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Showing posts from 2010

Persuaded

The old year is nearly over, with possibilities for the new year coming tomorrow.

I was reading Romans 8 today. This is one of my favorite chapters in the Bible, as the words within have seen me through many a rough patch in my life.

Although the last year has seen its share of ups and downs, I am renewed when I read that nothing can separate us from the love of God. No matter what happens, I am persuaded that God loves all of us, God has Alan in His hand. We are not separated from Him when things go badly, or life presents challenges.

I realized that I define myself in many ways as Alan's mother. Sometimes I see myself apart from him, but mostly he is my concern every day of my life. I forget so easily that I need to depend on the grace of God to help make decisions, weather difficult circumstances, find joy in dark places.

Our family has always depended on God to give us wisdom, and to guide us in day to day life. I am renewing that dependence, in my heart and mind, on th…

Neverending Story

During a Christmas dinner this last week, my husband and I were able to reconnect with a long-time friend. She, too has had to navigate this uncharted territory of parenting an adult child with developmental disabilities. We asked how her daughter was doing, and where she was living.

She told us that her adult daughter - who is several years older than Alan - was in a Human Development Center (HDC) in the eastern part of the state. "Angela" was finally in a placement that enabled her to live a productive life, while also maintaining the level of supervision she needed. Her daughter had experienced difficulties with living in a less restrictive community setting until her placement in the HDC. Although the thread of our conversation was interrupted several times with other topics and the usual diverse conversations at a dinner table, we returned to it again and again. It was as if we were grasping at a life raft in a sometimes turbulent ocean. Having someone else share …

It's hard sometimes

I haven't blogged in a LONG time, school getting started, and all the time it takes for me to just sit down in front of a computer.

I wonder sometimes...will I ever get to the point that I can take "bad news" well?

Another set of difficulties for Alan, some medical, some behavioral. Every time I hear about it, I want to go in a corner and hide.

I feel that I have been kicked in the gut.

I feel overwhelmed and wonder "what if" we can't get the behavior and the health issues under control.

Our Thanksgiving was wonderful with family and friends, but Alan did not sleep at all while he was at home. I think I am getting older, and it is so much harder to deal with the non-stop behavior issues.

We signed up for this, and I don't regret a moment, but I sometimes want to wave a magic wand and have this all become simpler.

...We might as well dance....

I was looking on my "social networking" site today and found that a good friend had posted a letter about enjoying life as it occurs, rather than waiting for "someday" and "when the time comes." The last line was: "Life may not be the party we hoped for, but while we're here, we might as well dance."

This reminds me of my father, who passed away 9 years ago. He was a larger than life kind of man, gruff on the outside, but tenderhearted and kind on the inside. He loved his family with all his heart. When I was a child, Dad always encouraged my siblings and I to live our lives with enthusiasm. His motto - not unique to him, but he made it his - was to run into life, arms wide open. "If you fail," he would say "fail with everything you've got!" As we would leave for the day, he would always say "Hit it with exuberance!". His prayer over us as we left on a trip, or went back to college was "Lord, gi…

Temple Grandin

This weekend, we watched the HBO movie Temple Grandin. Temple Grandin was in Northwest Arkansas this last month, although I did not get a chance to hear her speak.

I was so moved as I watched this film. The parallels to our life with Alan were astonishing. Although Alan does not possess the clarity of mind that Ms. Grandin enjoys, so much of the story resonated with me.

We pushed and pushed Alan, always stressing manners, forcing him to get out and be a part of the wider community. And, like Temple's mother, sometimes we have felt that our efforts were just not good enough. Alan has made progress, and is beginning to enjoy some of the independence we had hoped for him.

In looking back on my posts, I see a pendulum swing of emotions, and I think this is not unique to our family. Feelings of elation and defeat sometimes run through our hearts one one day. Feelings of success one day, a sense of hopelessness the next.

At the end of the film Temple explains that her mother's…

Two steps forward...

The summer is nearly over. I will soon be back in school, but our family has enjoyed some wonderful time together in the last couple of months.

Alan went with us to visit family this summer. What fun he had! He joked and laughed with us, was engaged most of the time, and enjoyed all our sightseeing and family meals. Alan slept all night and was awake all day during our four days on the road. But on our way back, he slept all the way. This is not unusual, since he tends to sleep when he is facing a major transition.

