I haven't given any updates on Charlie lately. I'll hit some of the high points to catch you up to speed.
As most of you know, after much prayer, talking, counsel, and soul-searching, we have decided to homeschool Charlie next year. It was a monumental decision for us and one that we do not make lightly. As parents, we are entrusted with our children's lives. That is not a responsibility that comes easy. Keith and I felt that for this year, it was in Charlie's best interest to be at home with us. As a sweet friend told me, "No one knows Charlie better than you do and no one wants to see him succeed more than you do." For this and MANY other reasons, we are excited to have him home this year. Although I never felt that I would be homeschooling, the more I look into it, the more excited I am. (That's not to say that I'm not overwhelmed too.) But I'm trying to go into this very realistically, realizing that there will be good days and bad days...but on EVERY day God's grace will be sufficient to equip me for the task.
In the meantime, we are pursuing further testing so that we can try to find how he best learns and how to overcome some of the obstacles he faces. He is fearfully and wonderfully made...we'd just like a little more info on that!
Part of that testing was to see a geneticist to rule out anything there. We got the results this week and everything there looks clear. We are to see her again next year for a follow-up to check his progress. As she said, "There are some anomalies and these tests will not rule everything out. However, he seems to be thriving at this point, so let's check-in again in a year." We are thankful for this good report.
Part 2 of the testing was to be evaluated by a speech therapist and occupational therapist. We saw the OT 2 weeks ago and have had our first session with her. She will work on his sensory integration issues (which will hopefully help with his frustration level and teach his body how to process different types of stimulation.) We were evaluated by the SLP (speech and language pathologist) this week and that meeting was very eye opening. It was one of those rare times that you take your car into the shop and the mechanic hears the "knocking" or you take your kid to the doctor and he hears the awful cough. Charlie exhibited almost all the behaviors that I see on a daily basis.
(This may get long, but I'm trying to keep a full record for myself of this journey.) Charlie was tested by a SLP student with the regular SLP observing and helping. I was permitted to come in and watch. After introductions were made, they asked him to sit down and put on headphones. The student put hers on, but Charlie was very apprehensive. We even let him put them on his penguin first. He never acted meanly or belligerent, just very hesitant. After 2-3 minutes, he finally put them on and immediately started pushing his hands together the way he does when he is getting emotionally overwhelmed. He never lost his temper or got frustrated, you could just tell that he was not processing all this well. He kept looking at me with his big brown eyes with this look that said, "I want to please you, but I'm scared." It broke my heart, but I sat and smiled at him and told him what a good job he was doing.
The first part of the test was listening to a series of 4 numbers being said and then he was to repeat them out loud. They did a few examples and each time when asked to repeat them, he would sweetly say "I don't know." They did a few for him, then started the test. I told him that his penguin couldn't hear the numbers and that Charlie needed to tell penguin so he could hear too. This helped a little to at least get him to try. However, out of 10 sequences, he was unable to repeat any of them entirely. (Strangely, he could remember 2 of the 4 numbers, but never the one in the third place.) They went on to a part of the test that sees if the patient can discriminate high and low tones. For example, "high, high, low" would be the answer. They tried for several minutes to get this, but he never could even answer these. They decided to skip this and go on to phonetic discrimination. They would play a sample that was static with a phonetic sound thrown in and he was to repeat the sound. Again, many examples were given and he was unable to do even one of the sounds. He sat there with that look of wanting to please, but simply not understanding what to do. Every answer was, "I don't know." They ended this test and went on to the next thing.
(During the first test, the regular SLP and I used sign language back and forth. She asked if he was ok with all of this. I told her that this is very typical for him. That if he is faced with a task that is unfamiliar, hard, or if he thinks he won't get it right, he simply shuts down and won't try.)
During the next test, they used a flip chart and started with things like, point to the cat that is not black, point to the cat in the box, etc... Charlie starting flying through this part of the test. You could see the life come back in his eyes and he became much more animated and interactive. He continued to look at me for approval and I kept giving him the "thumbs up." The questions covered things like, which one doesn't belong?, and what did he do first?, etc... At one point, she asked, "Where is your elbow?" He looked on the flip chart, but there was no elbow there. She said, "No, where is YOUR elbow." He touched his elbow. "Now where is your forehead." He pointed there. "Where are your eyelashes?" Immediately he got nervous and with a shaky smile said, "I don't know." She asked again. Same response. Wisely, the regular SLP stepped in. "Charlie, where is your toe?" He looked back and said quitely, "I don't know." "Well then, where is your nose?" He again quitely said, "I don't know." Trying not to cry and run out of the room with him, I smiled at the therapist and nodded my head. This is it! This is what happens every time. He knows where his toes and nose are, but when he was unsure of his eyelashes, he shut down. He simply was afraid to move on. He wanted to please, and wasn't acting up, but his confidence was gone and he had shut down. They were able to engage him again and finish the test. The student took him to play in the gym while the therapist and I talked.
I told her I was so glad that she had seen what she did. It's not only the lack on information that concerns me, it's his confidence and fear of trying. She said there are definitely some issues and things that they could work on. She asked what his plans were for school and I told her that we are going to homeschool him. She asked if I had checked into getting him services through the school system. I told her that he had been tested and did not qualify for any services. She asked if I had a teaching background. I told her I didn't, but that have a great support system and many friends who are homeschooling and that I had been homeschooled some. This is usually the part where I get the lecture about the preparedness and experience of the public schools to handle kids like Charlie and that I need to consider placing him there to get him help. To my surprise, she said, "I think what you are doing is really brave. I'm not sure I'd be able to, but I think you're doing just what he needs." I asked her about types of curriculum, such as phonics. She said to wait until she'd had a few sessions with him before picking anything out. I told her that I have a feeling we will need to start with preschool stuff in the fall and then maybe move to kindergarten things in a few months. She wholeheartedly agreed saying that he really needs to feel confident that he will be able to do school. (Turns out that was what she had done with the flip chart test. She started it VERY easy hoping to build his confidence so that when the harder parts came, he would be more willing to try.) I already like her.
So...we will be going to SLP/OT twice a week for a while and we'll see how things go. Thankfully, Charlie likes going and looks forward to it. We also have been accepted at Scottish Rite for their learning disability testing center. We will go there sometime in September. And that's where we are right now.
I love him! Of all my kids, he is by far the most caring and sensitive. I am so thankful that the Lord has given him a soft heart and I pray that it will be used for His glory. I pray that this year, the Lord will make his heart sensitive to Him and will draw Charlie to Himself.
Good helpers - December 14
5 years ago