Tuesday, June 4, 2013

The day had started so promising.

Oy fucking vey. My child argued with his teacher (sped teacher...remember he refuses to go to school so he has his own deal going on) about how he shouldn't have to wear shoes throughout the school. He gets to just wear his socks in his classroom. He said, "But I'm a toe walker!" and "you just threw that on me!" Oh and he let her know that he doesn't like the way she treats him. Which makes me actually chuckle. Because it is so ridiculous. For the record, this woman is completely awesome and totally gets him and understands kids on the spectrum and that he is trying to gain some control in his world.

I was surprised that he had such a bad day because he had walked into the school by himself for the second time--yesterday being the first time--since I don't remember when...last fall maybe. I was actually in the office picking him up, gloating happily, telling the people in the office (who all know us so well by now) and the guidance counselor and the Sped liasion who all happened to come by. And then his teacher came to the door. Without M. And said that we needed to talk.

My boy should have been getting autism support since kindergarten. ABA therapy, the works. But he is so 'intriguing' and intelligent and witty and funny and interesting that his autism got overlooked. So now here he is in 5th grade, middle school in our town, starting from scratch with the supports. I cried. And when the Sped liasion asked what was wrong when she then saw me sad, M's teacher said I felt guilty. Guilty because of all the stuff that should have happened for M. years ago. No, I don't feel guilty. I feel angry. Angry because I searched and searched and no one helped me. So we kept trying to support and raise M. thinking we must be doing something all wrong. But in actuality, we were raising a child on the autism spectrum for 11 1/2 years and didn't even know it. I say we are fucking heros. I don't feel guilty.  I'm mad. But I have to keep moving on and doing what he needs now. I can't help but look back even though everyone tells me I shouldn't.

So tomorrow his teacher is going to work with M on his 'stresses' and will use starburst as an incentive. And it will work because my child is on the autism spectrum and he loves starburst. Or it may not work at all and he will tell her that he is 'done with her'--he told her he was 'done with the TLC' (the classroom/program that he is in.)

It's all kind of funny. Because it's true.

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.

Tuesday, October 30, 2012

Friday, August 3, 2012

Because I can't just post "Big day at Children's Hospital" on FB since I 'friended' my dogs' breeder

It's going to be a tough one today.

On many levels, but mainly because at 4:00 today Tom & I will be at Children's Hospital/Boston, meeting with the specialists at the Developmental Medicine Center to discuss their findings/results/opinions (I say 'opinions' because unfortunately there is no blood test or x-ray that tells you what is going on for sure for kids like M.)

My parents are coming later today to stay with the kids, which is another thing altogether. Family tries to understand, but this is one of those things that you really don't know...until you know. When I spoke to my mom other day about coming, she asked if we were going get pizza and ice cream & have a little party & watch a DVD of Jack's camp music performance & how they are going to give my kids some money so they can do something for Tom & my anniversary which happens to be Sunday (18 years) and on & on. And of course, I would be the one to provide all the set up/retrieval of food because that is just my role in the relationship. I was a little stunned, but not overly surprised. It goes with the territory of people not really getting it. Another example would be when a couple of days ago, my Dad asked whether we would all be going up to Stowe soon & talked about the fun things he & my mom did when they visited us there. He didn't mean to make me feel a little sad inside, but hello, M won't leave the house so 'what the eff are you talking about?' I told my mom "well, I am not sure how going to feel when we get home after the appointment in which M will be officially (more so than the arbitrary "not sure what's up" diagnosis of PDD-NOS that doctors give kids until they either strike out the autism diagnosis or specify what type it is in particular--classic Autism or Aspergers) diagnosed with Autism." I told her when we first talked about getting together some night this summer to do what she described, it was prior to getting these appointments & the spiral downward that we have been experiencing and um, can we just separate those two events. When I was trying to explain, she clearly wanted to get off the phone, she was tired, etc. And this is a woman who DOES try to get it & reads up on it. But they don't get it. Like when she says to me "Does he always have to have his way?" when I am referring to a meltdown regarding getting take-out, but that little piece was actually such a small footnote in the actual shitty-ness of the story of my day & actually was a 'proud' moment for me and M because he did eventually calm down & did not get what he wanted. So her comment was a dagger of being misunderstood for me. A feeling of exhaustion, a feeling of I really have no one other than Tom to talk about this stuff. It is so isolating.

