Adults with FASD and others are concerned media speculation perpetuates stigma.
In less than 24 hours, you will be coming home. You will have completed yet another stay in a care facility. As much as the facility would have us believe differently, there is no cure for your condition. I explained it once to you, maybe you remember? I also told you there is no cure for the condition you were born with.
You have something called Fetal Alcohol Syndrome. It is within a group of disorder known as Fetal Alcohol Spectrum Disorders. Like Autism, there are wide variations in the symptoms that people with this condition have. This is why we see so many specialists.
Why do you have this?
When your birth mom was pregnant with you, she did a lot of things that were not healthy for you, these included using drugs and alcohol. As much as I want to say that she is evil, I can’t. Without her, we wouldn’t have you. There is a pathway in your brain that was damaged while you were still in your birth mom’s tummy.
So, if you can’t be cured of this, or it can’t be fixed, why are we bringing you home? It’s simple really, you deserve the opportunity to live in the community. Like it or not, the facility is not the same thing as a home, even though it is in a community. Not certain that makes any sense.
For most of the last 7 years, we have fought hard to get you supported services so that you could live outside a facility. For 9 years before that, we fought to keep you out of the facilities altogether. Sadly, we aren’t any closer to achieving that goal. And that is okay. Within the state of North Dakota, which we call home, there is a belief that you can live unsupported in the community. I don’t know if you can or not. But, we are going to sure give it a try.
We won’t succeed if we don’t try.
Until now, every time you have been in placement, you have experienced success. This is owed to the fact that you have staff support 24 x 7 while in care. Which is not something we can replicate here at home.
I don’t know what comes next for us, for you. What I do know is that your mom and I love you very much, as does the whole family. In less than 2 years you will be an adult. Where most young people your age are getting drivers licenses, going on dates, and finding jobs; you aren’t there yet.
We have built a great team over the last few years of people to help us through your life journey. It is my hope and prayer that you are successful. What will success look like for you? Honestly, I have no idea. And you know what? That’s okay.
Sadly, while you come home in 24 hours. It could be another 5, 10, or 20 years before you fully understand what any of this means.
I am okay with that.
Like you said last Spring, “don’t give up on me.”
“About that quilt.” I know, the title is rather cryptic. It is not at all descriptive.
And that’s okay. Last Spring, I wrote about the unfinished quilt. Remember? I wrote about how in a situation like ours, we were constantly removing pieces of the quilt and trying different things in their place.
Since we moved last summer, we have made incredible changes. Our family dynamic has changed. We owe this simply to the move into the city from our small community. Jobs changed. Stress levels are reduced. We now have four kids in college.
So what is different?
Simply put – Everything. This time when David is discharged, he will be coming home to a new house he has never lived in. He will be starting a new school. He will have access to activities that weren’t available in our small town. He should have access to a greater range of supports, and all of this means less travel for the family.
No Perfection Expected
I don’t expect perfection and here is why: We are going to experience bumps in this journey. What life is without bumps? But we are making a conscious effort to view the things that happen in David’s life more as symptoms of his condition and not behaviors.
With the Fetal Alcohol Spectrum Disorders diagnosis that we received in 2016, came a lot of research. Number one thing to remember is that David’s brain is physically damaged. Most specifically, the area that controls executive function and emotion response. Meaning, those things that you and I take for granted, he will never fully understand. Frontal lobe brain damage interrupts and affects the emotion response, critical thinking and self-control portions of the brain. What most, including us at one time, view as behaviors, is actually a symptom of the damage in his brain.
It has been a while since we posted, so look for more things coming on. We will talk about the decision to deny our appeal of the Developmental Disability services decision as well as many other things. Other topics will include developmental vs chronological ages, activity levels and other things.
Cheers, Merry Christmas from our family to yours.Tweet #fighting4answrs