When we got him home, he wanted to go back to his apartment. I was a little worried, and for good reason, it turns out, because he has had some behavior incidents in the week since we have been back.

For a while, he was doing really well, and this is probably not a major setback, but I still get this feeling of dread in the pit of my stomach when Alan acts out like this.

Here are the issues I find we face over and over: Alan sees the world as revolving around him, whic…

I don't have to look at a map anymore. I just know it.

We had Alan over to our house for dinner on July 4th. He was very quiet - unusually so. No pacing, talking, clapping. He was able to talk with us, have a great conversation. We cherish moments like this.

As we sat at the dinner table, eating his favorites - barbeque, corn on the cob, squash - we started talking about our upcoming vacation to Wichita, KS. Alan spoke up.

"Dad, I've been thinking. We could take 412 West to Interstate 35, then go north to Wichita. That's the route I think we should take."

There was a moment of silence.

"Alan, that's a great idea," my husband replied. "That's exactly what we will do!"

Alan spent most of his childhood studying maps, particularly the US interstate system. He hasn't looked at a map in a while, so I asked if he had been studying maps to figure this out.

"You know I just know this, Mom," Alan said seriously. "I don't have to look at a map anymore. I just know it."…

Happy Birthday!

Today is Alan's 32nd birthday. I went to see him yesterday. He was excited about his birthday, and the family celebration we will have this weekend. "This is my last day to be 31 years old!" Alan was grinning from ear to ear. I hugged him, saying "I just want to hug the 31 year old Alan one last time." This pleased him.

Today, I will deliver his ice cream cake to the support center, and his dad and I will return this evening to share in the celebration with his friends. Tomorrow, we will take him out to eat at a restaurant of his choice. No, he does not want to spend the night. He wants to get back to his home.

I've been looking at pictures of Alan all week, thinking about the changes we have seen in the last 29 years. He has gone through ups and downs. Our family has enjoyed periods of great joy and devastating defeat. Alan has struggled every day of his life to do his very best all the time. We are proud of him.

He's 32!

Grief and Hope

It is my experience as the parent of a child with developmental disabilities that my husband and I have experienced grief and hope in a repeating cycle. I don't think our experience is unique.

When we adopted Alan, we were idealistic and believed that through sheer force of will and unfailing love, we could help Alan overcome some of the challenges he faced. Many times we would hear of a person who was able to lead a very independent life with the support of caring parents/family. We believed God had entrusted us with this beautiful child because He was going to show us what to do for Alan, and that this would lead to wonderful things. Of course, it DID lead to wonderful things, but not what we had envisioned. As Alan grew older, his disability was an increasing challenge for him and for those around him. School was a nightmare more or less. My husband and I shed many tears over the frustration of trying to fit Alan into the limited resources the public schools had to offer.…

Autism and Tourette Syndrome

When Alan was about 8 years old, he was diagnosed with Tourette Syndrome (TS). Although he had all 14 signs of autism, he also had the motor and vocal tics associated with TS. Tourette Syndrome is getting lots of press right now because the US soccer team goalie, Tim Howard, has TS.

As with many people who have Tourette Syndrome, symptoms can be managed with the right set of medications, and symptoms sometimes disappear during activities that require intense concentration. This is good "PR" for a little understood syndrome. Like autism, TS is a neurological disorder. Unlike autism, TS is thought to be linked to at least one faulty gene. Autism has yet to be linked to any genetic abnormality, although some believe a link exists.

We did extensive research into TS when Alan was diagnosed. His odd behavior and motor/facial/vocal tics could be attributed to TS. At the time, City of Hope Medical Center in Duarte, California was the premier research center for TS. (The Tou…

Ernie Els' story

I read with interest the article in this last Sunday's Parade Magazine about golfer Ernie Els and his family. Ernie and Liezl Els' son was diagnosed with autism, and the family, through the foundation they founded, is building a Center of Excellence for children with autism - a school, medical, research, and recreational activities. Children whose disabilities fall under the Autism Spectrum Disorder do benefit from specialized therapy and education.

