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

As Kenny and I talked yesterday, more life lessons emerged in our conversation.  Here are a few: Lesson 5:  Seek God and expect to hear His voice.  Each advent season Kenny, Alan, and I shared special devotional times around the table, celebrating the Christmas season.  One particular year, the book we were using suggested that everyone ask God to give us a special scripture or thought concerning His power in our lives.  We all bowed our heads and were silent for a few minutes.  I honestly can't remember what Kenny and I shared, since it paled in comparison to what Alan spoke.  Looking up with a big smile he said, "God told me I have a crippled heart.  But He will heal it."  We were humbled, realizing that that was the true meaning behind the Christmas season - God healing a crippled world. Lesson 6:  When you worship, sing with all your might, and don't worry about your voice or if you can carry a tune.  Alan has memorized hundreds of worship songs, and frequentl

I am so thankful to have had the privilege of parenting Alan, and I know that my husband feels the same.  Throughout the years, Alan has taught us a lot about life and how to live it with joy and hope.  So I thought I would just list a few of the "life lessons" we have learned from our son. Lesson 1:  Show your happiness at every opportunity.  Alan never failed to express happiness in a situation or with family and friends.  Those who know him will instantly get a picture in their minds of him rubbing his hands together and grinning from ear to ear.  His joy has always been infectious, and gave us all something to smile about. Lesson 2:  Learn something new every day, and always take time to share your knowledge with others.  Alan's famous conversation starter is "Did you know...?" and everyone knew we'd hear something amazing like the date that his favorite magazine was first published, or the publication date and writer of his favorite worship song.

A diagnosis of Huntington’s disease is life-changing.  Because there is no cure, and the disease cannot be stopped or slowed down, there is a relentless march toward the inevitable end:  the person with Huntington’s will eventually be totally disabled and will die from complications of the disease process. We adopted our son knowing that he had a 50/50 chance of inheriting the fatal gene.  After consulting with doctors we decided not to have him tested as a child.    I think that was the right decision.  We pushed Alan to achieve far beyond what was expected of him.  Honestly, we put the possibility of Huntington’s out of our minds and thought very little about testing until we began to see signs that something was not right.  In all the literature I have read, most experts agree that this is the best course for children who are living at risk.  It is unnecessary to burden a child with the sure knowledge that he or she will develop this cruel disease.   As adults, they can ch

It is during the holidays that we feel our losses most keenly.  Perhaps it is the expectation that everyone will unite and a spirit of peace and togetherness will cover all the ills of the year in the past.  Perhaps it is that everyone expects some kind of inner transformation to take place at that time, when we appreciate what we have and look forward to a future year with eagerness. We lost my Dad 10 years ago on November 24.  This year, that was Thanksgiving Day, and his absence was felt by all of us.  Dad was a great man, with an almost encyclopedic memory for jokes.  I have never met anyone who could tell a joke like my dad, nor anyone who had a joke for almost any occasion and any subject.  He was also a loving, devoted husband and father.  We were blessed to have had him in our lives. Alan's illness makes all of us a little more sober this year.  He is distant from us, yet with us.  His suffering tempers all our celebrations. Alan has always looked forward to family ga

Our Thanksgiving with family has come and gone.  Alan is back at his apartment now.  I left him there, and waved goodbye, although he did not acknowledge me at all. Alan was able to stay with us for two days and two nights.  We picked him up from his apartment on Wednesday afternoon.  He was suspicious of us right away so we promised him a milkshake.  We got to the house and he walked in with just his drink.  He had nothing with him - I had purchased clothes for him earlier that day so that we wouldn't have to pack anything. From the beginning he was desperate to go back to his apartment, trying to get out of the doors, yelling at us, begging us to take him back.  He threatened to go to the police and have us arrested.  Kenny and I took turns keeping watch during the night.  We had to be ready at a moment's notice to block his access to the outside doors.  His desperation came in waves.  Alan would be calm for a few moments, then he would begin to become agitated, and s

