Life updates - November 2019

While I still refuse to admit it, Remington might be considered, by some measures, a toddler. As much as I insist she is a baby, it’s really hard to believe that when I see her next to an actual baby. She is walking, talking, sitting at a real (kids) table to eat, becoming furious when I try to read her the “wrong” book, and doing all sorts of other things that are generally associated with real people, not adorable little baby lumps.

She is nearly 18 months old, which is so hard to believe. It feels like she was just born, but she’s halfway to age 2!

Hanging with Grandpa

 I always thought age one was my least favorite age, but I failed to realize a key factor in this judgment: every other time I’ve had a one year old, I’ve been pregnant! When Dalton was 17 months, I was 7 months along with Royce. When Royce was 17 months, I was struggling through the first trimester morning sickness with Remi. In retrospect, I have no idea how I did it. I cannot imagine getting ready to have another baby with a child of this age, much less doing it twice! 

With her BFF, Levi

It turns out, age one is super fun when a tiny parasite isn’t sucking every ounce of energy you have, and you have (a little) energy available to play with and chase this tiny person. I sometimes think I miss the baby days, but when good friends have babies and I’m reminded of what the day to day with a newborn is really like, I’ll take toddlerhood! Although I wouldn’t turn down a time machine to enjoy one last hour of a newborn napping on my chest, all curled up like they were in the womb.

She needs to collect all the binkies. To hold while nursing to sleep.

Of course I’m not going to gloss over the fact that Remi is talking. This has been weighing heavily on my mind since before she was even born. I now have 36 words on the list I keep on my phone of words she frequently uses, although I doubt that’s accurate since she seems to add new words daily. The other day, she was playing with an empty conditioner bottle, because #buythemnothing. She would hand it to me, say open, I would open it, and hand it back. Super fun, right? I started modeling saying “open, please” instead of open. After maybe 3 or 4 times of me modeling, she handed it back and said “open, please”. This was one of those minute, seemingly unimportant moments that left me shook.

 I’ve documented Royce’s speech journey here, and some people may know Dalton needed speech therapy and didn’t speak until nearly age 2, although he does not have apraxia (just a typical speech delay). I’ve never experienced typical speech development, and the idea that I could just….say something….Remi would hear it, and start saying it herself seemed unfathomable. How could it possibly be just that easy? And yet, it happened then and it happens all the time! She imitates everything she hears, so a lot of her words are said with the same inflection her brothers use, which is adorable. I feel really lucky to be able to experience this imitation (the boys never did it), and just generally hear tiny little baby words. It’s a lot of fun.

On that note, let’s update where Royce is. As I posted on my instagram stories, he no longer uses the iPad. We returned it to the school district last month. He speaks! He speaks in full sentences, all the time. He was trying to stall bedtime the other night, so he followed me into Remi’s room, instead of going into his room like he was supposed to. I told him to go to his room for bed. He stood by the light switch and said “I turn the light off for you, Mommy”. The goal of the iPad was always to facilitate speech, rather than take the place of speech, so while it was a great tool – good riddance! We are TALKING now!

Royce loves rainbows.

This is not to say he’s “caught up” or that we don’t have a lot of work ahead of us. He is often understandable in context, but there are also often times we don’t understand him and he has to find another way to explain himself. The one I’m most proud of was when he used blocks to build an “I”. He was trying to tell me what he made, but I had no idea what it was or what he was saying (I mean, he’s 3, who knows, it could have been a monster truck in his mind, why would I go to the most obvious thing?). After trying to say “I” several times with me not getting it, the closest I got was “H”, he pointed to the top and said “top” and then the bottom and said “bottom”. He knew by me guessing “H” that I was looking at it from the wrong angle AND figured out how to get me to look the right way!

So while I was and continue to be amazed by how well he communicates in these situations, now his main goal in speech therapy is to improve his articulation and minimize these situations. He receives speech therapy (from an amazing SLP) three times a week at school. On Tuesday, he will do his annual evaluation at Kennedy Krieger, which is a local children’s hospital through Johns Hopkins, which I personally credit for getting him speaking to begin with. They do incredible work. Their policy is six months on, six months off for speech therapy because it is in such high demand. He will begin his next six month stint this January. I can’t wait for him to see his therapist there, because he is like a different child between July, when he last saw her, and now.

