Kamiree: The struggles and triumphs living with Landau-Kleffner Syndrome
Thursday, January 5, 2012
Failure
The word "failure" sneaks up on me so many times a day. Today was one of those days where I felt like it over and over and over. Kamiree had her last session of the week today and did horribly. She would not cooperate at all as we sat there for an hour and 15 minutes so that the SLP would win...she did finally but I felt like a failure. Kamiree screamed, hit, kicked, yelled some more, for almost a whole hour. I don't know what to do differently. She was so awesome yesterday in speech and today she was a different person. When she gets in these moods she refuses to do anything. I watched in horror as she kicked and hit our new SLP, waiting to hear the words "Maybe she should see someone else." But luckily, she didn't say that. I want Kamiree to learn to speak so bad and basically control her..but I can't. In these moments is when I feel defeated in essence a "failure". For 100 miles today I wept knowing that there isn't anything I can personally do for Kamiree except get her the right help, she has to do it. I even yelled out "Why??" to God a couple of times realizing that my daughter is indeed special needs. I don't even know everything they have diagnosed her with still (waiting for paperwork) and even the ones I do know I am overwhelmed with. My perfect little baby girl is frustrated and unable to talk. I know it hurts her but man it sure hurts me to know that there is nothing I can physically do to help her. I want to be the one that is having to go to speech, I want to switch places with her so that she can live life like a normal 5 year old girl, not worrying about how to say words, but singing and talking like other kids her age. Today was a "failure" kind of day, I hope next week is better......
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Thank you so much for these blogs. They really help us know how to pray. As a Mom I can imagine the heartache of what seems like failure and the joy of accomplishments, in a situation like this. We have been praying for the SLP that works with Kamiree also. What a time in your life to just lay Kamiree in the arms of God. Not the easiest thing to do. I appreciate this blog! You are so open and honest and raw with your feelings and I love the transparency. God bless you and comfort you and encourage you!
ReplyDeleteThank you for sharing your stories, Shiree. Have you had Kamiree evaluated for sensory processing disorder? My son Nathan (who is also 5) has been seeing an occupational therapist for sensory challenges in the areas of sound and movement. His OT told me that many children with speech apraxia may also have underlying sensory integreation issues (over/under sensitive to sound, light, movement, touch, etc). We had never even heard of SPD until we started looking into why he was having some difficulties in preschool. What a special little girl you've been blessed with, and how lucky she is to have been blessed with you and Chris for parents. I know it's hard to deal with the emotional rollercoaster but you're doing a great job. I will keep you guys in my thoughts and prayers.
ReplyDeleteLife with a child with special needs can be frustrating, heart-wrenching, even maddening. Don't let the bad days take over. Find something, anything, that calms Kamiree, makes her know that she's safe and loved (holding her, singing softly to her, reading or telling a story, a soft toy especially with nice eyes, a pretty blanket . . .) When she calms down, remind her how important she is to you. There have been times when Seth is completely uncooperative with his therapists. I've had to take him aside and calm him and then stay with him to participate in therapy together (he has speech therapy and occupational therapy now and previously also had three years of physical therapy). Therapists usually understand completely all the different reactions that children with special needs have. It's their job to find ways around the behavior or ways to prevent the behavior.
ReplyDeleteI am reading this from a post you posted over a year and a half ago. Do you ever go back and read what you wrote and see the progress? You are a winning mother!
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