No Day Like Today
My Boys

Evaluation Nation, Part II

God, these things are getting boring. I've got them down to a science:

Trot child in, answer questions, watch child stack blocks and complete puzzles and string beads, curse self for neglecting to cut child's long fingernails that are now caked with dirt because SOMEBODY has been reading The Snowy Day a little too much and wants to make snowballs out of EVERYTHING, including the mulch outside of school district office buildings, watch child absolutely excel years beyond his calendar age in educational concepts, watch child struggle with scissors and crayons and get increasingly agitated and line up toys obsessively and boil over when he's not allowed to pretend the occupational therapist's pencil is a choo-choo going through a tunnel of blocks, and finally then watch child wander away from the assessment team and get his head stuck in the miniblinds.

Oh, and my favorite: Laugh your damn fool head off when asked if this is what you'd consider a "typical day."

Even the conclusions are reruns now: fine and gross motor skill delays, sensory-integration-related behavioral problems. Oh, is that all you've got? YAWN. Bring it, dudes. I've Googled worse shit than that.

And of course, the least surprisingly thing of all, EVER, in the history of educational assessments, we won't know whether those conclusions will result in actual help and services for another month. Because everybody has to go off and write up reports and mail the reports in triplicate and then get together and compile those reports, each personally leveling two square miles of redwood trees to produce enough paper for all these reports, and THEN we get called back in for the verdict.

He'll also be observed at preschool by the school psychologist, and the special educator wants to talk to his teacher. Who, for those of you just joining us for this exact sentence, has (to date!) attempted to subtly diagnose poor Noah with everything from SID, ADHD, PDD-NOS, Asperger's and probably swine flu. So I bet that phone call will be really fun for her!

What's not routine for me -- what I hope will never be routine -- is the discomfort I get discussing Noah with these people. I know I need to stay on message and discuss what we came there to discuss, and obviously if I thought everything was just peachy I wouldn't be there in the first place, but after two hours of reducing my son to the sum of his quirks -- what he WON'T do, what he CAN'T do -- I start getting agitated. I start thinking of sticking my head in the miniblinds. This is Noah. This is my baby. My heart. Yes, he's a little different, a little difficult, a lot exceptional and I do really believe he could benefit from what our school district can offer but please please please don't look at him like that. Or at me, like that. With the pity, with the hand pats. Judge me for his dirty fingernails, for the fact that I don't know his current sensory opinion on glue, but don't feel sorry for me because my kid is who he is, because we fucking adore him and you should only be so lucky to have a kid like him RAWR SMASH MAMA BEAR HAD TOO MUCH COFFEE I SHIT IN YOUR WOODS WAIT WHAT WAS I TALKING ABOUT?

And then I wonder if I should have kept my mouth shut about how he's usually really well-behaved at restaurants (because he is!!) but maybe they didn't need to hear that part, oh God, our report will say: CHILD BEHAVES AT RESTAURANTS. IS CURED. MOTHER CLEARLY SPENDS TOO MUCH TIME ON THE INTERNET. NO SERVICES REQUIRED.

Anyway. Yeah. It was disastrously normal, overall. Which is good. I think they've gotten a pretty clear picture of what life is like for Noah. Complicated and contradictory, with a side of incorrect crayon grip.

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Comments

cassie

How frustrating. =/
But I must say "I shit in your woods" is the funniest thing I've heard/read all week.

Lorena

I always wish I had something wise to say to posts like this. Or at least something funny. But I have neither. Thanks for filling us in on all the aspects of your life, even the ones that aren't quite as hilarious as others.

I love in the above picture how Noah has a little vampire tooth. Hehe.

Floyd

I just love your little guys. And if it will help, picture all of us out here all Mamma Bearing up with you...and well, shitting in their woods.

A

I'm sorry these are so hard for you :(. Hopefully they'll all be a distant, annoying memory soon.

