Monday, July 23, 2018

Finding Success In Parenting Children With Social, Emotional & Behavioral Disabilities - Living With FASD

We have many boundaries in place for Joseph. These boundaries keep him safe, help him thrive in a confusing world and if I am honest, they also help us hang onto our sanity during the rough moments. These boundaries are pretty much unspoken. His sibling's don't look down on him for things like, remaining in line of vision, because we don't relate to them as a punishment for bad behavior. Sometimes I can even forget how vigilant we are, until someone makes a comment or begins asking questions.

Recently a neighbor asked, "Is Joseph still around here? I don't see him outside very much." First, let me say that he does spend a great deal of time outside, only he is behind the house in his play area where this neighbor cannot see him. When she stopped by he was already in bed for the night, as he needs more sleep than his siblings. I explained that a 7:00 bedtime is what he needs to thrive, and yes, he is still here. "He needs Dean or I to help him self regulate, which is why you don't see him running into the woods to play by himself," I concluded. She was silent for a moment then said, "The poor boy!" I was a little surprised at her comment as she is very familiar with special needs similar to those Joseph has, but it got me to thinking. 

If you have followed my blog for any length of time, you know that I struggle with the whole boundary thing. Of course our entanglement with CPS over Braden's care did nothing to alleviate our fears, because once you have gone through an investigation, things look very different. You realize you simply cannot be too careful; err on one side a wee bit too far, and things will come crashing down with devastating consequences.

I had to remind myself, "What is my responsibility as a parent?" 

#1. Keep my child safe. If he will go with a random stranger at the drop of a hat, then I must keep him by my side. If he will do or tell anyone what he thinks they want to know, again, I need to be with him at all times. If he has zero self regulation, and will unintentionally hurt someone or push them beyond their comfort zone, what is my responsibility? It isn't his fault his brain is damaged in this area and no amount of talking, therapy, etc. will "heal" him. We need to provide safe guards to protect him from himself.

#2. Help my child succeed. People with FASD have many hidden disabilities, and weaknesses in area's that you or I don't even think about. It isn't their fault. Joseph is successful, when we provide the boundaries and safe guards to help him succeed. This means putting him to bed at 7:00 because he needs ALOT of sleep, without it, he completely falls apart and the whole family ends up frustrated. People often tell me, "But that isn't fair to him, doesn't he get upset?" Of course there are times when he grumbles about it, but over all, he is much happier if we stick to his routine, because he knows he feels better.

#3. Make my child feel loved. Every child needs rules/boundaries in order to feel loved, even though I am sure every child would adamantly deny it! When we force Joseph to "act like a 10 year old," he doesn't feel loved because he inevitably falls short of our expectations. If we parent him like a preschooler, he thrives and feels loved and secure in that environment.

As parent's we often struggle with the fear of failure, especially when parenting children with social, emotional and behavioral special needs. There are many parenting models out there, therapies, diets, supplements, and the list goes on, but at the end of the day who is responsible for the child's well being? The parent of course! If the child is still struggling despite all the intervention's you have put in place, you will naturally be tempted to feel like you have failed your child. Smashing yourself into the rocks of guilt, won't help you or your child, instead ask yourself:

- Is my child safe?

- Is my child thriving/succeeding?

- Does my child feel loved?

If you can answer yes to these questions, then you have given your child a great gift and you are not a failure, even though those who catch a brief glimpse into your chaotic, restricted, lifestyle would likely claim otherwise!

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