One of my favorite current Royce phrases is “I just joking”, like when he told me he saw a Chick Fil A on a Sunday (he didn’t). He cracks me up with his constant jokes. He also just started to be able to ride a balance bike, and mastered it within about a week. My constant phrase to him is “one kiss then give her space!”. He is obsessed with Remi. Which is sweet, but she doesn’t want constant overbearing hugs and kisses. We are working on finding a balance so he can enjoy playing with her without knocking her over.

I definitely had another shook moment in the bath with Royce and Remi recently. They were making bubbles. “Bubble” is one of the patterns that is particularly difficult for Royce and targeted in therapy (CV1CV2 for those in the know, although this isn’t the greatest example, puppy would be a better one.) He was saying it in his way, which probably wouldn’t be understandable to a random person. Then Remi said “bubble” with perfect articulation. It just came that easily to her, something her brother, two years older, had been working on in therapy for months and couldn’t yet do. This was a harsh dose of reality after I was flying high on returning the iPad. That said, I don’t have real concerns about her surpassing him in speech. While her articulation will likely continue to be better, he is still two years ahead of her cognitively and that’s going to be extremely clear until they get to whatever age it is where two years of growth doesn’t matter any more (18? 20? 36?).

I hesitate to update on Dalton, because I fear jinxing us, but...five is a really great age. He’s old enough to understand reason (unless he’s tired or hungry), play actual games with, be actually helpful in the kitchen, and is just generally a fun person to be around! 

He's so helpful with his sister!

He’s old enough to have a real conversation. But he’s still young enough to be cute, and sweet, and silly in only the way a young child with no inhibitions can be. 

On the weekends, a lot of times one of us will take him out during naptime for the other two for some one on one time, and it’s just...fun. 

He’s past the diaper bag stage, past the needing to be constantly watched and kept out of danger stage, past the middle of the night wakeup stage (the only kid in this family who is), and into the kid stage. Sure, the sibling fighting and whining makes my eyes twitch on a daily basis, but overall the kid phase is pretty fun.

Back to School - but not for me!

A new school year has begun!

But not for me. I’m still on a leave of absence until Remi turns 2 – and with her currently 15.5 months, the end is creeping up faster than I would like. Last year, it felt so strange when teachers returned to school in August. For the first time since I graduated college, I wasn’t part of it. This year, I’ve grown accustomed to a certain standard of living. The strange thing was thinking that next year, I’ll be back in the ranks among them. I’m trying to just enjoy the rest of my time off, now that I know I can survive the SAHM life, if only barely. I’m also doing my best to dust off my rose colored glasses to focus only on the positives of work.

I'm not ready to give up going to the zoo on a Monday morning!

Enough about me. The important thing about this year is that I’m writing this blog post at 2:57pm – with no kids trying to grab the keyboard. Why? Because my eldest two are off at PreK, and Remi is napping.

It’s been a bit of a journey to get here. Last year, Dalton attended a private preschool two mornings each week. It was fine. His teachers were loving and capable, he enjoyed going, it was close to our house. There were things we didn’t love about it, so we didn’t plan to send him back the following year. He ended up leaving there in March when a free program became available, and he attended that until early May. We LOVED this program, but the location was awful for us.

Yeah...don't quite recall giving him permission to turn 15.

None of this caused me any stress really. With Dalton developing typically, I’m not about to lose sleep over preschool. The purpose is to get him around some other kids, learn school norms, and have some structured activities. Anywhere and anyone can provide that. No, I was very busy funneling all my time and energy into stress over Royce.

And not because he climbs everything.

It was being strongly recommended that preschool would help him develop his language skills. We hadn’t originally planned to send him at age 3, but of course we were willing to do anything to help his speech. The idea of sending a nonverbal three year old into preschool however, made my skin crawl. While I felt Dalton could pretty much go anywhere and get those simple preschool skills, the fact is that helping children with special needs thrive is just not something anyone can do. I spoke with the teacher and director at Dalton’s private preschool and I just...wasn’t comfortable. Royce doesn’t have many typical behaviors that are associated with lack of or limited verbal skills (tantrums, hitting, biting, etc). He’s a very laid back child and my concern was him just getting forgotten in a typical private classroom. He would be quiet because, well, he couldn’t talk and he wasn’t going to scream and yell for attention. I thought about it every single day and my heart felt like it would break thinking of him just sitting there like a bump on a log. I knew how smart he was, the testing showed how smart he was, but if he couldn’t express his knowledge the traditional way, it would take a teacher going above and beyond to help him learn.