Gracie

We just did our first eval last week with our youngest, he just turned 3. But, we've been thru more than several with our oldest who is 10 and has ADHD and Aspergers. At the IEP meeting the team coordinator actually leaned over and took my hand and said .... "I know how hard it is to hear about everything that he *can't* do, or doesn't do well enough. But, we also realize that he's an awesome kid and very smart. We won't lose sight of that." I'd never felt more relieved in my life.

Hugs Amy......Noah is a fantastic little boy and so is his baby brother :-)

Marin

Argh. How frustrating. I hope that he does get the help from the school district but he will always know that you and Jason think he's perfect.

eva

Brutal. Don't ever feel pressured to re-share all this with us either, mkay?

But if you don't mind...what do you tell Noah about why he's going through these assessments? How do you explain it to him? Just curious.

Heather

On an unrelated note, we saw Monsters vs. Aliens today and at the beginning the bad guy says, "...with EXTREME prejudice" and I started giggling to myself in the movie b/c it reminded me of you. I've read that quote here a time or two and it always makes me laugh. Also, I like your mama bear impression above. Very funny.

MommyNamedApril

i say you celebrate getting through the evaluation by taking advantage of his mad restaurant skillz.

Kendra

I just love to read these things from you, because you just explain it all so beautifully.

My 5-year-old is in kindergarten and is a little sensitive, doesn't pronounce some things as well as his peers, has trouble recognizing the teen numbers--is a regular kid. But sometimes I get into conversations with my mom or his teacher or even my husband, and it feels just like that--like my wonderful, spectacular, amazing-in-very-way child is just a list of things he can and can't do. And it makes me want to cry.

And then I read what you're going through with Noah, and I remember that we're all trying to get the world to see how amazing our kids are. And you are battling a lot more than I am, and it's got to be so hard trying to get him the assistance he needs to be the best Noah ever. And I think it's so amazing that you can go through all this and work so hard for him and even find time to tell the rest of us about it. Good luck with all of it.

*m*

As someone now in my 8th year of being mama bear with the school district, I wish I could tell you it gets easier. It doesn't, exactly, but your knowledge of your kid and his needs does get stronger and a certain kind of confidence comes with that. It makes it possible to keep on advocating. As does the love for our amazing, fabulous boys.

You're doing great. Hang tough.

NotAMeanGirl

It sucks that you have to keep running the same treadmill for such minimal (at times) help. You lil guys are awesome and I LOVE that that is your priority rather than 'OH WOE IS MY MAH CHILD IS SPECHUL NEEDS AND THE SYSTEM SUCKS' I know not everyone is that way but I know a LOT that are.

As for shitting in my woods? Any-Day! Our kids can play together after!

Amalah

eva - Noah isn't at the age where he expects to know "why" we're doing things. (He actually never asks "why" for anything, ever. YET, anyway.) Which is good. We prepare him for WHAT we're doing and WHEN, but not so much WHY. Though I try to keep it pretty benign and upbeat.

Today I told him we were just going to a "different school" where some nice ladies were going to play games with him to "see how smart you are." That seemed to be enough.

lisa

Complicated Contradiction is my name and I am marrying a man who is an enigmatic mystery imagine what our kid is gonna be like! Anyway what restaurant are you taking Noah to showcase his restaurant skillz.
as always you are doing a fantastic job Mama Bear!!

Marianne

Nothing but good thoughts and hugs for you and your family, Amy.

Nicole

Okay, so swine flu? I LOL'd at that :) Am bad.

Another thing on the labelling. I get the feeling that you don't want him labelled with one thing or another (or another). I totally get it.

I was at a training session and one of the presenters was talking about her son who has been diagnosed with SID and ADHD (although its difficult to tell the difference sometimes). One of my colleagues asked her why she affixed these labels to her son - she responded that she was able to get him the help he needed because of those labels.

