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.

Tuesday, February 3, 2015

To the Occupational Therapist Who Set The Bar High

We met you before we had a diagnosis.  You came to our house and worked with our son on what we thought were just delays and sensitivities.  Upon seeing some of your first sessions with him, I questioned your methods and your ability to help him.  I remember you sitting outside with him on a sunny day and trying to get him to touch finger paint.  I remember him screaming and nearly hitting his head on the brick patio.  I wondered why it was important for him to be able to touch finger paint.  But the more I watched you and listened to you the more I learned about the skills he was gaining to be able to function in this world.    I remember he was over a year old and he still would not pick up food to feed himself and then once you finally coaxed him into picking up food without throwing a fit you taught him at nearly two years old how to bite off pieces of food so his sandwiches would not have to be cut up.  You battled him to get him to drink out of more than one color of sippy cup and eventually we were finally able to give him a different color without a forty minute meltdown.

While working with him you saw me at my worst.  I did not know you well and often would open the door with tears streaming down my face from utter exhaustion and frustration.  You always encouraged me and lent a listening ear when I needed to vent.  You always offered new ideas and different methods we could try to help him overcome some of his most challenging behaviors and delays.  You walked into what often looked like a disaster zone of a house and never batted an eye.  You occasionally let my oldest son participate in the therapy session too so I could lay down for thirty minutes after another sleepless night.  While we were working through some of our darkest days and longest nights you showed up every Thursday and showed us progress and gave us hope.

You were there when we finally got his autism diagnosis and helped me work through the emotions that came with it.  We took comfort in the fact that we had already started interventions and were already seeing a positive response to therapy.

Most importantly, you cared for him.  You were as excited and as proud as me when my son would make strides or reach a new milestone.  You taught me how to help him and how to continue to develop skills and make transitions easier, for which I am eternally grateful.

We had to move away from you but there are reminders of your work everyday.  When he uses a spoon to eat he quietly reminds himself "Don't flip".  Whenever he sees little Chef Boyardee containers of ravioli he says "Amy gave it".  When he is stressed or overwhelmed with his environment he asks me to count on him (using the joint compressions you taught me to calm him down).  Whenever he sees a textured therapy ball he remembers you and excitedly talks all about your blue "spikey ball".  The little boy who was terrified of baths and hated water touching his head now showers regularly and loves it.  The little boy who was perplexed by playground equipment can now climb, jump and swing with the best of them.  The little boy who could not go out in public without throwing himself on the store floor or running away now goes shopping with me all the time and holds my hand as we walk to the car.

We still have challenges, we still have a long road ahead, but because you cared we feel equipped for the journey.  Thank you.

I want to tell you a story...

I want to tell you all a story. It’s about a mom who had two babies 12 months apart. And the second baby was different. He was sad or mad...