Saturday, July 12, 2008
It is to early in the morning and I should be asleep but my mind is racing and I feel like I need to unload. If you don't like unloading you should visit someplace else.
When we had Tyler our whole life changed. I honestly wouldn't change much of what has happened because it has shaped who we are and has helped us grow in a way that I don't want to have to experience in any other way. But in a sense it has changed me. Change is not a bad thing. It has made me more aware and I am more in tune to certain things. But it has made me aware of more ignorance than I thought there was.
Some things that I notice are strange gaits in children. Strange eye movements. Strange behavior. "Not Typical" things that a child is doing. When I see those things I give a look to the mom, a little smile that lets her know I get it. I then talk to the child or person and ask how there day is and how are they doing. The mom gets this smile on her face like "I wish more people would treat us the same." How do I know this mom is feeling this way? Because I WANT THEM TO DO THE SAME!!
A little example. One day a few weeks ago me and Tyler were out grocery shopping. Next door to the store is a gas station that has great fountain drinks. Dallas enjoys a surprise soda and Ty loves getting a little cup. We decided to stop. I get Ty out of his car seat and carry him in. I set him down and I fill up three sodas. I balance them to the check out and go back and get Tyler. Pick him up, chatting and smiling and talking to him. Pay the cashier and politely ask if I can leave a cup there and come back in a second. She said "Why don't you have your boy walk? He is old enough." I then stated " Oh he doesn't walk but I will be back in a second." She then proceed to tell me that she hates it when parents make their kid lazy by carrying the all over the place when they should be walking. I look at her and say He CAN'T walk. Trying to get her to see the CAN'T in it. She continues to go on her tangent. I leave. I don't say anything about. I worked and went in later that night and the same lady was there. I told her that my son was not able to walk yet because he of his "issues." I left it at that and she has no longer made any comments including cordial ones when I see her. I see ignorance in this women. I am the same person I was when she saw me before but she doesn't. She gives me this look of pity.
I don't need pity.
I have met a wonderful group of ladies on a Mormon Mom group. Comments are made a lot of how miserable being pregnant is and comments like that are not always hurtful. Just when they start around 32 weeks. We all know my feelings about complaining pregnant women. But the worst was today. A comment was made in regards to a potty training chair. While it looked "different" than any chair you would find at walmart for your typical 4 year old learning to go to the bathroom, this child was OBVIOUSLY handicapped. How did he look handicapped? One he had AFO's on his feet. That in itself indicated that he had some sort of balance issue. But here was this mom making fun of the "device" that is helping one mom somewhere, and maybe more than one mom, reach a milestone of having a child be potty trained. Ignorance again. Why is it that a mom with a special needs child shouldn't be able to feel the joy of a milestone meet just because the device is looked at like a "torture" device? Do you think I like strapping on braces on Tyler's feet that look something like a torture device just to get him to walk or stand not on his tip toes? Why make fun of something like that.
A mom in my ward has a child with Autism and we have several of the same therapists. We, ironically, on our own have become friends and have had a great time discussing the ups and downs of having a child be "special" in our ward. While the gospel is true and correct the people sometimes make me ill. While I realize I am passing judgement, and to some it might seem hypocritical it truly makes me sad for those who are ignorant.
Before me and my new friend had met we were trying to place a face with a name. She asked her neighbor if she knew who I was and what I looked like. The neighbor proceeded to tell her that I have a disabled son who was "mentally retarded." That was how she described me. She didn't say " Oh you know the Chubby lady with short brown hair that wears glasses." No it was the lady with the retarded kid. One, Tyler has no MENTAL anything. Tyler has no issues Mentally. He is Physically impaired. I realize this more than you know. I do. I get that he is impaired. But really.. Don't let your ignorance show through.
The Church has many resources to help those with special issues. Our ward is making a special nursery. But they have forgotten to put typical kids in it. Don't segregate them because they are different. They still need regular social interaction but don't' shove them into a room with 14 kids and wonder why they don't do well. But don't put them in a room by themselves and wonder why they aren't flourishing. They are people who have extra needs but shouldn't be locked into a room by themselves.
So what can you do, what will make us happy? What do we want?
Here are a few suggestions from the Ensign:
Following are some ways to help support parents of those with disabilities:
• Ask parents about their son or daughter. Be willing to listen.
• Don’t dismiss parents’ concerns about their child’s development.
• Don’t expect parents or siblings to “come to terms” with a family member’s disability quickly.
• Don’t suggest that parents were given a child with disabilities because they are so strong. This can prevent parents from expressing their true feelings.
• Make specific offers of help to parents, their child, or their other children.
• Provide physical arrangements in the chapel or classrooms to make members with disabilities and their families comfortable.
• Educate your family and other ward members on the child’s disability, and encourage them to set an example of compassion.
• Bear testimony of the Savior’s love for everyone.
The song in Dumbo says it all.
"If they knew sweet little you
They'd end up loving you too
All those same people who scold you
What they'd give just for
The right to hold you"
Something I can NEVER duplicate in my life is the Spirit of Heavenly Father when I have Ty with me. What a joy he is to me. I love him so much. The ignorance I have felt by so many people who were taught that God loves EVERYONE. That these sweet little babies who did NOT ask to be given these horrific trials carry a spirit that you cannot duplicate. As this sweet amazing spirit lives in my home and I continue with the challenge of teaching him I realize that ignorant people have no right to hold that. They have no right to hold the Spirit that we have been entrusted.
The tears flow as I sit here. I NEVER wanted for my child to struggle. No parent ever wants to see them in pain. No parent doesn't want their child included. No parent would ask to walk through hell to get to enjoy something as sweet and Innocent as a child. What I wouldn't give to have his days filled up with painless days of no therapy and countless appointments. Instead always fun filled days, we get days filled with therapy, doctor appointments and stiff muscles.Not to mention skinned knees because he can't walk but so badly wants to be mobile.
Why is it that you people who are ignorant get to raise "typical" kids? Your typical kids are going to be going to school with my "special" kid. And you are teaching them your ignorance. He has to live with what you don't know and don't bother to find out.
Ignorance sometimes makes the most educated person seem so uneducated.