A Haunting Week

This has been a week that laid me low. James' triennial IEP is still in progress (we started end of October) and no one is going to be really happy about the final result. I am very discouraged about the gap between my perceived service needs for James, the IEP I agreed to last June, and what is now being offered by the district. It seems to be a grey area, as concessions have been made on both sides, nothing is hugely out of compliance in this new version of the IEP, but I am disappointed and have lost faith. This is what happened to James when I agreed to move him out of Full Inclusion and into Special Day Class.

If any on-the-fence parent is reading this, listen to your inner voice: don't move your child out of Full Inclusion if you don't feel right about it.

I do recognize that James got less out of Full Inclusion every year, due to his developmental delays and processing issues. I do recognize his school is giving it their best with what they've got and there are good people trying to work with us. It's just not enough for James.

If I made more money, I'd shell out for outside services and soldier on, grumbling along the way. I don't have that option. I have other issues that are now more important. Big changes in the family (it's coming apart), mental illness issues that desperately need addressing, and extreme financial crisis. Right now it's constant, never-ending, and no resolution or coping schedule in sight.

Then Wednesday, the massacre at a Regional Service Center in our state. Just like the one we go to for James, but in another region. It's gutted me. Not only because an organization that's part of our lives became a target for murderers, or because of the horrible loss of many kind people with families near a big holiday, but because of a worst-case outcome between mental illness, despair, the huge and dangerous (and widening) gaps of haves and have nots, and guns.

The Us is trying to exterminate Them. Think Trump hate, Planned Parenthood attacks and defunding, police shootings, and radical religions of any kind.

Guns are protected more than people. I still cannot believe this.

Our country is ignoring history and turning into a place of fear, hate, and exclusion for those "not like us". I am looking at you, US Governors who want to exclude Syrian refugees. How long before this "Them" turns me and my family into "Them"? It doesn't feel like a large step. So yeah, now I feel threatened too, in my own country. 

And for me, I am not making enough money. Wages in my area are horrible and not what they were, pre-recession. I cannot support my family and it is breaking apart. I feel stranded. I know I am not alone. Not looking to throw a pity party. I do have some help and support. This is how I feel when I am laid low. I am pretty sure it's going to get worse before it gets better. I hope I can take it. I'm pretty sure I can.

First Day 2015

Not sure how I feel about this school year. For the first time in 6 years, James is not starting out as Full inclusion. It's heartbreaking for me but James seems to like it. It's been his easiest start back in years.

Glad it is easy for him because everything else is a mess, from the constant construction on-site all year to the fact that no one still can tell me what his Special Day Class routine is like to the fact that the district is asking me if I have the original signatures page for the IEP meeting we had in June.

On top of that, the comparison between the organization and seemingly effortless support at his sister's new school and the broken mess from his school district ... after all our efforts ... I must confess, I broke down and cried after dropping him off that morning. I feel like I've failed him and he's being lost down a hole.

When Dancing Goes Bad

Found this on Sheri Venner's site

I am borrowing this image tonight. I really need it. It's been a stinker of a day on all counts.

The kind that makes you feel like you feel like you are under constantly attack, and to cry would be fatal. Because you have to go on. But not good things keep happening.

Definitely the phone call from James' school to come quick, there was a situation with him in the bathroom was a tough one to get. Turns out he was dancing there, sans pants, socks, or shoes, and singing lalalalala at the top of his voice, refusing to come out. Thank heavens his undies were still on. And this is a new one. It's his second big melt-down in a week.

My lunch hour went to flying to the school, getting him to calm down and come out (along with his Dad, who brought him clean pants). James went home with his Dad and I stayed behind to try and figure out what the heck happened and brainstorm plans to head off/deal with similar situations. We had some good ideas. More breaks, in essence, until he settled better into the new grade/school year routines. And options for working in a quieter, pull-out room. Also, more extra clothes in his backpack.

He has a really great team working with him. I hope we can get him back on track. I know he did not enjoy the washing he got in the tub tonight. I made sure he understood it was because he spent time in the bathroom at school, and that his hair was washed because he also (I was told) laid down on the boys' bathroom floor and refused to get up. Oh my goddess.