Right now, I feel like Inigo Montoya, one of the characters in the movie "The Princess Bride." As he said, "Let me explain....no, there is too much, let me sum up." We spent the weekend in ICU with Alan. Saturday, Alan had a grand mal seizure and fell at his group home. His care staff stayed calm and cool, called the ambulance, then called us. We met them at the hospital where we found a agitated and belligerent Alan. He wanted to go home, even though he had cuts and abrasions on this face and was covered in blood. We found him surprisingly agile, wiggling away from the doctor as she tried to examine him. Discussions of how to calm him left us with little choice but to try medication to calm the storm in his mind and emotions. Kenny followed as Alan was taken to CT scan where he had another grand mal seizure. I was in the ER room when I heard the announcement about needing ativan in CT. I knew what that meant, and peered anxiously out the door down the ha

This diagnosis of Lacy's Huntington's Disease has turned me into a fountain of tears. I have been crying at the drop of a hat, crying at work, crying driving home, and crying on Thursday morning in my doctor's office. He listened and asked questions, offering sympathy and comfort. The words he said to me have been rolling around in my mind ever since. "Everyone goes through times of grief and loss, but when something threatens the well-being of our children, that situation is entirely different." When I have had quiet moments I have been thinking about what he said. Parents whose children are in peril are fierce indeed. My husband and I have sought out the help of anyone who could give it, left work at a moment's notice to attend to Lacy in a crisis, lost sleep, mourned together, refused to turn away from the task at hand. I have watched my parents hold each other and sob when my sister was diagnosed with cancer. Their terror was palpable, but the

I think that it is easy, when you are in the midst of dealing with a terminal illness, to let your vision becomes so myopic you can't see anything but what is right in front of you. I often think of Alan in terms of how his health and thinking are being affected, or what doctor I need to see, or what medication I need to check out. Huntington's Disease brings out the frantic mama bear in me. I want to do what I can, more than I can. I lose sleep. I walk in a fog of pain and fear. But today I stopped and thought back to that sweet little boy that we brought home 30 years ago. There are certain pictures that I see in my mind: the picture of him in that cute little suit I made for him. He was 4 and looked like an angel. The picture of the pensive little man on the day our adoption was made final. Remembering our trip to a zoo that same day. Alan with a wide satisfied grin right after his first (and it turns out only) successful part in a Christmas play. I can almost t

Developmental delay and autism both present a major set of obstacles to overcome. A person is not as able to process information as quickly as someone else. The world is difficult to navigate for an autistic child. There are so many challenges to overcome. In addition to these two challenges, we are now dealing with Huntington's Disease, and Alan, who is 33 is deteriorating at an alarming rate. He doesn't eat unless someone sits with him to encourage eating, can't follow many commands, cannot shower or shave without help, and can't understand why. He sits and cries because he is weak and feels that the people who care for him are somehow causing the weakness. We explain, but he looks at us blankly. I am sure there are other families walking this road, and I hope we can find them at some point. No, it won't make the journey any less painful, but sharing the struggles will be helpful.

I finished the Hunger Games Trilogy today. The story did not end with a tidy bow wrapped around it. At the beginning of the books, the reader hopes for a triumphant ending, that evil is destroyed and goodness prevails. The ending was appropriate. Much was lost - many friends, family, security - some things and people endured, but not without scars. The measured happiness that marks the end of the books is tempered by sorrow and loss. As I read these books, I could see some parallels to my life and the struggles my family is enduring right now. Seeing Alan being ravaged by Huntington's Disease is brutal. We would gladly sacrifice ourselves for his survival, but we haven't been given that choice. Instead, we are forced into battle with an enemy we cannot overcome. We can't look away - that would be even worse. We must find a way to walk through this and endure. I don't know how we'll do it, but I know the strength we need will be there as we struggle. In c

When your child is diagnosed with a terminal illness, you start little collections. Pictures that document the way Alan was, the way he will never be again. The first outfit I made for Alan. Art work kept for years in a closet, now precious. Notes from school. His signature on a piece of paper. A cassette tape with his 4 year old voice calling out to me. I can hardly bear to listen to it now, and it may be unbearable later. Today I added an article from the New York Times by the author Emily Rapp. Her 18 month old son is dying of Tay Sachs disease. I collected this article because one of the statements in her article made me catch my breath. Here's what she said: "What I can do is protect my son from as much pain as possible, and then finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go."

