Ok, so that last post with today’s date was not really written today…didn’t think so, huh? It was actually from more than a week ago but I had not finished it and since I wanted to write about things that have happened since, I decided to publish it anyway. So, here is the latest on the Kennedy front…
Kennedy did have her eye appointment and it went so much better than I had anticipated! She didn’t cry or pitch a fit, despite the fact that I knew she was very uncomfortable and very anxious. She answered most questions clearly, the ones she understood at least, and I helped with the rest by rephrasing for her in a way that she could quickly understand what was being asked. And the best news? Her eyes are doing just fine and look normal. Now, I know that the problems we are looking for won’t even show up until we are at least 5 years post treatment (peak period being 10 years post treatment) but I am going to rejoice in the good news where I can get it.
Kennedy also had her occupational therapy and language therapy evaluations since my last post. Hmm…what to say here…frustrated perhaps? I don’t have the official reports as of today, but the preliminary discussion was that Kennedy has tremendous strengths that put her way ahead of other kids her age. Good, huh? They also said, however, that Kennedy has enormous holes that put her way behind other kids her age…sometimes in the 3 to 4 year old range. Ugh! How in the world am I supposed to take that? Kennedy has ginormous issues with auditory processing…her ability to understand what she hears…what does this look like for her? Well, I’ll list the symptoms she has according to information from an audiology website: often seems to ignore people, is less attentive/productive in busy surroundings, difficulty following a series of spoken directions (she can often repeat what you have said but will complete less than half of what she was told), unusually forgetful of information previously memorized or of routines despite frequent reminders, difficulty with phonics approach to reading, confuses similar sounding words, needs to (or should) ask many questions to clarify task before starting; “doesn’t get the picture,” interprets words too literally, becoming confused or suffering hurt feelings, speaks “telegraphically”-omits facts or switches topic, so that audience cannot follow train of thought, one thing we notice in particular is that Kennedy will suddenly comment on a conversation that happened 1/2 hour ago as if it is still the topic. (symptoms taken from www.judithpaton.com/checklist.html) For another example, we have been working on phonics/letter sounds for more than a year and she still has a lot of trouble distinguishing between many of them. This is just one issue we are working on…she also has weakness in her fingers making it hard to write without using her wrist and forearm, decreased stamina when doing activities such as eating with utensils, brusing her teeth, tying her shoes and writing. Extreme difficulty performing activites bilaterally…using both hands at the same time whether doing exactly the same task or two different tasks. Problems with coordination, fine motor skills, yada yada yada…it just becomes a conversation I get sick of having.
Sure, we see the issues here at home. Every day, but we have developed ways to assist her, compensate her, help her…whatever…so things just don’t seem as bad. It isn’t until we are out in the world that her deficancies become obvious. And yet…there are people everywhere who think we are making a big deal out of nothing…after a few minutes with Kennedy, they will say, “there’s nothing wrong with her! She’s fine!” Ok, whatever. Yes, she is fine. She has so many outstanding qualities and amazing strengths that it can appear that things are going along great but if they spent time with her, they would see her shortcomings…and some are not so short. Ok, so I am venting here. Sometimes I just have to do that. Oh, and the bad thing about people thinking she is just fine is when she does finally show an area where she is weak or struggling, they act as if she is either dumb or just plain weird. Ugh! Now, how is that helpful???? Even those close to her sometimes don’t stop and remember that some things are VERY DIFFICULT for her. Things that should be easy for any other 7 year old can cause her to just shut down completely. Heck, even I can get frustrated but it is certainly not her fault. Ok, I am venting, but sometimes I just want to shake the hell out of people and tell them to KNOCK IT OFF AND CUT HER SOME SLACK! There, I said it. Not sure that I feel better though. The neuropsychologist told us in 2006 that it would be necessary for us to be the bridge between Kennedy and the world…an interpreter so to speak, or advocate…that becomes more obvious all the time. Now, before you all think that Kennedy is not doing well, she is…she just has areas that are a real struggle for her…they’re just not screaming “look at me, look at me!” and because of her strengths, there are times when she can mask them pretty well. Just please be patient when she can’t.
Ok, off that one for now…I’m sure I’ll have more when the final reports come in. The only good thing about having a therapist write this depressing report is that I know I am not making it up and going cuckoo! She has started OT again (Joannie had an opening right away) and will be starting SLT this Friday with Julianne. We are still waiting to get in with Amy for PT but hoping that will be soon as we are also having issues there.
Oh, and she has a clinic appointment on Thursday.
Well, she is doing just fantastic with her new tutor, Mrs. Darling. She raves and raves about how much fun she has and I am excited that Mrs. Darling understands Kennedy and is willing to work with us on getting Kennedy going in the right direction. Her creativity inspires me (as does her organization) and gives me hope after feeling like I’m hitting a brick wall with reading. She also told us about classes offered to homeschoolers and Kennedy is taking a fun science class along with a music class and choir. Kennedy absolutely LOVES music and it seems to help with recall for her. We did not look for anything academic as frustrating Kennedy will not help and truly we just wanted a supplement to what we are doing at home. She is doing well in math and loves history and science. Her handwriting is also improving but again, much repetition is needed in forming letters correctly. I absolutely believe that this will come with more repetition as that seems to be how most things work for her. The radiation oncologists told us that everything Kennedy learned prior to radiation she would retain but anything new she had to learn (she was barely 5 at the time) would take lots and lots and lots of repeating along with a multi-sensory approach to be remembered and understood. He wasn’t kidding 🙂
She loves her classes so far but had a little scare last Wednesday. Now, Kennedy has NEVER attended school…not even preschool and has very little (less than 2 weeks) worth of day care experience so this is a very new concept for her. On Wednesday, Mrs. Darling takes her to choir which Kennedy is signed up for with her daughter, Tink, who is older. Kennedy was very confused (despite us all telling her and reassuring her for some time) and thought that Tink would not be staying with her. Panic was the result. She had to literally be touching Tink (according to Kennedy) and would not participate until about 45 minutes in to class. Mrs. Darling and Tink are so wonderful and reassured Kennedy that Tink would never leave her during choir (if Kennedy had to go to the bathroom, for instance, Tink would be with her) and now she is feeling okay about the idea. For science and music both Austin and I are with her so she is fine but she wasn’t sure how to ask Tink or Mrs. Darling what she should do if they were separated or if that was going to happen (again, here goes the auditory processing issue) and began to panic and was unable to properly express herself. Everything seems to be okay now and we will again reassure her as she has expressed that she wants to attend choir, especially because she adores Tink very much.
Let’s see, we also got together with Kennedy’s chemo pal, Adonna, and went bowling and had ice cream. It was so much fun and even better that we were pretty much the only ones in the bowling alley as I took a very ungraceful tumble when I went too far on the lane and slipped! Not my best moment 🙂 The kids had a blast though but were definitely tired when all was said and done (Austin has classes on Thursdays at the same school).
Let’s see…we also had the horse runaway this weekend…you can find that at my other blog here and if you want to keep up to date on Austin’s rodeo stuff you can find that here and if you just want to know what’s going on in our lives as far as homeschooling…you can find that here. Yes, I know, I have a hard enough time keeping up with the blog…what on earth am I doing with 3 more? Well, sometimes I like to write about stuff other than Kennedy and cancer…hard to believe I know that I have other things going on in my life 🙂
Love you guys…all of you!
Mel
