Is anyone willing to admit that nothing works Part 2 , Advice to Newbies.

Discussion in 'General Parenting Archives' started by Fran, Nov 5, 2003.

  1. Fran

    Fran Former Site Owner

    This is a continuation of Busywend's other question.
    Busy Wend, the thread was getting too long. I thought we should start a new one with the new question.
    I will lock the other thread.

    So the question is "what would you tell someone who is starting out on this journey?"
     
  2. Fran

    Fran Former Site Owner

    Advice for a newbie.....

    Dig in, it really is a marathon and not a sprint. It is a chronic lifelong issue that will affect your other children, your marriage and how you view yourself.Forget about the quick fix or magic pill. It doesn't exist.

    Compartmentalize. Give yourself time to be something other than a warrior mom.

    Look for things that you do right and start telling yourself the positive of your day. Look for things husband does right, easy child's do right, difficult child do right. Starting that internal dialog towards the positive instead of always the negative can create more change in you(not much for difficult child)

    Remember that difficult child's are suffering too. They are after all not their diagnosis. They didn't start out trying to stress you. They are still kids that need the same sort of parental attention and love and nurturing but their behavior makes it almost impossible. You have to be creative in making the difficult child feel loved even when you want to disown them.


    Most important- don't listen to family, the neighbors, the mailman, the grocery clerk about your child and his disorder or behavior. You get an expert opinion and then a second. You become the expert on your child.

    I guess that's what I would tell someone who was just starting out.
    Might scare them but it is what I would have wanted to hear.
     
  3. busywend

    busywend Well-Known Member Staff Member

    Can we paste the previous responses? Soemone had an idea of putting the reponses into one thread to be archived and we could refer newbies to it. What do you think?
     
  4. Sunlight

    Sunlight Active Member

    I would say to never give up hope.
    -to try all that is suggestion regarding medicine trials, behavior modifications, and counseling.
    -to read "boundaries" by townsend and cloud and "codependent no more" by melody beattie
    -to never stop praying for and loving your child
     
  5. shad11_8

    shad11_8 Active Member

    I agree that it's hope that keeps us holding on and at times that's really all we have...

    Don't take anything your child does personally. You'll LIKE them more and it helps to detach. Go into their room and watch them sleep at night.

    Take care of you. Be willing to give some of the responsibilty to others sometimes...You can't always be everything for your child and the MOM.

    Read as much as you can. Knowledge gives power and confidence to be assertive. Know everything there is to know about your child's condition and behaviour how they manifest. Know what IS normal age appropriate behaviour...

    Find a doctor and therapist you like and try to stick with them...But recognize when they've done all they can for your child as well.

    sonja
     
  6. Fran

    Fran Former Site Owner

  7. Peter

    Peter New Member

    Ha! I agree with you Fran. There is no such thing as a cure for this type of thing.

    La cosanostra (aka this thing of ours)

    All you can really do is dig in your your heels and get ready for a long life. It's not going away any time soon. Eventually you become numb to it, not by choice, but for survival. I mean we all have a life to live as well. Though I still teeter on to drug or not to drug. Most if not all of the medications we have used only work for a short time and then it's business as usual.

    Our damage report for last month was one couch $1500 and one VCR $400 and no one provoked any arguements this was all done out of the kindness of the heart.


    Peter
     
  8. Booklady Clara

    Booklady Clara New Member

    Hello everyone,
    I am new to this sight. I don't know what ghg means or easy child. I need a little help. I have an 8 yr. old daughter with ODD and Sensory Integration Disorder. I have 5 children, she is the youngest and I noticed right off the difference. I thought I was crazy until she was diagnosed by a brilliant counselor at age 2 1/2. Much, much more. The post that caught my eye was if anyone would admit that nothing works. I will. Anxious to hear your comments and advice about navigating this site. Thanks.
     
  9. Peter

    Peter New Member

    Hello Booklady Clara. difficult child means "Gift From God"
    easy child means "Perfect Child"

    They are what they are I guess it's board stuff. Remember, as most of us do. You can call them other names as well. &^%&##%^^ or so.


    Peter
     
  10. Booklady Clara

    Booklady Clara New Member

    I am sooo glad I found you guys. None of my friends here have any idea what I go through on a day to day basis. My difficult child is 8. She was diagnosed early because she is my 5th child and I knew something was odd. She would not wear clothes or diapers as soon as she could get them off her dear little body. She got out of her car seat when she was 10 months old and we have had battles over seat belts since that day. She has sensory integration disorder (PPD) and she is particularyly sensitive to touch, including clothes. I found a counselor that was a nurse for 12 yrs. on the pediatric psychiatric ward in a local hosptial. She knew what was wrong. Another friend suggested Special Education pre -school in the local school district. We got her enrolled and battled getting her on the school bus for 2 years. The bus driver picked her up last and the helpers held her until they got to the school. You better believe I cherished that 2 hours of peace in spite of the guilt. Did I mention she was violently car sick even on short trips across town. She did not sleep. She still has to have a mild sleep aid. She went to physical and occupational therapy for 2-3 years. I think some of this helped. She gets along with others in school so far (grade 3) and gets very good grades. Reads at 7-8th? grade level. She still does not wear underwear, only wears slip on shoes (even in winter), summer dresses with no sleeves, no socks. She will wear a coat and occasionally mittens. Is there a limit to running on and on. Sorry this is so long. She has seen pediatricians, pediatric neurologist, pediatric psychiatrist, and a counsleor we see on a regular basis. I am an "old Mom" of almost 47. She is my youngest. 20 male easy child, 13 male easy child lives with my ex in California (no dear to him), 17 male easy child at home and 10 female easy child with my husband and 8 difficult child here in the Pacific Northwest. There you have it.
    Thanks!
     
