STOP

 

Needless to say, we’ve been a bit busy and haven’t had as much time as we used to for blogging purposes.  However, last week, Joel had another breakthrough at school we want to share.

First let me say, we have long suspected that Joel is knowledgeable about all 26 letters of the alphabet.  A couple of the only t.v. shows he will watch and enjoy are Sesame Street, SuperWhy and Sid the Science Kid.  (We really like PBS in our house.)  He has his own set of alphabet letters and when he plays with them, he holds them up and, while he doesn’t say the sound or the letter, you can “see” him thinking the sound or letter.  I know that sounds crazy, but he has this way of “emphasizing” the letter he is holding by either touching it or holding it a certain way.  I have no other way of explaining it.  You just have to see him when he does it.  Anyway.

He was at school on Thursday playing with a set of alphabet letters similar to the ones he has at home:

 

You can’t see the letters in this picture, but he’s moving them around.  This is what he spelled:

Keep in mind, he was not prompted to do this.  His teachers took a picture (obviously) and cheered him on.  They went to lunch and then about two hours later he was back to his letters where he made the word “stop” again.

According to his paraprofessional, he not only focused on this one word, he was also making the letter sounds as he touched them.  Also, he was really focused on the color red.  Interestingly, and I don’t really know if this means anything, she was wearing a red t-shirt that day.  While playing on the computer, he sought out the word “stop” there, too.

So, yeah.  We’re really excited about this.  Throw in him calling me Mama last weekend (and once again on Friday when Maya and I went to pick him up from school) and saying “Shoooe” while taking off his shoes, we are feeling very optimistic about this school year.

 

Silver Coins

Every parent touches the rounded belly of pregnancy and wonders about the personality that is going to emerge from that little guy or girl.  We dream about funny things he or she will say, whether they will say mom or dad first, and the sweet moment when they say “I love you” for the first time.

In those parental fantasies, there is no room for Autism.  There is no expectation that those dreams may not come true for that child.  Your baby is born and you count the weeks and months just like you did during the pregnancy.  You watch for the milestones and count them off.  At two weeks, they lift their head for moments at a time.  You can check that off the list.  At about three months, they are rolling over on their own.  Check.  At six months, they are sitting up for moments at a time without support.  Sure, they are really wobbly, but that’s what makes it so cute.  Check.  For some children on the spectrum, there is speech at the appropriate time and then that goes away without any warning.  One day they are chatty, the next they are not.  At least, that is what I’ve heard.  Joel never spoke past babbling.  He met his physical milestones, despite being very small for his age.  Except on very, very rare occasions, he does not speak regularly, nor has he ever.

And, those rare instances didn’t start occuring until he was enrolled in school last year and started working with his school’s speech pathologist on a regular basis.

The first time he really spoke to me was about a year ago.  The message was short, brief and very to-the-point.  I had just finished tidying up the living room and had moved to a different part of the house to do some work.  When I came back into the living room a few minutes after leaving it, Joel had pulled out all of the shoes I had just put away and was arranging them according to his needs, alternating in some blocks and a couple of measuring spoons I’ve given him to keep.  I said, “Joel, I just cleaned this room.” and started moving toward his pile of stuff to put them away when he jumped up, put his hands out and pushed me.  As he did so, he very clearly said, “Don’t!  Go!”  I stood there completely dumbfounded for about a minute mentally rehashing what had just happened and almost pinched myself to see if I was dreaming.  He watched me suspiciously to see what I was going to do next.  All I could do was kiss him and tell him how much I loved him and good job for using his words.  I hate to admit it, but I was almost tempted to recreate the event by trying to interfere with his efforts at arranging, but decided against it on account of us wanting him to know that communicating his needs and desires with us verbally is actually useful.  That we will hear him, listen and take his requests seriously.

The next occurence happened earlier this year while he and I were getting ready to leave to take him to school.  He was dressed and ready and was waiting on me to gather all of my stuff, his stuff, put the dog in his kennel, turn off the lights and all the million other things that have to be done before you can leave the house for a few hours.  Apparently, I wasn’t moving fast enough to meet his needs.  He grabbed my hand as I passed by him and the front door, put my hand on the door knob and said, “Joel Go!”  Again, very brief and to-the-point.  He was letting me know that Joel was ready to go.  Of course, I had to rehash the moment over and over again to make sure I wasn’t crazy.  That I had REALLY heard him say that.

