Monday, October 9, 2017

When Parenting Is A Struggle - Living With FASD

Sometimes I long for Joseph to be normal, if for no other reason than for my own selfish desire to no longer have to have my brain always working overtime to keep him safe and regulated. I get so tired of parenting a child who will never grow up to be independent, a child whom I love but who exhausts me daily with his inability to follow directions, who has the ability to drive his siblings up a wall with his silent harassment.

One child recently said, "I wish Joseph would just act normal!" Dean replied, "He isn't "normal" like you and I, so how can he?" What makes it really hard is that it looks and sounds like he has it all together, but his actions show there are some major disconnects going on. 

I get tired of constantly directing, redirecting and then following up only to find, he still didn't follow through with what he was told to do. I know it is a processing problem, but it looks and feels like defiance....and he is smart enough to use this as an excuse for times when he doesn't want to do a chore.

Everywhere we go, we have to make sure we have a place for Joseph, will it overstimulate him, will there be a crowd of people, will the people understand and accept that we have firm boundaries for him for a reason? A simple lunch away set off an hour of screaming, throwing blocks, shoes and toys and ended with new dents in the walls. 

I get so weary of him riling his siblings just to get a response out of them. Only to go into a rage when they get upset because, "I can't play with the others and I have such a boring life!"

I feel so smothered by his need to always have Dean or I by his side to guide him through each moment of each day only to have our vigilance undone by a moment's inattention on our part.

I get tired of being screamed at, lied to and manipulated then having to figure out if he was accountable for his actions or if his brain was on overload and he was unable to control himself. Regardless of the reason, I feel the same frustration but I have to keep stuffing it back down because if he senses I am upset, he escalates.

And underneath is fear because he is only 9 but some day in the not so distant future he will be bigger and stronger than I am. Then what? Who is going to physically remove him when he becomes overstimulated and begins tossing things? Who is going to keep him in his room to calm down? Who is going to keep his siblings safe? Who is going to restrain him when his anger gets out of control? 

I know all about the dysmaturity, processing disorders etc behind the actions but when you live with a someone who appears to intentionally irritate and provoke his family, it can be very hard to show grace. I thought we must be unique in this problem until I joined FASD support groups and found that this is often a universal struggle for families. I often feel guilty for struggling in this area, after all it isn't his fault, he didn't choose to be this way, but I find continual stuffing of ones emotions isn't profitable either. 

What do you do when you feel smothered and respite is not an option because no one understands the need to maintain your child's boundaries to the full extent? 

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