Wednesday, May 9, 2012

Evaluating, testing, examining, analyzing

When we last left this issue, Genea's school had agreed to test her learning abilities to potentially put her on an IEP. For us, the IEP was not going to rock our world, just allow for a few little extras that would help keep Genea's mental health needs from mucking up her academics.

So they tested her.
Simultaneously, she was being evaluated by a psychologist referred to us by her pediatrician. The guy who after sitting with us for 20 minutes suggested putting together a team of professionals for her.

Between the 2 entities, Genea has been tested and evaluated for every possible thing. The school gave her speech and language evaluations, physical therapy evaluation, occupational therapy evaluations, reading, writing, listening, breathing. She met with the school social worker, nurse, psychologist, special education teacher,  and surely I am forgetting some. Oh, me! They all talked to me a lot for background and academic history.

The clinic exams took about 6 weeks. The psychologist spent 2-3 hours with her over several appointments and myself and her school teacher filled out evaluations up the wazoo. We got a new psychiatrist and met with him a few times.

Here is what they found about her learning abilities: Genea is stone cold normal. Average. Regular. Nary a learning disability for miles. Not even an obscure one, like non-verbal learning disorder, or speech apraxia. Zip. Indeed, she tested slightly better than she is performing in school these days. Gotcha.

Honestly I was sort of secretly hoping for one of those nifty labels I could point to and say..... "here, this is why she (fill in the blank)". I got nothing. A learning disability is taken seriously. A mass of mental health diagnosis however, can easily be misinterpreted as "just look at that sucky mom". In that regard, we got a boatload.

After filling out the evaluations and pulling apart the middle to figure out the scores myself (oops! the pages fell apart!) I see that Genea scores well over the cut off for "severe". There were several categories of like, mild, moderate and holy-what- the- fuck and Genea scored at the top end of the latter. Officially known as 1. Reactive Attachment Disorder 2. ADHD 3. Mood Disorder NOS 4. Anxiety Disorder NOS. Also meeting the criteria for Intermittent Explosive Disorder and Oppositional Defiant Disorder but by that time, seriously, the psychologist said this, it hardly matters. Right, I hear ya' dude.

At school then, she met almost no criteria for an IEP except for the ADHD. Every single person who met with her commented elaborately on it, and 9 professionals sat in on our meeting. Ultimately, she qualified based on that finding. For which I was not going to sit there and argue that it is much more likely hypervigilance than attention deficit when the fact is, she cannot focus regardless of label. Whatev.

The occupational therapist was the only one who had a significant finding. She tested Genea's handedness, coordination, gross and fine motor skills etc. She can use scissors brilliantly and trace a line with precision rarely seen, crosses her midline like a superstar. However, when it came to using both hands at once the OT said, it was as if the 2 sides of her body had never met. Not only could she not catch a ball, she could not aim her hands to meet together to do it. Now, that was interesting. We're going to work on that!

When I met with the clinic psychologist to get all of his results, I asked him a question. Genea has Reactive Attachment Disorder, what can we do about that?

His answer went like this, "well, of course you should coordinate with the schools and maintain consistency and integrate a routine and involve the services of ...... oh forget it. There is really just about nothing. There is no specific treatment or therapy that is shown to work. There are a few things you can do that will help, you are already doing them, and maybe try some EMDR, there are early studies showing that helps with kids like Genea".

I tell people that and they gasp, heads ricochet backwards, and they are pissed off for me that I would have to hear something like that. For the love of xanax, I was grateful. To hear the truth. Thankful, I was so thankful to know, I really am doing everything I can. I'm not missing something or hurting her with my ignorance of available treatment. I didn't skip over some crucial element that would have changed everything.

(EMDR is technically Eye Movement Desensitization and Reprocessing. The idea is that trauma is stored in the brain in a reactionary sort of way. Using tapping (HI LISA) sort of things, the person walks back through a difficult time while using bilateral stimulation in some way to move the memory or feeling into a more logical region of the brain to create a new insight. Probably if you are interested you should look it up yourself because my explanation here sucks).

So now we have our IEP, a new psychiatrist and a new psycho- therapist who does EMDR. There has been some forward movement though many areas still stagnate. I remind myself, progress for Genea is measured not in weeks or months, but in years.

Incidentally, the clinic evaluations were all sparked off when I asked our pediatrician to evaluate Teena for ADHD. She wanted to refer us to a psychologist for testing and I balked. Ugh, there is a 3-6 month wait, I knew for a fact. Aha, she tells me, she happens to be sleeping with (my words lol) the best evaluating psychologist available and feels sure she can get us in soon. A few days later her husband called us himself to say he would like to go to work on his upcoming day off to see us, can we make it? YEP!

