some light in the darkness… and it’s pretty amazing.

Disney and the Lone Ranger


imgres                                     imgres-1

It’s after midnight and I’m fuming.  I vowed to write a post, but I’m so tired.  I’m so upset about the Lone Ranger movie.  I’m sick.  I promised Gabe that we’d go see this movie… I was looking forward to it, myself.  It was produced by DISNEY and I automatically felt it was safe to assume it would be appropriate for my boy.  Oh how I was wrong.  I just found out about the extreme violence and the scene where the villain of the movie slices a heart out of a living person and (gulp) eats it.   What the heck?  Where’s the decency?

Yes, as a parent I really should have checked more into this movie, but shit, I’ve been into watching the trailers for weeks now.  I never saw the violence spoken about in the reviews.  Disney’s reputation lulled me into false security.  You know, the almighty Disney Image of princesses and the princes that sweep them off their feet.  I’m boycotting this movie, even though I know full well that I can see it without my son, on the sly.  I would not feel good about that and I’m not about to betray him in that way.  What the heck am I going to tell him after discussing this movie with him for weeks?  After both of us conveying our excitement to each other during those weeks?

Another reason I am pissed is that Disney marketed this violent adult movie to young kids.  Kids that play with Legos.  Lego kids. imgres-2imgres-3

Need I really say more?  Well, I’m making a hard parenting decision and will risk my child’s wrath and severe disappointment– something I try my absolute best to avoid, by somehow explaining why we’re NOT going to see this movie.  At this point, I really wish that I had a much larger readership.  I feel I want to get this out as far and as wide as possible.  Yes, I’ll even pull the “Autism” card.  It’s much harder for autistic children to adapt to changes and I’m quite sure that he’s feeling pretty set that he will see this movie and soon.  He’s smart and knows that July 1st has come and gone…. I PROMISED!  So many things going on right now, did this really need to be one of them?  Today is his dad’s birthday, so maybe he’s be preoccupied with that and some kitchen cooking things I’ve got lined up for the summer.  A reunion picnic coming up, we’ll see how that goes.  One thing I have going for me is that there are a couple of other movies coming out like “Despicable Me2″and “Turbo.” imgres-4

One commenter stated, “My mother let me see the ‘Exorcist’ when I was six and I turned out all right.”  Um, yeah, really?  BTW, how are we supposed to know that you’re “alright?”  Your word is not enough for me.  Yes, this world is changing, but where is it going?  Nowhere I want to be.  I don’t care if there is a lot, OR “just a little” violence.  Violence is nothing different than that and I’m NOT down with my kid being exposed to it at his present tender age of eight years old.  I should’ve known something was up when I realized that Johnny Depp had top billing and that his name is set over Armie Hammer’s name, meaning the main character is Tonto and not the Lone Ranger.  Whaat?  I want the legendary hero and not a caricature!   I also should’ve known something bad was up when they changed the Lone Ranger’s outfit from white (really a light blue when seen in color) to black.  We’ve been showing Gabe the old LR episodes and he’s expecting that… I should point out, however, that he DID point out the difference in the two Tonto’s.  Also, Disney there are so many Native American actors out there who would’ve been better choices than Mr. J.D.  He’s got to wear a lot of blackish makeup to cover up the fact that he’s got white skin… geesh.  I’m not reflecting what critics are saying.  Yes, I did read a few reviews, but as you can see, I have plenty of my own reasons to complain.  I have provided a few random links below and I’ve not read them, so there are no hidden personal agendas regarding reviews.

This is where my kid spends time, in anticipation of going to see the movie, the LEGO Lone Ranger site:

LEGO LONE RANGER home page games to lure them in and products galore to buy.

Oh geez, I’m going to publish this probably too soon, as I often do (AND DID).  Then I’ll spend tomorrow editing and adding stuff I forgot about…. OR maybe I’ll do the right thing and wait.  One thing is VERY sure.  I will be boycotting this movie, and the Lego sets associated with it.  I would boycott Disney, as well, but we really can’t afford to go to Disney amusement parks or purchase special novelty items, so it won’t be too difficult to just  continue to stay away.  My kid will hate me, thank you very much.

Follow up to Yesterday’s Post


229219_10150565589560316_4887166_n

I got so caught up in my own experience with being bullied (This is a Bully Free Zone).  Usually I just have a burst of writing, then publish right away without editing and refining my thoughts.  But where this would normally lead to is my hopes for my child, new to the public school system in an urban area.  Sometimes I see my son as a fragile flower… yeah, that’s me; but it’s definitely a product of also knowing that school aged kids can be with most ferocious of tormentors and I worry about that.

