I Should Not Be Left In Charge Of Houseplants, Much Less Babies
Off To a Good Start

Beyond It

It occurred to me that I never wrote about our orientation night at Noah's summer camp from a couple weeks ago. Perhaps I initially decided that it was a boring topic that no one cared about. Perhaps I was more than likely right. But camp starts on Monday and I JUST finished filling out all the case history forms and permission slips and assorted release forms this morning, so needless to say, I've got Occupational Therapy Camp on the brain in a big way.

The camp is nice. The camp will be nice. There are three motor skills gyms, a 1:1 ratio between therapists and children and two field trips to a therapeutic pony farm. Every Friday is Water Day, with inflatable pools and sprinkler toys. Noah will have a blast, and hopefully we'll see some real steps forward. Jason was thrilled and pronounced the expense officially more than worth it -- a fucking bargain, were his exact words, I think. I agree. 

Of course, me being the big fat stupid pessimist who wore the wrong shoes and had a headache that was totally probably brain cancer had to go and get overly sensitive and philosophical as we wandered the halls of the facility -- a facility that is primarily used as a special needs elementary and high school for children with high-functioning autism and other speech/motor/sensory problems. I wondered if these students had been through Early Intervention. If they'd gone to special summer camps and exhausted the district's offerings. I wondered if they had, and if this was still the result, costly non-mainstream tuition, worries about college and afterwards, a label that stuck. Our goal had once been "regular" preschool; now we're pinning our hopes on kindergarten. I wondered if these families had similar goals once, and still ended up here.

It looked like any school, complete with lockers and bulletin boards and posters documenting the students' activities and achievements. The photos on these posters were mostly boys, much older than Noah, and...I guess because I KNEW, I couldn't just look at the photos. I saw it. You know? I saw the eyes looking at the camera but not quite focusing. The bodies standing next to each other but without any touching, without any arms slung around each other's shoulders, without the natural ease that comes from knowing the boundaries of your own body and how it relates to the person next to you. I saw slumped shoulders, defensive posture, splayed fingers, low muscle tone, protruding tongues, an endless checklist of stuff I've read about and occasionally witnessed myself.

I was deeply ashamed to realize that I saw all that stuff before I saw the boys, the children, the other people's precious chubby-cheeked babies.

Jason chided me the other day for interpreting almost everything Noah does these days through the filter of his sensory problems. He couldn't just be scared of the flying house in Up. He couldn't just be worried that all the balloons would pop and the house would crash. No, I fretted over his rigid thinking, his terror over the slightest change in routine and things Not Being Exactly Just So All The Time, and the force of his reaction and the volume of his shrieks and on and on it went and I went until Jason suggested that I take a break from all that reading and researching and compulsion to know more! and fix more! and advocate and educate and on and on and etc!

At our IEP meeting, when Jason and I started talking about all the different tactics we've tried to help strengthen Noah's skills in certain areas, the occupational therapist suggested that we could maaaaybe start relaxing now. We could let the experts handle things and get back to the business of simply enjoying our child. I just stifled a snort because LEAVE SHIT TO THE EXPERTS? AS IF THERE ARE ANY EXPERTS. HA HA. EXPERTS. THAT'S A GOOD ONE. The importance of being part of your child's therapy is undeniable -- YOU know your child best, YOU are there day in and day out, YOU have more of an impact than 45 minutes of therapy a week. YOU. YOU YOUYOUYOU. Don't forget that, don't slack off. And don't fuck it up.

This is..a tremendous amount of pressure, particularly when you're talking about your firstborn, when you feel like such a goddamn ROOKIE about even the simplest thing. Noah has completely shattered my expectations of what motherhood would be like. He has both humbled and enriched me. He has given me a greater sense of purpose but also the occasional feeling of drowning in my own inadequacy.

(And a tendency towards overwrought metaphor, apparently. Yeesh.)

One of the things I am guilty of is keeping a List. It's in my head, though I've occasionally rattled off a few choice items to Jason and my mom and in imaginary blog postings that I compose while brushing my teeth, before I have coffee and think better of it. The List is the answer to a question that no one has ever asked me.

Do you think Ezra is...you know...the same?

