A Belated Non-Update
Dirty Spoiled Rotten Scoundrel

Overload

A comment from mcewen, from a couple days ago:

I've just been reading some of your first posts from way back when. I wondered if you ever did too, just to see how much your life has changed?

I avoid my own archives like the plague, actually, since every time I go through old entries I cringe and get all delete-post-happy. But trust me, I know what you mean, and it does blow my mind sometimes.

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Especially since I still wouldn't change a thing.

I've gotten quite a few emails (politely) asking for more details regarding the squishy and mysterious "sensory issues" I keep dancing around. Everybody wants to compare notes. Everybody wants to know whether they should worry. What does your kid do; mine does this; our therapist said this but our doctor said that.

Here's the thing: I am not a doctor or an expert and in fact, have not yet read more than five pages of the book in that photo, and I read those in the aisle at Border's while Noah pitched a fit and the woman who was thumbing through What To Expect While You're Expecting stared at the book in my hands with this absolutely terrified, ashen look on her face. And then, true to Helen's words, I got all silently bent out of shape because WTF, LADY. MY KID ROCKS. MY KID COULD KICK YOUR ZYGOTE'S VESTIGIAL TAIL.

I've started entries about the symptoms of SPD that we see in Noah, but I end up deleting them. Partly because I've been talking about this stuff non-stop for like, a million years now and I keep waiting for the chance to change the damn subject already, and partly because it all sounds so TERRIBLE. Like life with Noah is such a STRUGGLE. Like we are constantly on the verge of an eardrum-shattering meltdown because of a string of blinking Christmas lights in a cheesy chain restaurant.

But yes, now that you mention it, Noah cannot stand blinking colored lights. We had an extremely unfortunate experience last week at a Moroccan restaurant when they very suddenly turned the lights down, fired up some pulsing beats and sent out a belly dancer. Then they turned on some multi-colored strobe lights and Noah started screaming. Not crying. Not fussing. Screaming. His face registered no emotion -- not fear, not sadness or pain -- but he screamed. Over. And. Over. I dove to remove him from the high chair and get him outside, but the instant I touched him he recoiled as if I'd slapped him.

And that's the sort of thing we're trying to muddle our way through. Trying to separate the "normal" terrible-not-quite-two behavior from the...well, the rest of it.

He hates walking barefoot in the backyard and will stay on the deck until I put his shoes on. When he was tiny and I'd place him on the grass he'd raise his chubby little legs up until he eventually toppled over. He goes up on his toes when he's on hard surfaces like wood and tile, but loves running barefoot on the scratchy carpet in the basement. Tags in clothing don't seem to bother him in the slightest, but when he's overwhelmed, the slightest touch causes him to cry out like he's in pain.

His pronunciation is bizarre -- if I mimic the movement of his mouth and tongue when he says "aball" I'm surprised at how hard he's working to get the correct sounds. He creates unintelligible nonsense words and then applies them consistently to objects with completely different-sounding names.

He loves patterns and order and prefers his toys lined up, end to end. He can say the letters in his name except for N, will hold up his fingers to count but can't say any of the numbers. He can identify pretty much any object in a picture book, but will simply shake his head no and push the book away if you ask him to name what he's pointing at.

I remember, a long LONG time ago, reading a blog about a child with SPD. For the life of me I cannot remember any of the details, except that I was not pregnant yet and thought the blogger's son sounded like a nightmare. Like the absolute worst-case scenario and wow, she's handling it so well but personally I would rather stab my eyeballs with the toothpick from my martini than deal with that kid all day.

Noah is still so much damn fun. It's hard to keep from chomping on him all day; he's just that delicious. As I finish up this entry he's making faces at himself in the mirror and cracking himself up.

Oh, wait. Now he's trying to ride the cat. Hang on.

His brain works. He's all there. I see glimmers of an amazingly smart kid.  I see the easy-going temperament that made his newborn days almost criminally easy bashing up against something that's keeping him tongue-tied. For now.

I see Noah, for now. I still wouldn't change a thing. He is perfection.

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I hope you see it too.

Comments

scattered mom

Wow. So many comments!

My son, who is now 11, has always had sensory issues (as well as my husband, who is 56).

