Wednesday, May 9, 2018

Dear Struggling Parent You Are Not Alone - Living With FASD

Being the caregiver or parent of an individual with FASD can be isolating. It is easy to feel like you are alone in fighting for your child. You have both physical and mental health problems to maneuver around which are often compounded by trauma, be it from early childhood trauma, or simply from the complexities the individual with FASD faces while traversing the world.

One of the most common responses I get when I post about FASD is, "I am so glad I am not the only one! I felt so alone, just knowing someone else can empathize means so much."

I have often tried to figure out why we feel so alone and I think it has to do with several things such as:

- People with FASD typically do not initially present as having a disability. FASD is often referred to as a hidden disability, which means those with the diagnosis are often misunderstood and/or expected to carry on with life in the same manner as the general public. When they fail to do so they are labeled as stubborn, lazy, defiant etc.... and you feel alone because you know your child isn't "bad," and you wish the public could see how very hard he is trying, how hard you are trying.

- Due to having both physical and mental health issue's, those with FASD often need various levels of professional care. When these professionals fail to communicate accurately the individual can quickly fall through the cracks. The parent or caregiver, in addition to helping them navigate though each day, also has to be a full time secretary who is strong enough to stand up against these providers when things aren't going as they should.... and you feel so alone. It would be such a blessing if you didn't have to be responsible for making sure your child's caregiver's were on the same page and understood the unique complexities of FASD.

- FASD often affects things like cause and effect, boundaries, social skills etc. and as the child grows these things can lead to the need for professional intervention. Knowing your child's behavior is due to FASD and not willful defiance or disobedience, doesn't make the pain any less... and you feel alone because your child's disability presents as behavior problem's leading people assume it is poor parenting, and sometimes deep inside you wonder if they are right!

People with FASD have good days when they can follow directions and are successful at completing tasks. They also have days when their brain simply isn't able to connect the necessary dots. This isn't their fault, it is FASD. This means your brain is constantly evaulating your child's ability, or lack thereof, to perform any given task. No one see's how this wears on the mind and body of a caregiver. It is difficult to explain so you quietly go about meeting your child's needs while silently yearning for someone to understand.

FASD and executive functioning issue's often go hand in hand. Executive functioning include's planning ahead, strategizing, working memory, and controlling impulses among a host of other things. People with FASD often need someone to be their external brain. Human's were created to be in charge of one brain, their own. Being the external brain for one or more additional people has a way of depleting one's reserve's....and you feel overwhelmed and so alone. How do you explain that your brain is tired?

So know you are not alone. There is a whole group of people out there who understand the unique challenge's you face while meeting the needs of the person in your care, be it a child or adult. We understand that the seemingly crazy things you do for your child are because he need's external supports to complete an activity that most people wouldn't give a second thought about completing.

We know that there are times you hide in the bathroom and turn the water on full blast so no one will hear your sobs when your child has just screamed that he hates you and he wishes you would die.

We know the feeling of turmoil in your heart when you hear those words. You know he doesn't really mean it, but it hurts nonetheless. 

We know that attending those weekly and monthly appointments just to keep services in place are draining, that sometimes you wonder if it is worth it all.

We know the how hard it is to put supports in place, to do more than you feel physically able because you want your child to succeed, only to have him back out at the last minute because his inability to understand his world brought on intense anxiety.

We know that hearing the knock on the door and seeing CPS, brings untold terror to your heart because you know your child will tell anyone whatever he thinks they want to hear.

We also know the fear that your child will unknowingly harm himself or others, or that he will take his own life. It is a fear many of us live with daily because we know how truly complex FASD really is.

We have also have days when we say, "I can't go on. I.AM.DONE!" Days when the thought of one more rage, one more meltdown, one more interaction with a thoughtless individual is enough to send you into the depths of despair.

We know the panic you feel at the thought of having to continue doing this for years to come...and you are already burned out.

We know the guilt your feel when you lose your temper, when you yell at your child. 

We know, we understand, you are not alone!

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  1. Oh how the above is so true I am the mother of 6 bio children and two adopted sons one with FASD and I worry everyday about where he will be when I no longer have the strength to run when he spontaneously bolts and will someone understand him like I do when he has a meltdown will someone love him and hug him when really the behaviour is a result of anxiety and fear. I pray everyday that God grant me strength and good health that I can be there for my son who shows no facial features and look like every other little boy walking down the street. I worry as he gets older that if he was to have a meltdown in a public place and says things that may make someone feel threatened will the law enforcement wait till they hear his voice to know my son is challenged and with a gentle voice know that they can de escalate the situation before they hurt or shoot him. I worry everyday. There was a moment where in my weak moment where I asked god why did you let me know this child because I'm exhausted mentally and physically and everyday is a battle with services and school. But I know why God chose me for my son because I love him unconditionally and although at times I weaken and yes my bathroom is my place to have my mommy pity party then I regain my strength I know I'm not alone.
    FASD needs in Canada to be excepted in legistration as a disability like Autism,CP,and many other disabilities so that we can get services to support the caregivers and educate and protect our special children.

    1. Hugs, it is so very hard and often the future looks scary. I have to keep reminding myself that God loves my son even more than I do. My son would totally panic and react in the wrong way if law enforcement needed to be involved in a situation. He panics and either runs or fights. He has no self control and will rage even when doing so will obviously make the situation worse. Blessings as you face each challenging day.


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