I did a lot of research, and a program that seemed just perfect for Royce existed – right at our local elementary school! A three year old class that was made up of 50% children with IEPs and 50% typical children. It’s taught by a special educator, the speech language pathologist does push in lessons, another special educator consults with the teacher and pushes in, and there are two assistant teachers. It was a long road to getting him a spot in this program, but long story short, that’s where he is at this very moment!

I feel extremely confident about his team of service providers and his IEP goals. We actually had to revise them quite a bit because he has made so much progress! He’s consistently using 2-3 word phrases unprompted and independently. While I don’t think the majority of people reading this blog post could understand him yet, he will be working on articulation weekly with his SLP and I feel really positive that he will make huge strides this school year. For no apparent reason it hit me the other morning that he is TALKING and I got really emotional while randomly driving.

I have every reason to believe that come the end of the school year, he will not only still be talking, but speaking more clearly and using more complex language. After so long of being stuck at the same spot without seeing any real change, and being told not even six months ago that he may never speak, this is a pretty incredible feeling.

So where does that leave Dalton? In the same program, at the same school, right next door! While Royce got one of the coveted spots in the 3yo class due to his IEP, Dalton had to enter a lottery for the 4yo class. We found out he got in at the end of August. While Dalton turns 5 in a week and a half, the cutoff for Kindergarten in Maryland is Sept. 1, so he doesn’t go until next year, which is kind of the perfect situation.

The boys attend five days a week, in the afternoon. They are bussed there and back daily. This leaves our mornings free for playdates and adventures. This is hands down my favorite thing about being home (ok second favorite – napping during the week is my favorite) and I’m so glad I still get another year of it.

Hiking with our friends the other morning before school.

Then I kiss them goodbye, they get on the bus, adults much more qualified than me teach them and play with them, and they are bussed home. Could life be any better? 

While of course I love my kids more than anything in this world...loving them face to face all day, every day, mostly by myself, is a lot.

Last year, being home with an infant, 2, and 4 year old all day, every day, minus 5 hours a week Dalton was in school, was a lot. Summer time, being home with a 1, 3, and 4 year old all day, every day, with no break/childcare/school/camp/grandma’s house, was a lot. I want to pretend I’m supermom and I love every single moment without fail. I wish I didn’t feel guilty admitting that I crave and need breaks from them. I need breaks though. I’m a better mom, better wife/daughter/friend/sister, happier all around person when I get a little down time to myself. Even though literally every single mother I know feels the same, and I would wholeheartedly assure them they are in the right, something about putting down in black and white feels shameful.

On the topic of mom guilt, I have some guilt that I’ve put so much more of my mental energy into Royce’s education compared to Dalton’s. But I’m trying to remember that they are only ages 3 and 4 – I have plenty of time to even out the balance!

Judging me

It’s definitely a transition from daycare/private preschool, where you see their caregivers at every drop off and pick up. We used a much more informal in home daycare, where there were no detailed activity sheets, no cameras that broadcasted live feeds to your phone, I didn’t even know what they ate there day to day. Still, I underestimated the comfort of the daily face to face check in. Now, I just put them on the bus, and get them off a few hours later and hope everything went well in between. I’m at the mercy of small children for any information.

Prior to being a parent, when my only experience was on the other side of the public school system, I always swore I would make life easier on the teachers and not be “that parent”. You know, not a regular mom, a cool mom. Now I realize – Alyssa, you dumb slut, that’s a privilege reserved for parents of children who don’t even have a whiff of a special need. Don’t get me wrong, I will always be polite, respectful, and make sure to thank the educators for everything they do. But I’ve already emailed the SLP and case manager several times. It’s my kid’s ability to communicate with the world, ya know? Gotta stay on top of it!

So that’s what’s new with us! Anyone else do public preK? Private? Loved it, hated it? Share all the preschool experiences!

Apraxia Kids National Conference

As you may have seen on my Instagram, I was recently extremely lucky to be able to attend the Apraxia Kids National Conference. And I don’t even like or use this word but I’m going to say it was a blessing because I can’t think of a better word. It was an incredible opportunity, provided for us by some amazing grandparents, and Instagram.