We had an incident this year with bullying, where the adults of the school did not properly, nor thoroughly, assess this incident to appreciate the full story.  What they saw were two kids who accosted my child, one holding his hands behind his back and one punching him in the stomach.  What would that tell you?  These were kids from my son’s second grade class.  They also saw my son laughing, so they presumed that they all were playing.  THAT turned my stomach.  Autistic kids cannot read or present appropriate facial expressions or body cues.  The teacher in the lunchroom did not have the training to recognize this and so she thought that they all were playing.  After I got done flipping my wig, I got ahold of the principal and blasted his ear on the need for training for ALL personnel who come into contact with my kid.  I explained to him what happened and that I had extensively questioned my son and concluded that this was not playing.  As an outcast during my school years, I realized that he, who also does not have many friends, must have been happy to have attention from his peers, in ANY form, hence his laughter.  Also, he did not realize what had actually happened.  My son said that they thought he was a “robber.”  It took several separate questioning sessions to get out of him that he was not playing with them in the first place and that their actions HURT him.  I think he still was totally clueless as to what had transpired.  Thank GOD that the school acted accordingly in that they have zero tolerance for those actions whether it was play or not play.  These boys are now separated in the classroom.

Getting back to educating our teachers.  Yeah, does that sound like an oxi-moron?  It does to me.  These school districts do not want to pay for the continuing education and training for the teachers in their schools. Our principal is suggesting or urging our teachers to get training in autism.  It may not seem like it, but it’s a pretty BIG damn step!  At the very least, he is acknowledging the need, but sadly not ready to have the district pay for it.  Hopefully, they will have more of these workshops included when teachers have to go for their “inservices”.  It’s a day when the district’s kids have the day off, but teachers must go to these, I want to say, conventions and take workshops.

Plain and simple.  I do not want my kid bullied.  My rant of yesterday stems from that; but as a mother of one, I feel for all children, not just my own.  Forget about No Child Left Behind.  NO CHILD SHOULD EXPERIENCE THE PAIN OF BEING BULLIED, period.  My heart is bursting.

Happy Birthday, Mommie Fail


This is Gabe at chuck e. cheese for his birthday in 2009.

Sometime last week my facebook status read:

Saturday is Gabe’s first birthday party (with other kids)…. We’re BOTH looking forward to it…

…and we were.  This was his very first social event amongst his own peers, some from school and some from the birthday girls’ other friends and family.  I was so, SO excited.  He talked about this party almost every day in the weeks leading up to the day.  He’d say that him and (I’ll say Helen) were going to do this, were going to do that, until I realized that he never mentioned anyone else.  So, I started to bring in the idea, “Honey, you know that there will be other kids there, right?”  “Remember Gabe, this is a party.  There will be other kids from your class there.  Helen will have her family there,” and so on.  He never gave me a hard time, never said he didn’t want to go, still talked about the party.

So, the party was held at Chuck E. Cheese.  Gabe loves to go there and has been there several times, enough times to be comfortable there.  We’ve been there mostly on weekdays, after school and the place is pretty tame.  We’ve also been there on weekends when the numbers of running, screaming kids multiply like nobody’s business.  Still, he never seemed to have a problem.  THIS day, however, there was a problem.  A BIG problem.  I could kick myself in the ASS because I let myself be lulled into the illusion of normalcy.

Mommie Fail:

On that day, Gabe started to say that he was going to sit near me.  He said that he was going to play the games that were near me.  I kinda did get the impression that he was getting nervous but I told him it would be okay and of COURSE I was going to be right there… which I WAS going to be right there.  How involved I was going to be in his activities I was going to leave up to him.  Then right as we pulled into the parking lot, he asked me if I had headphones.  Again, I saw a red flag and I chose to ignore it because, well, we never used headphones for him, but I knew that he used them a couple of times in school.  I just said, “You know we don’t have headphones.”  I don’t know.  I look back now as if I could have done something, but really, we would have still gone inside.  I kept telling myself that he was really excited and looking forward to this party.

Oh shit.  I know I shouldn’t beat myself up over this, but I should have known what it was going to be like inside this place, on a Saturday, at a birthday party for seven and eight year olds.  I was so looking forward to this being a normal, great milestone for my kid.  Okay, I will just list the conditions that awaited us.

