Thursday, April 18, 2019

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.



Tuesday, March 26, 2019

That SAHM life


I'm creeping towards the halfway point of my break from the rat race! I'm on a leave of absence from teaching for two years, and the first school year is nearly 75% complete. This seems like enough time to share some reflections. I've actually been off work since about a week before I delivered. My last day of work was May 15, 2018, so it's been nearly a year of being a lady who lunches!



The number one comment/question I get asked is "How do you go so many places?". I'll approach it from two directions. The first being; how do we do it in terms of energy?

Look, I get it. There are kids out there who will sit quietly and color, play with their toys, even watch tv. But these kids are not my kids. My kids are active. Of course, all small children are active and high energy. But my kids don't sit and watch tv. You know how people talk about giving their kids screen time limits? I wish they would watch enough that I would actually have to cut them off at some point.

They are feral.

I tried to get them to watch a ten minute show while I dealt with the mile high pile of dishes in the sink the other day. Ten. Minutes. I got about one dish washed before all the cushions were on the floor and they boys were deep into building a fort. Meanwhile, Remi was unloading the dishwasher faster than I could load it. And hey, I'm all for fort building! But the problem is, it inevitably turns into an argument over a pillow, or a blanket, or a speck of dust. Then they want to leap from the highest point in the room onto the fort. And my patience for arguing over literal trash and injuries sustained because they insist on parkour-ing across the freaking room instead of just walking is shot by 8am.



I would really prefer to take them some place like a playground designed for jumping, running, and flinging themselves from great heights where they can get all their psycho energy out and as a bonus, I can chit chat with an adult as long as we don't mind constant "mommy look at me!" interruptions.

Or a 20 foot rock wall to climb. Whatever.

The second: cost! How do we afford all these activities, especially on one income?

Basically - we don't! We spend very little on activities. Here's how:

  • Memberships. We have very generous grandparents and aunts/uncles who always want to get birthday gifts for the kids. We always ask for memberships. A science center or zoo membership for the full year gets used so much more than any toy!
Rocking the cutest outfit ever at the Science Center
  • Friends. At the beginning of the school year, I met some of my people that I now hang out with near daily and have saved me from a complete mental breakdown more than once and made this SAHM life a billion times more fun. We all have kids around the same age and made a little facebook group (little...like I think ten of us). We figured out who had memberships to what and plan activities where whoever has the memberships gets everyone else in free.

  • Free. There are so many free activities. Libraries, nature centers, free forest school hikes, the list goes on. I'm lucky we live in a big urban area where there are just tons of free kid activities available. 
  • Cheap. There are also tons of deals and ways to save. We keep an eye out for groupons. Museums and nature centers often have activities for very little. For example, today we went to the Baltimore Museum of Industry for "Wee Workers" where the kids learned about safety with books, crafts, and a tour of the museum. $5/family. 

  • Packing lunches. It's a pain, but on the bright side I do the inevitable work in the morning before my coffee wears off (ok let's get real....before my first coffee wears off since I double down after lunch). It's so tempting to just grab something while we are out but it also adds up like crazy so we pack lunches the majority of the time. Exceptions are Chick Fil A, because playplace, and because it's Chick Fil A. 
In all honestly if I actually had to stay home with the kids I would lose my mind. Even two days in a row of that sounds awful. We meet up with friends almost every day for playdates and it's a glorious existence. 

Of course, like anything, there are pros and cons. 

The pros:
  • It eliminates the constant feeling of "jack of all trades, master of none". Get the kids up, rush to work, try to be hyper efficient at work so I can leave as soon as possible, rush to get the kids, playdinnerbathbedtime, try to prep everything for the next day, attempt to hang out with my husband or have a little me time, rush to bed, rinse, repeat. It's exhausting. 
  • Mornings are one billion times better. It's so freaking stressful trying to get two small children out the door for daycare and not be late to work, I can't even imagine 3. If I wanted to do anything besides attempt to look not homeless and get the kids in the car (for example, work out, put dinner in the crock pot, clean last nights dishes, etc) I had to be up by 5am. 
  • There's no need for a panic attack when a kid gets sick. You just...take care of that kid. There's no frantic comparing calendars, trying to figure out who's taking off, attempting to comfort the kid while emailing coworkers where your emergency sub plans are, intense guilt...none of that. 
  • When the kids or baby or all 3 have a rough night, it's not as bad. Sure, having sleep interrupted still sucks, but it doesn't cause that soul wrenching fear of "how am I going to do my job well when I'm so exhausted?". 
One time I thought babies slept like this. All night. During naps.


