The reality is, this is what we all think, at one point or another.
Sometimes it has been hard to see the light through all the situations. And I feel like people just don't fully understand the place we are in. Faith can be an amazing child, she IS an amazing child. She is our miracle, and she always will be. She is full of life, cuddles, love and curiosity. She really does fill our home with so much more...of everything.
The last few weeks have become very difficult for her. She has become defiant, aggressive, angry and most days, intolerable.
I have heard it could be due to the changing routine, the fact that she knows things are changing, she knows she will be going to a new school...that transition...
I also know that our family situation has changed, and that is playing a role in the behaviour changes as well.
And, she does have a brain injury. We have always been told that as she grows, and her brain grows, we are going to see a lot of new behaviours and signs of the actual injury.
I contemplated whether I should post this pic on here or not, but for those who don't believe what goes on in my house, here it is.
Last night, Faith had been playing nicely in her sisters room. She started to cause problems and the screaming and crying started, from more then just her. So, we removed her from the room.
This is what ensued after that "transition"...
After she started doing this, I used my NVCI training and put her in a safe hold. Her arms wrapped around her chest, in a non-threatening way, my legs wrapped around hers, while she was standing and leaning into my lap.
I held her there for 3 minutes, while talking to her the whole time: "Faith, are you done?" "Faith are you going to lay down nicely?"
Her response each time was: "Oh no, no, no".
So, I let her out of the restraint and she very calmly came up on the couch with me and snuggled up on my shoulder, neck, side...
Last night, I felt the same way that her sibling felt this morning when she screamed "WHY CAN'T YOU JUST BE A NORMAL KID?"
And you know what? I didn't discipline her for saying that. Because, how can I discipline someone for the same thing I was feeling?
And then the question of "What is normal?" comes up. And we can be so cliche about it all and say, no one is normal, but the reality is, a 4 year old can dress themselves, a 4 year old doesn't paint nail polish on their whole body...just before school, a 4 year old can talk to you and tell you how they are feeling and what they are thinking.
Faith is not 4. I know that developmentally she is 2, but even a 2 year old can do many of these things.
Faith has no control over her emotions, and her outbursts. She just doesn't. Faith is stronger then any child I know, even up to the 10 year old...
I can barely hold her when she is raging, I can hardly handle the fighting back that she does...and she is only 4.
Last night my thoughts went to: "How young can a child be to be put into a home?"
And that makes me sad, but how much longer can I sit in this house and watch the other 4 kids go through the pain and suffering that they should not have to go through.
How much longer do I sit here and let her hurt me and others?
How much longer do I live this life that people just don't get?
Because of Faiths needs, I have very small windows of opportunity to get things done...so, most of the time, nothing gets done.
I feel like I am just at the end of my rope. I really do. And I don't know what I am going to do with the summer coming up. Faith will be here 24/7.
I don't get the respite I need. The government thinks it is ok for respite and SSAH funding to be frozen for so long.
Where does that leave us? The families that are in a constant struggle to deal with this in their lives?
Suffering, Questioning, Fighting, Crying....
This is where I am at.
And that is the end...
I'm so sorry honey.
ReplyDeleteI know that Aiden only has a fraction of the issues Faith does but his anger and aggression terrify and frustrate and depress me regularly. Before he was on his medication and he was hitting/kicking/punching us all day long every day I didn't know how I would survive. That's how I ended up calling every mental health professional in the phone book until someone would see me and crying in her office. That was before he was diagnosed with Autism.
His meds don't fix it- but they do make it a lot better. He is more verbally aggressive now, instead of physically.
But I have totally wished for normal.
Our feelings are legitimate. It is overwhelming. It is painful to watch your child suffer and not know how to help them. It is painful to watch your other children suffer and not know how to fix it.
I held my son Owen this morning and let him cry - again- because of the hurtful words his brother had screamed at him. We KNOW it is because of the Autism and ODD but it doesn't make it any easier.
And we are also on the waiting list for respite. We accessed some from our local mental health office though. We also get counselling from them. The local Ontario children's mental health office here has been a lifesaver for us. Our counsellor meets with all 3 of my kids - Aiden to work on anger management skills etc. and the other kids to help them understand their brother and deal with the hurt. I meet with a counsellor too because I need it to cope.
And my house is a mess a lot of the time because there is only so much you can do. I get it.
Enough rambling from me. Just wanted you to know your feelings are ok and I get it.
Love to you Ruth.
Hugs, Ruth! I can only imagine. I hope you can get some more help.
ReplyDeleteLove you,
~ Raylene
I have no words to offer other than I love you, Faith and all your children. I know you are doing everything you possibly can and that matters. You're a very strong woman, this is very clear to me, and even though I'll never fully understand what you go through (and what you're family goes through), I am always here for you.
ReplyDeleteI can't even imagine what you go through Ruth. My heart goes out to you. I am so pissed at how the government treats those who so desperately need the help,and then they want our vote. It's brutal. I do hope you are able to find some respite somewhere for the summer.
ReplyDeleteI'm sorry to hear it's been very rough for you and your family. I'm sure Faith is feeling the stress that is felt by the entire family as well which is like a vicious circle. I know how hard it can be with my son Nick and his autism. There are always changes in behaviour. What I look at with him is change in the weather, anything in his diet that may have changed. Currcumstances with my jobs. Maybe there is something going on with Faith you don't know. What is happening in school? Could she be in pain or discomfort? You've probably thought of all this already. If nothing else try and access resources in the community. DSAC will help you lots. You have to fight to get Extend-A-Family's attention. Kidslink is also wonderful. They can provide respite for you. K-W Habilitation takes applications for respite, but it may take a long time to get on. You can also try there. There is help out there and you don't have to try and do it on your own because believe me, you will burn out. I hope something in this reply has helped. Good luck Ruth.
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