I am happy that this facility is being built, and hope that many more like it will be built around the country. While our son had many good experiences in public school, sometimes it was the private therapy that made the difference.

I've included a link to the Els' website.

We like Alan, and we want him to stay....

For most of our time as parents, we have had to fight for Alan to get what he needs. We have heard, over and over, words like "He just doesn't fit in." or "We don't know what to do with him." or, my personal favorite, "Can you tell us what works with Alan?"

Our answer usually goes something like this: What works? If we had the answer to that question, we would be living the high life on the money we made from giving answers to parents with children who have these deficits...

We have struggled to get our son into a setting that we believe will allow him to achieve to his potential. We don't know what heights he will reach, as we have had to modify them sometimes day by day, but we know he can do more that what he has done in the past. We have been very happy with this latest placement, because we see growth in independence, not in every area, but in ways that matter to us, and in ways that make Alan feel good about himself.

I got a call to…

Figuring it out

I am in uncharted territory as I navigate what it means to be the parent of an adult child with autism or developmental delay.

Alan is now nearly 32. We still have to pick and choose where we take him, and when we take him someplace. This last weekend, I went to my family reunion, and chose not to take Alan. I couldn't drive, and had to ride with someone else. Turns out it would not have worked out to have him with me. Additionally, I just feel better in that kind of setting if his dad and I are both there. Sort of a tag team situation.

Right now, Alan paces and claps incessantly, talks to himself, and sings to himself. He is able to engage with others most of the time, but if he is stressed, he will pace and clap even more. We can easily do things like go out to eat, go on vacation, sightsee, because this is easy for him. He enjoys these activities. He does not always want to spend the night with us on the weekend any more, so doesn't go to church very often. However…

Human Development Centers Part 2

Today I read in our local paper that another of the HDC's in Arkansas at Booneville was under investigation. A resident died over the weekend, and an investigation of the death is ongoing.

Editorials in our paper predict that Arkansas will have to overhaul how they house and support citizens with developmental delays and other handicapping conditions. The waiting lists for these HDC's are very long. People wait years to have a place to go.

These are some of our most vulnerable citizens, and we have very little in the way of community support. Some families make their own way, keeping their children at home, making their child's life their life passion. Although we have chosen to try to place Alan in some kind of community setting, we are still very hands on parents. I wonder what would happen if he was a ward of the state, as so many mentally handicapped adults are in Arkansas.

Who knows what will result from the Justice Department probe of Arkansas' Human Devel…

Options for families

I am recovering from surgery now, and have had quite a lot of time to read about some news that affects many families in my state.

Arkansas has 6 Human Development Centers throughout the state. These are places where children and adults with developmental/physical/mental disabilities are housed. A generation ago, when a child was born with such disabilities, he or she was immediately placed in one of these HDC's and lived there for life.

This month, one of these centers is closing. There are many reasons for the closure, but the most pressing one is the loss of Medicaid funding. According to the newspaper, the loss of funding was due to the conditions the residents lived with.

In addition, the state and the other 5 centers are being investigated by the U.S. government for the lack of alternatives for these clients, and the way in which most of them are cut off from the community.

I have visited three of these centers. Alan has been in one of them (during a much needed 3 week resp…

Surprises

I will be undergoing surgery this week. On Mother's Day, we picked up Alan and went to my mother's for lunch. I have this bracelet on my left wrist - from type and match for blood - and Alan noticed it.

"Did you go to the hospital or something?" he asked.

I explained that I would be going into the hospital for surgery this week.

"What kind of surgery? Like when I had my nose surgery?"

I told him that it would be different, more extensive.

"You had gall bladder surgery when I was little." Alan said.

I was surprised - but shouldn't have been. He remembers everything.

He was quiet for a minute. "Will you be able to see me next weekend?" he asked.

I told him no, that I would not, but that his dad would see him.

Although the questions were very matter of fact, I could tell he was a little worried.

"Do you want me to call you this week, after my surgery?" I asked him.

"Yes, Mom, I would like that. I would like to hear y…

If you can laugh at it, you can live with it

Erma Bombeck was someone I admired. Today, on Sunday Morning, there was a retrospective of her career and life.

I think the quote that is the title says it all. I have found that there is something funny in just about everything that happens - if not at the time, then later.

