New to the group

Discussion in 'General Parenting' started by pray4rain02, Jul 18, 2008.

  1. pray4rain02

    pray4rain02 New Member

    Hello Friends,

    My name is Jewels. I am a 26 year old mommy of three kiddos. Rainy is six years old and battles a rare brain diease, thus far she has had 16 brain operations. Fox is four years old and was recently diagnosed with ODD and ADHD. I am learning about both disorders and pray that I will meet some friends here that will allow me to both vent, praise and express my concerns openly. Maxwell knight is my two year old little piece of heaven. He is going through testing to see if he is having any complications with his brain.

    I recently separated from my husband of 6 years and have begun counseling. I am not sure if anyone else here is going through similar issues, but I feel alone, and I feel frustrated. My husband doesn't like to talk about the kids health but as the full time stay at home mommy who is the care taker I need to be able to talk openly about my fears and concerns.

  2. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Just wanted to say hi. I don't have experience with kids who have problems due to physical reasons, but wanted to welcome you to the group. Weekends can be kind of slow, but others will come along :)
  3. slsh

    slsh member since 1999

    Hi Jewels and welcome!

    I've been trying to remember back to the early days when life was one long appointment with... someone, LOL. I guess the good news is I don't remember a lot of it? ;) My oldest was a preemie, a surviving twin, and has severe cerebral palsy (his functional motor skills are about on the level of a newborn) as a result of oxygen deprivation due to underdeveloped lungs at birth.

    I remember trying to go to some Mommy 'N Me kind of things early on but it pretty rapidly became clear that Boo just wasn't developing anywhere close to normally. I don't think I'm a terribly social person to start with, but I do think that as my focus switched to nutrition and Occupational Therapist (OT)/PT/ST, equipment needs, etc., I became even more isolated. My friends with neurotypical kids just didn't understand where I was coming from and quite frankly, I was too emotionally exhausted to explain. I did gradually develop a new circle of friends who had children with various disabilities and that was probably one of the greatest supports - it's nice to be able to discuss our concerns and fears with folks who are at least in the same marina, if not in the exact same boat.

    When thank you came along, I was completely awed by his development. I probably missed some early warning signs that there were significant behavioral problems with him because I'd never really seen first-hand "normal" development. Fortunately, when he was 5 and things really were getting out of hand with him, Boo was pretty stable. It's been a balancing act ever since. I do think my 2 youngers kids have had it pretty rough - they've had to endure countless doctor appts for one or the other older brother, and I can't tell you how many days have been spent in ERs for either Boo's seizures or thank you's meltdowns. on the other hand, I think the younger 2 are much more compassionate and have a positive take on disabilties. I also very much hope that husband and I have set a good example for them in dealing with life's challenges - nothing is guaranteed and you just kind of have to deal with what you get, you know?

    But I have the luxury of having been at this for almost 20 years now. ;) Certainly, 10-15 years ago, there were days I wasn't sure I was going to get thru the day with sanity intact. It's a whole lot to handle.

    I'm sorry to hear you're separated. I know husband and I certainly went thru a rough first 10 years - the death of our daughter and Boo's very sickly state at first. Then, as I'm sure you can relate, the never ending appointments and decisions and choices relating to Boo's care that husband was never around for because of his job. He's a "fixer" - and if he can't fix things, he just accepts them. It was a major problem because I'm a control freak and I can't control things, I have to vent and rant. It made for some really *really* tough times. I took his acceptance of how things were as him not caring. I was very focused on what was going to happen in the future and he is more of a day by day kind of guy. Ugh! Honestly, I don't know how we made it thru - I attribute it to sheer dumb luck.

    When thank you's behaviors really went south, my husband also was in denial. He thought.... well, to be honest, I don't know what the heck he was thinking, LOL. We talked divorce. I finally put my foot down and had thank you admitted after some very unsafe behavior at age 6 - husband was *livid* with me, absolutely furious. But... he wasn't home, he wasn't dealing with this out of control kid 24/7, and it just wasn't enough anymore that he showed up at night to pick up the pieces. There was something very seriously wrong and the counseling that we had done up to that point with thank you just wasn't cutting it.

