Evaluation Nation
April 16, 2009
Where do I begin?
On the one hand, I'm glad I never got around to writing that entry about all the fabulous leaps and bounds we've made with Noah over the past couple weeks -- at least not the version I had in mind, which was puff full of Confidence! We've Turned a Corner, Everything Is Fine Now! We're Totally Going To Rock This Evaluation Wheeeeeee!
(I just love setting myself up to look like a complete jackass on the Internet. I really do.)
On the other hand, I'm glad I at least mentioned it, because otherwise you'd all probably pelt me with your liquor bottles when I tell you Noah's results:
Motor: Failed. Spectacularly.
Vison: Passed. Non-surprisingly.
Hearing: Abstained. With EXTREME PREJUDICE. (Though his tympanogram looked fine.)
Cognitive/Educational Concepts: Passed, sort of. It's complicated. We'll say: Passed. With EXTREME ASTERISKS.
Speech:
Ha ha ha ha. Wait. No. Sit down.
Speech: Passed. Spectacularly.
The speech therapist praised his articulation (ha ha ha), his ability to label objects and actions and answer questions, his spontaneous speech (which mostly consisted of elaborate protestations and declarations of woe, misery and the unfairness of life as he knows it) and finally admitted that she didn't understand why any concern was still being raised about his speech. He's FINE.
And I was all, "Yeah...I've been meaning to blog about that."
Noah's speech has EXPLODED over the last couple weeks. We have CONVERSATIONS with him. He tells jokes, he makes up stories, he answers your questions with honest-to-God actual answers instead of context-less scraps of dialogue from TV or books.
Last week, while we were away, he told me he was sad, that he wanted to go home, that he missed Daddy. When we went away a few months ago, he told me he was sad, but when I asked why he said something about 15 missing puppies and left it at that.
I don't know whether the leap coincided simply with inching closer to four years old, with reducing his preschool attendance, or our discovery that hey! You know how he really, really, really likes music? You think it would be nice if we played more music for him? How about I put my iPod in his room with a playlist of his favorite classical music and the Vince Guaraldi Trio for him to fall asleep and wake up to, or to go "chill out" to in lieu of endless "time outs?" Huh, I dunno, does he seem a little more centered and calmer to you, like his teacher maybe mentioned a few months ago, when she started playing background music during the day?
No, no. Hold your applause. We are not parental geniuses, we're just really, really slow on the uptake.
ANYWAY. The speech ruling did not come as a surprise, though it was still a huge, HUGE fucking relief to hear it.
It was our one small relief in an otherwise hellacious morning, however. You know it's bad when OTHER PARENTS in the screening clinic are giving YOU the "I'm glad that's not MY kid" looks.
I knew this situation was not going to be ideal. I knew it was going to trigger a lot of Noah's worst behaviors. I knew he wasn't going to move from station to stations easily or be interested in the assessment tools or willingly allow them to put headphones on him to test his hearing and I knew that was kind of the point.
I wasn't prepared for Noah being the ONLY kid having difficulties. I wasn't prepared to sit and watch three-year-old after three-year-old obediently leave their puzzles to go show the occupational therapist that they could stand on one leg while my kid howled, screamed, kicked and fought. I wasn't prepared to watch him fail so many activities -- can't copy a circle, can't hold scissors, can't shape clay, can't fasten a snap, can't catch a bounced ball, can't stand on one leg -- one right after the other. I wasn't prepared to see how many of his mastered skills fall to pieces in the face of his unease with structure, demands and transitions. I wasn't prepared for my sweet, loving, gentle little man to smack me -- repeatedly -- in front of the child psychologist.
The upshot: those damn sensory issues, man. We were aggressive with speech and it paid off. We allowed ourselves to be rattled and bullied by a terrible occupational therapist and are paying for that now. The OT today was shocked that Early Intervention graduated Noah on the basis of speech alone, when clearly he has significant motor delays. Follow-up recommended, check.