All the parents put their child's picture on their badge!

Let’s back up. As a “wear my heart on my sleeve” type, I’ve been all over social media once our middle child received a diagnosis of CAS, Childhood Apraxia of Speech, this past spring. An Instagram friend reached out and suggested I follow a friend of hers, Monique, who posts beautifully about her 5 year old son with CAS. I immediately followed and went FULL STALKER MODE. Like that person who suddenly starts following you and writes a long comment on a post from 3 months ago. I was just so excited to see things like another little kid using an iPad with the same program Royce uses.

Monique and I started chatting through DMs and she told me about the Apraxia Kids organization, and the upcoming national conference. Tickets weren’t cheap, so I thought it was something to keep on our radar for maybe 2 years from now, once I’d been back at work awhile. But it was in Pittsburgh this year, which is less than four hours away from us. The idea kept nagging at me of trying to attend this year, when it was so close, and this diagnosis was so new and confusing and overwhelming.

Somehow it all came together. My father was extremely generous and got us a conference ticket for “Royce’s” birthday (I mean, if you can’t get away with that at age 3, when can you? Plus we don’t need more toys like so so do not need more toys). My mom and stepfather and inlaws helped us out with hotel, gas, and food. Royce is truly so lucky to have all of his grandparents so devoted to helping him, even if he’s clueless about it right now and just thinks they are fun people to FaceTime and play with.

Hotel room view!

Not even 3 months after the diagnosis, we descended on Pittsburgh to learn all we could about it! I must say, living in Baltimore for the past 14 years, I was led to believe Pittsburgh is a horrendous place, never to be visited. That couldn’t be further from the truth! It was such a lovely, fun city.

Let’s do some Q&A! Thanks to Goldthings for every single question.

Who was the conference for? Parents, and Speech Language Pathologists (SLPs). It was about 50/50, with sessions specific to both parties. It was not designed for children – in fact, our kids did not even set foot in the hotel hosting the conference. It was a typical conference format of sessions in conference rooms with power point presentations about a variety of topics, so not exactly something a three year old would be interested in.

So what did you do with the kids? The conference actually allowed couples to share an entry. We took turns attending sessions/hanging with the kids. Our hotel was about a mile away, so this meant we missed all the networking/session break stuff, because whoever was at the conference would walk back, hand off the ID badge, and the other person would book it back to the next session. Not a perfectly ideal situation, but we still got a ton out of it.

Were there any A-HA moments for you? Honestly, I’m not sure yet. It was information overload. In a good way, but still, wow. We haven’t even finished sharing with each other everything we’ve learned from the sessions yet. It was also a lot to take in emotionally. Basically two days straight of focusing on this huge source of stress and worry in my life. One of my big fears was confirmed – statistically, children with CAS do poorly in reading. Which is kind of dumb for me to be upset about. I know how reading is taught, and I know what Royce struggles with. I guess it was just one of those trying to stick my head in the sand situations trying to pretend I don’t see the obvious.

That was kind of negative. I don’t mean it to be. We learned a ton of helpful stuff. But things also weren’t sugarcoated. I feel like sometimes I can come off like rah rah Apraxia cheerleader, but the fact is, it’s a disability, it sucks, and I would give anything to magically make it go away tomorrow. That’s not going to happen, but we now are armed with so much new information to help navigate through it.

Like this handy infographic!

Did you learn about any new technologies? Yes! One of the ways they sometimes help children in therapy is by using an ultrasound. I’m going to do a terrible job describing this but they design a special mouthpiece to be worn by the child, it connects to a laptop, and a computer program allows them to see the movements their tongue makes so they can adjust as needed. How cool is that? This is, of course, for much older children, like teenagers, but I got to see a video of a girl using it and it was really interesting.

In terms of more relevant learning, I attended a session that gave an overview of the most common, research based therapy methods for children with CAS. Because children with CAS struggle to use their brain to create a motor plan with their mouth for what they want to say, a lot of therapy is designed to create muscle memory for words. This is very different from traditional therapy (I have no idea what tradition speech therapy looks like, but after the conference I know it’s different than CAS therapy). One presenter gave the example of learning to tie your shoes. Initially, it requires a lot of thought, focus, jerky movements as it’s new and different. Now, most adults can probably tie their shoes in the dark while carrying on a conversation, because the muscle memory is there after doing it countless times. That’s what therapy aims to do with speech, because forming words feels like that awkward and challenging initial shoe tying.