Yes, there are plenty of tragic moments when you have a child with disabilities. But there are also so many moments that make for funny memories, even hilarious ones.

Alan has provided us with so many memories that make us smile. Like the time we were traveling to a different state, and entered a new time zone. Alan was panicked - the time on the clock in our car was not correct. Time is one of the most important things to Alan, and he is quite disturbed if a clock is slow or fast. Alan just sat in the back seat and pointed in horror at the digital clock on the dashboard.

In a real burst of genius, my husband said, "Oh, that's the correct time. But local time is one hour earlier."

Alan relax…

A Truly Empty Nest

I'm going to say that I have been hoping that Alan would become more independent. We want him to have his own life, his own friends, be in charge of his own activities. He is beginning to do that, and I am finding that I am lonely.

It seems that suddenly - and I know this has been gradual - Alan has decided that he does not want to come home. If he does, it is just for a few hours, then he wants to go back to his apartment. This is of course because he has settled into a routine that he likes.

We have always been such hands on parents. We have supervised Alan's every move, made sure he had everything he needed, hovered behind the scenes barely breathing as he took tentative steps away from us and toward independence. And now that he is like most 30 somethings, and does not need to see his parents every weekend, I am left wondering what to do with myself. I miss him. I want to see him and have him at home. But now, for him, home is his apartment.

We love our son. He …

Reality: What a concept

This week I attended a quarterly meeting to see how Alan is progressing toward achieving his goals.

We had mostly really good news. We finally have a good staff mix for Alan, and he is responding well to the people who have direct contact with him. He is getting up in the morning, showering, shaving, brushing his teeth. All without prompts. His room is staying tidy - again without prompts. What I glean from this is: He is happy, and his happiness is manifested in his desire to have a clean and tidy environment.

But, with an autistic adult (or child for that matter) there is often a disconnect from reality, as there is with Alan. He sees something and wants it, even if it does not belong to him. The fact that it does not belong to him only enters his mind AFTER he has taken it. Lots of his friends have lost their soft drinks this way. I know that this can lead to him taking things in other settings, which could potentially be very problematic for him.

He believes that all peo…

Where we are meant to be

I received one of those "make and wish and pass it on" e-mails today. They are usually meant to be encouraging. Most of the people who send me these e-mails are my friends, and we trade them around to say "you're important to me" or "you make a difference in my life."

This one today includes a quote - like a prayer for your friends - that I like. I thought I would include it in my post today.

"May today there be peace within. May you trust that you are exactly where you are meant to be. May you not forget the infinite possibilities that are born of faith in yourself and others. May you use the gifts that you have received, and pass on the love that has been given to you. May you be content with yourself just the way you are. Let this knowledge settle into your bones, and allow your soul the freedom to sing, dance, praise and love. It is there for each and every one of us."

Alan, my husband, and I are where we are supposed to be. It is not…

"I want to stay here and hang out with my friends..."

Home, for Alan, has always been the light at the end of the tunnel every week. He could come home, eat with us, watch tv in his room, visit extended family. Since his placement in the waiver apartments, we have been encouraging him to participate in activities with his peers. We have a monthly activity schedule and go over it every week to see if there is something he is interested in. It has always seemed that he felt that this was some sort of punishment.

This Thursday morning, at 5:10 am, Alan called. "Hey Mom," he said breathlessly, "I don't want to come home this weekend, I don't want to do that. I want to stay here and hang out with my friends. And I need $20 for our trip on Sunday. When will you be bringing that?"

I was surprised. I told him it was fine for him to stay there, and that I would bring the money after work.

When I arrived at his apartment, he was putting his clean clothes away, having finished his laundry. His waiver staff told …

Adoption difficulties

With all the news about the international adoption gone bad, I have been re-living the first few weeks with Alan. Adoption is not always the "warm fuzzy" that is portrayed in movies or on television, nor by some adoption agencies.

When we adopted Alan, we had several months of adjustments. We did not know each other, and were trying to create a family while having no shared history. Alan did not speak, so we could not know what he was thinking, and even if he had been able to talk to us, I am not sure he would have been able to give voice to his feelings. I remember waking up in the middle of the night the first night to check on him. He was sitting up in his bed, silent tears falling down his cheeks. Of course he was frightened. Two near strangers had taken him somewhere he had never been, and it was very frightening.

