Monday, October 31, 2011

Raising a Child with Special Needs

I've been looking over the fence lately at the seemingly greener pastures. I know. I shouldn't do it. But let me give you a picture of what last Saturday night was like for me.
There was a brownie and chili cook off at the church. Paul was getting ready to start working a 2 week stint of the Midnight shift so I let him stay home. The kids and I went by ourselves. This frequently happens as Paul is usually working or gone for work/training etc. I love to cook and even if I do say so myself, I'm a pretty good cook. So I was excited to compete. We arrived there and entered our food and walked around.
It was decorated in a western theme and what did my son spy immediately? A stick horse. He was in heaven. But wait a minute here, go back two sentences before this. "A stick horse." One solitary horse for many children... Yeah, you can imagine. All the other kids were sharing pretty well. They also had 3 cowboy hats and a lot of the kids were content with those. Daniel however couldn't handle that horse being out of his hands or out of sight for very long. He fell apart screaming multiple times. The family that was going to sit with us got up and left. At one point I took him out to the foyer and was holding him as he was kicking and screaming and he peed on me. Yep, you read that right my 5 year old peed on me.
I should have left at that point. I really should have. But those brownies and the chili were dinner and I really wanted to compete. I went in and got the kids some chili and some kool-aid. They refused the chili but were excited about the kool-aid as they don't get that at our house. It of course was red and was spilled everywhere. I finally gave in and let them have brownies. Couldn't get much worse. We were eating alone, no one would come talk to us.
My Sweet Cowboy
Later in the evening someone did come up and talk to me for a couple of minutes and when I tried to tell her about my lovely night I was having, her response was- "Enjoy it. This is the best time of your life, it just gets worse when they are teenagers." Definitely NOT what I needed or wanted to hear at that point in my night.
To top the night off I didn't place anywhere in the top contenders of the chili or the brownies. I was so glad to leave and just go home by the end.
I am seriously thinking of swearing off all public functions forever because Daniel just can't handle them. He loves them but they are too stimulating for him and without me being right by his side the entire time it's chaos. Now someone should have known better than to have only one stick horse. That was a recipe for disaster without having a child with special needs there. And when I saw how he was going to act I should have just left. But sometimes being a parent of a child with special needs you just need some time to feel like an adult and feel social. It's very isolating as people don't understand when your child all of a sudden has a major meltdown, they don't want to get involved nor do they want to be around it if they don't have to.  Hence the family that got up and left for another table. I can't blame them. But it doesn't stop me from feeling friendless, silently crying for help, depressed, and generally unhappy with the people around me. Do I want to stay that way? No. Do I keep picking up and trying again. Yes. Feeling isolated is a VERY common problem for parents and siblings of children with special needs.
I recently read a blog post from one of my favorite blogs, Dandelion Wishes. In it she quotes people from a foster parenting message board she is on and how isolated they feel as foster parents. It was a real eye opener for me to find that here was a whole other set of parents who were experiencing a whole lot of the same feelings and frustrations. Maybe I just need to hang out with some Foster parents instead...  But check out Jane's blog Dandelion Wishes anyway. She is a Homeschooling, Catholic, Adoptive and Foster Mother and I promise some of her posts will make you cry and others will cause you to have hope for humanity like this one about a modern every day hero .
One of my hero's is my sister in law Tiffany. Her boys both have Fragile X Syndrome and Autism. You should check out her blog as well which is located in the column on the right Making Life Work with Disabilities . Her patience with her boys and the way she talks about them is inspiring to me.
Some days life with the doctors visits, therapies, school, and well just life get overwhelming. But I am trying to find moments for me and to enjoy the journey. Gordon B. Hinckley, (former president of our church) said, "Life is to be enjoyed, not just endured." 
This should be my new life motto. I should make a sign to hang in my house to remind me like the one I made last year that says "Grant me patience to deal with my Blessings".
I'm not really writing this to complain. Please know that. I'm writing this more to get it out of my system and document what this experience is like and maybe help someone else out there know that they aren't alone. And so that the next time you see a child falling apart in a tantrum your first thought isn't; it's the parent's bad parenting, and you might offer to help. (Personally when I see another child falling apart, my first thought is, "Thank you Heavenly Father that it isn't mine this time!" I'm bad I know.)

1 comment:

  1. I am sorry that you had to go through such a difficult night.
    I loved catching up on your posts- making hair bows, going to that cool hands-on farm, etc..