Between processing the information I learned at the Professionals Without Parachutes training I took in June, Music & Lego’s camping trips, spending time at my grandma’s farm where there is no service, & getting organized for the upcoming school year; the past 2 months has been very busy and I have not had much of a chance to keep up on my blog. So with that, here is some of the information I learned at the first Professionals Without Training session.
The most important thing I learned that has stuck with me in my day to day activities with Lego is how his brain actually works. This is how Tracy Mastrangelo & Jackie Pei broke it down to an analogy that anyone can understand.
They explained how an FASD brain is affected in utero by alcohol. The Glial cells are the scaffolding cells for the neurons that make up the brain. The brain is built from the stem upwards. Think of it as stacking building blocks or scaffolding. When alcohol is introduced to a developing brain, then the neurons sometimes lose their way and get lost, or they end up where they should be, however they change the message they should have had so they won’t work properly where they are at. Other neurons that are affected by alcohol will simply suffer too much damage and get lost so they die, not making it to where they should be. So now what happens is that you have a brain that has cells in the wrong areas of the brain, cells that are in the proper areas of the brain but have the wrong job so to speak and you have cell gaps that are there because the cells simply died. Different times alcohol is introduced will affect different parts of the developing brain.
Now as a child with FASD grows, we know that they have trouble processing information. Think of the brain a 2 lane highway and the trucks and cars that are on it. Now imagine that those cars and trucks are information coming into and leaving the brain. If that highway is paved going both directions, the information is getting where it needs to go without a problem. Now if it’s 1 lane paved and the other lane is gravel with the same amount of traffic, then it would slow down how fast the information is getting to its destination. But it’s still getting there for the most part. Now imagine that you have the same amount of traffic as a paved highway but both directions are gravel – this would really slow down the information from getting where it needs to be. And what would it be like if we had a single lane gravel road with traffic going both directions? There would be a lot of crashes and traffic is at a stand still. So nothing is getting where it needs to go. This is why people with FASD have trouble processing things. Because of this I now understand better how Lego’s brain works. I also learned that FASD looks different in each individual. It is a spectrum and that it is a consistent pattern of inconsistencies. The same person will function differently on different days and it is far more noticeable.
There is a stigma that people with FASD, their caregivers and support workers face everyday. The stigma and understanding surrounding FASD NEEDS to change. These kids are not bad kids just misunderstood. A new idea that really stuck with me is that ALL behavior is functional. There is a reason it is happening and we need to find out what it is so that we can change what we do, which will eventually help change the end result. I also learned that as a care giver that it is okay to feel like I failed; I just need to change it a bit and try again to help my child be successful. With this population, new needs to be tried everyday to find success.
Also, I finally understand why Lego has trouble sleeping at night and why he is so hard to wake up in the morning. His brain produces less cortisol in the morning which means he is harder to wake up but by the end of the day his brain has produced more cortisol making it that much harder to go to sleep. A normal brain produces more cortisol in the morning which decreases throughout the day making it much easier for someone else to go to sleep.
They broke us off into groups so we could talk about struggles we had as care givers and support workers and things we felt needed to be addressed. From this i learned other strategies that I never would have thought of. I also learned from care givers that came from other countries, were brand new to this because in their home countries its not something that is very commonly acknowledged. Another thing that was said that stuck with me was that the brain is a filing cabinet and for most people everything is filed in order for the most part; but for a person with FASD their filing cabinet is completely out of order and scattered all over the place so it is much harder for them to recall the right information when asked. Diet was another issue that most of us had at some point dealt with. Some people with FASD do better on a very strict diet while others seem to be able to eat whatever without any issues. And when it comes to school, its okay to take a day off to give them some down time if they are having a really bad day. One parent had said that when his son is having a really bad morning, once in a while they keep him home and he spends the day with him at his job or at home to give him a rest. He’s still learning life skills by doing this. Another interesting point that was brought up and only touched on breifly, was how the body ages & changes differently in someone with FASD. I am hoping to learn more about this later.
Another point that was mentioned and is very obvious to most of us, was that FASD isn’t always diagnosed because mothers are scared to come forward. I fully understand this feeling. I was terrified to think what other people would think of me as a mother. But my child comes first, and he needed help so that was more important. Now I don’t care what anyone thinks of me. I am doing the best I can for my child. And I hope with this, that I can reach out to other mothers who are going through what I did, and tell them that everything is going to be alright.
There was so much that I learned at this first session but these are the key points that have stuck with me. I hope this has helped you understand FASD a little better. Because I know it’s made a difference for me.