Challenge.....reluctantly accepted

Challenge: Daniel is really struggling with being "different" this year. In class he was allowed to use a laptop to take notes because handwriting is no bueno. He didn't want to because he was the only one doing it. Today he had to take a test that was down in the Autism suite, with notes, and he didn't want to. Why? "I feel bad that my friends don't get this kind of help. I don't think it's fair just because i'm Autistic I get special treatment."

First of all, I love his heart. Next of all, how do I explain this to him so that he can understand and accept the help he gets, but not lead him to think he's entitled to it? By entitled I mean that I don't want to turn him into Joe Douche that says, "I don't have to do this work, I'm Autistic. Check out the IEP." No. He has special needs, and because of that is afforded assistance in various ways, but I will not ever EVER let him think that's he's a victim and that he can act as if he were one. Oh HELLS no. Not on my watch, Cap'n.

Social studies and science have been a struggle because of the notes and his teachers are working with his team (myself, paras and AS teacher) to come up with a fair compromise so he gets the knowledge, and does the work showing the teacher that he is learning. Because him avoiding class and having 2+ hour meltdowns at home at the suggestion of homework isn't doing anybody any good. But this kid....this kid. He thinks he has an unfair advantage when in actuality his help is leveling the playing field. This kid...

And this is a Tuesday evening

This has been an interesting evening with the two juniors. First, the elder asked me if he was gay.

Me: Do you like girls?

D: Yeah.

Me: Do you want to kiss girls?

D: YEAH! (Too much enthusiasm there, GNP, take it down a notch for America.)

Me: Do you want to kiss guys?

D: No.

Me: You're not gay.

Then I had to define some terms that he wanted to confirm the definitions of. The words were the F word, and Douche (bag). So I gave him a brief grammatical dissertation on the word "Fuck" and that it can be used as many parts of speech (his eyes started to glaze over when I was describing how it can be used as a transitive verb AND an intransitive verb). I also told him the meaning of it. Didn't go into as much detail with the Massengil object; I told him that it was used to clean and now it's used to describe someone who is a slimy jerk. He seemed satisfied. I managed to not shake my head off.

After that, the younger was getting ready for his bath and decided to "shuck my clothes off in the hall!" D asked him, "Shucked?" A explained: "Yeah. Shucking my cloths. You shuck corn because you have to take all the stuff off, so I shucked my clothes off."

Um, you're six. You are not supposed to be able to form conclusions like that. And stop getting nekkid in the hallway, weirdo.

This is turning into one of those nights that I wish I drank as much as I say I do.

*sigh* Tuesday

I'm grieving again.

When your child is given a diagnosis other than "super duper regular kid" you grieve. You're thankful for answers or reasons or explanations, but still, you grieve.

You grieve for the child you might have had.
You grieve for the future that child might have had.
You grieve for the fact that living a "regular" life will not happen for you.
You read "Welcome to Holland" about a thousand of times and wish you decided to just stay home.

You grieve.

And then, you get on with it. You accept it and you move on. You read the books, find the doctors, do the therapies, try the medications; whatever needs to happen to move on, you do. But then something will happen to cause you to grieve another loss.

I don't know; I'm probably being over-dramatic here, but I'm sad. Disappointed. Angry. A little hungry. And sad. Still.

We returned D's violin today. He doesn't want to play anymore. And that's all fine and good--he played for a year and has decided he doesn't want to continue. Doesn't want to try anymore.

What the fuck, man?

I know I'm projecting but that's why I'm writing about it, and not talking about it with D because I don't want him to do something because I made him feel bad about giving up the something that I would have LOVED to have had the opportunity to do when I was his age. Not the violin, but I wanted to play Alto Sax or Drums so badly. But I wasn't able to. And this kid has the opportunity and he tosses it.