Or I could be completely wrong. :) In that case, I'm sorry. And you're an awesome Mama Bear :)

Karen

Evaluations suck. There is something that just feels so completely wrong about having to make your child out to be so much less than what they are just to get them help. We're in an early intervention program and while I really appreciate that our coordinator is planning ahead for the transition/testing for the school district at age 3, part of me just wants to scream at her because it is WAY too early for us to even know if our child will still need help then (she's only 18 months old). Just once I want someone to make a list of all the wonderful things my daughter CAN do and then make triplicate copies of that for everyone's files.

I wonder what they've written about me in those mysterious files... probably MOTHER IS IN DENIAL.

Loren

You are such an amazing mom!

claire

As someone who just started this diagnosis/delayed assessment I just almost lost it that was so accurate. I have to go through and do it with 2, 8 month olds. After our last one I thought I was going to have to hunt down the lady's home number so I could call her and confirm that yes Baby B does say dadadaddadadada and she learned it on the way home from meeting you. I felt like my life depended on her knowing that information!

Julianna

My mother was a special ed teacher. I learned how to read long before kindergarten, and after a spectacularly BORING year of kindergarten, my mom met with the school to try to push to get me skipped a grade. They wouldn't let me. Why? Because I wasn't good enough with scissors. What the hell. She pushed to get me enrichment reading activities which kept me sane, and in the end I'm a reasonable human being and productive member of society: and a teacher myself. Who, I might add, got bitten. BITTEN. the other day by a 6 year old boy who normally is lovely if a bit squirrelly. Who I'm sure will turn out to be a well adjusted adult someday, and his parents will laugh about how he bit his teacher once.

Each kid is different, end of story, and all these labels don't take that into account. It's another symptom of the No Child Left Behind Everyone Must Conform to Standardized Testing bullshit which I pray every day is on its way out.

Hang in there, and know that you are doing above and beyond what 99% of parents do for their kids--and realize that half these Syndromes and Theories were cooked up by researchers--not parents, not teachers.

Amalah

Nicole - Yep. It's true. The labels are a gateway to services, particularly once you get something on the spectrum. It's totally not that I'm against labels -- I'm against amateur armchair labelers like his preschool teacher who look at Noah and only see potential labels...instead of his potential. And I'm NOT comfortable with labeling him with something that I know doesn't really fit him for the sake of services, that much is very true.

Noah, for now. Has the SID label. It's not a label that gets you very far with insurance and some school districts, but (again, for now) I believe it's very accurate, since he actually really doesn't fit into the other diagnoses (I'd go into specifics, but zzzzzz long and boring).

lamom

You are probably googled out but I want to link to an insightful and short article. I want to preface it by saying that it's not the case that I believe Noah's difficulties are not real, but the treatments you are so desperately seeking to qualify for... well, take them all with a grain of salt. http://www.quackwatch.org/01QuackeryRelatedTopics/sid.html

Floyd

Talking about labels...

When my little sister was in kindergarten in Chicago, they tried to say she had an auditory-speech something or other because of the way she talked. We were baffled - then we realized that she was pronouncing all of her words with a heavy southern twang - my mom and i grew up in Georgia and have some thick accents at times and she was picking up on them. They kept insisting that she was speech delayed.

Needless to say, took us forever to clear that one up.

Heather

The part about "don't look at him like that!" about broke my heart in two. Remember that at least we in the blogosphere get to see the sweet and amazing side of Noah and are able to get a glimpse of the wonderful miracle he is to you.

Jo-Jo Ma

It is heart-hurting to have anyone look at your child like that. We will be reading and hoping the best for him. Love to that adorable, quirky, wonderful little Noah.


Joanne

Ugh, I do know what you mean, except I always *cry* when I have these meetings. I can't stand it, but it's my normal reaction and now I'm super pregnant so it's worse. It's so hard, because if they're short with us it makes me feel defensive and like crying and if they're super nice with us and I feel like they get me, that makes me cry too! At our first case conference with my son, I remember they asked me at the end of the meeting "What do you want for Anthony?" and I just ... what do I want for him? EVERYTHING! Oy.