The List is evidence that no, I don't think so. From his early back-and-forth conversational coos and strong preference for me, to his fascination with Baby Faces books and joyful interest in other people. He babbled at people instead of inanimate objects. Ezra loved the feel of grass beneath his legs and between his fingers -- Noah simply raised his legs up away from it until he toppled over. Ezra eats anything and everything -- Noah's textural issues were already becoming apparent by this age. Ezra does not appear to be as sensitive to music and sounds, but does complain when his diaper is wet or when he is cold. Ezra waves and claps and mimics certain noises and facial expressions -- the very first official warning flags we saw at Noah's 12-month appointment when he couldn't do any of that. The List is long, very precise, with dozens of little moments that I've filed away for reassurance later.

But again, Jason has (rightly) pointed out, it's not fair to suddenly look back and sweep every memory of Noah's babyhood -- every personality trait and preference for different books, everything that we once celebrated as being part of our "exceptional" baby -- under the rug of SID/SPD and the looming Spectrum. It's not very fair to Ezra, either, to observe him strictly through that lens, hovering over him with a checklist in hand, breathing a sigh of relief every time he acts "normal" or "typical," instead of just viewing the differences as just that: Two. Freaking. Different. Children. My. God.

It was a bad night, that orientation night, because I realized that more and more, I only saw it. I was losing sight of my own baby, my child, my amazingly smart, sweet Noah, and letting his quirks and issues and my worries and fears for his future cloud over the son.

***

This week there was no school, no camp, no playdates or birthday parties or anything we had to do. We rarely got dressed, Noah watched TV whenever he asked nicely, dragged as many toys into the living room as he wanted, and ate macaroni & cheese for lunch pretty much every day. If he asked for white milk in a red cup and the red cup was dirty, I rinsed out the red cup rather than engage him in an argument about the blue cup. We cuddled and tickled and roughhoused. We made a big happy birthday banner for Jason using fingerpaints. He asked for a napkin after every other paint streak, and I gave him as many napkins as he wanted. When we were all done, we hung it on the front door. 

It remains pretty much the only thing we accomplished all week. And I feel pretty good about that. Camp starts on Monday; this week was a week to enjoy being with my boys, my beautifully different, equally essential boys, a brief vacation from it.

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Comments

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

I went to go post a comment on your last post and you snuck this one up while I was clicking! Sneaky.
I was going to say "Dude, how did Ezra get under your bed? Don't you have like a wedding dress box, three pillows, 14 shoes, and a million dust bunnies under there? Or is that just us?"
But now I have to say:
Well duh you got all wrapped up in it. The system failed you, dumped you, and left you alone to deal with it.
With luck this camp is going to work out so well that you're going to feel supported again and you're going to be able to hand off some of the burden to the so called experts and you're going to be able to enjoy your boys more for just who they are and not what they aren't.
(Also, in our house it's the pink cup, not the red one, because preschoolers are preschoolers no matter where they fall on the "normal" scale.)

Liss

Now you are freaking me out because today was our first OT appointment because Caroline is still not sitting up on her own and does not wave or clap or mimic and will not. eat. ANYthing. And is pretty much the same age as Ezra.

And I have spent the four hours since the OT left pretty much crying because my baby? She is happy and smiles and loves to play with my face and loves the baby faces books and she's perfect just because she is MY BABY.

I thought I had sort of figured out this mommy thing with the first one, but then the second one has to go and be all different and unique, and so now I realize I know nothing after all. I have never had a job before where I worked my ass off for 3 1/2 years and still felt inadequate on a regular basis, and yet here we are.

Suzy Q

Love that sign on the door. So sweet.

jodifur

Oh Amy.

What a lovely, heartbreaking, honest, beautiful, post this is.

I looked at that school for daycare for Michael. They run a "normal" daycare. And I know exactly what you are talking about it.

I just want to hug you and tell you it is going to be ok.

LPC

Chalk this up to random Internet noise and I would understand. But I'm a 52-year old Ivy League educated (for whatever that's worth) overly verbal woman. And the flying house in Up terrified me. More possible random Internet noise - from where I sit in front of my computer screen, your boy is clearly a chubby-cheeked darling of someone. Your blog is lovely.

Parsing Nonsense

A beautiful post. I'm so glad you have the wisdom to check yourself every once in awhile. It's a lovely thing to read about how much you enjoy your children.

Caroline

I just want to give you a hug and a martini. This must be so overwhelming.

