Last week Bracken and I went to the lighthouse beach (that’s what we refer to it as) with friends. (We had an oceanside picnic, went on a hike, and it felt simply wonderful to move around in the outdoors and breathe that fresh ocean air!) It reminded me of being there last January with other friends of ours, and got me thinking over this past year. Many of you have asked me for updates about Bracken and his speech. He has made such incredible progress in the past year! I feel like writing this post is overdue, but my days are very full and having the time and space (and quiet) to write about something that I have much to say about… can be hard to come by. (Thus why I’m staying up late writing this.) Also, I tend to share a lot. Sometimes perhaps too much. I’m trying to find my balance with all that. I wrote a very raw post last year about Bracken’s struggle with apraxia of speech. Some felt sharing so much about my child might not be very respectful of his privacy, like it was a disservice to him. To that, I simply say that anything I ever share in this space is not with the intention to ever hurt him with anything he would read here (that’s the last thing in the world I would ever want), but to share our family’s struggles honestly in the hopes that it will help other families who are also struggling. I feel sharing our experience could help someone reading this, but not sharing wouldn’t help anyone.
Bracken started speech therapy in September 2014 (a month before he turned four) at the Eugene Hearing and Speech Center. He was diagnosed with apraxia of speech, a neurological speech disorder. We did weekly speech therapy. Then the center closed, without warning, in February 2015. I was shocked and quickly searched out a new speech therapist for Bracken. It turned out to be a blessing in disguise because the next speech therapist we connected with had a great connection with Bracken and was very effective in working with him. His first speech therapist was very kind, but didn’t have hardly any experience working with apraxia of speech, and also wasn’t very confident in tackling it. He seemed to feel apraxia was a very big deal and didn’t have a very positive outlook for us. (When Bracken came, he rated him a two for severe impairment and when he left, he rated him a two. I felt we had made so much more progress than that and I nearly cried when I saw the rating.) We had an evaluation in March and started working with the new speech therapist in April 2015. Bracken’s second speech therapist had worked with children with apraxia of speech before, had been successful in treating it, and had nothing but a good outlook for us. Her attitude alone gave me so much hope! She was so supportive and encouraging. She had a gift working with kids and was very effective at getting Bracken to actually practice speech, which had been hit or miss before, all the while having fun and looking forward to his next speech session.
When Bracken turned five in October, his speech therapist recommended bumping up his weekly speech therapy sessions to twice a week. She didn’t recommend twice a week sessions with younger kids, but once they turned five she felt it would be a good idea. We’ve been doing speech therapy twice a week since October and bring our “homework” home to work on after each session. We’ve been working with the new speech therapist for almost a year now. When she realized recently that she had only been working with Bracken for a year, she was blown away by the progress he’s made in that amount of time. (I’ve been happy to hear family and friends so astonished with Bracken’s speech and how much progress he has made.) She told me she had never made that much progress in that amount of time with any other child she’s worked with. She said he went from having severe apraxia of speech to having moderate apraxia of speech. She credits his progress with how much we practice at home, but I give her a lot of credit. Without her, we wouldn’t know where to start or what to practice. (Of course none of it would be possible without Bracken’s hard work, he has worked so very hard to get where he is!) I’ve watched how she has worked with Bracken, how she has made practicing fun, and I have learned so much from her that I’ve applied to practicing speech with him. She has been such a blessing in our life and I’m incredibly grateful for her.
I have to say, It’s been quite a journey. When I reflect on the past year, there’s been a lot of progress made and it’s also been quite challenging. Apraxia of speech has been a hard road for Bracken and it’s been hard for our whole family. Really hard. Having a neurological speech disorder is incredibly frustrating (I can’t speak from experience, but I can imagine how Bracken feels) and tantrums are a way to vent that fustration. Quite a few people who know Bracken have found it hard to believe that he throws tantrums like he does (after reading my post last winter), and they hardly believe me. One friend introduced Bracken to her husband once as the “happiest little boy she ever knew.” He can be the brightest, happiest kid so people are shocked to hear about his struggles. Being at home, surrounded by people who love you unconditionally, feels like the safest place to release frustration, so the tantrums don’t occur as often out and about.
The tantrums that I was startled about in the beginning, became something I understood to be a natural part of apraxia of speech. A huge lesson for me has been to detach from them. What I mean by that is, to keep on steadily loving with all of my heart, and to not get emotionally tangled in the tantrum. If I overreact to the tantrums, it makes things worse. That sounds so obvious, and it is. (It reminds me of the de-escalation strategies that we learned one day at my self-defense class.) I need to be the calm in the midst of the storm and sometimes that is easier said than done. It sounds simple enough, but it takes a lot of practice. Also, I need to forget about the whys and hows sometimes. No, the outside reason for the tantrum doesn’t make any sense, No, it’s not behavior I want to encourage. Yes, he’s frustrated. Yes, he needs to let it out and then he’ll feel better. There have been times I’ve looked at him while he was completely upset and I’ve wrapped him up in my arms (when he’s let me) and rocked him in the rocking chair and he’s cried and cried. It’s hard stuff he’s dealing with, and as hard as it is to be dealing with a tantrum, it’s harder to be the one having one.