They're just hard, these meetings, but soon our boys will be older and ... it will get better. Or something. Noah is gorgeous and sweet and it really will get better.

Andrea courtois

Amy- just a quick note, i know the evaluations are fustrating & the wait feels stuipd. But as someone who has LD's and until post college went through the evals every 4 years. It's all honestly worth it. Noah will apperciate it too once he's older, if he still has problems. The wait sucks, but having grown up through MCPS services i can promise you the time they spend away from you & Noah talking is so valuable. really allows them to figure out excatly what the deal is. I know maybe not excatly what you want to hear.

But i'm proof they do a great job. I went from almost failing the 3rd grade to being admitted & graduating from a top 5 MBA program in the country, something i know i couldn't have done without the services & care i got through them. Two of my siblings were in worse boats even younger and both are flurishing above thier orginal dire straits dianosis.

I'm sure the same will happen for Noah. I know this part sucks, but sadly this will happen over and over again. He'll get used to it too as will you. By my last LD testing right before grad school, i could tell my evaluator excatly which tests i was going to fail miserably. I was right each time, much to her annoyance.

Good Luck and keep strong. It will all work out.

Kris

I wish you lived in Canada...I could refer you to THE BEST psychologist in THE COUNTRY.

He specializes in children and learning disabilities. I know exactly what he'd say in this instance (because I know him very well)...you are having your child, a boy no less (they have a lot more issues than little girls, I have 4 boys) tested well before he is at an age where all of the kinds of tests that these people are saying you need, will give you no real indication what his issues really are. He'd say let them do the testing, throw the results in the fireplace and get him retested at age 6 or older preferrably by someone who specializes in children and learning diabilities/ neuropsychology type issues.

Noah seems like a FANTASTIC kiddo. I hope you are able to resolve the things feel are needed and get the support you need through all of this...the process, it sucks, I know.

K.

amanda

I can totally relate. My son was recently diagnosed with high functioning autism... and we've been back and forth through so many evals, it's ridiculous. I'd love to say it gets easier... but not that I know of. :P

She Likes Purple

I wonder if that's just a facet of parenthood (I wonder because I'm only two months in), but my boy had some serious colicky/gas/reflux issues for awhile and screamed like you were pulling his toenails off for hours a day, everyday, and it wasn't exactly easy or fun, no. It was, quite simply, HARD. But whenever someone else would comment on his screaming (my favorites: "well isn't he a toot?" or "someone's in a MOOD"), I would lose my shit. I'm allowed to bitch about how difficult this is and how hard this is but he is my boy, my son, my CHILD, and you are not allowed to judge him or call him difficult or walk quickly away showing your obvious gratitude that he isn't yours. You'd be lucky to have him, I said to complete strangers.

And we'd all be so lucky to have kids like Noah. And all kids would be so lucky to have moms like you.

Jennifer

My son is 7 and is Aspergers. Your assessment story sounds similar to ours at Vanderbilt University....except for my son picked up the trash can and put his head in it...which was, of course, noted in the report that he used trash can as a toy. I don't know why these people aren't wowed with his ability to recite an entire Spongebob episode after seeing it twice! Hang in there, our numbers are numerous!

Rebekah

I work in the mental health field and its so true - "Labels R Us." While a label can open the door to services and insurance won't pay without one, I think that your writing about this experience is a beautiful reminder that we are all PEOPLE - we are not our symptoms, diagnoses, syndromes, blah, blah, blah. Good for you for focusing on all of the things are RIGHT about your son. The "helping" profession tends to emphasize all that is wrong without recognizing that there is so much that is right.

JRM

I'll have a hamburger, with a side of incorrect crayon grip, please.

