The kids are getting excited that Halloween is coming up. Those of you that know Bill know how "all out" he goes for this. For the past 2 weeks they have been working on some new decorations to add to the outside display. Yesterday he and Timmy got out all the yard decorations. They got a few things up but then the rain today put a halt to finishing it. Instead they moved inside and worked on the "halloween village" & window/foyer displays. Hopefully the weather will cooperate tomorrow morning because Bill wanted to get it most of it up before he leaves for Washington in the afternoon. He'll be gone all week. Lauren, who is right now down at Aunt Eileen's for a spur of the moment sleepover, just called to tell us that she picked out a costume. She was all excited as she described her Barbie as Swan Lake outfit complete with tiara and magic wand. I told her it sounds beautiful, I can't wait to see it and she said "well actually mom I'm wearing it right now!"
Believe it or not scan time is upon us again. Lauren and I wil be heading into the city the week before Halloween. She's a little upset that she has to miss school but she said she's also looking forward to seeing some friends at RMH. We'll be staying an extra day this time and coming home on Friday. Not due to any tests but because Bill can't come pick us up on Thursday night like usual because Timmy has a karate seminar that night. Bill and I talked about it and decided that since he just got back into karate after 2 months of not being able to do it we didn't want him to have to miss it.
Now, I had mentioned in my last update a neuropsych evaluation and a child study team meeting. I didn't go into any detail because the update was long winded enough already but I had a number of questions about it so i thought I should explain a bit more.
Lauren had a neuropsych evaluation over the summer as part of her long term followup. This is a 3-4 hour test that looks for issues that might impact learning/school. I already knew she had a issue with attention but didn't really think they'd find much else. Well the psychologist called me at the end of August to go over the results with me. She did find some ares of concern. There is a big discrepancy between Lauren's verbal IQ and performance IQ. She said this is commonly seen in the pediatric cancer population but Lauren actually has one of the largest variances she has seen. (She scored in the 97% for verbal & 21% for performance) She definitely sees weakness in fine motor areas, as well as attention, focus/concentration, timed task ability and organization skills. Again, not uncomon for pediatric cancer survivors. She said without intervention these issues may negatively impact Lauren's school attitudes, performance and self confidence as well as prevent her from working up to her academic potential. Unfortunately these things won't just get better or go away but if caught early she can be taught to compensate. She gave some recommendations for modifications in the classroom and also thought she should have OT (occupational therapy). Or at least an eval by an occ therapist familiar with cancer survivors
As for the child study team meeting. Back in May I had started the process to have Lauren classified for school. I thought she could continue her PT through the school and Karen (her PT therapist) had suggested she get OT to help with the sensory integration issues that she had been working on with Lauren for the past 2 years. I did not want her sensory issues to be labled as behavioral problems. As part of the classification process Lauren had to have speech/OT & PT evaluations done by the school. We met at the end of the summer to go over everything.
Well there was no problem with her being eligible to be classified, all I really needed for that was a letter from one of her doctors stating the list of late effects she needed to be monitored for (esp. cognitive issues). So she is classified Special Ed under "Other Health Impaired (OHI)". And they had no problem putting things in her IEP things like - allow rest time if needed, allow extra time for recall, different seating if needed, allow more time for tasks etc - they say she doesn't need OT or PT. According to their evals she is age appropriate or has "functional" ability. Basically she can get from point A to point B and they don't care how she gets there. As far as the PT- at this point it doesn't "educationally impact her". I told them I was willing to monitor that one because we have her in dance and gymnastics on the rec. of her old therapist. And I would see how her next ortho visit went. I was more concerned with the OT as I had two professionals (and countless other people) saying she needed it and only one eval (the school's) saying she didn't.
Well to make a long story short, after 2 more meetings, talking with a special education specialist at the State Dept of Ed, physical therapist, a special ed teacher, Lauren's kindergarten teacher and spending hours on the internet researching sensory integration dysfunction this is what we came up with: Lauren's problem may not be with fine motor per se (fine motor ability is functional) but an input/output (processing) issue. One of her main "sensory" issues is that she needs more input/stimuation than a normal child to achieve the same response. Her classroom is very sensory stimulating (sand table, playdough, painting, dressup etc.) so things they would do in ot are already there. Her teacher (who has a special ed backround) assured me that Lauren is doing really well and at this point sees no problems. She then suggested that we can address some extra ot issues in the classromm instead of pulling her out. So we added to her IEP - OT quarterly consultation & evaluation in the classroom and the therapist will give the teacher things to do during class and we'll see how things go. I will probably still do an independent eval with an occupational therapist who is familiar with and specially trained in sensory integration dysfunction that way if something comes up later on I already have it "professionally diagnosed" and in her file.
I can't tell you how consuming & emotionally draining all of this was for me. I so wanted to be "done" with fighting, defending what I think is right for Lauren, being "tough" etc. I thought that the fight & struggle was supposed to have ended this past January when we "finished" treatment. When so many people said - you must be so glad it's over, put this all behind you, forget about it and go back to normal. Normal?? define normal. Over? it's never really over - don't get me wrong I'm greatful for where we are right now but I can't just close my eyes to the price we paid to get here. Truth is I've had a lot of ups and downs over the last 8 months. Anyone who knows me will admit that I don't often let down my guard.or show my true feelings. I often hear - you're so strong, you can handle anything, you're like a rock. Well three years of treatment and being strong has worn me down and yes I do realize that I am now finally going through all the emotions that I pushed aside to deal with Lauren's treatment - when i had to be strong. To borrow a quote from a good friend "it's emotional jetlag" (thanks Nadine) and it's finally caught up with me. I read a poem recently that I really identified with called The Strength of an Egg. maybe some of you know it....
The Strength of an Egg By Juliet Freitag
Parents of children with cancer, or really any serious condition, are
often referred to or viewed as having strength "like a rock." Albiet
flattering,it isn't quite true. It is more like the strength of an egg.
An egg, you ask?
Yes!
If you'll think about it, you'll see my point.
An egg has a polished, smooth outer appearance, with no cracks or
weak spots visible. It seems almost inconceivable that the inside might not
be so smooth or solid.
Most children, at some point are shown the famous egg trick. An egg
set at just the right angle can withstand enormous amounts of pressure and
cannot be cracked or broken. Yet the same egg, tapped gently at an ever
slightly different angle, will break. The contents, once so neatly
concealed, will come spilling out. The no longer perfect shell will be crushed. It
looks so fragile that it seems inconceivable that it ever held any strength.
A rock, on the other hand, is solid all the way through. To break it
is almost impossible. If you succeed, you will find that there is nothing
inside but more rock.
It takes a lot more than pure hardness to hold the hand of hope.
Parents of children with cancer are not solid all the way through. We hurt,
we fear, we cry, we hope. It takes a very careful balancing act to keep the
shell from being shattered. "Balancing an egg" while running a household, going
for doctors' visits and hospital stays, keeping the family together, and
holding on to the constantly unraveling ties of your sanity can be very
tricky indeed!
Occasionally, the angle will be off and the shell will break, shattering
hope and all the neatly secured appearances of a truly fragile existence.
Unlike Humpty Dumpty, though, parents of kids with cancer will pick
themselves up and put themselves back together again.
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And on that note this Humpty Dumpty is going to bed as all of this "thinking" has given me a headache. As Bill often says "sometimes you think too much!' LOL Ah well sometimes ya just need to vent :-)
As always thanks for checking in on us, for the continued thoughts and prayers and for just "being" there. It really means a lot to us!