The special education teacher had the MOST success out of everyone when it came to coaxing cooperation from Noah, and even she was unable to fully complete her assessment. Her take: he's smart, very smart, but the level of non-compliance makes it appear that he doesn't know half of what he really knows, and his non-involvement and discomfort at school are causing him to shed skills and resist absorbing new ones. (When he started preschool he could count to 20 and recognize most numbers and letters of the alphabet. Now he can count to 10 and gets numbers and letters mixed up.) Basically, this is a smart kid on track to hating and underperforming in school because *something* else is going unaddressed. Follow-up recommended, check check.
(Whenever I write stuff like this I invariably get comments reminding me that "he's ONLY three!" like I need a refresher course on my kid's age, or like I'm expecting him to be mapping the human genome as opposed to sitting on the stupid blue carpet at preschool. I used to get the same comments when he was "ONLY two!" Does anyone know at what age people stop hassling you for trying to be proactive about your child's developmental and educational issues, or for taking advantage of early childhood programs that EXIST FOR A REASON? When he's ONLY four? Seven? When he's dropped out and knocking over convenience stores at ONLY 16?)
The school psychologist will be observing him at preschool, and we're going back for another (more thorough, less sensory-triggering, hopefully waaaay more enjoyable for Noah) assessment with the OT and special ed teacher at the end of this month. At that point, recommendations for services will be made. Check check, check.
***
Dear Noah,
I'm so sorry. I'm so sorry Daddy and I had to take you that place this morning, that place with all the cool toys that they only let you play with for a few minutes before whisking you away time and again to go play with less cool toys. I'm sorry that lady tried to put the beeping thing on your head. I'm sorry that other boy grabbed the elephant out of your hand but we made you share with him because we were too busy filling out forms to realize that he was the one who wasn't sharing. I'm sorry the little things are so hard for you. I'm sorry that I just don't understand sometimes.
I'm so proud of you. I'm so proud of you and your smart, wonderful, mysterious brain. I'm so proud of your good strong eyes that never miss a thing. I'm so proud of how far you've come and how well you talk now. I'm so proud of what a happy, confident boy you are, in spite of everything else.
I love you, Noah. I love hearing everything you have to say. I love your voice, your smile, the way I hear you humming along to the music in your room. I love how you manage to thoroughly charm people, even when you're making their job a little harder. I love how you always give me another chance to be a better Mommy, a more patient, fun and understanding Mommy, and how a rotten morning can still lead to a wonderfully sunny afternoon.
You're too amazing for this world, Noah. And that's our problem, not yours. Don't ever forget that.
Love,
Mommy
oh, amy. oh, noah. you two are amazing. truly amazing. i don't even know what to say, i've never fought this particular battle before, so i don't know what helps and what doesn't to say. but still, my best wishes to both of you. somehow, this little angel will get exactly the help he needs. i know this because i know YOU will make sure of it, you amazing mother, you.
oh hey, i'm first? yay. :)
Well, whatever is actually going on with him, you're doing an awesome job trying to get him all the help you can. I'm sure it will pay off.
Sometimes the only way to heal is to go through the hurt. Big hugs for Noah and a huge glass of wine for you and Jason!
For whatever it's worth, as a teacher with a special ed teacher for a mother, I think you're doing a great job. Your boys are awesome. Hugs to you.
You know, parenting can be a bitch sometimes, but it's almost always wonderful in the long run.
My oldest had some problems at first, she's off to Sarah Lawrence in the fall.
I like the way you always remember that you're the grown-up and Noah's the kid. I don't always remember that, even now.
Amy, hang in there. You're doing all the right things and even the sharpest advocates get intimidated. There is no how-to or rulebook on this, we have to make it up as we go. Just remember to breathe and keep going.
