Over at 5 minutes for Special Needs moms a question was asked of the readers:
Where do you find your support? Has there been a special group that reached out for your child’s specific needs? Share them, you never know who might be in need of your information.
I must admit that I do not have a very large support system. The people in our lives include one friend, a lady who works here whom I consider as a friend, and social services program for children with special needs.
I can't say I can count on my family to understand what I go through with Aaron. I can count of them if I need something like a ride to a store or what have you. But to really "get it" and support me, no they just don't understand. I don't talk much about Aaron's medical status with them. They don't get. It's like I am talking a foreign language with them. So I with them I talk about Aaron as a little boy like any other little boy. I'm okay with this because they see him as a little boy and they don't see his special needs. They aren't in denial about it but to them it's not a big deal. I can appreciate this in some ways.
A couple years ago a few parents tried to make a group for moms and dads like us but it didn't work out. Everyone had their own lives to live and couldn't make time to attend or take part in a group.
I fail to mention that Aaron's father counts as a support person. He takes his son every other weekend and this is a lot better than nothing. I'd like more but he can't give more because he doesn't have the capacity to give more. At least he does what he can when there are those that just simply walk away. Recently I made a decision to have surgery for Aaron and I didn't consult his father first. When I came back from our trip and told him of Aaron's impending surgery and what it entailed he was okay with it. I appologized for not having asked his opinion first. His reply was "Whatever you need to do to make both of your lives easier I'm okay with it."
If I need any support I believe it's for me as a person more than as a mom. I tend to suffer from "care-giveritus", which is an affliction that affects the morale of the person caring for someone. Everyday becomes the same thing over and over and over again and all we do is care for the other person and forget about ourselves. We get lost in the everyday daily stuff of do and this do that for our child. In my case I forget to love myself enough because I've given that little boy so much that I haven't any more to spare for me! If I need to talk to someone I'll seek someone out and talk to them because I need to unburden myself. As Aaron gets older his care is not as physically as it is emotionally draining. He's not following typical development of a 9 year old and this gets very hard for me to deal with emotionally.
The internet is a BIG part of my life. There are other people in this world who can say with a kind word :Laura you're doing a great job! and this will make my day. This validates that all that I'm doing is not for naught.
I have to focus on two areas of support, as a mom and caregiver and as a woman seperate from mommyhood. I have more trouble identifying myself with the last one. I'm working on it though...one day at a time. Maybe this will help? *smile*
5 comments:
Lots of blog support to be had in my post tomorrow - a blog carnival on healing. Barbara
Oh Laura,
The job you're doing isn't an easy one, it wouldn't be anyone's choice. Thank you for writing this wonderful post, for sharing how hard it is.
That's one thing that really stunned me about having my life move into the special needs world, that all of a sudden there was a wall between me and all the friends and family that we just couldn't breech.
I'm glad you're finding your support online, I wish and pray that you find more people in your day to day life that are able to reach out to yo and give you those hugs when you need them.
You ARE doing a great job. You're doing a job no one else could for your child.
I think as moms we all loose a bit of ourselves in all the day to day stuff. I have also found the wonderful people online to be a great support. My family is so far away and I have no alone time. I want to say thank you to you for your truthfulness. It helps me realize that its OK to say that my kids are driving me crazy. You go through so much more with one then I do with 3. You are amazing and I thank you for it.
Hmmm... I think a wii would be fun too!! Not that either of us really has time! ;)
In a way, I think it's kind of nice, even if it must be also frustrating in a way, that your family sees Aaron as a little boy instead of his difficulties.
You're doing a great job.
My big support is the internet too! We don't have any local support groups in our area. I'm so inspired by you and that you're doing this as a single mom. There isn't anyone there to give you a break day after day, only every other weekend. I know I find it hard when Joe is gone on TDY and I so appreciate having him here, so I can only imagine having to be the sole caretaker 24/7 must be emotionally draining. I know it must be hard, but don't forget about being good to yourself too!
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