Deafness, Autism, and Hope

I've never really considered myself disabled. Am I? Yes. To make it simple, I'm deaf in both ears. To make it technical, I have a moderate bi-lateral hearing loss. I've worn hearing aids in both ears since I was 3. But I'm not disabled in the sense most people associate it. After all, I can do anything anyone else can do. In fact, most people don't even notice due to how well I can speak. (I spent a couple years in speech therapy for that and man did it pay off!) I don't consider myself disabled because it doesn't stop me from doing anything. It doesn't hold me back. It used to. But not anymore.

Lately there has been a lot of discussion comparing visible and invisible disabilities. So by those terms, I have a visible one, my son has an invisible one.

Are we different? Not really. We see the world very differently than your average non-disabled person. We are prone to suffer the same prejudices that others harbor.  Heck, I've even been fired from a job because I was deaf. (Hopefully he will never experience that...)

We both have issues with sound and touch. This may sound funny to you, especially when you consider that I'm deaf. However, as with Autism, there are varying degrees and grades of deafness. Some deaf people can hear frequencies that others cannot. (Yes FREQUENCY! Low, high, middle, all levels!) It resembles a spectrum if you need to think of a parallel.

As an added bit to blow your  mind... My alarm clock (which sits on the average bed table) vibrates. I "hear" (aka feel) the vibration long before I actually hear the alarm. Crazy isn't it? I can feel vibrations a little better than your average Joe. Just please don't slam any doors around me. :)

I have my own coping devices, just as he has his. And yes, I can get just as overwhelmed. We both HATE crowds. Really for the same reason. He can't process all the information at once and neither can I. Unlike hearing people, I can't filter the sound I hear through my hearing aids. I can't distinguish one thing from another or even figure out which direction it's coming from. It's simply everything, coming in all at one time, at the same volume, regardless of what it is. It is then up to my brain to actually figure out the who, where, and what and make sense of this jumble that is flying into my ears. Sound familiar?

I can't hear the upper frequency. Women's voices are often lost to me, especially if she has a soft or higher pitched voice. It's the same frequency that can send my son flying to the floor crying out in despair. Naturally, it took a long time for me to make that connection. Hard to figure out what you can't hear, right?

My ability to hear definitely affects my day to day life as much as Autism affects his. We both have to cope with a world that doesn't care to accommodate for us. I miss A LOT trying to hear and understand what people are saying. Some people speak way to quietly. Some are on the wrong frequency. I can't understand heavy accents. God help me if someone is talking to me over the phone. I have to actually sit and attempt to process the information really fast and retain it so that maybe, just maybe I will remember it later all by the time they finish speaking. It's the same for my son, but for a different reason.

For the record, this is why my mom goes to EVERYTHING with me (exception well visits and Autism related services visits). She probably doesn't even know this is the reason. But it is. I fear I will miss some critical piece of information or not understand something that is said because I missed a word or three.

Some people do seek to understand how I hear. I do my best to explain. The thing most people don't think of is how other senses are heightened because of the loss of one. I'm VERY sensitive to touch for example. A simple touch or brush can hurt. Tickling is excruciating... When they seek to understand how I struggle to hear, even with the hearing aids I use the crowds example. Sometimes it makes sense, sometimes not. Depends on the ability of the asker to see a little abstractly.

When I think about how it was growing up for me and think about how he's growing up now I can't help but want things to be very different. Thirty years ago disabilities weren't regarded the way they are now. I was ostracized all through elementary school. I was "different." I was misunderstood. I was the kid you didn't acknowledge.  Middle school wasn't a whole lot better but it was there that I was able to form friendships that I still have to this day. It wasn't until I got into high school that I developed the mentality that this is who I am, it's made me who I am, and if you have an issue with it then that is your problem not mine. My whole world view changed. By the time I hit college was was a completely different person. Even now most people do not believe that I was a shy, quiet, hardly-spoke-a-word, hiding in a corner girl. I'm far too outspoken, opinionated, and outgoing to give a hint as to who I used to be.

I want my son's experience to be different.

I was terrified when my son entered Kindergarten. Would those peers be just as cruel? Would they be able to accept him? Would his quirks separate him and keep him from having friends?

I was surprised by the answers.

He was welcomed by his peers with open arms. In fact there were a couple of older kids who tucked my son up under their wing and helped and protected him.  I was thrilled.  I was awed.  I wanted to hug those kids till they cried "uncle!"

