Wednesday, February 25, 2015

Giving Fear the Finger; Moving Forward

One thing I have noticed most about the special needs community is how overtaken we as parents are by fear and anxiety.  We worry about every aspect of everyday, not because we want to, but because there is so much going on in our lives that validates worrying.

We of course talk about the bigger things.  We worry about will happen to our special needs children when we are gone.  We worry about services and our children's schooling.  We are terrified of the next regression or the next problem behavior that could be lurking right around the corner.  We fear to have more children, because they too might have autism or another condition.

But I have also found myself engulfed by fear during our everyday lives.  I do not speed and I always use my turn signal because God forbid we get pulled over with my autistic son in the car.  It would be a nightmare he would scream and be overtaken by anxiety.  The officer would most likely be clueless and it could escalate into myself and my child being taken out of the vehicle or questioned or worse.

I fear every time we go into a store or a new place that there will be something that will upset him.  A child crying or the store testing their alarms (and yes that has happened, he was traumatized for months and always associated all Walmarts with that terrible sound) pushing him over the edge and causing a panic attack or meltdown from which he cannot recover.  Or even worse causing a traumatic sensory association that will stick with him for next forty outings we attempt.

Every time we lose a service or get waitlisted for a therapy I fear regression.  I fear skills we have worked so hard to master could be lost.  I fear without therapy he will be "delayed' in some areas much longer than he would if we were getting the right services.  I fear every move for this reason.

I fear ever being in a car accident with him in the car.  His brother once ran their power wheels into a tree while he was in it.  He would not get anywhere near the power wheels for months after that.  Once we ignorantly went through a carwash with him in the car.  It took a week and a lot of therapy, a lot of tears and screaming to get him back into the car.  Can you imagine if we were in a car accident?  I fear he would never get back in a car without severe anxiety and panic attacks.

Every time I get into the car without my children, I worry that I could be in an accident and die and my children would all have it so hard and my son with autism would fall apart and regress so far into his own world that he could never be saved.  Every time my husband gets deployed or has to go overseas for work I fear something could happen and my children would be without a father and a provider and we would lose our health benefits that mean so much to my son.

Every time I hear a siren and my son is not with me I panic and my heart jumps into my throat.  Is it him?  Did he get out of the school and get hit by a car?  Should I even send him to school if I can't be with him constantly to make sure he is safe?

I constantly worry about the medicine, the foods, the chemicals to which I expose my children, especially him.  I cried before we gave our youngest her one year vaccines, because even though our son's autism had nothing to do with vaccines there is this culture of fear surrounding our special needs children due to the unknown.

I don't know about you, but there are days when I want to stay in a bubble with my family.  Days when I just feel paralyzed by the fear and anxiety.  But if I let that fear overtake me, I cannot live and maybe even worse my children cannot live and experience the world around them.  Unless we move forward from the fear we will miss out on all of the amazing moments and experiences we have everyday with our children.

Even though I worried about being able to adjust to having a third child with so much on our plates and I worried (and still sometimes worry) about our third being more likely to have autism; we moved forward and I am so thankful we did because she is an absolute joy.  All of our children have brought us so much happiness and I refuse to get so bogged down by fear that I don't get to experience that happiness.

1 comment:

I want to tell you a story...

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