Karen

Congratulations on getting that over and done with. We just had the big meeting for my little guy two days ago (verdict: sensory issues and low muscle tone) and what really struck me was how they were able to see all of him. They got the heavenly and the challenging, though the focus of their reports was the challenging (as it should have been). What I'm getting at here is that I hope your evaluators, your experts, got that too. I have to believe that even with his head in the blinds, they saw what a sweetie he is. And even if for some reason they didn't, what matters is that you see it.

Hang in there.

denese

well wishes. best i can really give.

second best i've got is similar to the previously posted: you are a great mom, noah will bloom brighter out of your positivity, you gotz cuuute kidz.

third best is: head stuck in miniblinds? i wish i didn't feel guilty for thinking about laughing at that. i honestly don't know how i wouldn't drown in the waves of frustration, hopelessness, and bitchery if i were in your situation. i hope the system gets shit done for your family soon.

Sprite's Keeper

At least it's done. And it sounds promising. They got to see Noah as you wanted them to, right? I hope you get exactly what you want out of it.

M

There's a correct way and an incorrect way to grip a damn crayon? How about Noah grips crayons however he wants, you school jerks!

Man, I even feel like a scary Mama Bear and he's not even my kid.

Nette

Everyone else has pretty much said anything I wanted to say so I'll just add...

I LURVE Snowy Day. You made me melt a little when you said Ezra Jack Keats was one of the considerations when you were choosing names. I read several copies of Whistle for Willie to death when I was small.

That's my trivial comment - cheering you on and fangirling for a favorite childhood author. :o)

Emma

Incorrect crayon grip!!! (I hope thats not really what they said about him.) There is no correct way to grip a crayon. I grip my crayons the right way and I am an epic fail at coloring in the lines and writing legibly.

Poor Noah. Being constantly told that his way of doing things that is obviously waaaay more fun and interesting, is The Wrong Way. :-( He is lucky that he has such wonderful parents who love him because of/in spite of this!

jodifur

Noah is just such a delight.

I hope everything works out for the both of you.

melody is slurping life

Understanding your frustrations x3 and also LMAO at the "I shit in your woods".

They are both adorable.

kaleigh

Your're doing a great job. Seriously. As a former special ed teacher, I can only wish that any of the kids I worked with had parents like you.

You're doing right.

SueBee

Mama Bear, you ROCK. Noah cannot advocate for himself--he has to rely on you and your incredible instincts. Be tenacious. Be a bitch. Be whatever you have to be to make sure Noah has the absolute best educational opportunities you can give him.

You can do it.

Jennifer

Okay, so I can't remember how I ever found your blog in the first place, but I'm a recent subscriber. And I just tonight finished all the paperwork so our daughter can be evaluated by an occupational therapist for sensory integration issues. And when I tell my friends that, they are supportive and concerned and think I'm speaking in tongues.

Anyway, thank you for making me feel less lonely.

PS: My daughter's great at restaurants, too. Maybe they're hypnotic.

Jessica (at It's my life...)

I can't fathom how hard it must be to hear them reduce your beloved child to the sum of his quirky parts and know that you have to resist the urge to brag about how awesome the total is because if you do they might deny him the services that he needs. ARG.
I have nothing constructive to say except that you have all my hugs for the day. And also that Noah is an awesome amazing little boy and the therapists might need to see the quirks, but we, your friends in the computer, we know just how awesome the whole child is.

Michelle

*sigh* The waiting games of life are just SO MUCH FUN, aren't they?

Rachel

I can't imagine how difficult this all must be for you and your family. Noah is an adorable child. Keep fighting the good fight for him! You're a great mom!

Paula

What I always want to know is...do you ever cry at these meetings? I, too, have a son with issues that never seem to fall into a neat little diagnosis box. I go to all the various conferences and listen to all the things my son does wrong. And then I cry. EVERY TIME. I can't take the constant hits. All I think about is what a wonderful, loving, unique person my son is and it just makes me want to completely lose it. I think they know where he gets his emotional immaturity from!

I am gearing up for another one next Monday (IEP meeting at his school). Scared s*itless.

Stephanie D.

