Noah update

I really can't even begin to tell you guys how amazing Noah has been doing lately. And this has a little to do with my blog quietness. He's just so BUSY. He wants attention 95% of the day, and honestly, after trying so long to get him interested in being social? I don't mind one bit. He doesn't just want me around. He wants to play games with me, jump on the trampoline, give me kisses, have me tickle him, sing songs... it's just so amazing.

 

(he thinks it's hilarious when we take turns spitting water out at each other)

His vocabulary is taking off like crazy. He can now tell me what he wants regularly. Earlier tonight, he looked at me and asked for, "Cheese"... enunciated perfectly. He's making correct associations. Pictures aren't always necessary. I can say, "Okay, we have to go bye-bye", and he will respond with, "Shoes on!" While shopping at Target, he will clearly ask for "cookies", "cwackers", "apple", "Na-na", or my personal favorite "gweeps" (grapes).
He's now pretending to go potty. He'll sit on the potty, with his clothes on, and say "Potty". Needless to say, I think it's time. We're heading to Lowes soon to get one of those fancy dual toilet topper things, because he's too big for both of the potties we've bought already.

If he wants me to jump with him, he signs jump. He can say slide, swing, and outside. He can tell me if he wants to watch "George", "Tos" (Thomas), or "Tiguh" (Daniel Tiger's Neighborhood).
He does a TON of scripting, which is where he recites favorite clips from shows he watches. Sometimes it takes me a little while to figure out what he's reciting, which is kind of fun. :)

One of his favorite phrases is "Oh no, makin' a mess!" Wonder where he got that from?? (<-- sarcasm font).

Seriously, I'm not even sure I can remember everything he says. Words are just flying out of his mouth now. And so much credit goes to his speech therapist we've had since June. She's tough on him, but so awesome. I tell her all of the time that I know she doesn't always get to hear how much he says when we're with her (because she's making him talk vs him offering it up on his own), but that all of her hard work is showing up at home.

Speaking of his therapists....

He made them cry Tuesday.
Like tears streaming down their faces crying. I had told them a few times how he could sing and sign "Jesus Loves Me", and they finally got to see it. His OT felt it the most I think though, because she's been with him for over a year now.
She saw him when he barely acknowledged our existence. She was with him when he didn't even respond to his name. She knew him when his vocabulary was less than 10 words. So as he sat in front of me, concentrating very hard on following the signs and attempting to enunciate every word, she just couldn't hold it back.

He's come so very far in such a short amount of time.

And then she proclaimed for the second time in two weeks that she's convinced I will be a speech therapist or OT one day. haha. I just told her that the only reason anything I try ends up working is because he's mine. I know how he thinks, what makes him laugh, how to motivate him, when to push him, when to hold back. And really, he's such an amazing kid. I always worry people think I want a ton of praise when I brag on Noah. Because really, it's all him. His personality is just so sweet and silly and bubbly. I would love to live in his world for a day. It seems like a very happy place. :)

In the pictures above, you can see his OT on the horse swing with him. That woman, you guys. She has been a Godsend. She has worked for the past year on building his muscle tone, increasing awareness of his own body, and other sensory issues he's had. And because of her?

This is happening...

I know it probably doesn't look like a big deal, but I've been waiting for the big kid swing transition for a long time. He just didn't have enough core strength to hold himself steady. Now I can walk away, and he stays put, totally happy to hang on.

He had his (very late) well check on Monday. He's 48.8 lbs and 3'7" tall. So 97th percentile in weight, and 94th in height. Told y'all he's a big kid.

We saw a new pediatrician, and he is absolutely amazing. Amazing doesn't begin to describe it honestly. He was able to get a "high five" from Noah when he walked in. He's patient and calm, and I know Noah senses that. I don't feel rushed when I ask him questions. When I explained how the last ped labeled Noah as obese, his eyes got wide and he responded calmly, "That seems a bit presumptuous to label him at age 3". He went on and on about how, yes, Noah is a bigger kid. But that he's clearly healthy. We'll obviously need to watch what his weight does as time goes on, but as of right now, he's fine. He explained how kids on the spectrum are almost never in the middle... they're usually on the skinny side or heavy side. That for reasons doctors aren't fully aware of yet, their metabolisms are different and could be because of any number of things (including being low tone). When talking nutrition, he recommended going to Earth fare. Earth fare!! And to see if I can get him to eat tofu since he doesn't like meat.

