Sure has been a while...

It sure has been a while since I’ve written anything. Certainly not because I haven’t had anything to say. The past two years have been a bit of a whirlwind between the major teenage years (which are still passing), the start of high school, some big changes, major behavior challenges, and other events. There certainly is a lot to say. It’s more about finding the time to sit down and write about it. 

I’ve been telling myself for a long time now that I needed to get back to writing since it is such a major outlet for me. So this will be my attempt to do so. This may shift slightly from what is going on with my son to more what is going on as a family since the dynamics have changed so much. There are just some things I won’t write about, puberty being one, which is part of why I’ve been so silent for the last two years. That’s just no one’s business but our own. 

So to give you a quick update… Sparky is now a Junior in high school. (Holy crap! I know!) He is a week into the new school year and things seem to be going quite well. He decided during his Freshman year that he wanted to go to our local vo-tech program so he applied and was accepted into the Graphics Communications program and started last year. The program has been amazing. He started his 2nd year this year. The instructor is AMAZING with him. We are blessed in that his daughter has an Autistic son, so he has the patience, understanding, and approach that we need with Sparky. Right now he’s meeting all of his academic goals so he is actually looking to graduate on time with his peers. It’s taking a lot to sink in! In two years my baby is going to graduate from high school! This was something that was so hard to see when he was in Kindergarten…

I’ve spent the last two years working part time for an agency that sends me out to work with students in the classroom. Basically I run interventions and implement behavior plans that allow special needs/at risk children to remain in regular education settings and teach teachers and staff how to run the plans themselves. It’s stressful but very rewarding. My migraines have gotten so bad that I’ve actually been on disability for the last year, so I just work a couple hours a week to get out of the house and keep working with the clients that mean so much to me. My health took another nosedive earlier this summer when I had a couple SVT episodes in July. We are currently trying to figure out what is going on with that. We shall see what that does for my work and fitness future.

The redheaded husky has now been joined by a black/white sassy little girl that we rescued last summer. She is also a husky and came from an abusive breeder so she required a bit of work. She is a lovely little thing and is full of spunk and the perfect complement to the redhead. I was off for almost 5 months and it’s been a real trip trying to drink my coffee with my mug in the air while they run back and forth over my lap! I wouldn’t have it any other way though. Watching her blossom from this shy, terrified, uncertain puppy into this fully confident, sassy, quirky, hilarious creature has been completely worth it. The cats are, well, cats. Ollie is still very much Sparky’s love though he’s suffering his own health crisis. He suffered two collapsed lungs 2 summers ago and has been a medical miracle ever since. He’s still with us being the ornery yet lovable old man he is and we couldn’t be more thrilled. Though he has lost most of his teeth so now he has to eat wet food, so…. Yeah.

So that is essentially what we have been up to. I hope to have more to come on life, what is going on, the transitions into adulthood, and my insights into what we’ve experienced. There have been a few eye opening experiences that have connected a few dots. What a whirlwind it’s been!

No Island Here...

There is an article floating about from HuffPo about things that an Autism parent will never say. (You can see it here.)  At first I didn’t really know what to make of it. I still really don’t.  In the article it talked about how stressful raising an Autistic child is and how lonely.  It said parents are peacekeepers from everyone to the family to school to complete strangers.  It claims we are isolated as parents of Autistic children.  It talks about hurtful comments.

It gives the impression that it is all inclusive, that all parents feel that way.

I don’t.

Maybe I don’t have guilt over meeting my son’s needs because I only have him.  I am able to devote my time to him without “worrying” over “unfair” treatment to siblings.  My issue with this claim is really simple: empirical research suggests otherwise.  Research shows that NT siblings are enriched by their lives with their SN sibling, not hampered by it. They are more open and understanding of those who are disabled and more likely to help their peers.  They also harbor no ill will towards their SN sibling for any reason.  Imagine that: NT siblings of SN children RECOGNIZE that they are simply different in what they need and support how things happen at home. They get it and understand it. They also often grow up to help support their siblings in their adult life, making sure they have what they need.  So, why would parents need to harbor this “guilt”?

I’m not a peacekeeper. I don’t try to make everyone happy nor do I care to. I don’t have the time or energy for that. Frankly, I don’t give a rat’s arse what some stranger in the supermarket thinks of us. It doesn’t really affect me if they are that shallow and judgey. We don’t know them. It’s a reflection of them and their character, not us or ours. Our life will go on as usual. I don’t “try not to look bothered.” I’m NOT bothered.  I also will not be a peacekeeper at school. That’s just straight up push-over nonsense.  I will not allow ANYONE to walk all over me. I will not appease them to make them happy. It’s their task to make me happy. Plain and simple. If your school isn’t making you happy, get a lawyer, learn your rights. I also don’t try to keep peace in my family or with my friends. If they can’t respect my views and how I do things, then we will spend our time with someone who accepts us as we are. We won’t be run over by anyone because they are “offended” or upset by something we do. (Thankfully this isn’t anything I really have to deal with.)