I am currently a full-time student majoring in Psychology so I know just how we humans can and do perceive the environment around us and how our perceptions can interfere with reality.  For starters, we are built to find patterns in everything.  We look up into a sky full of clouds and see robots, flowers, kitty cats, unicorns, etc.  While you can look at a cloud and “see” a coffee mug, the person standing next to you might “see” a shoe instead.  When Joel is babbling away, it is very easy, maybe too easy, for our brains to connect a sound with a word.  Is he just making the sound “ki-ki” is he actually making the word “kitty?”  That is what I might hear, but James might think he is saying something completely different.  It is like a sonic Rorshache test.  Secondly, memories are constructs of our brains.  Over time, our brains can manipulate memories without our even knowing it.  Two people who share a moment, may very well remember two very different events.  When these rare blurbs of speech happen, I want to remember every single detail of the event ranging from what we were wearing, what room we were in, how his voice sounded as the words passed through his lips, and how it made me feel.

It is important to me to remember all the little details, because I really don’t know if and when another moment like it will occur again.  To me, these memories are silver coins I’ve found and gathered.   I keep them stored away in a special bag and every now and then, I pull them out, warm them in my hand and look them over.  I hear his little voice again and count the words.  I put them away and wait for another one.

Last night, I got a new coin.  This one was pure gold.

I was in the kitchen preparing to cook dinner and Joel was being his usual busy self trying to climb up the kitchen counter to get to the drinking cups.  “Joely, what are you doing?”  I asked as I picked him up and held him in my arms.  I was wearing my eye glasses instead of my contact lenses because one of them had been irritating my eye earlier in the day.  He pulled the glasses off my face and carelessly tossed them to the floor.   He was looking at me and I was looking at him and we were having a nice, cuddly moment when he said quite clearly, “Momma…..Ma ma.”  Just like that.  It.Was.Perfect.  I kissed him and told him how much I loved him.  Of course, he was done with all the cuddliness and wanted down.  He went back to his regularly-scheduled quirkiness and I floated about the kitchen and made dinner, playing the moment over and over in my head.  I drew a picture to commemorate the event.  (It’s up to par with my previous drawings, but I never said I was a modern-day DaVinci.)

I know that I have accepted the fact that Joel may never be much of a talker.  Hell, he may never talk at all, beyond these few words here and there, scattered about like rare coins.  But, man, I want him to talk to us.  I’ve not forgotten the parental fantasies from before he was born.  It is a big deal that he called me Mama.  I know this.  But, I want to hear him say I love you.  I want him to tell me what he is thinking and feeling.  If he is sick or hurt, I want to know where he feels bad.  This is not just for me or his dad or the rest of society.  This is for him, too.  I can’t begin to imagine how frustrating it must be for him to live in a verbal world, unable to verbalize.  Our ability to communicate with each other with words and symbols is part of what separates us from the rest of the animals.  Is it really so bad for me to want this for him?  Does it mean I don’t accept him and everything about him?  I don’t think so.  It just means I want the very best for him.  It just means I’m a parent.

Wordy Wednesday: I’ve Got Some Complaining To Do

Okay, so I’m a little irrate right now, but I’m going to try to maintain my cool and keep it reasonable and rational.  I am probably writing about this too soon after the fact which has a way of biting me in the arse and I figure I should get this out here in my safe place before I go full-on grouchy mom and talk to school officials.

*If you, my dear trusted readers, feel that I am making a big deal out of nothing, just let me know and I will honestly take what you say into consideration.  Many of you, my fellow bloggy parents especially, have dealt with these school issues and I seek your advice if you have any to offer.