Am I spoiling him by giving him these opportunities? To do music, scouts, acting, gardening, all sorts of things--is making available opportunities the same as spoiling? I will admit that my kids are kind of spoiled. Typical "I grew up poor so I'm going to give you things I was never given" shtick. I realize it and I work hard to not do it. As much. Certainly not as much as I would like. I get spoiling with items, but can you spoil kids with opportunities?  I'd like to think not, but I very well could be wrong.

It makes me sad that my son gave up something I wish I could have done. I don't know what that makes me.

Autism rant: Bigger, Longer, and Uncut

I really want to break things right now, but I won't. Instead, I'll angry-type it out and then chain-smoke until I calm down. Though, since it's Africa Hot, I don't think I'll smoke much.

D has group this summer. It's not really a camp, nor is it group therapy. It's a group of kids with varying degrees of special needs/mental health issues that get together four hours a week every Tuesday. Last week was his first week. I got called after he had been there for a little over an hour. "D is saying his stomach hurts really badly." He got on the phone and started crying and I knew in that moment he was fine. Physically. He manifests his anxiety in his stomach. (He also likes to hoard poop in his colon but that's another story.) I told the counselor I would be there to talk to him. I knew what the problem was; I had no intention on bringing him home.

Forty minutes later he had agreed to stay and give it a chance. When he got home at 5:30 he had good things to report. He was nervous, and uncomfortable, but it was fun. Okay, great. I'm really proud of you, kid.

Cut to today. He has group at one. The counselor comes to pick him up and immediately he acts like this outing today is  a total surpirse. Which it is not. I told him before STEM camp this morning, I reminded him when I picked him up from STEM, and when we were finished eating lunch. "I don't wanna go." Why? "I just don't." Fair enough, that's a piss-poor reason. Tell me why you don't want to go. "I'm scared and nervous there. I don't know those kids." Thank you. That's an answer. I then explain to him that in life, he is going to be presented with situations that make him nervous, or a bit scared. And that getting as comfortable as he can in situations like that is a skill that can be learned, which is why we want him to go to group. I finally talked him into going and told him that if by 3:30 you still weren't feeling comfortable, or having fun, I would pick him up. He goes off with Z (the counselor) and I go downstaris to play Candy Crush Soda (which is much more fun than the original Candy Crush, by the way).

Twenty-seven minutes later (travel would have taken about ten minutes; they left the house a little after one, so I figure he had been at group for about 20 minutes or so) I get a phone call from a Private Number. I knew who it was.

"Hey, it's T from group." *sigh* What's up? "Well, Daniel's thrown up all over the bathroom. He has no fever and he was feeling fine and participating and..." I cut him off. "Yup. He did that on purpose. He made himself yak. "Well, I was with him, and I didn't see..." No. You wouldn't have. He's good. He can sit there and will himself to vomit when he's super uncomfortable.  "Well, since he did get sick, he can't stay." I know. I'll be there.

I drove to pick him up in a quiet fury. When we arrive I'm met outside by D and T (counselor).  D starts talking about how the reason he threw up was because he was thinking of Bacon, the fetal pig they dissected today at STEM camp (he's doing Vet Med this week). T apologizes and I dismiss it; I understand why he can't stay, and don't blame them one bit. Barf is a no-go. A Go Directly to Jail card, if you will.

We've been home about twenty minutes and I haven't said one word to him. Because I know when I do open my mouth, it will be ugly. Because I'm pissed. And hurt. And sad. And disappointed. And so fucking furious I want to punch things!!!!!

I get it, his brain is wired differently. He has struggles and he is working to overcome them. I get that. I've been with him every fucking step. But what pisses me off is that this is something he needs to be able to do. He needs to know that when he's in a foreign/uncomfortable situation, he can't just make himself barf to get out of it. That's why we go over coping skills. That why we work on being able to identify Anxiety and deal with it before it gets completely out of control. Yet he refuses to use them. When he's at home and getting angry I'll mention several coping techniques he could try and I'm me with, "It doesn't work," to every one I list. He gives up before even trying and I know that's his perfectionist nature--I've tried three different skills, and they don't work. So nothing will work. If I don't try them then they can't not work.

