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| Mr. Sophisticated Luki at LegoLand |
It's been a few years since I made a
list of products we use for Lucas. He has grown quite a bit since then and some things we've chucked, others we kept and new items have been added to our list. Gabriel said when he had a Mercedes it was a much cherished high performing luxury car but it was also high maintenance and sat in the shop a lot. Lucas is my Mercedes! I have to fine tune stuff for him every so often.
So here is my list:
1.
chewy necklace : He likes these
basketball ones the best.. The only problem with these is that we go through them so fast as his bite is pretty strong. The necklace comes off the basketball. I wish they would put a small metal ring around the hole so that it lasts longer. I wrote to the company to do so but they said they won't because it is a choking hazard
Lucas still likes to chew on his finger when he gets frustrated and it can get quite red and swollen. We have a finger guard for when his chewing is severe and we always keep a chew necklace. When the chewing gets really severe, I have to place a
finger guard to stop the swelling and give his poor finger a break.
2.
tomato glasses frames
Love, love love these glasses on him. Fits so well and he looks so handsome.
3.
seat liner
A must now for when dining out. He has outgrown the Chinese car seat covers. Found out about these through our MediCal representative and they even paid for it.
4. High tops
He is getting better with keeping his shoes on most of the time and I can send him in sandals during the summer. The school hasn't complained about him taking them off , knock on wood. When we go to indoor kid's play gyms which require socks, he will take them off so I tape the socks with sports tape.
5.
AngelSense /
Jiobit
Although the schools do a great job of keeping him safe and I trust the bus drivers, I keep a tracking device on him whenever he is away from home. I used to subscribe to AngelSense but it was getting very costly so we switched to Jiobit whose subscription price is only $8.99 per month verses $30.00 for Angelsense. The difference between the two beside the pricing is that Jiobit doesn't have the feature where we can listen in or speak to Lucas in emergency situations. That's ok because Lucas isn't able to take directions anyway. Also, the battery life on the Jiobit lasts longer - a week versus one day.
6. Recorder
spy recorder
I do use it once in a while when I am feeling extra anxious about his care and safety at school . What with so many stories of abuse of special needs children by school staff, I need this to preserve my sanity. - whatever is left of it. So far, I've found everyone to be very gentle and caring with him.
7.
Safegard car seat. We don’t have a need to use this yet because the Britax Highpoint is doing a great job but will consider it when he outgrows his booster seat. He has been so mellow in the car that we may only need the car safety belt. This will only work in the minivan or in the front seat. One day, when Luki is big enough, he may be able to sit up front and I know he will love that! When the time comes, I will use the safeguard harness for the shotgun seat. This is also what is used for him on the school bus.
8.
Britax Highpoint. We have one in each car. I love the strap between the legs because without it, he will squirm down and wiggle his way out of the seat.
9. C
onvaid cruiser/
MacLaren Stroller. We only use the MacLaren right now because it is so much lighter and portable than the Convaid. As he outgrows the MacLaren, we may need to use the Convaid unless I can find a lightweight wheelchair. I saw a cheap
wheelchair on Walmart’s website.
10. Tandem stroller
Graco Sit Stand : This was very useful when Liam was an infant but now Liam refuses to sit in the front and would rather stand with Lucas in the back so we no longer use this stroller and have moved on to the Lascal Buggyboard attachment on our MacLaren special needs stroller. We first used it when we went on a family trip to Sequoia National Park and Liam loved standing/sitting on the back and the freedom to get off and walk to explore when he wanted. Lucas loved the security of sitting down looking cool with his legs crossed like an adult (see picture above).
Luki will walk next to me at grocery stores. I usually hold his hand when we go for walks in the neighborhood but at places like the grocery store, I have him attached to me with
Blisstime Anti Lost Wrist Link Safety Wrist Link . I can have it attached to the shopping cart when my hands are too busy getting groceries in the cart. He is pretty good about standing near the cart but on occasion, will walk away towards what fancies him in the store. This wrist link reminds him to not wander away.