There are times that have been really hard and frustrating, but I wouldn't trade him for any typical child in the world either because I love him just the way he is. Now that he's older and the sensory stuff is under control, things have just gotten so much easier. He has Dyspraxia, which comes with sensory issues, and learning disabilities.

I just wanted you to know that if you wanted to talk to anyone whose been there, you're welcome to pop into my blog and say hi. Anytime. :)

https://www.cookienotes.blogspot.com

Sara

Good grief, I can see why you are overwhelmed with information and input! But it looks like you are taking it in stride. I think you are just the parent to raise your cute, smart boy. Not everyone is invested in educating themselves; Noah is so lucky. By the way, my daughter didn't like the grass at 2 either, and really doesn't prefer loud noises and crazy lighting. I think it is important to look at all of the possible symptoms carefully. I try to remind myself that we, as adults, don't always come across as 'normal' -- we have our quirks and preferences. (Is this whole comment just so...obvious?)

Cassandra

Freakin' Cutey McBrown Eyes over here.
I love him to bits, and I don't even know him.

That's pretty damn special, considering my selfish 22 year old self who can't even fathom making people.

He's very special, Almighty Amalah, if he can make the girl who cringes around babies melt into a big puddle of want-a-baby goo.

Ms.Chievous

"Long time reader, first time commenter." Gah.
I've written 632 novellas in your comments since you first wrote about Noah's speech issues, and promptly deleted all of them before I posted them.
1-Because I noticed this isn't my blog.
2-Because of assvice issues. :o)
3-But I couldn't find your e-mail address. :-)

My 7 year old twin boy was diagnosed with Childhood Apraxia of Speech last year.
(BTW, huge resource, no matter the diagnosis, with a lot of basic info and support https://www.apraxia-kids.org/)
He's been seeing a speech language pathologist since he was three, and has seen a longer list of specialists than the yellow pages list.
He has struggled and will struggle.
He's not broken, he doesn't need to be fixed, he just has some issues to work on, like we all do. His are just on the outside and a bit more noticeable.
He's OK, even when the very narrow box label people think he isn't.
He just hears and produces sounds differently.
He was at the very top of his first grade class last spring in every area except spelling.
(now for the wee bit of assvice: We were told to start using sign language with him at a wee age, and it worked great! He caught on lightning fast, and just as fast realized that he didn't have to verbalize to get what he wanted and stopped talking completely. Signing was much easier than talking for him.
We ultimately had to ignore the very thing we had pushed him to learn.
And that. sucked. largely. with, major saline leakage and frustration on all parts.
Not trying to scare you, just want you to be aware of that side of signing.)
As far as the haircut goes? It was also an "issue" with my husband, because people always assumed our twins were a girl and a boy. Gawd I miss those ringlets... but I have them saved in a ziploc, because that's the special sort of freak I am.
The closing chapter of my novella :o) is that YOU are his best resource and advocate. You know him better than anyone else.
Noah, you ROCK. Max, RUN!

Chive

Of course Noah's perfect. How did he get this big a fan club otherwise?
And since when did needing a bit of extra help with something make anyone imperfect?

He's great. You know it, and he knows that you know it.

Nila

He is perfection personified. Those curls and that face, the spark in his eye says it all.

NG

Seems pretty perfect to me.

Kathy

I see it! He's adorable and so are you. Thank you for sharing your world!

Arwen

He is beautiful.

Arwen

P.S. I don't know much about the first two books on that pile, but number three is awesome and well worth reading.

emily

Amy,

Thank you, thank you for this post!! I know you must be sick of talking about it. Noah is perfection. We are going though the same thing. We are about a year ahead of you. I feel the same way. My son is perfection too. Thank you for sharing. Somtimes, the "issues" overshadow the joy and absolute amazment these kids bring. Not that there wont be hard days but my Carson is my perfect Carson. Just the way he is.