And yes, I know he's young. His brain isn't completely formed and operational, and the parts that are operational are a leetle-bit wonky. I know that he's not happy with himself. I know that he hates the way he acts and is very remorseful after every meltdown. I also know that we are giving him every opportunity to learn and practice skills to help him live a better life. He's always going to struggle--evveryone does--by being on The Spectrum. He probably won't have an easy life. But we're trying to help him learn things that will allow him to live an EASIER life.

"But it's hard." NO SHIT!!!! I've been in and out of therapy for nearly twenty years (good Christ, I'm old) and it is work, and it's hard work, and it's shitty, uncomfortable, scary, annoying, frustrating work. But it works. It helps. It gives self-confidence in areas that it's needed to work on things that aren't the way you would like. And I just can't understand people who don't want the skills to help them have a better life. I mean, I'm lazy. Straight out, lazy. But when given topics by my therapist to work out, to experience an EMDR session that is so physically exhausting it's the equivilant of doing eight hours of manual labor, I'll do it.

Sorry. I'm not bragging or anything. I'm just so frustrated at my son. At the fact that I can't do this all for him. That I can't get into his head and really understand what's going on in there. That sometimes I want to give up.

Asshole. Couldn't even make it in group for an hour. Fucker.

Memorial Day

 Being a part of the Military community I have known people who are the reason for Memorial Day.  I know several Gold Star Wives and families.  I know that for them, every day is Memorial Day. And in all honesty, for those affected by their deaths, every day is Memorial Day for us, too.

I am sure that by now you have been inundated with posts about Memorial Day. "What Is Memorial Day?"  "What to do on Memorial Day." " If You Do Anything Remotely Fun On Memorial Day You Are a Horrible Person and Will Be Visited By Mormons and Jehovah's Witnesses Every Day For the Rest of Your Life You Horrible, Horrible Person."  I'm not going to write another one of those articles. I will, however, say my piece; do with it what you like.  I'm not the boss of you; not having respect on Memorial Day won't make me judge you any more than I already do.

Memorial Day is about remembering those who have died. It doesn't mean that you have to sit shiva for people you don't know, or even for people you have known.

You don't have to feel bad for enjoying the day. It is the "unofficial" start of summer. It is a long weekend for most people, and in most places the weather is finally nice enough to enjoy the day. Go shop. Grill out. Get drunk. Live.

All you really could do is remember. Just remember. Remember that this world is not just about you and your circle of friends, family, co-workers, innocent by-standers, or the guy you see every morning walking his dog.

Remember why this country was started in the first place. Remember how it started. (Spoiler alert: it was not an amicable divorce.) This country didn't just appear; there were a lot of people who worked hard and gave up a lot to make it so.

Remember that you have rights and freedoms. You have the right to save 60% off a new mattress, or to finally get that 384-inch plasma/radioactive spider-fueled TV you've been lusting for. You have the right to read this, or any other thing and roll your eyes. You have the right to do that, and more, but you are not simply entitled to them.

You have those rights because people greater than us sacrificed for it. They fought for it. They died for it. Remember that.

Remember that we are STILL at war. We are still training, deploying, fighting; that probably won't end soon.  Our husbands, wives, fathers, mothers, aunts, uncles, roomate's uncle's half-nephew by marriage are still dying.

Don't not enjoy the day. (Double-negative used on purpose here. It's my voice. Put that red pen down.) I know people who would be annoyed if you didn't take enjoyment from the day. So go shop, barbecue, swim, party, sleep, or whatever.

Appreciate that you can.
Remember those who have made it possible.
Then appreciate it a little bit more.

This really isn't about a toaster.

Note: I fully acknowledge that what I am about to post is possibly the most ridiculously frivolous problem one can have. That, in the entirety that is my life, if this is the biggest issue, then today is a great day. That said...

