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.

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.

  • 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.



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:

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.