Thankfully this has remained the case for him. We did have to change schools after Kindergarten to another school in the district who could provide more support. He was met in that school the same way.  I often hear about how kids tolerate some of his more odd behaviors, his mood swings, and even when he tantrums. They understand that it's just how he is. They don't hold it against him. They remain friendly, social, and helpful.

This gives me hope that things really have changed over the years.  That our innocent NT children are, at least for a little while, unaffected by the biases and prejudices of their parents for long enough that they can see the truth and reality for what it is. And in the process, recognize and accept these kiddos for who they are and what they can do. I just hope this extends into adulthood...

We have one more year before he heads off to middle school for 6th grade (he's in 4th now). I can only hope that through the pains and attitudes that often accompany adolescence, that this trend continues. He will likely end up in a school back on our side of town, away from these kiddos who know him so well.

Maybe we've just been lucky so far, but...

I have hope.

Dear Country Fair Employee...

Dear Country Fair Employee,

Thank you for what you did tonight. You did not know that my son was Autistic. You didn't know that he often appears to overreact to what seems like simple situations. You didn't know what could possibly have fueled his screaming panic all over the store. All you knew was that this 10 year old boy was missing a glove.

What you also didn't know, was that the glove was really his mommy's and he was borrowing them for his hands because he has sensory issues and can't wear his own. You didn't know that he is very protective of mommy's things and that he couldn't possibly accept losing her glove.

When you saw his distress you didn't judge, you didn't roll your eyes, you didn't even flinch. You simply dropped what you were doing, walked over to him, and offered to help find his missing glove. You did your best to keep him calm while his mommy finished the checkout. You walked around the store with him asking him about the glove and assuring him you two would find it before long.

You even found the glove and were rewarded with his beaming happy face. If his face wasn't enough, then surely his "thank-yous" were. Without even knowing my son has Autism, you simply reacted to a boy in distress, and immediately wanted to help. You gave him patience and understanding. Something we are not often met with at times like this.

When we got home my son commented on how "that 'county fair' employee helped" him out. He was so thrilled and awed by your kindness.

Thank you for helping him. And thank you for making this mommy thankful for people like you.

(Editor's note: For those of you unfamiliar with what a Country Fair is, it is a gas station and convenience store located where we live. The store was small so I was able to see my son's every move. It not only made it easy to note my son's distress, but also to see the employee's reactions and how helpful he was.)

I Just Need a Lot of Love, Mom

The past couple of nights have held the same cycle for us. The kiddo gets sent to bed. He comes downstairs pretending to sleepwalk. He walks over, curls up in my lap, and pretends he's fast asleep.

If I try to move him he puts on a pretty convincing performance of being asleep and unaware.

Well, convincing if it wasn't for the grin on his face. Oh how he warms my heart!

Tonight it was different.

On his way up the stairs to go to bed he dropped his container holding a bunch of food shaped erasers. He started freaking out about it because he knew he was supposed to be upstairs and he was still in the hall scrambling to pick them up. He gets upset when things don't go according to plan because he knows it can lead to "unexpected" behavior (thanks to his bsc for that gem.... /sarcasm) which really only serves to upset him more. I hear him scrambling and ask him what's going on.

I'm met with panic, whining, and him making his usual freak out noises.

I ask him again what is going on, hoping he'll just say it (I can't see him because I'm still in the living room). Same response. So I get up and to go see. He hears me walking and starts freaking out more. I walk in, assess what's going on, I tell him it's ok and to simply finish picking them up and get his teeth brushed.

I leave the hallway, hoping he'll calm down once he realizes that he was not in trouble. I hear him go upstairs and think everything is ok.  Not so much...

He's back on the steps and freaking out again. So I go investigate. By the time I get to him he's in full freak out mode. He's running to me, then away from me. He's covering his face with his hands. He's on the verge of simply falling to a heap on the floor. He can't find one of them.

I ask if he checked under the dresser in the hall. He's so busy freaking out that he tells me he can't look. Very typical when he's upset. He literally loses control and even if you walk him through something, he's just frozen and can't figure out how to do it. He just falls apart with any further attempt. So I look. It's not anywhere I can see. I tell him just to run upstairs and check his room where he has the others and make sure he actually dropped it.

Insert another freak out. I tell him he may have to go without for tonight as he has to get to bed for school and I can find it tomorrow.

Wrong answer mom.

This sent him totally over the edge. This is usually how he would respond if it was a Mario plush toy. He was crying, freaking out, total negative self talk, and talking about how he couldn't do without it.

Oy.

I have a feeling he never lost it since I can't find it anywhere. Next task? Get him back up to his room and see.