My toaster oven is about to shit the bed. We rarely use it for ovening...mostly for toasting. I'm thinking of going to a 4-slice pop-up toaster but I'm nervous about doing so. I can't imagine a situation that would necessitate constant ovening in my toaster and have often thought that a pop-up would be easier...especially for Alexander.

Big picture: this is not even in it. I mean, just today my best friend in high school and her husband adopted a baby from China; another friend is dealing with ER trips and public racially-insensitive declarations from her 11-year-old; I'm dealing with a new toaster. #FirstWorldProblems, indeed. 

In reality, though, I think I'm over-stressing about this decision because it's one that I can make--it won't be made for me by a trained medical professional. The results of buying whichever toaster will still be toasted bread and waffles. No medication changes, or violent outbursts, or trips to the hospital. At the end of the day, waffles will be made. There will be no tip-toeing around the possibility of waffles or no waffles; waffles will be served. And toasted.  

This should be an easy decision to make--the easiest one I've had to make in a while. A decision that has no bad choices. But I'm standing here, staring at a toaster oven and a 4-slice pop-up toaster with the worry that life as I know it will end if I choose the wrong one. And I'm sure I'm projecting my fear and unease about all that has happened the past few weeks on to a seemingly innocuous 

situation because I probably haven't fully absorbed or dealt with the past few weeks and it's easier to admit being scared to buy the right toaster than it is to say I'm scared for my son and his future. 

Whelp. There it is. I think I'll get the pop-up.

Mis-placed blame

For the record: I hate Autism. H A T E. If there were some way I could make my son not-Autistic, I would do so in a New York minute. I am not one of those parents who thinks my kid's Autism is a blessing...fuck. That. My kid? Sure, he's a blessing. Him being on the Spectrum? Certainly not.

Now, I may change my mind one day. I may come to see this part of him as a blessing. But right now, no. I hate it. I hate that he's in pain. I hate that he feels so bad about himself.  And before I hear, "Well, maybe he hates himself because you obviously hate him if you hate Autism," just shut up. I don't know why he hates himself so much but it does not come from me. Ever. So shut your judgy fucking face.

I hate that my baby hurts. I hate that he thinks he's a failure before he even tries. I hate that in addition to passing along my amazing eye color to him, I also passed Depression, which in Spectrum kids is taken to a whole other level.

Right now, my kid is broken. Not because he's Autistic, but for some other reason we can't figure out. But sometimes it's easier to blame the Autism, even though I know it's not its fault.

Oh, how far he's come....if only for a night.

So, D is in scouts. I had to take him last night. Meh. We get to the church basement and I find myself a seat away from the kids, and D takes a seat at the Scout table. Opening ceremonies, sacrificial lamb, all that stuff gets done and I get to playing some Trivia Crack. (Most appropriately named game ever.)  I'm half listening to these kids plan their menu for the upcoming campout and what I heard was cracking me up. Eight 10-11 year olds discussing if they should make steak or chicken, and ooh! Maybe we could bring cucumber soup. ??? The head scout-guy got them back on track and suggested some more reasonable fare. I have a feeling that a budget lesson will be forthcoming.

After all of that was finished, they played a game. It was a sort of one-on-one tug-of-war. But the boys had to stand on a block while trying to tug the other one down--gently. I saw the blocks and was very interested in how D would handle this. He's not very coordinated and his balance isn't that great. I was worried because I know how he reacts when he can't be PERFECT at something the first time he tries it, and if he "loses" whatever he's doing. It's an ugly sight and 9 times out of 10 it turns into at least a 30 minute meltdown. I was cautious, but I wan't going to stop him. This was his turf; I needed to see what he would do.

The kid impressed the hell out of me. First, he kept letting other boys go in front of him, which I chuckled at. That only worked for so long before one of the boys noticed he didn't have a turn. So he gets up on the block, wobbles a bit, but then finds his balance. Not surprisingly, he gets pulled down first and I had my Mama Bear armor on. He walked back to the back of the line to try again. Whaaaaaaaaa?

