So Many Entries to Write, and Yet I Give You This
Six Months

Evaluation Nation

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

Comments

alayna

Hang in there, Amy! Sounds like a pretty hellacious day for sure. You're a great mom! Being a mom is hands-down the hardest job on earth! If only we didn't care so much, maybe it would be easier! But since that ain't likely to happen, just know I'll be praying for you & Noah and your whole family and that one day soon, Noah and all of you will be at peace (God, that sounds like you were dead! I don't mean dead!) but just happy! This post reminds me to not be too quick to judge when I see other kids acting out. Although, I will say, I don't think I have actually judged like that since I had my first kid. I do know I will never, ever, ever say, "My kids will NEVER act like that!" I think GOd takes it as a persoanl challenge to make sure they do if I say that. I hope that this time you've got some good therapists that will work with you and help Noah to make strides. And, last thing I'll say is, good for you for listening to your instincts and getting Noah some help when you knew he needed it, even if he was ONLY 2!

Karen

I think someday Noah's going to say something like this:

Dear Mommy:

I love you, too. You were the best Mommy anyone could ever ask for, and I know you and Daddy always did what was best for me. I'm now 21, and I've become a fantastic young man. Let's go for a beer.

leigh

Bravo Amy!!! You are doing a fantastic job of being mommy and don't let anyone tell you different! Noah is VERY LUCKY to have you for a mom!

Anonymous

Amy,
You are so right about the age thing.
When I was younger, my middle brother always acted as he shouldn't. Me, being the older sibling always felt it was unfair given I had rules I had to follow...
My mom and his dad (not the best parents and I should have my own blog), but thier response was always the same- "he's only ___ years old." From the time he was two years old, until he was 12. 12!!!! Even I realized there was something not right. Now he is 22 and due to lack of parenting and allowing "institutions" to try and parent him, the poor kid is criminal.

SO yes, he is only three. AND YOU ARE DOING EVERYTHING RIGHT. If only all parents could be as dedicated (as they should!) this world would be a better place.

Best wishes. You guys are going to be great. Those kids are LOVED and it shows.

Vicki

Congrats on the process of evaluation. You are a champion for your child and he will benefit for it 10 fold! You are doing a great job and so is Noah! It pays to be persistant.

Kim

That letter to him is just spectacular. He's gonna make it because of you. Your a fantastic mother and he is incredibly fortunate to be in your care. Pop open a Moscato and lean your head on Jason's chest. You're going in the right direction and there is progress. We're all so proud of you for doing the hard thing now to get to the good stuff soon.

SassyPants

I don't comment here often because you Amalah and I am well... someone totally not famous. It's intimidating when I want to say something but eleventy billion people have already commented and SURELY someone (or 30) has already said what I'm thinking and said it much more eloquently than I ever could.

but, But, BUT I am speaking up this time. I will be heard this time.

Not only is Noah too amazing for this world, but you two are amazing parents. I have been following you through this journey since the beginning and I am always in awe with the honesty with which you lay everything out there - with your willingness to be completely bare with the joy and the hurt that comes with having an extraordinary child. And I am livid each time I see or hear about someone who tears you down for it. So, for what it's worth as a comment from the peanut gallery, anyone who tells you that you are over-reacting or not doing it right or giving you crap in way shape or form, they can just Get The Hell OUT! Parenting is hard work. We all do it with as much grace and dedication as possible. There is no right answer. There is no perfect model. But you are the perfect parents for your wonderful boys and I feel honored to be a part of it simply by being able to read your stories.

cyndiblock

my kid split the atom at three oh and did our taxes right before she rebuilt the engine on our car. What the hell is wrong with your kid??
In reality: She sat in her own poop AT THREE for hours because it just felt so damn good. She really did do our taxes though

Anna Marie

You are such a good mom! I'm so glad you were able to find experts that are willing to help so that Noah can use that amazing brain of his to the fullest advantage.