I mentioned on Joel’s first day of school that he has a new paraprofessional working with him on a daily basis.  While it has taken me time to adjust to this new person (I really loved the woman who worked with him last year), I have tried to embrace her and treat her the same way I always treated Joel’s previous PP which is with the respect that I feel she deserves.  Despite my efforts to be friendly and open, I have felt that maybe (and this is the irrational part, so bear with me) she doesn’t like me so very much.  There.  I said it.  I’ve had people not like me throughout the course of my life for whatever reason and I have learned to trust my instincts.  I’ve tried to ignore those feelings with her and rationalize that maybe she and I are just very different on a personality level and we clash, or whatever.  The point is, and yes, I’m going to get to one, she is a significant player in Joel’s day and her attitude about things can positively and/or negatively affect how his day goes.

For example, last week there was a stomach issue that blazed through a few members of my household which caused some stress and behavioral changes for those who were affected.  Joel was one of them.  Because of this, we were about a minute or two late for school a couple of days, why? because Joel was fighting getting into his car seat.  Now, I know he has to be there at a certain time.  His dad knows this.  But, explaining this to him is where I am having difficulty because of the communication issues.

One of the mornings we were literally a couple of minutes late, the paraprofessional informed me that if we were not there before the bell rang at 8:45, we would have to drive up to the front of the school to drop him off.  I told her that it would not be an issue and busted my butt the rest of the week to make sure he would be there on time, which we were.

This morning, I pulled up to the school at precisely 8:42.  I know this because I was watching the clock like a crazy person because I did not want him to be late.  She was not there.  I waited for about a minute, not wanting to get Joel out of the car seat in case I had to put him back in, thus causing a meltdown just to drive back up to the front of the building and get him out again.  I got out of the car and walked up to the door and peered in through the window to see if I could see her in case she was just running late.  The hallway was empty.  I got back into the car and drove up to the front all the while talking to Joel in the hopes that he would understand me when I said, “Don’t freak out.  We are going to school.  We just have to go in a different door.”  Luckily, he didn’t meltdown.  What he did do was take off his shoes.  So, once I parked up front, I had to put his shoes back on and get him out of the seat.  The second his feet hit the ground, he went running.  I just barely was able to grab his hand and lead him, struggling into the building where his paraprofessional was standing in the office.  Joel ran past her and into the principal’s office where a meeting was taking place.

His paraprofessional picked him up.  He struggled to get out of her arms, which is unusual because when we drop him off at his usual location, he jumps into her arms.  But, now we were in a different environment and he wanted to explore.  So much for the importance of his usual routine.

I explained to her as politely as I could how even this very slight change threw him off, how he took off his shoes in the car and tried to run across the parking lot.  I then asked her just precisely when the bell actually does ring.  She said it rings at 8:45 a.m.  I informed her that I was there before then.  So, what time do I REALLY need to be there to avoid the craziness that this has caused?  She said 8:40 would be a better time.

**Insert mental scream**  Then why didn’t you say 8:40 a.m. last week!  We are literally talking about a two or three minute period!!

I did not say this, of course.  I took a deep breath, said goodbye to my son and walked out to my car.  If you want to get a point across to me, then treat me like an adult, but don’t try to manipulate me in such a way where it affects my son more than it affects me.  I went to my first class of the day and was barely able to concentrate because I was mentally writing this post and also mapping out how we were going to deal with this and also whether or not I might be wrong about something.

Husband and I have talked about the issue and we have decided that he will text message one of the counselors that we trust and stay in contact with during the day and let her know about our concerns for Joel and this somewhat arbitrarily strict adherence to the tardiness policy.  I understand the importance of being on time, but I highly doubt this particular person truly understands the dynamics involved in getting a child like Joel ready for school in the morning.  Yes, he loves school, but that doesn’t mean he isn’t going to one morning not allow me to put a shirt on him or comb his hair or brush his teeth.  Not to mention, the extremely aggravating fight we have been having with him lately about getting into his car seat, which Tardy policy or not, I am not going to put him in the car and drive with him unbuckled.  Forcing him or rushing him to comply only exacerbates the problem.

Like I said, I would highly appreciate and value any words of wisdom or advice.  And, of course, I will keep you all posted as to how this all pans out.

Therapeutic Virtual Temper Tantrum for Grown-Ups.

