Monday, May 7, 2018

Boundaries - A Difficult But Necessary Part of FASD

Many people with FASD can be successful with well defined boundaries. For our 10 year old son, these boundaries look like this:

- Play with one toy at a time, as too many toys require to much brain power. 

- Play with only one other person. He processes things at a slower pace so keeping up with a group of people taxes his brain and he melts down.

- Stay in line of vision. He has a poor sense of boundaries and does not think how his actions may affect those around him, leading to a break down in relationships. 

- Limited talking. Interacting with people, including talking, requires a lot of brain power, which is a limited commodity. When he over draws, melt downs ensue. Melt downs zap his brain and lower his cognitive functioning markedly, creating a vicious cycle we avoid whenever possible.

If we consistently implement these four boundaries, things go well and Joseph is successful. Sounds simple, right?And it is until I begin to feel badly for him. I feel guilty that he has to live such a restricted lifestyle. It hurts when I have to say no to a request because I know he will not be able to participate without melting down. His limited ability to apply cause and effect means explaining why we don't allow him to do certain things does little to make him feel better. To him it looks like we are being mean. He often says, "You are just being mean, you don't want me to have any fun!!!" He cannot understand that if we allow him to, "do what he wants," his day to day life would have to be even more restricted. 

I often explain it this way; He has a cup of brain power to use each day, he can use the whole cup at once by doing something big and spend the remainder of the day in tears, or we can let him have small freedoms all through the day. There is no excess, nothing like storing up brain power for an extra fun day. To make it even worse, if we seriously deplete the brain power one day, it may take weeks to build back up to one cup daily, meaning his days have to be even more restricted to eliminate melt downs. This is why we are so strict with him, but as a child who lives in the here and now, he cannot understand why we have to ration his daily cup of brain power. 

His inability to understand why he has a different set of boundaries than his siblings causes him no end of angst. If his little sister can ride her bike up and down the drive, why can't he? After all he is 10 while she is only 6! If his sister who is also 10 can drive the four wheeler, why can't he? It isn't fair and he is sure we are, "Just being mean and making his life hard." We have tried letting him do things even though we know it won't turn out well, with the hope that he will realize that we truly have his best interest in mind, but his inability to understand cause and effect quickly eliminated that mode of teaching.

I know in my heart that he NEEDS these boundaries and it will make him happier in the long run if we consistently enforce them. But in the moment it is so much harder to be consistently firm, especially when I know it makes him feel as though we don't love him. I cannot imagine how frustrated he must feel and I try to keep that in mind when he is crying yet again that, "You are just being mean to me!!"

When he was small, I used to look forward to the day when he would be old enough to have more freedom. I thought that we would be able let up on some of our rigid boundaries as he grows, but I am finding that it works the opposite way. The gap between him and his peers/siblings is continually growing wider, meaning we have to be even more vigilant in providing the supports and boundaries he needs to keep him safe. We now realize he will most likely always need a certain amount of supervision and structure to succeed in life due to the damage he suffered before he was born. If I am honest, this looks like a huge task. I feel totally inadequate to provide this level of care indefinitely but remind myself that, With God all things are possible!

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  1. One thing to think about – who is going to provide the boundaries when this child becomes adult in body? I have a 33-year-old son, diagnosed with static encephalopathy, whose life was protected and managed as he was growing up. He did not receive a diagnosis until he was 17 , but we knew there was something that needed to be managed and protected. I was his guardian from age 18 through 29 and then it was first given to the office of public advocacy – the state - and a year later it went to private conservatorship because the court deemed that he was not cooperative and was too difficult to have a guardian. We - and he - did not receive very much support over the years. We - and he - were roundly criticized for being too over protective and enabling or for not doing enough. He was told multiple times that he he needed to try harder. My husband has passed and I am 71. The closest thing we have to support now is the current conservator who seems to understand better than most what his needs are. We pay him a monthly fee and if he does extra we pay him extra for that month. When I am gone, I don’t know who is going to help him have parameters because the world at large certainly doesn’t care. I am not saying you are incorrect. I am simply saying that we need to move to the next step – how are we going to help the adults who want to be adults but who are forever children in many ways?

    1. "how are we going to help the adults who want to be adults but who are forever children in many ways?" I have often asked myself that very question. How did you find your conservator? Blessings!

  2. The conservator was recommended by someone in legal field. I hope he will continue, but he lives quite a distance from my son. Time will tell.


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