Well, we have been dealing with lots of issues lately related to the cognitive changes associated with Huntington's Disease. Alan forgets how to use the telephone, reprograms it with new numbers, or is certain that we have changed our phone numbers and will not answer if he sees the "old" ones on the caller ID. With all the focus on dementia, and the needs of patients and caregivers, Kenny and I were sure that there was a phone that was so simple, it could be confusion proof. Well....yes, they make such a thing! A phone with pictures instead of numbers (although the numbers are available if needed) and can be adapted for the hearing impaired. Alan has significant hearing loss due to strong antibiotics given to him in the hospital several years ago. So, I ordered this phone. We'll see how it works.

When you have a family member with special needs, whether it's developmental delay, autism, dementia, or Huntington's Disease, you so appreciate it when someone who cares for your loved one "sees" them as a person, not as a set of issues or problems. Last week, Alan had to go to a doctor for an urgent health issue, and I met Madeline and Alan at the doctor's office. Some over the counter meds were needed, so I purchased those and headed back to Alan's group home to leave them there. A new staff member will be working with Alan this weekend, and she was being briefed by the head of residential services. I gave the meds to Madeleine, and she told me that this new staff member would be shadowing her for a couple of days. I expressed relief that she would get to explain how to help Alan and how to react (actually NOT react) to his behavior issues. I was almost shocked when Madeline said, "Yes, I want to make sure she understands what Alan is going throug

Today we were in Tulsa at our first HD support group. Four families were represented. We shared our ups and downs, networked, and gave each other a much needed pat on the back. Here's what I came away with: Huntington's takes away...independence, confidence, cognition. A person with Huntington's often becomes isolated. Although a person's recognition of loved ones remains intact, the ability to make decisions, understand situations and conversations, live independently, and deal with stressful situations is eroded. Huntington's gives...the realization that every day is a gift. The ability to see each interaction with those we love is a sweet treat to be savored. The certainty that TODAY is the best it will ever be. The desire to reach out and comfort those who walk the same road we are walking. We shared tears, stories, and many "Ah ha" moments. Everyone left with a smile on his/her face.

Life is like a GPS system. You are going in a direction, then something happens and you have to change course. Just like the voice on the GPS, you hear it in your mind; "Recalculating..." I have been thinking about that analogy quite a bit, and wondering how our family's life would look as a GPS printout. "Head north on marked route..." (New normal with a special needs child) - "Recalculating...continue west on marked route." (Move your child to a group home) - "Recalculating...continue south on marked route." (Diagnosis of Huntington's Disease) We have yet to see where this new route will take us. Still "...Recalculating..." Good to remember - God can always see the route - like the satellites we use for GPS. We might be recalculating, but He's not. He's always known how to get us from the beginning to the end. "...'And you know the way to the place where I am going.' Thomas said to Him, 'Lord we

When we went to pick Alan up for a Doc appointment on Friday, his care worker told me that he has been telling his adoption story to everyone over the last week. "He just started telling everyone who would listen that he was adopted," Madeline said. She told us the story went something like this: "Did you know I am adopted? My mom and dad are not my real mom and dad. They adopted me when I was a little boy, not a baby. They are not my real mom and dad, but they have been good to me, and they taught me a lot of very good things." High praise. We cherish this small window into Alan's mind. We have wondered over the years what Alan thinks about being adopted. Now it seems he is becoming introspective, to a point, and telling that story in his own words. You can't ask for a better commentary on your parenting.

Alan is changing, not wanting to bathe or wash his hair. He has a fear of it somehow, maybe thinking that the showering makes him weak. In his kitchen are glasses of water lined up to drink "in case I get weak" - he believes that this will help him. I am the new enemy today because I told him he needed to shower. He slammed the door in my face as I left his apartment. I don't take it personally, but realized the smiling, happy young man I have known for 30 years is fading. Lots of changes.

I think when we are going though hard times, we often forget that there are people on the road with us, suffering just as we are suffering. I posted last weekend on the Huntington's Disease Facebook page, and found some folks walking this uncertain road with us, suffering with us. The pain, grief, and anger is universal when a child or family member is diagnosed with autism, Huntington's, or any other disorder that robs us of the person we love in one way or another. In many ways we do suffer alone, must suffer alone; but we can take strength from the experiences of others as we walk the uneven road together. We need the support of friends who may not be suffering as we do, but empathize with our suffering and are willing to walk with us. C.S. Lewis said "Friendship is unnecessary, like philosophy, like art... It has no survival value; rather it is one of those things that give value to survival." Connecting to people along the way makes the way easier.

