Join Date: Feb 2005
Location: somewhere on the yellow brick road
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Rhu - mother,grandmother,daughter,sister,friend-foster,adoptive,and biological;not necessarily in that order. Some of it's magic, some of it's tragic, but I had a good life all the way (Jimmy Buffet)
I am alone with both children for ten hours a day and I am FRIED. I love him fiercely, but some days I just do not want to be around him, and that just makes me feel guilty. I go back and forth between being angry and depressed about the state of my life right now.
Is there a SPD tribe here at MDC?
Anyway, I could go on and on. Any advice for coping? I am really falling apart here and feel like I am constantly under attack by my DS. I find myself tensing up throughout the day, bracing for the next tantrum/meltdown. My DD gets the short end of the stick because I'm constantly attending to DS's needs. And of course, at the end of the day, there is very little time or energy left for me or for me to give my husband.
Wow thank you all so much! I'm so glad I finally came out of the closet so to speak!
There is so much good information here I can't tell everyone how much I appreciate it! I do have a copy of The Explosive Child, and I read it last year before our diagnosis. Looks like I need to pull it out and read it again. When I saw that the subtitle of that book uses the words "easily frustrated and chronically inflexible" I knew it was for me!
OT has definitely made a difference, almost overnight. It was amazing! But we seemed to have hit a plateau. And I will admit that I am sometimes not good about staying on top of the sensory diet. Especially when he seems so resistant to it! I thought he was supposed to be craving sensory input, but when I say, "let's play the brushing game," or "show me how high you can jump on the trampoline!" he says "NO!" It's almost like he's doing it just to be defiant. It doesn't make any sense.
Unfortunately we do not have the resources to hire someone for help. I could go and and on about it (that's a whole other post!) but we are $20,000 in debt for medical bills last year. Emergency c-section for me, hip dysplasia for DD, thyroid cancer for DH, and a hospital stay for an eye injury for DS. We know how to have fun! The debt is really putting a strain on our finances. We don't even have the money for OT. We are so lucky that our OT lets us pay just what we can for DS's weekly treatment. We pay only a fraction of it monthly, but we feel it is SO important that we can't go without it.
Lynn, thanks for the responses. Those are really good and nice and short. I feel like I tend to go into too much detail with my explanations.
Crazymom, yes, I certainly have grieved. I know what you mean. Nothing is like we planned it to be. And I am SO TIRED of getting the "been there, done that" from my MIL. She literally says that to us because DS is exactly like DH was as a child. (Which is giving me alot of new insight into my DH, by the way.) Other people have not been very supportive, either. My mother is 5 miles down the road and I talk to her maybe once a month. We see her for a visit about that often, too.
Miss Information, THANK YOU for sharing and thanks for all the great information. Oh my gosh, YES! Haircuts!! Trips to the dentist!! All of these involve screaming and cajoling. Your post of how your DD opened up in a new school gives me hope. DS is terrified of school because of his experience last year. He says, "I don't like school. That's where they call me a bad boy." The other kids called him that from what I can tell. When he gets overstimulated he hits and pinches. He would often climb on top of other kids or crash into them in an effort to get sensory input. I'm really hoping that we can find somewhere that he will "fit." Our OT said that there is a preschool within our public school that provides sensory diet and has OT's on staff. That is a dream for us, and I hope it happens!! And yes, when he is self-regulating, after lots of sensory input, my son can get over upsets relatively quickly. I'm amazed by it. Last week immediately after OT, DS asked to go to the nearby goodwill, but I told him we couldn't because DD was very tired and grouchy and he just said "okay" as opposed to screaming and crying about it for 15 minutes. I was amazed.
Thanks again to all of you for the help and support. I'll keep you all posted.
So many of the techniques for gentle discipline that I learned and try to use just make him even more mad. I can't never ever tell him something like, "I can see that you're very mad. It's ok to be mad." He will just get more angry. So I feel kind of like I'm flailing about without any ideas. We are working more on prevention, with the sensory diet and all, but I know people must look at me cross-eyed when he melts down in public and it looks like I'm not doing anything.