Unfortunately I do not have time to write more. I have not really said much of anything of what has been going on here for the last year since my last post. It is so pervasive to our existence that it is kind of like a whole lot of nothing and a whole lot of stuff goes on. As I try to explain to my mom when she asks whether today is good day, well, it depends on the moment. It is moment to moment.

And add 2 dogs to the mix--the 1 1/2 year old one & the itty bitty puppy. I love them & don't regret having them, but it does add a little bit more crazy to the house. But believe it or not, it has added so much good as well.

Oh while I am complaining, I have a bad headache, changed my Pill prescription & for some reason have not gotten my period so I just feel like on the verge of getting it--you know that good feeling of bloaty-ness and all, the weather is disgustingly humid, I have a massive "courtney love" style bruise on my freaking lower leg, Tom can't scoot out of work early so I have to meet him at his work & then drive into the appointment (meaning I have to deal with this house, dogs, parents, etc on my own & the mad rush to get myself ready, prep paperwork, make sure everyone here is all set).

Well, I have got to get moving.

Monday, July 30, 2012

Not supposed to be like this.

I can't fucking take it.

Saturday, July 16, 2011

Oh Blessed are the Children

Well, this totally cracked me up.

We were driving home last night from Jack's concert from his music camp workshop. Murph was laying down in the back of the car (we have a minivan and he was in the way, way back...yes, I know he should be buckled in...part of where this coming conversation came out of). Jack was hammering him on how Murph was 'breaking the law' by not having a seatbelt on. It is a state law in MA. He told him he would be arrested. I said, "no, actually, I would be arrested as it is my responsibility to make sure he has his seatbelt on." Not that I think I would be arrested actually, I think I would get a ticket. We like to use scare tactics in our house though;).

So Murphy was just being silly and said to Jack that if the cop tried to arrest him, he would say something like 'I am sexually abused." First of all, what? Huh? wtf? Where on earth did he hear this term? PLUS, I am all like DON'T you ever say that to anyone...unless of course, you have been (which was just weird to be talking about as we were trying to drive home from a pleasant evening out, proud as hell of Jack...and a conversation that was not planned, etc).

Then I asked him if he knew what it meant to be sexually abused. I know that we as parents and the school do their thing about inappropriate 'touch' of private parts, but no one to my knowledge uses the term "sexual abuse" to young kids.

He starts laughing and says 'You know, like if someone was punching your balls!'

Tom nearly went off the road laughing. Of course that is what Murphy would think it means. Abusing one's 'sexual parts'. Abusing to him means hitting or beating up, etc.

It was such a weirdly cute 'kid' interpretation of something so awful.

Yeah, this is how crazy our life is.

OMG, UPDATE as of this very moment!!: Murphy just came in the kitchen to get a Mott's Ice bar--btw the absolute best thing ever and he eats TONS of them every day, but unfortunately they are hard to come by--and was singing "Can I touch your big, fat ass? Can I touch your big, fat ass?" (For the record, Jack would NEVER in a million years talk like that. It is not like this is how I am raising my kids. This is uniquely the Murph.) He then turns to me and says "What am I saying?" He wants me to repeat what he said. I bite because I am curious that way;). He then says, "Sure, you have my permission to touch my big, fat ass" and he bumps me with it. Oh help me;).

PS Tom just read this and told me I was over sharing. You can tell he does not actually read my blog if he thinks this is over sharing;).

Facebook has been my blog lately

I have been doing more on Facebook since I have not had as much time to blog. Hence, my updates have been kind of dark for the venue....not the usual "at the beach and it is fun" kind of status's! Sometimes you just have to get out what is going on in your life somewhere "safe"...that is why I limit my 'friends' on it to only a few people and not everyone I know. Can you imagine how weird it would be to get some of my updates if you were someone I only knew a little bit in high school? All of my updates on Murphy and his 'stuff'.

Anyway, I do hope to update here at some point soon!