Bratty Brenda

You are an amazing woman but more so an amazing Mother. When you feel like there are dark clouds looming above your head, remember in the eyes of your boys, you are everything and anything.

It's true.

Hillary

Sounds like a lovely week. I hope Noah has a fabulous time at camp.

Mouse

One of things I discovered in my hours of internet research--because sometimes I just soak in "it"--is that kids on the spectrum are disproportionately first-borns (and then 4th or later borns). So this issue is frequently dumped in the laps of rookie parents. In our experience, we were told "all babies develop at different rates" for two years from the time we brought up any issues.

On the other hand, I appreciate our OT, who has said on occasion, "Sometimes these things we read as symptoms of being on the spectrum are just personality traits." It's a reminder that whether or not his quirks are frequently seen in kids on the spectrum, there's a level at which he's just our kid and this is just who he is.

Karishma

i think every post you write on this subject is just better and better than the last. seriously. i star all of them, but then y'know, i realize the star function is of not much use if you star EVERYTHING. this was beautiful, and all of it so very, very true. your children are beautiful, and you are fantastic parents who love them so much i could cry just reading about it. noah sounds like he's on the right track, finally, and you are doing such a wonderful job advocating for him.

Tamara

In a very similar situation to you. I was/am thrilled that the second born in typical, and yes, also worry a lot about my feelings towards the typical one (and the giant relief) and the amount of energy the first takes. It's a struggle.

On the topic of losing sight of your Child.... my husband and I both attempt to take the older one out for one-on-one fun parent time. No therapy, no trying to get things done: just pure simple fun. It's surprisingly hard to do... but well worth the effort to just try for a few hours to put all the crap aside and enjoy time with your kiddo.

Good luck with all!

Karishma

also, how awesome that he worked with the finger paints! whatever, so he used a lot of napkins, but he did it!

Sprite's Keeper

Sounds like Noah will have a blast at camp and that's what matters most, right? Thinking positive thoughts for you and a happy birthday to Jason!

Jill

I think your reactions are perfectly normal. I saw my mother go through the same process with my baby brother. I will see my sister go through them with her daughter.

Kids who are currently high/middle school ages did not have the same kind of technology and access for early intervention that Noah has, so they probably did not receive that advantage.

lisa

I'm so glad you had a nice relaxed week - It must be so hard to be measuring all the time.

I hope the instruction by the occupational therapist to just relax was an invitation, not a criticism - in the past the teachers seem to have been taking you to task when Noah had trouble. I don't think this is your filter coloring things because I have witnessed the same thing with my cousins' kids - the very serious and stern accusatory comments levied upon pickup when junior did not perform properly that day.

Anyway, I hope the people at the camp will treat you like a partner and not a subordinate and that this will be a place where Noah can relax and have fun experiencing new things.

sabre

Amy, we are living parallel lives. My almost 4 year old was just diagnosed as high functioning autistic, orginally had the diagnosis of SPD. And when his little brother was born, I spent a lot of time watching him to make sure he didn't have the same issues Anthony did when he was born. They were completely different and now that he's nearly two I've stopped paying attention it's all good.

I mirror a lot of your feelings and thoughts, I'm just not as good at expressing them. Thank you for sharing...

chiquita

Aww, Amy, of course you want to fix it! that's what moms do. But it sounds like you were able to relax and enjoy the week, kudos to you. And that is an awesome banner.

She Likes Purple

What's inspirational -- atop all the other things you say/do that are inspirational -- is how you and Jason seem like such a team through it all. That's really something.

Jean

That was an amazing and beautiful post. Sounds like you had the perfect week :) That sign is one for the collection of things to keep from childhood.

Suzanne

How I wish you didn't have to 'get it' about all these things.

Our first IEP, my mantra was "Mainstream, Mainstream, Mainstream" You know what? You've already figured it out, that what you want may not be what's best for Noah. So you're adapting.

My 13 year old, brilliant, beautiful son with the alphabet soup of issues is in an intensive school program. They say it's short term, but I am a realist. I know my son well, they don't. Yet. There was a time when this would have really upset me, but now, the important thing is that my son is progressing emotionally and socially as well as he's done on his own academically. Maybe someday, the high IQ will not be so disparate with his emotional level.

