Monday, November 17, 2008

Highs and Lows, or rather Lows and Mediums

This is a bit incoherent, but so are my thoughts right now.

From this morning:

I've just spent the past hour reading Maya's sensory evaluation (short version - her issues most likely do not stem from sensory processing difficulties, but may very well be a sensory integration issue, in any case the cause is most likely emotional/psychological, not neurological).

However, and this is a big however, the report is full of factual errors and flaws that I will have to have corrected. I'm upset and angry too, because most of the errors make Jay and I out to be utter morons, and if the O/T heard things this way then she obviously thinks we're capable of it. Not to mention that these factual mistakes cloud the ultimate evaluation. Things like "Maya is neophobic. She is very limited in what she is willing to eat.... Maya insists on a set number of bottles of chocolate milk before bed."


First off, Maya no longer gets bottles.

Second, I have never in my entire life put anything other than breast milk or later cow's milk in a bottle, certainly not chocolate milk.

Third, she only gets about 1/2 a very small glass of chocolate milk in the morning, and none at all in the evening.

Fourth, even when she was still getting her "two bottle of milks" (milk! plain milk!) before bed, each one only contained about half an ounce! Yes, she had two because it was her comfort item and very important to her and the psychologist felt we shouldn't try to take them away until she was ready, but it's not like she was guzzling down gallons of milk - she hasn't done that in over three years! I'm not an idiot - obviously she wouldn't be interested in eating a lot if she were being given huge quantities of sugary chocolate milk, which is how the report makes it sound.

The report also goes on and on about "cognitive difficulties". Maya has been through a huge amount of testing over the past two years, and the one thing all the professionals have agreed on is that her difficulties are NOT cognitive!!! Yes, she has a lot of challenges and no, it's not been an easy path, but the one consistent encouragement we've gotten is that Maya has extremely high cognitive abilities which will be a tremendous help to her as she works to overcome these challenges. The overall O/T report was also a lot more negative about her future compared to all the other professional evaluations (psych, speech, Child Dev Agency, etc.) that have been carried out.

Obviously I will insist on having the report corrected and the findings reevaluated accordingly, but I'm so angry and frustrated and am definitely calling the skills of the O/T into serious question. I feel like we've contributed a great deal to this effort, both in terms of time and money, and we got back crap in return. Oh, and the icing on the rotten cake of my morning?An hour from now I have to go meet with Maya's preschool teacher to receive her official IEP (personal plan) for this year. It will hopefully be pragmatic and not have any major surprises, but still. It will, yet again, lay all of her "deficiencies" and "problems" right out there in black and white. Again.

This is not shaping up to be a good day so far...

Then from this afternoon:

All the other reports we've received over the years have been much more accurate, including the IEP I just got from her teacher - this one was spot on. It identified all the same strengths and areas needing work that we have, set appropriate goals and targets, and is utilizing appropriate means to work towards them...

The O/T report is just simply a piece of crap put together by a woman who is either unforgivably sloppy or else utterly incompetant. I spoke to a (geriatric) OT friend of mine a few minutes ago who strongly suspects that this woman is not qualified to carry out this evaluation and bets that she is not certified for it, since apparently very few O/T's in Israel are. (Money-grubbing much?) For the cognitive problems, she suspects that she has mixed up (!!!) "cognition" with (sensory) "perception", which is an area where Maya does struggle. She (Maya) certainly does NOT struggle with cognition, a fact which was just confirmed AGAIN in black and white in the school report, and by the teacher's discussion of providing her with advanced work in various areas to best meet her capabilities.

At least the school meeting went well and left me feeling positive and empowered again. I knew all along that Maya was in the right place getting the right supports, and this just emphasized that I was right.

Now to go take something for this headache and then to pick up my gorgeous and very unique daughter.


Janet said...

Man, I'm sorry you had to go through this...wth!!!

Libby's Library said...

I'ts infuriating to have some "stranger" (especially inaccuratly) reduce your childs life, with the stroke of a pen. And when they insist on pointing fingers of blame at the parents...
...I see RED!

We adopted our youngest child from the State of Florida. He had been in medical foster care all his life. Amazingly, he had been treated by some of the very best doctors.
My son had been wearing hearing aides for years. When we moved to another state, we put Joey into public school (we had previously homeschooled and then used small private schools), so we had to go through all the meetings and testing again - in order to get an up to date IEP.
One day I got a phone call from the school. A "speech teacher" (she called herself) had just tested Joey's hearing. She informed me that:

1.There was nothing wrong with his hearing.
2.That she thought that we had been scammed into buying hearing aides for out son.
3.We were being abusive by making our son wear his hearing aids.
4.She had informed my son of her results.

After assuring this woman that my son, did in fact, have a fluctuating conductive hearing loss, and that he had been treated by Pediatric Audiologists from All Childrens Hospital - I asked her to please tell my son that she had made an error. She refused!
My son came home from school that afternoon and excitedly told me that his hearing had been cured, and that he no longer needed to wear his hearing aids. No matter how much I talked and explained the situation to him - he would not use them again.
After consulting with his audiologist back in Florida - I contacted Joey's IEP co-ordinator, who then contacted the principle about the matter. I got an email from the principle asking me who tested my son. (WHOA - are you telling me that there are no records of who comes in and tests students at her school. Or is she just too lazy to find this out on her own?) I wrote back to her and gave her all the info that I had. I told her that I didn't want to cause problems - I just wanted an "authority figure" from the school to tell my son that a mistake was made! I also wanted to make sure that this "speech teacher" stopped practicing audiology without a license. Do you think that I ever got a response? Nope - not a word.
Five months later at the final "group" meeting to finish up his IEP(we had to wait during the summer and then complete it at the H.S. as he was promoted from the 8th to the 9th grade) I asked about the "hearing test situation". A school board official looks at me and says "Oh - no one called you about that?" I said "NO." She then informed me that the "speech teacher" is no longer with the school board. No apoligies. Nothing else - Zip - Nada.
I was furious, to say the least.
Now a year and a half after the original testing, a school board audiologist has finally seen our son. She assured my son and I, that he still has a hearing loss, that he does indeed, need to wear his hearing aides. Too little too late. The damage has been done. I can't force my 16 year old to put those hearing aides back in. He just won't do it. His schoolwork suffers because of it! -All because this "speech teacher" was too lazy to do her homework, or too stupid, or just didn't care.

