Does this get any easier?
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| Wed, 09-28-2005 - 5:01pm |
You would not believe how long I just agonized over what "emoticon" to choose for this post. I don't know what I feel, but I think "angry" might be the closest. I'm just upset and I know I shouldn't be, which makes me even more upset! Why is this so hard? I mean, really! Intellectually I know that Calvin will be fine. I know he loves me and is smart and is going to overcome this. I know I am being a good mom. I know we are doing everything right. It's the emotionally "knowing" this that I'm struggling with. I am soooooo worried about everything and I'm snapping at people and have ZERO patience with my family. And I'm about to throw this whole GFCF diet out the window. I'm not convinced it's helping and I'm having a REALLY hard time conveying to my family (mom, husband, MIL) how strict it is. No, Calvin can't eat that! It has flour! Flour comes from wheat! Did you all read the book I gave you? No? AUGH! I mean, they are trying to follow this diet with me, but my mom isn't very detail oriented and "forgets" to read ALL the ingredients. I caught two things this week (one had wheat starch and the other had flour. Flour!) and she said "well, geez -- does it have to be that strict?" Uh, yeah, it does. Again, did she read the book I gave her? God knows how many slip-ups there have been when I'm not there. Which makes me wonder why I should even bother.
And then I'm resentful. Why my child? Would any of this be easier if he were NT? I can't figure out if I'm just not happy with being a mom sometimes or if this just my subconscious reaction to a child who may not be as emotionally attached to me as I am to him. And I hate talking to moms with NT children. I hate hearing about their kid's milestones. I sit there with a lump in my throat and smile. Then go home and cry.
Sorry -- I'm just having a bad day. I hope your days are better.
Kellie

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(((HUGS)))
I've never tried the diet because I know how hard it is. Like Valerie I was going to suggest you look into enzymes.
Its ok to be having a bad day. I am too. We have an IEP tomorrow. I feel like crying right now.
Hang in there++++++
Samantha
(((HUGS))) hang in there!
we didn't do the diet, I read about it and immediately threw that possiblity out the window! I am way too unable do the detail and I would have absolute mutiny on my hands from everyone else in the family. Actually, we mostly just try to have a very healthy diet and forget the rest.
It does get easier, but we still have awful days! Yesterday was one of those, I was ready to just leave, just to go out in the world w/ more sane people-- but DH wasn't home until well after they were all finally in bed and by then it was too late and I'd already started to chill out w/ my glass of wine. Of course Dh had had an awful day too so I couldn't even unload on him. Being the mom & good wife sucks sometimes!
passing some cyber wine and chocolates and lots of chill out time and whatever else you need to rejuvinate.
Betsy
Hi Kellie,
Empathy coming at you.... it IS hard. Ugh.
I have a friend with two lovely NT kids. Her DD has a food allergy and she is so meticulous about reading labels and talks about how hard that is. I'm thinking "Try having to read labels *and* have an ASD kid!"
Hang in there.
Cathy
Hi Kellie,
I've had one of those days too. My son is also young, so I don't know if it gets easier. My thinking at the moment is that it just gets different, which is not too reassuring for any of us. But I wanted to respond to your feelings about talking to moms of NT children, because I often feel that way. I find myself gravitating towards moms of ASD kids more and more. I just feel more comfortable that way. And I guess it just isn't ASD moms, I am also comfortable with anyone whose child has any type of challenge. At the center where Eric gets therapy there are lots of kids with Downs and I have become friends with those moms too.
To give you and example, for awhile, Eric had dropped all his stims. Lately he started them again only at home. But today his teachers at school say he is stimming there now too, although he still seems "present" and getting what is happening. At our OT's suggestion, I started a log of all Eric's after school stims. They are doing the same at school. For my part, it was so depressing. Nearly every 15 mins. he was doing something different of a stim nature. Sometimes I could redirect him (instead of jumping on the couch, jump on the trampoline). But sometimes I could not. I am depressed that he seems to need so much right now, that he feels so insecure and can't tell me why. I have been able to get past what he does, since it does not hurt him, but I just want so much more for him, you know? But there is so much I do not understand about his world, try as I might....
Anyway, you are not alone. Also, the diet is hard. It has been helpful to us, but it took awhile and the worst part of it is dealing with other people and social situations like birthday parties. But I will be the first person to say it is not for everyone and if it is becoming all you think about and you are not seeing results, and you are sure you have given it a good shot, either go for enzymes, or ditch it. Even for us, I do not view it as our first line of treatment. For us that is ST and OT and possibly floortime.
But it seems like anything I do that involves instructing other parents of NT children about Eric is hard. Not just the diet, but anything. It is so tiring. Sometimes people use the analogy of being in a foreign country to describe what it is like to be HFA or AS. I sometimes I feel like that around NT parents.
Anyway, I am rambling. I just wanted you to know that I sympathize.
Katherine
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((((((((((((Kellie))))))))))))),
In a word: Yes. It gets easier.
Keeping a child to any kind of strict diet is stressful, and to do it on top of all the learning and adjustment you are going through makes it doubly tough. Dealing with adults who soudl know beter, but can't follow diections must be infuriating! YOu must feel very frustrated havign to supervise EVERYONE, and feeling like the only responsible party, and the only one who is taking this stuff seriously.
