Aunty Mommy is back

 I'm baaaaack! 💅

And I am exhausted, but for the best reason: the launch of Little Bee Gallery was such a huge success, we're running low on our original inventory, and a bit run off our feet! 

For those who missed the news, myself and my aunt Suzanne have formed a non-profit art gallery, with all net proceeds going directly to Beckett's special care costs (more on that below). We launched with a lot of pomp and circumstances, as any new business wants to do, and an online auction on select pieces - but don't worry, we're still open for business! 

Our online gallery features originals and limited edition prints of artwork by myself and Suzanne, and special featured pieces donated by our Friends of Little Bee artists. 

We will continue to add to the artwork available, so please help us continue to keep the ball rolling. If you or someone you know is in the market for a piece of art, I would love it if your first stop was our site. And if you're not in the market, totally cool, but we'd appreciate a follow on Instagram so we can become more of a thing and get more buyers to support our wonderful Little Bee. 

In addition to the new tech skills Suzanne and I have gained through this whole project, we've also learned that it's not widely understood how expensive having a child with special needs, like our Becks, can be. So, I wanted to shed some light on some of the costs that his family incurs making sure he gets the very best chance at being his most independent self. I'm thrilled that Little Bee Gallery is able to help with some of these costs.

Costs

Physio and other therapies

Chantale has talked about Little Bee in physio in a previous post. Physical, occupational, and speech language therapy are all so important for Beckett to learn new skills, particularly at this young age where he can benefit so much from neuroplasticity.  Research has shown just how important that early intervention is, and how much frequency matters too. While the public health system offers some of these therapies, what they offer is dependent on medical complexity, and for Beckett they are only able to provide it very infrequently and often not even in person. And funding through other public programs takes months and months to even be reviewed, let alone funded. The infrequent options offered by AHS, and waiting for funding to come through is not good enough for Beckett to reach his full potential. 

Beckett goes to physio every week. Each weekly session costs $168. As you can appreciate, private health care is quickly depleted at that rate. 

Beckett has also done two "intensive" therapy sessions - during intensives, Becks does two or more sessions each day for a week or more, often one occupational therapy session and one physical therapy session. The costs for a one week intensive starts at $1,400 and goes up from there depending on what he's booked for and the length of the visits. Becks is booked for a two-week intensive at the end of this month, which will cost about $3,400. He has four more two-week intensives booked for 2025. Is it expensive? Yes. Is it worth it? Also, yes. But I'm so happy to that Becks and his family has support - he is lucky in that way. 

So far, purchases from Little Bee Gallery have raised enough to cover all of Beckett's intensives for 2025. 

Child Care

Beckett can't yet sit independently and he doesn't crawl yet.  He's working on that in weekly physio! While Chantale and Keith wanted Beckett to go to daycare when Chantale returned to work, it wasn't feasible: without a full time aide to attend to his special needs, many day cares won't accept Beckett. And even if they did accept him, without an aide (which they don't yet have funding for), Beckett would not be able to play or engage with the other kids in any meaningful way due to his mobility limitations.

As a result, Chantale and Keith decided it would be best for Beckett to hire a nanny until such time as Beckett becomes more independent. His nanny is great, and ensures he is constantly challenged, engaged, and working on what they learn in physio.

Specialized Equipment

Beckett has a lovely new Benik compression vest which is helping with his body awareness. That costs about $370. And of course he'll outgrow it cause he's just a wee babe still, so he may well need more custom vests in the future. 

Soon they will be buying a specialised bath seat for Beckett - since he can't sit independently, bath time has gotten a bit precarious with an excited, slippery baby. A safe seat that will work for Beckett's needs costs anywhere from $350 a $1500 depending on the brand. Luckily there is a provincial program (Alberta Aids for Daily Living), that covers 75% of equipment costs, and limits the out of pocket expense to $500/year. 

Beckett has a special standing frame, which he uses to strengthen his hip joints and work on standing muscles generally. They have fortunately been able to rent that for free through a local CP charity. But as he grows, they may not always be able to find that type of equipment to rent. He will soon benefit from having a gait trainer/walker (he's keen to walk!), which they will luckily also fall under AADL, but will result in long term expenses for modifications and maintenance of the equipment as Beckett grows.

New HOUSE

This is also in an older post, but they decided that their 3 story town house would not work well for Beckett long term, and decided the right decision for Beckett was to move to a bungalow so Beckett will have everything he needs on one floor. 

Smaller items 

Not a huge thing, but they have to pay for parking every time Beckett has to visit one of his specialists at the hospital. Surely, there should be a system where parents are reimbursed for that? Nope. 

There are so many additional small things that they've had to purchase to help Beckett learn new skills. Like cups. Becks has struggled learning to drink from a sippy cup or straw, and he can't drink on his own from an open cup because of his muscle spasticity and difficulty with fine and gross motor skills. They've tried so many different special cups to find ones that work for Beckett.

He has a vibration table, which is a complimentary tool to physiotherapy and helps with muscle awareness. He has special vibrating utensil things which work similarly and helps improve mouth closure. He has a tens machine which they use every day as another complementary tool for physio.

Future possible costs

Maybe he'll need a wheelchair down the road. Maybe crutches. Maybe custom orthotic braces. We just don't know yet. They will likely need to make adaptations to their home to make it more accessible for Beckett as he gets older, by adding ramps, and perhaps replacing the bathtub with a barrier free option. And his therapy costs will continue for the foreseeable future. 

What you can do

I think the most impactful thing any one of us can do is write to your government representatives and advocate for access to better funding. The Alberta government recently announced staff cuts to the case workers at FSCD. Wait lists to get assigned a case worker to assess what level of funding families qualify for is already months and months long. It's up to all of us to tell our elected officials what matters to us. So, write! Do research! Advocate! 

Having said all of that, it's not all bad news. Accessing the federal disability tax credit is reasonably barrier free. And Beckett continues to be able to access his feeding team specialists, including SLP therapists, free of cost through AHS.

If you are here reading this, that means you know, or at least know of, a child with a disability. Chances are you know more than just Beckett. Providing support in whatever way you can, whether it’s just going out for coffee to talk and decompress, or writing a letter to your elected officials, it all makes a difference!