  • A very busy Saturday.  There were kids running around, screaming and it was just too overwhelming, even for me.  I did mention that we’ve been to chuck e. cheese on Saturdays but this was crazy.
  • The reserved area for the party, nay several parties, was situated right in front of the stage and speakers, blasting music.  I mean, BLASTING.  This is something I did know.  I’ve seen parties there before.  Again, kick me.
  • Flashing lights and several monitors going at one time.  Again, I know this yet I didn’t think of it being an issue.

Any one of these is pretty annoying within itself, but I did not think of the effect on my son, let alone ALL of these at once.  I feel like such a horrible mother right now.  We’ve been getting really good, positive feedback from school and the social skills groups that I, plain and simple, let my guard down.  I let others, Gabe, and my desire for just a normal life interfere with protecting my son.  Monster Mom.  I was actually looking forward to his next birthday and the possibility of being asked for a party… AND thinking that chuck e. cheese was a good idea.  Oh Nooooo.

I found the table for the party and brought Gabe to at least show our faces and say, “happy birthday” to the little girl.  I spoke with the parents and they were really understanding about the whole thing.  I urged Gabe to say hello, but he was totally shut down at that point.  Sigh.  Attempting to teach manners through a sensory shut down?  Yeah right, hello?  Hello?  Then we left.  All he did manage to say was that he wanted to go to a “nice, quiet place,” so I took him out to the car and we sat there for a little while until he started talking more to me.

The blessing of children is that they will look into your soul and love and trust you no matter what.  He just said, “I told you, mom!”  Yes Hunny Bunny, you did.  I assumed he was talking about headphones because, really I could’ve used them, too.  I know that this is a learning moment for me and I am still soaking up that lesson.  People will say to learn and move on… and I will do that.  But part of that lesson is reflection.  Absorbing how my actions or non-actions affect those around me, especially when I make decisions regarding my precious boy.   It was our first such party and I guess that in the future I will need to do some research to scope out the situations…. Yeah, my kitchen will be my Situation Room where I plan my strategies.

My New Strategy

chuck e. cheese is not a good idea for Gabe’s next birthday…… period

His Name is TONY, Dad~!


First and foremost, this is amazing to me, and that I caught on to it.  This morning we were free to head on over to our diner for breakfast.  I say “our” diner because this is the one that DH has the school discount for.  He always goes there to, 1:  Support a local business, and 2: the school discount gets him 15-20% off the bill…. also, it’s very close to us and that’s a plus.

So we were there today, waiting for our breakfast and I sort of hear, on the peripheral, a conversation happening between the hostess and a man.  I don’t see them, but she calls him ‘Tony’ and all of a sudden Gabe pipes up (he must have been listening, too) and blurts out, “His name is Tony, Dad!”  He was so excited.  I still don’t really know who the guy is and just let it go and never turned around.  I mean, give those people their privacy, right?

So then later on the manager comes over and he says hello.  He always says hello.  Then Gabe says, “Hi, TONY, how are you?”…. and blah blah’s of other stuff he talks about, but then it just clicked that my little guy, who’s been talking to this manager like forever, but I guess without knowing his name, picks up on his name, then immediately uses it in a greeting.  How cool is that!  Now, this might seem trivial to most of you, or all of you; but it’s a pretty BIG damned thing for me. First, I feel so blessed to be able to actually see this in action and then put two and two together, myself.  Usually my boys are out together, but without me to  save some money here and there, but big guy wanted us all to eat out this morning.  Second, part of Gabe’s disability is that his social skills are/were practically non-existent.  I can’t wait to tell the supervisor of the social skills group… I think it’s working!  It’s so wonderful to see this progress in action and taking hold. This coming week is the last week, but then it starts up again when the summer semester at the school starts.  Gabe is also starting to hold the doors open for me and even gesturing with his hands and saying, “come right this way”…. LOL.

Oh, another biggie thing happened at breakfast.  Gabe made an actual egg sandwich all by himself…. what?  Up until now, he always refused a sandwich and has not had eggs in a very long time, since being a toddler.  Out of the blue, he orders an egg, then proceeds to make a sandwich with the toast that was served.  I suspect that he saw me modeling that behavior because I always get scrambled eggs and rye toast, then make a sandwich out of it, which I also did today.

Okay… I just wanted to write that down.   Every year he is making progress and it’s pretty exciting.

Oh hell, am I too “mothery” and not realizing that he’s growing up and can do a lot more than I thought?  I’ve been told that I baby my little guy and I try to keep that in mind, but there are still a lot of things I won’t let him do by himself.  I have no other children to know what is supposed to come next, and then I see all these new things… Just wondering.


