L’s IEP meeting happened today. It was a fairly unpleasant experience, which was greatly amplified by cramming 7 people into a small, unairconditioned room. I think they were trying to sweat an agreement out of us.
Long story still pretty long (I need to vent this, I know it isn’t fascinating reading to anyone but me):
We walked in and immediately put a digital recorder on the table, thus siliently announcing to everyone that We Are Not Fucking Around Here. We Are Not Opposed To Legal Action. Prepare For A Fight. (This made me nervous, but I think it was vital to the outcome later.)
We spent over a hour talking about all of L’s issues in great detail. They provided test results we found questionable. We provided competing independent test results which they tried to disregard.
Then, the psychologist in charge tried to get us to agree that L did not meet any IEP disability category. After we had talked about her attention issues for an HOUR. She tried to get other school representatives to agree with her, then rolled her eyes when it became clear that L’s preschool teacher did not agree.
This is when I started to get mad. She tried to explain that L didn’t qualify and then I read from the legal definition of Other Health Impaired (brought from home). Specifically, I focused on this section, though I did read the entire section so we were all clear.
“Having limited strength, vitality, or alertness, including a heightened alertness to environmental stimuli, that results in limited alertness with respect to the educational environment, that is due to chronic or acute health problems…”
L has no formal diagnosis, but she is extremely sensitive to and distracted by environmental stimuli which severely impacts her ability to focus and pay attention.
This lady pushed and pushed for a 504 and against any OT, but eventually, we wore her down by referring over and over to all the documentation of attention issues. L’s preschool teacher, the Special Ed Specialist and even the OT (who hadn’t actually done L’s eval) ended up siding with us. And yet that woman continued to argue.
Adding to the pleasantness of this adventure is the fact that L’s IEP expires TOMORROW. So to be in compliance with the law, they have to write one for her tonight if she was found to have a disability category.
The more that lady dug in, the more I asked for stuff. I requested additional testing (by the school) and then an Independent Educational Evaluation to resolve the widely varying test results (this is the neuropsych exam) which the school will have to finance. They had to give it to us because it is either provide it or go to due process (which will cost the a ton of money in legal fees). If she had just given L the disability designation she is legally entitled to in the first place, it would have saved the school thousands of dollars. (We had already scheduled the Neuropsych exam and would have paid for it ourselves.) We also made it very clear we were not agreeing to anything that did not involve a disability designation.
The psych lady finally gave in once we all pretty much agreed that a less than 15 minute attention span will damage L’s employability (um, guys, she is SIX). Then the OT flipped out about the IEP needing to be done by tomorrow. There was a big flurry of drama and angst by the school people as they tried to scramble over what they should do. (I learned later this drama was exacerbated by the Psychologist telling the staff they didn’t have to prepare any possible goals because we weren’t getting an IEP…so much for no predetermination!)
Mr. A and I just waited for them to get over themselves. Right now, one poor teacher is writing an IEP late into the night which will cover through the end of the first month of school. This will give us time to complete new testing before we reconvene to go over the annual and measurable goals for next year.
Overall, it wasn’t a slam dunk, but we did manage to get a disability designation and a (to be created) IEP which will hold the school responsible for monitoring L’s improvement. That designation will last for three years (!) so we won’t have to struggle through this portion of the IEP process for a while. We will be doing a bunch more testing and I don’t know what we will find, so I cannot predict what goals we will eventually put in the IEP.
In conclusion, we won this battle, but it wasn’t fun. When we left the meeting, I felt victorious because we managed to get an IEP of some sort. I also felt like I wanted to cry or throw up because it was clear that psychologist did not care about what L needed to be successful and to change her brain so she can have a lifetime of fewer struggles. In my opinion, this very short-sighted of the school because without the right intervention, L is going to continue to require services and we will make sure the school provides them.
At one point, the psychologist said “It is really too bad you have to start out at this school under such adversarial circumstances” (or something along those lines). I have to say, I don’t feel sorry. If they hadn’t made it so clear they don’t understand L’s challenges, we might have accepted the watered down “help” they offered.
Now we know. We won’t trust them to figure out what L needs, we will figure it out ourselves and hold them to their legal responsibilities. As I was telling someone else today, we did not bring this child to our family to let her fall through the cracks. A kid like L needs parents who will get her what she needs. We will be those advocates for her. We will fight each battle even if the war can’t ever really be won.
This week has been a flurry of research (and waiting on hold trying to schedule appointments) to figure out what is going on with L. We are scheduled to meet with a neuropsych later this week. Hopefully he will help us figure out what additional testing we need.
In the meantime, we got an OT evaluation back which says that L has sensory issues, which we knew already. The OT has suggested some therapeutic listening to help with some possible auditory and known vestibular problems. Anyone have experience with Therapeutic Listening? The research I found looks like it has a decent chance of doing *something*, so I ordered the $150 headphones and we will begin when they get here.
We also just got back from a vision test (not to be confused with a normal eye exam), which L did not pass. L had vision therapy in the past and it looks like she is going to be doing it again this summer. She clearly has some visual perception problems, though other vision skills like visual motor and visual memory seem to be normal.
