Navigating Special Education During COVID

img_4213

This photo has nothing to do with this post, but might be a glimpse of what our Fall will look like!

There have been certain points in our experience with Solly where I sit down in tears on my couch and scream, “It shouldn’t have to be this hard!” Usually this is a statement reserved for fights with insurance companies for refusing to cover durable medical equipment or procedures, disagreements with doctors who want to stick a label on him and tell me what he can’t or won’t be able to do, or conversations with random, ignorant strangers who feel my son should be placed in an institution (for the record, this last type of conversation happens very infrequently – most conversations with strangers are kind and often uplifting – but when they do happen, man, it stings.)

Lately, I’ve been fretting and losing sleep over another topic: school.

Life is difficult for everyone these days. There’s so much uncertainty in the air, conflicting messages about how to stay safe and what you should or shouldn’t do during a global pandemic, and on top of everything else, kids are heading back to school. Continue reading

Getting Started with Medical Cannabis

This is one of those posts that took me approximately one million years to write. It’s a post about starting Solly on medical cannabis, a subject that I’m still on the cusp of beginning to understand even though I’ve researched it for years. Before I begin the post, it’s important for me to note that, despite the stigma around marijuana, cannabis is a powerful medicine for many ailments, especially some of the challenges associated with pediatric stroke and cerebral palsy. Because each compound produced by the plant, or cannabinoid, can be used medically and in conjunction with other cannabinoids, and treatment for each person can vary widely, I highly recommend teaming with a doctor who understands how each cannabinoid can be used within a specific population. This is our story of how we’re getting started with medical cannabis under the guidance of a well-respected, very experienced doctor.  

If you follow me on Instagram or Facebook, chances are you’ve seen a few recent posts about Solly’s rapidly emerging expressive speech. After struggling to communicate with him for 5 years, I can’t even begin to put into words the impact this development has on our lives and how beyond excited we are that we’re starting to better understand Solly’s wants and needs.

Here’s one of the videos I shared earlier this year:

Most of Solly’s bilateral brain damage is in the left hemisphere where, in a typical brain, much of the speech center is located. There is quite a bit of research that indicates that if one side of the brain is impacted by stroke in childhood, the other side of the brain will rewire to take over these capabilities (here’s one publication with more details), but because Solly’s brain damage is extensive and widespread on both sides of the brain, we weren’t sure that would ever be the case.

As we’ve tried alternative therapies and procedures over the years – mainly hyperbaric oxygen therapy and stem cell therapy – in combination with traditional speech therapy, we’ve seen big gains in cognition and receptive speech and some small gains in expressive speech. While we’ve always been adamant that Solly’s cognition is right on track, his expressive speech has lagged significantly and everything we’ve done in the past has helped him in little spurts, but no huge gains. That is, not until lately. Continue reading

Living Life in Limbo: How We’re Doing in the Time of COVID-19

One of the biggest lessons Solly has taught me is that you can’t control everything. Keeping that in mind, it’s pretty ironic that he was born to a type-A, control freak – a.k.a. me.  It took me some time to learn how to go with the flow, but five years into our parenting journey, there’s not a whole lot that ruffles my feathers anymore. That being said, when the future is in limbo, I sometimes still struggle to remain calm and unworried.

img_2577

Snuggles at home

After we moved to California, everything was very much uncertain. Other than immediately getting Solly on the waitlist for weekly therapies, I didn’t worry about anything else: I figured things would eventually fall into place. And they did – we got a coveted weekly spot at NAPA Center for Physical, Occupational, and Speech therapies, I found a very sweet and super responsive pediatrician who Solly and I love, and we were able to make a dent in setting up our medical team, having one appointment with a neurodevelopmental optometrist and scheduled appointments with a well-respected pediatric neurologist and orthopedic surgeon. We even made contact with the school district to kick-start the IEP (Individualized Educational Plan) assessment process so Solly would be set up to start kindergarten in the Fall with all appropriate supports in place.

Then the COVID-19 pandemic hit. And, while we are all healthy and safe at home, a life in limbo became our unforeseeable future.

Here’s how we’re doing in all aspects of Solly’s life: Continue reading

We Joined The Trexo Walking Club

img_1563I once read that in order to create new neural pathways, a movement pattern must be repeated hundreds, if not thousands, of times. In practice, this proves to be true: we spent months and months helping Solly roll over and army crawl before he was able to do it on his own and we find that as we work towards more complex milestones, more and more work is needed. Putting in this amount of effort for every single inch- and milestone sounds nice and do-able in theory, but in reality, there is not enough time in the day for this much therapy.

I often find myself up in the middle of the night, researching techniques, procedures, medications, and more to help Solly recover to his full potential, which is how I found out about stem cells, SPML, hyperbaric oxygen therapy, and all the alternative therapies we’ve tried. It was during one such research session in the wee hours of the morning in the Fall of 2018 that I came across Trexo Robotics on Instagram.

Continue reading

Making Teletherapy a Success

Originally posted on NAPA Center’s Blog

With the ever-growing stay-at-home orders and quarantines related to COVID-19, life is weird right now. Our schedules are in limbo, our children’s lives have moved online, and as parents of special needs kiddos who already take on so much in a typical day, we’re now acting as our child’s teacher, nurse, therapist, and more, all on top of being Mom or Dad and everything else we usually do on a daily basis. We already had too much on our plates without a global pandemic: to say we’re stressed out doesn’t even begin to describe how chaotic our lives feel now.   img_2717

Fortunately, therapy help is available by way of teletherapy or telecoaching. I know what you’re going to say, “But I still have to do the hands-on work during these sessions. I’m still acting as my child’s therapist.”

Yes, that’s true. With teletherapy, you will be an active participant in your child’s session. But, that’s just one part of it. There’s so much you can gain from teletherapy that you may not have considered. Simply stated, teletherapy can make life a little bit easier when everything else seems really difficult.  Continue reading