  11. busywend

    busywend Well-Known Member Staff Member

    BLClara - you may want to start your own topic so people can see your info better. There is a 'new topic' button at the top right side. Also, you did write your profile correctly - just in the wrong place. You do not want to write it every time, so if you put it in your profile it will stay there every post you make. There is a 'my profile' button on top right, too.

    Yes, it is hard to get people to understand our everyday lives and what we go through. Most of us, only share with people we get support from.
    Mine has sensory issues, too. Never diagnosis'd but I know it. She has cut every tag off every shirt (or ripped them off causing a hole! :mad: ) and does not like to change the clothing from shorts to pants or pants to shorts for the change of season. It takes her some time. This year she never went to shorts in summer - pants the whole time!! :rolleyes: :eek:

    It sounds as if you have done some very good work for your difficult child. But, still frustrated. At least you have found us to vent and cry to. That is what we are all here for.
     
  12. Peter

    Peter New Member

    Yup. Start a new one.

    Peter
     
  13. PorcupineWhisperer

    PorcupineWhisperer New Member

    Advice to Newbies, Courtesy of Mike & the Mechanics:
    "So Don't yield to the fortunes
    You sometimes see as fate
    It may have a new perspective
    On a different date
    And if you don't give up,
    and don't give in
    You may just be O.K."
    /importthreads/images/graemlins/smile.gif
     
  14. Sheila

    Sheila Moderator

    So much I want to say, but difficult child has already "minimized" my nearly completed post once and it was lost. Lucky you! lol

    There are so many variables that can factor into our kids' behaviors and their ability and/or desire to respond to treatment. We've found our journey to be parallel to putting an ultra complex puzzle together in that even though the pieces were located to form the border, we were just getting started.

    There is treatment for all behavioral-type disorders, but not presently a "cure." Treatment requirements can range from behavior modification to medication(s) to an Residential Treatment Center (RTC) where staff are in place around the clock to everything in between. It's my belief that for the majority of our kids, a multimodal treatment plan for all environments will produce the best results .

    For us the plan includes or has included:

    Weekly play therapy for difficult child with-a pediatric clinical psychologist (3 yrs this month and continuing)
    Weekly counseling for husband and me (6 months)
    Formal behavior modification plan -- (8 months in the home; we were able to discontinue at the beginning of 2nd grade, but he still requires consistency)
    Lots of structure in the home -- (we relax it as difficult child is "ready" according to mom . lol)
    Behavior intervention - school (3+ yrs) - still in place, but relaxed in comparison to past years
    Accommodations in school (1-1/2 yrs) -- and I stay in close contact with-his teachers and principal
    Social skills training -- small and large group training (3rd grade only); creating opportunities in the home/family environment, social outings and via daycare to further develop social skills (4+ yrs and continues today)
    Occupational and sensory integration therapy - 6 months (supplemented by in-home exercises that continue today)
    Auditory processing therapy - 1-1/2 hr computer sessions five times a week for two+ months (in home)
    Reading intervention in school beginning in 2002
    Speech-language therapy 2X/week -- started in October 2003 primarily to address reading comprehension disorder, but other language weaknesses as well; supplemented in-home with-1 hr computer session every other week.
    Private tutoring 1 hr per week starting this week to address expressive writing skill delays.
    Medication
    Daily "therapy" for me via this board.

    And I've probably forgotten something.

    Without a doubt, medication is "the" treatment that allows difficult child to get the greatest benefit from the other treatments. On the other hand, without the other treatments, difficult child wouldn't have made the progress he's made -- and he's made tremendous strides. We've gone from talk at school during the 1st grade of difficult child being placed in an alternative school where "little academics is taught" according to the principal (warehouse for behavior problems), to me sending him to school knowing there's going to be a field trip (without me), and with only the slightest rise in my blood pressure. lol

    I wish, wish, wish, somebody had told me that co-existing/comorbid conditions is the norm rather than the exception, and that the comorbid condition(s) could be a disorder other than a "behavioral" disorder -- for instance, something like Central Auditory Processing Disorder (CAPD), fine/gross motor skill delays, etc.

    I wish somebody had told me that a psychiatric evaluation isn't enough.

    I wish somebody had told me that even though my 1st grader was an "A" student, he could have a learning disability that sooner or later would catch up with him. I wish I had known these type problems are also "hidden disabilities" and can only be ferreted out by sophisticated testing -- good grades and/or "observation" just doesn't cut it.

