I will be back with more posts in the coming weeks as the next 2 weeks are big ones around here. We have the 5 hour neuropsych eval on Thursday and the following week, a second appointment with the neurologist. We could get a more definitive diagnosis or lack thereof in the next 2 weeks. Murphy has not had any of the OT, PT or speech/language evals yet, but really the only one that concerns me is the neuropsych...the other ones are not big deals. He is getting referred for those for his bad handwriting, toe walking and his British sounding speech. Those issues are not the things that turn this house upside down. We got him a net book for typing, he will have well developed calves and really, who doesn't love a respectable British accent?
In the meantime, I have got to put a stop to NOT taking care of myself better. I quit the gym, cancelled Weight Watchers, stopped tracking food and have gotten back to wearing a version of my "uniform" daily (jeans, some kind of black shirt and Sanita/Dansko clogs) without any kind of accessories because I just don't have the mental capacity to care. Yet, I do care down deep inside. I have been doing some work around the house that has been really satisfying. Like pulling up rugs in 2 upstairs rooms and painting floors...yes, sounds weird, but this house is over a hundred years old and it is historically accurate for the wide pine floors of this style house...Actually, the real reason is that it only costs a can of paint and I am impatient and do not want to wait to have someone put down new floors. Not that we could afford it. We can not have them sanded and refinished because the floors are so old that the prior paint on them are full of lead. Plus I kind of have an addiction to gorgeous rugs. Downstairs we have unpainted wide pine floor with Tibetan rugs I had bought at Yayla Tribal Rugs in Cambridge, MA prior to having kids.
Yeah, so anyway, spring weather is coming here and I know I am going to be disgusted with myself as I pull out warm weather clothing (which more than likely will be a Spring version of my "uniform"...some kind of black short sleeve shirt and jean capris) and face that I have let another year go by without losing the 45 pounds I gained about 6 years ago. I know that the best thing I could do for my family is to tackle this issue so I can feel better about myself. Yet, I work on it for a little while until I don't at all. Maybe I am enjoying this house "work" so much is because it has a beginning and an end...with a result that you can see and enjoy rather quickly. And then 'issue' is over. Don't like that rug? Pull it up. All done. The rug is not going to creep back onto the floor. I guess having body/food issues is better than having a drug/drinking/gambling problem as it does not affect all the people in your life as much. I just feel like I don't have the room in my head to deal with Murphy (and Jack since he is affected by being the sibling of a brother with challenges) and deal with 'fixing' myself. I go to a therapist once a month that only deals with parenting Murphy. I feel like there is no me and that no one in my parenting circles where I live can really understand how our life is like with Murphy. There is no carefree "hey, let's go out and do something" around here. Tom and I don't even spend any time together when the kids are in bed BECAUSE I am in bed with Murphy. I am certainly getting more sleep and reading more. Okay, I have to stop since this is totally making feel sad. My life is fantastic compared to what it could be. I don't even need to give examples. Not in Japan...enough said. I know no one's life turns out exactly how they had hoped. I just wish I could eat at the dinner table with my family. We used to be able to when the kids were really little...before the sensory issues took over for Murphy. But that was when they were so young and dinnertime was so crazy anyway. I had been waiting for the time when we would sit at the table with a nice wooden salad bowl and the same meal being eaten by all and we could actually talk to each other about our day or whatever. I don't mean perfect...it would have the normal family stuff going on. That is all I want. Just to be a little more normal.
Well, I have to go. Murphy wants to go upstairs to get something and needs me to go with him. He is 9 1/2 and he can't/won't go upstairs alone. And believe me, it is not a matter of us just making him. Believe me.
Alright, over and out.
Oh Julie, I know. I have recently been really of the mind set that I'm just going to eat whatever I want, with almost a blind eye to the repercussions. I never care in the moment, but then I kick myself after. And I think it is just for the personal satisfaction of doing what I want, when I want, and not denying myself. Maybe it's like painting floors... Also, I hear you on having to chaperone trips upstairs or downstairs. I totally get that. And the going to bed with them. I think all my in-laws think I'm crazy and we should just whip our guy into shape, but you know it's not like that at all... If only it were that easy... Don't feel bad about saying it's hard. The stuff you are dealing with takes a huge toll on everyone involved. Your neuropsych eval should give you more tools/information to help the situation. We had been told to bypass handwriting with keyboarding too, but then found out that our guy (among other things) has sequencing issues and will never be able to keyboard the typical way (or be able to read an analog clock, or figure out the date from a normal grid-style wall calendar). It's all stuff he's managed to work around, but knowing what we know now, we won't waste any more time "teaching" our 12 1/2 year old to do these things. Anyway, just wanted to say Murphy is lucky to have a mom who is willing to understand, support, and work with him. And you're all moving in the right direction now, which is so much better than wondering if you are. Hope you are feeling better/happier soon.