Then I became a parent and learned how babies really sleep.




  • It's just more fun. Sorry not sorry, it's called "work" and you get a paycheck for a reason. The phrase TGIF exists for a reason. Being home, getting to do what you want to do when you want to do it is amazing.

  •  
  • What I originally thought was the biggest pro - NO PUMPING. Seriously my pump has dust on it. Breastfeeding is indescribably easier when you just...breastfeed as needed. Who knew? Oh right, every other industrialized country that offers actual maternity leave knew. 
  • The actual number one pro - I can do SO much more for Royce without having to schedule around a full time job. It sucks but having a child with special needs and two working parents is a disadvantage. Right now he is in an hour a week of private speech at one of the top children's hospitals, and he simply would not have this opportunity if I were working. It's at 9am on Thursdays. When he turns 3, he will begin a public preschool program 2 afternoons a week. The parent has to remain in the building for students to attend (and provide transportation). Another opportunity he wouldn't have with two working parents. Eric and I have tossed around the idea of me going back next year (instead of in 2020) and while we are both open to it, we just feel we can't seriously consider it because it would eliminate so many opportunities for Royce at a young age when it's so crucial to intervene. 


The cons:
  • Yeah that whole "jack of all trades master of none" thing...well I certainly haven't become a "master" on the other hand. While I wish I could say otherwise, the fact is I have less patience for the kids being with them all day every day. I can't truly compare I guess since I've never been working with all three kids, but I'm pretty sure it's true. It's weird, since at my job I also need a ton of patience dealing with sixth graders, but it's different struggles, different children, and I think doing anything all the time will burn a person out more than mixing it up. 
  • I'm getting dumber. Yeah. While I sure as hell don't miss observations, standardized tests, and the like, and maybe "miss" is a strong word but - I like having professional challenges in my life. 
  • When we were both working full time, I could say without hesitation there was no "primary parent". Now, we would both agree I'm the primary parent. I have all the mental load of juggling doctors appointments, keeping the kids in clothes that fit, potty training, nap schedules, and all Royce's therapies and IEP stuff. And I'm not complaining! That's the beauty of a stay at home parent. No one has to miss work for all that. But it has changed the dynamic, and we both agree we liked things the way they were before. 

  • I thought the house would be cleaner. The daily struggle of when the kids nap, do I rest/chill/waste my life on instagram, or clean? I'm writing this blog post now so, I bet you can see where I end up 90% of the time.
  • Money. The most obvious. Not working = less money. While I'm clearly not chomping at the bit for the 2020-2021 school year when I'll be back, I do look forward to having two incomes again. And also, can we all agree to just stop saying "well with 3 kids in daycare it's not even worth it for the mother to work". Daycare benefits both parents, so it should be seen as a percentage of the total income, not just the mother's. A woman with children can work even if she doesn't make more than the cost of daycare. Daycare is a few years. A career is forever (and I'm very thankful mine offers the leave of absence option because I have no intention of giving it up). It's not the 50s. *steps off soapbox*

The end! Thoughts? Agree? Disagree?

Thursday, February 28, 2019

All the words for very basic updates

Life updates!!

It's been awhile!



The usual thing is happening where I think of all these things I want to write on my blog in my head at various times but never actually do it. Whenever I have down time when the kids are asleep or playing with Eric or whatever when I could blog I'm usually reading or scrolling through Reddit eating peanut butter cups in bed and can't be bothered to sit upright at a computer. This mom of 3 thing is pretty exhausting and just intense and I feel like I have nothing left to give once the kids are in bed. Like I can be a mom of 3, and do it, and love it, and do a pretty good job (interspersed with moments of losing my temper and self doubt and crying because I'm the worst mom ever). But then I just have nothing left to be a wife, friend, daughter, sister, aunt...anything else. There's no way I would be functioning as an employee so thank goodness I have some more leave time to get myself together before I have to worry about that. But...yeah. That's where I'm at.