Since Alan's diagnosis with Huntington's, we have wondered whether the behaviors/symptoms we see are autism or Huntington's. We are beginning to realize it is a very fine line. Many of the autisms he has displayed over the years are still there, but magnified. Our biggest challenges are in the areas of behavior, when Alan becomes unwilling to cooperate, or unwilling to participate in daily living tasks. Thankfully, the Huntington's Disease Society presents webinars for caregivers to highlight ways to deal with aggressive or escalating situations. Some of the techniques described in the last webinar are helpful for anyone dealing with someone who has an altered view of the world around them. Our children with autism often lash out because of a trigger in the environment. For us, it has been helpful to assess the situation by looking at what Alan is doing, what he is saying and how he is saying it, and modulate our response to try to defuse the situation. I think t

Today I was in a meeting with other Literacy Facilitators (coaches) in my district. This school year, we begin each meeting with a quick write using a book, poem, or picture as a stimulus. Today we wrote about courage. Being a parent takes courage. I don't care who you are, how perfect your kids are, you need courage to keep parenting (especially during the teen years!) If your child is autistic, you have to have a different kind of courage. You have to be willing to push and push. To go against wanting to allow your child to just 'be himself' and instead push him to be what he cannot be alone. If your child is autistic, he will not be able to understand the world as you or I do. Your child will need you to help him interpret what he sees and hears. I once read a book titled "The Man Who Mistook His Wife for a Hat" written by Oliver Sacks. Sacks is a great doctor who probably understands neurological disorders better than most. In this book, one patient

This morning, I watched the last hour or so of the movie "Lord of the Rings: The Fellowship of the Ring." I do love Tolkien's trilogy. Although he said often that he did not intend to write an allegory, I still see evidences of his faith throughout the books. At the end of the movie, Frodo stands at the banks of a river, knowing he has to keep traveling on in order to destroy the ring. He weeps silently as he considers the ring, and we hear his thoughts as he wishes he had never been given the task of carrying the ring, as it has brought him much sorrow. He then hears Gandalf's voice (and I am paraphrasing) saying that his wishing that he had never been given the ring is shared among "...those who see such times. You must decide what to do with the time you have left." I felt like Frodo this morning. I wish we had never heard of Huntington's Disease. I wish we did not have to watch as our son is slowly taken from us by bits and pieces. T

Now that our son has been diagnosed with Huntington's Disease, we are trying to keep ourselves from looking for "new" symptoms. It is hard to do, since we know we will eventually see the signs that the disease is progressing. Saturday, we visited with Alan for quite a while, sitting in his apartment as we talked. We saw some subtle changes. The undulating 'chorea' movements were more pronounced in his body movements. We hear from the staff who work with him that he sometimes has difficulty walking, and we saw that ourselves when we took him out to eat on Sunday. When I hear of these difficulties, or see the changes myself, it breaks my heart. I am praying that I will come to a point that I will not feel paralyzed with sadness, panic, fear, or anger. I am believing that this will become the new normal and that I will learn to accept the ups and downs of this diagnosis.

I began writing this blog to document the journey of my family as we navigate the world of adult autism and developmental delay. I have written about Alan and his behavior struggles which have been causing him - and us - much difficulty in the last few years. He is on a new medication now that regulates his outbursts. For the first time in years we are enjoying frequent and interesting conversations with our son. What a blessing that is to us. We have lived this last 30 years in a sort of 'garden of eden' of our own. No, it is not perfect, but it is our place, sheltered from the world, where God has blessed us and protected us. We have had a limit to where we could go and what we could do, but that in itself has been a blessing. Just as in the Garden in the Bible, a tree has been growing in our garden. I am going to call it the Tree of the Knowledge of Good and Evil, because that is what it has been. Fruit has been growing on that tree for years, but only now has

Alan has had no incidents of difficult behavior, problems, uncooperative episodes for six weeks now. This medication change has been nothing short of a miracle. Like all miracles associated with autistic adults and children, I think this one may have a shelf life. We rejoice in the "spendor in the grass, glory in the flower" for now, because we know nothing stays the same. But right now, it's glorious!!