Hang in there Momma Bear - you are doing great. As the mom of a 15-year old ADD son (dx at 5 yrs old).... it all works out in the end. I PROMISE!

Hugs & kisses to you & Noah and nom nom nom on Ezra. :)

Laura Hedgecock

This has well prepared me for my lunch date with my girlfriend who's son once made a B in chorus but has only ever made A+s since, plays perfect soccer, has perfect friends.....

Seriously, you've come on quite a journey to shed your defenses and have your son evaluated. I'm sure the first thing they'll write down on their charts is that he has a wonderful supportive family that tremendously increases his chances of future successes.

But if those evaluators are judging your son rather than advocating for him, tear them a new one....

Deb

Incorrect crayon grip? Really? I see plenty of so-called "normal" adults who hold their eating utensils in what I consider to be an unusual fashion--but whatevs! I cannot judge! You're awesome and so are those two delights you are raising. Best of luck, and keep us posted.

Jane

Rock on! It shows amazing strength to go through all of this to try to get your son some help. I live in such denial that anything might be wrong, my response tends to be 'leave it alone and it will go away', because it might be 'hard' (insert whiny voice) to deal with. Good for you for facing it head on.

Amalah

Paula - Yes. I do cry, sometimes. I'm getting better, since it's not like anything "new" is turning up anymore. But I do get very choked up when answering certain questions, like having to admit that when Noah truly freaks out he will hit or kick me sometimes, or how his preschool has all but given up on him. You know, the stuff that runs so contradictory to who Noah really is, because WE haven't figured out how to really help him through certain situations.

B-Bell

My favorite weird evaluation and label experience is when a psychologist pinned the nose on the fairy and knew exactly what was very clearly, textbook-y wrong with my kid (like, what I had called and said "she has XYZ, can you treat her?") however, our insurance didn't cover therapy for XYZ. So, he said "Gee, do you mind if I diagnose her as ABC for the insurance? I'll still treat her for XYZ, we know she has XYZ, but we'll need to plaster ABC all over her records in order to get payment for my time." Ugh.

Brandi

Add me to list of people confounded by the incorrect crayon grip! Say what!

Also add me to the list of people wishing you and Noah well today and knowing that Noah is an awesome kid with amazing potential!

Ashley Fitting

Hang in there - And shit in their woods all you want :-) Sending hugs and tons of support from the internet crowd. :-)

Kristin

Nothing to say except I am sorry you have to put up with that crap. Noah is fabulous just as he is.

Jen O.

Your boys are perfect.

There are things that are going on somewhere in his mind that may not be perfect that may need to get sorted out and whatever, but Noah is perfectly perfect.

And Ezra, too.

Oh, and little boys fingernails are supposed to be dirty sometimes. That's how we know that the little boy's parents let him be a little boy. My mom has a plaque that says: Good mothers have dirty ovens, sticky floors, and happy children. If we concentrate too much on clean homes (and clean hands), we neglect to concentrate on letting our children be children.

meresa

Sounds like a true test of patience. We've all got a little Mama Bear in us. Thanks 4 sharing.

Hope

I love that he got his head stuck in the mini blinds - he's a kid after my own heart. Sigh...

Emily

Amy,
I'm not a mom and don't intend to have children... but for whatever reason I continue to read your "mommy blog" - It's because I think you're an amazing mother to your two boys and it's a joy to see and read about it on a daily basis when there are so many parents out there that don't/won't fight for their kids like you do.
Keep fighting the good fight!

kris

I'll keep my fingers crossed that the services Noah needs keep moving in the right direction. As a friend of mine said to me the other day (she had some blah news about something with her son) "I never knew how heart breaking it would be to be a parent". You guys are doing great and I think it's good Noah doesn't need a why at this point. Why's are hard to explain.

I'd totally cry too at these sessions!

Amy in StL

Well, clearly I'm not ready to be a parent. I had no idea there was a correct way to grip a crayon. Although, I did once almost break up with a 45 year old man who held all his utensils in a fist.