You guys are doing all the right things. Hang in there. I'm rooting for Noah, and you. Big hugs to you. Oh, and some wine. Helps me on days like these. :0)
actually going back to reading this again, i think it's amazing that his teacher even noticed that music helped him. that's such a subtle thing, so it's really no surprise at all that it took so long to apply around home. i mean, whatever helps, helps. sometimes, it's a total crapshoot figuring out what does. what works beautifully for one kid might be hell for another.
Mother of the year? You.
I would say more but I can't see through my tears to type.
Don't listen to the critics! Only YOU (& I guess maybe your husband) know what's right for YOUR child, so don't stop until you get there. Your letter to Noah was so touching. He'll be fine, just keep the best you can. :-)
I'm getting all choked up just on the Dear Noah letter. You are an AMAZING mother, Amy. Any child would be lucky to have you as a mother.
That's so wonderful about his speech and I'm glad that these people are seeing what you are seeing and are willing to help.
I love how much you love Noah. I'm glad you guys made it through the evaluation, and you're on the way to figuring out just what he needs. And I'm so excited to hear how his speech is blooming! That's awesome news.
To Amy & Jason: Hugs for being very involved parents and doing the heavy lifting on Noah's behalf, before he's old enough to realize there's lifting involved.
To Noah: You are perfect and wonderful and tie for second cutest boy on the planet. (sorry, my son is first.)
To Ezra: Nothing really but NOM NOM NOM.
i am crying like almost full out boo-hooing. this is it you know. you have a baby and wish the world for him, and when he is a bit different you go through all these emotions, and people judge you. life gets so freaking hard and all you can do is love him. ake him to therapy with all these strangers trying to teach him because you couldn't. but all you do is love him. and everybody judges you. not me. you are great. he's fine and you are doing great. i want to hug you! anyway, sorry but this really just got me and set me a-crying.
On behalf of every elementary school teacher in the entire freaking country, THANK YOU for paying attention to your child's developmental shortcomings as well as his strengths!
I would relish working with parents like you rather than parents who frankly don't give two hoots how their kids are doing.
Anyone who says you are being too "obsessive" can come spend a day in a room full of first graders who have had NO preschool or other educational or social preparation for school, THEN we'll see what they think about what you and your husband are doing for Noah.
Yay for you, yay for your family, yay for Noah!
Oh, Amy. I'm cheering for you all. I know what it is like to watch your child kick and scream through something that hurts, but is necessary. And so I'm teared up here, but I am also cheering because I know your ending will be a great one.
Good luck & HUGS.
Evals are the best time for the shit to hit the fan...so for that I'm glad. I'm sorry for the nerve-fraying experience and the strong desire to drink that follows these things. LOL.
Awesome on the speech!
As for everything else, it sounds like there were people there who are really in Noah's corner to help him figure out things. (in addition to you guys of course) And hopefully they can help create a plan to help him out.
It sounds like it was a rather illuminating kind of morning.
Mummy needs a drink.
I'm glad I'm not the only one crying over your letter to Noah. Your love for him just knocked me on my ass.
Thank you for NOT saying "oh, he's only three" and ignoring the problems until he's dropped out at sixteen. You are doing the right thing, and his life will be so much better for it.
You are teh shizzle!
You're doing such a good job, even if it doesn't always feel that way. Noah is lucky to have a mom like you.
Oh, and the "he's ONLY three" thing? I get that all the time with my four-year-old from people who only read about the crap we go through (he's a pediatrician-diagnosed ADHD poster child). Once those same people actually witness him running in circles around their living rooms or swinging like a monkey from our dining room light fixture, they switch from "he's ONLY four" to "What are you going to DO with him?", like he's already the 16-year-old hoodlum knocking over convenience stores. I try to ignore all of it.
You gotta just keep plugging along in this life.
Hooray for your little family.
You should add a picture of Noah to the end of this post, so that we can look at his sweet, sweet face while we cry. Your love for your son is beautiful. So, so beautiful.