Laural

We're going through this too, and I can so relate to being the parent in the waiting room with the kid who isn't sitting quietly.
But that's good.
I've known since Matt was 2 that *something* was up. He just turned 5 and finally people are agreeing. So, we've had 3 years of people trying to discipline him their own way and it not working.
Early Intervention is amazing - and I've pushed and it's helping.
Also, if you haven't read "the explosive child" you should. It has an amazing way of explaining how kids feel. It made me understand Matt so much better. It won't diagnose anything for you - but I cried when I read it.

Perri

Have you been on the "OASIS" website? My daughter is 9, it took years for me to get to the root of some issues and others....well it's just a matter of time and teaching various coping skills. So not an easy road. I boobed and pushed for school - in hindsight keeping her home longer would have been better - live and learn. All you can do is love and be proactive, which you obviously are! Great diagnostic teams at Children's Hosp. in DC & Ffx - takes months to get in but worth the wait!

Lesley and Parker

I've been reading your blog for YEARS, but I've never left a comment.
Everything you say/write about your awesome son is the truth.
My little guy (20 months old) had a stroke the day after he was born. We do OT, PT, Early Intervention and Cranial Sacral Osteopathy. It's hard. It turns your world upside down. It destroys you. You're bitter, angry, frustrated, heart broken, negative...shall I go on? But guess what? One day, little by little, you begin to be ok. No, normal is gone, but it gets better. I don't know when or how, but it DOES get better. And the all of a sudden, you don't see this kid who is different. You begin to meet a child who is really and truly different, in the most mind blowing, awesome way!
My son is perfect, he's very, very smart, reserved, funny as hell and the sweetest boy you've ever met. Like Noah, he can charm the pants of anyone! Amy, if I could go back and change things, I wouldn't, because then he wouldn't be my Parker. He's beating the odds, and I know that down the line, he'll be just fine. You're doing all the right things. We're not bad moms! We're wonderful moms, and that's all because of these amazing kids that we're lucky enough to mother!!!!

Sarah @ BecomingSarah.com

I wish I could come through the computer screen and give both of you a big hug.

And after that, I'd come through and give those "ONLY" people a slap.

Reluctant Housewife

God Amalah, You are such a great mom. I love that you so dedicated and how you fight for your little boy. He's lucky to have you for a mom. And you're lucky too to have such a sweet, lovely, interesting little guy there. Two of them, actually.

I'm sorry it was so hard. I'm happy he's on the road to getting the help he needs and that you want him to have.

Stick with it, you're doing great. I'm sorry it's not easier for you and for him.

hugs.

Deanna

Amy, you're doing just great! Keep it up.

LibbyD

Your beautiful boys are SO lucky to have you as a mom. I know it feels like a mysterious, up-hill battle, but it really seems like you're on the right track. Keep the faith, sister.

Laura

I've been there and could have written this entry. It gets better. Trust me. Maybe we have adapted more, maybe our son has developed more and maybe the therapy is working but believe me when I tell you IT GETS BETTER. I too have wanted to smack the "He's only ..." people, especially when they make you doubt yourself. They aren't the ones who have to hear from the teachers, or other parents, or the nagging little voice in the back of the mind that says something isn't right. My son is in OT/ST and his sensory issues and speech are great. Yeah, he still has his bad days at school but we're getting him in a social skills camp this summer.I kick myself for not recognizing his issues sooner, especially since I had worked in Education for 10 years prior to his birth. I really kick myself when I realize we would have found out that my oldest had special needs if he was actually our second child because our second child shows us what we missed with our oldest. (Did that make any sense?) When I get down on myself for not being the perfect parent and not helping my oldest sooner I then realize that I am not perfect and my woulda, shoulda, couldas don't matter. What matters is my little 4 1/2 (that half is important to him) is a wonderful, hilarious, amazing kid who just has a few kinks to work out. And if anyone else has a problem with that THEY can take him to therapy and THEY can see what he is like without help. It has been a LONG road but things are getting better. They will get better for you as well.

mpotter

you absolutely are doing the right thing in being so proactive. i'm glad you had a somewhat positive experience with some pleasant results peppered in.

i'm glad he'll be reevaluated. it sounds like you have the right people in your corner.

Stacy

And you made me cry. Check.

Like education, development is a process. A non-linear process. You're in the process and that's what matters.

Pulling for you!

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