Sunday, February 27, 2011

Big, fat lip

The familiar feeling of dread, apprehension and worry weighed on my shoulders as I drove my 4 year old with high functioning autism (HFA) to the dentist.  This was his second visit.  Since his first time at the dentist was a rather pleasant one (by design), he was focused on receiving his reward from the toy vending machine at the end of his appointment.  Feeling like a bit of a liar, I cheerfully talked with him about the dentist on the brief drive.  I knew he was getting a filling and I had no idea what to expect.  Since he had done so well with his very brief cleaning, the pediatric dentist who specializes in working with children with special needs felt my son would be able to handle this relatively quick procedure without any sedative or calming agent.  I was a bit skeptical, although I was willing to try this since our dentist had done wonders with our oldest son.

The appointment went better in some ways than I anticipated but there was a brief period when he was drilling the tooth that my son tried to jump off the chair and it took the dentist and his assistant to keep him seated in order for him to finish.  I tried to remain in the chair designated for parents and was amused when I realized that my chair wouldn't scoot forward.  Perhaps they didn't want me right up there in the middle of it.  They probably should have tied me to the seat because I couldn't help but lean over and pat his legs, feeling helpless watching him struggle while guilty for making him go through this procedure.

Before long, thankfully, it was over.  Sigh.  Dora's song, "We did it!" ran through my head but I resisted the urge to do a little dance.  Of course, here is the unexpected moment that I really should learn to anticipate.  As we were leaving and I was talking with the dentist, he pointed out that I needed to make sure that he didn't bite his lip which would be numb for about another hour.  At that moment, I looked at Dylan and he was already examining his lip with a confused expression.  "My lip feels funny."  We explained that it was asleep but it would wake up soon.  I told him to leave it alone but I became concerned since one of my son's "issues" is that he becomes agitated when things are not what he deems to be "right." 

I turned to talk with the receptionist then walked with him to the door.  As we opened the door, I glanced at him and saw that his lip was bleeding.  Upon closer examination, I could see that within that brief moment he had taken a nice hunk out of his lip.  Blah!  Turning around and directing my son back into the place he was very interested in leaving, I showed the dentist his lip.  Since this was not unexpected for him, he was not as freaked out as I was and he explained that it would swell and look like a canker sore but would be fine.  He suggested that I find something else for him to chew on until his feeling came back.  Great idea but I had no idea what I could give him until I remembered that we had what I refer to his chew toy in my bag.  Whew!

After feeling the relief of the procedure over, I had a renewed sense of concern as I drove home because I knew it was likely my son would continue to bite his lip despite having his chew toy.  Glancing back at him as often as I felt safe to do so, I monitored him and repeated my instructions, "Chew toy in your mouth."  "Put it back in your mouth."  "Don't bite your lip."

Returning home, I was thankful that my mother-in-law was there to help me keep an eye on him as we juggled my other two children.  Eventually, the feeling returned and amazingly he didn't seem troubled by his now very swollen and nasty looking lip.

It seems like there is no end to the many lessons to be learned as a parent, particularly of a child with special needs.  At moments like this, I feel that I too get a bit of a big, fat lip as I stumble into yet another challenge to muscle through.

Saturday, February 26, 2011

Keeping me in stitches

When we first moved to Utah, I stumbled across an advertisement for sewing classes.  I had practically no experience with sewing but was unexpectedly attracted to attending a class to learn this seemingly foreign skill.  Once a week for several weeks, I escaped the chaos and unpredictability of home and entered the pretty, girly, and organized classroom which was held in a beautifully decorated, historic home.  Surrounded by lovely bolts of fabric, listening to the quiet hum of machines sewing, I fantasized about the many sewing projects that I would be able to do now:  dresses for me, shirts for my husband, clothes for my boys.

Over the next months, I collected patterns, fabrics and more fantasies.  Slowly, I began to organize my materials even creating a sewing area in our bedroom.  It was lovely.  I did manage to sew myself a dress and the boys some shorts and pants but my sewing came to a halt once my first born was diagnosed.  The next time I removed the cover from my sewing machine, it wasn't to sew dreamy outfits.  It was to sew weighted blankets, lap pads, body socks, weighted vests, and so forth.

I don't regret having taken my class.  I'm pleased actually that my new skill is helping my family.  I'm simply reminded yet again of the frequently quoted saying among those affected by autism:  expect the unexpected.  It seems that no matter how much I remind myself off this, I find myself frequently surprised.

Upon opening an email last night, I found myself darkly amused.  Normally, when I think of fabric, my mind tends to drift toward Amy Butler's fabric for instance:  beautiful, girly, upbeat, colorful fabric.  The email I received last night had the subject line of "Fantastic Fabric".  The girl in me thought, "ooooh" what is this?  As I read the description of this fantastic fabric, I couldn't help but laugh.  Instead of reading the description of some delicious fabric, I read the following:

It remains soft until  it is hit or bit or other physical confrontation, at which it instantly hardens then goes back to soft when attack is over.

I read it again.

It remains soft until it is hit or bit or other physical confrontation, at which it instantly hardens then goes back to soft when attack is over.

What?  Even though I have been hit, bit, scratched, kicked and so forth enough times that I should have gotten it, my brain seemed to reject this description of the fabric and I even questioned whether this was a joke.  Surely, it can't be that bad, right?

I'm not sure how many times I reread the email before I truly understand the wondrous nature of this fabric and how useful it could be, particularly for those families whose children suffered from frequent aggressive outbursts.  I thought specifically of a mom friend of mine who has a new scratch or bruise every time we get together.  This actually is fantastic fabric!

