Bennett D: All Things Speech

I've been wanting to write about Bennett's speech challenges for awhile now, but my pride kept getting in the way and I didn't really want to put it out there that our child struggles. Then I read my college friend Cindy's beautiful post about her daughter's struggles and felt so validated that I knew it was time. Time to put my thoughts into words. Time to shed light on some darkness. Time to find the "me too" in our situation.

I don't speak about this lightly as I recognize that Bennett is his own person who will, one day, read these posts (hi much older Bennett, I bet you're pretty awesome...you've always been pretty awesome). So this is more my side of the story and my feelings regarding the areas of struggle for our wee one.

One disclaimer my friend Cindy gave is the realization that, in light of all the special challenges faced by so many kiddos, we want to recognize that our kids' challenges are minor. But, nonetheless, they are real to us. So thanks, Cindy, for so graciously giving space to talking about minor and major hard things.

When Bennett was about 15 months old, it was subtly pointed out to me that perhaps he was behind in his speech. At the time, he was only saying "mama" and "dada" though I'm not convinced that he conceptually knew what those words meant. His wonderful daycare provider was a speech therapist and she gently encouraged us to seek out other assistance when, at 18 months, he was not making any progress in regards to speech development. 

Last January, when Bennett was 19 months, I made the call to our local early childhood support agency and choked back tears as I explained my concerns. An evaluation was scheduled and a whole slew of professionals descended upon our house to evaluate our little boy.

The day of the evaluation he actually had a fever and was much less babbly than normal. The final question during the evaluation was, "What keeps you up at night in regards to his speech?" Of course, being the emotional momma that I am, I started crying and explained that I just want him to be normal. And I feared that his lack of speech would prevent a "normal" life. 

I could talk for DAYS about all the wonderful people at TARC. They have been encouraging when they need to be encouraging, full of knowledge and resources, and so patient as we navigate these waters. Sweet Molly, our speech therapist who I want to adopt as an aunt to our kids, has been phenomenal. I know more about speech development than I ever thought was possible (input is my number one strength, heyo StrengthsQuest...this means I love information) and she has tirelessly given us resources and strategies as we work and work and work to help Bennett with his speech. 

So where am I going with all of this?

On this journey, I have gained a great deal of empathy towards parents of children with special needs. I teach special education so I always thought myself to be a woman of compassion. Oh my, was I ever wrong. But I'm learning. For some kiddos, their challenges are broad and dip into many areas. For other kiddos, their challenges are so specific and they are able to, for the most part, function "normally" (whatever that means). Bennett falls into the latter category. I've learned that his exceptionality does not define him (nor should anyone's exceptionality define them!). He's a smart cookie (all parents say that, right?). He knows when Molly and I are talking about his speech development. And he knows when he wants to work on it and when he's just not that interested. Just the other day, Molly and I were trying to figure out how he pronounced the "h" sound. Molly picked up one of his horses and asked him what it was. Bennett, the sly little stinker, just said, "Nope!" Winning. 

He's about to age out of his time with TARC and will be evaluated soon to be placed on an actual IEP through our home district. I know with that means. I've written and implemented countless IEPs. But it feels different when it's MY kid who will be on the receiving end. 

I think I needed a swift kick in the booty in regards to my thoughts about special education. Bennett's a cool, smart, perceptive, timid, loud, slightly clumsy, and sweet little boy. He's made tons of progress in his speech but we still have a long way to go. We're in it for the long haul. And some days that makes me tearful, but as of lately, it's made me happily expectant. This is not his whole story. This is just a snippet of his story. A mere blip of who he is. If he is able to be more compassionate as a result of this experience, then it was totally worth it. May we, with every day we get with him, push him to see the best in others and not just their abilities or disabilities.

All of my love and more to all you parents. It's a tough job we have, but we wouldn't trade it for the world, am I right? 

XOXO 

Post-Partum Round 2, Part 1

Hi friends. It's been awhile. But we're all still kickin' over here. Just still adjusting to life with another tiny human to care for.

The past four months have been so redeeming and so humbling. Many of you have reached out to me to see how things are going with baby number 2 and it has meant the world. I figure I owe it to you all to update you on our status.

