And then there were two

I've been trying to write this for two weeks. I've written the main part of it in my head dozens of times, but when it came to actually putting down the words I've been unable to. I need to get it out, and I need it to be seen but I haven't been able to get it started. I mean, how do you start a post about having to commit your eldest son to residential behavioral care 1,2000 miles away for an undetermined period of time?

Oh. Like that, I suppose.

It's no secret that D has been struggling this year. It's not something unexpected, either; take the suckiness of 6th grade plus the start of puberty plus a crap-ton of acronyms (ASD, SPD, GAD, ODD, OPP, SOS, ETC) and I had expected this to be a tough year in some aspects. But there were a lot of good things about this year to help soften the blow; being in class with his best friend for the third year in a row, having a great para that he already knew and had worked with, familiar faces in class, and all around the school. He had been seeing the same therapist for about a year at that point, as well as a psychiatrist, therapy was going well-ish... We (the adults in his life) had high hopes for this year--realistic high hopes.

There were times when he met and exceeded any hopes we had for him. He was getting more comfortable in social situations, he was attending class more, his grades were good, and he seemed happy. Unfortunately, those times were outnumbered by the not-so-good times.

He had a somewhat predictable cycle of good to great to shittiest life ever to saddest kid back to shitty life then numb. And by predictable I don't mean the timing, I mean the parts of the cycle. The one thing this kid has always been consistent with is his inconsistencies.   And the cycle really wasn't anything new, the intensity was. He had always been self-injurious but this year he became more outwardly violent. He was hurting and he wanted others to hurt. There were weeks where he would spend all day in the Sensory room at school sleeping just to keep him and others safe.

Life at home wasn't much better. His meltdowns became aggressive and explosive to the point that I had to send A outside or to a neighbor's house to keep him out of the path of mayhem.  We addressed these things in therapy, had medication adjustments, worked with his case worker, we took advantage of crisis care, and respite care but they were just bandages. D was miserable. "Mom, I hate being like this. I hate being so angry and I don't know how to control it." A was miserable. "Mom, why does D have to threaten me? Does he know I love him? You can be scared of someone and love them, right?" I was miserable. The husband was miserable.

Towards the end of February after a particularly spectacular meltdown involving kicking me in the shins and cursing out his case manager, the subject of hospitalization came up. Now, he was hospitalized for a short time last April (three days after his birthday) as an acute situation. That means that he was in the hospital to diffuse the situation, and to ensure everyone was safe.  It was shitty, and it sucked, so when  his case manager Z mentioned it to me, my first thoughts were to last year's situation. And I did not like it.  But this would be a different situation, so the husband and I talked it over and I told him I would talk to D's shrink and get her thoughts on it.

I met with Dr. Awesome the next day and asked what she thought about residential hospitalization.  "I really don't know what else I can do from an outpatient standpoint."  We discussed his medication situation and that at this point the best thing to do would be to take him off all meds, clean out his system, and then start from scratch. "That is something that needs to be done away from home." Discussions were had, tears were cried, and decisions were made; He needs to be hospitalized.

My first goal was to talk to D and let him have some say in it. By that I mean the good ol' parental trick of letting him think it's his idea to go. He and I discussed it before bed and I told him that I knew he wasn't happy, and that we all want to help him, but we've run out of ways to do it here. I mentioned going to a residential center and assured him it would not be the same place he did acute care. He thought about it, and agreed.

Next step: finding a hospital. As I said, this was the end of February and I was hoping to find a 30 day program because his birthday is the middle of April, and we didn't want him to spend his 12th birthday in a hospital. Dr. Awesome put together a 131 page packet to send off to Tricare and to lots of residential hospitals. And then we waited. We got rejection letters from several places, we expanded our search and I started working with a woman whose job is to find beds for people who need help. While we waited we walked on eggshells at home. I knew it would be a temporary tiptoeing routine and to conserve what was left of my sanity, I let him get away with stuff I normally wouldn't. Nothing majorly terrible, but stuff that really wasn't worth a fight.

Once the decision was made, a huge weight seemed to be off of D's shoulders. He was looking forward to going as much as a kid can look forward to going to a behavioral hospital.  Patience was getting thin and the tunnel seemed to be closing up as more days passed without any good news.

And then it came. "D has a bed. The hospital is in Montana. His admission date is 30 March." That call came in the 24th of March.  We're really doing this. I'm sending my baby away. Holy shit, I am the worst person ever.

I knew on a cognitive level that this was the best decision, that D needed help that we just couldn't get him here, that this would end up being a good thing. Emotionally, I was a fucking wreck. When the boys were in school I would Ugly Cry for about 45 minutes straight up to three times a day. No exaggeration. If the tears I shed were pounds then I would be a skinny bitch right now.

This decision hurt. My heart hurt. My entire body hurt. I was going through my days like a zombie. I had to unenroll him from school, I had to find someone to watch A, I had to fill out pounds of paperwork, I had to comfort my son.  A knew something was going on, but we weren't sure when exactly to tell him. I had wanted to wait until closer to leaving but he overheard D and I talking about our flight. "You're going on a plane? Why? Where are you going?" I looked at D and the three of us sat on the couch. I asked him if he wanted me to tell A, or did he. D said, "No. I'll do it," and proceeded to be the most amazing kid in the world.