Maybe tantrums don’t sound like a big deal, but the ones we’ve experienced are something you have to live (again and again) to fully understand where we’re coming from. How do I describe the tantrums? The tantrums felt like… going about your daily business, humming a little tune, and suddenly having a bomb go off in your house over a seemingly tiny thing, with screaming and yelling and flailing. We would be going along having a fine day and then bam. Anything could trigger one. It became hard to relax because you never knew when another bomb was going to go off. One moment you would be talking to a reasonable, calm child and the next it would feel like you were arguing with a drunk person. (I learned to not argue or try to reason during tantrums, it wasn’t effective. Calm detachment was key.)
It’s not easy to express how hard it was at times. I dealt with the majority of the tantrums and even when I’d had my limit for the day, I was still there. There have been rougher periods and calmer ones. Rough patches where friends would ask how we were doing and I would put on a brave face, but have to be honest in saying “It’s been hard.” But what does that mean, really? I’m writing about it today because I hope there are people out there who could benefit from these words, and I humbly know there are others with struggles much bigger than ours.
I’ve been trying and trying to put the experience into words, but still don’t feel like I can. There are certain things I write about, this being one of them, that feel so big, and the words are hard to find. What it felt like is that after such a hard stretch of time, I reached a point where I felt myself breaking. Not in a bad way, though, if that makes any sense. I felt a deeper surrender than I’ve ever felt before and the only word that comes to mind is: grace. Not that I’m in a constant state of grace, but that somehow something has switched inside of me. Sometimes things are so hard we transcend them. That’s what it feels like. There were times Bracken took his frustration out on us and then Jeff and I took it out on each other and my family, the dearest thing to me, felt like it was being torn apart. Our family having a good day or a bad day became completely dependent upon how many tantrums had happened that day.
I reached a state of exhaustion where I couldn’t resist the tantrums or contain them or even make sense of them. I just had to roll with them. (We all learned ways to cope and Jeff often used humor to diffuse the situation.) If I reacted to them emotionally, I could say something I’d regret. I still remember hurtful things that people said to me as a child and Jeff does too, they’ve stayed with us all our lives, and my mom reminded me to always “be careful of what you say.” I took that advice to heart and didn’t want to say anything I didn’t mean in a moment of frustration. I wanted to like the person I was and also be an example to Bracken of how to act in the midst of frustration. (It’s easy to say how, but much harder to be a living example.) All I wanted was peace in my family and the discord that was happening was an old story that I didn’t have the energy to live anymore.
Jeff and I have quite a few things in common, but the main thing we share is just how much we love Bracken. We keep loving that boy, that’s the easy part, and keep helping him in every way we can. His tantrums are not who he is, they are something he struggles with due to apraxia of speech. Who he is, is a bright, creative, loving, joyful, funny, thoughtful and radiant five year old who I love more than anything in this world. He is the light of our life and I’m so blessed to be his mom. If someone reading this feels I am saying a negative word about him, I’m merely sharing how hard his struggles have been, and that of our family’s, and how hard he is constantly working to overcome them. I don’t like to see anyone suffer, but most especially children. I admire many things about Bracken, one of them being that he has determination unlike any I’ve ever seen before. Only because he has worked so incredibly hard, has he made this much progress in the past year! We still have a long ways to go, but in reflecting over the past year I can see just how very far we’ve come to get where we are now.
We’ve entered a much more peaceful time with our family now. We’ve had stretches where the tantrums have ceased all together. (I swear I can almost feel our nervous systems repairing themselves after so much stress.) Bracken’s day to day frustration levels have gone down dramatically. I wasn’t sure if it was his speech improving so his frustration levels were going down, him getting older, simply leaving that phase behind, adding more nutrient dense foods to our diet or the changes in me having something to do with it. Maybe it’s a combination of things. I’d like to think the rough patches with days full of tantrums are behind us, but I also know there are ebbs and flows. I do know that I’m stronger than I ever knew I could be, we’ve all had to dig deep, and I can face what life brings me if I simply do my best moment to moment. Instead of being torn apart, our family has become stronger.
I know Bracken’s speech therapist has worked with other children with apraxia of speech and their speech improved so much that later you wouldn’t have known that they ever had it. I hope this past year will be a time that Bracken looks back on and admires how hard he worked, that his experience with apraxia of speech will make him realize how incredibly strong he is. That as he moves forward in life, he won’t be afraid to tackle anything, no matter how hard because of that inner strength. Even on the difficult days, I know there will be blessings in disguise to everything we’ve gone through as a family, and I look forward to watching them unfold. Our family is just so happy about the incredible progress that’s been made the past year, to better understand all the amazing thoughts and ideas that Bracken has to express to us, and I can only imagine what another year’s time will bring.