I have tried to get a follow-up appointment with Dr Childer's up in Jacksonville, FL. We need to meet with him to hear his diagnosis for Iryna. It's taken months to get to this point and right now they say that they are booked until April. I even offered up the idea of skyping with Dr Childer's, but they said that wasn't an option. I have made an appointment with Iryna's psychiatrist, but his first opening is next Friday. I feel like I keep hitting a brick wall when I try to be proactive in helping Iryna. It is frustrating.
Moreover, I am concerned about what Iryna's self image is - when she is often making poor choices, will she view herself as someone who cannot make good ones? I want to raise her as a confident, independent woman. Someone who can lead her life and be happy.
I read that it's important to not focus on trying to change so many things at once, so I am choosing to focus on one thing: Iryna's hair. She loves it when I fix her hair, but she takes it down almost as fast as I fix it. I fix her hair before school and when she comes home it is down. However, two times I told her that she would get a reward if she kept her hair fixed while at school and both times she came home with it fixed - so I know that she can do it! I want to keep working with her on this so that she can learn to leave it fixed and perhaps it will build up her confidence. One thing at a time.
7 comments:
Just sending love and understanding! There's nothing easy about parenting special needs kids...and there's no one sure fire way to make things work.
A couple things that struck me, though, that you might want to do some research on and then ask your docs about when you do get in...
Complex PTSD (C-PTSD)
Developmental Trauma Disorder
Sensory Processing Disorder
My son is telling me I should just say "Nice blog post" but that's because he wants to do his homework! I do think you are doing an amazing job. I can't imagine trying to be calm and unruffled while dealing with things that make me want to scream. No, that's not true, I do that, but not on the continual basis you do! I don't know if you already do this, but the most helpful thing for me was to see a family counselor. I went with the kids. My goal was to be a better parent to a specific child (the Aspergers one) and she helped me to be a better mom to all of my children. It wasn't a big deal or a big production. I just went once a week or so and talked with her about the issues I was having or problems with the kids and she was really good about offering suggestions. And she was great at pointing out things I needed to do better. Having 3 little children crawling all over helped her see how we worked, and gave her a decent view of my parenting. To this day (4 years later!) it is still the single most helpful thing I have done as a mom and I miss her still.
So I was just one of those blog "stalkers", mainly because when the time is right, I will be adopting my kids. Reading adoption blogs, I feel kind of gives me an idea of what might come my way in terms of trauma, attachment issues etc.
I used to work as an ABA therapist and one book we used with some of the kiddo's I taught was called "The Way to A", it's about teaching kids to make "good" choices and the benefits that come from them etc. Maybe it could be a tool for Iryna to use?
http://www.amazon.com/Way-Empowering-Neurological-Disorders-Aggression/dp/1931282870
You are brave for reaching out and asking for help and encouragement. Not many would do that, and instead suffer in silence which means ultimately their children will suffer. Good on you!
As Dory from Finding Nemo says: 'Just keep swimming,swimming,swimming...."
Jill, it sounds like you have a plan. The problem is that it's in the works, and not quite yet to the carrying out part. But having an actual plan is a good place to start. Get her the medical attention she needs. Have you or the doctors considered that maybe the medications are not working well with each other? Maybe simpler (fewer) is better for Iryna's system.
As you know, I've been out of the church for a good while now. I'm just getting to the point where I can go to church again and not be hostile about it. There's still some things I'm thinking about that are holdouts for me. But since you do go to church, have you spoken with your bishop? LDS Social Services might have some resources that you don't. And as Iryna's mother, you are entitled to the inspiration for her needs. Ask. There are definitely times when I feel the limits of my capabilities, though my needs are different from yours. But it sounds like you're doing the right things. Take comfort in that. I like it that you're focusing on one thing at a time. Keep it up!
KC
Oh, my dear Jill...I can only imagine the emotional roller-coaster you and Tyler go through in raising these children. Iryna sounds like such am amazing child, and you have been entrusted to be her mother because the Lord knows that you can help her be the best woman, the best daughter of God, that she can be. The question is how you do that...if only I could help you figure that out, I would. I know you can, though. Continue to pray, continue to counsel with the Father of us all, and He will guide you, because He knows Iryna so well and He wants her to be happy, too.
Love you, Jill! Hugs!!!!
You are a great mom! You love her and you are doing your very best for her. Things will get better. Your family is in our prayers. We love you.
Hi Jill! First off---big HUGS!While I know each family and child relationship is unique, I can say I relate on some level. ;) I've had such a struggle with Joseph in the past---hurting people, tantruming, breaking things, being manipulative and/or threatening to kill himself. It was tough trying to calm him down for hours while he raged and spun out of control...not to mention the poor example he was setting for the younger kids that would imitate behaviors b/c they thought that was normal or okay---I found I didn't have time to help them as much as a lot of my time was being monopolized putting out fires caused largely by Joseph. It has been a rocky road, but we've finally found some peace! About a year and a half ago we decided to try out the ABA services offered through Tricare. They send a Behavior specialist out to evaluate things and then you get a tutor. let me tell you---this has CHANGED our family! Our tutor and me and Eldon were able to pinpont goals for improvement in behavior and then he went to work, coming 3x a week up to 12 hours a week to be a friend with Jos and to be the one to take charge when meltdowns or behaviors struck. This has been a lifesaver for me as I've been able to to have time for my other children who have felt left out. I've gotten a bit of my sanity back and our tutor has also given me and Eldon many tools for communicating and helping to keep the peace while still handling issues as they arise. We are so grateful for this!! Joseph has made HUGE progress---he is doing so much better socially and has almost no more meltdowns. He still has issues but life is more manageable now. If you haven't looked into this already---I highly recommend it! xo
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