As much as the fabric sounds wonderful, though, it is far more expensive than any Amy Butler fabric I would buy or even the Lycra fabric I am constantly seeking for new occupational therapy products.  For a sleeve alone, it costs around $120.  For now, I think I can handle the occasional bruise and I hope that I never feel that $120 is a cost worth spending.  I am glad that it is available though because there are many families who will find it to be a blessing.

After accepting that the email was not a prank and contemplating yet again how stressful autism can be on the entire family, I recalled a blog post that I had read recently ( which suggests that parents of children on the spectrum frequently exhibit symptoms of post traumatic stress disorder (PTSD).  As much as I can relate to certain aspects of these feelings, I am fortunate to not feel that I suffer from it, although I certainly relate.  I would imagine that those parents who are tempted to purchase the fantastic fabric, however, would definitely be at risk of suffering from many, if not, all of the symptoms.

I was recently asked how I dealt with emotions toward my sons after being hurt by them during meltdowns.  I had been telling her about when my oldest threatened to throw chemicals in my face once during a particularly bad meltdown.  She wanted to know how that affected my feelings toward my son.  I explained that there were the immediate emotions of being scared, sad, angry, confused and so forth.  If I didn't love my son and didn't understand how challenging autism is for him, I might have continued feeling that way for a while.  Instead, though, I took time to get away once my husband got home and processed these emotions.  As all parents have to do to some degree, I reached into my heart and found that strength and love for my son.  I found the courage to try to understand him, his perspective, his autism, and to ultimately forgive him.  Of course, I did immediately move the already out of reach chemicals to an even more out of reach area!

Instead of blaming him, feeling betrayed by him, for what he had done, I studied the situation, I talked with him and we found new strategies to help him with his extreme emotions.  Fortunately, he has continued to make excellent progress and I'm hopeful that he will continue to learn how to recognize when he is upset and take steps to avoid an aggressive outburst.  I will continue to also remain hopeful that we won't be needing to buy any fantastic fabric unless it's some lovely, beautiful fabric for a dress for me.

Monday, February 21, 2011

Lost Control. Found Acceptance.

Sooner or later, each of us has to learn the lesson that we are not in control of every facet of our life.  No matter how much we believe something to be true or how much we want something to happen, it, whatever it may be, may not be true or may not ever happen.  Sometimes we know this intellectually and may even be able to refer to events which didn't go the way we had hoped, but the lesson isn't truly learned until something you take for granted, something which is seemingly indisputable, real, definite becomes something entirely different.

I intended to get married.  I intended to have children.  There were times when I wasn't sure if I'd ever find the right man for me but, once I found him, the next step was a child.  I recall my soon-to-be husband and I walking through a crowded city fair when he pointed to a small child and said, "I want one of those."  Definitive, indisputable.

As it turned out, we spent years trying to have children and only succeeded after several rounds of in vitro.  There were times we weren't sure if we'd ever have children. 

We then had our first born son.  My vision of raising our child involved fantasies of staying at home raising him, sharing the world with our child.  Together as a happily married couple who had overcome infertility, we were going to raise our son as we had been raised.  From the beginning, though, things were different.  He cried when gifts were opened - the sound seemed to bother him.  He cried for hours and seemed inconsolable.  He resisted being held closely in order to breast feed.  My maternal feelings were rebuffed and I found myself repeatedly failing and often confused.  Indefinite, disputable.

Since we were growing older and because we already had had difficulty getting pregnant the first time, we opted to try again.  Although we still found ourselves confused about our son's behavior, we felt more confident that we could have another child.  Another child.  We became pregnant with twins.

At this point, we became overwhelmed by our life.  We had chosen a path thinking we knew where it led only to find we were mistaken and we were frightened.  How were we going to manage? 

Obviously, we immediately felt love for the twins who made themselves at home in my quickly growing belly.  We eventually got over the initial panic and began to believe we were taking control over the situation.  New house, new car, new job.  More cribs, better stroller, books on twins.

Preterm labor.  Bed rest for 6 weeks - 4 of which were spent in the hospital.  The more we tried to control the situation, the more it was out of our control.  Each time we found ourselves in an unexpected situation, we began to adjust to the change in plan quicker, we began to accept things as they were more readily.  By accepting the situation and moving forward, we regained yet again a sense of control.  Definitive, indisputable.

Then our first born was diagnosed with a form of autism.  It explained a lot but this was not supposed to happen.  His behavior was not supposed to happen.  The stress in our home was not supposed to be there.  Answers needed to be made available and they continued to elude us.  Autism is anything but clear cut and concrete; however, a year after his diagnosis we began to feel a little more confident.  We had found resources that were helping us define and understand his behavior.

Then one of our twins was diagnosed with autism and we found ourselves yet again surprised.  We had been doing everything in our power to make our life better and new challenges kept presenting themselves.  Just when we thought we were doing ok, we were side swiped again.  No longer truly surprised by life changing, we then became angry because this simply was not fair.  Why us?  Why our beautiful children?

It has been a few months since our youngest was diagnosed with high functioning autism.  It has been over a year since our first son was diagnosed.  We have learned a lot during this time.  We speak the language that parents of children on the spectrum speak:  "Stimming,"  "sensory processing," "melatonin, Resperidone, Zoloft" and so forth.  We continue to navigate this world but we have a new found respect for life's ability to change without notice, plan or schedule.  We no longer think in terms of definites but merely in possibilities and maybes.  We know our own strengths and weaknesses more than we'd ever expected and we are learning to accept what is simply for what is.  Although this may seem to be resignation, acceptance of what is regardless of whether it was in our plans is a power far stronger than having the naive (although understandable) sense of control over one's future. 

As much as I'd like to believe that we will find more answers and that if we simply keep working hard things will turn out in a way we hope, I also have to accept where we are right now for right now is the only thing which is definite and indisputable.  It is my job to make the best of it for me, my husband and our children each moment at a time.
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