He was letting the other boys go and when it seemed to get to be his turn again he stepped out and said, "Hey, I'll be the judge so if there's a tie, I'll break it."  And that's what he did until the meeting was over.

Let me sum up why this is a big deal, for those of you reading who are wondering why I'm writing about this. D has big challenges controlling his temper. He is a perfectionist and has little to no patience for anything other than perfect (which leads to lots of meltdowns on account of nobody is perfect the first time at anything ever).  He is also beginning to learn how to self advocate. The fact that he tried to get up on the block with very little external encouragement in the first place is a major accomplishment. He then kept himself in check when he didn't do as well as he had hoped.

HE THEN ASSESSED THE SITUATION AND PUT HIMSELF INTO A POSITION WHERE HE COULD PARTICIPATE BUT NOT CAUSE HIMSELF ANY STRESS!!!!!!!!!!!

In the past he would have just walked away. But he stayed. And participated. On his terms, but his terms were within the boundaries of the activity.

THIS IS SUCH A HUGE ACCOMPLISHMENT!!!!!!!!!!!! He did this all on his own!!!! This is a big deal for any Special Needs kid, let alone one on The Spectrum. It's moments like that which remind me that it really has all been worth it.

After the meeting we were driving home.
Me: Hey. What you did tonight? That was awesome.
D: Menu planning?
Me: No. I was watching you during the activity and you tried even though you knew it would be tough. And when you didn't get it the way you wanted to you didn't retreat. You stayed, and chose a role that would be helpful to everyone. You assessed your situation, and you made choices that were in your best interest, but that didn't negatively affect everyone else. (Yes, I talk to my 10-year-old like this.) I am so proud of you, dude.
D: (blushing) Thanks, Mom.

Now, I'm a realistic Spectrum mom; one good day means one good day. But this was a glimmer of hope--a view of how he might be as he gets older. With lots of practice, and lots of therapy. Because five years ago (when he was newly diagnosed) if someone had said he would do what he did last night I would have laughed. And punched that person in the throat. Hell, if someone had told me LAST YEAR that last night's situation will happen I would have been pretty doubtful. Not throat-
punch worthy, but definitely skeptical.

They're in there--all the tools he's been learning. And it seems like he's recently figured out the code. So proud of him.

Dear Special Needs parent

Somedays, in the darkest of days you may think, albeit briefly, about loving your child. And if you do. It's hard to remember sometimes, and it's hard to realize why you love him.

He is clothed and fed. He lives in a clean(ish) home. He struggled in his early life and you doubted yourself and every decision you made/didn't make. You needed help. You asked for help.

You called the doctors, and therapists.
You fought.
You dealt with the diagnosis.
You mourned.

You did the research and found where to live. You found him a doctor, a psychiatrist, a psychologist, a speech therapist, and occupational therapist, and even a case worker. You filled out the forms admitting that he needs more help than you thought.

You pick up his medication.
You drive to school with his meds if he leaves for school without taking them.

When the phone rings, and you see the number of his teacher your stomach clenches and upon saying "hello" you're either greeted with a sigh, or with an "Everything's okay! I just had a question."

You answer that phone. Every time.
You meet with the teachers.
You meet with the therapists.
You're on a first name basis with them. And the principal.

You think about the "What ifs".
You wonder how much farther he would be if we had that diagnosis two years earlier.
You can't go back, blah blah space-time continuum, blah blah, flux capacator, blah. But still...

You read the books.
You visit the blogs.
You laugh when he says things to his para like, "You're a bastard because you won't let a sad boy call his mom."
You cry when he says, "I hate being Autistic!"
You hate it too.

You do so much, but  you still doubt that you're doing enough.

You love him.
That's love.


Sometimes we all just need a reminder.