Was the conference solely for Childhood Apraxia of Speech? Yep! It is extremely common for children with this diagnosis to have other diagnoses as well, such as other motor planning struggles, like being slower to learn to walk, go up stairs, etc. However, this conference was focused on issues pertaining to CAS.

Were any adults there with CAS? Yes! One of the board members was diagnosed with CAS in the 90s as a child. There was also a specific panel of teenagers and even younger children with CAS speaking. We did not attend this – while it sounds amazing, it feels just SO far from where we are right now, I’m just not ready. I hope in a few years to feel differently.

What sessions did you attend? I’ll paraphrase titles to give the general idea.

Apraxia 101

Encouraging risk taking in children with speech disorders

Eric went to a father’s only luncheon and informed me very proudly he is in a dad facebook support group with his new friends now

Advocating for your child’s IEP

An overview of the types of research based therapies for CAS

How to help siblings of a child with CAS

What’d the person not attending the session do with the kids?

Two words: hotel pool. That killed a lot of time. The conference was also across the river, so we walked to the bridge to meet Eric one time to switch off. The boys loved seeing the river but they walked a good two miles round trip! Dalton even said his feet hurt from walking.

After the first conference day, we walked to Primanti Bros to get delicious sandwiches, and ate them outside at this big lighted splash pad thing while the kids ran through the water. They were in heaven.

While this is definitely what many of my friends would consider a nightmare, all five of us stayed in one hotel room and it worked great for us. Our kids basically always want a parent in close proximity when they sleep, so having both of them in the very same room was their dream and they slept pretty well. We just played super loud white noise. I actually almost was late to the conference on day 2 because I woke up at 7:15 and it started at 8! No one else was up! I hadn’t set an alarm because our kids are always up long before 7am.

What's your travel situation with kids? Is 5 in one hotel room your nightmare?

May updates

Well my last post is old news by now and it was a bit heavy and Debbie Downer-ish. So let's do some lighthearted updates!

1. HAMILTON

In case anyone currently resides under a rock, Hamilton is an amazing musical that's super popular right now. My mom and stepfather won tickets recently and got to see it in my hometown, in upstate NY. In fact, they saw it on the night of the Battle of Winterfell so I cannot even imagine what an emotional undertaking that must have been.

And again, in case you reside under a rock, the Battle of Winterfell was on a Sunday. The next day, Monday, around 8pm I was chatting with my mom on the phone and she mentioned they were seeing Hamilton again...the very next night. They had won tickets again and she just mentioned all casually "oh yeah we're going to Hamilton again tomorrow" like it's NBD.

I was like oh. hell. no. My sister, brother, and brother in law were going the following week, and I was like I am not going to be the only one in the family left with only listening to the soundtrack on spotify like some kind of loser while you all see it twice in 48 hours.

At first, I was half joking. I live about 350 miles away, and thought...Hamilton can't be that good can it? A 700 mile round trip as the only adult with 3 kids under the age of 5 good?

I texted my friend with 3 kids who lives in the same area and had just seen Hamilton the night before my mom did. She confirmed: yep. It's that good.

I asked a few other friends and responses ranged from immediate yes to why would you even ask me that question instead of packing right now?

Also, during this time Eric was seeing the Avengers so I couldn't get any input from the one person who actually knows the kids as well as I do.

I called my mom back and told her my half joking was now 90% serious and that I would sleep on it and confirm in the morning. Then my sister texted me and offered to go to my mom's house with my stepfather during the show to help with the kids, which eased my anxiety because even at 11 months I still get really anxious about leaving Remi. But with her aunt as a designated one on one baby cuddler, it was on. I put the tablet on the charger (possibly the most important road trip with kids prep, although one could argue it's snacks).

Eric was a little confused in the morning with an Avengers hangover while trying to get ready for work but I think he got the basic idea. While 350 miles can be driven in about 6 hours, those with small children know that it takes a bit longer, to say the least. Not to mention my super independent thinks he's potty trained but he's not really middle kid slammed the diaper drawer shut when Eric tried to put a diaper on him and got underwear out and defiantly put those on instead. So....cool. The show was at 7:30pm that evening so there was no time to lose.