That seemed like kind of a depressing start. But I don't feel like life sucks or anything. Quite the opposite! I would say it's more like amazing filled with love and chaos and complete insanity and fun and adorableness 80% of the time and then total meltdown everyone crying everyone hates everything the other 20%. I feel like I want to do a whole other post on my mental state but this much simpler one has already been like a week in the making, so don't hold your breath.

So, what are we up to?

Dalton: Not much to report! Learning, growing, playing. Amazing me every day with his genius level smarts (I guess it's possible I'm biased by love and he's actually just average but it seems amazing because I've never had a kid this age before). He melts my heart when I tell him he can come upstairs each day. He runs up screaming Remi's up, Remi's up and gives her hugs and kisses. He sings her twinkle twinkle little star when she cries. When he gets a treat or a sticker or anything special (like when he went to work with Eric and Eric gave him his own composition book), he immediately asks if there is one for Royce. He's like my coparent during the daytime and I love having him as my partner in crime. Honestly he's the more responsible one and is constantly reminding me not to forget stuff we need, checking if I strapped his brother and sister correctly into their carseats, basically running the show.

His current favorite imagination game: baby class. They are the teachers.

He's also rapidly approaching 4.5 and my theory is the half ages suck and he is once again proving me right. Everything is an argument, a refusal, a manipulation, or just straight out defiance. I try to tell myself over and over and OVER that a strong will is a good thing in life. It just might kill me trying to parent my 4yo right now. It doesn't help that he is really smart and I am really dumb right now (not being self-deprecating it's just fact that lack of sleep/putting all my energy into tiny humans/not working has reduced my intelligence for the moment). So he often will suggest a different way of doing something than I told him and it will actually be a better or more efficient plan. And then it's like....what, am I supposed to go with my own dumb plan just to show him I'm the boss? Except then it's the if I give him an inch he takes a mile situation and an hour later he's sobbing on the kitchen floor because I told him to eat his grated cheese on a plate instead of out of a bowl and I wouldn't budge on that one because the last freaking thing I need is an extra dish in my life right now.

Good thing he's cute.

Long story short, age 4.5 is fun, helpful, snuggly, adorable, sweet, hilarious, and makes me want to stab myself in the eye with a rusty fork but only sometimes.

All proud of himself for matching all the upper and lower case letters (and his favorite color is pink).

Delving DEEP into boring SAHM mommy diaries, he switched preschool classes this month. The cutoff for kindergarten in Maryland is 9/1, and his birthday is 9/23. So he will always be one of the oldest kids in his class. When he started preschool this year, he entered the 3 year old class, and turned 4 about a week after starting. His teachers recently suggested he move up to the four year old class for the remainder of the year. I was hesitant at first since he will always be the oldest and he just has to get used to it, but this is preschool and that class just happened to be a young 3 class, so by February most of them haven't turned 4 yet while Dalton is almost 4.5, and of course that's a huge difference at this age. So we moved him and he's loving his new class. Selfishly it's a pain in my ass, because it's 3 days a week vs. 2, and we had a really good play date schedule going. Now I feel like we can barely do anything. Preschool is only 2.5 hours, so you can't do much in that time period, and that's MWF, speech is Thursday, and I kind of signed up for this year off work to have FUN, not just constantly drive kids to various educational opportunities.


Chick Fil A playgroup Valentine exchange!

But school ends in mid May so then I can go back to a more relaxed schedule. I did warn you that this was an extreme SAHM first world pain paragraph.

Royce: He is so funny. I feel like going from age 2 to age 3 (he turns 3 in May) brings them from toddler to KID. Now he's this hilarious little boy with an actual personality. He's also the sweetest and is always taking care of his brother and sister as well. He idolizes Dalton and wants to be just like him. Every time we are at a park or playplace he has other parents gasping with fright at his American Ninja Warrior antics. He has a mind of his own (don't they all). He is extremely TWO and testing allllllll the boundaries.

For example, instead of napping he put on baby rainbow leg warmers and did acrobatics.