E

Diana

Absolute Perfection!

ktbug

Amalah - it has been a long time since I posted. We worked together long ago. One look into Noah's soulful eyes leaves NO doubt that he has much to say and is very bright. And sweet and kind and FUN. My son, getting ready to turn 7, was just diagnosed ADHD. He is not the throw a temper tantrum, drive you insane, bouncing off the walls kind of kid. But he can't stay focused on any one task (schoolwork!) for very long. His education is suffering as a result. We are in the midst of learning about this, which options to try and how we can make his environment at home and at school better suited so that he can reach his potential. For what it is worth - his IQ in testing was way up there, but his "executive functioning" was not. Your kid is fine. Your kid is beautiful, delicious and perfect. Your kid ROCKS! And so does mine! These are little individual humans and what your son or my son brings to the world, the lives of those who know and love him and his own forming dreams is and should be unique and different.
Parenting is not easy as we know. And so many of the things we hear and say sound SO cliche. But when you are in it - every day - words will never do it justice. Even as I try to find the words now to say in closing, just HOW MUCH LOVE I feel for my son...they just can't match what is in my heart.

honestyrain

my niece wouldn't have anything to do with grass on bare feet. or grass on any part of her skin. she would sit on the grass and if her legs and feet were bare she'd balance on her butt like some yoga maneuver.

Liz

he's too damn adorable! I want to say something positive about the SPD, but truth to be told, I don't know dick about it and so would come off as an ass if I did. a well-meaning ass, but an ass nonetheless. So just know I'm thinking positive thoughts and sending them your way. You gots a gorgeous, amazing little boy there, Amalah.

kr

I want to start by saying the pictures of Noah are so amzing,... it makes me want to take hundreds more of my two boys. Second I wanted to say I am reading a book called "How to raise a spirited child" and it talks about a lot of the issues you are having with Noah. It is another this to look at when you need some help coping with some of the issues that come up. I understand what you are saying about how wonderful Noah is and how fun it is to be his mom, but if you talk about this "thing" people will be all freaked out, and think what a nightmare --- and totally get all of that. But please do not forget this is different, and it can be very hard as a mom to just be a mom, not to mention the additional challenges you face .. but it is OK to say that --- and we will never think less of you or him for acknowledging that. It is a reality, and you will all learn how to adjust your life to this reality and make it work. Just like the child who is allergic to peanuts learns to never eat peanut butter. Allow yourself to feel some of the things we generally equate to negative things (but are as real as all the other things) -- you don't have to share that stuff here.. but share it with Jason, and let yourself say it out loud. All the best -- from a mother who knows how hard it can all be.

Lisa Marie

I know just what you mean, although I didn't always. When my friend's son was first diagnosed with autism and wrote "He's still our perfect son", I thought "She's just trying to convince herself." But when my son was pronounced "Speech & Gross Motor Delayed" I remember exactly the same feeling: that he's still absolutely, unequivocally the pick of the litter and he's the best most perfect boy I could ever hope for. And so f***ing funny I could barely contain myself most days. You still want to get him whatever help he needs, but it in no way diminishes the perfection that is Noah.

lissa

He is perfection. And he is your son and you love him with all your heart and it shows.

I know this might not seem like much but I am praying for him as well as for you. I can't pretend to know what you are going through but I do know that you have a lot of people behind you that are hoping for nothing but the best.

Amy

That was one of the most perfect posts I've ever read. The line "I see the easy-going temperament that made his newborn days almost criminally easy bashing up against something that's keeping him tongue-tied. For now." sums it up in a nutshell and I do see it now. He is a perfect, beautiful, to-die-for kid and his parents are the same. Thanks for making it so clear to someone who isn't experiencing it, but has just had a light bulb go on. I learned something new today - does that mean I can go home now???????

Aleks

Amy,
my son who is now 11 has SID (sensory integration Disorder). He was finally diagnosed at 4 but showed symptoms as early as 1, I just never recongnized them since he was my first child.

Since then I have kicked myself for not getting him checked out sooner. When diagnosed he was 26 months delayed on speech and 23 months delayed on fine motor skills, 18 months delayed on gross motor skills. He had huge issues with food texture, walking on grass sent him screaming, etc.

He was in PT, OT and speech for several years and on an IEP for several years once school started.

He is now graduated from all those program and only has one sound issue left: the R's. He is a wonderful, sweet, sensative, emotional boy and I love him just the way he is.

My middle son also had some fine motor issues and my youngest has a defiance disorder and an anxiety disorder along with some sensory issues.

None of that makes my kids worse than "normal" kids. They are my kids and they're great.

I've been going through all this stuff for about 7 years now so if you ever need to talk or vent feel free to email me. And the Out-of-Sync child is an excellent book!