And then as we were talking, he said words that were music to my ears. He said the words, "He seems pretty high functioning to me."
Noah's diagnosis says he's severe. I'm pretty sure it was so he could qualify for more services through the state, however hearing a medical professional confirm what you already hope in your heart is true? Cue happy dance.

Socially, he's doing so so well. He loves attention. We've gone to a couple of bigger parties lately, where other kids were there, and he was right in the middle of the action the whole time. At one point, his friend Jackson was wanting to ride in this little push car thing. Noah wanted to ride it too, but I told him he had to wait, that it was Jackson's turn. So he proceeded to push Jackson all around the yard instead. I couldn't believe it. No tantrum. Nothing. Just "okay, then I'll just push him"...

I'll stop here, because I know I'm just gushing at this point.
I guess we're just in a really good place right now, and it has me all kinds of excited at the moment. Had you asked me last year if this is where I thought we'd be? I would've been doubtful. I honestly had no idea what to expect. So yeah, I can barely contain myself when I get going on everything Noah has been doing lately.

I just love this kid so much I could squish him.

where we've been

Unintentional blogging breaks are both good and bad. Good, because it means I'm out doing (hopefully) fun things... spending time with my family and friends, booking more work, therapy, trips to the beach, and just getting outside.

Worst slide ever...

Love  family (and boyfriends) that are totally cool to play with Noah the way he loves to play. :)

 Blog breaks are also kind of bad though, because I miss what's going on with my bloggy buds.

......

Noah's therapies at the school have begun again. I'm still not thrilled with his OT. She's a nice girl, but she's kind of clueless.
Like last week? She had this sudden epiphany that "he seems to really like pressure on his back".

<insert me trying to control my "are you kidding me" expression>

Um... yeah. We had that figured out about a year ago. And she got her start in physical therapy. She should know this stuff. But whatever. She's free.
He has a new school speech therapist this year, and she seems really nice. According to his private SLP (who is AMAZING), she's fresh from the farm (aka. school), which explains why she seemed really excited to get to work with Noah. She's not even certified yet. She sweet thing isn't jaded yet from our crappy school system. haha.

To get an idea of how bad our schools are... Angie, our private SLP, is the best speech therapist we've ever encountered (*ahem* IRL, bc we love our online SLP bud Gina). She's amazing and in the two months she's had Noah, he's saying more than he ever has. Not when she's present of course, because they have a major love/hate relationship. But at home? The boy is talking so so much (mostly scripting, meaning he's repeating clips to shows). She remembers kids from previous years at school, to the point where if one happens to walk into the therapy clinic, she runs to give them a hug.
She's the reason Noah's sleep has improved. Like insanely better. Like he's asleep before midnight and up before 9am. <insert angels singing hallelujah chorus>

Because she's awesome, you would think the schools would be so thankful to have her. But not our schools. She's already warned me not to mention her name to them. That it may have the opposite result of what I would want. lol. The reason? She advocates for the kids. She fights to get them GOOD services, more therapy time, and more therapists. I love her, and the fact that even she has to fight for these kids only solidifies my decision for Noah's school (again, more on that later).

...

Noah now knows his ABC's. He's obsessed with letters now, so I got him some of those awful refrigerator magnets that will probably be crammed underneath the fridge before too long. But since putting them up, he's made me sing the alphabet song 5348503945 times. If I stop mid-song, he'll say whatever letter I've landed on, which is how I test what he's retaining. It's pretty awesome. And his "Du-ooo" ("W") is adorable. I stop on that one almost every time, just to hear him say it. haha

...

Now to go catch up on my blogs!
Happy Monday!

advocacy

This walk of special needs parenting is an interesting one.

I realized today, looking back on the last year, that once you get that official diagnosis? The learning curve is insanely steep, both for the kid and for the parents. Especially for the parents.

It's just not something most people even consider when they have kids. When you have a baby, you kind of assume everything's going to be fine. I mean, obviously every kid has their own challenges. But for the most part, major developmental issues aren't really on a typical parent's radar.