At bedtime, he kept telling me about his saga in the bathroom. He still hasn't told me why he did it. I don't know if he can. I told him places for dancing at school included the playground, parties, and the O/T room. They did not include the classroom or the bathrooms. I hope he heard this.

And no, his homework did not all get done. He did get dinner, cleaned up, and into bed on time. And tomorrow is another day.

The incident today at school is just one of several hard things I had to deal with today. I am not going into the others here.  Suffice to say I like this quote from Winston Churchill:
"Success is not final, failure is not fatal: it is the courage to continue that counts.”

Also, the quote from Ursula LeGuin's The Lathe of Heaven:
"To let understanding stop at what cannot be understoof is a high attainment. Those who cannot do it will be destroyed on the lathe of heaven."  - Chuang Tzu

I'm A Real Live Wire

I haven't been posting.

It's not because things aren't happening. Oh no. Quite the opposite and much of it not fun. Some I can't because it's ongoing, and it's all I can do to keep from being swamped by it all.

Family health issues, severe problems at one school, increased support duties for me, and worsening financial outlook overall. It's all one big smörgåsbord of challenge and angst. One of those special times when family and friends offer support but most of the toughest things that need doing seem to have my name on them.

So for all you Talking Heads fans (yay), here's reassuring you that I'm not a Psycho Killer, I have plenty to say. It's just going to be a while before I can put it in this blog. I'm not planning to run away.

So Glad It's Saturday

Oh my goodness, what a lot has been packed into the past two days. School worries already and a homefront crisis. For the win, I have a sinus cold. So I was very glad to not have to get up or go anywhere soon this morning.

Remember that post about me being glad that James is talking more and initiating conversations? Well that was ironic -- he was asked to leave class on his first day of school for talking too much during class. Ouch. He actually left class twice on the first day -- one was related to his aide's break schedule. So now I am walking the fine line between "what the heck do you mean by pulling him out of class on the first day?" and trying to find out what's going on and seeing what I can do to help make sure James stays in class while remaining engaged and behaving appropriately. I also want to make sure that he, his class, and aide are all good fits for each other. I know, I know -- but I'm his mom. Who else ya gonna call?

Speaking of calling ... I can't reach his services coordinator by phone. They took away her portable, put her somewhere new, and no one seems to know how to get her up and running on her new phone. Um, I know start of school is insanely busy ... but I also worked in Facilities -- betchya I could get it up and running without waiting for the District IT folks, but I digress.

My plans for observing James in class on Day 2 were foiled by a financial crisis. There is nothing like panicked phone calls from your partner and the fear of financial insolvency to get that ol' bp up and running, you betchya! I do have mad skills in bureaucratic process and can sometimes remain amazingly calm in a crisis. These helped to resolve the worst issues before 4PM, but by then James was out of school. I was told Day 2 went much better and there were no time outs. I am still going to observe his class next week ...

By 5:00PM, I was at my daughter's campus, looking at class lists. Five minutes later, my heart was in my shoes. She was in exactly the classroom that she wanted, but I think I can read between the lines and now am concerned that she is being left out of the academically motivated group of kids at her grade level. After the last few days, I am trying to breathe deeply and remember the good things -- like the fact that she is in an excellent school and has friends there. That she will be starting 4-H next month and there are 2 more grades after this one.

That maybe I can't see the whole picture because of my fears.

Because this week, there seem to be so many of them around.

I need to close my eyes, have a little faith, and visualize ... with intent.

This is how I need to move forward.

SOOC: Friday Brackets

Friday was a very strange and sad day for me. I am still trying to process it. Here are some shots from the morning grocery run, when I was dealing with the usual schtuff. The magic lens and Trader Joe's work well together:

And here is one that I took at the end of the day, after hearing some very upsetting news:

It was a campfire/ranger talk in a local park at sunset. Those massive redwoods, with the golden sun setting behind them and the evening breezes whispering in the boughs overhead, brought me some comfort. It made it easy for me to say some prayers for people I care about.


I'm participating in the SOOC action at Marvelous Mommy's blog.
Come on over to see more or join in.

Sunday Trip to the Med Center

After sleeping beautifully for two 10-hour+ stints and responding to OTC pain meds, I settled into waiting out the GI bug. I called in sick to my work shift and sent an email to James' teacher.