T

Never commented before, but I just wanted to say I think you are an awesome mom and exactly what Noah needs.

Sarah @ BecomingSarah.com

Good luck waiting for the results to come back. In the meantime, just keep hanging in there. I know Noah appreciates it =)

Karen

*hugs*
We have our final IEP meeting on May 11th. I'm sure I'll be crying and drinking wine by that evening.
Budget cuts are pushing us into public school even though developmental school is what is best. Sometimes being a parent sucks....and sometimes you just get tired of fighting. Stay strong, momma.

Stephanie

What a difficult thing for you all to have to go through. How can a mother not feel judged while while someone evaluates her child? It is so clear to all of us, your readers, how fiercely you love and adore those boys and have done everything for them in the very best way you know how. Remember when you were most concerned about his speech? You are going to get through this to! Hang in there.

And go have a big glass of wine.

Josie

Hi Amy!

I'm currently in a School Psychology PhD program at the University of Washington, and posts like this are awesome for me to read. I'm always working to make the evaluation process better for families, and focusing on strengths (as it is kids strengths that help them build their weaknesses!). I have a question...in both this post and in a tweet you seem to react to the question "is this a typical day?" Can you elaborate on what answering that question is like for you? Because I ask that all the time and saw it as sort of an innocuous question.

Hugs to you and yours!

Sallyacious

Your description of Noah's love for "snowball" making reminded me of this Japanese art form (not sure that's the righ term, but that's by the way), the hikaru dorodango. There's a great article here (http://web-japan.org/trends01/article/011005sci_r.html) on how much kids of all ages like to make them, and some really easy instructions. I don't know whether Noah would enjoy it, but it might be fun.

Amalah

Josie - great question! No, there's nothing WRONG with the question. You guys need to know whether what you're seeing is out of the ordinary or not -- the stress of the eval or more or less what the parent expected. But for those of us who live with these quirky, completely unpredictable kids, it's can sometimes be hard for us to figure out what's "typical" too.

Mostly, for me, the question is simply amusing, because with the exception of our very, very first assessment by Early Intervention (done at home, on the floor, EXTREMELY low-pressure and non-demanding), our evals have been full of tantrums and dram and "non-compliance!" and "self-directedness!" He's been "difficult."

Basically, he's exhibiting everything I WANT them to see -- the stuff that happens at a birthday party or school or when the entrance we usually walk into at the mall is closed and we have to walk into a DIFFERENT entrance, gaaaah, etc. It's bittersweet to have to label that as "typical," but...yeah, I guess it is, in a way.

I also laugh a little because of the look on their faces when they ask it -- it's usually asked when Noah has just completely checked out of the process or is running around all crazy-like. "Is this a...a...typical day for him?" There's a hint of exhaustion, awe and probably a little of that pity I mentioned. Like they're hoping I'll say that no, this is way worse. Instead, it's like, haaaaa. Yeah. This is my life, and welcome to it! God bless, try the veal.

Things I really appreciated from yesterday: if Noah completed something that was above his age range or was considered "advanced", they told me, and praised him for it. They never let Noah know when he'd done something "wrong" (although he probably knew anyway, with a couple). And one evaluator kept going on and on about how cute Noah is and gushing about his dimple. I liked that. You should totally do that. Heh.

Josie

Thanks so much for the great response. Yeah...I'm a big gusher, anything I can find to compliment a kid or his parents I go a little crazy. I think the best thing that we can do as practitioners is to communicate HOPE through the eval and intervention process, instead of the fear and inadequacy that so often comes across. I'm sure you will run across your share of duds through this, but you are an amazing advocate for Noah, the kind of parent I love to work with. Thanks again=)

Laura

Just completed speech eval for my son yesterday. He's 4 1/2 and they say he communicates on a 2 1/2 level. I just get so tired of the "Can he..." "Does he..." and having to say "no, no, no...but he has an incredible memory, knows every facial expression of everyone in every movie he's ever seen, can count to five, has a wonderful sense of humor...is an all around great kid." I read through your comments to this post and cried and felt a lot less lonely in all of this. Thanks, Amy, for talking. For talking to us, and for speaking up for your son. We're right there with you.

