Thursday, April 25, 2013

Comment Continued...Dear Mrs. F:

Well, I've been feeling really down today and I now feel grateful that I don't get migraines. So in a weird way, thanks. You know I love you and don't mean this to be cruel. Today saying "hey, I've got all my arms & legs" so there's no reason to feel depressed wasn't cutting it. So I am grateful that my head doesn't hurt. Now I feel like a douche for even feeling so down. I just feel so exhausted and frustrated and annoyed with myself that I can't seem to make a change because this IS my life right now. I think I am depressed because of the bombings in Boston (my hometown) and that I still struggle with M's autism diagnosis & that every single minute of every single day is devoted to autism and anxiety shit. I wish there was a yoga place or even an exercise class only for parents with kids with issues. So i would be surrounded with a public that 'got it'. Maybe then I would force myself to do something. Remember when I used to work out almost every day--totally in love with kickboxing. Life was hard then but I still managed to do some things for myself. Now I don't do anything and I spend any time I could use for exercise chastising myself for not doing anything.

We have a team meeting at the school to review the results of the FBA (Functional Behavior Assessment). I got a copy of it today. Nothing enlightening in it at all. I am so sick of meeting and having nothing actually done. I still haven't gotten an updated IEP from the last meeting to review the most recent neuropsych evaluation in which M was officially diagnosed on the Autism spectrum. They have yet to do any of the things that they talked about doing at that meeting so I look at this meeting as another meeting to talk about more helpful things that they could do, but won't. This school year is almost over--once it hits May nothing gets done administratively. So they will talk about what they could do next September & the circle of special ed continues. It's so frustrating that one of the most effective things they could do would be to bring M over to his old building, expose him to his regular classroom, set up a 'lunch bunch' kind of thing with his old friends. It would make the most impact. Instead he goes to a special therapeutic type classroom in which he is the only student for the whole time with a smattering kids of different grade levels come in and out for periods at a time. This class is about as far away from his regular class and peers (a whole different building) that is possible. So a child who doesn't know what to say to his peers about why he hasn't been in class for so long & feels embarrassed by it all is not being helped with this through social stories or 'errands' over at the building. Nothing. So his avoidance and anxiety grows and grows. A parent can only do so much--I can't be the one to go into the school and do this with him. Believe me, I'd like to. Oh, and one thing that troubles me on the FBA was the possible recommendation of something having to do with "transportation" for M to school. Yeah, that's the way to make a kid feel less different. Make him take the short bus. This is because of the school refusal issue. I have no issue with the use of special transportation if your child needs it. But to suggest it for a kid with anxiety and the beginning of realizing that he is 'different' and no other medical reasons to go on this bus is not useful.

It is all so fucking unfair that when you parent a child with special needs that your parenting is so public. I just want to be like everyone else who just drops their kid off and drives off. And since I eat my feelings and haven't had any physical activity since this all went down last Fall, I am so fat and out of shape and feel like I look like "of course her child is out of control, she can't even take care of herself." I know I don't look that badly, but that is how I feel. I also don't give a shit what I wear as much as all the people at school I deal with--everyone looks so beautifully coiffed and dressed up with pretty jewelry and scarves and skirts. Well, sort of. And I wear some kind of rendition of my uniform of jeans and black shirt. Sometimes a scarf. Because everything is on hold until I get M. back to school regularly and in a better place. I just can't seem to add anything else. I thought about joining the very expensive fitness place that is open 24 hours a day, but the thought of having to interact with other people/moms in town I know is something I can't do right now. Hence I wish there was a fitness place for only moms of not so perfectly wonderful and normal situations/special needs or just having a nutty situation would be good. Life is good, but it can also be hard, annoying, shitty and not at all what you expected.

Over and out. I have to stop writing and start parenting right now.

Yeah, I owe you a phone call. Maybe next week. Love you. Hope you feel better. Sorry your head hurts so much. And your eyes. And sorry Kid's teacher is such an a-hole.