I think you shoudl sit down with your mom and have a nice frank talk about some of the pressure you feel under. Hopefully she will step up to the plate when se realises how much she is adding to your stress
Plus, If I remember corectly, isn't Calvin is at THAT age when *our* kids are at their most difficult? I know we have had this discussion on the board many times, but the years between 18 months and 4.5 can be very, very difficult. -DOn't be terrified when I say that, I have generalised the timeframe. For an individual child, the tough time doesn't generally last 3 years!
Sending hugs and chocolate.
-Paula
visit my blog at www.onesickmother.com
Well, this "emoticon" was easy -- thank you everyone for your responses. I guess I'm still struggling with the label, the diagnosis, and the "why us" syndrome. This has been a really bad week/month/year and I'm really ready to say goodbye to 2005 quite frankly. I'm still adjusting to all the therapists (all of whom I really like, but you know -- they're still relative strangers) in and out of our house, the preschool process, the looks of pity I'm getting from moms with NT kids (HATE that) -- or worse, the looks of "aren't you overreacting?" (HATE that, too). Plus, I don't want to be a SAHM. Never did -- not even when I was pregnant. I need adult interaction -- always have. But work is so out of the question with our current situation. All I can do is do some occasional freelance work, which is basically me and my computer. No other adults. I'm really not very happy these days.
But you all are a big help. Really, really. Thank you so much.
Kellie
Dear Kellie,
Yes, VERY important, adult interaction. I never stopped working (and looking back on it all, I am amazed, cuz I was running 2 freelance businesses until last year, now only one business) but my husband, another freelancer, has always been an equal partner in running our son (age 8, PDD-NOS) to therapies, cleaning house and buying groceries, laundry, etc. So I have always had adult interaction, although, often in my work these days there is no real time for any supportive connection except me to them (I am a personal trainer and exercise instructor).
Anyways, I found early on that it has been mucho more helpful to only hang with parents of NT kids very occasionally, and then only with my dearest and closest friends with NT kids. My real gang has become the parents of children who are the same as Malcolm, and that is a major source of my strength. Many of them also have NT children (I only have the 1 child), and so Malcolm has become friends with both NT and ASD children, and our companionship is not so segregated and isolated. We do many activities as a group, providing lots of opportunity for guided social growth and connection for all our kids, NT and otherwise. Indeed the group I hang with is much more inclusive than most parents of NT kids ever are, many of which are so blissfully unaware how bigoted they are -- harsh word, but still true. Those bad feelings you are descibing come from a real place and ignorance should now long be an excuse, IMHO...
I really count on these frieneds, men and women, for much of my support and even social life now. We exchange kids, even for overnights, they have become extended family. In fact, Malcolm refers to several of these pals as his "brothers".
I swear to you, happiness will come with your child's growth and achievement. There is nothing more prescious and joyful as the accomplishments of a child with so much more he is up against. Our children are heroes, big time!!! This is a rough road, and you are just beginning. Take it easy on yourself, as easy as you can. Change is tough, sucks, even. If I were you, I might look for some support groups, another mother whose child is your son's age with similar situation so you can have some company, and so can Calvin.
Some parents of ASD kids seem to be afraid of having their kids hang out with other kids like them, fearing perhaps that they won't learn and might pick up "Bad" habits or inappropraite socialization from other ASD kids. This has indeed NOT been my experience, in fact, the opposite seems to be true. Our kids have connected with each other and then together have learned to connect with NT kids.
BTW, Malcolm is now bigtime into "Calvin & Hobbes", remember I told you he was almost a Calvin as my dh and I LOVE that cartoon. I can hear Malcolm chuckling out loud when he reads those books, sometimes he brings them in to read to me so we can chuckle together.
Hang in there. Every once in awhile I go for a massage, that helps me unwind.
yours,
Sara
ilovemalcolm
Hi Kellie, I'm new here, so I know you have no idea who I am, but I just wanted to say that I can absolutely relate to what you're saying... Yesterday was a horrible day, and after dinner, while DH was playing with the kids in the living room, I just stood in the kitchen and cried until my eyes were puffy, because I had just reached a point where I felt like I couldn't do it any longer. DD had one of those days where she was just freaking out about everything -- literally, if I didn't say something exactly the way she expected me to say it (for example, saying, "The bus is here" instead of "Here comes the bus") she'd completely blow a gasket. At one point I was just sitting on the floor with her, my arms wrapped around her torso and my legs crossed over her legs, pinning her arms and legs, just so she wouldn't hurt herself, her little brother, or me as she was flailing and kicking all over. And she HATES to be confined that way, so it was only making her more upset, and I was just sitting there thinking, "What the heck do I DO!?"
On most days I feel very proud of myself for the way I'm handling everything; I feel like I'm a really good mom, and everyone tells me that I'm the most patient person they know. But then there are the days when I feel like I'm a HORRIBLE mom, and I'm snapping not only at DD but also DH, and I start to lose hope. DH told me that those bad days are "payment" for all the days I manage to keep it together -- that my feelings have to boil over at some point, and I guess it's a good thing they don't boil over all that often. But reading your post, I could just so completely relate to everything you were saying (except about the diet -- don't think we could do that, so kudos to you for even trying!) I honestly think that we wouldn't be human if we didn't have those feelings, you know?
So anyway, HANG IN THERE!!!
Jennifer :)
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