Saying hello, and wondering how you all cope. Sheesh!

Discussion in 'General Parenting' started by spongebobitis, May 8, 2013.

  1. spongebobitis

    spongebobitis New Member

    Hi everyone. Been lurking here for years, especially on the bad days when I despair of having any sanity left after 9,526,485 questions about the same things from my kid. I apologize for the long post - I'll only do this once. :)

    About me: I'm a 42-year-old part-time massage therapist, studying web design in my spare (?) time, and I'm married to a flat-out amazing 46-year-old man who works full-time in advertising. We have a 7-year-old girl who was diagnosed with Autism Spectrum Disorders (ASD) (asperger's at the time, which is an out-of-fashion term now). She didn't talk until she was 2 and we had almost no eye contact and very poor attempts from her at communicating before that, and I called in the Early Intervention people and they got her started on developmental therapy, speech therapy and Occupational Therapist (OT) until she went to preschool (special needs) at 3. Around the start of preschool, we had a pediatric neuropsychologist evaluate her and he diagnosed the Autism Spectrum Disorders (ASD). Haven't had another evaluation since, as we currently have no health insurance due to my husband and my career status as being self-employed, which in NJ means your insurance premiums are almost $20,000/year for a family. She does have an IEP for one more year before we need a re-evaluation, however. She doesn't take medications right now because she seems pretty stable despite her Autism Spectrum Disorders (ASD) quirks.

    Anyways, my kid is very smart, was reading at 2 when she was learning to speak, and does multiplication and division math on her own outside of school, for fun. She's also great at drawing and can figure out basic animation programs on the computer. She's very social and has lots of friends (this may change when she gets older, because she just doesn't "get" a lot of regular conversation - she just plays, and so far, her friends are OK with that). She's in regular grade 1 classes with an aide in the room (she is evaluated every month by speech and Occupational Therapist (OT), but currently doesn't need it), and is excelling. She suppresses all her stims in school, I think. Has great eye contact and loves to be touched and hugged. And she is a sweet, happy girl.

    But she is demanding. She'll decide to wander away from the house without warning if I don't keep a constant eye on her. She can't play alone for more than five minutes without yelling for me to be with her. Tasks like doing household chores are almost impossible for her, even with an illustrated instruction page to follow - I've given up for now on this. She does hand-flapping and furniture-bouncing, and jumping in place, along with some vocal stims. She has trouble dressing, brushing teeth, eating anything except about six foods, or doing anything without stimming movements and repetitive questioning. There are days where she can't seem to understand anything you say to her. Clothing, food, smells, changes in temperature, noises and crowds all bother her. And she has lots of tantrums, too. I've been glared at more times than I can count when she tantrums or inadvertently knocks stuff over in public, and I've had many people make patronizing judgements about what I am/am not doing right that is somehow aggravating her condition. Utter bull****, but there it is. I know you all go through this, too.

    I find this so exhausting, and I only have one kid and she's on the easy side of things. How do you parents deal with stuff like this? God, it's tough. I admire everyone here....and hope your courage will rub off a bit on me.
  2. DaisyFace

    DaisyFace Love me...Love me not

    Hello and welcome!

    There are no comparisons, here....every one of us has a unique struggle - though there are similarities, certainly!

    My first impression is that your daughter probably functions best with a lot of structure - is that right? It could be why she does well in an orderly school environment - but not so much at home where she is the only child. Tasks, whenever possible, really do have to be broken down into the smallest possible steps...with LOTS of reminders in between. And luckily, there are lots of choices when it comes to finding clothes and food that will help avoid sensory issues (maybe not quite *enough* choices, depending on the day LOL!)...
  3. InsaneCdn

    InsaneCdn Well-Known Member

    Cope? I didn't know I was coping! Surviving... hopefully. :D

    Mostly? toss out whatever the experts tell you that isn't working, and start learning to read your child.
    We had to shut down our lives (we have two kids, only one real difficult child), one step at a time, until life got simple enough for difficult child to cope. Made life a lot better - but very boring for the rest of us. And it took years of doing that, to build difficult child up to the point where we're starting to have a life. But it has been worth it.

    Ignore any statements about what she "should" be able to handle... non-typical kids don't go by the book (and many typical kids don't either!)
  4. spongebobitis

    spongebobitis New Member

    Daisyface and InsaneCdn - nice to meet you.