Everything started out so well this morning.  Joel was bathed, pull-upped, dressed and happy.  He ate some breakfast and watched Sesame Street.   I was hopeful things would continue along those lines.  He handed me his socks and shoes which is his way of saying, “Hey, let’s go to school.”  I explained to him that it was Saturday and school doesn’t happen on Saturdays.  We did, however, need bar soap.  He let me/forced me to put his socks and shoes on and we headed for the door.  He held my hand as we walked to the truck.  He cooperated as we opened the back door.  He  began to struggle as I lifted him to put him in the car seat.  I explained to him that the only way he was going to go with me to the store was if he sat in his car seat and let me buckle him up.  He still refused and tried to bypass it and climb into the part of the back seat that was not corrupted by life-saving car seats.  To show him I was completely serious about this, I brought him back into the house.

He yelled at me.  He ripped off his socks and shoes and then pushed them into my hands so that I could put them back on.  I asked Maya to go take a picture of the car seat with his I-Pad and put his socks and shoes back on.  She came back in as I was finishing with that.  I proceeded to show him the picture of the car seat and said “Car Seat.  You have to ride in this if we are going to go.”

We went back outside to the truck, this time with Maya who got into the back seat on the other side of his car seat in case he fought me again.  This time he seemed to get it and we managed to buckle him in with very little resistence.  I thanked her for her help and she wished me luck as Joel and I left for our mini adventure to the store.

He didn’t make a peep on the way.  I parked and got him out of his seat all the while verbally reminding him that he would have to ride in it when we were finished shopping.  He held my hand into the store.  I tried to put him in the cart, but he was side-tracked by a stack of plastic kids’ chairs.  I decided to do what That Cynking Feeling does when she takes her little guy grocery shopping which is allowing him to push the cart.  I was pleasantly surprised by how well this went.  I stood behind him with my hands on top of his to keep a hand on him as well as steer him along.  We found the soap and I picked some out.  I handed it to him and asked him to put it into the cart which he did.  We headed back to the front of the store toward the check out which did not (thank goodness) have a huge line.  I directed him to put the soap on the counter which he did.  The lady working the register was pretty tickled by Joel’s “helpfulness.”  She asked if he would like to carry the soap or if I wanted to.  I said he could (try) to carry it.  I paid for the soap and thanked the lady.  She said goodbye to Joel who, of course, did not respond.  Instead, he tried to push the cart around.  We put it where it belonged and walked out the store to the truck.

Of course, I was worried that he would refuse the car seat, but he didn’t fight as I put him in and buckled him up.  He gave me little kiss before I shut the door and got into the driver’s seat.  I kept telling him what a good little helper he was and cheered him on.  I also told him we were heading straight home.  Looking back, I wish I had taken a picture of our house or something and shown him that was where we were going.

When we pulled up into the driveway he didn’t make a sound.  I got out and opened his door and realized he had removed his socks and shoes on the way home.  I got him out of his seat and carried him into the house.  Before I could even shut the door he was melting down.  Big time.

I’ve talked about Joel’s meltdowns in the past and about how they can be violent.  I used up every meltdown technique I have and he slowly calmed down.  And, then he turned into the world’s biggest trouble-maker ever.  First, I made him a baked potato for lunch just the way he likes it with lots of sour cream.  He ate most of it and then dumped the rest of it out on the floor.  He did the same with his cup of milk.  Just dumped it all out onto the floor.  I sternly told him that was not appropriate behavior and cleaned it up.  Then he grabbed a bag of cereal off the counter (that I stupidly forgot to put back in the pantry this morning) and tried to dump it all out on the floor.  I was beginning to notice signs of an upcoming meltdown.  Mine.

I often joke around on this blog or try to always show the positives in my life, but I will admit, I have some low points.  I am riddled with the stress of our life, of the meltdowns and the worry.  My sister called the other night while I was feeling mildly ill to my stomach.  (I didn’t know it at the time, but there was a bit of a stomach bug going around and I was just beginning to feel the effects of it).  I told her my stomach was probably affected by the stress I had been under this week.  She was surprised that I get stressed out because normally “you’re always so happy.”  I explained to her that (A.) not only can I be happy and stressed out simultaneously, but also (B.) that I have three children, one of whom has Autism, I’m a full-time student as is my husband, and we aren’t exactly on the income level of the Rockefellars, blah, blah, blah.  I think she got my point.