Then James started crying and moaning again early this morning, and I could not get him started on the acetaminophen. He ate only a little and drank less than yesterday. I asked him to point where it hurt and he consistently pointed to the right side of his abdomen.

So I called the advice nurse, who confirmed there was no fever, no yamminess (a polite euphemism for result of nausea),  and that he could walk. She booked an telephone appointment with an on-call doctor for later that day. This is a person who knows James, so I felt better about talking with them.

We had our call, and to be on the safe side, she had me bring him in this afternoon. After a friendly and thorough exam, new diagnosis is: constipation. Back to square one. We did another blood test just in case, and this one did not go smoothly.

I am now trying to figure out how to get mineral oil into James without triggering his gag reflex. And not pound my head against the wall until all is calm once more.

Deep breaths ...

SOOC Saturday: In the ER

New pediatrician at the med center, plus extreme symptoms with a residual of autism, equals a day in the hospital ER.

Do you know how many times I have been to the ER/hospital over the last year for my family? Too way damned many, that's how many.

Let's just say it's averaged more than once a month.

James was a patient kiddo through it all. He hurt like the dickens and fought the nausea like a champ. He did his best to communicate with a team that was not only new to him, but also unfamiliar in dealing with an Autistic pediatric patient.

He was so good about being poked and transferred from car to wheel chair to bed and then back again. I am glad I was able to talk them out of the ambulance ride. That would have stressed him out so much more.

 Trust me, you do NOT want to be watching Dora the Explorer like this.

While I am very grateful that we have some form of medical coverage, the copays just shot our monthly budget and added to our credit card debt, despite the weekly chunk that is already taken out to pay for said heath care.

And while the ER rocked and both the medical and administrative personnel in both facilities were attentive and lovely to us all throughout the long LONG day, I now know that I will also need to change pediatricians for the kids. Some things you can just tell are into going to work the way you need them to, true?

Yes, this so could have been a lot worse. I am very thankful it was not. It came at the tail end of a really nasty week, however, and it knocked me for a loop.

Still, there were parting gifts:

This is our life, straight-out-of-camera (well, some cropping was done in the interest of privacy issues); linking to the SOOC action at Marvelous Mommy's blog.
Come on over to see more or join in.

Bad Day

We had a Bad Day yesterday. For James it actually started on Wednesday, the day I had to be at his IEP progress meeting. He'd been having a couple of rocky weeks with extreme testing and not doing classwork. All this week I made a special time to talk about his day and talk about what was appropriate behaviour and how his day went. I cut back on his iPad time and started having James practice writing his spelling words before school. Wednesday school day went better.

The Respite care lady, however, reported that James was naughtier than the dickens at home. For a while, he did well, eating an afternoon snack and then getting to play on his iPad. Then he got frustrated with a game and started to smack the iPad, which he *knows* to not do. So the iPad got taken away. He threw a yelling, crying fit that startled the Respite care lady, because James hasn't tended to do this, although he's been doing it more this year than before.

Then he went into the bathroom and smeared toothpaste ALL OVER EVERYTHING. Yeah, Time Out time. He was constantly testing both her and myself so that if he was not in his room on a Time Out, we were constantly having to stop what we were doing to discipline James. Things in his mouth, chewing on books ... all things he knows to not do and hasn't done in a long while.

What to do? Well, first off, I had him apologise to the Respite care lady. James was sorry, and he gave her a hug. Then I used his Activity board (with anything electronic removed) to chose a better activity. This helped, as well as giving him some spelling word writing exercises when he started to drift loose again. He went to bed early that night I tell you!

Come yesterday, James did some spelling, had a small amount of iPad time, and then went back to spelling. I both needed some time to fix breakfasts and lunches as well as wanted to give James some practice with starting, stopping, and transitioning activities before school. The morning drop off went well. When I came for the pickup, however, I could tell things had gone badly somewhere.

James was crying profusely and looking miserable. His aide had that patient, yet strained look. Evidently, all had gone really well, until the last part of the day, when his aide left for a few minutes to go to the office. His teacher gave James, as a reward for good behaviour, some computer time, as he'd finished all his work. The problem started when his teacher gave him a heads up about stopping, and then getting off. James threw a huge temper tantrum. Then he started hitting the computers. Then he kicked the teacher, and would not apologise. O.M.G.