Maybe that author is isolated, but I sure as hell am not.  You see, I put effort into my relationships with family and friends to maintain them and keep their value.  Do I compromise myself in the process? No. Just read my last paragraph.  For every one person who has dropped out of our lives we have gained 10 or more who are more than happy to share our lives. My friends and family have all done what they can to learn about my son so that they can support us however they can. We have some real people of value in our lives. I have also found my way into a larger community of people who share my experiences and are also raising an Autistic child (or 2).  I have never felt isolated.  I never will. I also don’t like the author’s assumption that my son isn’t part of the social world. He has friends. He loves people. He’ll chat the ear off anyone he knows. He plays with and shares interests with his friends at school.  We are also very close. We are not “isolated” as if we are two strangers living in the same house. My son will find a way to talk to me.  Communication is not always speech. He’ll write. He’ll draw. He’ll create. He tells me everything. Sorry, no isolation or lack of social interaction here.

Do I hear stupid things in regards to my son being Autistic? Sure. But it’s a teachable moment. Education is the single most powerful tool in the world. I also hear hurtful things about me, my parenting, and even my weight (how I need to gain a few pounds, for the record I’m healthy and fit and at a perfect weight). I get assumptions all the time about how because I’m deaf I should be dumb. Have I heard, “He doesn’t look Autistic…” You betcha. It boils down to the ignorance (meant by the true dictionary definition) of the person making the comment.  They simply do not know or understand.

Is raising an Autistic child stressful? Sure. Just look at how we are treated. Look at how anyone with a disability is treated. Time and time again, day in and day out, we are treated like we are less than human, not worthy to be alive or tended to. We cannot get the help we need, the services we deserve.  But that doesn’t mean it’s unbearable or too much to handle. I don’t think raising an Autistic is that hard, frankly. He’s just another kid. (See here.) Able and capable of doing what all other NT kids can do. We just do things differently. Our routines are different. Our needs are different. It certainly isn’t this down-in-the-pits, oh-woe-is-me, horror.

I do not worry about the future. My son will be just fine. He will live where he chooses to live, be it here or his own home, doing whatever he wants to do with his future. He is well loved by so many. Since we are not isolated in any way, socially or geographically, I have no concerns over anyone being around to lend him a hand when he needs it. This holds true whether or not I am here or not. I know he will be ok. I have confidence and faith in him and our circle. After all, we started the foundation to his own self-determination long ago. The seeds of self-advocacy and independence are well planted. What do I need to worry about?

We don’t "suffer" anything. We enjoy life. We are whole, complete, even content. Is it really that hard to believe?

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.

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.

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!

A Pastor's Response...

A couple weeks ago I posted a response to Autism Daddy's blog on the religious view that parents take on "God won't give us more than we can handle".  He even takes the time to pull apart what people are using to found it on from the Bible.  You can read his opinion here and yes, he also has a son with Autism who is not as able as my own.  I LOVE his response!!

You can read my original post here.

Autism Daddy's post here.

A Rare Glimpse: My Thoughts on Autism and God...

I recently heard the argument “why would our God want to give a child a disability like this?” in reference to the many who say things like “God doesn’t give us more than we can handle” and “God needed to place another child with Autism on this planet so he chose me” and an apparent favorite “it is a gift from God.”  I have to say, I kind of agree.

Before anyone fries me for that let me continue.  Everyone is welcome on my page regardless of your religion and I have no intentions of taking any kind of religious platform.  This is merely my thoughts on my views and the argument that was presented.

To also make this clear: I LOVE my son.  He is my whole world.  My rock, my angel, my beating heart.  I would not trade him for anything.  He is and always will be the best thing to have ever happened to me.  He really is God’s greatest gift to me.

That said...

It has been my mantra for a while what everyone else has been convincing themselves of.  I guess it makes us feel a little better to sit back and tell ourselves that this mysterious God wouldn’t give us more than we can handle.  I have to say, those moments definitely exist where we REALLY need something to help us get through the ugly.  It can make things a little easier to deal with.