The big change is his communication book, or flip and talk. His SLP at Kennedy Krieger said recently "I know I'm a broken record but I'm just so impressed how well he is using it and remembering where words are!" in a way that felt genuine and not just the usual praise given to everyone. He uses it for humor, purposely answering things wrong and then giving the cutest mischievous grin. There have been a bunch of times where he's been able to use it to tell us something he never would have been able to without it. For example, telling us his spinach at dinner felt cold. Such a minor thing, right? But one that his impressive array of pointing, miming, and showing wouldn't have allowed him to communicate. It makes me so happy when those moments happen.

I don't have a good picture so here he is playing with his friends. 

That said - I had a bit of rose colored glasses on about it. It's still a huge learning process and requires a ton of work for the whole family. The big thing is for us to model it, and when it's just me all day, trying to juggle a baby, two kids, and use a book to demonstrate how to communicate with it - it's hard. Unlike speaking, I have to be looking over his shoulder to see what he's saying. So if I'm in the middle of something, which I basically always am, his pointing to something doesn't really facilitate communication any better until I can stop and go look. And I think the biggest thing I didn't quite understand was that it's purpose is functional communication. It's not designed to have a conversation with. I see all these cute things other two year olds are saying and it breaks my heart a bit that I will never get to know what funny, silly thoughts Royce is having at age two. But we still have tons of funny and silly moments together and I have to just appreciate those.

He wanted to touch the flag. So 

Just recently (like in the past week!), he's made massive improvements in his verbalization. He has four words he consistently says! Go, yes, car, and mama! This is just beyond incredible, I honestly haven't fully believed it yet. For 2.75 years of his life, he didn't have a single word. I'm doing my best to accept he's on his own path, but it can be hard to hear children much younger than him speaking, and kids his age using complete sentences. And it feels a little awkward sharing this milestone when people normally reach it so much earlier. But he has worked so, so hard to get here and to say we are proud of him is a huge understatement. He's also attempting speech so much more. Over the summer, he would very rarely even attempt to imitate the initial sound of a word. Now he tries to imitate us saying words all day long. Major progress!

Remington:

Taken at 4 months old for her calendar! Photo: Vince (grandpa)

9 months old and the happiest little baby! Such a delight. I really love how babies don't have attitudes yet (and she never will, right?). We had several weeks where she would just sit happily and watch everything around her and coo adorably. Then she realized the world was just way too exciting and started army crawling which rapidly developed into regular crawling and now she's crawling and pulling up on everything! Instead of going to sleep at bedtime she would just stick her little head up, smile excitedly, and start crawling around. Is there anything cuter than a little crawling baby bum?

Always standing!

She loves food! Even when not eating, she loves sitting in her high chair while we sit around the table playing a game or play doh or whatever. Otherwise, she's happily crawling around and taking everything out of cabinets or drawers. We nurse on demand but she's definitely stretching out the time in between. She even took a few ounces from bottles recently!

Typical. Always on the move. To eat things. 

Sleep is confusing. I'm still not checking the clock at night so all I know is she wakes and nurses several times. When we are home, she normally takes her morning nap in her crib and I put her in awake. If we are out, she naps in the car. In the afternoon it's more hit or miss. Sometimes she goes down in the minicrib in our bedroom awake, other times she struggles and I nurse her to sleep and lie with her (DARN WHAT A SACRIFICE). At night she acts like the crib is hot lava so we still bedshare and that's working well for us. I almost always nurse her to sleep at bedtime. She's doing pretty well on a 2/3/4 schedule, which means morning nap two hours after waking, afternoon nap three hours after waking from morning nap, and bedtime four hours after waking from the afternoon nap. Sounds confusing but I swear it's not when you are IN IT. One year from now I will have no clue what any of this means.



Me: Still training for the Baltimore Ten Miler! At this point I've forgotten half my workouts but I've met or exceeded my weekly goal of one weekday run, one other workout, and one weekend "long" run. I've included enough that I've been sore a lot, like a Body Pump class, a core bootcamp, lifting heavy weights with Eric (he always is pushing for high weights low reps on the rare occasions we exercise together).