But, I also get her point.  It’s the same point Husband has made in the past.  I have a problem internalizing things and not talking about my feelings.  And, every now and then, I want to scream and pull out my hair and lie down on the floor and flail my arms and legs about.  But, I’m a grown up and that isn’t very becoming of grown ups.  So, I’m having a “virtual temper tantrum” right here on my blog.

And, because I’m all for “pity parties,” everyone is invited to join in.  Pick a spot on my virtual living room floor, grab a tuft of your hair and scream about all of the things that just piss you off.

Here goes:

Okay, I’m feeling a bit better.  I’m remembering the handy adages about “Taking it one day at a time.” and “That which does not kill us makes us stronger.”  Yada, yada, yada.

….gotta go, Joel is peeling paint off the kitchen drawers….

I might just actually succumb to a real temper tantrum in the very near future.

Wordless Wednesday-ish: The Black Balloon

I was going to write this long review for this fantastic movie, but then I remembered I’m not a movie critic.  I think the trailer will speak for itself.

The Black Balloon.

Let me just say, this movie is the most accurate and heartfelt portrayal of Autism I have seen so far.  Or, maybe I should say this is what Autism looks like in my house.  (If you have Netflix, you can stream it from there.)

You May Say I’m a Dreamer…

Yes it’s my birthday. I’m 19 years old again. Enough discussion about that. I’m sitting here with a guitar strapped around my neck and Joely is bowing the strings with a piece of uncooked spaghetti. I think this could be the beginning of a new fad in music. I mean if some of the current acts out there can make it with what they are doing then we surely have a chance.

The other night I was on my way home from work and the family called and stated very boldly that they wanted cheeseburgers and chocolate shakes. I’m not not a brave enough man to say no to this and expect to make it through the front door unscathed, so I complied and headed to the nearest Braums. Later on we all had put a fairly good sized dent in the meal when joel shoved his plate away, which had most of the cheeseburger and fries left on it, and walked away from the table with his chocolate shake. You know it’s strange how temperamental he is about ice cream. I’ve never known a kid to turn down ice cream, but he’s done it before. This time not so much. No big deal, he ate some of his food and that’s got to be worth something. Soon I finish my meal and announce that I’m retiring to the living room to start a meaningful relationship with my recliner for the night and watch a Community on Netflix. And everyone else leaves the table in a few minutes. Joel gets a bath and heads to bed, Shell retires to the Bedroom to read. I hear something eating in the kitchen, more like inhaling food. Before I can get up the dog comes trotting through the living room, burps and glances at me like a teenager who’s an hour late for curfew. Awesome, Jack just ate Joel’s hamburger from the table.

Boy he’s really interested in these guitar strings.

Moving on to something more recent., for those parents out there with a non-verbal child. I’ll bet it’s happened to at least a few of you where you dream that your child is speaking to you. I had a dream that we were watching a National Geographic type show where they were doing something with Lions. Maybe hunting, maybe not. There was definitely a gun involved, and a Lion of course. And all of the family was present. One of the Lions got shot and Joel professed “DOooon’t shoooot the DOoooOOG!” And of course you think, him being non verbal, it would surprise me that he’s making a statement at all. That’s not what I notice in the dream, I notice that he’s mistaking the lion for a dog. In the dream I look past the verbalization of something offensive to Joel and address the fact that he’s overgeneralizing. Interesting, huh?

I’m hopeful that Joel will speak someday, but I’ll be extremely satisfied if he can just communicate with us. I think with as many sounds as he makes though someday we will see, excuse me, hear him speak. We all believe that he has vocalized in certain situations, outside of his meltdowns. Like when he’s excited about going somewhere, or when he really wants a bowl of cereal. Both Shell and Joel’s para swear up and down that he’s told them to “go”. I’d take that, outside of my dreams.

Now if you all will excuse me, we have a concerto to write. I think we’ll call it “Spaghetti on six strings in g minor.”