It sounds crazy, but I was pretty happy she scored low on the visual perception tests, because it explains why she did very *very* poorly on some sections of the other testing the school had her do. The last time she did vision therapy, L made dramatic improvements in a short period of time, so I am hopeful that will happen again, because vision therapy is hella expensive. I think we are going to request OT for visual perception from the school in addition to the OT they have previously provided for sensory seeking issues.
Last week, I was very worried and upset, but this week I have a plan of action. Our IEP meeting is next monday, so we will see how that goes.
L is such a trooper. She is a bright and funny little kid and she has to deal with the annoyingness of having a quirky brain. And now she will have to deal with parents who are 100% dedicated to therapizing the crap out of her until we know that we have smoothed out as many of her brain’s rough edges as we can.
We are knee deep (soon to be neck deep) in L’s IEP /transition to kindergarten process. It sucks. It royally sucks.
I spent my morning crying about one of her stupid test results even though I know that it is totally no indicative of L’s abilities. The crappy score she got on that one test actually just means we need to figure out what exactly on that test is making her struggle, so we can work on that area. It makes me upset, though, because I thought we were nearly out of the woods with her learning issues. I was wrong.
This kid is a puzzle. She has scattered skill deficits: above average scores on some areas and totally failing others on the same freaking tests (testing related skills). It makes me want to pound my head into a wall. And surprisingly, her academic skills are all above average for her age despite scoring below average on a bunch of other tests.
Right now, I am puzzling over how to interpret her language testing scores. They are by far not the most worrisome test, but if she has language issues it could be affecting her ability to do well on other tests.
Is there any chance that any of my readers are speech language pathologists with experience with the TOLD test? I am not sure I trust the school’s conclusion that there is no issue based on these results. I would love a second opinion.
I would also really appreciate any suggestions about places I can get information about formally requesting an Independent Educational Evaluation as part of the IEP process, given the weird results we are getting from the school’s tests.
To be clear, I think the results are probably accurate, but the school and I differ as to what these weird discrepancies indicate. It appears they are gearing up to say there is no problem and I think there is a problem.
Holy crap, I looked through the questions I have left to answer and I may be answering questions until groundhog day. Please bear with me as I try to knock some of these out!
Kate from the Industrious Eye asks:
I’d like to hear more about your experience with vision therapy for L. Did you feel it helped her, and if so, what differences do you see? I have a problem that I could pass on to my kids that is sometimes treated with vision therapy. But it’s a controversial subject. Because it wasn’t how I was treated, I don’t have much insight.
When L was about 3.5, I figured out that she was having some issues with her vision based on some basic developmental tests performed by her preschool. Before that, I knew something was wrong, but I couldn’t figure out what it was. After a lot of therapy and research, we figured out that L had the following issues: a visual processing disorder which included tracking/pursuit problem and a significant delay in her visual motor skills; a problem with her visual-ocular reflex (vision and balance), midline issues and sensory integration issues. Let’s just focus on the vision stuff for a the time being.
We can’t be sure why L had these issues, but there is a strong possibility that it was because she missed being held, rocked and moved around when she was very young (around or before 3 months old) and living in the orphanage. We can all take a minute to think about how sad that is, but the reality is, L is fine and these issues were identified and treatable unlike many other issues common with institutionalization and neglect.
While I am generally very anti-”lucky baby”, I will say in one way L was very fortunate that she ended up with our family because her presentation of issues is extremely atypical and medical professionals kept telling us there was nothing wrong. Because L could do skills she should not be able to do (ride a bike, use chopsticks) because she lacked foundation vision and vestibular/balance skills, it took a lot of research and persistence for me to figure them out and find the right people to work them out. My gut told me something was off with L and eventually I found out I was right. Had I listened to the first professionals, L would have suffered needlessly for years and had educational deficits from delayed treatment.*
In case you are curious, some issues that raised red flags (or were indicative of problems once we figured out what we were dealing with): L would only be in an upright or completely flat plane–she hated anything that required reclining, her drawing and coloring was horrendous compared to same age kids, she would draw on the right side of the paper with her right hand and the left side with her left, she was very physical but in a tightly controlled way–she never jumped from a high or spun around but liked having other people spin her, she would not pay attention to books at all–not even for 20 seconds (probably because she couldn’t make sense of the pictures), she could not learn phonics at all despite six months of trying, she could not play memory or figure out matching pictures even if the cards were face up, she was clueless about the shape sorter, yada yada yada. All stuff that seemed kind of OK, but when you know what you are looking for, these are giant flashing signs of visual processing and vestibular issues.
For the visual processing stuff, L did three blocks of seven sessions of vision therapy under the supervision of a developmental optomotrist when she was just over 4 years old. If you read the comments here, you will see that vision therapy has a lot of controversy around it, but it was absolutely life changing for L. It is kind of hard to remember how significant the changes were, but I made a post here after she had done vision therapy for about 6 weeks. Here is a post when she graduated from Vision Therapy.