I have that same feeling of my running improvements not being valid because they have happened so much slower than the insta world. Comparison is the thief of joy and all that. Don't get me wrong, I'm thrilled with them, it just feels awkward to type them out to share with the internets. I see all these people doing fast, long runs before their baby is even out of the fourth trimester. And then over here - it's taken me 9 months to feel like I can comfortably run 4 miles without taking significant walk breaks.

Except when I have to push this behemoth. Then it's alllllll the walk breaks. 

I guess I expected to bounce back a little faster. Right before getting pregnant, I completed an 8 week track series that focused on speedwork and I've never done anything like that. It was so hard, but I feel like my fitness improved quite a bit from it. I ran a 20 mile race and felt good just 3 days before finding out I was pregnant. And I don't mean this as a complaint AT ALL because I'm beyond grateful for that pregnancy that brought my beautiful daughter into this world! But it can be a tough pill to swallow that it truly means all those fitness gains are gone. Maybe that wouldn't be the case if I had worked out more during pregnancy but we will never know. Sometimes it just feels a tad unfair that Eric gets to keep his body intact through all this childbearing while I have to forgo all fitness, live with a csection shelf, giant feet, devil horn hair for like a year...you get the idea.

Anyway. Whining aside. Training is going well and I have seen fitness gains and now that all my childbearing is done, I can just keep improving slowly but surely.

I think I'm done word vomiting. For now.

Saturday, January 12, 2019

Credit where credit is due!



After posting my most recent blog post about my son's speech delay, I was absolutely beyond blown away by the response. My phone was blowing up with messages from people I hadn't spoken to in years, either offering support or sharing their own similar story. It's been amazing to be able to connect with other people I know that were going through their own struggles. 

As a thank you, here's a cute baby picture.

I mentioned in my post that in my experience, sharing that my child wasn't meeting a milestone on the typical timeline resulted in a certain type of response. "He'll get there in his own time." "He's a boy! He just wants to run and play." "So and so never spoke until X age and then began using sentences and was fine". These are all responses that come from a great place of support, with nothing but the best intentions. Trust me, I've typed and retyped a text to someone going through a challenge I've never dealt with, wondering how best to support them and I'm sure there's been plenty of times I've said the wrong thing. But as I mentioned, they can lend themselves to a head in the sand mindset.

The amazing thing about sharing my post was I got to hear the responses that I really needed to hear. "So and so wasn't speaking at X age... so we did a ton of therapy, practiced every single day, worked really hard as a family, fought for services, cried in the shower wondering what I had done wrong, what I could have done more of, how this will affect him throughout his life, laid awake at night, jumped up and down with crazy excitement at the smallest victories, never gave up...and he was fine!" I wish that story was out there a little more.

I now have a teeny tiny bit more respect for the big bloggers out there. I was actually overwhelmed replying to all the messages. If I didn't respond to yours, rest assured it made me cry in a happy, touching way, I intended to regroup and respond, and then a kid needed me. I got a lot of comments complimenting me for being a good mom or being brave to share - which is amazing, truly, and wonderful to hear. But I felt a bit guilty about it taking credit away from where it's truly due - Royce! I'm pretty sure an hour of therapy is equivalent to us taking the SATs. It's play based, of course, but he works hard and it doesn't end there, as we practice saying sounds with him all day every day. The PECS system he will be using to communicate (thanks to so many people who told me the name) was described as his SLP as learning a foreign language, so he really deserves alllllllll the compliments for already doing great with it in practice.



One important thing to know about Royce (probably ok to use his name now? idk) is that he is the happiest kid. And the most patient kid. Like, for real, he is #patientgoalz. I can only aspire to his level of zen and hope to get even halfway there (in like 20 years not now when I have little kids). He will point to something and just stay so cool and collected while I fumble through trying to figure out what he means and name it for him. Like any 2 year old, he likes to announce the exciting things he sees around him, but since he isn't able to yet, he relies on us to do his commentating while he directs us.
Always jumping, always patient, always sweet

Moving on to other random updates.

Running:
This week was both a win and a fail. I did five workouts (according to my FitBit), which is a huge accomplishment. However, only one of them was running, and it was with the double stroller, so a wog at best. Plus, Royce fell asleep and then didn't nap at home, so a true loss.



