Tag: therapy

  • National Physiotherapy Month 2020

    National Physiotherapy Month 2020

    Originally published on http://www.itsybitsbalebusta.com
    05/2020

    May is National Physiotherapy Month! Before February, I hadn’t actually participated in a physio session with one of my kids. SLP, OT, ABA, Music Therapy yes, all part of our therapy schedule. We’d also been through the NICU, surgeries and surgical procedures, and at one point, feeding therapy too, but physio wasn’t a realm I was familiar with.

    Just a few hours after E’s birth, a pediatrician visited our recovery room to examine her. He asked questions about our medical history and when we shared our son’s diagnosis he began to tell us about early intervention programs for E and the importance of keeping an eye out for red flags, so that she could get whatever support necessary, as soon as possible. He didn’t have to tell me any of this – from the minute I saw the positive on the pregnancy test, my red flag radar was on high alert. Due to the fact that Y had been diagnosed so early, he was able to begin receiving services from the age of two and it made a significant difference in the trajectory of his development. E’s ability to make eye contact, smile socially, imitate, speak, and use gestures brought with it a sense of reassurance. Despite all of it, I couldn’t get past the fact that she just wasn’t moving as much as her brothers were at a similar age.

    I tried not to compare but as the weeks went on, it became more pronounced and I made a doctor’s appointment for her. Our doctor felt confident at that time that she was alright but assured me that if I still had concerns in a month or so, that she’d re-evaluate. At the next appointment I raised my concerns again. She was almost a year old and not crawling, pulling herself up to sit or pulling to stand, standing independently, or cruising at all. She could roll and she could scoot from point A to B, but that was about the extent of it. Knowing my track record in identifying concerns with the kids, the doctor said that if I felt a physio assessment was necessary, she would support that and help us to arrange it. I really, really appreciated the fact that I didn’t have to stand there advocating my heart out and agreed to go ahead with the assessment. 

    I initially told M that I didn’t want to share it with anyone. We’re always so open about whatever supports or services the boys are accessing and I don’t usually feel compelled to hold anything like this back, but this time I just didn’t want to get into it with anyone. I didn’t want to hear that I’m just looking for something to be wrong or that she’s fine and in time she’ll catch up and, “to just relax.” Having to nod and listen to the stories about someone’s cousin or child who was also behind and then woke up one morning and was suddenly totally caught up was not something I was willing to go through this time. As well meaning as everyone is, I just wanted to focus my energy on the sessions themselves rather than having to discuss them. I know that walking isn’t a concern until 18 months, but if she hasn’t mastered the other skills, she won’t have the foundation necessary to literally take the next steps.

    I thought that maybe this chapter of Motherhood wouldn’t bring along with it therapies and services. N’s first 2 years were spent in and out of hospitals and specialist appointments, with an OT visiting our home to work with him at just months old. Y has been accessing support and services for as long as I can remember – everything from SLP to OT, Music Therapy, and ABA. I remember holding N, only months old, on our living room floor while the speech therapist did everything she could to engage Y and encourage him to attend to the session. I thought this time around I could skip all of that. That for the first time I could just be Mom, without the side of care coordinator and stand-in therapist between sessions, surrounded by pamphlets and worksheets and exercises to work on with my baby. I felt so guilty for feeling this way, but at the same time, so emotional about how it was all turning out.

    In February, our Physio came to our home to meet E and to begin working with her. She was so patient, knowledgeable, and kind. Truthfully, I realized that I felt more natural and in my element speaking with someone on a therapy team than I do with most other people. She not only identified all of my concerns within that first session, she also explained the impact each one had on further development and what could be done to address it right away. I’ve worked with a lot of different therapists, but I was absolutely blown away by her! She was sensitive and calm, appreciated the fact that this was our third child accessing services, and spoke to me in a manner that made me feel like an equal. I felt so comfortable and confident in her presence and that we had found the perfect person to support us and help E reach her milestones!