(I preface this post with a note that this post was already published and linked to “a diary of a mom”, prematurely, through the quickie post feature at WordPress and still trying to get used to it.  This complete post is really an update. My apologies for any inconvenience.)

This is Autism Awareness Month and my boy is autistic.

I don’t say that to draw attention to my son being autistic. I write that to draw attention to Autism.

Lately, I’ve been seeing embryos of posts for myself that start with comments I make on other blogs.  Finally, I am writing one here that I’ve written for Jess at A diary of a mom, which I highly recommend reading, BTW.  Her post today is entitled, “Passed Right By – and Never Knew”, thoughts that we all must be thinking.

Long before autism, I believed that we are meant to turn our negative experiences into positives by sharing them to help others.  There is such a liberation, a burst of freedom when this clicks within our consciousness.  Just think about it.  For eons people have been asking themselves, “Why?”  Why does God let this happen to me.  I believe that I’ve found the answer.

“…sharing them to help others.”  What I left out is “sharing them to help others who share the same suffering.”  While everyone suffers uniquely in intensity and within our own circumstances, we so deeply share the hurt of our suffering.  I am reminded of this just this morning.  Our son has been very upset lately surrounding “school”.  At first, I thought it was the typical adjustment from spending a week off from school without the structure provided at school.  I could not get out of him why he was so upset or what had happened to cause it.  This morning he told me that “the kids don’t let me play…”  This was the only phrase that I could understand, yet it burned me to the core.  If you know any of my history, you know that I spent 1st grade through 8th grade without friends, among people who actively pushed me away.  This morning, my hurt was Gabe’s hurt… and visa versa.  I took him in my arms and generously administered copious skin on skin back rubs.  I told him that not everyone is going to be our friend.  I told him that he does have other, new friends at the social skills group he just got into.  I told him that Zach is his friend.  I couldn’t tell, but I hope that was a consolation to him.

Just found an article I wrote about the “Blessings of Pain,” hoping to elaborate more about what our personal pain can be elevated to.

My quoted comment above states that I discovered this little bit of wisdom “long before autism” and that is correct.  For my whole life, I was wondered why God would isolate me, it seemed, so deliberately.  I wondered why none of my teachers or school principal did anything to help or stop what was going at school, a catholic school, btw.  Just this week I confided this bit of my history to a counselor at Gabe’s school and she had an answer that made sense and I had never even tried to rationalize an answer for myself.  She said that the reason they didn’t do anything was because they were thinking that this experience would make me strong.  Well, I don’t doubt that, but it had also screwed me up emotionally and socially for most of my life and I still carry the baggage that can be seen at times, more than I would like.  It’s dirty baggage.  It’s smelly baggage.  It’s damaged baggage.  My old school is closing and I cannot say that I am sorry to see that happening.  Thirty years later, my old classmates want to have some kind of party to commemorate the school.  Since on facebook, they had gotten dinners and fundraisers started to save the school even before this.  Needless to say, I had no desire to participate in any of this.  My memories are damaged.  Distorted.

Counselor Lady told me something that I knew already.  She said that God would not have let Gabriel into our lives if we could not deal, if we could not handle a child as special as him.  Yes, I knew this.  I didn’t know it from the first day, but I learned it.  After continually, if even with humor, complaining about how my life was over because I had a kid in my mid forties, I learned that I would’ve made a horrible mother if I had a kid when I was biologically supposed to, in my twenties.  I know more and accept more about myself now than I did before and that is so damn important… to be as comfortable as you can be in your own skin… BEFORE having kids, and this applies to ANYONE, any mother, any parent out there.  Young parents teach their kids what they were taught from their own parents because that is all they know, quite frankly, and I had a mom who was a yeller, screamer and a hitter (and I’ll not say with what).  An older parent can teach more than that.  We can teach what we’ve learned from our own lives, from our own personal perspective and less from the strict perspective of our parents.  I am SO aware that I am more like my mom than I care to be.  With this knowledge, I am super sensitive about checking myself before I get to the “hitting” point.  I’ll not lie and say that I was always successful, but I can say that those episodes were stopped very quickly and I have been successful for over a year now.  Even at his young age, I made it a point to apologize and ask for forgiveness.