Workouts:
  • Half a Body Pump class (before childcare came and got me because screaming baby)
  • Free Forest hike with the kids (my FitBit counted this, therefore I count this)
  • 20 minute HIIT workout with Jackie and ALL THE KIDS AWAKE and no other adults helping
  • 2 mile double stroller hell
  • An hour of jumping with the boys at the trampoline park
Not the most traditional but I'm sore and it felt hard, TWSS. Jackie is out of town this weekend so clearly my motivation without her kind of sucks. In my defense, I was going to run on the treadmill today but the trampoline park was unexpected and my heart rate was really high the whole time, so, not doubling down.

Post HIIT

Sleep:


Bedsharing. I'm pretty sure somewhere along the way I said something about how do people do that and joke's on me, because now I love it. Dalton always ended up in our bed as a baby. Remi was starting to go down the same route. Royce never did, always slept fine in first the rock and play (don't report me to sanctimommies for this please) and then the crib, as proof that sleep is kid dependent and not a result of parenting. I never slept well when she ended up there because I was anxious. Once I just embraced it and made my bed safe with a firm mattress (took off my memory foam topper) and bedrails and no extra pillows, I started sleeping so much better. BRB knocking on all the wood. I rarely have to fully wake up, when she starts fussing to eat I just move towards her and latch her on and conk back out. No clue how many times that happens or what time it is when it happens and that's how I like it. So, yeah, I'm in the crunchy club, I think. I mean, we use cloth diapers. But I also bribe them with lollipops and Paw Patrol. Not sure what parenting label that leaves me with. I like to call myself "any port in a storm".


I feel I should update about Dalton since I haven't mentioned him! Even though my other updates were mainly just about me. He's just keeping on keeping on, saying ridiculously funny four year old things and being the best helper a mom could ever ask for.



He's also practicing his photography skills, as seen below.

I'm proud to say our Christmas tree is already down and it didn't take till March.

Also, Remi is now 7 months! Actually, 7.5. She's obsessed with food, as we do the pretentiously named baby led weaning. She can now sit up, scoot, and wants to crawl so badly but can't quite get there yet. Since she learned to sit up on New Year's Day, she's suddenly so much more chill and will happily sit on the floor and play with toys. The sweet spot for sure - able to sit, not able to move (much)!

No more sitting quietly for monthly pictures!

She's starting to get into people other than me and her brothers - giving her dear old dad a chance.


And that's all I have to say about that (for now). 

Wednesday, January 9, 2019

Speech - our story (so far)


I've gone back and forth over posting about this, but really the majority of the people who read this blog are my mom and aunt and a few other friends who are already well aware of the situation. I've "met" so many amazing people and been able to share experiences throughout writing this blog, so if anyone reading has struggled with this same issue, I would love to hear from you.

My middle child, R, is going to turn 3 in May. He's sweet, attentive to his little sister, cuddly, kind, hilariously funny, an amazing climber, best friends with his older brother, great at gymnastics and building with blocks...the list goes on. He's currently nonverbal. For reference, the rule of thumb is one word by age one. Dalton and I were both late talkers and began speaking closer to age 2. To be nonverbal while closing in on age 3 is considerably beyond the platitudes that well meaning people try to help me feel better with "he's just a late talker!" and "he's focused on moving and climbing!". Don't get me wrong, I appreciate any and every attempt to help me emotionally, but once we hit 2.5 with no words, and also had an evaluation at a private children's hospital, I had to face reality that there was something more going on.

He was evaluated by Infants and Toddlers, which is Maryland's version of early intervention services. For those who don't know, every state is required to provide early intervention services for children birth-age 3 through the local school district. His initial evaluation was at 15 months old and he began speech services shortly after that. He has made great progress. He is now able to say initial sounds of words with prompting, and shake his head for yes and no consistently. That's HUGE! However, it's been frustrating for us that none of his progress has been saying actual words.

The big question everyone has is "why?". It's the question that has me up late at night, agonizing over everything I've done from his conception to now, wondering what I could have done differently so that this skill that comes so easily to most other children is so, so difficult for my son. .