First, I asked James, "Did this happen?" and he said "Yeeeeess!!!" while sobbing. Then I had him apologise to his teacher. I held his hands and told to beathe with me until he calmed down and stopped crying. We all discussed what happened and agreed no computer time for James at all for the rest of the week. No iPad time at home until I hear he had a good day (not perfect mind you, but making good effort, completing a reasonable amount of his work, and showing good behaviour).

At home, I told James that I loved him. I said I was disappointed to hear that he kicked his teacher and hit the computers; that these were not acceptable actions and therefore no iPad for the rest of the day or next morning. I helped him write a "sorry" letter to his teacher and we worked on his spelling words and his reader books. We had a much calmer day at home. This morning was good as well. My fingers are crossed.

Cascading Negativity

I tell you. Some days are just out to get you.

So, after a peaceful morning (for me), the afternoon was tense. I walked into a household of unhappy people who coincidentally had not eaten in over 3 hours. I was also blamed for the kids being moody because I am too soft on them. Um hmmmmm. You know, I could be wrong, but I don't agree. See, there are these things called autism and sensory overload and they live many places, like our family. Plus, we've all been stuck together in this house for four days -- so throw in cabin fever. I got out lunch STAT and 3/4 through the meal things began to even out.

Then I announced the kids were finishing up homework that had been missed while out sick. Oh the whinging and unhappiness. My husband had had enough and was trying to get his work done in another part of the house. Can't blame him -- it's about the only way to get things done when the kids are home.

I gave management my best shot over the next two hours. Steadily coaxing my daughter through a review of fractions at the homework desk. Attempting to get James to sit down and work on his spelling words at the kitchen table. Trying to keep them from looking at each other and derailing the process. Keeping my voice calm (yeah, that's a neat trick -- I "pretend") and things moving.

James really didn't want to write and he had two time-outs for not cooperating. He kept fretting over a baby tooth that's been lose for weeks. Finish writing a word 3 times ... try to get the tooth; repeat. Finally, about word #6, he yanked it out and lost his mind to excitement. It took me ten minutes to get everyone really refocused and the tooth secured in a ziplock bag and stored in a cupboard. Many moons later, James finished his spelling. While his sister looked over her paperwork, I had him read his test story for school. That went much better than the spelling. Yay. Break time in his room with some DVDs on my old laptop.

Focused on daughter in the family room, with several pages of review and a practice test to complete. I walked her through several questions ... and privately wondered why they are teaching some fractions the way they are. They seem to be doing basic algebra already -- treat it like algebra, not a chart. Daughter says it helps her to have me near her, so I sat quietly near her, exuding calmness and mathematical genius. Or you know, whatever ...

Her work checked out, but she could not find her sheet with her spelling words. Oh well. Someone is going to have to be quick on her feet for that makeup test! We made scones from scratch to celebrate, and left a voicemail with a classmate who might have spelling words. Yes, it's now in the midst of Superbowl Party Heaven ... I can dream (in vain, as it turns out).

So now I start dinner. I am trying to MAKE meals from scratch for my husband and I: chicken breasts with veggies in a casserole dish, baking in the oven. Also frying some chicken on the stovetop while using the microwave. We live in development housing that was built with quantity favoured over quality, shall we say, and the appliances are really, um, underwhelming? So ... the microwave over the stove gets fried and starts emitting a really nasty buzzing noise. Won't cook. *Sigh*, okay ...

Finish dinner prep, taking more time to cook without the microwave, and ... the microwave's fan starts blasting on all by itself while we're seated at the table, sending James into fits of crying and screaming. It must be physically awful for him. It's really hard for us to hear him and try to calm him down. I bail out the tiny tea cubby so my husband can unplug the zombie fiend that is now our microwave. Takes minutes to calm James down. My husband and I, not so much. Meal, while delicious, has FAIL stamped all over it.

My husband has been home more often than usual this past week and kind of ragging me for how I do things around the home. I am not perfect, by any means, but I have been doing the best I can, choosing my battles between tantrums, cleaning the house, getting homework done, working on AB challenges and general child rearing (as well as doing some work on the side to bring in a little money). It's been I doing the choosing, because every week day my husband has to leave the house before breakfast and gets home around their bedtime.