I feel your pain!

PS - At the above mentioned IEP meeting. My husband and I found NUMEROUS mistakes in the evalutations of the testing results. I believe in parents being active in their childrens academic lives BUT we shouldn't have to been doing other peoples work for them!

Thank you - I'll get down off of my soap box now!

Robin said...

Oh my god... Absolutely unbelievable. I am so sorry you and your son had to go through all that! I'm livid and it didn't even happen to me.

(Thank goodness M's IEP went really well, because two problematic reports in one day would have sent me to the hospital with a coronary - or to jail for homicide!)

Anonymous said...

At my son's first psychological eval, the report said I had reported that all of my children preferred bare feet. I have no other children!

When confronted about it, I was told these things happen! We also had an incorrect secondary diagnosis show up on a later eval, which ended up being a typo and having absolutely NOTHING to do with my son!

It's infuriating, I know. I would run, not walk, to get away from her if at all possible. Either way, put your corrections in writing and insist that they be distributed to the team. If you can get them to do it, make them reissue the eval with the correct info and destroy the other one.

Good luck!

Fairly Odd Mother said...

Oh that is maddening. I hope it gets straightened out soon.

Robin said...

We're "lucky" Trish - this was a semi-private evaluation, so it's not going anywhere but to us, and I've shared it with M's psychologist - who we employ privately - because I wanted some perspective and a professional opionion that I trust. I'm not worried that this will screw her up for school, it won't get to the school (over my dead body!), more upset over the fact that it's a lot of wasted time, money and effort and now I still don't have conclusions I can trust about the sensory question.


Lion of Zion said...

i've found these types of mistakes to be common on consult evaluations from ots/pts/speech therapists and doctors.

i suspect that a lot of them cut and paste and accidcentally leave info from another eval that doesn't apply.

and they also see so many patients so that if they don't write up the eval immediately, when they do it later they may confuse patients.

my wife (an OT) thinks my son has sensory integration issues.

good luck to you.

Kaylia Metcalfe said...

Wow… I am so so sorry you all are having to go through this.

I really really really hope that you are able to fight it and make it right.

Besides the fact that an apology and a “person of authority” needs to step up and make it right… what a lesson that sometimes people make mistakes… and then grown ups Own Up To It.


Anonymous said...

I'm a little tired, so please know that "ugh" pretty much sums up how the OT's eval makes me feel. I can only imagine just how angry you are. We had pretty much the same experience when Jacob had his OT eval and, get this, she has since left the district.

We just got back Jacob's school report, and it was not overly positive. I locked myself in the bathroom and bawled for a solid twenty minutes. While I should take solace in that he is in the top 1/3 of his class for academics, it's difficult, nevertheless, for ALL his teachers to say how unfocused and disruptive and "quirky" a student he is. As a mom, it's heartwrenching.

It does sound like you have some supportive people in your life, though, so hang on to that.

Robin said...

Oh Lis. ((hug))

LoZ - it may very well be something like that, or possibly incredibly poor lsitening, note-taking and writing skills. Either is equally unacceptable. Is your wife working with your son or are you stuck in the same system we are? (This particular report was privately obtained but we're well ensconced in the system for the rest of it.)

Jill said...

My girlfriend's 6 year old has Down's Syndrome and was allowed in the American International School In Netanya. I can't tell you how many times she had to go to the school, deal with the incorrect reporting, deal with the O/T's, Speech Therapists, and with the teachers because of such issues with her "disabled child"... as they labeled her.

I would watch her face turn red and boil over as she would scream on the phone, and listen with my big ears as she would cry out in frustration.

And this is an American School in Israel!!!

Sadly, she's having even worse issues with her in Maryland... even with the "no child left behind" laws.

Good luck - and have a double cappuccino for me!

Anonymous said...

I'm sorry you are dealing with all these inaccurate evaluations. Good luck with getting Maya the help and education she needs.

I'm counting the years until Jordan is done with school. I could write a book about how difficult this path has been.

Karen in NY

Anonymous said...

I can't imagine how hard this must be for you, having to deal with erratic, inaccurate reports and trying to match them with what you see with Maya. I hope you won't go through this again!

Anonymous said...

I feel your pain. My daughter's on an IEP and we just finished another big round of testing. We got her report card from school today and it actually showed improvement. Then we got some test results, which pretty much said she's doing terrible. I pretty much tossed the whole pile of reports into the trash...

anymommy said...

That sucks. I'm sorry. I'm so glad she has you to fight for her and get it right and get the support she needs. I'm also so glad you had that very positive experience with her school to make your day not quite so trying.

We dealt with a fairly incompetent social worker during our adoptions and it was beyond frustrating, right down to having to fix paperwork to avoid being denied because she messed up the amount of children we had at home! Not the same, I know, but I understand the 'dear lord just do your job right frustration.'