Odds are great that your sons will be like mine, as different as night and day. It sure seems like whatever Neil got shortchanged on, Kevin has an extra helping. Empathy and congeniality-advantage Kevin. Analytical skills and passion for reading-advantage Neil. The good thing is that they learn from each other.

I am sure this summer camp will be wonderful for Noah.

Melissa

I think this might be your best post ever. Heartbreaking, yes, but so beautifully written.

anymommy

I totally lurk here, but I had to say that I loved this post so much. Such honesty and though I know you are dealing with specific concerns, it's so applicable to any siblings. Thanks.

Kim

My son's "thing" was different, for a while there he would hit and push his classmates, not listen to his teacher, run around and around. I started to only see the behaviors, worrying about how he was acting, whether it was about to turn into aggressive behavior again.

Then he had a gym class teacher who knew his issues but was still able to see him in a way I couldn't. She saw how smart he was, listened to his stories and truly enjoyed him. It was a revelation for me and really helped me to get back to enjoying my son. She also knew how to deal with his behaviors. My hero.

Michelle

I also had the mental list with my second child and always felt guilty about it. BUT. It was helpful beyond measure to see my 2nd child (totally typical) doing a lot of the things we worried so much about with my son that we thought for SURE were signs of autism or what ever label was being thrown at him that day! He is 4 now and absolutely fine! He has outgrown any possible diagnosis he once may have had and we have realized that he is who he is and sometimes it really is just age and personality...not everything has to be labeled or diagnosed.

Nosaby

I haven't been blessed with children, but I do know that you are a voice for 1000's of worried parents, and you do it beautifully.

Also, I totally want to go that camp. Sounds like a blast.

Lilacspecs

This is a breathtaking post. You are an amazingly honest, accountable, and wonderful woman and mother to your boys.

Kathy

I'm thinking about having Friday Water Day at my house, too... because, hello! AWESOME!

A nice, relaxing week at home is just the thing before awesome, exciting camp. Good call.

Tawnya

I think you are an amazing person. The way you've handled all the curve balls that have been thrown your way is truly inspiring. Keep your head up, and a smile on your face. Noah will be just fine. :)

stass

Sigh. I read your posts and remember feeling the same way and want to be able to fast forward you through the hard parts like this. But I don't have that power so :(

Here comes some ass-vice I sought out a therapist that specializes in kids on the spectrum (or whatever) and instead of treating my son I went to talk about how hard it is as the mommy. It helped me. :)

dcfullest

For some reason, I thought of this after reading your post-- maybe I am just projecting far too much, but I want to say it, in case it helps.
After struggling for years with infertility, we finally saw a RE. Finally, it was in their hands, I no longer had to spend every day peeing on ovulation prediction sticks, taking my damn temperature, "demanding" sex right then because I was ovulating. They could deal with all of it and we could go back to being married-- which it challenging in its own way. I hadn't realized how much it effected every aspect of our life and just completely overwelmed us.
I hope this camp will in some way become the same relief for you-- you can get a break from focusing on the problem and just be parent again.

Jill

A beautiful week. Your boys are precious.

*m*

It's very easy to attribute every pain-in-the-ass quirk and behavior to, as you say, the looming Spectrum. When my high-functioning son was in kindergarten, his aide told me several times, "You know, he's more normal than not. A lot of 5-year-old boys ____ " (fill blank with whatever trait was freaking me out at the moment).

The one good thing about having your child in school is getting perspective from people who see and know a range of kids. As moms, it's so hard for us not to overanalyze and obsess over every little behavior.

I agree with Jason -- this summer program sounds great.

And I've said it before but will say it again -- Noah is SO YOUNG. My now-12 year old kicks ass. I wish I could have seen into the future when he was Noah's age.

Have faith, in him and yourself.

Heidi

You're an awesome mom, you know that? You *really* are.

Traci

I love your blog. I've only commented a few times, but I'm always lurking :) I so enjoy your writing.
Here's what draws me: I am a social worker, working in the schools, teaching social skills to children not unlike Noah, and also to some who are very unlike Noah. One of the reasons I love your blog so much is that it gives a really honest parent's perspective on what it's like to go through this whole process. Your words ring in my ears during IEP meetings when someone says "oh, leave it to the EXPERTS, you relax!"