This last year has brought a lot of learning for us. Words like "low tone", "neurotypical", "joint compressions", "vestibular input", and so on... had zero meaning to us. We went from being the parents of a cute toddler to being advocates of a child with autism.

The logistics of helping Noah are just the tip of the iceberg. Nobody prepared me for the emotional roller coaster.  Watching all the other kids at the park play together while your sweet boy wanders around alone? Or having kids, younger than him, ask me why he doesn't talk? It's like a punch in the stomach. I want so badly to make this world work for him. It's getting better, due to so many kids being diagnosed. But it's still a constant worry in the back of my mind.

Then there are the battles. Fighting for your child against the people who are supposed to be on his side. I'm so thankful for the therapists that are good. That get attached to their kids and love them wholeheartedly. That spend their off time researching and learning. Who find the words, "I love you" spontaneously come out when talking to my little boy. The ones who offer encouragement, new ideas, and advice... knowing we're all on the same team? They're the ones I will always thank God for.
But when the school's speech therapist says she wants to combine three therapists into a closet of a room and work with Noah at the same time for 30 minutes? That's when I have a hard time trusting people's judgement. As if that's even enough time for one therapist. Or like one of my friend whose child's teacher didn't remember what grade he was supposed to be in. Things like that make you both nervous and defensive.

I'm having to make a tough phone call this year. It's my very first, and I hope it'll be my last. Last year, I was concerned about the OT the school assigned to Noah. We pay privately for an OT, and that woman has become like family to us. This other girl though? Oh my word. It's sad. She and Noah just didn't click. They didn't understand each other. I wish I'd spoken up last year and requested a different one, but I kept hoping it would improve. He has her again this year. I mentioned the issue with his private OT and SLP. The SLP kind of side-eyed me and asked, "Is it -----?" (taking her name out, just in case). I couldn't believe it. Apparently, this OT has a reputation of not connecting to her students well. She's a very nice person, which makes this call so hard for me. I'm a people pleaser by nature, and I hate to offend anyone. But I have to stand up for my kid and try to find a better alternative.

I don't really know where this post is going. Just say a prayer for me as I try to figure this out. I hate upsetting people, but in the end, I can't spend another year regretting my decision to continue with this particular therapist.

blog therapy (alternate title: who is THIS kid?!)

Most of the stories and pictures I share about Noah are happy ones. And to be honest, there really are a lot of these kinds of days...

Days where he's happy, smiley, and oozes sweetness. He's always been sweet. Aside from those first couple months of colic, he was all smiles, coos, and giggles 99% of the time.

 

 

Friday was not one of those days though.

Things went from bad to worse, starting with what was supposed to be a fun family outing. We went to pick out new shoes for me (I realized I hadn't gotten new running shoes since Christmas, and that may be why my knee and big toe have been hurting like crazy). I already knew it would be testing Noah taking him there, so I tried to make a decision as quickly as possible. Brad did really well watching Noah. Unfortunately, Noah didn't understand why he couldn't run up and down the aisles like he used to when he was a lot smaller. Brad would tell him "no", and I could hear the whining, followed by a dead-weight Noah falling to the floor. People look, we ignore them, and Noah can't figure out why we're being mean.

 

There's a pet store near the shoe store, so I tried to remedy the situation by letting him look at the animals... especially the fish. Dude loves fish. Figures he'd love the least social animal in there. lol.

 

Anyway, Noah was already annoyed with Brad. So when Brad told him not to touch the water, Noah turned around and told Brad to go away. He kept waving his arm for Brad to go away until Brad disappeared down an aisle. I happened to think it was hilarious.

We stayed there for a good half hour, just watching all of the fish. When we decided it was time to go, Noah wasn't having it. Cue lots of fussing and dead weight again. Brad had to carry him out like a football. The kid is a good 45 lbs at least. And tall.

 

We had to go to the grocery store, which I should've known would be a mistake since it wasn't Target (where his Starbucks barista girlfriend saves him some pumpkin bread). He was hungry (even after two freebie cookies) and spotted his favorite... Lays potato chips. He zeroes in on those bright yellow bags. I got him the snack size, and we tried to ring it up at the self checkout... which of course wasn't working. I told him to "wait", which is his least favorite word ever. Cue whining and fussing again. Finally, we got him his chips, and things got better. Except that our nerves were wearing thin and we still didn't know what to do for dinner.