After practically carrying him upstairs, he goes running into his room and lands on his bed. His lamp isn't even on yet. This is a sure sign that all is not right. He's petrified of the dark... So I turn on his lamp, ask him where they are, and to check.

Wrong again mom...

He's now throwing himself around on the floor crying. Ok, so I will check. Lo and behold...

Yeah, he never lost it.

He immediately freezes again, panics, starts crying all over again, and repeatedly tells me he's sorry he didn't listen and check.  I keep telling him it's ok and he's just tired, he has it now, so let's go to sleep. I assure him that I love him and leave his room.

He comes down not too long later with a note and huge pout. I have him sit next to me and ask what is wrong. He's just crying. I read the note and it reads: Dear Mommy my haert (sic) is broken :( </3 :( :( from A. :( </3 </3

I give him a hug and tell him everything is ok and that I love him. He tells me he just needs some love.

Oh, this momma has lots of love to give! So we sit. Him snuggled into my side. I "give" him a piece of my "heart" (a total pantomime gesture he started long ago with me when he was sad and was missing pieces of his heart and would ask for pieces of mine to make his heart whole) to help his heart feel better.

He smiles. He feels better. He tells me he just needed a lot of love. I said, ok. Then he says: If I ever have too much love then I will always be happy.

Heartmelt!

We go back upstairs. I tuck him in again. He smiles all happy and snuggles into his blanket.

Half an hour later he is "sleepwalking" down to me and snuggles back in my lap.

I'd say all has returned to our normal.

As he lays sleeping and I sit pondering all of this I can't help but think: how true is what he said? "I just needed a lot of love." In that moment when he was upset, confused, frozen, etc, all he needed was a little bit of love for those dark skies open right back up again. And he knew it. His self awareness reappears again.

I admit, I met him with some frustration. He has school tomorrow, he's good at delays, heck I'm just tired after this long weekend... I stand corrected. He needed met with love.

The Way-Too-Eventful Shower

This post is brought to you by 80 year old pipes in an 80 year old house, the number 4, and the letter F (shortly followed by U, C, and K).

There are many reasons why I don't like to take my shower during the day if the kiddo is home. If you have kids, then you can relate to at least part of this, if not all.

The first reason is that my son's memory isn't that great when it comes to one thing (and I swear it is the only thing): don't run water when mommy is in the shower! If you have an old house like I do, you can relate. Someone turns on cold water, you get blasted instantly with scalding hot water. Someone turns on hot water, it's like and instant deep freeze.

Another reason is the interruptions. I like my shower. It is truly the only quiet time I get in my day. I love it when I don't work because I can take the kiddo to school, put on a hat to walk him in, then come home and soak in my blissfully quiet shower.

Usually I don't have that many issues. Maybe an interruption, usually a cat meandering in, but it's pretty uneventful.

On this lovely Saturday morning this was not the case.

Before I even get in there is a knock at the door. The kiddo wanted to tell me the cats were outside the bathroom door. Oooookaaaay......

I get in. I hear: thud, thud, thud, thud, CRASH! I don't even want to know... Could be the cat being chased... Could be the kiddo running and then not being able to stop... There's no blood curling scream so I let it go.

Blinding pain! HOT WATER ALERT! He apparently flushed the toilet downstairs. Or it was a hot-flash. I'm going with the former considering my age.

I hear steps running full speed ahead up the stairs, down the hall, then back down. At this moment I am thankful the steps are carpeted and allow him to keep his footing at lightning pace.

Another crash.

Ascending steps... Knocking. He quickly said something that I could not quite make out. I think it was in kiddo-ese.

Cold-flash! Verification that at my age I am not just having hot or cold-flashes.

Some rattling, like things falling. Perhaps he's emptying the dishwasher? (I later discover this is the case and he knocked a bunch of things out of the cupboard. He empties, I fill).

Hot flash! This one was brief. He must be getting water for his 100th cup of hot chocolate today.

I get out.

Yes all of this happened in a span of about 20 minutes. No wonder I'm on a short trip to insanity!

Welcome to the circus!

Last Friday there was a circus. Well. Sort of. The Autistic support and life skills classrooms at the school have been working with the physical education teacher on different skills. You know, rope swinging, balance beams, hurtles, the like. They even prepared a couple of songs and dances!

One problem.

My kiddo goes to gym with his regular education class (he is the only one who does). He kept saying that he couldn't do the circus because he was too embarrassed. I kept telling him he would be ok but to no avail. As chance would have it I subbed at his school that morning. At some point in my morning I looked up to see one of his aides at the door. She said he was adamant that he was not going to do the circus and to find them before I left.