Thanks to you and your willingness to be so vulnerable to the blogosphere, I can approach parents I work with with more humility and humanity. I can never totally understand what your life is like as a parent, but you do a damn good job at making me a better social worker.
Thanks

JoAnn

Amy,
Your thoughts and feelings are so perfectly expressed. I read this and nodded my head in agreement the whole time. My son who is in 1st grade is having some struggles in school. Not exactly the same as Noah, but we know there is 'something" -we just don't know what. Socially he is great, but academically he is struggling even though he can learn the material. So we are wading in the waters you are and while you manage to capture my feelings and put them into words every time you post about Noah and your feelings towards "it", I sit back and realize I am feeling those very same things. It is so hard- but we will figure it out and our kids will be just fine. Just know- that I totally and completely get it. And if I knew you in real life I think we'd be great friends!

me in honolulu

I feel for you lady! We've been there with our Noah and he too is our first. You are his best advocate - always remember that! We too are making progress... go with your gut and enjoy the little things.

Monica

Sometimes I just can't face reading these entries because they are just so familiar. Except I have no list in my head because it's kind of like my brain can't go there - it can't think about the things I might have missed or the things I should be doing. And it most certainly can't think about what it will be like sending my baby to kindergarten in a few short months. It's as if that part of my brain is shut off and locked away so tightly that when I access it for even a second, I panic and it immediately goes away once again. IEP meetings are brutal -- having your kid reduced to standard deviations and labels and "deficiencies" makes me feel like running away and never returning. The constant pressure from the OTs and the PTs to work on this and do this and try this overwhelm me.

I would love not to see "it" but the closer we get to sending him to kindergarten, the more I panic because even if I don't see it, everyone else certainly will.

Ugh. This turned into such a downer. I'm sorry. I appreciate your honesty so much -- even though it breaks my heart.

Lisa

OK, tearing up here officially now. Amy, I just love the way you write about all this hard stuff - so eloquent, so loving. I think you are doing a great job of seeing Noah...not the issues, but the awesome kid. Sounds like you're keeping focused on the important stuff. Can also totally relate to sighs of relief over "good" signs in next baby, then feeling guilty about that.

Mary

Our second baby is still a newborn (7 1/2 weeks) and I DO look for ways that he is different than our older son (who is on the autism spectrum). I hate that I do it... but I do.

I once told a feeding therapist who was pushing us to force the J-man to try new things that she saw him for 45 minutes twice a week, and we had to live with him the rest of the time. Sometimes you just do what you have to do to get through the day, and that may or may not involve "therapy" at home!

Adventures In Babywearing

I'm newer here so I am not sure of your Noah's background but I have a firstborn Noah, too, who set a very scary confusing bar for me and his later siblings. I spent my second son's first two years a nervous wreck watching for signs. I get it.

Steph

Jenny

My girl has low tone and sensory issues but doesn't qualify for EI. We do have her in OT though. This week we found out we have to start to see a child phsycologist for anger management issues related to the sensory. And I like you am thinking everything now is related to sensory stuff.

Tracey

Ridiculously well written and downright inspirational post.

Karen

My ds just started a summer program too and his new teacher is fantastic and told us she believes he is typical. She's the first one to say so, ever. (his last teacher did nothing but check off red flags) And just like that, the IEP and everything melted away because she sees his positives and that he's smart and wonderful and unique. He's had no problems with her and loves going to school. I hope you find someone like Beth who looks for Noah's strengths and works with his weaknesses. I know Noah isn't going to be like the children on the poster. You won't let that happen. That is why he's at this camp and one day you'll laugh at all of the worry and labels. He's getting there but it's harder to see the improvements when the areas you want to make better are screaming at you. I know...I do it and have to remind myself to stop and just enjoy him. The right school does make that possible and I think you've found it. Thinking about you all. ( I knew you already wondered about EZ. What loving, caring mom wouldn't wonder? You have been to hell and back and don't want Noah to be fighting this let alone EZ too.) Ezra will have his own traits but he sounds like he's skipping past the "red flags". There is nothing you can do now but you know if something doesn't seem right - you know how to reach EI...and get things moving.

Kristin

It sounds like a perfectly wonderful week...just enjoying your boys.

Kristen

Thank you, thank you for writing with such brutal honesty. I don't know if you realize how many mothers feel exactly the same way and how helpful it is to read your words. I could relate to every aspect of your post, especially the way IT takes over, and how easy it is to compare with younger sibs.