 

I asked Brad what he wanted, and he informed me that he was driving to McD's, whether I approved or not. haha. Again, I tried to compensate for a crappy day, so I asked Brad to order Noah a vanilla cone. I handed it to Noah, and he proceeded to just hold it. Didn't eat it. Just let it sit there and melt in his hand. So I reached back to grab it from him, just to lick around it so it wouldn't melt all over his hands. He didn't want to give it up, even though he wasn't eating it. So when I went to grab it, he squeezed the bottom, causing it to break in half. So here I was holding a melting top to an ice cream cone.

 

We made it home in piece (albeit sticky).

 

Me, being ever the optimist, decided we needed to take a time out. Go for a walk. We put Noah in his wagon and walked around the neighborhood. It's part of our little summer evening routine, and it never fails to lift our moods. It really was a nice break.

 

Until we got home. Brad went to get something out of his car. Noah was with him. Noah proceeded to shut his fingers in the door. Kid was screaming.

 

Thankfully, because Noah was the one that shut it, it wasn't a hard shut. His fingers aren't even bruised, but I know it hurt.

 

The pain made him angry. Brad was trying to put ice on it, while I attempted to comfort him. Because that's what moms do. Every time we said, "It's okay", he only escalated. As if to say, "What the flip are you talking about, it's most definitely NOT OKAY!"  I tried doing the deep pressure occupational therapy techniques to help him calm down. It usually works, and that's what we're supposed to do. Well, Noah wasn't having it.

He hauled off and smacked me.

 

My sweet, happy, smiley baby boy... who until this week hasn't hit anyone ever... hit me.

 

That did it. I couldn't take any more. I broke down into sobs.

I can put up with a lot. A lot a lot. I can handle my kid never calling me "Momma". Ever. I can handle the fact that he doesn't really have friends (nor does he care). I can handle that I'm still having to change my very large 4 yr old's diapers that he's outgrowing. I can handle that I'm constantly making two meals for dinner, because he's such a picky eater. I can handle that my son can't tell me what he's thinking or feeling. What he understands and what he doesn't. I can handle the onslaught of opinions about how to parent and help my son. I can handle running him around to therapy after therapy, in hopes that one day all of this will add up and result in a high-functioning ASD person. I can even handle tantrums... they really don't bother me that much, because I refuse to indulge them.

 

But having my naturally tender-hearted boy, who I do so freaking much for, turn around and smack me when I'm trying to comfort him? Yeah, that was too much. I can't handle that.

 

Frankly, I think it's okay to admit when something is too much. Parenting a special needs kid requires putting on a brave face every day. Not letting the struggles dig their way into your heart and make you resentful. Allowing God to step in and give you the strength to deal with all of the extras that come along with this particular call in life.

I totally understand why he hit me. It had nothing to do with me in particular. His fingers hurt, it made him mad, and this was his only way to communicate his anger and frustration. It made him feel better to lash out.

 

I adore my baby. Our days are almost always good. This is just a blip compared to the big picture. But sometimes it helps to write it out. Get some blog therapy. In my case, I had to get it out, so I can move on and celebrate my baby's birthday this week.

 

Here's hoping for a few days of no tantrums and lots of fun. :)

 

A mini Noah update

Every day, Noah turns more and more into a typical toddler. Now that he's on a routine and better sleep schedule, he's no longer constantly sleep deprived. Which means he wakes up and wants to do stuff. Like be pulled in a wagon in 90+ degree heat.

Or play in the car...

Or eat paper...



Or explore in the garage...

 

Or bake cookies...

 

 

And then throw the cookies...

 

 

 

Seriously, by the end of the day, I'm exhausted. It's a good kind of exhausted though.

He's also making his preferences known more. Last night, he absolutely did not want to wear his Thomas pj pants. However, he was cool with wearing comfy shorts. I guess the pants were making him too hot at night?