Well, this weekend he wants the kids to cut out the chips at meals and eat fruits and vegetables instead. A good idea and I invited him to try. Hello, frustration and rising blood pressure -- I know you well. Our daughter did end up eating some of the new foods and got better about it each night she tried. James at first flat-out refused. Tonight, he was made to eat a carrot sliver, and I remembered why I choose not to fight this battle with him: he threw up all over the kitchen table and started crying and choking. My husband was livid. Ten minutes later, three people were in bed, unhappy but safer from the cascading negativity. Good God, I hope so!

Urban Bankrupt Life

My life is more than a little bankrupt, right now (from the Urban Dictionary). You see, I had more than a few surprises hit the fan about 10 days ago. Not my father this time. My husband. It started with a call from his MD as I was literally in the car, trying to pick up James. And no, he couldn't talk with me in depth and I could not call the school to say I'd be late picking up our son and then call the doctor back -- he was off duty, actually. He was just basically calling to tell me my husband's health was in danger of catastrophically failing and that I should meet him at the hospital. That's all. And a Happy Friday to you too, buster.

Before a week was out, I had panic discoveries of an unpleasant nature at the bank and with some utilities. I asked for financial assistance. I asked for support. I emailed heads-ups about extra crazy chez nous to the kids' teachers, who valiantly tried to support me as I tried to hold our world together with a couple of crochet hooks and one hell of a headache. With a lot of help from some very nice relatives, friends, and neighbours, I've so far been able to do it.

I feel like I'm caught in the middle of a deadly game of He Said, She Said, between my husband and his doctors. I'm actually seeing a lot of validation in the doctors' concerns, yet trying to not just believe anyone. Christmas is coming. The kids' birthdays are happening over the next three weeks. Please, just let us ALL make it through. Please, let's make some good changes and stick with them. So far they have. But how far will this go?

What do you do when your spouse, who is trying as hard as they can to be a good person and keep providing for the family, makes some bad choices that threaten their life and the family well-being? How do you keep a balance for your kids? How fast can your special needs child acclimate to new and bewildering routines? How the heck do you remain calm and not let the children know that one of their parents has been basically flirting with death?

Man, I don't know. I am making it up as I go along.

Lessons on Becoming a Patient Parent

Most of us accept that when we become parents, we will have to be adults and adopt a more patient attitude, withhold from overt emotional storms whenever possible, and lead our children by our own examples.

Man that is hard when I am not having a great day.

Such as (and thanks to Joe Bob Briggs for the numbering system):

Numero uno: Someone let their dog run and poop on our lawn -- two of 'em, so maybe it was two dogs. We have a fence on 3 sides of our lawn. I hate picking up other peoples' messes. They waited until I'd left to take my daughter to school, help out there, and drop off paperwork for James before letting them loose on our lawn.

Numero two-o: At 11:30 AM it's already 96° in the shade & still big gusts of wind and some dumb guy in a big truck in front of me flips his lit cigarette out his window while speeding down the highway. Right near some fields of dry grass. I lost my home and entire neighbourhood to a wildfire about 16 years back and idiotic, selfish acts like this still make me see red.

Numero three-o: The outdoor cat, whom we've unofficially adopted, brought us another present of a dead rat. Normally, this would be pretty good news, except that my 5 y-o daughter saw her in the process of killing the rat, had a zillion questions and wanted to stay for the whole show. And guess who's been getting the thrilling job of double-bagging those bad boys? In the middle of a big heat wave and thanks, but garbage pickup was so yesterday already? Hint: Moms get all the bestest assignments!

Numero four-o: It's now over 100° and the wind is blowing. I saw big smoke clouds from three different fires in less than 2 hours this morning and a spotter plane & Borade bomber just took off over our house. The hairs on the back of my neck are up and I want to just hit something.

I had trouble going ahead with volunteering in classrooms as planned and held my support phone calls until after the kids were down and out for their naps. I only mentioned the heat when James' SHAPE assistant showed up to work with him this afternoon.

I know there are others out there with more things to deal with, but today has just pushed all my buttons. So I try and breathe. I think I need to be the calm adult so I don't scare my kids and make them neurotic. I sneak off to the bathroom and freak out occasionally. I've made my support calls. And I watch the skies and news reports.