Heather

It's unmistakable! He is amazing :)

And I just wanted to second Alicia's comment above. I couldn't have said it better myself.

Lisa

My brother is autistic (please don't think I'm reading this and diagnosing Noah, I am sibling, not an expert) and I always get stupid comments like "Oh and you love him anyway. It's like it's no big deal to you." Billy is still pretty cool despite the tough stuff. His unique personality is endlessly fascinating and often very, very fun. When Billy laughs and is happy, and it's pretty often, the world lights up like it's on fire.

gail

I agree that most of us have sensory issues. I have a lot of food aversions directly related to the textures of food. As a speech-language pathologist I can honestly say most of my clients have at least some mild sensory issues. I don't believe kids grow out of them as much as they learn to "deal" with them. Also, when he has his speech eval don't forget to mention the part about his articulation seeming like it's a struggle. Maybe there is a motor planning component to the problem, like verbal apraxia.

Jam

Noah is a beautiful child; regardless of any obstacles he may face he has the love of his family and that is infallible.

My son too, when he was a toddler hated grass and refused to walk barefoot on it. He would wear holes in his blankets because he rubbed them between his thumb and index. He took all the canned goods out of the pantry and lined them up in distinct curved pattern according to size when he was about 12 months old. He kept all his toy cars in one straight line across his bedroom floor and got very frustrated if they were out of place. As a 3-4 year old he made intricate lego sculptures (cars, planes, spaceships) all perfectly symmetrical including colors and block shape.

10 years later he’s an intelligent and wickedly funny. He has challenges using the bathroom in time and 9 times out of 10 his shirt is on backwards but we have in depth conversations about evolution vs. creationism and why people fall out of love. His mind is fascinating to me. I am so grateful to have a person like him in my life.

You are so lucky to have a child like Noah. While the challenges may frustrate you now; the talents he has will blow you away for years to come.

Amanda

I totally see it. Thanks for sharing all of this, Amy.

suitep

He sounds brilliant to me.

And so beautiful. He's exactly how he should be. He's Noah.

*love*

Fraulein N

I know we all see it. I also see your love for him in every post you write about him, even when you're describing some difficulty he's having.

AlieMalie

I'm sure Noah will be fine. The cat, however, definitely going to need some help. "Am I a horse? Am I a donkey? Am I a cat? How can I be a cat and be ridden?" Yes, I can definitely see issues for the cat.

Caroline

Through the tears in my eyes, I see it. I definitely see it, too.

andrea

Amalah,
I thought for a long time if i was going to comment or not. As i read your entry i cringed, it brought back so many memories. It was so much like my brother austin it was scary. Althougth Austin was worse at that age in some ways for instance he didn't want to be touched by anyone. But the lights, the meltdowns, speech, touching grass, etc was so simliar.

I'm really glad you are getting him tested early. Without early intervention Austin would be so much worse off. Even now he's in a special program at high school for high function austism/non-violent behavior disorders(in MC at Churchill great program btw) & still goes to therapy etc to help him.

I dont want to scare you since the general comments re: all he'll be fine etc. And i really hope that for you. But if he won't be i can promise he will be a joy in your life no matter what. He might need a little extra attension but he'll be the heart of your family. I as the oldest sibling will be my brothers guardian one day. i look to it as a great opperuntity not something i dread or am sad about becuase he can bring a joy and view of the world that no one else has. No matter the result of all the test, i'm sure Noah will be the same for your family.

Jen

God, that kid is Gobbelicious.

sarah

I love him.

cate

Noah is exactly who he should be and he's wonderful! No matter what help he needs, he's a star!

Stimey

I can totally identify with this. I wrote something similar a while back. Before I had kids, or when my first was younger, "autism" was the scariest word I could think of. Now that I have a child whom I firmly believe will eventually be diagnosed autistic, it doesn't sound so bad. The scariest thing I could think of now is not having my adorable, wonderful, sweet boy.

And do work the system when you get him evaluated. My guy performed really well when he had five grown women concentrating on him. Based on that evaluation he wouldn't have gotten any services. Based on the psychologist's observations of him in school, he qualified.

