In a word? It can be pretty exhausting, but truly the worst part about raising a child with an FASD was the part where we had no idea that this was what she was suffering from!
Our child was in our home and a part of our family for almost 2 years before we were finally informed that this was what she had going on. She was almost 9 years old already and, although we had our suspicions, we really could've used this information sooner!
Although my hope was that this was going to be the answer to all our prayers and everything was going to be all better now, there was still a huge learning curve that came our way. We quickly realized that it was gonna take some time to research and then practice better ways to work with her.
Practice makes progress, after all...
Now, it was on my heart to put together a few of our biggest misconceptions about our little lady's behaviors. After that I'd like to share what we realized was ACTUALLY going on with her in order to hopefully bring some clarity.
Misconception #1. "She is always so defiant!"
Reality: Although oppositional defiant disorder can sometimes co-exist with an FASD, we started noticing that there was something a bit deeper going on. A great quote I read on easytolovebut.com will help me explain this.
"What looks like ODD is a result of chronic frustration from living in a world that expects 'typical' behaviors from an atypical brain..."
Just that statement alone helps you step into the shoes of someone suffering from this... and it's gonna take some serious empathy to parent a child with an FASD... period.
In order to understand what this chronic frustration might feel like for our daughter, I decided to watch very carefully each day for some of her triggers. I was watching for patterns in her behavior that would give me some clues as to how we could help her out.
I noticed right away that if I was politely asking for her help with something basic and routine that we do almost daily (like feed the dog or clear the table), there wasn't much of a fuss. If I tried to hurry her along or quickly switched up our plans or interrupted what she was doing, especially if I was growing irritated, she'd become agitated and act out.
Part of having an FASD is dealing with slow processing time. Me telling her to hurry up and get her shoes and grab her bag and get out the door and PLEASE. FOR. THE. LOVE. hurry up.... was literally causing her little brain to shut down. I didn't understand that she couldn't have gone any faster even if she tried harder... and also that the more I got after her, the slower she naturally became.
Misconception #2. "She must have ADHD!"
Reality: There are actually A LOT of kids that are incorrectly labeled as having ADHD and then put on meds when they actually suffer from an FASD. They fidget, can't focus, and are very forgetful.
Another side to what looked like defiance (or being a space cadet) in our home was that she would literally forget what I had just asked of her!
It took awhile for us to realize that the part of her brain that was affected by an FASD severely hindered her ability to remember even the simplest of tasks.
We have learned to only give her 1 or 2 step commands while maintaining eye contact, ask her to repeat what we said, wait for her to perform the tasks, and then thank/praise her once they are completed. Every. Single. Time.
It's easy to take our brains for granted, so I want you to try and picture this scenario coming at a child with slow processing and memory issues that can only remember 2 things at any given time: OK, you need to go upstairs (1), get your pajamas on (2), don't forget clean underwear (3), get your teeth brushed (4), get into bed (5)....... you get the idea.
Misconception #3. "She's really immature!"
Reality: It is actually quite common for a person with an FASD to have an emotional level of development well below their chronological age. Basically, they will act younger than they are socially and emotionally because of the brain damage they suffered in utero.
Our daughter has always gotten along better with kids that are younger than her. Every once in a while she'd play with someone her age, but we also noticed that if she had the choice she'd always veer toward someone at least 2 years younger than her.
Another thing that stood out was her epic tantrums and meltdowns. Praise Jesus they're quite rare now, but when they do hit they're comparable to a child between the ages of 1 and 3... and she's 9. So even here you can see that where she is chronologically, socially, and emotionally are not all the same.
One of the trickiest things about parenting a child with an FASD is that each day can be completely different. What clicked and made sense for her today can be lost tomorrow. When this happens you can start to think that she's faking it or being manipulative again, but she's not. You need to give these guys the benefit of the doubt.
This is actually one of the reasons we started homeschooling. I wanted to know exactly what she was learning each day so that I could figure out why she was so confused when it came time for homework.
Does she have a learning disability? Is she just being a pain in the butt? I've since been told that, although she certainly DOES have the ability to learn, it's always gonna be a struggle when new concepts are introduced. She CAN learn, but it takes a lot of repetition and memorization and sometimes starting all over again from scratch.
She will likely always struggle with things that involve abstract thinking, cause/effect, and even sarcasm or puns. The part of her brain that was hurt just doesn't allow her to understand without someone breaking it all down piece by piece and walking her through it.
Speaking of having a hurt brain, this is a term that my husband and I actually learned from our training under The Family Hope Center in Pennsylvania. It made me feel that if we started seeing our children as having a 'hurt brain' instead of them just being a conglomeration of all their negative behaviors... we would start to see them for who they truly are and for who they can be someday instead of just a nuisance.
When you see your child and think that they're being bad or slow or spacey or moody or whatever... we can remind ourselves that they've actually been hurt in a way that wasn't their fault and they just really need us to help them.
On the tough days, picture your child being the age that they're acting. Don't tell them to "act their age" because they seriously can't. If they're screaming like a 2 year old, love them gently through it like you hopefully would for a 2 year old. Be patient, consistent, and have empathy. If you don't think you can do that because you're so angry for the way they act - please consider professional counseling with someone you can be honest with. Seeking help doesn't make you weak, it makes you stronger for the task set before you.
Please know that I'm rooting for you and that you are not alone. May you be abundantly blessed...