Oh boy.

So before I left (and about 2 hours to circus time) I went by his AS room and found him there on the computer. I asked him why he couldn't do the circus and he kept insisting that he would be embarrassed. I knew there had to be more to it because this kiddo is active and agile and he could do everything that they were going to demonstrate for us.

I thought for a moment. Then it hit me. They started rehearsing for the circus around the time of his surgery in November. He goes to class with his regular education classroom, not his AS room. AHA! So I asked him, "Is it because you didn't get to practice enough?"

"Yeah."

Bingo! So we made a deal. I was going to come anyway "just in case" he changed his mind. When I got there I would sit right up front and he and his TSS would join me. He could skip the parade in and the little song and dance number (he's not a big dance-y kid anyway). But when it came time for the skills he would join his classmates.

This went somewhat successfully as he walked with clown feet, did a bean bag toss, swung on a rope, climbed some rope obstacle, and walked the balance beam. He skipped juggling, plate spinning, hurtle jumping, and scooters. Then he parked it right back beside me for the rest of the presentation.  And took pictures with my phone. Oh, the number of pictures he took!

As for the rest of the kiddos, they proudly completed their tasks while stimming, running lose, and screaming their little hearts out. I would say it was a day for all of us parents (and grandparents) to be extremely proud!

Migraines, trantrums, and "wth?"

When you suffer from migraines frequently like I do (the kind that never actually go away, leave you literally on the floor, eyes squeezed shut, completely down for the count and incapable of even making a squeak) you end up with a lot of time to think. Since you can't do anything else but lay there and you don't really want to dwell on the fact that your head will probably explode at any second, you try to occupy yourself. 

Today as I laid on the couch with two of my kitty pride purring away all cuddled up with me, while my totally awesome and thankfully pretty independent child kept as quiet as he was physically able, very mindful of Mommy's ailment, I had that opportunity. These are the kind of moments you have as a single mom where you have those "what if" and "holy crap" moments. While I have learned to function despite the pain, nausea, sensitivity, etc, that goes with migraines, enough to know that if something major happened I'd still be able to work our way through it, I still freak out a little over not being able to respond.

This thought path led me to think about how hard it is to be single mom with an Autistic child. I have pretty much spent the last (almost) 10 years raising this kiddo alone. I've been getting these knock down, drag, out, ha-ha you can't do sh*t today cause of me type migraines for over 15 years. Never did I think I would ever have to figure out how to manage the two. All I can say is, "Thank god my mom lives so close!!!!" Over the years it has become a less frightening thing for me as my son gains independence and knows what do to do if something happens. Granted he'd most likely call Grandma before 911, but I'll take it!

This then led me to think about how hard it is in the dating world to find someone who can honestly handle kiddos like mine.  Thankfully, I found such a guy in my fiance, M. He is actually a little upset that he is out of town right now and unable to be here during this current episode. All I can think is, "How lucky am I?" while I sit and smile to myself. In the past with guys I've dated, they've just avoided me like the plague. This guy wants to be here, knowing all he can do is curl up with me on the couch, make sure I'm ok, and take care of my son.

Holy golden jackpot, Batman!

This then led me to think backwards through our relationship and how M has been with my son. There was a very defining moment for me, early in our relationship, where I knew we'd be ok with M. We had been together for maybe just over a month.  I had to go to rehearsal and M said he'd watch the kiddo and everything would be ok. This stopped me dead, for two reasons really. One: I never leave him with anyone who doesn't know this kid inside and out, and two: I was sure that the relationship would be heading out the door in the days following... After all, at this point I was used to people running from our situation. After he assured me many times over and told me to get the hell out already, I went to rehearsal, frequently checked in, got reports that all was well. When I got home both were all smiles and they were watching Over the Hedge. I sent the kiddo to bed and everything seemed fine.

Then that defining moment happened.

When I came back downstairs I sat on the couch. M looked at me and said he had something to show me.  While I was gone the kiddo had misplaced a toy. At the time he was still very much of the mindset that if it wasn't where he thought it was then it was gone forever, stolen, missing, he'd never see it again. Well, apparently he lost something. M had recorded the ensuing tantrum partly so I could see what happened, but I think, mostly because he was actually quite amused by it. Why was he amused? Well... M is an extremely laid back kind of guy, very sharp contrast to me for sure. Not much ruffles him at all. My son can be overly dramatic and somewhat theatrical.  Picture a scenario like this:

A is laying on a stability ball, crying, screaming, yelling, just losing his mind, incapable of listening to reason.