    So, why decide to share now, when initially I was so adamant that we just keep this to ourselves? Because when you don’t share the hard parts, sharing the good isn’t as epic. I could have easily posted these photos of E and left it that that, but she deserves so much more recognition for all of her hard work and persistence. We only had three sessions before quarantine hit and in-home therapy was put on pause. With worksheets and tips, phone calls with directions and advice, E has thrived and is now confidently pulling herself up to stand and beginning to cruise! On my birthday, she independently grabbed hold of the walker we had left out (more for her to play with the front panel than feel any pressure to walk with). She took a few tentative steps with it and I was absolutely blown away. We had gone from sessions and exercises where she wobbled, and was agitated, and needed core support to remain upright, to her trying to take a couple of steps with her walker! E kept pushing through, she’s stubborn and dedicated and persistent and inspiring and has made huge strides (pardon the pun) throughout this quarantine. She’s doing all she can to keep up with her brothers and having them home 24/7 now constantly motivates her to get up and join in whatever they’re doing! We’re still working on getting her to stand independently, reducing scooting, and cruising with more ease, but she has come so far already and we couldn’t be prouder!

    I was emotional when it was confirmed that she would indeed need physio, regardless of the fact that I’m the one who pushed for it in the first place. What I hadn’t focused on at the time, was the unique sense of pride and accomplishment, and the thrill that comes from successful sessions. We’ve been given more opportunities to celebrate what others come by so effortlessly. Was I excited when I saw the boys pull to stand for the first time? Of course! But there was an element of relief added to the excitement that changed the experience with E. The same can be said for each of the kids and their milestones, respectively. What’s been especially memorable for one has been different for another and it has left us with an appreciation for every single moment, big and small. I’m constantly blown away by challenges and obstacles that Y, N, and E not only face, but work so hard to overcome on a daily basis. I’m so proud of them and forever grateful to so many therapists who have essentially become extended family over the years!

    E is thriving and getting stronger, step by step, every day. This is a chapter that brings with it memories of us watching her excitedly and in awe, with her brothers clapping or cheering her on, as she goes above and beyond goals, doing so with so much joy and inspiring us every step of the way!

  • Autism Awareness Month 2020

    Autism Awareness Month 2020

    Originally published on http://www.itsybitsybalebusta.com
    04/2020

    When online learning started in March, I shared on Instagram how I was having a hard time finding a reflection of our reality as I scrolled through my feed. Seven weeks later, it’s almost weird to feel like this is our norm. Mornings spent getting through showers, laying out uniforms, making lunches, updating communication books and filling up backpacks have been exchanged for a much slower pace. We’ve settled into our new routine which includes zoom sessions and tele-therapy. While N is able to (for the most part) sit and participate in virtual circle time and lessons with his class multiple times per day, the photo above is what online learning looks like for Y.

    For the past three years, he has received intensive therapy through the autism program offered in his school. When the school closures were announced, my fears of regression grew exponentially. Without the necessary consistency required of his program, consistency we had done everything to maintain for the last 3+ years, I couldn’t see how regression would be avoidable. While the last five years of this journey has thrown multiple learning curves my way, learning how to advocate through a pandemic has definitely been one of the most interesting. M & I are very involved in Y’s programming and with all aspects of his therapy. With the school closures, we didn’t just have to adapt to the pandemic version of homeschooling, supporting our three children under six through a chaotic and confusing time, working from home and navigating our way through Pesach, basic errands, groceries and more, we also suddenly became stand-in therapists. Together we developed our own “Get Y Ready For Pesach” program! We used techniques and strategies we had learned over the years and began to fade out chametz and prepare for a three-day yuntif (where routines would be further changed out of their norm than they already had been). I’m so proud to say our preparation and “program” was successful! Y’s resiliency and ability to adapt is astounding. 

    Now that school is back in session so to speak, the above photo is what e-learning looks like in our home. It just so happens that Autism Awareness Month fell during quarantine. While the phrase, “If you’ve met one person with autism, you’ve met one person with autism,” stands true, I feel like it’s important to share what learning right now may look like for families like ours.