Sweet Finley Margaret entered the world right on schedule. Well, right on MY schedule. Which is mostly hilarious because things rarely go according to my schedule. I joked with some friends in the week leading up to the induction that I really wanted her here by noon so I could have lunch and relax for the rest of the day in the recovery room. AND IT HAPPENED. Finley stormed into the world at 11:58 am. Around 11:50, mid-push, I made a joke to the nurses and my doctor that I didn't think she'd be here by noon and they informed me that, actually, she probably would. So yes. I enjoyed a lunch of chicken strips, fries, and chocolate cake while gazing at our petite little miss.

Our hospital stay was dreamy. Well, about as dreamy as a post-partum hospital stay could be. My body recovered quickly and  I was able to sleep on my back which felt AMAZING.

The next thing I share I only do because I want others to be aware. This was, without question, the scariest parenting moment for me. And, had I known what I know now, it wouldn't have been nearly as terrifying.

During our second night at the hospital, we sent Finley to the nursery so Dan and I could get some sleep (to be honest, we sent Finley both nights...no shame...in my weary state Dan reminded me that we would care for Finley nearly every night for the next 18 years, so letting her stay in the nursery in between feedings her first two nights was not going to scar her...). Around 1:30 am our night nurse popped in and said, "We want you to know that Finley is hooked up to monitors and we are running some tests. It seems that she had a seizure and we want to know what's going on."

In that split-second, I knew I had a choice to make. I could either keep my cool or completely lose it and risk not being able to stop crying. I truly believe the Lord took over in that moment and helped me remain calm. I asked if I could see her. Dan and I walked down the hall to the nursery and saw our helpless little munchkin hooked up to a handful of monitors. Her oxygen had also dropped so she was receiving breathing assistance as well.

I asked if I could nurse her and they let me. Then one of the sweetest things happened and her oxygen levels instantly went up as I nursed her. They wanted to keep monitoring her through the night and hadn't gotten any test results back so they encouraged us to go back to our room to rest and then we'd find out more in the morning.

By the grace of God I was able to actually sleep. The next morning the test results were back but nothing was conclusive. Since a doctor was not present and only two nurses had observed the incident, we didn't even know what we were to be watching for. The pediatric hospitalist assured us that everything was fine and that it was probably just an underdeveloped nervous system. Even so, I left the hospital that day feeling uneasy.

Fast forward one week. Finley, in a handful of situations, had, what I refer to as, "twitching incidents." Her arms and legs would twitch on and off when she was sleeping. It didn't look like it was hurting her, but it was certainly not normal infant twitches. Once more she had an incident when I was at our wonderful local breastfeeding clinic. The lactation consultant was concerned and called our pediatrician. I had to really advocate for sweet Fin to be seen soon but we were able to schedule an appointment for the following afternoon. The morning of the appointment Finley had another twitching incident and I quickly took a video of it.

After what seemed like forever, we were finally in the exam room with our WONDERFUL pediatrician. We explained what we had been noticing and showed her the video of Finley twitching. A light bulb went on for her and she was able to give us a name. Finley had neonatal sleep myclonus. It's a benign condition that basically means her nervous system is underdeveloped. Our pediatrician told us it would fix itself in the next month or two. And you know what?! She was right. Right about when Finley was two months old I noticed that I hadn't seen any twitching for awhile. And she has been healthy and fine ever since.

I recognize that that was not the most interesting post on this ol' blog. But it did lend itself to multiple life lessons.
1. You've GOT to advocate for your kid. If YOU think something is off, you do what it takes to find answers. You are the parent and you know your kid better than anyone else. I pushed to let Finley be seen that day and I'm so thankful I did. I really didn't care that I was perhaps coming across as a hyper-concerned momma bear. Our co-pay that day was $85 but it was the best $85 we could have spent because it gave us peace of mind that everything was going to be okay.
2. DO NOT DO YOUR OWN INTERNET RESEARCH. :) Due to my experience with Bennett, I had learned that doing my own internet research would only increase my anxiety. So I stayed away from all google search bars and it was the best decision.
3. We are so thankful everything checked out. And we know that Finley will likely experience things that are far more traumatic than this incident. Either way, this was the beginning of her story. We are thankful for the nurses who first noticed the twitching, the lactation consultant who encouraged me to seek out more answers, and the pediatrician who put our minds at ease.
4. Finley is not MINE. She was given to us by our Lord and Savior and, during the week that I thought something very serious was wrong with her, I had to remind myself over and over that, as a parent, one of the best things I could do for her is to keep giving her back to the Lord.

I promise the next post will be more inspiring or at least entertaining, but this was part of my story and I didn't want to leave it out. Thanks, faithful ones, for reading.