Just when I think I can’t take it anymore

November 13, 2008 at 9:27 pm 14 comments

     I often marvel at the timing of things in my life as C’s parent. People compliment me on the positive spin I put on autism, and I am often reluctant to express great sadness or frustration. Yet lately, sadness and frustration have been our norm. It’s as though we’re living a lie. To all looking in from the outside, everything probably looks great, but at home we’re falling apart. So near tears am I at so many points of the day I find myself grateful for a respite in both my own work and C’s school.

     C’s behavior the last couple of months has been horrendous. He’s Jekyll and Hyde from home to anywhere but home. Fits, tantrums, defiance, and completely uncontrollable behavior have taken me to the end of my rope and convinced me that I am quite possibly the worst parent ever to roam the Earth. I’ve always said I could understand how the divorce rate for parents with children with autism is so much higher than the national average, but I never really got it until now. It’s not that we differ in our opinions on what to do for/with/about C, but rather, by the time we’re done dealing with him, we have no energy left to give to our relationship. I’m thankful, through these difficult periods, that we are so fully committed to our marriage and to C. It probably allows for a certain amount of taking each other for granted, but I don’t think either one of us is up for tending to each other’s needs at the moment.

     Yet just when I don’t think there is any light to be found in this tunnel, something happens to remind me it’s not completely dark here in my life as C’s parent. As I watched him tonight, miraclulously shoveling fistfulls of salmon and rice (two foods he’s never had) into his mouth, not gagging or covering his ears with his hands (shaking them instead, but we’ll take that), I was given a bit of happiness to temper everything else that’s been going on lately. I was reminded that I do enjoy being a mother while he read me a book, his voice full of inflection, clarity and excitement. His behavior made me revel in the entertainment of dealing with “sometimes almost typical” instead of “creature from the wicked planet.” Even if tomorrow is back to terrible, I will have at least had this brief moment of joy that will help me get through to the next moment of joy. And it is for that I am thankful this night.

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Entry filed under: autism. Tags: , , , , , , , , .

Dear Mr. Obama: Ode to a french fry

14 Comments Add your own

  • 1. looksgoodinpolkadots  |  November 13, 2008 at 9:50 pm

    Maybe there is something in the air because Little Critter has been the same way lately. I have started referring to her (in loving humor) as the Demon Spawn. Praying that we get through this! Like C, she does something precious right when I think I cannot take anymore! I’m glad to had some time to regroup, hopefully it will help in the days ahead!

    Cheers!
    Jamie

    Reply
  • 2. embracingspirit  |  November 14, 2008 at 4:29 am

    You are amazing!

    Reply
  • 3. Jesch  |  November 14, 2008 at 6:14 am

    First: salmon and rice?!
    Second: lean on us.

    Reply
  • 4. pixiemama  |  November 14, 2008 at 6:48 am

    Eating salmon and rice? That’s exciting enough to warrant a celebration! I know it’s hard, and I know what you mean about your marriage. My husband and I have been there and back many times. The hardest thing, I think, is to find a balance for your child, non-the-less your entire family. I have yet to find a way to effectively discipline Foster. For the most part, he could care less either way, and that drives me to the brink in and of itself. Sometimes I think that for him to have survived this long proves I’m not THAT bad of a parent…

    Hang in there, and thanks for letting the other side show a little.

    C too – consequences doesn’t seem to matter much to him, but when it does, it’s MAJOR MELTDOWN TIME! It’s like there’s no in-between. Grrr. But I do like the idea of “surviving this long.” Perhaps I just need to lower my standards just a tad and give myself a break…

    Reply
  • 5. Angie  |  November 14, 2008 at 10:14 am

    Hugs!

    Reply
  • 6. Holly's Mom  |  November 14, 2008 at 12:32 pm

    I am sorry to hear that things have been tough, I am glad you were able to enjoy that precious moment with him, and be reminded of why you work so tirelessly. You are a good momma.