    Basically from birth, Y has always responded to music. Although he was colicky, over time, certain songs and sounds began to soothe him. Over this past summer, Y’s ability to communicate really began to pick up. We would frequently hear back from his team about how attentive he was during his group music sessions as well as how he’d participate and was more willing to put into practice different strategies he was learning in other areas specifically during this therapy. M & I spoke about it and although we were concerned with how full his schedule already was, we decided to go ahead and add music therapy. I was very clear that I didn’t want this to be work for him. I didn’t want him to have a ton of expectations and I didn’t want the other therapies to overtly partner here, as they did in other areas. I wanted this to be a space where he could enjoy music and where it could soothe him and help him continue to put into practice everything he had been learning naturally and, for the most part, independently (or at least more so than we had seen in other forms of therapy). I wanted him to know that we had “heard” him, so to speak, and understood that music had an impact on him and that we wanted to embrace and encourage it!

    I could not have anticipated the results we’ve seen. I’ve learned (and frequently been told) to remain realistic. It’s not a phrase I like, but it is something I’ve come to at least partially understand. I truly believe Y is capable of everything and anything and will always advocate as

    such. When it came to music therapy I had two motives – I wanted him to be happy and feel heard. N can tell us that he likes certain activities and expresses his hobbies and interests clearly. I strongly felt that Y was attempting to do the same through his engagement with music and I wanted him to know we recognized that. Months later, not only does he absolutely love these sessions, but the following three words speak for themselves – he is thriving.

    Quarantine has been HARD, don’t get me wrong. When you go from 36 hours of professional intensive therapy a week to almost nothing for 5+ weeks, it’s definitely a shock and challenge. Behaviours that had been addressed begin to emerge again and the fear of regression hangs overhead like an ominous cloud. Given all that, without quarantine I would never have attended or participated in a music therapy session the way I’ve been able to these past few weeks. It may seem an odd thing to be grateful for, but I am nonetheless. 

    We are beyond blessed to have an incredible therapist working with Y. Her patience, sensitivity, encouragement, warmth, and undeniable skill are extraordinary. Our family has known and loved her for years, but working with her directly through these sessions (and through a pandemic) has only further solidified how in awe we are of her. She has not only supported Y these past few weeks, she has provided me with endless amounts of hope, encouragement and kindness. I have cried during more than one session. I have been completely amazed at how motivating music is for my son. How through it he attempts to form words, how he is able to follow instructions, understand expectations, and participate appropriately and meaningfully. How he doesn’t want it to end and will work even harder those last few minutes to extend the session, even attempting to verbalize “more”. How he gets past the difficulty of working virtually and will connect with his music therapist through a screen. How he listens to her and will look right at her on that screen. How he has the freedom to make choices and guide the session through selection of instrument or song. I have watched my son flourish and thrive during these sessions. 

    I would be lying if I said it was without challenges. There are moments that are more difficult than others, but on the whole, it’s an undeniably positive experience for him and one which has effects that filter into so many other areas. Because of these sessions I know he understands his visuals, he knows that he is able to make choices and be heard through using them and he puts into practice taking turns, following instructions, understanding expectations and so much more!

    Having Autism Awareness Month fall during quarantine this year highlighted so much for me personally. Regardless of the fact that we’ve been helping our son navigate this journey for the last 5 years, being able to see his resilience has been inspiring and has taught me so much. Being able to attend his virtual therapy sessions has been so eye opening, both in terms of how hard he works and how much prouder I am of him and every single one of his results, seeing the effort and determination first hand. Usually I feel like this month is reserved for sharing awareness with friends, family and across social media, but given the circumstances this year, I’m the one who, over the past month, has gained the most awareness in so many ways – ways that I hope will better shape the way I not only relate to my son but also to his therapy going forward! It’s one thing to be on top of the therapy and communicate with the team, attend meetings, request and view data, adjust programming here and there or attend parent training or host in-home sessions. It’s something else altogether to help carry out a session, to witness his resilience, determination, and ability to adapt and work through regardless of the chaos and upheaval to his routine, schedule and structure. Each day I say I couldn’t be more proud, but that’s quickly disproved the next day as my pride only continues to grow! Virtual learning is by no means easy for our family, but we’re adapting where we can, advocating for alternatives where we can’t, and learning more about each other and our strengths than ever before. And while it’s not the Autism Awareness post I was planning to write this year, it couldn’t be more fitting. Potential, capability and resiliency through determination are three concepts that should be synonymous with our son’s diagnosis and, if nothing else, I hope that is what you’re able to take from this post and what I’ve shared today!