Wednesday, November 10, 2010

Painful talks

I have known that the day would come that I would have to talk to Andrea and Christopher about their sister. That they would need to know that she isn't like them and that they need to be sensitive to that. I never thought today would be the day. This evening I had this discussion with Andrea. Kaitlyn was playing with a new toy that my mom bought her. It is a Leap Pad toy that has a lighted screen and has games she can play to learn how to write. A tracing game for shapes and upper case letters and lower case letters... it's fantastic. I haven't been able to get her to trace with a pen and paper like most kids do in preK and kindergarten. The letter is already there so she will just tell me what it is instead of drawing it. This thing is fantastically different. The letter isn't really there because it's just lights, so she will write it. Then she can erase it and do another one. She will sit on the couch and play with it for an hour.. unheard of with anything but books for her. So anyhow.. Kaitlyn was playing with said toy, trying to draw a circle, when Andrea said "Nanee, your dwarwin is all messy! Is just a circwle. Do it better!" Kaitlyn responded with a "Stop Andra" and about 30 seconds later got up to do something else. I almost cried. How do you tell a 3 year old that her older sister can't do things as well as she can? I had no clue what to say, but I knew I needed to say something.. So that's what I told her. Kaitlyn can't do everything as good as you always. She can't run as fast as you, she can't color as good as you, she can't do puzzles as well as you can. But you need to be nice. Don't tell her it's messy, tell her good job for drawing! I don't know if Andrea gets it yet. I know she understands that Kaitlyn is different.. she has said as much to other kids, but I don't know if she really understands what it means for Kait to be different. Eventually she will.. someday Kaitlyn will know she is different. I'm sure that day will be just as, if not more difficult for me. It's one thing to know that your child is disabled.. it's completely different when they realize it!

Wednesday, November 3, 2010

Falling with style

We had our third evaluation appointment today. I can't tell you much about it though because I wasn't involved. I was there, but in the waiting room. This was Kaitlyn's behavior and intelligence testing day, so the doctors wanted to evaluate her based on what she was able to do without outside stimulation- ie mom. I talked with the psychologist for about 45 minutes before everything started. Kaitlyn was in with a therapist finishing some speech stuff. They recommended more therapy, as I mentioned last week, however today they did more evaluation to figure out exactly what else to do in therapy. The psychologist (Dr. Murphy) asked me some questions about the evaluations they did when we started at the preschool. I mentioned that they had done some intelligence testing in which Kait scored 3 standard deviations below normal. Anything in the 70 range is considered mentally handicapped, which is why we were accepted into the school. Dr. Murphy went on to explain that most school evaluations are primarily verbal. If a child has trouble with language development it can show false results on intelligence testing. I guess that could be encouraging. It remains to be seen. I have to wait a little more than 2 weeks before I will get to hear the results of all the testing today. Our appointment was at 1. We left at 4. She did really great for being peppered for 3 hours.. though they know how to make it fun I'm sure! We went to get Andrea and Christopher from the sitters and ended up staying to play for a little while. She (the sitters) had some very encouraging words for me. It's nice to know that people are praying for you even if they don't know exactly what to pray for. We ended up heading home during rush hour. What is typically a 20 minute trip ended up taking 1.5 hours. The kids were so exhausted and hungry. When we finally got home- at 7 p.m. tonight UGH!!- Phil had dinner ready for us. We ate and put the kids to bed. I think tomorrow will be nothing but cleaning and laundry! Forget going anywhere! :)

I was rather anxious before our appointment today. I don't know why it is that I can know everything and still stress. I guess it's part of the grieving process. I sent a quick text to my mom and a girlfriend just to ask for special prayer, and almost immediately the following verse popped into my head. I don't remember when I learned it, and at the time I didn't remember the reference, but it certainly helped my nerves calm quite a bit. Psalm 94:19 "When my anxious thoughts multiply within me, Your comforts delight my soul." I love it when God does stuff like that. A little while later the kids were watching the movie Toy Story and I heard the scene where Buzz tries to prove he can fly. Woody says "Oooh come on!! That's not flying! That's falling with style." I think today I am falling with style :) I think I'm flying. People that don't know better will likely think I'm flying, but really I'm just falling. Perhaps with a bit of flair and some pizazz, but it's still just falling. I'm glad I have God's strong and loving arms to land in at the end of that fall.