R is still very young, too young for most diagnoses. He's been evaluated by an occupational therapist and had his hearing checked - both with a clean bill of health. His receptive language is fine. If I say "R I dropped my phone can you pick it up and hand it to me?" he can hear, understand, and follow that direction. As much as any two year old follows any direction, anyway. His cognitive abilities are right where they should be. He can articulate just about any sound. He just can't speak. And there's no simple answer why - some diagnosis, some label that I could obsessively google to see when kids with this particular issue begin speaking. FYI, it's not autism (that's the second question everyone asks). He's been extensively evaluated for autism by professionals and they've determined that's not the cause of his lack of speech.

The most likely reason, according to both public and private evaluations and services, is a motor planning issue. This means that while he is able to physically make the sounds, there is some sort of breakdown with his brain telling his mouth to move his lips, tongue, and jaw in the correct way to make them purposefully and meaningfully. That's the broad explanation and his therapist will be working to hone in on exactly what is going on and how best to address it.

With his progress plateauing and the public services just doing the same old, same old every week, we sought private therapy. We are lucky to live just a few miles from Kennedy Krieger, which is a children's hospital that provides various therapies, run by Johns Hopkins. People come from all over to get evaluated and participate in therapy there. There's a huge waiting list. He was evaluated in November and began therapy last week! He will receive weekly therapy. The best part is that they plan to work with him to identify just what is preventing him from speaking, so they can target the therapy appropriately. Equally exciting, within about two weeks he should have a communication book. This is a low tech communication device that will allow him to actually converse with us. See, he's great at nonverbal communication. If he wants milk, he will get a cup, get out the milk jug, come find me or Eric and give them to us. Even people who don't know him well usually can understand what he wants and he fits right in to places like gymnastics or YMCA childcare and no one realizes he has this special need.

However, the low tech communication device will allow him to actually talk with us. He can tell us what his favorite animal at the zoo is while we sit around the dinner table. Things like that. Going beyond just bringing us the milk to pour. It will also allow him to communicate in sentences. He will learn by pointing to the pictures to communicate "I want to drink milk", the idea being that his language will develop at an age appropriate level, even if his speech is behind. It will also increase his vocabulary.

At his evaluation, they talked about how successful kids are in using these devices in school, and how it could be adapted to use in Kindergarten, and I started crying. No one wants their kid to be the "different" one, the one you have to pray he gets a teacher who is willing to go above and beyond to include him, the one who isn't able to do what his peers do. Many people have a story of how someone they know never said a word until X age and then suddenly started talking in sentences. Up until this appointment I had thought that would be us. I didn't even realize how much I believed that until faced with the idea of him being unable to speak in Kindergarten. Of course he could make huge progress and be dismissed from speech by then, but I also need to be realistic that this may not be the case and we may have a long road ahead of us. I think sometimes people are so focused on sharing these hopeful stories with me, and again, with the best of intentions. It's great to be optimistic, but it's not great to live with your head in the clouds and not be realistic about what is to come. I know he will speak, and I know Eric and I will do absolutely everything we can to help him get there and help him communicate in the meantime. But I don't want to live in a fantasy world where it will just happen magically one day.

Another sort of confusing thing is that R has this need, but in the special education world, he's "not needy enough". This is what I've been told when I have pushed to get him more public services (we are just gearing up to fight that battle as he approaches age 3, which is when children are old enough to get an IEP). People are quick to remind us "yes, but his cognitive abilities are fine!" "you're lucky he doesn't have X issue as well". Yes, and that's wonderful, and we are grateful. I hesitated even using the term "special needs child" in this post, because I feel like it is stealing sympathy from those more deserving of it. It's not a competition though, and I'm not going to back down seeking out anything and everything to help my child just because there are other needier children as well. He can't speak, and that inability is only going to impact his life more and more every single day.

I haven't used his name or picture in this post so that it won't come up on a google search one day (I read GOMI too much). Not that it's shameful or anything, but I think it's up to him if he wants to fully share one day.

So that's where we are at. On New Year's Eve, as we did the kid's Netflix countdowns, he happily joined in the counting, saying "Ah" for each number right along with us. I'm feeling very hopeful about his new therapy at Kennedy Krieger and just praying so hard that on NYE 2019 he's able to truly count with us.

Sunday, January 6, 2019

First half of 2019 running goals

Happy New Year!