Karen

Hi there,

I've been lurking for a little while and am finally poking my nose up to say hi. I really appreciate your posts on this topic.

My son doesn't like to play with toys - he plays, just not so much with the toys. And I found out that some evaluators seem to take offense when the child will not promptly sit down and play with the toys, because there is a schedule that must be adhered to. So now I announce at the outset that the Child Does Not Like Toys, but he'd be happy to type on your computer keyboard or disassemble your Blackberry.

Ugh.

MichelleRenee

Cured! I love that. .

I had a speech therapist excitedly tell me my son was not eligible for services because he spoke SO WELL..then not 5 minutes later, asked me to interpret because she couldn't understand a word of what he was saying.

Parsing Nonsense

Noah is so lucky to have a mother who doesn't reduce him to the sum of his quirks and who adores him. It's not an easy row to hoe, but you do it with grace and panache.

Kelly

Hang in there. I know it is rough, hopefully the system will get their butts in gear and get you a diagnosis that will get you some help.

My son is 4, and tests moderate for autism (tests about a year behind socially), he is extremely high in educational skills and when he was tested with the school system, I prayed for a "bad day" because I knew they care more about the educational needs than the social needs. They tried to give me a lower label than autism, but I knew that then he wouldn't get the services he needed so I pushed for it.

Hopefully you will get the results you need.

PS - my son won't hold a crayon right either...until a few weeks ago he would freak out at the thought of holding one!

kim at allconsuming

I'm not sure if this is any consolation, but you get used to it - doing the can'ts as opposed to the cans.

You see, as a parent it is our natural instinct to look at what our children achieve.

It is also a natural perogative of a therapist or educator to do the same - look at what they've achieved! As opposed to 'well he bit Timmy again today and here's his undies that he did a poo in this morning'.

But when it comes to accessing the services - in the first place or when up for review - or funding you have to talk up the bad - that way you may get a quarter of the support you really need.

Shit. This was meant to make you feel better and instead it's demoralising even for me.

I remember the most liberating experience I had when oscar was a pre-schooler and we were at the assessment centre AGAIN to determine his capabilities prior to starting school. We were all sitting around, the 'team' with their clipboards, me with my tissues.

They said, 'what do you expect to gain from today'

And I said, very calmly and matter-of-factly, 'Absolutely nothing. Nothing you will determine today will change our day-to-day activities and therapy plans for Oscar. None of it will truly reflect his character or personality. We are here because we have to be.'

The look on their faces made every heart crushing appointment or verdict or finding about our special little guy fade just a little.

Kristin

I just found your blog a few weeks ago and I love it. You never fail to make me laugh. I had to comment because that part about mama bear shitting in the words was FUN-NY. I have two boys (3 and 1), and you remind me of myself in so many ways. Keep up the great blogging!

Paula

Amy,

I never fully finished my comment...I asked you if you ever cried during these evaluations.

I wanted to go on and say that I always feel like they are talking about someone else. They seem so clinical and cold. I know some of these people are mothers and fathers but I guess they don't personally know about kids that don't fall into the "normal" category or else I would think they would be able to deliver their statements with a little compassion,shit even a smile, would make me feel better.

I lost it at his school conference when they told me that he cries a lot during transitions (especially when he has to leave the classroom for speech or OT). I was not aware of this and the thought that he cries every day and no one told me this (he would never tell me this)made me furious and very sad...hence the crying. ACK

I just want you to know that you and your husband are doing the very very best for your child and that there are a lot of people who read you and silently nod and yes, cry along with you. We know our children are perfect for us and that they will find their own spot in life at their own speed.

Thanks for sharing your stories.

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