Good luck.

nora

My heavens, I love your blog. Thanks for your honest sharing of life with N.

ta

Not to be the wierdest mom on the comment line -- even though it seems to come so naturally to me... I was just wondering about Noah's sensitivities. I have a three year old boy who started out EXTREMELY serious (and I was worried), and then he become sort of silly (relief!) but then he started reacting to noises in ways that I found startling (alarm, again!) AND (and this is the part where you press the delete button...) he started reacting to the paintings in our house by saying they were "too loud," or they "just waked up..." He (apparently) can tell when the paintings are 'sleeping,' and he can hear them when they wake up and start making noise. One of the paintings that he finds most alarming makes a hideous noise (he tried to make the noise for us and frankly, I wanted to move out of the house and just leave the art behind....).

Anyway, my point is not to weird you out, or out wierd you, but I just wondered if Noah might just have a different... feel for the world? My son is really quite brilliant, and so funny and... very much a unique little person, but I know he just senses the world in a way that the rest of us usually can't.

It is easy to become nuerotic these days -- I think it's in the water-- and there may be something genuinely 'different' about Noah... but maybe that's a good thing, or even, a GREAT thing. Maybe he is the next evolution of our species and maybe we shouldn't try to make all these strange, new little people fit into our crazy old molds. (Er... is it moulds? Hmmm...)

Okay. I'm sorry. I went on and on. Love your wit and sentiments...

starrynite

Gorgeous! There are no other words!

Cara

We see it. Because you show us all of it - the good, the bad and the tantrumy.

DQ

An angel.

pam

I think I am like number 140 or something and everyone else had said all the good stuff -- so "ditto." Your son is adorable, you and your husband are great parents, and this, too, shall pass. That sounds (reads?) so trite, but ... I'm trying to say that it's all a crap shoot when you're raising kids, and you just have to hope that every day you're doing the right thing, and the fact that you even recognized any of Noah's traits (I refuse to call them "issues") and are proactively doing something proves what a great parent you are. Hug him for me, okay? (I still want to be his babysitter....:)

Ang

I think your readers all love Noah, too! We see it!

BOSSY

Hang in there kiddos. Bossy is plugging for all of you.

Karianna

Noah is a perfectly adorable little boy with so much potential.

Vigilance, open-mindedness, and recognizing that You Are The Mom in the face of medical professionals who make snap-judgments will take you far.

Your flexibility and concern will be the greatest gifts Noah has ever received.

Haley-O

And, he's absolutely gorgeous. Wow....

amanda

Better than a perfect, and on another post, the one about his hair. I'd like to request your permission to contact Benjamin Moore or Valspar and creat a color called, "Grinning Noah" because seriously, he is like bottled sunlight.

brighton

Chuckie Cheese makes me scream in an uncontrollable way.
I CANNOT walk barefoot outside- if I try I almost walk in the air for running inside so fast.
I am weird about my food, certain textures make me gag.
In short, I am an adult with sensory issues and I'm really ok. (well, not when I'm at Chuckie Cheese)
Your little guy will be ok too- Just because of the wonderful parents he has. That you worry and stress is a good thing : )

MMM

He's so precious!

Amy

Noah is the perfect Noah.

Just remember that.

BTW, a-freakin-dorable pic!

the bee

No matter what happens he is still perfect. I would not change anything about Matthew. Never.
Noah is amazing and a beauty. YOu are a great mom - the bee

psumommy

Not only is he beautiful and perfect (That hair! those eyes! Those cheeks!)...but he has a fabulous mommy, too! Many hugs to you, Amalah. I'm guessing that by writing about what's going on with you, you're helping a lot of other mothers- and fathers- deal with similar issues. It always helps to know you're not alone, ya know?

Randi

I really hope you never cut that hair. I think you should tell people you're Kabbalahists (is that a word? holy crap it is a word- I just googled it) and you don't cut his hair until at least 3 years old.

jsdcreative

He's gorgeous and precious, and perfect.

A close friend has a son with PPD, and she started with early intervention when he was about 2. He still has many many issues, some of which will be lifelong, but he is a wonderful little boy who is so tremendously personable and loving, a child who brings a glow to the heart of everyone who meets him.

My oldest son is going on 9 now, and I am finally getting him some help for mild SPD. I believed he was borderline for so many years and that we could deal with it, and now I'm wishing I had done something earlier. He's managed in most ways but the last year of school has been exceptionally hard for him - he's an extremely bright boy but with an extremely low frustration tolerance.

