I wanted to make this reel because I realize how easy it is to forget the success or “wins” you’ve had when chasing a dream. It’s easy to fixate on the “more” or “bigger” things and forget entirely that…you’re already doing it! I dreamed of being a model and actress my entire life! Sure, I could be a lead in a feature film (and I think I will some day) but until then … I am still acting. I’m doing it Peter! Anyway…just want to remind everyone to be present and if you only ever get as far as the step you’re on, at least you were brave enough to get on the ladder in the first place, and that’s a win! 💛 So yah… keep going!!
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•#keepgoing #dream #dreambig #actress #model
We are not outraged enough! Our babies are being assaulted and murdered and I don’t hear the outrage. We all fear our children will be harmed, but not being able to ask is a whole level you never want to unlock. Are we not all hoping that the community cares, and looks out? I drive slow in a neighborhood even though my kid never plays outside. I have saved kids who were drowning at parties that were not mine, twice. I put out candy even though we don’t go trick or treating. I pay taxes that fund all sorts of programs we will never use, that build high school football stadiums we will never attend. Why are we isolating disabled children as the problem, and that they take too much? If you cannot find a way to start caring for my child maybe I should start looking out for yours less? Doesn’t feel good…does it?
Visuals and fun, visuals and fun! Working on personal hygiene a lot lately with Micah as he is now in full blown puberty! He loves the water, but something about taking soap to his skin while enjoying the water just doesn’t mesh… we got a visual schedule for him so he can feel more in charge, and found a really fun loofa that plays music ( @thelooboos ), and fluffy soap! Consistency has been really helpful too! Any hygiene hacks please comment below! 😂
This is one of my all time favorite videos of Micah. I can remember how badly he wanted to climb back up that slide, and I just knew he’d be able to. We don’t always have cheerleaders though, and have to find ways to keep encouraging ourselves… let this be your reminder that we all face challenges, and a little grit goes a long way. Keep going! Keep trying! I often ask myself “what would Micah do?” 💪💪💪
I came down from getting Micah’s outfit for school the other day, and he suddenly had a new slinky. The only evidence was my dog eating the empty box, and his robe on the floor next to the cabinet we keep them in. Obviously he got one for himself, but I couldn’t imagine it. I set up my phone and caught him in the act! It’s too cute to see him do something INDEPENDENTLY that I kept stocking the slinkies and we went through about ten in a weekend 😂 As soon as they kink he’s ready for a fresh one. I mean, even him opening it himself is a huge accomplishment (thanks to our hard working OTs). Keeping @original_slinky in business one counter climb at a time lol
The feeling you get from your kid doing, tolerating, let alone ENJOYING something for the first time ever is what carries you through! Micah sat for the entire Mario Bros. Movie today! I happened to notice a screening for closed captions and I assumed it would either be a less crowded selection, or at the very least with folks who would understand. We ended up being the only people in the theatre and he was able to move around, stand up and dance, and eat an entire large tub of popcorn completely carefree! If I had a dollar for every time Mike and I would tap each other to look at him in awe just laughing, eating his popcorn, sitting still…I’d have about $200. Thank you @regalmovies for having this option! 😂 Little wins my friends…little wins!
Happy birthday Jules! Somehow, it’s your third birthday without you. I know that you’re still here with us, and that Micah is connected to you in that way. I hear him talking to you at night, and I feel you all around when I need you most. I miss you doesn’t do it justice. The intensity in which you lived your life left a hole so great in your absence that the loss of you is forever realized. I’ll eat a few too many cookies, lift heavy weights, wear a brace on some random joint, and drink my moon water for you today. I love you. Happy 39th baby brother 🎂
Micah’s primary form of communication is physical. He moves toward what he wants, throws our hands at things, brings us keys to signal wanting to leave, throws his cup to say “biotch this is empty how did you not notice I drank the last sip please fill it up”. 😂 Okay but really….we have been working so hard on his talker. We are still in a prompting phase (I set it up to the page I know he needs, but he can distinguish between a few icons at a time). Having this independence is crucial for him to exist in a society that is not at all equipped for alternative communicators. I’m grateful every day for his continued lesson of slowing down, being present, and connecting to this distracted world with intention and openness. May we be this lesson for you, too. #autism #dualdiagnosis #downsyndrome #nonspeaking
I also wanted to share a triumph with you! We have to do yearly blood draws for Micah as he’s hypothyroid and requires medication. We do just about anything to draw them out as long as possible, but we were finally forced to do the labs. I began expressing my fear to a mom at a best buddies meet up. Turns out her husband works at Texas Children’s Hospital. She connected us and I was able to really walk through my fears from the past and what accommodations I thought may make this time go better. I was listened to and taken seriously. This is not always the case… I prayed to my brother on the day to comfort Micah, came up with a new less restrictive way to hold and console him ( I’ll share in a separate video) and it was the smoothest and most successful experience we have had. I implore you to advocate for your child’s medical needs. Speaking up is hard for me, but I’m getting a lot better at it! Our kids deserve a quality of care that meets them where they are at. It’s not right how kids with disabilities are understudied, and it’s my hope that more medical professionals seek a better understanding of our needs 💙💙💙