Somewhere in my thirties I came to the realization, s-l-o-w-l-y, that all my hurtful experiences could be made clean by using them to help other people going through the same pain that I went through.  God made me a talker and even though I spent the first part of my life largely in silence, when I started talking you’d be hardpressed to try and get me to stop.  It’s well known that if someone had an issue and needed emotional support, what is appreciated and helps the most is if someone could talk to that person who had experienced the same problem.  Other people try to help and say the same kind, yet superficial and irrelevant words; whereas others who have that specific empathy, offer so much more than that.  They offer their own experience, they offer their own pain up in an effort to heal the hurt of another.  Grace such as this not only can help that person, but the person who offers it.  We are indeed healed a little bit more by sharing the most darkest parts of ourselves.  When we can realize the poetic harmony this plays in our lives, we will never question again the “why’s” of a tragedy.  We will never doubt or blame our God (whatever the name) for making us suffer.  We can immerse ourselves, bath ourselves in the pain and emerge on the other side with something in our pockets for an emergency.  With such an arsenal, we now can find purpose in any part of our lives.  We can be the wounded healers (I did not coin that phrase.  It’s the name of a book, “The Wounded Healer”, written by Henri J.M. Nouwen, one of my very favorite writers, may God bless his soul.  He also said, “By giving words to these intimate experiences I can make my life available to others.”

We are put on this earth to interact with others.  There is no doubt about that.  Let’s love one another.  Let’s help one another.  Let there not be hate or violence against others.

Hey, just adding in here that I’d love to hear your thoughts, so please comment with any and all of them.  I welcome any and all comments… with spam, disrespect and filth being the exceptions.  Thanks!

Sensory Friendly Theater


 

 

This is Autism Awareness Month and my boy is autistic.

I don’t say that to draw attention to my son being autistic. I write that to draw attention to Autism.

Every post from now on in the month of April, I will start in this way, regardless of content.  I’ve not done much this year I guess because I’m not a good planner, so this is the least I can do.  I have blue shirts and blue nail polish and briefly I contemplated dying my hair blue; but ya know it has no effect if I don’t leave the house.  Sometimes I wonder if there are people out there who will read this and listen…. especially people with the power to change things.  We’ve had little victories here and there, but in general I am disheartened by the apathy of the education system.  It’s either that they don’t give a damn, or maybe they are in a comfort zone they fear to leave.  They have a system and this autism thing just throws a wrench into the works and screws them all up.  I can tell you that when our school decided to form a social skills group, it was on the fly and they don’t even know if they’re doing anything right yet.  I was told that they are creating it as they go along and while I’m glad that they are trying, I’m a little  a LOT worried about how successful their efforts will be.

Well, God will answer our prayers.  In my case, because I’m not good at praying, He sees into my heart and knows what I need even before I know and I trust that.  I received today in Gabe’s backpack, an envelope from his Speech teacher.  Inside was a press release from the Union County Office of Public Information, announcing a new Sensory Friendly Theater series of performances specially designed for children with autism and related disabilities at the Union County Performing Arts Center in Rahway, NJ.  The notice is entitled: “Union County Offers Theater Program for Children with Autism and Related Disabilities.”  This is what caught my eye:

The new series, which begins on June 10 with Tom Chapin and Friends, is designed according to guidelines that help to reduce disturbances for youngsters who experience heightened sensory sensitivity. The Performing Arts Center is committed to a creating a judgment-free zone with plenty of trained specialists who understand autism and similar disabilities.

A sports program for the autistic child, it is not; and I personally would LOVE such a sports program.  Seriously though, I wouldn’t care if this was a special program for making 10′ snowmen on a hot July afternoon.  I’m in a state of elation right now because these are exactly the types of considerations our kids absolutely need in order to benefit from their participation.  Adults who have training and understand autism (and similar disabilities) are absolutely essential for a successful program such as this.  There is a lot more to this notice, but I keep coming back to the above words:  “judgment-free zone, trained specialists, understand autism.”  The sad fact is that our school professionals are officially none of these things.  Let me just stop right here and say that this in no way diminishes the teaching abilities of these professionals.  I think, as teachers, we are very lucky to have who we have, however…..   My experience with school professionals working with my boy:  Compassionate, yes.  Patient, yes.  Accommodating, yes (so far).  But even our Special Ed teacher is not trained to understand autism.  Why is that?  Well, she got her degree way back in I don’t know what decade and has had no other education to bring her uptodate on Autism or any (similar disability)… umm that really, no, REALLY doesn’t sit right with me.  I think I can be fairly certain of that because I’ve asked whether she had training and I never received an affirmative answer or any qualifiable answer.  Soooo, what would you think?  I’ve advocated to the principal, political candidates for office who come to our door, and anyone who’d listen, and even at a town meeting that it’s imperrative that our teachers be educated to understand autism.  I feverently believe that it’s not just unfair to ask our children to be put into a classroom with adults who don’t understand them; but it’s also unfair to put teachers into that same room with the knowledge, tools and strategies to educate these kids and navigate the myriad of possible disruptions that can occur.  So you see, I have reason to feel disheartened.  Anyone who comes to this door will continue to get an earful and I suppose will regret knocking on our particular door…. oh well.  SO to get this news today gave me a little hope.