Apparently the only picture I took of New Year's Eve

I was a little weirdly sad at saying goodbye to 2018. The years your kids are born are really special, and, spoiler alert, this was the last one I'll ever have. But time marches on and all, so we did a few Netflix kids countdowns around 6:30pm and I went to sleep around 10pm (Eric was bartending). To celebrate the holiday I looked at my phone whenever Remi woke up (I normally have a strict policy I do not check the time until morning). At some point it was in the 12am hour so I was like yay 2019! Wild times here.

But 2019 is already off to an exciting start. I signed up for a race! My running buddy Jackie and I have a fantastic history of peer pressuring each other to do athletic events, most notably, GORUCK. That's this crazy thing where you march literally all freaking night (in our case 10pm to around noon the following day) with a backpack full of bricks (not kidding) and do things like jump in the Annapolis harbor and carry a telephone pole for hours.



Recaps of that insane night:
http://chocolateismylife-us.blogspot.com/2012/04/when-porto-potty-is-step-up.html
http://chocolateismylife-us.blogspot.com/2012/04/goruck-frightening-visuals.html

Runner up: doing a half ironman triathlon.

Current day: the Baltimore 10 miler. Our wild and crazy challenges are over for right now. A ten mile race is plenty challenging for the moment.


When Royce was only 5 months old, I did a half marathon (with Jackie!). Now, I have no idea how I managed that. While it was a good experience, I knew going into round 3 I didn't want to train for any races while in the trenches of breastfeeding. It's just too much on my body. Racing could wait until the baby was a year old. While I hope to still be nursing then, it's not the same as a five month old who depends on me for 100% of their nutrition.

This race is exactly one week after Remington turns one. It's just that perfect.

It's also a local favorite. I've done it five times before (2010, 2011, 2012, 2013, and 2015 as my first race back when Dalton was 8 months old).

Our training plan is pretty loose, and I can't take any credit, Jackie came up with it all. One long run on the weekend, one weekday run, and one non running workout weekly. I hope some weeks I'll be able to do more, but in this season of life being home full time with a 4 year old, 2.5 year old and 7  month old, that's about all I can commit to. (My 4yo does go to preschool two mornings a week.)
Those rare moments when everyone is playing together nicely.


The jogging stroller only holds two of them, there's no guarantee of a double nap when I can run (Dalton has quiet time in his room), and Eric is coaching basketball so he's normally not home until past bedtime. The other option is getting up before he leaves for work, but that's just not happening. We still have a lot of night time wakeups around here and I need any sleep I can get.

Monthly long run length goals:
January: five miles (already met!)
February: 6 miles
March: 7 miles
April: 8 miles
mid May: 9 miles

And the race is June 1!


Last week was a bit of a cheat since it was a holiday week and I had Eric around Monday and Tuesday and Jackie was off work, but we are off to a great start. We did 4.5 miles Tuesday. We had intended for 3-3.5, but when we stopped at our cars after completing 3, a miracle occurred. I checked my phone and Eric had sent me this picture.



We hadn't even bothered to try a bottle with Remi since she had refused them while I was maid of honor in Casi's wedding on October 20. (Side note we are like 90% of the way there convincing Casi to do the race.) But Eric figured it couldn't hurt and she took it! She only had about an ounce, but it was enough to sustain her and she went to sleep after and I was so excited we ran another 1.5 miles! She took another ounce while I met Casi and Carolyn for coffee the next day and I was out of the house for a good four hours of adult time. Exciting stuff around here!

At Loch Raven, one of our favorite routes, during our 4.5 miler

Saturday, we did 5 miles! All of our runs now include some walking in the total mileage. We used to not count that, but times have changed. We also ran some pretty big hills for both of those, since the B10 is notoriously hilly. Even with walking, our 5 mile pace was 10:50, which I'm proud of!

Non running workouts: 15 min low impact HIIT, 10 minute full body strength (both Peloton videos)
Weekday run: 2 mile double stroller walk/run while Dalton was at preschool (this was more like 50/50 walking and running with huge hills) + 1 treadmill mile during nap later that day

Of course it's always easiest to stay motivated at the start of something like this, but being off to a solid start feels good.