I've been following your blog for a while now and I just wanted to say that you and Jason are completely awesome. It's clear that working with Noah has been a rocky road, but he seems like such a wonderful kid and with two wonderful parents, he's going to suceed. I like that you wrote him a letter about the whole evaluation experience. The last line of the letter reminds me of a couple of friends of mine, who's child was recently diagnosed with slight autism. It's clear with their son--just like with Noah--that he's smarter than anything, he just percieve things differently. And that's okay. So, for you, Jason, Noah and even little Ezra--I salute you. Rock on.
Amalah, damn you! I'm choked up at work again. You are obviously one kick ass mom. You all will get there and of course you want to take advantage of all the help you can get so that things will be easier and more fun for Noah.
Yay for Noah's speech progress! And yay for finally finding evaluators who, you know, actually evaluate like they are supposed to. Hopefully this will finally get Noah on his way.
And I have to 'fess up to blubbering a bit as well when reading your letter to Noah at the end. Your sweet posts to your children are a whole other kind of NSFW. :-)
I really hope you can feel all the support coming your way!! Thanks for sharing Noah with us. He is so special in the very best sense of the word.
That was one of the very best posts you have ever published. All of it - every word.
I hope this doesn't come across as insensitive, but there is something so utterly fascinating about Noah's sensory issues. I hope his speech continues to accelerate so he can tell you why he can't or won't do certain things.
I think his answers will be very well thought out and perfectly reasonable.
Again, this was an amazing, amazing post.
Noah is amazing. You and Jason are amazing. You guys are doing everything right and everything you can. Just keep trucking. Just keep pushing. I understood everything Noah said to me when I saw him recently, everything. That is a huge feat.
And hey, maybe you will get FREE PRESCHOOL and a school that meets all of Noah's needs out of this. How bad can that be?
You are absolutely doing right by him.
I'm so sorry it's this hard though. I can totally sympathize.
And I'm very happy to hear about the speech explostion. Now you can get sassed properly.
You guys are such great parents. I am in tears from the letter. How many times have I wanted to say the same thing to my son after putting him through an unpleasant experience, you are just awesome.
I know you do not know me, but I am an early childhood special educator. I have done these evaluations many times, and it must be so hard for you to have to see him go through this. It is very exciting that Noah did well with his speech evaluation! It is nice to see when the hard work by you has paid off. I really believe that an OT will help Noah with his sensory issues as well as his motor delays. An OT can teach him and you how to work through them on his own or how to ask for help. Maybe if he can feel better, he will be able to let you know how smart you know he is. I really hope that the second evaluation goes well for Noah. I will be thinking of you guys. If I was Noah's teacher, I would be very impressed with how well you are advocating for Noah. Keep up the excellent work.
What a blessing that your child has such an advocate in his life. I've spent a lot of time in preschools and elementary schools and it's amazing how many parents don't seek out the help their children DESPARATELY need. Good for you for not ignoring the things that worry you. Thank goodness you live in county that has the services that will aid your son for many years.
And thank you for sharing your story. Maybe someone else will gain the courage to be an advocate for their child too.
Never listen to people who say he's only. Only you know your child. You need to raise your child, you need to feel comfortable with your child. There are parents who go overboard, but only you and your child know where that line is. Good job making sure you are able to take advantages of the services that are offered, and making sure he knows that you love him enough to do all of this!
It's really fantastic that music has such a soothing effect on him, no wonder he loves Little Einsteins so much!
Fantastic post. Give Noah a big hug from his internet fans. You guys are doing a great job.
I KNOW he's only three and I know you have a lot of work left to do with him and tons of other crap and I am probably not the first to suggest this but in case I am? What I am getting from this post is- musical, music therapy, musician. Your son is making leaps and bounds in his speech through music. There is no reason to believe that he won't improve his motor skills through the same kind of direction. Right? I mean, of course it's more complicated than that but it's also so exciting!