    @Daisyface, I think you are right about the needing more structure thing. She does say that when she gets home from school she's very tired, so that may also be part of why she exhibits more of her stims at home, too. And yeah, I repeat things a truly mind-numbing number of times when I ask her to do something. Just makes my heart glad to know there are others who know this feeling.

    @InsaneCdn, I have read your posts for a long time and your certainly are coping! Did it ease the boredom to come here and vent about things? I'm betting it did. I, like you, have a pretty skeptical opinion of most "experts" on things, but it's great to know there are people like you who've been there, done that and still take it all with a grain of salt. Books don't teach the real deal on this kind of parenting.

    Hope to meet many more friends here. Thanks for the welcome!
  5. trinityroyal

    trinityroyal Well-Known Member

    Hello Spongebobitis, and welcome.

    How do we cope? By ignoring the expectations of other people, whether "expert" or "layperson", and just dealing with what difficult child-life throws at us as it comes.

    In my case, being on the Autism Spectrum Disorders (ASD) spectrum myself seems to help a lot in dealing with my gaggle of Spectrum-y children. Our house and family life are very structured and sensory friendly so that I can function, so many of the things the children need are already in place, and we have resources available to implement any new things that come along.

    Time and experience seem to help as well. difficult child's challenges are pretty vast, and we've had to learn so much from dealing with him that the younger children's issues don't seem nearly so big and scary in comparison. Of course, none of the young-uns have hit their teens yet, so time will tell...

    Trial and error, and a willingness to tune out all of the Perfect Parents of Perfect Kids (tm) help tremendously. Do what you have to do, whether it's carrying your child out of the library in a fireman's lift while he throws the mother of all tantrums because he's grown attached to the coat hangers in the children's area (both literally and emotionally), or keepnig a giant chest of nothing but soft blankets in the house to deal with sensory emergencies.

    I can't say that it gets easier, but you develop better coping skills, Rhino skin and Warrior Parent armour.

    Glad you found us.

  6. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Hi there :) I know it does get frustrating.
    Does she have an IEP in school? Is she receiving any interventions for social skills? Any physical therapy?

    In our case, the various annoying behaviors really nosedived as our son got older, but he did have a lot of interventions.

    Welcome to the board :)
  7. spongebobitis

    spongebobitis New Member

    trinityroyal, thanks for the welcome, and your suggestions about the structured lifestyle and chest of soft blankets are great. I will certainly take them to heart since you are coming at this from a truly understanding, Aspie-ish perspective. And kudos to your perseverance with your difficult child. He is a very lucky man to have your guidance.

    MidwestMom, yes, we do have an in-school IEP. We don't have social skills therapy for her right now, because she seems to be popular with other kids and doesn't have trouble with the classroom demands from teachers. No physical therapy, either, although they will occasionally give her a cushion to sit on if she seems antsy in class (which she promptly gives away to her friends if they ask her for it). Is there a reason you ask? You seem like you might have an idea there. Thanks for the welcome, too. :)
  8. InsaneCdn

    InsaneCdn Well-Known Member

    Boredom? Life wasn't boring. Still isn't.
    But it was highly restricted, due to difficult child's needs.
    This just gave me an acceptable social outlet, and a way to validate some of my theories (after the fact).
    Didn't find this board when we were going through most of our stuff... sometimes I sort of envy those who do!
  9. Ktllc

    Ktllc New Member

    I think we all struggle to stay sane (at least I do! lol). Coming here, helps, knowing I'm not alone.
    Getting so targeted advice helps.
    Trying to make the home environment highly visual helps. Every little home improvement (picture of toys taped on the shelves so V knows where everything goes was my relaxing activity last night while he was in respite) seems to bring a bit more peace.
    Connecting with real life special need families also helps me a lot.
    Humor also helps, and that's where my husband comes in. He is often able to take things more lightly than I am, he has this certainty that all will be fine.
    Glad you decided to post. No need to struggle alone.
  10. TerryJ2

    TerryJ2 Well-Known Member

    Welcome, Spongebobitis.
    I hear you!
    You've gotten some great ideas here already.
    I have no idea how I cope. Some days I do, some days I don't. I try to get outside and walk around the yard every day. We have a wonderful garden and we live on the water.
    I sleep.
    I read.
    I hang out on this board.
    I cry.
    I write and journal.
    I cuddle with-the dogs and cats.
    Sometimes I hide in the bathroom. :)