But when you think about it, why on earth would God give people disabilities??  Especially some that are on the extreme end?  The argument was made by a dad who has a child with severe Autism.  You can read about it HERE. Severe as in nonverbal, headbanging, low functioning, mentality of an 18 month old, and the child is 9. He and I do come from different worlds of Autism.  Still, he makes a valid point. He was raised Catholic, but is no longer a practicing one.  He makes the argument regardless of one’s religion saying he doesn’t see how a god could possibly want to give someone this life of total disability.  Now he does view his son as a gift, as we all definitely do.  My son truly IS a gift to me, the BEST.  But Autism as a gift?  I agree, let’s give it back.

I do not wish to have a “gift” that is so “fantastic” that it separates my son from other kids.  I suppose it wouldn’t be so bad if he was completely oblivious to it, but he’s not.  He knows he’s different.  He knows he isn’t like other kids his age.  He honestly thinks there is something wrong with him and is always, ALWAYS, asking to be “fixed”.  He tells me all the time that he needs a new brain...  Would God want to make a child that miserable?  Where he asks all the time to be “fixed” and since there is no fix for him reverts to how he needs to just die?

I envy  Autism Daddy, because his son is truly completely and totally oblivious to anything around him.  He doesn’t know he has severe Autism and is different from his peers.  He and his wife never have to sit and hear their child ask to be fixed, or get notes written or hear their son say their two choices are to run away or die because he knows he’s a hassle and is different and can’t control himself.  Hell, I envy the fact that there are TWO of them at home being able to deal with their everyday reality.

I see people having conversations with children younger than mine and I envy them that.  In fact, it HURTS.  I still can’t have a conversation with my child. He’s 9 years old.  Sure, he’s verbal, very much so.  But he can’t carry on a conversation. Hell, 80% of the time you can’t even figure out what the heck he’s saying!  We both often get so frustrated we end up crying and upset and completely give up.  He can’t communicate well enough.

For those who want to sit on your little high horse and go “well why doesn’t he learn” or “why don’t you teach him?” Let me ask you something:  does your 1 year old child ask for a cup simply because you will them to?  Does your 6 month old walk simply because you tell him he needs to figure it out?  No.  No they don’t.  Life doesn’t work that way.  Years of speech therapy, behavioral therapy, and just plain therapy have not been effective in some areas (and we are ALWAYS trying new approaches).

My other peeve are the people who tell me, “I don’t know how you do it. I could never do it.”  Please.  I’m no saint.  I’m just a mom.  Doing what anyone would do for their child.  I do what I can the best that I can.  I’ve endured years of BSCs, TSSs, and therapists invading my home in addition to psychologists and neurologists with no end in sight.  I’m not perfect.  I yell at him for things when I know he can’t help what he’s doing.  I curse.  I cry.  Getting him ready in the morning or even just for a trip to the store is a nightmare...

I’m sure there are times when I could engage him more, do more.  But so many days I am just so exhausted that I just want to sit.  So he goes, left to his own means.  He may spend a little too much time on the computer.  He may be left to completely destroy my room/his room/the living room while I zone out staring off into space, just looking for even just 10 minutes of peace.  My day is so full of “Mom! Babble...” “Mom! Babble...” “Mom! Babble....” that even 2 minutes of silence is absolute heaven.

And yes, I look forward to bedtime every night.  The only time of day when I can actually get anything done and be somewhat productive.  People joke about their pets or their toddlers interrupting them while in the bathroom on the rare occasion it actually happens.  Guess what.  That is my reality.  That is my every day.  I can not go to the bathroom or shower without seeing the bright bubbly face of my son through the door or shower curtain (he hasn’t figured out modesty yet).

Let’s not forget that when he is at school/daycare my anxious wait or nervous checks at caller ID when the phone rings, just waiting for that phone call or written behavior report of what he did “wrong” that day.  His reactions and responses just don’t fit in the typical world.  It’s heartbreaking.  He doesn’t know how to respond.  He just reacts.  Often, it does get him into trouble.  The worst part is, he tries so hard...  So hard... To be good.  To control himself.  At least his peers are understanding and forgiving...

To make it better, we are venturing into the world of adolescence.  Yep, puberty.  So we are not only getting into the smell to go with the refusal of bathing, but the sassy back talks and lip that would rival a 16 year old girl.  At least once a day he threatens me.  At least.  He is also getting increasingly violent.  Choking, hitting, biting, sucker punching....  Hormones are a wonderful thing.  Let’s throw Autism, ADHD and all its fun and impulsivity, and the beginnings of puberty in one bucket and shake it up.

That’s a gift from God?

In the end all I’m left to do is cuddle with him every night (and randomly throughout the day), talk with him, and tell him how much I love him and how proud I am of him, always reminding him that it’s the behavior I don’t like not him. (With lots of hugs and kisses.)

Then take a deep breath in preparation for tomorrow.