Teena went through the same series of testing, over about 6 weeks, 2-3 hour evals at a time. The results show she has ADHD. In fact, she is in the 97th percentile of attention deficit. I was shocked it was that bad, I guess I've become acclimated a bit. If you go to your nearest bouncy house or Chuck E and pull out 100 random children, only 2 will have a harder time than Teena with focus. Wow.


  1. Glad you have all this information. Information is the only place to start.

  2. Wow, that sure is a whole lot to process. Do you think the IEP will help at all? Good luck, seriously, good luck. I know you've fought long and hard for all of this so I really hope it makes a difference.

    PS I love the photos.

  3. Hi yourself, beautiful! :)
    Thanks for the giggle.

    Glad you have the information and that the testing has been completed. I'm sure you are feeling relief although I know you well enough to know that you are doing everything in your power to help Genea.

    You are an amazing mom!

    P.S. Glad you're back too. Even if it's only for today and I have to wait 3 months to see another post. Hoping that's not the case.

  4. Sounds kind of crazy (as in - who am I to know?)...but didn't they talk about neurofeedback therapy? Occupational therapy? And it is interesting they said there is "nothing to be done" about RAD when DDP is known to have great results. Just wondering.....

    Gosh, I wish I could get that kind of testing for a couple of my kids, but I think I'd kick them in the shins if they didn't provide more treatment options!

    I guess you are having lots of fun at home. I think God knew I could handle just about anything but ADHD....because, yes, indeed - we have just about everythig else!

  5. Isn't it awesome when your kids excel on those tests!!

    I mean, it sucks that they excel in the completely wrong direction, but still...97th percentile!! She's kicking it!

    Noah has a few of those scores. Like only 3 kids in a hundred have more problem behaviors than he does.

    Good job getting all this testing done! Hopefully it will help guide you with both girls as you move forward!

  6. You NEED to look up, Agenesis of the Corpus Callosum. It's very prevalent in FASD KIDS. Email or fb me for more info. Smooches

  7. You NEED to look up, Agenesis of the Corpus Callosum. It's very prevalent in FASD KIDS. Email or fb me for more info. Smooches

  8. You NEED to look up, Agenesis of the Corpus Callosum. It's very prevalent in FASD KIDS. Email or fb me for more info. Smooches

  9. I'm very surprised they said there's nothing you can do for RAD. There's nothing medically I suppose, but therapeutically there is plenty. My 5 year old has RAD and she has come very far in the past year, since her diagnosis. You can work with an attachment therapist (do some research on this, some are bogus! Only a therapist who sees YOU, not your child is the right kind. The therapist coaches you on creating a bond with your child), you can read books, my favorite are Parenting the Hurt Child and The Connected Child. Both are awesome. Anything by Karen Purvis is amazing. Parenting RAD kids is very different and it's not easy, but there are things you can do, there IS hope.

  10. You had me at secretly hoping for one of those nifty labels....

    I still smash grocery carts and think of you every. single. time.

  11. Oops!
    I worried that I was not writing that clearly.
    The psych dude said there is no one proven thing that will "fix" RAD (my words). No pill, no handbook, no specific protocol etc.
    There are many things that will help it though and I am doing, or have done, every thing I have come across. I even got certified as a teacher of Beyond Consequences, Logic and Control. We see therapists, psych's, use natural supplements, etc.
    Some things are in research, or well indicated for RAD, like EMDR or DDP BUT there are no conclusive scientific studies to date.

    Linda I went to T@rget yesterday and they got all new mushy plastic carts that are NO FUN. I'm going to have to stop going there!

    Geralyn Genea had cat scans and such years ago done and everything was "normal". I've wondered about that though, if maybe partial damage would not show?

    The success of the IEP is still pending. She is getting help such as her tests are "read and scribed". Now, she can finish the test on time and gets more correct answers. They are doing lots of little reward systems though, which are great for manipulation!

    It IS nice to have some firm answers to work with after all that. Also good to know there is nothing major I have missed!

  12. I'm glad that they got you some kind of "answers" I know how it is when you're doing everything you know and everything you're told and all you want is someone to say "You're on the right track."