    I wish somebody had told me that knowing a list of symptoms isn't the same thing as really understanding the disorder.

    I wish the first psychologist had referred us to a Children's Hospital for a multidisciplinary evaluation rather than tendered an ADHD diagnosis, recommendation for Adderall, and a "if he's still having problems with-behavior, come back -- we can turn him around in 6 months." A multidisciplinary evaluation could have saved us a lot of time, unnecessary stress and emotional turmoil, and money.

    I wish someone had told us there are educational laws in place to help children with academic OR behavioral problems.

    I wish when the ADHD diagnosis was handed out, it had come with the address to this site. But I'm ever so grateful that I found it as early in difficult child's life as I did, while he still wanted to please us and before he got so beaten down that he lost the will to try. I do believe without early intervention, that's what would have happened.

    Know that it's okay to keep looking for answers when the answers you get don't "feel right." Trust your instincts. You know your child better than anybody in the world -- it doesn't matter how many degrees a professional may have. Listen with-an open mind then go from there.

    It's my belief that the greatest gift we can give our kids is to self-educate. Ask lots of question. Read, read, read, and then read some more.

    For us, treatment has been effective. Life's not 100% perfect, but it's a whole lot better than it was and I'm optimistic things will get better yet.

    There's always hope. Even if there's no immediate response to a particular treatment, that doesn't mean the foundation hasn't been laid and won't kick-in on down the road.
     
  15. TenderHeartBears

    TenderHeartBears New Member

    Never give up! This Post may get removed because of what I am going to say next...if it is...I understand.

    But, before I say what I want. We do use difficult child here...which means Gift from God.

    That been said:

    As I was taking my difficult child to his church youth group meeting tonight...I turned off the radio...and started talking. I usually plan what I am about to say...but this time I didn't...I just started talking and this is what I heard myself saying:

    Matt, I just want you to know I love you. You know how it says in the Bible that we are all God's children. God never gives up on us, he tries through our last breath to save our soul. We are all his children. You are mine, there is a reason we are going through this, it's God's plan. I will never give up on you Matt, until my last breath, I will keep trying.

    There was more in between, but that is the jest of it.

    My son, he brought tears to my eyes...he put his arm on my shoulder with tears in his eyes...and said simply "Thanks Mum". That's all I needed to hear...I knew he was hearing me.

    I hope this does not get removed before at least a few people get to read it. I'm not preaching....I'm just a believer.
     
  16. Marcie Mac

    Marcie Mac Just Plain Ole Tired

    I think my advice would be is to arm yourself with knowledge. If you understand why their minds are working the way they do, its a bit easier not to take it personal.

    And look for a little something every day that reminds you of why you love them so very much, whether it be a smile, something they said, and if its really been a bad day, the serene look of them when they are finally asleep.

    Marcie
     
  17. Rasin2

    Rasin2 New Member

    I would tell them it's harder to deal with this than you could ever imagine. Raising a difficult child is not for the faint of heart. It is a long term, life long committment. Let whatever dreams you had during your pregnancy about how your child will act and how your child will think... let them go now... they will only hinder your ability to deal with the child you have. Try to find all the positive attributes your difficult child has and focus on them. Eventhough your child may be a difficult child, that child will have many wonderful qualities if you can look beyond the difficult child behaviors. And when all else fails... remember it's the illness/unbalanced chemicals that cause the negative behaviors not your child and not you.
     
  18. KRice

    KRice Member

    I always tell someone new I meet about this site. :laugh: And explain that "it's a support for parents just like you and I."

    As has been said before educate yourself on your child's diagnosis's the more knowledge you have, the more power you feel you have. Follow your instincts, you know your child better than anyone, no matter what you might think or others might tell you. Speak up when you disagree with a doctor, counselor, teacher, or whoever is a "professional", they are no more expert on your child than you.

    Never, ever let anyone convince you this is your fault. We all make mistakes as parents, I know I've made some good ones, but they are not what caused his disorders. You've made some severe mistakes? Are you getting therapy? Are you getting counseling for how it affected your child? Great, you've taken all the steps you can to rectify it. Stop the blame game.

    When a "friend" says "if he/she were with me for 3 weeks, a month then I could straighten them out", offer to pack their clothes for them. :wink:

    When you are given suggestions or advice, take them as that. Use what you think is helpful and discard the rest.

    Find people who will listen and try to understand what you are going through. If you constantly get negative feedback or criticism from someone you confide in, stop confiding. You need support not criticism.

    Find one thing each day that your difficult child has done that is positive. And there are days this'll be a stretch!

    When you are angry, fed up, feeling like you don't like this kid at all, let go of the guilt, recognize that this is tiring and sometimes you just don't wanna play.

    Kathy
     
  19. Wildflower

    Wildflower Active Member

    Listen to your instincts.

    Learn as much as you can.

    Accentuate the positives, eliminate the negatives.

    Throw away the traditional parenting manuals and open your mind to an atypical world.

    Give as much love and as many hugs as you can.

    And most importantly, take time for you.
     
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