If you have a medically complex little one, you know how quickly all the STUFF adds up. Besides regular baby stuff, I’m talking about all the physio and occupational therapy gear that ends up being needed. From special seating to oral eating aids, leg immobilizers, places to buy the best syringes… it ends up being a LOT (and a lot of $$$).
I get asked a lot about the stuff we have for the boys and where I got it from. I do 99% of my shopping online since leaving the house is tough, so most of these things can be bought online (at least in Canada/US).
Now, standard disclaimer here. I’m not a medical pro. These are items that were either recommended to us for our boys from a physiotherapist, OT or doctor for our specific issues, including cerebral palsy, vision impairment and feeding difficulties. These may not be the right items for your kid so always ask your PT, OT or doc before using something blah blah blah.
Onto the good stuff…
These velcro-wrapped tube thingies hold the arms or legs in place so that certain physiotherapy moves can be done safely and effectively (until the boys get strong enough to not need them). I could not find these in Canada so I ordered them to the United States from Medi-Kid and had them shipped up here from a cross-border shopping place (MyUS).
This floor and booster seat may look like the popular Bumbo, but it’s much more than that. It is physiotherapist designed to put baby in the correct spine and hip postures to encourage good sitting form and prevent hip dysplasia (which CP kids are at risk for). It’s a little pricy but after using it for only a few days, it’s so worth it! Comes with a tray for feeding and playing too.
Baby carriers are great for many reasons but one is cementing that head and neck control by facing out (forward)! I have taken the boys on walks with Perry (our dog) facing out and they love it. Axel looks at everything and it’s such a good opportunity to talk to him and list out the names and colours of things. Jaxon, we don’t know what he sees, but he still enjoys looking around and being snuggled and talked to.
I have a Beco Gemini carrier and LOVE it. Super comfy (cross those back straps in an X!) and easy to use.
This little plastic tool looks simple but it helps little ones learn to chew and move food around. I add some puree (or ice cream) in the end of it and give it to Jaxon to chew and get the food out. It helps train those oral muscles. It’s also just a good teether by itself too! I found it on Amazon.
These are the most expensive baby spoons you’ll ever buy BUT they work like a hot damn! Case in point, Axel, the oral aversion baby who successfully feeds himself with these (although it’s messy haha). Worth every penny! They’re available everywhere (any baby store), but I got them on Amazon.
— Z Vibe
Another oral motor exerciser, this was recommended by our OT. There are specific mouth exercises you do with this one that an OT should show you how to do for your child, but it basically helps stimulate the muscles around the face/mouth and teaches your child how to use those muscles to swallow food better. It’s a great tool!
We use this for arm exercises and weight-bearing! Holding A or J up on their arms on the ball as a way of practicing weight-bearing and building shoulder and arm strength, which both severely lack right now. It will help them push up off the ground later on, especially Jaxon who does not do that right now at all.
Obviously you can buy one of these anywhere (I think Walmart is the cheapest) but I chose to get it on Amazon because I don’t get out much!
This isn’t totally necessary as our OT mentioned using a yoga mat with a towel wrapped around it is basically the same thing, but it was only $18 so I figured why not. This is another way we do arm exercises, tummy time over the roller! I also got this on Amazon.
Now THIS is cool! I found this one myself. It is a special bottle (well, the top part – it will fit any standard size bottle) that was originally designed for children with cleft palates who could not suck on a traditional bottle. This one requires just a bit of pressure or effort, even biting down, instead of requiring actual suction (which the boys cannot do). It is so amazing. Both Axel and Jaxon love this to get some milk orally and can use it no problem!
It doesn’t replace a whole feeding as the milk comes out pretty slow so it would take a LONG time to get a full 150-180ml down, but we use it just for oral eating practice and will do about 30ml in 10-15 minutes. You can watch this video to see how it works.
These are super cool. There is a specific brushing technique to be used with these, so definitely ask an OT to guide you on that. (Look up the Wilbarger Brushing Protocol.) We learned it during our Toronto trip and I immediately ordered a pack of these off Amazon for about $25 CAD. They really help Axel in particular to calm down and be more settled, with the sensory input. Jaxon finds it relaxing (as he likes all massages lol) and it also increases awareness of all parts of the body (helpful in brain injury).
Vision Therapy Tools (for CVI)
Jaxon has CVI, or Cerebral Visual Impairment (also called Cortical Visual Impairment or Cortical Blindness). It is a severe vision impairment that is due to brain damage (his eyes are fine, but his brain cannot understand what he is seeing).
There is some hope for CVI patients to recover some of their vision by teaching their brains what they’re seeing. We have yet to receive any vision therapy at home (another byproduct of our broken system that doesn’t care about kids like Jaxon!), but these are some tips I have read about in a book called Little Bear Sees, as well as been told by other parents and a vision therapist we saw briefly in Toronto.
— Sparkly Ribbons
Anything that catches light and movement works well for CVI kiddos! They will glance at the light/movement and hopefully over time learn to track a moving object this way. Jaxon loves silver and gold ribbon/bows tied together in a bunch. Our vision therapist in Toronto made this for him and it works so well!
— Solid Colour Toys
Multicolour toys are often too complex for CVI kids to understand. They see each colour as a separate entity, not understanding they are pieces of the same object. So at first it is best to stick to solid, bright-coloured objects, usually in a primary colour (red or yellow are supposed to be the top picks). We got Jaxon a red Elmo stuffy to take everywhere with him and he definitely can see it!
— Light Up Toys
Lights are a great way to attract visual attention. There are sooo many light up toys out there but a few of Jaxon’s favourites are anything BeatBo (seriously I hear these songs in my sleep), this light up flashlight toy, and this light up piano (that also plays classical music in case your baby is as refined as mine).
— Black Poster Board
Another obstacle for CVI kids to overcome is visual confusion, which means a cluttered or complicated background. If you hold a toy up, they may be so confused by what’s in the background to be able to focus on it (think of other toys in the background, a printed play mat instead of solid colour, a patterned rug, furniture, etc). So it’s best to show your child that toy against as simple a background as possible – ideally a black one. A sheet of black poster board from the dollar store works well as a play mat surface or propped up to create a dark backdrop.
I hope you found these items and links useful. I know when I was first searching for these things to buy, it took me a LOT of time (especially being Canadian) so I wanted to put together this guide to make it a little easier out there. Consider this your special needs parent starter pack. 🙂