  1. "Now I don't do anything and I spend any time I could use for exercise chastising myself for not doing anything."
    I hear you, I fucking live this. I don't even know what to do or if I fucking care. My goddamn underwear doesn't fit. Seriously. Technically there are holes in the inner thighs of my yoga pants. I still wear them. My hair looks like a fucking brown clown wig (or a hobo). I just look around and think ... how have I spiraled so far down?! How the fuck did I let this happen?! God, it is exhausting to even contemplate, and then I buy a container of mini scones and hate myself and eat 6 before bed. What the fuck?! I mean what the fuck?!!
    We kept the girls home today in protest (silent protest) after Matt had another goddamn unsuccessful discussion with Ruby's teacher. We are so done with this shit, yet there are only 6 weeks left and we don't know what action is best. I would like one day where I don't have to spend mental energy thinking about what I'm going to do about school. Just one normal day like the theoretical "everyone else" that gets to wake up and send their kids to school and not even think about it. I wrote a 99 page email explaining our feelings, disappointments, and frustrations but I'm not even sure whether I want to engage in this anymore. There is no viable resolution. They are not firing her. I have spent the last 9 months feeling like I'm not doing the right thing for Ruby, the whole thing feels borderline abusive, and I feel like shit that I've allowed this to go on so long. We don't live in South Korea... you know?... 6 hours of studying for a fucking test is cruel and unusual punishment.

    I'm so sorry about the stress and trauma related to the bombings. I understand. Things are not the same world for you now. It is hard to process and shake, and might always be there in the back of your experience. That whole shit was crazy and intense. I am still completely baffled with the all clear given BEFORE they found them. Just nuts.

    I am laughing thinking about a fitness club for depressed overwhelmed disheveled moms... that could take off!

    I want to feel like I have control of my life again. I don't know how to get that back. It feels like a different life. I irrationally wish Matt would get a job offer somewhere else and think maybe if I had to start all over again I could get things right. The horrible reality is that moving and solo parenting for months in the process would probably kill me.
    It does feel like I should be able to at least calorie count. But the reality is food is sometimes the only comfort I have. Do I not deserve any relief? Those scones were fucking good on the way down ;)

    I invited a family over for dinner on Saturday. Why did I do that? I feel like we are antisocial shut ins but the stress of trying to pull this off when I just don't have my act together is paralyzing.

  2. I almost picked up the phone to call you and just say "I love you" and hang up. I don't have any time right now to call you though or even comment yet on your comment. But omg thank you so much for making me laugh so hard on some of this. You know, in a "I feel your pain" kind of way.
    My hair looks like a fucking brown clown wig (or a hobo) made me laugh so hard.

    oh great, the phone just rang and it was my dad. His oldest brother just died unexpectedly of a heart attack. His wife had just died last month from cancer WHILE he was in the a rehab center recovering from being hit by a car last November while walking (he was a very athletic guy and used to walk 10 miles a day). While he was in the hospital, his wife (my aunt) whose cancer was in remission came back full force and killed her. He just got home right after his wife died (he was still in the rehab place). And now he died in his bed. My cousin found him. That poor fucking family. I think the heart attack was a broken heart.

    So just when I started to cheer up and laugh today, I get this call.
    By the way, I think I'd rather go to my Uncle's wake this weekend than have a family over for dinner. So good luck with that;).

  3. "By the way, I think I'd rather go to my Uncle's wake this weekend than have a family over for dinner. So good luck with that;)."
    lol... me too... since crying in public would be acceptable in the venue.
    Just trying to figure out what to cook is giving me IBS. Let's not even think about the cleaning that needs to be done. At least they are hippies... so I can lower my usual company standards. I'm also planning to just get wasted as soon as they arrive... which is kind of giving me a light at the end of the tunnel.

    I'm sorry to hear about that though, it sounds tragic and heartbreaking... for both of them. I can't imagine being stuck in a rehab knowing my wife was dying, or his wife having to go through without her husband. Devastating, no wonder he had a heart attack. I'm sorry.

    1. Yeah, I think the crying will be good for me. I have been wanting the release of a good cry for days now, but haven't been able to. I have just been feeling sort of a pit in my stomach. I started balling during a TV show last night when one of the characters cried! Plus those Subaru commercials have been getting me misty, too. I NEED to cry. I love my Uncle Howard and I am sad for my Dad, but I didn't really know him well. My Dad was one of 13 kids (Irish Catholics!) But I also don't really want to have to talk to the million of relatives. My head is so full with all my shit right now. And the place where the wake is 1 1/2 hours from my house so it is basically my whole day. I know that sounds so rude of me to say this but I finally get out of the house for the day and it is for a funeral. And since I will be gone all day practically on Sunday, I will have to spend Saturday preparing for Monday & school stuff (lots of preparing mentally too when your kid doesn't go to school regularly and you have to interact with the so many different people at the school every day.) So Friday will basically be a major exhausting DRAIN with the big meeting. And then Sunday will be another emotional day. And I better get upstairs before M comes running downstairs. Maybe he's asleep?? He's quiet. Either that or he's working on a project holy crap I have to run!!

  4. Julie! I wish I could write all the things I would tell you if I could. I wish we could go get coffee. I have been there. Literally. been. there. Kent was diagnosed almost four years ago and I am just now getting to the point of taking care of myself. Really try to do something for yourself. It makes a huge difference. Biggest differences for me? Yoga. and Prozac. Not necessarily in that order. But they have made a HUGE difference. Truly.