We received an e-mail from Alan's caseworker. This one line made my heart happy. "Alan continues to be awesome."

We've recently had a couple of great changes in the way we are managing our son's health and behavior. DHS and a new psychiatrist have really come through for Alan. One of the issues we have had come up over and over is medication management. For a person on Medicaid, finding a psychiatrist who is willing/able to take a Medicaid patient is difficult. We have recently stumbled onto such a person, and what a great find he is! Alan has had so many behavior issues in the last several years. We have tried to find a good mix of medication and staffing, but to no avail. We have provided DHS with a long, detailed narrative of the behavior issues, hoping to get approval for 24/7 staffing. We are on the road to that approval. Provisionally, we have about 18 hours a day of one-on-one staffing. Now to the medication part. It is so hard to make changes to your child's medications. Many times, there is a lot of fear that willy-nilly changes (and we have been subjected to them

I watched the movie Temple Grandin again with the staff from my school. I've spent a few days in our self-contained SPED classroom in the last couple of weeks. I've been thinking that as inspiring as Temple's story is, there are so many autistic children who will never achieve what she has accomplished. Although I think most autistic children have unique and marvelous gifts, many times behavior and lack of social skills keep them from the kind of independent life we envision for them. Alan has a wonderful memory, the ability to "see" the US interstate system, and he can plan a trip in his mind. However, he needs 24 hour a day support to live independently. His behavior is the issue. Try as we might, we can't get enough of a grip on it to help him go any farther. I think the lesson to take away from Temple Grandin's life is that it is so important that we treat our children as equals. "Different but not less." That means that, as far as th

This last week, Alan called me so upset his voice was shaking. "Mom, I want to move out of here!" These were the first words out of his mouth. He had tried to call me several times that day, and was obviously very agitated. As I questioned him, his chief complaint was that "people keep asking stupid questions" and "sometimes they get in front of the tv while I am trying to watch it and I don't like that." We talked for a while, and I told him we needed to have a meeting so we could talk with other staff about his complaints. His dad called him later that night, and by then Alan was calmer. The next day was a repeat. Alan tried to call several times, and I was finally able to take the call. "Jim is touching me and I don't like it!" Jim is one of the staff at Alan's residential program. Alan does not like to be touched. I was not worried that Alan was not safe, but knew he was getting very upset. He was locked in his room and

When you are the parent of a developmentally disabled adult, you measure successes in increments. Last week, Alan called on Sunday to find out when we were coming to get him for Sunday dinner. We discussed a time, and I was getting ready to remind him to shower, shave, and have on clean clothes when he said, "I know...be prepared. I can use the word 'prepared' because it means ready. I am using a new word, 'prepared.'" It made me happy all day because he is still trying to do new things, however small. Thinking back over the last 30 years with our son, I see this ebb and flow of emotion. I have written many times about the ups and downs as a special needs parent. My mother and I were reminiscing this week about the intense nature of our parenting journey. I had a few episodes of deep depression - the kind where you cry all the time and can't stop - as a result of dealing with the constant difficulties in raising a young man who can't control h

The Justice Department of the United States had filed a lawsuit against the state of Arkansas last year. In that lawsuit, the USJD had alleged that the Human Development Centers in Arkansas violated the rights of individuals with disabilities because the residents of these HDC's were essentially kept out of the community. This last month, the lawsuit was dismissed, without prejudice, essentially because the Justice Department had violated its own rules by filing the lawsuit before the state had a chance to rectify the problems cited. This does not mean that it is over, since the merits of the case will be reviewed soon, and the suit may be refiled. Today in our state paper, it was reported that one of the oldest and largest HDC's was going to move their children to private facilities throughout the state. This HDC serves 460+ adults, and 50 children under the age of 18. The thinking of the state is that these children are deprived of an education by being housed in the HDC

This morning came a little too early, as we were up rather late last night. It is a bright a crisp day, and a new year with great possibilities. Alan is going out with staff today. He doesn't want to come home, just wants us to stop by to say hello. I am thankful this new year for friends and family, for the little gifts that make life satisfying. I am thankful for celebrations and for quiet evenings at home. Thankful for wonderful memories, and the opportunity to make more. Happy New Year!