Monday, November 1, 2010

Appointment #2

We had the second part of Kaitlyn's evaluation last Monday. The appointment was at 8:30 a.m. in Westerville- which is about a 20 min drive from here on a good day with no traffic. We had to go during rush hour, so I was figuring it would take at least an hour. I had planned to leave about 7:30 and stop and get some doughnuts on the way. As I was getting shoes on and preparing to walk out the door, Phil came down the stairs ready to go. I wasn't expecting him to come with us, but I am really glad he did.. cut about an hour out of the appointment. Anyhow.. we got everything together and got in the car about 7:45. We stopped to get doughnuts and I, being the brilliant person I am, thought that I would run inside and it would be faster.... wrong. Hint, any place that specializes in breakfast stuff- we went to Tim Hortons- is likely really good at getting the drive through cleared first. So it was longer than it should have been, but oh well. We needed gas too, so we went across the street to get gas, but the pump wouldn't work and the attendant wasn't answering. Fantastic.. so we wasted about 10 min doing all that.. not too much time, but we were already behind schedule and we still had to get gas. We drove 2 exits and stopped again and got gas, thankfully there was no line, but by this time it's 8 and I'm starting to freak out. If we don't make this appointment we won't be able to keep the third one. Sometimes it takes silly things like this to remind me that God knows what he's doing. His timing is always best. If I had left at 7:30 like I had intended, and all else had gone as I had planned, likely I would have been stuck in traffic for the hour difference. Instead we had hardly any traffic, and the traffic that was there moved well. We made it in just under 20 min.

It's an odd feeling to walk into the clinic. It's really nice that the critical eyes and stares are gone. Sometimes I feel as though I live on an island. It's nice to find other life in this crazy place! One boy in the waiting room was playing with "Bumblee" the Transformer.. pushing the same button over and over. No one cared.. we all knew that even if someone said to stop it wouldn't help, so just absorb the noise and get over it. The therapist called him back and he wanted to take the toy with him, but his mom wouldn't let him. You could tell it was going to start a melt down, but the therapist got him distracted before it started. Then she said "He can bring it. It's okay with me." to which his mom replied, "No, it's not ours, it's this lady's. She saved my life this morning!". What a relief it is to have someone offer help instead of advice sometimes!

We got called back for Kaitlyn's appointment and I was a bit worried about what would happen when we got into the room. The night before we had about 20 min of screaming and yelling and hitting when she saw the "doctor" icon go up on the schedule. She kept saying "No, mommy doctor". I finally gave up trying to tell her that it was her doctor. I got her in the car with the promise of doughnuts and a movie! Things like that make me feel like a bad mother sometimes, but I have learned that what other people thing is not right is allowed if it works! The view I had of what I was going to be like as a mother has TOTALLY changed.. and I'm okay with that now. :)
Anyhow... She was a bit upset to go into an exam room, but there were toys so it was better. We put Curious George (she brought a stuffed monkey with her) on the table so he could take a nap.. he was tired, which means that Kaitlyn was tired too.. she projects onto her toys what she is feeling. I'm glad I can at least get some idea of how she's feeling! Anyhow, George took a nap and Kaitlyn went to play with some toys. She found a "Lightning McQueen" in the box and sat down on the floor to play with him. --Just an idea of what she does to "play".. a typical kid, Andrea or Christopher, would make car noises and "drive" the car around the room. Kaitlyn just sat in the center of the room with the car and spun in circles.-- A nurse came in to ask all the typical, and some not so typical, medical history questions. We talked to her for about 20 minutes and then the psychologist and the behavioral pediatrician came in. From the time they came in until almost 10:45 it was one question after another about Kait's history and behavior. At 10:30 or so Phil and Kaitlyn went to a different room for play evaluation and speech evaluation. They were gone for almost an hour. I asked him what went on, because I need to know everything of course! I did NOT like not going with her to that, but it helped to have them go while I finished up the psychologist time. He said while they were in there they asked her to play with a doll. She had to be prompted to feed the baby and help it drink and then put it to sleep. She did what they asked her to do, but she did none of it voluntarily. They asked what makes her happy/sad/scared and she couldn't answer appropriately. Then they read a story and tried to act it out. She did "okay" with the first one and then when they tried to do another she reverted back to the first story. Then they wanted to find things in pictures. She found most of the big/little things, but couldn't find boy/girl. They categorized things and she couldn't do in/on top of. All these things I know, and I see on a regular basis, but to see it done in an evaluation type of setting makes the realization that it's not typical even more striking. After everything was done we waited for the psychologist to come back in and let us know where they stand with Kaitlyn. The first thing she said was "Well, Kaitlyn is quite a puzzle." On one side that is encouraging that I'm not the only one confused by her, but at the same point it means that the road ahead is likely going to be very bumpy. At this point she has been prescribed more speech therapy. She is getting it once a week at school, but they want us to see a private therapist once a week as well.

Well, this week we have the behavior side of the evaluation. It's on Wednesady.. it will be after school so I know Kaitlyn will be tired, which is kind of a good thing I guess. Bad days are good for evaluations. She will spend about 3 hours with the psychologist alone- I'll be in the room, but not able to participate at all- and the psychologist will evaluate her based on how she plays and interacts etc. Basically more in depth of what we've already done. I'm glad to be finally in a place where we are starting to get some answers. Our goal above anything is to move her forward as far as she can go. I don't care how far that is, as long as it's her best!!
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