I figured it would either be amazing or horrible. It went pretty smoothly! The boys mostly watched shows on the tablet, Remi slept, ate snacks, looked out the window, and overall didn't hate life! Of course, we took a lot of nice long breaks, but we made it by show time.

My anxiety was still on high at the beginning of the show. We hadn't even gotten to the end of the American Revolution before my sister texted me a picture of Remi peacefully passed out and I was able to relax and enjoy the rest. We stayed another 3 days and Dalton has asked to return literally every single day since. These kids love their cousin time.

2. Birthday month

Royce turned 3 on May 6!

We celebrated by meeting friends in Washington, DC, at the Smithsonian Museum of Natural History. Of course, despite being at one of the best museums in the world, the main attraction for the kids was the trains.

The 7am train, followed by 2 different metros, with 4 small kids and two infants between just two moms...piece of cake. Or something. Whatever, no kids were lost. It was insane but it made Royce's birthday really special. 

In my limited experience, age 3 is when kids start to anticipate their birthdays. I didn't want to miss out on sharing Royce's excitement. A few weeks prior to his birthday, I talked to his private speech therapist about it and she created a planning sheet and worked with him in therapy on all his birthday preferences. Per his request, the five of us had pizza, blue and black balloons, and vanilla cake with purple icing. He had specifically requested a Team Umizoomi cake, which is his favorite show. To quote a meme: I'm an Amazon mom, not a Pinterest mom. He helped me bake and decorate his cake after nap time, which we always do on birthdays. Then I asked him to go outside and get Eric and Dalton who were next door chatting with our neighbor. When he left, I put a bunch of Team Umizoomi charms I had gotten from amazon on the cake. He came back in and was so thrilled and surprised to see his Team Umizoomi cake.

And of course, to open his gift from us. 

Royce was born at 6:51pm, and I swear by bedtime that very evening, he started acting extremely three. If you know what I mean.

And Remington turns one this week. Fastest year of my life. We're having a party that I've done nothing to prepare for, aside from my huge win of finding the first birthday onesie that Royce wore. I booked a pavillion near a huge playground way back in the winter, so as long as it doesn't rain I think things will be fine. 

3. The hair

Yep. We've gone from the most glorious, beautiful, glossy, perfectly shaped curls ever...

to nothing.

And you know what, I'm not going to pretend I like it. I loved those curls. But here's what happened. Dalton and Remi were playing really nicely upstairs for a few minutes while Royce napped and I had the audacity to sit down by myself and eat a sandwich. This turned out to be a huge mistake. 

I went upstairs after eating and immediately noticed Dalton had tiny hairs all over his face. 

"What's all over your face?"

...nervous laughter...

I looked more closely and realized the front of his hair was buzzed. And there was a huge pile of hair next to him. He told me he had used Eric's beard trimmer. 

I wasn't panicking at all yet. I was upset, but honestly he has so much hair you could barely even tell anything happened and it would have been easy to work around.

I asked him why he did it. He said he wanted short hair like daddy and didn't want to have to comb his hair anymore. That's when my heart really started to sink as I realized this wasn't just a random impulsive thing but something he had actually thought about and really wanted. When I texted Eric, he said he had been mentioning wanting short hair for a few weeks. When Eric got home, it was time. I won't say I was completely sober or dry eyed, but I tried to put on a brave face for the sake of my son.

I know I could have technically said no, but we've been telling him "your body your choice" since practically birth. I had to put my money where my mouth was. It turns out that children are not just ornamental and they are actually living beings with feelings and independent thoughts, so while I was really, really tempted, it would have been a pretty big asshole move to make him keep his hair long (especially going in to the heat of summer!) just so I could enjoy how pretty it was. 

I just don't understand why he had to choose this week to do it, when I was already suffering emotionally from the loss of Game of Thrones and my last baby rudely about to turn one. 

He wanted to ride his bike when the haircut was done and it was crazy how much I had to tighten his helmet!

4. Race training/running

The Baltimore Ten Miler is in just 12 days! I'm about as ready as I'll ever be. My training buddy Jackie and I have completed a 10 mile run. More importantly, we've done almost every long run in hilly areas, since this race is known for having killer hills.