Britt

Man. Between your blog and your columns over at AlphaMom, I really (erroneously) feel like I know you. The funny, pretty you who has had hair issues and has figured out how to apply the perfect eye and the mom you who's dealing with all the "normal" toddler crap Plus. If what you write is even a 45% accurate picture of what's in your heart, you're a truly outstanding woman.

Cris

Oh, God. The List. I totally have one, too, but mine is not quite so reassuring as yours. My husband has a 13 year old daughter who is severely autistic with profound mental retardation. Non-verbal. Not potty trained. He and I now have a little girl, Elena, who is a couple days younger than Ezra, and I've kept the same list. She loves to stare at people, but doesn't usually smile at strangers. Loves all food, but shrieks if you put her on top of a blanket on the grass. Loves for you to sing to her, but cries a sad, pathetic cry when a particular song comes on her Mozart cube. Took a looong time to coo and just said "dadadada" for the first time last week. Can wave at people, but can't imitate facial expressions or sounds. Has asymmetric movements and can't seem to figure out the crawling thing. I'm terrified, but can't mention it to anyone because everyone pats me on the head and tells me not to overreact.

This is my first and probably only baby, so I'm savoring it, especially these early times when strangers come up to tell me what a beautiful, well-behaved quiet baby I have. I'm savoring her "normalness" and trying to quietly prepare myself (and her) for a time when she maybe she won't be considered normal.

Kyla

God, I've imagined how hard this would be. In a way I'm glad KayTar was the second born, because I know BubTar is "normal"...I don't have to wait and guess and keep The List for him. I know, with certainty, I would do the same thing if she had a younger sibling. It would be hard not to ask for an entire medical workup, MRIs, ABRs, lab work...the whole shebang, at birth with another one...just so we'd KNOW. Ugh.

You're doing just fine, Amy. You and Noah, both.

Stacy

The future can wait while you take care of the now and love your boys and do your very best for them. And your best has been pretty impressive thus far.

Development is a journey, not a linear path. And you're doing it just fine.

Candcae

You *are* in it. You will be for a while. It's just the nature of the beast. But rest assured, there are experts. There really are. And it sounds like you've found the ones who can help you. Let them help you.

I'm 12 years into parenting a child with sensory issues and severe ADHD, with some spectrum issues as well. I promise you, it gets better. It really, really does. Noah seems so very similar to my boy at that age. If someone had told me then how different things would be now, I would have laughed in their face. But I'm telling you, things will be different when he's 12. Things will be better. You're making sure of that by getting him help now.

kelly

Wow, this is so thoughtful, and honest, and beautifully written. Thank you so much for sharing this with us.

jenn

Of course you have these concerns, and of course you compare the boys. We ALL compare our kids, even though we know we shouldn't. I think you did a marvelous thing, just by being able to unplug this week and relax with them. That's such a spectacularly hard thing to do, especially with kids that age. Brava, Amy. You're doing great, and so is Noah. What an amazing support system he has in you and Jason.

Crystal

totally unrelated to your post, but...
On Tuesday I was reading a tweet from you (the one about ghee) on my bb as I walked down my back step (duh!) I fell. I broke my ankle in three places. I've since had surgery with two plates and numerous screws. I'd say it's all your fault, but well, I should have been watching where I was walking.

Just thought you should know what sort of impact *hee* you've had on me :-)

