I have no idea what I’m doing

January 8, 2009 at 8:22 pm 9 comments

     I have always said I have a PhD. in the study of C, although I think it’s completely obsolete with each new day. When he was a baby, I would sit up late at night typing in keywords from neurology reports hoping to come across the magical answer to whatever seemed to be ailing him. Once we realized there was more going on than prematurity, I started reading. A lot. I had heard of every single genetic disorder, syndrome and issue, and I could rattle off the symptoms of many. None of them fit my C. Even the high functioning autism diagnosis we finally landed on doesn’t really fit C perfectly, but it fits better than anything else anyone has thrown on the table.

     Yet even with all that knowledge, I still feel ill-prepared to shepherd this amazing little creature through life. As soon as I seem to master one challenge, another comes along, and I’m stumped. Be it behavior or gross motor problems or apparent attention deficits, I feel powerless to figure out how to get through it in the most successful way possible. I’m always one step behind him.

     Some things I have down pat. But throw in a completely new issue, and I’m back to square one. I’m reading, questioning, discussing, asking advice and analyzing until my brain is full. And feeling frustrated that if and until I figure out how to deal with this problem number 4 zillion and 96, my child has to pay the price for my complete lack of experience. Where is the fairness in that?

     I should probably ask myself when I will stop expecting to have all the answers. When will I realize that raising this child is like taking a new test in algebra or physics in a different language every single day? Yet somehow, not realizing I’m doing that every single day is probably the most self-preserving denial there is. I think my brain thinks that every new challenge might be the last one, so when one more come along it’s not nearly as overwhelming as expecting them to come along all the time.

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

Wordless Wednesday Playdate jitters

9 Comments Add your own

  • 1. goodmum  |  January 8, 2009 at 8:36 pm

    If you ever find a way to stop wishing you had all the answers, please publish it. I will buy multiple copies of your book. Promise. We’re moms. Our “job” is to “fix” things and make life “easier” for our kids. I don’t think there IS a way to stop, is there?

    I suppose you are exactly right. I’ll keep looking, though, and let you know if I find anything, k?

    Reply
  • 2. jesch  |  January 8, 2009 at 9:21 pm

    thank goodness C has a mom like you…

    Reply
  • 3. mama mara  |  January 9, 2009 at 6:11 am

    I think denial is nature’s way of keeping moms from running away from home.

    I too keep searching the books for answers on a child who doesn’t have any books written about him. Taz’s therapist once said, “Maybe ten years from now, they’ll have a name for what we see with Taz. For now, we just have to deal with each of his complex needs the best we can. There’s no manual.”

    Ten years? I’m running away. Soon.

    If you run away, come here, would you? We could have a margarita or something. Or perhaps we should meet in Vegas??? 🙂

    Reply
  • 4. hopeauthority  |  January 9, 2009 at 9:52 am

    Life is NOT fair. Life is just life. But what should be some consolation to you is that you are one of the small percentage of moms who tries harder than the average mom to learn, adapt and make a better life for your son. So many moms give up hope and just take the easier route. They don’t question authority or seek second opinions or want to learn more. Its hard to educate yourself on all the available options, research school districts, advocate for your son, follow a special diet, etc.

    You do all that. And because you do, people expect you to have the answers. But you must stop expecting to have all the answers. You must realize that we don’t even have all the QUESTIONS yet.

    I think we should focus on the test of the day…whatever language it is in…and not look too far forward. Because those challenges will get here soon enough. And if we saw them coming…like the line of headllights from Field of Dreams…I think we’d be paralyzed with fear or just overwhelmed. And unable to handle TODAY’S test. It’s ok to just pass one at a time.

    Wow, that’s exactly what I was trying to say in my post, only you said it SO much better! LOL! Perfect, just perfect, and sage words that I need to remember. Thank you, friend.

    Reply
  • 5. therocchronicles  |  January 9, 2009 at 5:55 pm

    This is exactly how I’ve been feeling the last few weeks! We figured something out about the Roc this week and I was (and still am) elated!! Wahoo! Take that! But now a different problem has presented itself. It never ends does it?

    I do feel like I learn something new everyday (and that’s from both the Roc teaching me and my own personal constant study-if only I had applied myself like this back in college…), My brain is full and I have a different kind of “mommy brain” than the other mommies I know.

    I just wish there was more of a break between the “YIPPEEE, I got something” and the something new coming along. 😉

    Reply
  • 6. Good Fountain  |  January 9, 2009 at 8:46 pm

    I get this, I really do. I feel so underprepared for this.

    I read mothers talking about how they advocated for their childs needs at school and wonder … when am I going to figure out what those needs are?!? I am not there in the classroom with her and how she is at home and at school are different. I feel like I don’t advocate at all and worry that I’m missing something huge.

    I think you do an awesome job and are the perfect parent for C.

    I have always done a lot of trusting that the folks at school know what they are doing. When we ended up at a place where it was clear they had no clue what they were doing, it became quite clear to ME that I know more than I thought I did! And I became quite the advocate, much to my surprise. From everything I’m reading about the folks at Chee’s school on your blog, it sounds like they really get it and get her. I think you are doing great, and if/when the time comes that you need to fight, you’ll know exactly what you need to do.

    Reply
  • 7. robinaltman  |  January 10, 2009 at 8:18 pm

    Just the fact that you research, advocate and are so loving and flexible make C one very lucky little C.

    I kind of chuckled when I read “flexible” because I think I am anything but. HOWEVER, it’s nice to hear someone else say that because maybe I am a little bit more that way than I give myself credit for.

    Reply
  • 8. looksgoodinpolkadots  |  January 10, 2009 at 9:42 pm

    I second goodmum’s response!!!

    We still don’t have a formal medical diagnosis for L.C., and some say we may not for a couple more years… because some disorders on the spectrum cannot be confirmed until age 6 or so. I don’t know if I can make it that long!

    Every day I’m dealing with a different being… and maybe there is some peace in knowing that, and knowing that we aren’t alone in this!

    I keep reminding myself what C’s neurologist has been saying for years – that it doesn’t matter what the diagnosis for some of these kids because we’d still do the same thing we were doing anyway. I think he’s right, but given that I’m an answers kind of girl, it’s always been hard for me to swallow. I suppose that’s my lesson to learn in all this.

    Reply
  • 9. awalkabout  |  January 11, 2009 at 4:13 pm

    It is like walking on eggshells with these special ones, sometimes, but I can tell you from having raised five girls already, you don’t always know the answers for the children without issues either!! I mean, when is a girl old enough to date? To drive? To stay at a friend’s all night? To go to a boy-girl party? How much to spend on a formal for a dance? Should they go to work? When? Parenting as a whole is a whole mystery, Dr. Spock or no! Hopefully we keep a seat belt handy, a sense of humor, several ounces of courage, maybe some of Carol’s Bailey’s, and let er rip. 🙂

    OHMYGOSH I would not know what to do with a girl. I’ve always been thankful I had a boy – even though I am a girl, I’ve always found girls confusing. But yes, it is a wild ride no matter the kid, I suspect! Carol Bailey’s, huh? Sounds like a good plan…

    Reply

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