One Foot In Front of the Other

Our family has owned four dogs that entered our home and our hearts.  We had outside dogs intermittently, but nature - or accidents - ended our associations prematurely.  When Alan was about 15, we acquired our first indoor dog - Cinnamon - a beautiful, red cocker spaniel.  Cinnamon came from our local shelter, before the current practice of having a vet check out dogs before they are adopted.  She was ill, and never quite became well.  Because she was not feeling well, she was not very friendly toward anyone.  Cinnamon eventually (after only a year) succumbed to a tick-borne illness. When we bought our second home, Sera came to us from "the streets."  Sera was about a year old and she'd lived in a cardboard box in front of my best friend's house.  Sera (short for serotonin) lived up to her namesake.  She was a 10 pound bundle of energy.  We worked long and hard to house train Sera, but we were never able to help her be a "good citizen."  She was loved by

Christmas is only a few days away.  Alan will be coming home on Friday for three days.  We are cautiously hopeful that all will go well.  We expect the occasional outburst, but believe we will not have a repeat of Thanksgiving's great attempted escape. In all my "worst case" scenarios up to this year, I never thought we'd be battling our son in such a personal way.  It is heartbreaking to see him become angry, order us out of his apartment, or turn his back on us.  We are his most ardent advocates.  We are also the easiest target. Being a parent means being able to take the punches for your child, standing in harm's way.  Watching the decline when your child has this terrible disease is also part of being the best parent you can be.   I believe parents can stare any enemy in the face when their children are threatened.  Parents will do whatever they have to do to spare their child any hurt or distress. "For God so loved the world that He gave His one an

One thing we have learned in the last few months is this:  it doesn't do to wait until the crisis occurs to get ready for the onslaught.  I think we were frightened of putting Alan in the hospital for behavior management.  We had heard so many nightmarish stories of adults with developmental delay in these kinds of facilities. However, our experience has been very positive and it is heartening that the medical community is beginning to recognize the unique needs of this underserved population.  After consulting with the doctor in charge of Alan's care, we understand that this will be probably be necessary again.  It's no longer an unknown and frightening scenario. While Alan has been in the hospital, we have seen first hand the calming effect of a strict, predictable schedule for our son.  He has lost so much of his ability to "go with the flow" - which was limited by autism to begin with - that we need to provide him with fewer choices, and the security of a

Alan has been in the hospital now for a little over two weeks.  At first, he was angry and paranoid.  He ranted at us, walked away, and was generally agitated when we went to see him.  The last few times we have been there, however, he has been his old self - smiling, happy to see us - and the paranoia has been lessened. Medication changes have worked their magic.  For now, the hallucinations, agitation, and demands for people to be arrested have receded.  Today, we had a meeting with the doctor, social worker from the behavioral unit, Alan's case manager, a care worker, and the director from his assisted living home.  This is truly a wonderful pairing of people to make plans for Alan, and assist us in the transition back to his apartment. I cannot say enough about how important it is to find a group home or assisted living facility that is committed to the residents, and willing to work with families to make the living situation as appropriate as it can be.  We have been so fo

I was thinking this morning about Christmas and the traditions we have established over the years in our family. When I was a child, on Christmas Eve, my father would read the Christmas story from Luke.  We would pray together and as we children grew older, our parents adding communion to our tradition.  I think we were always mindful of the meaning of Christmas.  There was always an sense of hope and anticipation as we waited impatiently for Christmas Day to dawn. My husband had different experiences, but Christmas Eve was a special time in his house, too.  He and his family had lived in Germany for many years, so their celebrations were laced with symbols and traditions from that country. When we married, it worked out that we celebrated Thanksgiving with my family, and Christmas Eve with my husband's family.  We always had a meal together, sang songs, took a crazy family photo, and then drove around the town to look at Christmas lights.  This was when we opened gifts toget

My sister has just finished reading The Hiding Place  by Corrie ten Boom.  Our conversations about how inspired she was as she read through the book have reminded me of the words of truth Ms. ten Boom always managed to convey. Having gone through horrific experiences in a Nazi concentration camp during WWII, Corrie ten Boom came away with a certainty of the goodness of God and His presence in our lives.  Even though she endured near starvation, the death of a beloved sister, and witnessed the unspeakable treatment of the women in the camp by the cruel guards, her faith remained strong.  Not that she was not discouraged or near despair at times, but she became convinced that nothing can separate us from God and His love. The last couple of times we have visited Alan in the hospital, he was back to accusing us of trying to hurt him or confuse him.  We spend a good portion of every hour with him listening to his rants, watching as he walks away from us, only to come back and rant some

Last Monday - was it only a week ago? - Alan finally acted on a delusion he has had for some time.  He believed he was supposed to move into the apartment next door, to protect the women who live there.  For a couple of weeks, he had been moving his clothing to the next door porch, virtually cleaning out his own closet and dresser.  In the middle of the night (which turned out to be early Tuesday morning) Alan broke down the door to that next door apartment and started moving his things inside.  It took several people to convince him to go back to his apartment, leaving behind two frightened residents.  The next evening, we admitted Alan to a behavioral unit in our local hospital. At first he was angry and yelling, just as he had been with us over the Thanksgiving holiday.  For several days, he ranted at us, accusing us of trying to hurt him, telling us he was going home, begging sometimes to be let go.  Gradually, the medication changes have calmed his mood.  He is now speaking to u

As I read my post from yesterday, I felt that I wanted to clarify some points. I believe that God has a plan for each of us.  For some, God's plan is for them to influence nations - Billy Graham comes to mind - and for some of us, it is to make an impact on a smaller number of people. Alan has made an impact on everyone he has ever known.  Even when he has been at his worst, there were aspects of his character - his childlike faith, his insistence on displaying 'good manners' - that have amazed and inspired others.  Here's the difficult question:  What part does Huntington's Disease play in  God's plan for Alan?  My answer is: I don't know. The older I get, the less sure I am about anything except the basics of the gospel - which is actually all there is - that God wants to reconcile us to Himself, and that He is with us in every situation we may encounter.  Why do Huntington's and ALS exist?  Why are children born with Fragile X or Tay Sachs Dise

Parents have dreams for their children.  Although we do not want to live vicariously through our son's life, we have always had hopes for his future.  The realities of life have shaped those dreams through the years.  Our hopes for Alan have evolved and changed. Of course, we were idealistic - as parents usually are - when our son was young.  Optimism fueled our dreams then, when we believed that love and perseverance would overcome all the deficits that Alan struggled against.  That optimism served us well, and gave Alan opportunities that we might have never considered had we not been insistent that he be given all the advantages of any other child.  A friend once commented that when she first met Alan, she wondered how she was supposed to talk to him.  Once she watched us, she felt confident.  "You talk to him and treat him like he is a 'normal' child."    I think our attitude from the beginning of our parenting journey was that we expected Alan to be normal.

Our son has had increasing difficulty with delusional thinking and paranoia.  Over the past few weeks, he has been perseverating on ideas that have made it difficult for him to function day to day.  Monday of this week, all the delusions, hallucinations, and paranoia exploded and we had to admit Alan to a psychiatric unit at our local  hospital. Of course, God had already made a way for us even before we got to this point.  We were able to admit Alan to the best behavioral unit in this part of the state, and the doctor who is working with him is familiar with Huntington's disease.  What a blessing!! The hospitalization was an option that we had discussed before, but the various docs had been reluctant to pursue this course.  The need for admission was a blessing in disguise, since now we can get all his medications adjusted so that he is taking what he needs to take in order for him to be able to function day to day. I feel hopeful that these next few weeks will give all of u