I said I’d be back to continue the updates on my little Squish and her delays, and then, well, life got in the way! But here I am, AGAIN, with more updates. (Check out the rest of this series here, here, and here.) If you find any of these posts helpful, as always PLEASE leave a comment. It helps me and other readers so much! If you have more questions or want to talk closer, don’t hesitate to contact me.
Last I left off, Olivia was 11 months old and in 4 regular therapies: Physical Therapy (45 mins weekly), Occupational Therapy (45 minutes weekly), Speech Therapy (30 mins every other week) alternating with Feeding Therapy (30 mins every other week). Busy? Who, me?! Understatement of the year, but I digress. Since then she’s been busy meeting milestone and inchstone one after the other, like an actual hero. Read on for long and long overdue update.
On her 1st birthday in March 2021, she was finally rolling over without assistance, but the big milestone that had us all cheering was that she got into/out of a seated position all on her own. We were able to lower her crib for the first time since she was born!
We continued with this therapy routine throughout the spring and summer, but when she was 18 months old in September 2021and still not walking or cruising with a standing toy, I wondered if this was something we were going to be in more long term. Up to this point I had assumed that Olivia (affectionately, “Squish”) would just need PT for a few months until she “caught up” and then we’d be done. My mama instinct was kicking in and I started to consider Early Intervention (CDSA).
Previously whenever I thought about it, I ruled it out because with covid protocols in place through 2020-2021 everything would be telehealth, and to be quite honest I just wasn’t sure how a virtual 2-hour assessment was going to go. By the time I looked into it, though, they’d had 18 months of experience with that under their belts so I decided it was worth a shot. Ultimately I came to the conclusion that if they were going to tell us that she didn’t qualify for services, we were no worse off. But if she did qualify for services, having a coordinator and the resources available to our family (evaluation at no charge!) was a huge win. And we would have the ability to opt in or out of services any time.
Her evaluation team was amazing, the virtual experience was pleasant and Olivia actually enjoyed seeing people on the screen (when seeing them in person would have upset her. Among other things, one of Olivia’s struggles was sensory sensitivity, and being with new people made her very uncomfortable). At her age, much of the questions and answers from the evaluation team were things I answered. There was about 75 minutes of questions, followed by a 20-minute break (which was great because I was able to lay her down for her nap at that time), and then a review session where they told us all of her scores and ultimately informed us of her eligibility for the program. YAY!
…Now what?! Honestly, at that point not much changed. All of the therapists we’d been seeing up to that point were already participating in the program, so that was great because we didn’t have to change unless we wanted to. Early Intervention programs prefer to get as close to the child’s natural environment as possible, so once we were assigned a coordinator, we were able to have her send a request for in-home therapy. At that time, none of the folks we were seeing were actually doing in-home visits yet, so we stayed with what we had in the clinics, but it was nice to know that could have been an option for us.
Right before Christmas last year, Olivia took her first independent steps without holding on to anything! Up to that point she was so averse to touching and holding hands and even pushing a cart that she ONLY walked in the clinic with her PT (and ONLY to get away from him, ALWAYS crying the entire time…to say it was a stressful 45 minute weekly endeavor is an understatement). About a month later, however, her PT informed us on zero notice that she was being discharged and that I had “enough knowledge to intervene when necessary.” I felt instantly nervous instead of excited (aren’t we supposed to be glad when our children graduate from therapy?!), and wondered what I was going to do about the custom orthotics (SMO braces) that he’d prescribed for her back in the summer, among many other things. At 20 months, she still wasn’t climbing steps, climbing onto/off of furniture or toys, holding hands, or rolling anymore.
In a pit of despair (am I a little dramatic sometimes? Maybe just too much coffee?), I called our CDSA coordinator. Never have I been so glad to have her! She talked me down off the proverbial ledge and agreed that “just walking independently” was not the end goal for Olivia, and that we should have at the very least had a few sessions to talk about discharge and next steps. Ultimately, this PT helped Olivia make great progress, but he decided he no longer wanted her on his caseload (she did cry A LOT for him). Thankfully, we were able to find a new PT a few weeks later who did a full developmental evaluation and agreed she would still benefit from weekly sessions. And since then, Olivia has been SO HAPPY. Her new PT has a gentle demeanor and she hasn’t cried in any of her sessions all year! She’s making great progress at home, too, and watching her solve problems has been so fun.
Because she still wears her SMOs 16-18 hours per day (and is much more steady/confident walking in them vs barefoot), we needed to check and see how they were fitting her little feet because I started to notice some redness on the top of her foot that wasn’t going away, along with a blister on her heel. Her new PT sent us back to the same orthotist we used before, and she was able to get some adjustments made before being measured for a whole new pair! My middle Squirt came with us and helped me pick out a new pattern for the hardware: smiling daisies and a pink strap! Olivia still has tiny feet, so most if not all of her shoes fit over her new orthotics pretty well. She is so used to wearing them (and I think she knows she walks better in them!) that she didn’t even bat an eye when we put them on her to check the fit and make any minor adjustments.
Recently, we had her 6-month review with Early Intervention and I’m happy to report that Squish has met some of her outcomes, and we were able to add a few more. I love that I get to meet with her team to discuss what outcomes I want her to have separate from the goals each of her therapists have. Her CDSA coordinator is a wealth of knowledge and a tremendous resource, and whenever we have meetings (all virtual, yay for convenience and no commutes!) she makes really interesting observations and suggestions, which I so appreciate. Sometimes it can be hard to see the forest through the trees, as they say, and I love the outside perspective from someone so knowledgeable. I love that we have a liaison if we have any issues with any therapists or need to make a change to suit our family better, and I LOVE that all these things are paid for by the tax dollars we pay for living in our county (we do pay for the actual therapies because they are covered by insurance, but many families qualify for a sliding scale fee based on household income, and there’s even a monthly cap!)
Olivia was a busy girl all year. In July of 2022, she went from signing and babbling to full-on talking! She was discharged from speech and a week later was discharged from OT! She was knocking all her goals out of the park (insert some famous baseball player reference here, and pretend I am not just funny but also athletic!) In September 2022, we had her 30-month well check. We learned she failed her vision screen, which her pediatrician said could be a reason for some of the gross motor delays, and she was referred to an ophthalmologist for a refraction. She has astigmatism and myopia in both eyes, so she will likely need glasses. The doctor was on the fence about it this year so we are abiding his recommendation and will recheck her in 3-6 months.
As we head into 2023, Olivia is currently only in PT, and loving it. She’s made tremendous progress and I’m so thankful for her entire team. At the end of December she will be 33 months (they do use months, don’t hate!)—3 months before she turns 3. Since early intervention ages out after 3, she will have another assessment to determine if she still has any delays and/or their significance, and we’ll go from there. If she is eligible, she may qualify for a special preschool program, or we may just continue with private therapy as she catches up. Stay tuned!
Yay Olivia! & yay mama & family! Keep up the hard work and determination! <3
What a blessing it is that I came across your page! My sweet Oliver has Hypotonia and honestly, I’ve been so lost. After reading your posts, I learned so much and I was able to get him into PT and OT! I’m hopeful he’ll have progress like your little Olivia! So happy for you guys! <3