Healing for Andrea

02/17/2022

My Andrea 💜

If you meet my child and he seems off, it’s not your imagination. My son has a hidden disability.

If you talk to him and he doesn’t make eye contact, or acknowledge you, or respond to your question… it’s not because he’s rude. It’s because socializing is challenging for him, and it’s something we have to practice constantly.

If you hear me praising him for simple things – things a 7 year old should do easily – it’s not because we are spoiling him, or because he’s a brat. It’s because things that come naturally for some children take years and years of work for others. It’s because we try to maintain at least a 5:1 ratio of positive encouragement over reprimands, or the poor guy has to listen to being corrected all day.

If my child starts to yell, gets hyper, or acts up and I quietly remove him and we leave, it’s not because we don’t know how to discipline, and it’s not because we are horrible parents. It’s because my child struggles with severe self-shame and I try to enforce discipline and consequences in private, so he doesn’t feel further degradation and embarrassment than he already does by being called out in public.

If my child starts talking to you enthusiastically about a TV show or a video game, it’s not because he’s on screens all day. His screen time is actually quite limited. However some shows and games bring out intense creativity and passion in him, and conversations about characters, places and “what if” scenarios should be encouraged and they help him socialize! Ask him thought provoking questions about Pokémon or dragons and watch my child’s face light up.

Next time you see a child and they seem off, you’re intuition is probably correct.

Give that child a warm smile, and extend it to their mom or dad who is probably nearby and holding their breath. Because 99% of their energy goes into what you don’t see, and they’re probably feeling anxious and hypervigilant. Because judgment and shaming helps no one, but a warm smile can absolutely make someone’s day.

Today’s a beautiful day to give a child and their mom or dad the benefit of the doubt.

Today is the perfect day to teach your children to be inclusive to those who act different. Because some disabilities are hidden in plain sight.

Art via This Mama Doodles
***
Follow Celeste on Instagram at https://www.Instagram.com/theultimatemomchallenge

06/18/2020

💜

Confessions of a Special Needs Mama: I struggle feeling like it’s my fault. ⁣
⁣
I have heard this in many different forms and from many different moms. There is a tendency to think it is all “our fault” and I share that tendency.⁣
⁣
I was told “She’s not gaining enough weight.” ⁣
The immediate intrusive thought I had was “I’m not giving her enough calories or the right types of foods.”⁣
⁣
We still have no answers as to why she can’t sleep comfortably and frequently wakes in pain.⁣
My brain’s answer? It’s your fault for not pushing harder. Researching more. Doing more. ⁣
⁣
When we were told she had brain abnormalities and a rare genetic syndrome, the thought immediately surfaced that my body failed her. Was it because I had Lyme and wasn’t aware at the time? Was it because I wasn’t able to get the correct nutrients to her from being so sick? ⁣
⁣
Slow progress with oral eating or other therapy goals? My fault for not being able to consistently fit in working on every single thing that her care team is telling us to do. ⁣
⁣
Another UTI? My fault for not starting the maintenance antibiotics sooner. ⁣
⁣
Does this thought pattern sound familiar to you? When you have a child with special needs, the tendency of taking on weight that was never yours in the first place is heightened to new levels. We try our best to control in order to cope, but fail miserably every time. The truth is, there are so many things we absolutely cannot control and we have to stop burying ourselves in the weight of finding fault.⁣
⁣
Mamas, it is not our fault and that is not our burden to carry. ⁣
⁣
But, do you know what is our fault? ⁣
It is our fault that our kids our fiercely loved. ⁣
It is our fault that our kids feel safe in our care. ⁣
It is our fault that they know, no matter what, we will show up and fight for them. ⁣
It is our fault that they are getting the best care possible. ⁣
It is our fault that no matter what is thrown our way, we will continue to do our absolute best for them. Because we are AMAZING mamas. And THAT is our fault. ⁣
⁣
Tell me something POSITIVE that is totally your fault. Let’s squash the negative fault finding together. 👇🏻 |Shirt: |

06/12/2020

❤️

For many families with kids who have complex health issues, mask wearing is going to be essential going forward. Unfortunately that doesn’t make it easy. So this mommas been on it like sonic and i think these things might be helpful to some of you too. R & E are 4.5 years old, and tolerate up to an hour of uninterrupted mask wearing after just a few weeks. We’re working up to more but everything about this process requires baby steps, and a metric ton of patience.

1) leave a few masks out in play areas so that they can familiarize themselves with them with out the pressure of wearing them properly in public settings
2) utilize them in play- on dollies or bears, pretend doctor play, etc and use that time to teach them why it’s important to wear masks and how to do it properly
3) when you first put them on your child do it during activities where their hands are going to be busy- building legos, coloring, building with blocks, etc.
4) model appropriate mask wearing and hygiene yourself
5) start with very short amounts of time for wearing and give rewards- 30 seconds to start and then reward with small things like m&ms and other small treats
6) if there is a shirt, material, etc that they find most comfortable purchase an extra and make them a mask from that material
7) avoid any kind of fabric softeners when washing fabric masks! The scent is WAY too strong and can be irritating
8) keep your cleaned, ready to use masks at the front door and make a big to do of getting to pick your mask for any outing. This made it feel special and fun for the kids. the first few times we picked one and then didn’t leave the car. They picked it, got in the car, and then we got take out and went for a drive while they ate. It helped establish the routine with out the pressure of wearing it.

I hope this helps!

02/11/2020

Late post 💜

Let’s pray for a cure 💜 🙏🏻
Andrea’s been having clinical seizures on her sleep, HBP and nosebleeds. Then her ESES epilepsy ( subclinical seizures ) are in 95% of her sleep.
The VNS magnet is been rescuing her at night. Neuropsychological assessment conducted by an IEE showed cognitive declining. We have neurologist appointment next month which will determine how many days she will be hospitalized for a prolonged EEG.
This is extremely stressful for me and it is for her.

💜
This picture was taken thanks to Make-A-Wish Greater Bay Area when my baby Andrea [ now pr***en ] was granted a wish ✨

Yesterday was International Epilepsy Day 2020

11/05/2019

Realities 💜

Sad but true.

11/04/2019

❤️

My son is my hero and the bravest, strongest person I know. ❤

11/03/2019

🤣 😂🙋🏻‍♀️

10/30/2019

❤️ 💪🏻 Yes

❤️💪💪 !

Or parent, grandparent etc.....



Meme credit: CatherineWhitcher.com
Follow

https://www.facebook.com/autismsupermomsmagazine/

10/29/2019

Here to see Andrea’s neurologist and check the VNS battery. We think it needs to be replaced since it didn’t work for the last couple of seizures.
When we came in, the building was closed by the fire department, finally allowed us to get in.
Waiting ...........