The head of our district's autism team introduced us to the Ziggurat Model (http://tiny.cc/gc77q) which basically says that before being able to work on anything else, sensory and biological issues MUST be addressed. We've been frustrated that nearly all evaluations of our son have been done in quiet, kid-free areas so that his sensory problems are not as apparent.
(By the way, that our district has an autism team and that we speak directly with the head of it when we have questions is a large part of why we're committed to living where we are.)
"Then I'm happy and sad for you."
In non-movie-quoting seriousness, the most important thing I've learned thus far in SLP school is the importance of early intervention. You are doing right by your kid.
(uh, it's from Real Genius, circa 1980-something)
I've only posted to you one or two other times but I have to tell you, that my son is exactly, to a tee, exactly like Noah. The exact same issues, same meltdowns, same frustrations. Same speech problems with a sudden explosion. He's in the process of getting a reevaluation through the school too. It's so good to read along and find someone that is having the same issues I am and how you are dealing with it. Sometimes it helps to know you aren't all alone.
Your Noah posts make me cry.
Your Ez posts make my ovaries hurt.
Your feelings and your humor and your warmth make me want to give the parenting thing a try.
Thank you.
Well posted, and well done. Sounds like you're doing the best you can to do what's best for Noah. Keep it up. There's no such thing as too early to care about your child's development.
Huge congrats on a productive eval, even if it was pretty rough on you all. You're getting there. You're making progress. Noah is so lucky to have such engaged parents. I know you'll all come out of this fantastically one day.
And that was such a sweet note to your darling boy. He will cherish it one day.
Hugs to you all.
Amy, such a heartwrenching post. You should be so proud of your tireless efforts on behalf of Noah.
As a former teacher who used to hear parents exclaim in denial that their child could not read with responses like "He reads my mail to me, Gdammit" I know your belief in him and advocacy on his behalf is more important than anything else!
You're doing a great job! I remember feeling so many of the same worries and insecurities when Cordy was three and going through her first evaluation.
Now I'm stressing out at the thought of her medical diagnosis evaluation coming up the first weekend of May.
It's torture to go through these evaluations, but the unpleasantness lasts for only a few hours, and what you gain from it will last for his entire life. Giving Noah the tools he will need for success in life is the best thing you can do for him. It's not an easy path, but you're a fierce mom who is strong enough to handle it.
I want you to know that reading your site helped me decide to have my son evaluated. We struggled and struggled and we finally decided to seek help from someone who knows how his little brain works. You are brave, you're a good mom, and you're helping other people who might not have had the courage to find out the truth if they hadn't read your site and realized help is out there. So thanks.
My husband was sent to be evaluated for learning disorders when he couldn't SKIP, of all things, in gym class. Then they discovered he was basically an effing genius and he was immediately placed in "gifted child" classes, went on to become a National Merit Scholar, and is now kicking ass as an attorney. He was a cute little blond, just like your wonderful, loved, SMART Noah.
I babysit for a little boy who has many of the same quirks (and likely a similar diagnosis -- SPD right?) as Noah. He is 6 now, but I started with him when he was just about to turn 4. He started OT a few months later, and the improvement in his behavior, his relationships, his progress at school, etc. was remarkable. But I attribute half of the change to OT, and the other half to just growing up (increased emotional awareness, self-control etc.)
My point is: you're on the right path. Hang in there, and you'll find that both hard work AND time will do wonders.
Not at 14. People still say ONLY 14.
My son has some mild issues like sensory issues and some characteristics of Asperger's Syndrome, without a full range enough to get the diagnosis. After 9 years of public school failing him, and him failing miserably. I'm pulling him out of school. Yes, in April. I'm going to try homeschooling this amazing but yes, sometimes mysterious kid. I'm wondering if I can help him realize how smart he is.
When he was little, a lot of his behavior was deemed because he was ONLY three or four or ten. GO ON WITH YOUR BAD EARLY INTERVENTION SELF.
We could have used that instead of people saying he's fine.