My return to running after giving birth has been very slow this time. Remington was born May 25, 2018, and on May 1, 2019, I went for a 3 mile run and was just so excited that it felt normal. Not in terms of recovery or my c section scar, because that's felt fine since about 6 months postpartum. More in terms of feeling like the runner I used to be. Now, I am still nowhere near the fitness levels I once had and don't plan to ever be there again, because those required a time commitment to training that's just not a possibility right now. But running felt good, and doable, and normal. I ran 3 miles and never once felt like I needed a walk break for one of the first times since she was born. Maybe even the first time.

Instagram gets in my head, and I know tons of people are way more physically fit after having a baby and it can be a little embarrassing to be so far on the other end of the spectrum. The transition to three kids was extremely overwhelming for me and I had absolutely nothing left to give mentally to training or exercise. I did get some exercise, but I did not have it in me to care about pushing myself or trying to improve my fitness.

Anyway, that's where I'm at, not so much a #beast #motherrunner, more like just a regular mom who tries to do some exercise sometimes.

And that's that! Please share any and all traumatizing kids haircuts experiences. Please also share alllll the Game of Thrones thoughts. Spoiler alerts because sorry, it's been nearly 24 hours, why haven't you watched yet?

Childhood Apraxia of Speech

I’m writing today about information I haven’t even yet fully processed, in an effort to process it. It’s around 2:30 pm, and here’s a bunch of verbal diarrhea, some of it written through tears. At 10am today, my almost 3yo son’s SLP told me sort of off the record that she believes he has Apraxia, or more specifically, Childhood Apraxia of Speech (CAS). It’s not in his medical file, but after working with him for months, she feels comfortable using that term to describe him.

It’s not an out of left field diagnosis. Since last summer, SLPs have indicated that R has a oral motor planning disorder. Everyone who worked with him seemed to be in strong agreement with that. A few months ago, I finally asked N, his private SLP, if there are other oral motor planning disorders, she said no. “Sooo...everyone is pretty much saying without saying he has apraxia then?” “Yes”.

At that time I started to look into it a bit, joined a Facebook support group, but in the absence of an official diagnosis, it was hard to ignore that nagging part of me that said “maybe he doesn’t have it!”. So I hid the support group from my feed, stopped googling, and kept on keeping on. Both his therapy and the work we do at home is based on how he presents, and was and is consistent with therapy for CAS. Therefore, a diagnosis was more for me than for him at that point. N also told me that there has recently been a problem with inaccurately diagnosing CAS in young children, causing SLPs to be more hesitant.

While it is still not a part of his medical records, my conversation with N this morning was enough to push me over the edge from “but there’s still hope he doesn’t have it!” to “he has it, hop on board”. Which sounds a little more depressing than it is. I mean, he’s not speaking. It’s not like if he didn’t have it, things were fine. I guess, as much as I told myself I knew better, deep down some little part of me hoped he would just bust out with a sentence one day. He won’t, but that doesn’t mean we aren’t going to work our asses off in therapy so he can work his way slowly but surely to using sentences one day.

I’m told CAS is rare, making it likely that many people reading this don’t even know what I’m talking about! As a teacher married to a teacher, I didn’t know what it was until I started googling very recently. From https://www.apraxia-kids.org/ :

Childhood apraxia of speech (CAS) is a motor speech disorder that makes it difficult for children to speak. Children with the diagnosis of apraxia of speech generally have a good understanding of language and know what they want to say. However, they have difficulty learning or carrying out the complex sequenced movements that are necessary for intelligible speech.

Essentially, it’s not a physical problem. He can understand everything others say, and he knows what he wants to say, but his brain can’t get his mouth to do it.

The part that’s a really tough pill for me to swallow is that CAS is a neurological disorder. It’s not a developmental delay that he will outgrow, which I assumed it was when he initially seemed behind in his speech. Everyone assumed that, because that’s what happens with most kids who have speech issues! Including our older son! Having to shift my thinking to accept that this will be a lifelong struggle for him is hard. It’s very easy for me to begin to ruminate and go down the rabbit hole of fears.

 “Kids will make fun of him in school.”

“His teachers will ignore him because he can’t speak to answer questions in class.”

“People will treat him like he’s stupid because his speech will be different.”