You're doing the right thing. I wish you all the best with it.

Becki

I'm sorry, ma'am, but your child has exceeded the maximum allowable level of cuteness for one child. I'm afraid I'll have to take him into custody for further observation. There won't be blinking lights, but there will definitely be cookies.

Laurel

I read your page often but have not commented yet. I just wanted to say, that something like this may seem horrible--but it isn't. I had a very similar sensory problem (and still do for a fact) that didn't get diagnosed until I was 6 years old. I am 21 years old now, and even though it has made things a little tougher in life, I have ended up a much stronger and perseverent person. I was able to overcome this "problem" and succeed (I go to college across country and I am going to graduate with honors), and I am sure your son will do this too. I wish you all the luck.

EmmaLouise

While I've never met you two in person, I've known Noah through your blog since he was the size of a pencil eraser. As far as I'm concerned, he's perfect. May hugs to you both.

Heather B.

If I say that I do see perfection, is that completely biased?

I'll be back in 4 weeks and my, lord, I miss y'all.

(I've been in OK for several days, so excuse the mandatory use of 'y'all')

Meg

This made me cry and smile at the same time, Amy. I don't know you, but I know you and your family will be much, much better than okay.

I just feel that this is the case.

Imrgmab

So a not even 2 year old baby screams in a suddenly darkened restaurant that now has loud music and blinking lights and a belly dancer. I think it would be more abnormal for said child NOT to scream.

Rose

Noah is so precious, precious, precious. Does it bother you to think that you're sharing his growth from conception onwards with complete strangers? I feel honoured, like we're sharing in the special joy you two have. And no kid is the same as others. In ten years time you'll look back and think, 'Why the hell would I have wanted Noah not to have SPD? He's special and gorgeous and precious and he wouldn't be the amazing kid he is now if he hadn't been though the stuff back then.' And it's true. He is precious, precious, precious, and a very lucky kid to have two parents who so absolutely adore him and don't hesitate to pour that adoration all over him. And not in a sticky, sickly way either. In a gorgeous way :) I pray for you both all the time. God bless x

warcrygirl

Wow that sounds so familiar. Jr was similar to what you just described except I couldn't get shoes on his feet until he was 2 or so and his fave thing when he was tired or upset was to put his hand up my sleeve and caress the back of my upper arm. He even did that to his teachers when he was in preschool. Everything was "Eee!" nad he did line up his cars and such but he doesn't do that anymore. If any part of his school day was different from the norm he would have a fit. Now? He's completely normal in every way; if his routine is disrupted he knows that it will return the next day and he's fine (unless it's something he doesn't want to do and well, that just normal kid stuff right there). He still hates gooey or sticky on his hands but it doesn't disrupt or impede his education. He's an uber-picky eater and socially awkward (sp?) at times but unless I mention this to someone new they don't even notice.

I didn't coddle him and eventually he learned what behaviors were expected and which ones weren't and he's every bit as perfect as Noah is. If anyone else can't see the perfection in Noah then they can go fuck themselves. Just sayin'.

Bonnie

Every time I read one of those developmental milestone charts I get that sick feeling - am I doing enough for my baby? If he's lagging, is it my fault? How come he's not saying mama yet? But honestly, just a little smile for him is a reminder that he's just fine. It makes me wonder if we're over-analyzing our kids, you know? I mean, would my mum or my grandma ever be concerned, or would they just chill out? Am I a lazy mum for even thinking that?
Anyway, just wanted to say that I get it, and I think you're doing awesome. Just look at that face!

Whimsi

He's smarter than I was at that age. Or so my mom says. Affectionately of course. He's going to be a righteously awesome kid and adult. Never fear.

Ro

Awwwww, Noah is precious!

I have a friend whos son has SPD. He is a happy (most of the time), fun 8 year old boy who goes to regular public school, though he's in a special needs class because his speech is a little jumbled he is mainstreamed half the day and you know what? He's normal.

People right away think what you said... like waiting for the bomb to go off with a child with SPD but its not quite like that. By the time Noah (or any child) with SPD reaches my friends son's age you kinda know what will set him off and you avoid those things.

*Kisses and hugs to Noah*! :)

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