A: It's gone! I'll never find it! Mom will be mad cause I lost it! (screaming continues)
M: Well, if you can stop crying long enough and tell me what it looks like then we can find it.
A: It's gone! I'll never see it again!
M: It's not gone, we can find it. Why don't you tell me what it looks like?
A: (screaming and sobbing) It's gone!!! I'll never get it back!!!! (more sobbing)
M: A, we can find it. I promise. If you can tell me what it looks like I can help you find it.

This goes on for about 5 minutes or so when...

A suddenly stops.... Looks at M.... And asks hopefully, "We can find it?? Really?"
M: (chuckling at how it suddenly and finally sunk in) Yes buddy, we can find it. What does it look like?
A: Let's look for it! Maybe we can find it!
M: (more chuckling)

The wayward toy was found within 5 minutes.

Throughout the exchange you could hear M give a little chuckle during the times when A got overly dramatic (which I will admit, those moments really are funny). What got me the most, was how calm M was the ENTIRE time and how he instinctively and simply talked A through the crisis. M just kept on talking to him, trying to talk him down and realize that the world was not ending.

That's exactly what I do with him. Well, bugger. And it just came to him naturally.

I never hesitated over the idea of leaving those two alone together from that day on. The two of them are like partners in crime hiding evidence of ice cream cones and comrades in arms when ganging up on Mommy. And let's face it, sometimes he's better at handling times of crisis than I am!

I snuggled down further into the couch pillows and kitty fur. Yeah, we'll be just fine. Are we lucky or what?

The First Week has Come and Gone....

Whew! The first week of school has come and gone and we survived. Both of us. We had a few homework battles but that is to be expected, right? It seems the Star Chart and earning the Mario plush toys has been a huge motivator for him and works wonderfully as a behavior modification plan. It has become one of my greatest ideas! Even his BSC is impressed. She even mentioned it in a meeting with her coworkers and supervisors! Whoo hoo!

Anyway, back off the side road... I've added a couple of things to his "required" items that are school related that I like quite a bit. Not only is homework one (being our biggest battle and I was forewarned he'd have math homework every night) but reading me a book is also one. On nights he doesn't have homework like Fridays and weekends? Well, he can read me another book. That makes two books and he can get his homework star! It's a great way for him to work on his reading fluency. (Can you tell I'm a teacher?)

This has actually worked out well. My fiance and I just love listening to him read. He'll do all the little voices of the characters and uses inflection! It's pretty impressive really. Not to mention how he does love to read. We have more books in this house then I have shelves to put them on! Every time the book fair comes to school this kid gets to go with a surprising amount of money and get several books. The teachers looked at me funny at first, but now they know! He'll spend every last dollar! He even helps the school aides set up the book swap and they'll let him choose a couple books in trade. He keeps bringing out books to read that I've never seen before!

What makes this chart even better right now? Since he has his own chores to do, like feed the cats and empty/fill the dishwasher and my favorite -clean up his toys, it leaves me a little more time to work on my classes for my Masters (Special Education for anyone who isn't aware). So far my house has remained relatively clean and therefore, my sanity is remaining somewhat intact. I HATE clutter. It messes with my mind. I also hate stepping on toys. Especially Legos. What makes those things hurt so much?

Anyways.... His ADHD meds haven't done a whole lot yet so his doctor doubled them. Hopefully we can see some change and we never get to "hell week." That week should be coming up soon. You know, the week where the novelty of new teachers and new classmates wears off and all hell breaks loose? I'm hoping that this year, it never happens.  Guess we'll see.

Another great thing? Sleep. Yep, I said it. He's SLEEPING! Since the melatonin dose was so high and not being effective his doc put him on a sleep aid and by golly.... It works! He's asleep within half an hour and out cold.... ALL NIGHT! Holy cow! No more 4 am eyeballs peeking over the edge of the mattress! HOORAY!!!!!!!!!!!!!  I've gotten comments about how much more rested he seems at school and how he's in a much better mood walking to his class in the morning than he was last year or any other year. Yes!  Since I drop him off in the morning before school starts now he is able to wake up on his own and start his own day before we go. This is a huge plus since it's his natural clock at work here! Dropping him off and picking him up at the end of the day also gives me the face to face time with his AS teacher and aides. They actually told me last week that since they see me every afternoon they weren't going to write in the communication log because it takes too much time and they'd just talk to me when I picked him up. Ok! We still write notes obviously if need be and can contact each other by cell phone.

So far 4th grade is shaping up to be a pretty good year for him. Here's to hoping it continues!