11.
Lascal buggyboard Maxi with seat. Lucas sits and Liam (2 years old) sits or stands in the back.
12. Foot rest for car seat
knee guard foot rest : Lasted for a while but was destroyed when Lucas tried doing all kinds of acrobatics on it.
13.
EZ mat Still comes in handy during mealtimes. I am learning to stop spoon feeding him and let him eat on his own even with a big mess. He still can’t independently use a spoon but will use his fingers to eat anything. He is getting better at pacing himself, too.
14.
seizure helmet. We are one year seizure free!!!! He has not worn his helmet for 12 months now. Praise God! Thank you, Jesus! Hail,Mary! Hallelujah! Amen!!!
15 Banzel and Lamotrigene: Our wonder drug combo for seizure control.
16. multivitamin: we just get a supply of gummy kids vitamin at Costco. We are also still giving him high doses of
this brand of DHA. We put CBD oil on hold for now.
17 Hydroxyapettite toothpaste from Japan
Apagard Toothpaste: Lucas does not spit toothpaste foam out and would rather just swallow it. I use the bubble- gum tasting toothpaste, maybe I should switch to something that tastes more like Listerine so that he spits it out. But, then again, he may not allow me to brush his teeth. He loves getting his teeth brushed (thank God, again!) and also loves to watch other people brush their teeth, too. Not sure what the fascination is about but I always have an audience when I brush my teeth. I may need to use it as a positive reinforcement reward during ABA! “Lucas, if you put the puzzle in, I will let you watch me brush my teeth!” I never dreamed I would have a captive audience when I brush my teeth!.
18 ABA : Therapy at home 4 days a weeks. Not sure how much it is helping but I love that he gets more people interaction and attention even if it is just from his therapist. More on ABA progress on another blog entry.
19
Go Talk 4; We have not had much success using this communication device. I don't know if we ever will have much luck. I'm still hoping one day he will just start talking.
20
Nikki's xtra large cloth diapers At home, I try to use cloth diapers just because I want him to have some relief from itchy plastic diapers.
21.
Swifty snap I use this to change Luki's diaper when I am at public places. It allows me to change diapers with him standing up. We also use it at home because Luki will not lay on his back for diaper changes. I have to change him with him on his tummy. We try to "potty train" him by telling him it's bathroom time and have him stand in the bathroom with me sitting on a stool. When I don't have the swifty snap, I lean him against a wall to keep the diaper in place.
22. U
mbrella cap When I first saw this product on social media, I thought it was a gag gift but it has worked amazingly well with Lucas on rainy days. He doesn’t know how to hold an umbrella and even if he did, he wouldn’t use it because he loves falling water from the faucet, sprinklers , anywhere. Raincoats for some reason leaves him soaking wet. This umbrella cap works so well. It looks funny and I have had random people in cars take picture of him. But who cares what they think. Hopefully, his picture isn't posted on social media and it goes viral.
23. DVD player/iPad with YouTube videos (Baby Genius is a favorite)/
ipad holder for the car: I found a cheap one for $4.00 at Daiso.
24. Protein shakes
Orgain is the brand we use because he eats well but is still so skinny that I worry he is not absorbing the nutrients from food (hypotonic muscles in the GI system too weak to facilitate peristaltic movement of food ?)
25. Adaptive clothing line at
Target and
Kohls. Lucas does not mind labels on clothes but I like the pants these adaptive clothing lines offer. They are roomier in the crotch area for kids still in diapers.
26: This
bead toy is his absolute favorite. He likes to flick the beads with his finger and carries it everywhere he goes. He also still loves
Scout.
27.
Sensory Scout Swing: I bought this as a Christmas present for Luki last year. It is said to be good for proprioception and kids on the spectrum like swinging but Luki never took much liking to it. He is, however, able to swing on his own on a regular swing at the park if we don't push too high. My two year old has stamped this as his own and loves swinging on it.