    The PDD-NOS road is sucky and long. But you are doing it. It will work out. Just keep on keeping on. (and get some Prozac.)

    1. Robin!!!! Hi honey! Don't you wish we all lived closer! I've got the Prozac covered since I take Zoloft. I know yoga would be perfect. I have done it for more than 20 years and LOVE it. But I am not doing it at all now. I want to force myself to start back up. I usually like to take morning classes, but since that is so up in the air for me, I think I am going to try to at least start with committing to one evening class. It would be great if I would do it at home, too, but I know I won't right now.

      There so much more going on with Murphy right now. Middle school starts in 5th grade in our town--stupidly--and it has been a real struggle. He wasn't going to school for various reasons--so much stress related to that. His aspergers & spectrumy stuff has evolved and is becoming more pronounced in the way with anxiety and also social stuff. I never blog because it always seems so not positive happy stuff & it is so ever changing and also because I am so afraid that someone who knows us in town will find my blog and read what is basically my diary. And of course, I am so exhausted and drained at times who wants to rehash the challenges! BUT there are little positives and I should share those, too. Like when M. does things like dries himself after a shower! Mrs F and I have been talking on the phone, too. I definitely need to more to be in touch with you and the 'gang' because you all have been such a good support system for me.

      Unfortunately I have to run upstairs & hang out with M while he goes to bed. I go to bed so early now. I usually just go to sleep when M. does. I guess that's good because then I would be online way, way too late and I need as much energy as I can get to face the morning with getting m. to school. He has gone every day this week so far. He doesn't go to his regular classes anymore though. We're working on it. I love seeing Kent involved with things like Cub Scouts. Does he ever resist doing stuff outside the home? Does he have any anxiety issues? The anxiety portion is what is killing us. And we didn't even know that was what was going on since kids show it different ways. Murphy didn't know that he experiences was anxiety. He just knew he felt like throwing up and had tummy trouble when he would have to go to school, or go anywhere or ride in a car.

      Argh...I could go on, but I need to get upstairs. Well, lady, I think you and I will be talking more. Perhaps on the phone someday!

    2. " Like when M. does things like dries himself after a shower! "
      LOL!!!! When I am in the middle of animal husbandry (as I call showering Kid) I always ask... "when will you be old enough to shower yourself?!" And she says... "When I'm 35."... "Okay, great, that won't be awkward!"

  5. Julie - Kent doesn't have any anxiety about doing things outside of the house. He used to have anxiety about new things, but he's has either outgrown it or learned to deal with it. Our issues with him have more to do with socially appropriate behavior. How to express disappointment, how to disagree with someone without getting into a fight, etc. And also his attention and focus are a big issue. Who knows what the issues will be next year. It's ever evolving. I just try to live in the now. :D

  6. Hey Julie, I just wanted to let you know I stopped by and am thinking of you. Wish I had some answers for you... Sometimes at our house I think things are improving, but then I wonder if I am just so acclimated to the moods and social stuff that is our "normal" that I doesn't seem as odd. And then I see my older son or my husband react to it, and realize, yep, it's still really weird around here. Of course I'm on Celexa and they're not... We had our PPT meeting to see how Kev's plan would transfer up to the high school next year. His PDD-NOS keeps him so awkward, plus a new, bigger school, more challenging academics, more required independence, the anxiety and ADD/attention stuff... Ugh. I know you must be so strong to be keeping up with M and all his stuff as well as you do. Definitely not an easy road. I am so thankful that Kev has his artistic outlets. Finding that has made a difference for him in a lot of ways. But, you know, it still is what it is... Well, just wishing all you ladies a peaceful weekend. xo

  7. oh my gosh you guys.
    Julie, I want to say something that will help or at least let you know that I love you. I LOVE YOU! But I'm laughing to hard at the rest of the comments. Srsly Mrs F with the brown clown wig. ah. and the underwear. I'm sorry I'm laughing so hard. My dumb hip has made me gain a trillion pounds so I'm laughing cause I know. Let's start a new blog: "Fat! Where Life Takes you When Everything Falls Apart!"

    So glad you posted this. I'm sorry it's so hard right now. ...And has been for such a long time. If only we could all get together. Who knows what things will be like in a few months or years... Regardless of M, I so wish you were able to give yourself the love and care you deserve and need right now. heck, I wish the same thing for myself and I'm not dealing with debilitating anxiety / autism / issues. (and you, too, Mrs F!)

    Love from across the country. XOXO