ReplyDeleteOh Gigs, thank you so much. It made me feel so good to hear someone else can understand the whole "chaperoning" upstairs & the bed thing. I do feel like we are moving in the right direction now. I worry about Jack, though, so much...his older brother. He just can't stand the whole thing. That is wild to find out that your son has sequencing issues and the difficulty he will/does have with thing like reading an analog clock...things that we neurotypical people just take for granted. Having a kid with these kind of 'issues' really throws the normal everyday off, huh! I totally get and understand the sequencing thing, but I can imagine to most people, they'd be like "Huh? What do you mean he can't read the clock?" Just one more blip to the day!
ReplyDeleteI have been meaning to post more and be in more 'contact' with you as I know you have a similar situation. You take care of yourself and your little guy, too!
Yay!! A post. Before I get to the Murphy thing.... I totally get the fat thing. I'm in the same boat. I just don't have the energy. For me, it's not even food issues (I don't think.) It's more being lazy and just not having the energy to care enough about that. This. "Don't like that rug? Pull it up. All done. The rug is not going to creep back onto the floor." Literally. Made my LOL. Hahahaaa! So true!!
ReplyDeleteRe: Murphy. I'm so anxious to find out what the neuropsych eval says. And I totally get it. I really have to fight feeling sorry for myself that we aren't "normal." I want so badly for Kent to do t-ball and soccer, etc, etc. He just can't do it. Physically, he's actually really good at sports (he plays with Fred in the backyard,) but emotionally, he just can't get past having to play by the rules and sometimes not winning. He. has. to. win. Period. And of course other parents say, "put him in, he's going to have to learn sometime that you don't always win." I wish it was that easy.
Oh well. Like you say. It could be worse. Truly. It's more a matter of me adjusting my expectations and realizing that life with my children is not going to be the way I thought it would. Doesn't necessarily mean it's bad....just different.
I'm glad you're posting again. I think about you a lot and it's so nice to read that other parents aren't "normal." ;)
emotionally, he just can't get past having to play by the rules and sometimes not winning. He. has. to. win. Period.
ReplyDeleteYes, Robin! We had that too. I can remember all the neighborhood kids playing "pickle" in the yard when they were younger, and my son going absolutely nuts when he got out. Of course nobody understood this type of reaction...figured he hadn't been taught to be a gracious loser. (Believe me, we tried!) Although I have to say it has gotten much, much better (as in he can control his reactions) as he's gotten older...so maybe that is in your future too...
oh yay!!! Thanks Gigs. We're really hoping he'll grow out of it, at least a bit. There have been many challenging behaviors that he has outgrown, or at least learned to deal with better, we're hoping that's one of them.
ReplyDeleteOne of the hardest things about parenting Kent is getting over MY feeling that people think I'm a bad mom. Honestly, if I could get over worrying about what other people think, it would be so much easier.
ReplyDelete"I had been waiting for the time when we would sit at the table with a nice wooden salad bowl and the same meal being eaten by all and we could actually talk to each other about our day or whatever. I don't mean perfect...it would have the normal family stuff going on."
ReplyDeleteJulie. This is my fantasy. TOTALLY get it. I just think maybe when they're teenagers (or at least just Luke) we'll finally get there...not because Luke's any better...just because I'll have gotten to the point where I don't care if they're eating fried twinkies dipped in bacon grease covered in frosting. with Lucky charms on the side. We're ALL SITTING AT THE TABLE TOGETHER HAVING NORMAL CONVERSTAION. no tears, no throwing up, no battles, no starving, no nothing. Just chilling with the fam. eating twinkies while Aaron and I have lasagna.
And of course. Doing stuff around the house instead of focusing on getting in shape and then hating it once warmer weather comes? uh, we're twins.
I totally relate: I was looking at a post today about putting string lights in our bedroom and got all whipped up into YES THIS IS THE ANSWER. It'll make everything better. Then I realized what I want more than that is an unbroken husband who gets me and is on the same page with me. Yikes.
ReplyDeleteFor me the eating right = comes and goes. There's some weeks where it's effortless. Othertimes I literally have to drag myself kicking and screaming to the gym and talk myself out of chocolate ALL THE LIVELONG DAY. God.
I read in a book recently about diet something about how we all know what we could do better. Simple things like no chocolate after dinner (dammit!). So start with those things. I'm finding myself very resistant of "diet plans" these days but prefer just to do what I know is best.
HUGS -- I think the world of you.