  13. Just had to laugh at your reaction to Teena's high test scores. =)
    When we had Katya evaluated a few years back and she too blew the test out of the water, I was all, "really? I mean I kind of suspected she had it, but didn't want to jump to conclusions" and the psych said he hadn't seen scores that high in loooong time and I think wanted to evaluate me for having a glimmer of doubt about the diagnosis. I guess you just get used to it!

  14. Too much to comment. Should really e-mail.

    I was feeling the same relief you were when they told you that there was really nothing else you should be doing.

    Zoo date this summer? Somewhere?

  15. ps Using your hands in different activities is BIG for connecting the two sides of your brain. Things I've heard help (anecdotally): swimming, piano and dance.

  16. Neuro Reorganization helps heal the right side/left side brain.
    My DD had EMDR sessions for several months. Too hard to treat pre-verbal trauma plus a few years of neglect in just a few sessions.

    I have read that developmental trauma presents as ADHD in many cases of neglect and/or trauma. If ADHD meds do not make a difference it is worth looking at the child from a trauma perspective.

    attach-china yahoo group has a lot of support and information from BTDT parents. They have opened their membership to any folks with children who fall into the RAD, attach, trauma window... regardless of where they are adopted from or if they even are adopted. Sad to say there are so many kids out there like ours.

  17. My kids with RAD, PTSD, etc., benefitted from attachment therapy, which included us every time. But after that ended, we moved to EMDR and Somatic Experiencing (both trauma therapies). These have made a huge difference with our kids over the past two years. We are also doing Capoeira (a form of mixed martial arts/ dance/ acrobatics/ percussion instruments) that involves a lot of rhythmic movement and a lot of crossing the mid-line and mirroring movements back and forth from both right and left starting points. It has made a big difference--especially for our youngest, who has big coordination problems and vestibular and proprioceptive sensory issues. At 8 yrs old, he is way behind in school and can barely read, but we can't identify a specific learning disability (though his IEP says he has one). It all appears to be trauma-related and due to the fact that he can't access his memory when he is overloaded with anxiety. His personality is also very compartmentalized and it is very hard for him to "go inside" himself. Reading tends to be an internal skill (being able to see things in the mind's eye, etc.). The more progress he makes in therapy, the more able he is to read.

  18. First time commenting but this post hit many hot buttons.

    History: I have PTSD, and OCD with fear of death. The event that gave me this occurred after the 10 years we spent putting our big family of 5 kids together.

    3 are int'l adoptions (Russia, China, and Guatemala)

    My Chinese Chunk-a-Monk is special needs and, we too, have run the f'in gauntlet of IEP's, pshy's, social's, OC's, speech, etc.

    My son is cognitively delayed without a doubt but NO ONE can decide on a "label".

    So we walked away from "them". Let "them" hash it out as we found treatments for our son.

    Neurofeedback therapy has been amazing (AMAZING) for he and I. For his cognitive/focus/verbal delays and my PTSD (my hypervigilance was helped...but is not gone)

    I have spent 1.5 years in EMDR therapy. I would NOT be able to uncurl from a fetal position w/o EMDR.

    strongly believe EMDR could dramatically affect your kiddo...for the good!

    One Tye, our sweet-struggling-thing, has the verbal skills (he is 9. He came home at 2 yrs old) he will do plenty of EMDR.

    Kudo for fighting for you KID...not a label.

    I don't really wanna "That Mom Sucks Cuz Her Kid Has XYZ" Label anyways...society is rude.


  19. Well my 2 boys especially are probably like the 3 kids in the room that have add/hd worse lol. I don't know the exact numbers really but both have severe add/hd mostly we see different behavioral therapists as well as tons of meds. The one has supposed ODD too as well as Pdd nos the other one has more of the anxiety issues and Pdd nos. except in my case it's dh and i's wonderful gene pool to blame. My husband has severe add/hd too.

    Anyway I hope things improve for you guys.

    And yes I still think of you when I go shopping and put my cart away. Every time. That was a classic post.

  20. Hi Essie,
    I found you on the web recently. I've read through all your old posts- which routinely had me snorting in an effort to contain my laughter and not wake my kids. I love your honesty, and your writing style. I'm glad that you've gotten some professional oppinions to back up what you already knew- some how people listen better to "professionals" then to moms.
    Thank you for your stark honesty, your humor, and the updates- I'm only sorry that I'm finding you now that you've stopped blogging regularly! Best wishes to you and your beautiful girls!

  21. This story sounds eerily familiar to my child's story! After making it through China's adoption requirements, we were just to happy to even think about testing for another few years. We are happily homeschooling and feel better able to manage our bounce house girl!
    Thanks for sharing.


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