L isn’t the same kid she was before vision therapy. She is academically right on target, though she still struggles a little with paying attention and sitting still (which is likely due to her sensory issues–which are another post entirely). Within 6 weeks of starting vision therapy, something clicked and she got phonics. Despite the fact that I had been trying to teach her phonics for 6 months before that, she got all the letters all at the same time — in about three days. Over time, her visual fine motor skills and visual memory have improved dramatically. She loves to listen to stories now and spends hours looking at pictures books. L started jumping off furniture and spinning herself around which I suspect she had never done because her vision and balance were so wonky. We also did occupational therapy to work on the vestibular-ocular and midline issues too, but the biggest changes happened in Vision Therapy (though I suspect she could use a bit more OT because she still won’t recline in a bean bag).
Controversy or no, I am a vision therapy convert. Answering this questions is very fortuitously timed. Just today, I read Fixing My Gaze which is from the point of view of an adult neurobiologist who had great success with vision therapy (also, it was fascinating!).
We spent about $2,000 on vision therapy, none of which was covered by our insurance, but I feel it was money well-spent. I also believe we spent much less because we chose to have L treated while she was so young and her brain was so plastic. I know it is only speculation, but I feel very sure that L would have had a horrible time trying to learn to read and may have been diagnosed as learning disabled had she not had vision therapy. She may never be a completely typical student, but I know her vision is not causing problems.
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*I know this is a long post, but I am writing more than I would otherwise because I suspect many post-institutionalized kids have similar atypical presentation of these issues and someone might recognize their kid in this.
Tonight M told me that a boy and a girl in her class are “dating”. She said it somewhat ironically with air quotes, but seriously, 8 year olds are “dating”? Oh man.
Also, I gleaned that piece of information on a walk to the library. Score one for asking vague questions when the kid doesn’t have to look you in the eyes.
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A couple more quick questions from S’s Mom:
Why is this considered an adoption blog? How the heck did that happen? (I do not read it for adoption insight.)
I would guess it is an “adoption blog” because the majority of my readers are adoptive parents. I know that adoption-related posts (particularly those about L’s family) are by far the ones that people look for the most. My stats go WAY up on those posts. They used to go up like that when I wrote about my MIL, but since I don’t see her so much lately, I guess I can’t qualify this as a “people who have the craziest extended families” blog. heh. I also used to write more about race stuff, but right now it isn’t at the top of my consciousness so I haven’t had much to say about it.
If I do keep blogging, expect this blog to morph into a “building my forever house” blog, which will pretty much guarantee a quick exodus of my previously loyal adoptive parent readers. For me, I am mostly just blogging my life, so I don’t really care what categorization internet people want to put me in.
Do people say things like “Oh, multiracial kids are the cutest”. “What a China doll”. Etc. How do you explain to M and L their differences in looks, etc.
We got some comments about M’s looks/mixed-racedness when she was small, but now we hardly get any. M mostly passes for white unless people are familiar with hapa kids, then they can see it. But then again, no one comments when she is out with Mr. A either. Maybe she does look a little Asian. I pretty much never get comments about L not matching me or M either. I have had a handful of weird comments about L, but probably less than 10 in the past 4.5 years.
Most of the time, I forget that we don’t match. Don’t get me wrong, that doesn’t mean I forget that she is Asian, it just seems very normal for me to be with an Asian kid or a hapa kid or an Asian husband for that matter.
Actually, now that I think about it, the vast majority of mentions about our not matching happened when we were traveling in China, Hong Kong and Taiwan last year. At least twice a day, someone would say “Oh, the little one looks like your husband. The big one looks like you!” I imagine that might be what people who don’t know L is adopted might be thinking here? I don’t know because they don’t say anything.
As for how I talk to the kids about it, M is very practical and concrete. She has a good understanding of ancestry and knows she is half Chinese/Taiwanese and half European. She knows she looks more white than Chinese because it was commented on so frequently on our trip, but I don’t remember her ever mentioning it before.
She also has internalized the idea that hapa=extra pretty. This makes my roll my eyes, but I guess she has good self esteem or something. I think she got that idea from my misguided attempts to prepare her for so much attention in China. When she was 4 (on our adoption trip) people made a huge deal about her cuteness and hapaness. This time, less so (probably because her teeth were so jacked up and because L was much smaller and cuter).
L doesn’t really get the idea of race yet. She knows she looks Chinese. She thinks that means black hair and brown skin. She knows what parts of her look like each of her birthparents and how she looks like her bio-siblings. She knows that Mr. A also looks Chinese because his parents came from Taiwan (which is Chinese).
I don’t know, I guess I am just a straight -shooter with these kinds of issues. I just lay out the facts (ancestry, genes, etc.) and tell them that some people are racist and why (historical stories, creating an in group and and out group, etc.). It seems to be working ok as far as I can tell. Also, I don’t think we are really at the key ages for race issues to bubble up yet. I anticipate problems in Jr. High and High School, but that is a whole other post.
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