Crystal

Helen

Whenever I Read your posts about Noah I can't decide whether I feel bad that it never occured to me to worry that ISaac didn't say a word until he was 4 1/2 or if I am glad that I didn't. He is my 5th child, you think I'd have had clue, the thing is, I adored him just as he was, when it was pointed out to me that
" Ahem, your kid is SO freaky!" and all the 'experts' became involved, I was quite adament that they not try to 'fix' this glorious boy. It didnt matter to me if he was ever the same as every other kid, if he grew up to work on computers in a room on his own and was happy..so be it.
I nagged everyone that wanted to mend him and told them that their job ( And mine) was to help him be more of who he is, to learn how to get by in this world and love being in it..his way.
I have been so blessed with a school that was behind me, he is now 7, nearly 8, is in main stream school and not once, ever have they tried to make him do whate everyone else does. IF he needs to sit outside the classroom and watch until HE feels safe enough to creep in unnoticed..he can do that. If he can only manage to be 'director' of the school play and hide behind a screen with a clipboard so no-one can see him...that's his job and he is praised for it.
He has been at school for 3 years, the first 2 sports days he refused even to wear his P.E kit, last year he wore the clothes, didn't move....no way could he be 'seen' by all those parents. This year, we saw him walk onto the field in his P.E kit...then we saw him get into line OMG in FRONT OF THAT CROWD!!!! And I had the most enormous lump in my throat because LOOK......OH sweet joy he is actually going to RUN...with the cheering and take a look....he is the one on the end, in long shorts and black socks pulled up as high as they can go, a bean bag on his head...the one that WINS THE RACE!! And he grinned when the whole place went crazy!!
http://www.myquietthoughts.blogspot.com/
I keep saying it but Noah ( and every child that 'experts' want to 'fix') is perfect as he is. Bloody well perfect.

Wendy

I'm the mother of a mentally and physically disabled child (22q deletion syndrome, Google it) and I know first hand how you can caught up in the education and the advocacy and the blah blah blah MUST HEAL MY CHILD thing.

However.

These kids are more than their labels, more than their issues, more than their physical or mental handicaps.

They are our hearts.

And we are better people because of them.

Pam

So beautifully written. I have a friend who has a child with autism and she is the most amazing, funny, strong woman I have ever met. I believe everything happens for a reason. And you are meant to be your son's mom and his greatest champion.

Jennifer

I'm a long-time lurker who loves reading your posts and just wanted to chime in with my story. My almost-7 year old son was finally diagnosed last year as high functioning autistic, after several years of an SPD diagnosis. Like you, it was agonizing for me to go through the journey of obsessive internet research and mental checklists, then testing through schools and private OTs, psychologists, and so forth, but it was a very happy day when we got his official diagnosis. For some reason, I finally felt free of the worry and the guilt - "a-ha! now we know what it is and we can move on." Ever since, it's been much easier for me to just enjoy him for who he is, and focus less on his quirks. We have lots of interventions in place for him, he's doing great, and I feel much less stressed and worried than I did two years ago. It's hard, but it does get better once you get it all figured out! Noah seems like a great kid, and things will only get easier as he develops and continues to get the support he needs.

Olga

hi, Amy.
Let's go into business and make "the big fat stupid pessimist" tshirts! They will sell like hot cakes. Seriously!

Hope the camp goes well.

Wacky Mommy

Amy, I appreciate your writing and your honesty so much. You guys are all lucky to have each other. Hope Noah enjoys the camp -- it sounds good.

MommyNamedApril

Sounds like a wonderful week. I'm sure Noah will love camp and I hope he thrives :-)

martha

Sounds like an awesome week to me.

We all do the comparing of our own kids. It is really hard not to. It is differences and similarities and looking for the family tie, mostly. Not all bad. Even the reassuring "whew..glad he isn't doing THAT" is not bad.

You are raising individuals who will be who they will be with all the love you have for them inside their hearts.

Karen

My kids, ages 3 and almost 6, with no known sensory issues, both freaked out at UP (both the balloons and the dogs), too, while their similar-aged cousins sat there and laughed. I thought it was because mine are girls. Or more compassionate, or something. (I bawled my eyes out at the first 15 minutes.) So, there you go.

Also, I am finishing my counseling degree and do assessments (far too short assessments) with parents of young 'uns having issues (often including sensory ones) and reading you has given more greater sensitivity to what they're going through. Which, as a parent, I should totally get, but I'm all into my assessment mode and thinking about labels and services, and sometimes that gets lost. So, keep up your beautiful writing for all of us!

Barb

Noah and Ezra are very lucky. Very luck indeed. Go Mom!

Chris

good god
so bloody sweet
you made me shed a tear. a TEAR. i'm a fully grown bloke. emotional stuntage. i'm a frikkin DOCTOR.
i hope you're proud of yourself.
whatever. keep up the good mumming & dadding.

Fairly Odd Mother

I truly hope this summer camp is everything you wish for Noah and that he adores every day.

I also thought of him when I saw Up, probably one of the most terrifying movies I've seen in quite a few years. I am not kidding when I say that I spent half the movie watching it from between my fingers. I can't even think of that little house on the side of the cliff without wincing. They need to up the rating on that flick.