I’d also like to share with you the person responsible, Union County Freeholder Chairman Alexander Mirabella.  I won’t replicate the whole announcement here, but here is a link at NJtoday.  If you’d like to call for information, here the number to call: 732-499-8226… OR here’s the link to Sensory Friendly Theater web page

Autism: The Life 2012


Last night my head was swirling around with ideas, but as always when it gets time to write them down, I’m a blank.  So, I’ll do what I always do, write.  Write down the strands of thought that surround my head like a maiden’s soft, light hair that moves with the breeze in a surreal kind of way.  Yes, I’m awake and hope you have the inclination to stay with me.

When we first leaned that our boy was autistic, I was devastated.  For him and for us.  We were new parents, well not “new” exactly, but he is our first and only one, which will probably remain that way since we are in our early and mid fifties.  We didn’t think we’d have him (if you’d like to read those details, you can look here) in the first place, so after seven years, I’m not so sure that God has another one in His plan for us.  In a way, I’m relieved as it would be a hardship, both financially and probably physically; but I do wish that our Gabe could have a brother or sister.   Not too long ago, he’d ask for one, almost constantly; and even now, he looks at my belly and asks if I’m pregnant…. oh boy.  Which reminds me of a most embarrassing couple of moments over this weekend at a hotel we were staying at for a wedding.  We walked by the hotel’s lounge and there was a man there with a huge gut.  Quite out of the blue, Gabe said, rather loudly, “Hey MOM, that guy’s PREGNANT!”  Well, I tried to ignore what he said which was a pretty bad mistake as he kept repeating himself all the louder because he didn’t think I heard him the first time, “MOOOM….”  It was all I could do to muzzle him and get him out the front door.   I tried to explain to him that saying things like that were inappropriate and tried to explain the concept of being insulted… think I failed with that, too.  This has not been the first time he’s brought the concept of men being pregnant as he has frequently expressed his belief that HE was pregnant just because he ate more than usual, gaining a pretty big belly.   He’d lift up his shirt, pointed to his belly and say, “MOM, I’m almost pregnant~!”  Now, THAT was funny.  Still, I had a hard time explaining that men and boys do not get pregnant, only women.  He’s not asked me what exactly that is “yet”, and I’m grateful.  After I thought I did a decent job explaining that men do not get pregnant, I was validated because the next day, we saw that man again and Gabe said (all too loudly), “MOM, there’s that man with the BIG belly~!”  Um… Yep.

Still, the incident, not surprisingly, had me pretty upset even though I tried not to impress that upon him, I’m sure that I did.  I’m maybe too obsessed about weight, or looks being singled out for laughs.  I’m quite positive that wasn’t the intent, but I’m still pretty sensitive to that and don’t want Gabe growing up, insulting people no matter what the intent.  He needs to learn this very differently than most kids do.  Even though we know that autistic children can learn social manners, it’s not so simple.  They do not pick up on social cues like the rest of us can, instinctually.  They need to be presented with the concept and they learn it much like an academic lesson in school and they need to practice it over and over.  They may never empathize, but they can learn to understand intellectually how important it is to learn and practice; but they may never truly “feel” that importance.  I’m not even sure that Gabe will ever learn to walk in anothers shoes, which has always been important to me, in my learning.  I always felt the need to REALLY understand things and, indeed, I’ve rarely followed through with  anything unless I truly understood to my own satisfaction the importance of whatever it was.

WHAT ARE SOCIAL SKILLS?

Social Skills are a set of behaviors that allow a child to get along better with other people.  A child with adequate social skills can adjust well to changes in his environment and can avoid verbal and physical confrontations with other people. A child who has poorly developed social skills, however, may have poor self-esteem, may display conduct problems (fighting, arguing, defying adults), and may have difficulty developing peer relationships.

WHAT IS A SOCIAL SKILLS GROUP?