"Hey buddy, you know how I've been really angry lately, and being mean and trying to hurt you?"
"Yes. I don't like it."
"I know. I don't either. So I am going to a place to learn how to control my anger, and to be a better big brother."

Pay no attention to the sobbing mess of a woman on the end of the couch.  My boys hugged and snuggled and D kept whispering to A, "I love you so much," and I kept crying.


To be continued because I just can't right now.

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...

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.

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.

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.

YM and Seventeen did not prepare me for this!

I was saying good night to D when he stopped me. "Mom, I just don't understand what guys are thinking." I looked around to make sure I wasn't in a Seventeen Magazine article and realizing that this was happening I replied. "Well, you're a guy. What do you mean?"

"Well, a lot of guys are always thinking about b-o-o-b-i-e-s [yes,he spelled it out], and humping and sex..." I stopped him and asked him if he knew what sex was. "No. And I don't want to know."  Patti-1 Puberty-0



So I explained to him that people grow at different rates, and that as you get older your hormones change which leads to wanting different things. "No, I'll never want to think about stuff like that." I said, "okay," and told him that if he does change his mind, it's okay. It's natural. He then asked me what "fuck" means.

I paused, mentally slammed my face against a hot iron, and answered him the best way I could. "Well, Daniel, it's a crude way for people to talk about sex."

"Oh, like 'I'm going to eff.... someone?"

Yeah. Like that. He then mentioned hearing the word rape and things got serious. I explained to him what rape is and that no means no--when girls or guys say it. I told him it's not something to joke about EVER. He understood (at least, he didn't question it) and I thanked him for talking to me about this stuff. I told him that he can come to me with any questions, and that I was proud of him for talking to me.

I was getting ready to leave when I hear, "Mom?"

"Yeah, buddy?"

"What's 'humping'?" Internal face-iron.

"Well, it's when people rub their privates up against each other--usually in clothes."

"Weird. Good night, Mom."

I think we just had our first sex talk. Now, if you'll excuse me, I need to go drink a bottle of vodka.

Tuesday (sorry, can't think of anything clever.)

Daniel has his music program at school tonight. Tuesday. At 7:30.  From what I have been told by his Para, there is NO organization to this, the 4th graders are supposed to show up DURING the 3rd grade performance, then there will be a guitar hand-off between the 3rd and 4th, they will take to the risers and sing, play recorder, and play guitar. No rehearsal during the day to see how it will work out, nor will the 4th graders be meeting in a classroom or even the hallway to walk in together.  Curt and Mrs. Nehila would NEVER allow such a haphazard production.

Anyway, Tuesdays are Daniel's long day. He has therapy in the morning before school (and today's was tough), then school, then his acting club goes until 5:30. We don't get home until about six and then we have eat dinner, change clothes (Daniel, not us) and go back to his school for a concert that, by my guessing, will be 30 minutes MINIMUM. Also,his meds start to be weaning off during late afternoon/early evening and going into this situation with lots of chaos, and noise....I just don't know.

The more I think about it, the more I want to keep him home. Does that make me a bad mom? Obviously, if he really wants to go I will take him, but I have a feeling that he might be okay with it since yesterday afternoon he was already getting nervous about it.

This part of the Spectrum is hard: He is so talented and loves performing, but the pre-performance anxiety nearly destroys him. *sigh*

Brothers

Earlier, as we were leaving Dillion's.....

D: [pouting]
Me: What's wrong, buddy?
D: My heart doesn't feel good. I feel lonely.
A: You're not lonely, bro, because I'm here and I'm still your brother.

I smiled when I heard that, and I felt so proud of A. But then in that same moment I got scared because one day, that unconditional love A has for his big brother isn't going to be there. And it will be D's fault. 

While I hurt for D as he struggles and lives his life on the Spectrum, I mostly feel bad and sad for A. He has heard so much screaming and yelling, seen his brother meltdown numerous times, seen his parents physically restrain D, and also been physically hurt by him. There have been days that I have seen nothing but pure terror in A's eyes after doing something to D. (Don't get me wrong, A knows how to instigate, but he still doesn't deserve pure terror.)  He's heard his big brother threaten to kill himself and seen him pull a knife on me.  But A loves him. 

Maybe it's because I relate to A in a different way. I grew up seeing my parents scream and yell and throw things and inflict fear and pain on us kids. It kills me that A has to see all that happening. Granted, it's different (my parents were horrible, horrible people; D is on the Autism Spectrum), but I know how much it hurts to see things that you can't change--that you can't help. 

Then, on the flip side...A follows all of D's modeled behavior. Good AND bad. So he's started hitting himself, and saying, "I'm stupid, nobody loves me," and saying that he should be gone from the family. Earlier today he said, "Mom, just hurt me. I'm stupid."  He's been tested and he's not on the Spectrum; this is all just mimicry. Nonetheless, it sucks. And is why my 4-year-old goes to counseling. (Well, that and his dad being deployed.)

I don't know. My head's all over the place right now. I'm thinking it's a sugar crash. Also, I'm trying to get back into the habit of blogging so that's that.