“He won’t be able to make friends.”

I know the advice I would give to a friend in this position would be to just take things one day at a time and not borrow trouble and that’s what I’m trying to do. One of the most comforting sentiments came from my friend Emma. I would consider Emma a good friend, but I’ve never once spoken to her, or even met her. She’s an internet friend. One of my many internet friends, and one who lives too far to easily meet in person. And she simply reminded me that we have become good friends without ever needing to speak! Something that’s even more prevalent for the younger generation. I’m now the only parent I know who is excited for my kid to grow up in the social media era. Whether or not R is able to use speech as his primary communication tool...there’s a whole social world at his fingertips that he will not have any disadvantage in.

On that note, his case manager has reached out to Assistive Technology and he will likely be using an iPad or some sort of device to communicate in the near future.

Some common questions people have:

“Does he have autism?” No, autism has been ruled out by his evaluators and service providers.

“Does he have low tone/muscle problems?” Nope, same as above, ruled out by an occupational therapist.

“Will you teach him sign language?” No, many children with CAS are able to speak with the help of speech therapy and that is our focus right now. Teaching a 2 year old another language that requires a lot of fine motor skills would be a bit of an either/or thing, and there is no reason to give up on speech at this time.

“Does he have other delays?” He does not. He recently did standardized testing to determine if he qualifies for an IEP. In every area aside from expressive speech, he was on or above his age level. His receptive speech is exactly where it should be (aka he understands everything that is said as much as any child his age), which is easily observable if you know him. He scored slightly above his age level for cognitive, gross, and fine motor skills.

“Is he making progress?” YES!

• Over the summer, just after he turned two, he began to imitate the initial sound of words after we modeled it. For example, he would point to a banana, we would say b, he would imitate the b sound.
• In the early fall, he began to be able to imitate two sounds, for example b followed by the short a sound for “banana”, although he could not combine them smoothly. By late fall, he was starting to be able to combine them, so one smooth ba instead of two separate sounds.
• I was thrilled to record his first word, “yes” in his baby book this past February! I didn't record it until he had consistently and daily used it correctly for about 6 weeks, because he has "said words" before but they haven't stuck.
• He now consistently uses “mama” and “dada” to speak to us (music to my ears!).
• He is just now beginning to say words he knows independently, without us first modeling them. For example, he called “mama!” when we pulled up at his brother’s school, and when I asked what he needed, he said “out”. This is HUGE deal for him to answer a question verbally without prompting. Probably 95% of his speech is still prompted at this point but the fact that he’s doing anything unprompted is massive progress.

A hallmark of CAS, the one that we feel best fits R, is that imitation is extremely difficult. So while he’s been babbling mama and dada easily since infancy, he never copied when we demonstrated how to use it to refer to us. This is why we’ve had to work on building words one sound at a time. It’s also why traditional speech therapy techniques, like naming familiar objects, doesn’t work. R couldn’t imitate an entire word and didn’t try because it was so far out of his abilities. Now, he CAN imitate a lot of words, particularly cv (consonant vowel) or vc combinations, like “go”, and he will attempt even if the word is unfamiliar. We are working on adding the final sound to cvc words such as “bus” and adding on to words he is already familiar with. For example, he can easily say mama and dada now, so we push him to add on the reason he is calling us, such as “mama look” or “mama help”.

As you can see, he's working extremely hard and making phenomenal progress. I won't pretend it doesn't hurt that Remi's peers will be speaking well before he will. Every parent hurts at the thought of their child struggling in life, and it can feel unfair that something that comes so easily to almost every child is going to be hard for ours. Forever. However, there are also tons of positives to our situation (no other delays, the fact that it's 2019 and technology is amazing for communication, our insurance covering some private therapy, to name just a few). 

One thing I did that I know would never even occur to my husband was click on the section about “why” this happens, with my heart pounding, terrified of finding out that something I did during pregnancy caused this. Because that’s what we as mothers do. We always wonder if there was some way we could have made our children’s lives easier, better, MORE. I am extremely lucky to constantly have friends and family working to lift me up, telling me I’m a good mother because I take R to therapy, work with him, fight for services. And I appreciate it so, so much. I would absolutely tell someone else that and mean it so hard. But it all rings false to me. I’m never going to feel like I’ve done enough until R can tell me that himself.