Social skills groups focus on teaching children a variety of social skills to help improve their ability to make and keep friends, develop more self-confidence, and behave more appropriately.  Role-plays and group interaction will give the children opportunities to practice these skills during the group session.  The therapist will utilize behavioral reinforcement to promote rule compliance, participation, and use of appropriate social skills, while also encouraging and reinforcing the children to practice these skills outside of the session.  Objective information regarding the children’s behavior will be gathered before and after the group to measure the children’s progress and parents will be provided with written feedback at the conclusion of each group.

We are truly blessed to have gotten Gabe into a social skills group.  Please see the above for a good description.  This is where they learn behaviors which are so-called socially accepted behaviors.  The problem is that though they may try to interact with their peers, they never learned how to do that, as other children have learned and that is by picking up on the silent social cues and body language.  They don’t intuit what is the appropriate, recognizable response or non-response to what the other child/peer displays.  Also, Gabe’s group is a group of peers.  They see it as play and I’m sure Gabe thinks it’s a play date.

Gabe is seven years old now and maybe that’s too young to learn about how/why a person can be insulted.  I ended up repeating myself about the man maybe getting insulted, but then I realized that he probably has no what that would mean.  I am dedicated to keeping open communications with him.  He knows that whatever his question is, I will listen and I am frequently urging him to share his thoughts.  He knows that I will urge him to just tell me his thoughts.  Most times I’ve got to admit that I don’t really understand what comes out of his head, but I’ve learned to ask questions so that he’d have to elaborate on what he’s thinking.  I’ve also had to learn when to just let it be when that doesn’t seem possible.  Sometimes I grieve for the lack of communication and understanding.  Lots of times I feel a total disconnect.  I grieve because I’ve always dreamed of being a mom much different from my own mom.  She was totally unapproachable and I never opened up to her or she to me.  My dream was to have a totally different relationship with my children.  Open communication all the way.  If you can’t do that, what the heck kind of relationship IS that, anyway?  I am learning that Gabe conveys more to me than words ever could.  He is my teacher and has been from the first moment he took his first breath.  That is a post within itself.  So, Gabe is teaching me that not all relationships are the same.  Huh?  Didn’t I know that already?  Apparently not.

One last paragraph.  There are so many facets to Autism.  Just like the disorder, itself, there are so many areas of specialty, so many areas that really need to be improved, that really need the attention of the professionals and people just like you.  It’s totally overwhelming, so I take it in little bites.  The area I find myself focusing on lately is how badly our teachers NEED to be educated about autism.  Yet, our schools will fight to the death to stay in denial.  They refuse to acknowledge that intervention services are needed for the autistic child to get an “appropriate” education.  Forgive me, but mention the word “quality” and “education” together and you can kiss any intervention service good bye.   Does that make sense?  I have to ask because I’m not college educated, you know.  Total idiocy!  No matter how much compassion a teacher has, if he/she is not trained to recognize and deal with any problems that arise, not given the strategies they need to handle the tough situations, they will just end up feeling frustrated and might even label a child with a negative label, even… YES… even the label of BULLY.  This of course, would most likely stem from ignorance, but does anyone want this to happen?  I know I don’t.  My own son could be labeled as a bully because he tried, in his own “socially unacceptable” way, to make friends with another boy or just trying to get someone’s attention, again in his own way.  Maybe that need for attention was misinterpreted as bullying…. and I do see how that can happen.  I can see my son being confused and feeling rejected and may be even push the other kid in an attempt to gain their attention and maybe friendship.  Nobody and I mean nobody would see it that way in the mainstream world.   I’ve been through a rough patch lately with a mainstream mother verbalizing in front of me that she would not want her typical kid in the same class as my little guy.  That hurt a LOT.  It was only after a lot of hurt that I realized that she was probably severely uneducated, maybe misguided  even as she strives on a daily basis to project her highly educated personality.  The sad fact is that EVERYONE is in dire need to be educated, teachers, typical children, typical moms and dads.  So, maybe my focus should be on wholesale education for everyone… you can’t be overly educated, can you?