MsCellania

OF COURSE you do all the stuff you're doing. You are new to It.
Pretty soon you'll be less reactive to It, I promise:
Therapy sessions? 3 times a week, so what?
Special Ed, ST, OT, PT and Psych qualifying segments on the IEP? "Does he qualify for more time for any of these?" slips out of your mouth so casually, you almost drop your teeth thinking of it later that night.
Special meetings with primary teacher, SpEd teacher, ST, OT, literacy teacher, etc? You look forward to them.
All of the above happens because these professionals, these teachers, LOVE your child. They are truly excited for his gains and accomplishments. When you show interest, they can barely shut up about your child.
Yup, the professionals will cradle Noah in good hands.
I promise.
It has happened again and again for us.

kate

I always read, and never post, but had to post on this one. I have a fair amount of experience watching dozens of kids grow from little to big. My own philosophy is that people are all on a spectrum, and that all toddlers display aspects of OCD and sensory integration disorder.
My daughter--who is Noah's age and whom no one thinks had any type of developmental issue--has gone through LONG phases where she cannot tolerate the bath (afraid of water in eyes); she suffers daily trauma getting dressed (afraid of shirt over the head); is afraid of hair dryers and other things that make noise; took months to get up her nerve to go on a carousel and refuses any sort of bouncy castle or trampoline; etc, etc.
I can tell you about another child who hid under the table with hands over his ears whenever he got upset -- he's now on full scholarship at a good university. And another who had terrible raging tantrums -- and is now in a very good PhD program, and an utterly delightful person. A third child who was afraid of finger-painting, who is on full scholarship at med school now.
Their brains are still developing, they have too many synapses firing, not enough myelination (I spelled that wrong, I'm sure) of the synapses, and not enough life experience to put it all in context. I'm not saying you shouldn't do everything you can to make sure Noah gets all the services you need, but remember that he's only 3--and for 3 year olds, acting odd is totally normal.
So don't worry too much.

ladybughugs

I'm sure the system is better now than it was 10-15 years ago when those children were Noah's age. You are doing all the right things given the information that is available (their parents didn't have the internet at their fingertips for research the way you do).

With you behind him Noah will grow up to be happy and healthy and will use the gifts that God gave him to be the best Noah he can be. You have 14 or so years of battles and advocating before you, pace yourself. You're doing great! You're not sweeping anything under the rug or ignoring signs and symptoms or making excuses.

Oh, and my Lil'bug got anxious about the house in UP, too, so I think THAT may be a NORMAL 3-1/2 yo response.

You have grown since I first started reading your blog. Noah has made you stronger and more confident. That is awesome!

Nicole

This was a really, really lovely post. I'm a faithful reader (read: lurker), and think of you often now that I'm parenting my own gorgeous 7-month old girl. You are an awesome mom, and your remarkable care for and joy in your children is inspirational.

amber

Beautiful. Absolutely beautiful.

roo

"He has both humbled and enriched me. He has given me a greater sense of purpose but also the occasional feeling of drowning in my own inadequacy."

Gulp..will you please get OUT OF MY HEAD dear lady.

Oh..the stories I could tell....but instead...just this..I HEAR YOU and I wish I could hug you I'm there with you RIGHT NEXT to you!!

Respect to you and yours..and the work (love) to come.
Roo

lisa

Amy, you are Noah's mother of course you are going to worry, you are a momma bear it's your job. Everything about Noah will matter more to you than ANYone else in this entire world! You have done an excellent job being diligent and searching for answers for "it"!I hope when I have children I am half of what you are. I get tears in my eyes whenever I read one of your posts about how you and Jason are trying to help Noah, and think wow what wonderful parents that cute little boy has! And as a mother of course you will worry about Ez too. It's your job you are MOMMA BEAR!!

Jeanette

Noah is who Noah is. It's great that you let him function in his comfort zone this past week instead of pushing him too much (ie., the red cup vs. the blue, giving him the papertowels).

With all of your love and understanding and the OT camp be ready for some very positive changes in your little guy.

Brooks

Goddamn IT tends to sneak into your brain when you least expect to see IT. IT never goes away, but IT can be put on a shelf if you reach just high enough. Your post was beautiful. Enjoy the lazy days.

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