And oh the tantrums.
For the first time in his entire almost-4-years of existence, he shoved someone when he got mad. He was cranky (he actually was sleep deprived yesterday), and his speech therapist was making him work for his goldfish crackers. He knew they were in her lap, so he reached for them instead of doing what she asked first. Of course, she didn't give him one, and he pushed her a little. My sweet, tender-hearted little boy who makes people laugh because his tantrums are so mild... shoved someone. Speech therapists will do that to ya though. haha. I swear she makes that little brain of his do more work than he ever has before. It's uncomfortable for him.

But oh my goodness, she has done more for him in the last month than the public school therapist was able to do for him the entire year. It makes me want to cry and hug her neck. And also be angry at our local school system for being so crappy... to the teachers, therapists, and kids. Seriously, our area's schools are awful. But I won't get into that here. We'll just leave it at, "My kid will not be attending them." ;)

We've been working on waiting recently. Noah, being autistic and an only child, absolutely loathes the word "wait". He's getting much better though. He'll get annoyed at first, then look intently in our eyes and repeat, "wait!"

Or if we tell him to clean up, he'll respond with "wait!" haha.

I can't believe he's turning 4 next week. It's just too soon. It's gone too fast. We've got a lot of celebrating to do this weekend, starting tonight with "uncle" Chase coming back into town. And hopefully some 4 yr birthday pictures squeezed in there too.

Have a great weekend!

when hard work starts to pay off

Noah's special ed teacher texted me last week, asking if I'd be willing to answer some interview questions about special needs parenting for a college course she's taking over the summer. Most of them dealt with how we found out about Noah's issues, the challenges/accomplishments we've faced, etc. As I was filling them out, I was picturing Noah over a year ago. He's always been a sweet, happy little kid. For a kid with ASD, he's always been surprisingly social. He loves attention. But the toddler we had over a year ago was almost a different kid compared to the one we have now. It's amazing to think about how far he's come in such a short amount of time.

A huge chunk of this success is due to his fabulous OT, "Ms Kim". One of the questions asked me what I think professionals can do for families like ours and kids like Noah. My response? Believe in them. Connect with them. Don't sell them short. These are incredibly intelligent kids, all with different gifts and talents that often end up being so useful that they go on to better the world we live in (ie. Einstein, Temple Grandin, etc). I can always tell which therapists truly love my kid and which ones see him as a number. It's not that difficult... the ones who love him? They get the most progress out of him.

And that's Ms Kim for us. She's a mom, a grandmother, and an occupational therapist. She's also expensive. haha. But worth every. single. stinking. penny. She connects with him and often comments on how cute he is and hugs him because she wants to, not just for the deep pressure squeezes. :)

Seriously, the woman is amazing.

 

 

Part of me feels a little sad for her that she can't see just how much her work is paying off when we're out and about.

 

When we would go to events like birthday parties, Noah would do okay, but he never really participated well. He didn't play with the other kids. He would fuss when he couldn't have the cake before they blew out the candles. He had a great time, but it was usually because he found a spot where he could run back and forth alone.

 

Fast forward to this past weekend.

 

My friend's little boy turned 3, and Noah was invited to his birthday party (fyi, for a special needs parent, just your kid getting an invite means the world). They did a back yard mini-waterpark, complete with a car wash they made (very cool).

 

We usually let Noah take the lead when it comes to these types of scenarios. When we pulled up to the house and got him out of the car, he be-bopped his little self right across their yard, up to the front door, and waited for someone to open it. All by himself, with Brad and I standing there at the car watching him. Cracked us up.

Once open, he walked on in like he owned the place, found himself a Thomas engine and began playing.

 

We gave him some time to get used to where he was, and by the time the other kids started playing in the water, Noah was ready to play too. Like I said... before? He would've just found a spot and ran back and forth, avoiding most of the social interaction. Saturday? He was right in the middle of the fun.

 

I know I talk a lot about how "big" Noah is... how he's so tall and weighs so much more than an average 3 yr old. But it's hard to tell in pictures without some way to compare. The little boy to the left of him was the one who turned 3. Noah will be 4 in August, so he's almost a year older. When we were at the school, I noticed he was the same size as several of the kindergarteners there. haha

(Also, this next one cracks me up. Like three little old men checking out the car wash...)

 

So yeah. It's so cool to see how far he's come and gives me hope for where we'll be a year from now.

 

Happy Monday!!