    I think it's excellent you're in counseling. Hindsight being 20/20, it's something I should have done when Boo was an infant, and it's something I should have stuck with thru the years. It's so important to take care of yourself, emotionally and physically. I didn't get that until I was really falling apart. I think it's also really important to reach out to parents in similar situations. When you have a kiddo with medical issues and another with behavioral issues, I've found you kind of end up with 2 separate circles of friends/acquaintances. But having contact with folks who are traveling similar roads really is important - you learn, you teach, and you can share the fears that, in my experience at least, parents of pcs just cannot relate to. It's very validating to be able to say "I'm worried about... " or "I don't know if I can do it" and have people understand and support you.

    I am most definitely not the poster child for great mothering and appropriate coping skills. :) It's been an evolution over the years - trial by fire. I'm certainly far better at juggling the various needs of my kids than I was 15 years ago. I still don't take great care of myself but I do enough to keep on going, LOL - more than I did in the beginning.

    Anyway - welcome! Glad you found us!
  4. Marguerite

    Marguerite Active Member

    Welcome, Jewels. You are definitely not alone. We all have a range of issues which brought us here but there are a lot of people with a range of issues which cover your concerns too.

    It's a shame about your husband - but maybe if you can come here and talk, it could take enough of a load off him that he could engage at least as far as he can? I do know that even though husband is amazing, supportive and everything else, sometimes if I've had a bad day I still have to hold off dumping my day on him, if he's needing home to be a refuge from HIS bad day. He has told me that there have been some times when he came home from work and stayed outside, sitting in the car, reluctant to come inside because he knew it would possibly be a war zone here.

    And now he not only lurks on this site, he has joined in his own right! But I still avoid dumping everything on him. We have to find the balance between information overload, and effective communication.

    With Fox's ODD and ADHD diagnosis, I would use that to get support for him but keep an open mind. He is still very young and at 4, a lot of things can look like ADHD and ODD. There is also a lot YOU can do, without having to wait for an expert to tell you or write a prescription. If you've been lurking here you will know that we often recommend a book, "The Explosive Child" by Ross Greene, for dealing with ODD-type behaviours in our kids. The book is not a cure, but it IS a very effective management system.

    For an advance idea of how it works, have a look at the discussion on this book and how to apply it to younger children - it's at the top of the Early Childhood forum here.

    Welcome! Keep us in the loop with how you're getting on.

  5. TerryJ2

    TerryJ2 Well-Known Member

    Hi Jewels, welcome.
    Here's some iced tea and a lawn chair.
    You've certainly got your hands full, not only with-the kids' medical problems, but with-the ODD, etc. I feel for you.
    I am very sorry about your husband. I cannot imagine the feeling of loss, abandonment, frustration and anger. Aaaaaaarrrrrrgh!
    All I can say is that while he is being a &#$%^ about not wanting to keep up with-the kids' medical issues, he is also missing out on a lot of love, beauty and closeness. There ARE rewards, although they are hard to come by.
    His choice. Too bad.
    Defintely, you've come to the right place.
  6. TerryJ2

    TerryJ2 Well-Known Member

    Ooops. Once again, Marg, you've taken the high road and invited Jewels' husband to join the bb to lessen his stress. I just dismissed him out of hand.
    Sorry, Jewels. You can see we all have different personalities here.
  7. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member

    Hi Jewels!

    Welcome to the board. The great thing about finding your way here is finding out you are not alone. There are many here who are raising their difficult children alone, some whose marriages have ended because of the difficult challenges of raising difficult children. There are tougher issues when you are the sole caretaker for a difficult child. You have noone to tag team with.

    I'm glad you are going to counseling. It's great to have someone in person to talk to about what's going on.


  8. ML

    ML Guest

    Welcome Jewels! You are no longer alone :)
  9. Hi Jewels, Welcome! Yes, I have experienced the feeling of being alone in this also. Sometimes, it is overwhelming because my husband does not want to acknowledge all of the problems that my son has. He will be fine, etc. Well, just wanted you to know you are not alone. Your site is gorgeous! I love Rainy's room.
  10. Christy

    Christy New Member

    Welcome Jewels. While I can not imagine the stress and worry that comes from having a child with medical problems such as Rainy, I'd like to offer my support. As for the ODD/ADHD ad other behavioral issues, you will find a wealth of information, ideas, and advice on this site.

    Glad you've found us. Look forward to hearing more about you.