HI Everyone! I'm back...

Discussion in 'The Watercooler' started by Stella Johnson, Feb 7, 2010.

  1. Stella Johnson

    Stella Johnson Active Member

    Not for bad reasons. Mostly just checking in and reading here and there.
    It's like a blast from the past reading all of the different General forum stories.

    My difficult child isn't much of a difficult child anymore. She's turning into a sweet young lady. Still has problems making real friends but that's pretty normal for the junior high kids especially girls. There's nothing more evil than a group of 7th grade girls.

    She no longer tantrums, rages, or any of that. It's so peaceful in our house now.

    I remembered you guys after I met my new neighbor this week. I feel so bad for her. She has a 3 yr old autistic son. And boy is he a mess. Constant screaming, tantruming, raging over anything that isn't what he wants. He can't talk yet, makes no noises even remotely like he's trying. Although I've noticed with a few things he makes the same noise when he sees or wants them. Do do is dog I think.

    His poor mom looks beat down. She kept saying, "You are almost done now, look at me, he's 3". I remember looking at Fran and saying the same thing when my difficult child was 3. Back when she had been kicked out of her 6th day care program.

    I think she has haphazzardly read things here and there but has not come anywhere near a plan to help him. I threw out a few suggestions like keeping a rigid schedule which helped my difficult child immensely at that age. She thinks this is all an allergy to everyything in the world. She freaked when she came in my house and saw that I have dogs. I put them outside but the kid didn't sneeze once so he's not allergic. I think she must have read about food allergies possibly causing autism and took it to a new level. I asked her if he was seen by an allergist and yes, he was but they found nothing he was allergic to. So she has decided it's not nothing he's allergic to, it's everything he's allergic to :bag:I just bit my tongue. No point.

    This mom is in diar need of help at home with him. Part of me wants to help but part of me wants to run for the hills. The flashbacks of what i went through gave me PTSD I think. But I just feel for this poor woman. And her son too, he doesn't know why everything is different or that he is different.

    Just had to pop in and let you guys know that I do still think about you. Keep meaning to pop in more but I've been so busy.

    My doctor took me off work last September. I'm going on LTD now and soon SSDI for the neurological disease, RSD.
    It's nice being home with Sabrina but I crave brain stimulation. I loved my job. It still tears me up losing it. I haven't lost it yet. Still legally employed.
    I started an online message board support group for people with RSD. Also just started last week a radio show for the same type of people but it is expaned to have doctors, therapists, experts, etc speak to everyone. Last week we had almost a hundred listeners. This week will be way more than that. It's also geared toward chronic pain. So any of you with chronic pain that might be interested, just shoot me an email.

    I'm making custom made "RSD Helpers" for people like me. I make custom mittens for people who have problems in their hands or booties for their feet, or knees. All kinds of microwavable stuff for moist heat. A little of everything.

    I'm still painting. Still dating Andrew. It's been almost 5 yrs now. :surprise:

    How have all my old buddies been?
  2. Marguerite

    Marguerite Active Member

    Good to hear form you, glad things are gonig well for you.

    A suggestion for your neighbour, for now - the boy desperately needs help to communicate, and if words are currently a problem, then she should try compics, or some other alternative. He needs something he can use to help him communicate, then his rages might ease off a bit.

    I understand her desperately trying to find reasons she can grasp (like straws) to blame things like his rages on, but you should never underestimate just how frustrated kids can get, especially bright kids who can't make people understand them, or who can't understand other people.

    If it's any consolation, difficult child 3 was this bad and worse. And he's doing great now. He "failed" his first IQ test, we were told he was retarded and would never be able to function normally, would never be able to learn much, would always need a high level of care. But this year he's still worknig towards completing high school (at an age-equivalent level) but also being accelerated into a college course.

    WHat worked for us - stimulation. Communication. Support and encouragement, working with the child where he is, and moving from there towards where we wanted him to be. Slowly, and only as much as he could handle it. We've used computers a lot. Anything he was intereted in, we gave him more of it. For example, we realised he had a musical talent plus an obsession with numbers and letters, so we showed him how to read music. Because he loved alphabet, we taught him how to play the alphabet song on the piano (which is really "Twinkle Twinkle Little Star") and wrote out the sheet music for him. It was like a Rosetta Stone for him, and from there he began to communicate - first with compics (briefly) and then with the written word (on little cards like compics) and then (slowly) single words.

    It was an ongoing process where we had to keep developing things a little more, as he made progress. We did this without therapist support, we sort of worked it out ourselves in the absence of any decent support available.

    Of course, if you can get professional help, then use it. We couldn't, but still were able to help difficult child 3 make amazing progress, from that first very negative prognosis (he was 4 when we were told that he was always gonig to need a high level of care and would never learn).

    It's good to hear from you. We need success stories!

  3. Fran

    Fran Former desparate mom

    Good morning Stella. So nice to see you again.
    It's so unfortunate that you are still having RSD pain. I don't know how you cope the pain plus the loss of your job. I know you to be such a go getter.
    Sounds like you have channeled your energy towards advocacy. Good for you.
    It's wonderful to hear how well your daughter is doing. Trust me when I say you are never really at the end with a difficult child. Give her a hug for me.

    I know what you mean when you see a mom drowning and want to help but everything in you wants to turn away. You just don't want to deal with it. Pick and choose what you want to do. You don't want to be a miserable whiner who complains because you feel put upon. Don't be a martyr. Do it with a giving heart but keep clear boundaries, in your own mind, of how involved you want to be. Keep your priorities straight. Anyhow, that's how I did it and still do it. Giving begins at home and expands in an ever widening circle. It's your choice of how involved you can be.

    My difficult child is doing well. He isn't emotionally volatile but he hasn't found his own path. He is unsettled but he has grown a good deal and knows more than he did a year ago. So progress is measured in small steps at present.

    It's good to hear from you. I hope things progress with the RSD and difficult child continues to be such a shining example of success.
  4. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member

    Wow Steph,

    come a long way is an understatement. I remember those days of constant meltdowns, a trashed house, etc. How wonderful the Sabrina is doing so well!

    It sounds like you have accepted where you are and what you are dealing with and making the best of it by moving forward with a plan of action. That is admirable!

    Glad for the update.

  5. DDD

    DDD Well-Known Member

    Nice to see you. I'm so glad that Sabrina has made so much progress. That's terrific. Sorry about the pain issues but it is great that you have been able to find outlets for energy. Best of luck. DDD
  6. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Hey Steph...long time no see! Wonderful news on Sabrina. Growing up so fast.

    I could sure use those products...lol. Knees are killing me these days. I have developed spurs on the kneecaps. Ouch to put it mildly.