    Thank you! 🙂

    Reply
  • 7. hopeauthority  |  November 14, 2008 at 1:14 pm

    On the theory that misery loves company, we are all living the same hell on the “wicked planet”. Most of our marriages are strained to the brink. I’d like to think that those that stay together were super strong to start with and have merely been weakened by the strain of autism. Its either that, or we realize that as hard as life is with autism, its better as a team than as a solo act, so we stay together because its the only real option. I don’t like to think that way.

    I think most of us just shift into the “ships passing in the night” mode where the whole focus is on the kid’s needs. We become only mom and dad, not husband and wife anymore. There’s no time for us and our needs. Not to sound like a martyr…its the way most moms are: kids first. But when one (or more) has special needs, there may be nothing left after you deal with the kids first. The love for each other is still there somewhere. It just doesn’t get expressed often anymore.

    Congrats to you on being able to find and hold onto the one thing you have to celebrate in the middle fo all the chaos. That’s more than many moms can do.

    Exactly. Nothing left sometimes. And exactly also on the celebration part. Those moments carry me through!

    Reply
  • 8. acollage  |  November 14, 2008 at 8:01 pm

    I loved this blog entry, and I think I needed to read it today! My little barnacle boy has had a tough week (or three) and he’s been what I call “24/7,” but earlier he was watching the latest episode of Avatar and giggling hysterically at two funny spots, so with the technology of Tivo, he was rewinding those spots over and over, laughing so hard he was rolling. I LIVE for the moments where he’s happy and smiling and not upset. Great blog!

    I hear you on the happy/smiling. There’s nothing better than that giggle when it happens! I let C yak away to himself the other night in bed for a long time without reminding him to go to sleep – just because I was so happy to hear something pleasant coming out of his mouth!

    Reply
  • 9. awalkabout  |  November 15, 2008 at 9:06 am

    Thinking about you and knowing things will get better–and worse– but C is lucky to have the two of you all to himself. It allows the luxury of attention others don’t get. Hang in there!

    It’s true – he gets our full attention which could in fact be a part of the problem…!!!

    Reply
  • 10. mama mara  |  November 15, 2008 at 4:06 pm

    I used to pretend to others that I was serenely and capably handling the challenges of autism, which cemented this idea in my head that my struggles were proof that I was a terrible mother. But when I stopped hiding my angst from everyone around me, my feelings inadequacy lessened quite a bit. Turns out that when people hear how hard it is to be an auti-mom, they think I am an angel-saint for not running away from home or having a nervous breakdown. Now I keep it real, and this keeps me sane(r).

    Good advice, to be sure. Sane(r) is all good. 🙂

    Reply
  • 11. Casdok  |  November 16, 2008 at 11:17 am

    I hope you get to the bottom of C’s behaviour, i know all too well how difficult times like these can be.

    But salmon and rice is awesome!!!

    It was pretty amazing! Of course today I put out a tiny cookie and it’s like I’ve put dog poop on the table! There’s just no telling what’s going to be acceptable and what isn’t – as I’m sure you know.

    Reply
  • 12. robinaltman  |  November 16, 2008 at 11:44 am

    No matter how frustrated you get, I will always be a fan, and be full of admiration. I practically wanted to divorce Adam over out kids’ bar mitzvah, so I can only think that the challenge of raising a child with an ASD would do us in completely.

    It’s interesting how disconnected we can get from each other! It is astounding the divorce rate for parents with children with ASD. Very sad.

    Reply
  • 13. therocchronicles  |  November 17, 2008 at 6:19 pm

    I just found your blog and read the whole thing! You speak your mind so well and I can so relate to you! I needed to read this entry as well as “The Other Mother” post – which had me in tears by the end. Very well written.

    Salmon and rice–gotta try that one! You go Momma!

    I sent you an email. Thank you so much for visiting! Please come back!

    Reply
  • 14. Goldie  |  November 19, 2008 at 12:08 pm

    what is it with our kids? change of seasons? P also just came through a HORRENDOUS spell. Even his speech teacher noticed… she every week for a whole month she was like, “What’s going on?” just this past week it got easier.
    hang in there, babe. you ARE doing great. I know it is soooo hard.

    and hooray for a new food!!!!

    Reply

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