Kamiree: The struggles and triumphs living with Landau-Kleffner Syndrome
Wednesday, January 4, 2012
Stares
I am writing this on my iPad so if there is a lot of spelling errors you know why. Tonight is me and kamiree's last night in Denver for the week. It has been a hard week for Kamiree. She has been a fighter not wanting to speak. It's hard to remember that speaking is very difficult for her and that's why she gets angry when she is pushed. Tonight we decided to go have a sit down meal since fast food is getting old real quick. As we sat in chilis I could see kamiree was agitated so I should have just left right then but we sat down. Within 10 minutes she was kicking the wall next to us so I got up and grabbed her and sat her right next to me where she proceeded to scream. I got so many nasty looks and glares. Okay people, I am already embarrassed at the fit my child is throwing so glaring at me doesn't help the situation at all. You never know what is wrong with the child who is throwing the fit.... It's not always the parents fault. Kamiree is disciplined accordingly but I also know if I give her "the look" during dinner she will scream and have a yelling breakdown right there. I now understand why a lot of parents with special needs children do not go out and eat. People are so judgmental!! I am learning so much through this process with Kamiree. To not have a "normal" child that deals with things differently than most people seem to be a crime in our society.
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This post has definitely checked me in my behavior. In moments like those, I believe you are exactly what Kamiree needs regardless of who is looking.Praying for you all....
ReplyDeleteShiree- Don't let the cruel world we live in stop you from taking your child out! Don't let them make you feel like you shouldn't be in society with her. The best thing as a mom you can do is take her out into public instead of keeping her sheltered because you want to avoid that embarassment. Don't let society win! You and Kamiree and the rest of your family have every right to go out and do things that everyone else does. You know I follow the study of autism because I am very intrigued by it, and people make fun or look down on them, but guess what autistic children are very brilliant as well as the adults and can and will learn, they just cant get words out in a sense. My point is don't be that parent that stays home or hidden because of how others make you feel. God has blessed you and your family with Kamiree for a reason, he knows that you are strong enough to take on the challenge of getting her the help she needs to allow her to live a 'normal' life! You have got this, I know that it is frustrating, and hard right now, but 6 months down the road when your daughter speaks something to you, it will be worth it. Never doubt God and we can never question him why... after all He is the ultimate healer and He knows your frustration, but the most important thing to remember when you feel the need to question Him... we have NOTHING to bargain with when it comes to God. He wins every single time. I love you and this is all new to you as well as Kamiree, I have been on the rehabilitation end, and I would never have walked away from any of my clients or people that I helped, seeing their progress and feeling their love and advocating for them and taking them into the community was the most rewarding best job in the world! Society needs to learn to not throw stones at glass houses, and to not judge, but in the end they will have to deal with Our Father on judgement day! I love you all so much!!!
ReplyDeleteShiree, I just found your blog and started reading all of your posts from the beginning. As you probably know, our youngest son, Seth, has Down syndrome. He has absolutely NO concept of boundaries, obeying authority, danger, consequences, and the list could go on and on. I used to be the "my children will NEVER misbehave in public" person and get irritated by other children who did misbehave. But now, I might even be seen joining in the misbehaving -- not usually, but occasionally. Going anywhere with Seth requires more time and much more patience. There are many stops in the middle of stores to try to focus Seth on being safe and nice. Every child is precious and beautiful and should be appreciated. Our job as parents is to TRY to teach, train, shape our children to serve God and to be testimonies of God's love and grace. That job is stressful at times and difficult pretty much all the time. Don't ever lose your hope and faith and your appreciation for the miracles that God has given you, regardless of how other people seem to react. A child with special needs is one of THE greatest blessings any parent can receive. Seth has opened our eyes and hearts more than any "normal" child could.
ReplyDeleteI've committed to read your blog. This blog really opened my eyes. Of course, I am not a mother and often I am the one thinking really mother, get your child underccontrol... I am thinking the child wants dessert or wants to stay longer, etc. I never considered the fact that the child may not be "normal." I love your blog and your willingness to be open. Your open ness opens my eyes. And puts my attitude in check. :-)
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