What Can I Do To Spread FASD Awareness?

by Alex Tripp, Collaborator
Once I become interested in something, I try to know as much about it as I possibly can… Example: This binder started out as some handwritten pages in a notebook. I started researching and reading about FASD four years ago and basically, I never looked back. But, I kept wondering… How could I share the information I had and the things I was learning in a way that went beyond just talking to the people in my life?
 
Last September I really wanted to do something for FASD Awareness Month. What could *I*, as one person with a head full of information and nowhere to go, do to contribute to spreading awareness for Fetal Alcohol Spectrum Disorder?
 
Well, I’m what some might call a “social media enthusiast” (and by that I just mean that a very large amount of my time is spent on it). So I headed to what was familiar and started posting information there. Then came the graphics, which I had so much fun making I would sit...
Continue Reading...

No Promises, Just Try

by Alex Tripp, Collaborator
I can remember getting ready for back-to-school myself, and all of the different feelings that would come in the days leading up… Who’s class will I be in? What will I wear? Who will I sit with? Will I know my way around?
After I graduated from college, I started a position as a Child and Youth Worker at a group home for youth with various forms of neurodiversity; including FASD, ASD and ADHD. When it came time for back-to-school for these kiddos, I would think about all of those questions that I used to have and how they were feeling all of those things, and then some…
For children with brain-based disabilities who may have a hard time with transitions, new environments, sensory sensitivities and emotional regulation - I imagined these worries felt even bigger to them, especially for those kiddos who were new to the home or starting at a brand new school.
One of the first things I would do to help the kids prepare would be to...
Continue Reading...

"All About Me" for My Kids

 
by Shannon Iacobacci, Collaborator 
Is it just me, or am I the only one feeling jittery about school starting back up this year? Maybe it’s post pandemic, maybe it’s the uncertainty that if I send my children back into school are they just going to shut it down again and we will be back to virtual learning, or maybe it’s just that my children are going into school and I’m nervous about how they will be treated because of their varying disabilities.
 
I don’t have the answers to all my jitters, I wish I did. Life sure would be a lot easier and relaxing, wouldn’t it? I started thinking, what I have been most concerned about? My child being understood. Understood by her teachers and her peers. The more I thought about it, the more anxious I became as a parent about sending my children to school, and the more my children would feed off that anxiety of mine.
 
I decided to ease my anxiety and my children at the same time by...
Continue Reading...

When School CAUSES Trauma

aubrey page school trauma Jun 29, 2021
by Aubrey Page, CEO

I have googled for a long time, but correct me if I just am a terrible google-r.

I cannot find discussion around the school CAUSING trauma.  When you look up school and trauma you get articles about how to provide trauma-informed care in an education setting. How to support the kids who aren't eating at home and the kids who have to sleep with one eye open.

Let's talk about the kids who have to go to school with one eye open.  The kids for whom school is the most dangerous place.  Why would school be like that?  What would cause that?

Children who should be eligible for special education services can be traumatized by school in the following ways:

- Not being identified and therefore being treated like a child who doesn't need support. Consistently failing at assignments and/or getting in trouble leading to a heightened vigilance or avoidance of assignments altogether.

- Being identified as a "behavior only" child when really the behavior...

Continue Reading...

When the Doctor Said "No Babies"

By Melissa Jan
I remember the day I was told that the % of getting pregnant was well below zero...
 
I was around the age of 18 and when I was told I wouldn’t be able to carry my own baby. I immediately felt a sense of shame and that there was something wrong with me. I never shared this information with anyone, not my mom or my sister. I was ashamed that my body couldn’t produce what other woman’s could.
 
This isn’t my first time telling the story, but it may be the first time for you reading it. I often get asked what are the reasons for not being able to conceive. I am very transparent about my story and once I was told “no babies” I accepted what my doctor told me, which was that due to my Epilepsy and the medication I was taking it did harm to my body in that area. I mean, he was my doctor, I should trust him right?!
 
Fast forward five years and I am about to get married to my first husband, I am at my stagette with my...
Continue Reading...

Their Story: A Biological Mother of an Amazing Daughter with FASD

by Melissa Jan, Collaborator 
I was 12 when I had my first seizure. I had so many that my parents stopped counting. The doctors diagnosed me with Epilepsy. Just a typical 12 year old having to take medication to control them and hoping and praying that I’d never have a seizure in front of my friends was one of the hardest things I went through in my teenage years. Then something even worse happened. I was told by my doctors that my chances of being able to have a baby of my own were less than 1%. My world as I saw it in the future, ended. No, it wasn’t my life goal to just be a mom to my own blood, but knowing now that it wasn’t going to happen, I was crushed.  I didn’t tell anyone, no friends, no boyfriend, not even my family. I blamed myself, if only my brain worked properly if only I didn’t have to take medication that I was told was decreasing my chances of reproducing one day. If only…
 
Fast forward to me at 24 years old....
Continue Reading...

The 5 C's of Responding to an Escalation

by Shannon Iacobacci, Collaborator
I am often asked "What do you do when your child is having and emotional escalation or episode?" That is such a hard question to answer because each child is different, especially those with FASD, brain-based and neurobehavioral conditions. However, in my experience, there are a few things that I have come up with to help me with my own children. I must first remember that this is a brain issue, not a behavior issue. What I am seeing and experiencing is my child’s brain-based disability in action. That being said, first and foremost, safety is key. Keeping my child safe and those around her safe is THE most important thing, and we do what we need to do for safety first. 
 
I have come up with my own 5 C's to remind myself in the middle of an escalation:
 
  1. Stay Calm- This is THE HARDEST thing to do. When my child is turning over furniture, slamming doors, screaming, hitting, biting, throwing things, and everything in between,...
Continue Reading...

Who is The Change Starts Here Collaborative?

 

We just recently launched and are excited about what is to come. We are a collaborative of advocates and educators for neurodiversity. We want to see systemic and legislative change as a part of our work to support families. We see value in neurodiverse individuals and want to see their voices lifted and valued in the discussion. We want to link arms with fellow advocates and fight to improve the quality of life of families while maintaining stability for their children.

So, who is this for?
This is for families of kids with brain-based disabilities. That includes diagnoses like ADHD, Autism, FASD, ODD, OCD, PANS/PANDAS, learning disabilities, and so much more. It also includes kids who don't necessarily have a diagnosis, but have learning or social differences.
This is for families of kids who have trauma. We will always be committed to trauma-informed practices.
This is for families of kids who have mental health challenges. This includes, things like bipolar,...

Continue Reading...
Close

50% Complete

Two Step

Lorem ipsum dolor sit amet, consectetur adipiscing elit, sed do eiusmod tempor incididunt ut labore et dolore magna aliqua.