The Apple Doesn’t Fall Far


Don’t be afraid.  This is just me from this past Halloween and I totally enjoyed making myself up for the day.  Now, it sort of fits my feelings.  This post will be written as a specific comment for Jess’ post on “Diary of a Mom” blog in which she chronicals her family’s experiences, specifically with autism.  I am responding to her post entitled, “I See Myself”, without taking up too much space in her comments, which is kinda inevitable at this point as my middle name is “Tangent” and at least here, I can go as far away as I want… hee hee.  I almost did not read it because I’ve been rushing through my delayed morning routine which is to go through my morning emails and community sites I frequent before getting into much needed knitting this week.  I read this post and saw myself and had to stop myself to breath.  I am forever seeing myself, as she has.  I’ve seen myself even before my son was diagnosed, but never knew it to be Autism.  I mean, I see myself as being fine.  Different, but fine.  I grew up in the sixties and if I were diagnosed back then, it might have been for retardation, not autism and my life would most certainly be very different…. I don’t like to think about that.  As a matter of fact, I don’t like to think about anything.  As far back as I can remember, I could just sit there for hours, just staring off into space without a single thought.  I still have these times, but not as much because, I suspect, solely because I have a computer with internet.  Games? NO… My vice is just surfing from one site to the next without much thought or concentration.  I LOVE information, and that is what I get though I rarely take the time to read each thing through… really.   Wow, sort of the same thing except it’s external.

Jess, I know what you’re going through.  The difference is that I’ve lived my whole life painfully knowing that I was strange, weird; and it was unexplained.  I yearned to be normal, accepted as normal, make friends and be comfortable with them.  I was acutely aware that I should look people in the eye, yet never could seem to get my eyes to accept my will.  People judged me as being stuck up.  Stuck up?  I wondered how anyone could think that when I lived without the “things” in my life that I thought were instrumental for that assessment in other people, people I judged…. and it went on and on.

Eventually, I learned to compensate, but I was always criticized, chided by family for not seeking out peers, for being a wallflower, for never “making an appearance” when we had company in the house.  I’d spend summers holed up in the basement, pursuing my interests, instead of being outside with the other kids on our block.  I had a miserable school experience (I always have to add that in), but then later on, when I started working, I realized that I would meet people that didn’t know me and I could be whoever I wanted to be.  I did that, but I soon realized that I’d have to spend time with friends if I wanted to HAVE friends… lol.  How was I going to do that if I could not even hold a conversation without stuttering, without running?  To this day I absolutely love to entertain gatherings, I find that I have a LOT of things to do in the kitchen, away from the people.  It’s my refuge in some ways.  I’m comforted by doing, preparing food and serving.  This past Christmas, I was almost bodily forced to sit down with my own family.

I can remember one New Year’s Eve party.  I was with a bunch of people, most of whom I did know.  This was in the late nineties.  I can remember not wanting to be the center of attention, I was cringing, I was frantically looking around, I was on the verge of what I can only assume was a melt down.  I was shaking with pins and needles exploding into my skin.  The irony of this is that I definitely was NOT the center of attention.  As a matter of fact, I was not being noticed at all, a fly on the wall, sitting at a table, all alone.  Yet, I burst from the room, into a bathroom stall–pretending.  I was in my mid thirties and it was this night that, after 5 minutes or so, after the clock struck midnight, I first forced myself out of there to intentionally mingle.  I tried to look normal, but felt far from it.  I left soon after, but still, this was a good idea, I thought.  I could accept and allow myself that social break when I needed it, but after 5 minutes I’d come back to people.

My own flashbacks include my dear hubby from the time our son was born, routinely would almost force me out of the house at least once a week to get out and take time off away from being a mom.  He never wakes me up to get our son ready for school.  Does he know something even from way back then that I am totally oblivious to?  Believe me, he has his own demons, yet he either strives to make life easier for me OR he is merely sticking to his own routine which is so deeply embedded inside him.  I like to actively believe the former.  Jess, to this day I’ve never made it to the doctor’s office to discuss this possibility and probably won’t for a good long time.  Heck, before my son got diagnosed, I thought I would be judged as a hypochondriac.  Jess, that took a lot of guts and I’m inspired.

Last year I read “Look Me in the Eye: My Life with Asperger’s” by John Elder Robison (little did I know that, at will, I would remember and spell his name correctly)  I linked to the author’s blog.  I don’t like it that Amazon has a monopoly on book links.  I’d rather give the reader a little more than just the obvious.   I gained a lot of insight into my son and myself from this book; and hopefully, it’s the template for future insights into myself.

Not sure if I should continue so I’ll stop dead in my tracks.  It’s been my experience that I will repeat myself over and over, word for word because I wasn’t sure if I had anything more to say, but just felt that I should keep talking… and well, got nowhere for that effort.  Oh maybe I got somewhere.  I zeroed in to the Weird Zone.

 

edited to add:

Okay, of course immediately after posting, I decided that I’m not finished talking.  There IS more I’d like to say. More about how I’ve adapted and more about the positives.  Maybe these ideas belong in separate posts, so this is a good thing……

%d bloggers like this: