We’ve all seen a movie or read a book where a character goes into shock. Usually some sort of major trauma happens and the person shuts down, a catatonic stare on his or her face. The person usually has to be wrapped in a blanket and given sedatives to function again. But what happens when, instead of a major, instant trauma, you live inside a constant, high-level stress hanging over you for an extended period of time?
I feel like that has been how we have been living for the past 14 months. Not that it’s been a bad 14 months- on the contrary, it has been filled with love and many victories- but it’s definitely apparent that our journey has taken its toll as well.
The last entry I wrote months ago was Finn’s activation and I have contemplated many times that being the final entry I wrote. It had a kind of symmetry to it with the first blog being when we found out Finn was deaf and the last being the first time he heard sound, but that seems misleading. A deaf child’s activation is, in many ways, just the beginning. If my purpose of starting this blog was to keep family and friends informed and to have place where we can look back at Finn’s journey, his activation is a completely inappropriate place to end. But man, was it tempting to cut out at least one thing on the list of things to keep up with in our lives.
So what’s been happening since activation? For one thing, Finn is doing marvelously with hearing! When trying to think about his progress, take into account his “hearing age”. He was activated on March 14th, so he is about 3 and a half months old when it comes to hearing/speaking, but if you compared him with a hearing 3 and a half month old, he is doing things far beyond that. His AVT therapist is amazing and Finn adores him. He is recognizing all the Ling sounds and even starting to imitate:
For speech therapy, he does the weekly AVT sessions and weekly sessions with an SLP. He also continues to work on his overall development and ASL with his weekly developmental specialist/Teacher of the Deaf visits, along with one class a week school at The Learning Center for the Deaf. These services mainly focus on strengthening his hearing and speaking skills.
Then there are the motor skills…
I have written in past entries about being a bit concerned about Finn’s development outside of what’s associated with his deafness. As of his 1st birthday, that concern definitely grew exponentially and no matter how many times we heard or tried to tell ourselves to “just focus on the fact that he is progressing, no matter oh slowly” was alleviating our worries.
When he turned one in April, Finn was still struggling to do even some basics like crawl and hold his head up for extended periods of time. We had been cleared by neurology (if by “cleared” you mean, they couldn’t really pinpoint anything solidly wrong, but knew something was “off”) and neither his pediatrician nor Early Intervention specialists could really pinpoint any issue besides “low muscle tone” though everyone also seemed to think there might be something else – whether that “something else” be major or minor, no one seemed to know.
We had been trying to work on getting Finn into OT since January- thinking that maybe it was a vestibular issue (balance center, near the ear), but with no clear indicators, that option wasn’t exactly a definite solution. We did finally end up getting Finn into OT at Boston Children’s Hospital (our second home) and he has been going twice a week since April. He also has weekly Physical Therapy through Early Intervention.
Since April, Finn has definitely made leaps in his development. He crawls with confidence, he pulls himself up on the couch and his crib (and over it one scary night!) and cruises along the edge of things with a look of complete concentration on his face. But still, there are things that worry us. He falls quite a lot- his body seems to work against his mind on almost every movement he makes. He rarely signs, he doesn’t even wave. His arms, back, & legs still go into hyper-extension whenever he is excited or overly happy or upset. And everyone is baffled. Opinions range from him just being delayed, stemming from his low muscle tone, to the vestibular issue discussed earlier, to a new theory of a possible Sensory Processing Disorder. With every thought about what the main issue is, we add a new strategy or therapy. We are brushing Finn with a soft-bristled brush every two hours of the day (further info about that here) and following that up each time with joint compressions to try to “reset” his sensory system. We also bring sensory play into everyday life as much as we can (most of these activities are just plain fun anyway!).
We also have Finn signed up to do Hippotherapy (horseback therapy) to help with balance. We are contemplating doing CranioSacral Therapy (click it to read what that is) in order to help regulate him – even if it sounds a bit kookie, we are willing to try anything that could help Finn out in his development.
All this in addition to keeping up with his other 7 weekly sessions of therapy. I don’t say this to start a woe-is-me campaign. Parents do whatever it takes for their child and a few therapy sessions a week is nothing compared to some. For me, the bigger layer of stress is not knowing when/if the other shoe will drop. We still have no idea what caused Finn’s deafness and as I have written about before, getting blindsided by that news when Finn was born, has probably made me extra-sensitive to this feeling of foreboding, but until there is some concrete explanation for the global motor delays we are seeing in Finn, there will be a very real fear about finding out that something else is seriously wrong. Questions plague my mind constantly: Why doesn’t he seem to have neck control all the time? Why do parts of his body fatigue SO quickly? Why can he use fine motor skills to pick up a grain of rice, but then have trouble bending his elbows to pick up his milk? Why can’t he bang two toys together without a lot of guidance and help? Even things that most parents would probably write off, cause concern: Is the fact that he still wakes up at least once a night a symptom or is he just a bad sleeper? When he cries so hard over something seemingly small, is it just because he is deaf or is he super sensitive to something?
This week he woke up with a couple of bug bites- granted they were pretty huge and firm- and I wanted to rush him to the pediatrician because I thought maybe they weren’t just bug bites, maybe there was something more to them! After calming down and thinking rationally and seeing him in one of the best moods in a long time, I felt better, but it’s little, constant concerns like this that add up.
Confession time. Dan & I have dealt with this in different ways, as I think all couples do, but for me at least, there have been moments were I felt like I couldn’t do it anymore. I felt like fleeing. This year – on top of an increasingly frustrating profession in teaching, on top of having a high energy, attention-demanding 5 year old, on top of trying to be a wife, daughter, friend, professional, etc. etc. has at some points, been too much. I confess this here because I want others out there who feel that to understand that it’s OK. I’m not saying everything is going to turn out OK, I’m just saying that you needn’t have guilt on top of everything else when you have thoughts that can range from vaguely negative to downright scary at times. But I have also learned, you can’t push these down either. Whatever means work for you, my suggestion is to deal with the feelings before they stat to take over. Enough on that for now…
Don’t worry, most days we are not sitting here brooding over what may come! Most days we are enjoying seeing Finn grow and learn and seeing he and Kayla start to really play together and seeing them bonding (the very tight bond it is for such young ages) and appreciating what we have available to us that wasn’t available in the past.
His MAPping sessions have gone really well. Each session, he has made progress and has been “turned up”. After his May session, he was finally on a program that had an obvious effect on his every day hearing. That is one thing that I’d want other CI parents to know. After activation and even for the first couple of MAPping sessions, most of the sounds (at least in our case) were still not that accessible to Finn. The programs are kept really low at first, so that the kids gradually hear more and more. It wasn’t until the May session that we started noticing that Finn would turn to our voices in the room or noises that were further than just a foot in front of him. As with everything else, it is a marathon, not a sprint.
His audiologist is very, very happy with his progress and we are extremely happy we went with Advanced Bionics. Finn bit through one of his processors and another one of the batteries broke mysteriously and AB replaced them OVERNIGHT. We also had a bit of a conundrum when trying to figure out how to keep the CIs on Finn’s heads. Wear time is SUPER important (he can only learn to hear if he is actually hearing) and we went through a few different things before finding something that worked for us. A lot of people use the shirt clips when the kids are so young and those are probably absolutely fine. One small downside is that then the sounds the kids are getting are coming at them from their back- that’s where the clips go. So it would be like hearing with your shoulder blades. This is not a huge deal, but Dan was determined that he could make something that would make it so Finn would hear from a more “natural” direction. We tried wig tape to keep the processors behind his ears, but that was too painful for us to be taking off and putting on everytime he was napping/sleeping. We were also having a hard time keeping the magnets from falling off, especially when he was doing OT or PT and was on his back. Dan did a little research online and found these headband things that someone was selling (for quite a lot of money) in Australia and figured he’d give it a whirl. This resulted in Finn’s bling.
Finn is very lucky to have a dad who was thoughtful and clever enough to come up with this (god knows I can barely thread a needle!) and who has given over all of his week days to Finn while I am at work. I hope to be a bit more useful over this summer break!
Next steps include continuing everything we have been doing, booking an appointment at Children’s to do a full developmental assessment, more genetic testing, and a neurology follow up. My hope is that by the end of summer we either have some answers or the services we already have in place have made a significant enough impact on his development that we can breath a little easier.
In the meantime, we need to make a concerted effort to enjoy summer and to unwind! Easier said than done, but I think over the last few weeks Dan and I have both come to the realization that we need to be healthier, both mentally and physically, and also easier and kinder to ourselves. The question I started out asking about what happens when you live with the amount of stress we’ve had for so long is a question that I don’t want to know the answer to- I think we have gotten to a point multiple times recently where the answer to that question brought us to a place that was on the verge of disaster and now that we are aware, we will do what we do best and make a plan of attack and follow it. I hope other parents reading this, whether you have a child with hearing loss, CIs, autism, development delays, or any other issue (or just a parent facing the impossibilities of raising children in general!) can take from this that everyone has their breaking point. No matter how much support, how many small victories, feeling overwhelmed and even a little (or a lot) out-of-your-mind crazy, is something we will all experience. None of us are alone and I am thankful for the people in my life who pick me up when I need it. We all need someone and can’t do it alone. We need to celebrate every victory, big or small and blow raspberries at our defeats:
We also need to remember to laugh at ourselves as much as possible:
And just enjoy laughing in general:
Happy Summer, Happy 4th everyone!