We had adjustments to make as well, learning to watch out for a little one when it had been just my husband and I for nearly 6 years. We had to learn wh…

Adventures in Autism

Autism is a disorder with many facets. For Alan, it is a fascination with time.

This morning at exactly 6:16am, the phone rang.

"Hello, Mom? I got my shower at 5:09am. I am ready to come home for the day. When are you coming to get me?"

Honestly, I was still in bed, but awake. I told Alan that we would be at his apartment to pick him up at 11:30am. This would give us plenty of time to get there and not be late. It is very stressful for Alan if we are late.

"Ok, Mom, 11:30am. You will be here to get me...Alan...that guy...at 11:30am. I will be shaved and dressed." Alan often refers to himself in the third person.

Alan also has some quirky sayings that we have actually picked up and use pretty often. An example: he likes to say "and be doing that" to mean a continuous action. Pretty good use of the phrase if you ask me.

He ended our conversation with this: "I will be here, and ready, so we can go home, and get my soft drinks, and pace and watc…

Finding a suitable placement

As Alan grew up, we began to consider the options for him as far as independent living. We put off thinking about his long term future too long. I tell parents of middle school children that it is not too early to begin thinking about what they want for their child. I think we felt that we didn't want to hurry Alan out of the house. So he was almost 18 before we realized we needed to find a placement for Alan - and fast!

At 17, Alan was big, and he was bored. He had graduated from high school, and was working in a local sheltered workshop. But he was often belligerent, and sometimes aggressive. I believe that he really wanted some independence, but he didn't know how to ask for that. The organization that served our community had many group homes - ICF/MR facilities - and some assisted living apartments, but the waiting list was long. So we widened the scope of our inquiry. We found a great setting for Alan, but it was about 2 hours away. Eventually, we decided to pu…

Sorta Normal

Occasionally, our son would say something, or do something that was so 'normal', we were delighted. These are stories we tell over and over, because they are so typical of any child, and because, coming from Alan, pretty extraordinary.

Alan was in 4th grade when his self-contained class at school was having a ice cream sundae party. Alan was supposed to bring two cans of whipped cream to school that day. I bought those two cans, and on the day in question, put them in his backpack. He boarded the bus, and I waved to him as I always did. The bus traveled down the road, then abruptly stopped. And didn't go on for a while.

Somehow I knew that those cans hadn't stayed in Alan's backpack....

Yes, whipped cream had decorated more than one student on the bus that morning. I was serious when the school called and told me of the incident. Of course, we would talk to Alan, I promised. Of course, we did not condone such behavior. In my heart, I was laughing. It was so…

Trying to find "Normal"

What is "normal?"

With a disabled child, normal takes on a new meaning. When Alan was young, I absolutely refused to give up any "normal" activities just because we had a child with developmental disabilities. Let me say that I grew up in a home where we were always told the sky was the limit. My sister had some learning disabilities, some physical challenges, but as a family, we forged ahead. My husband had been raised the same way. In our minds, there was no limit to what we could do - what we SHOULD do. The truth is, idealism got us only so far. The result was pure misery.

In those early days, I imagined that, if accounts were written of us, we would be heralded as the family that "never let disability slow them down." Gradually, however, the push to be that normal family took its toll. Two events gave us the insight we needed to stop the mad rush toward failure.

First, we went on a three day, two night camping trip with our church. It was a lar…

Adoption

When we adopted our son, I was so thrilled to finally have a little person in the house. I smiled when I stepped on dinosaurs in the bathroom. I loved it when Alan fell asleep while I was reading a story to him. I treasured singing to him when he went to bed at night.

Alan didn't say much when he was young (another feature of autism and developmental disability). He had a few words, but for a long time, he would not say "Mom" or "Dad". However, he did go around the house whispering. Finally, I got close enough to hear what he was saying - it was my name: "Debbie Goff".

Hence, my husband and most of my friends call me "Debbie Goff". Hey, it could be worse!

Finally, Alan began to talk, and liked to record himself on a cassette tape. One of his favorite things to do was to make, to put it delicately, "bodily function" soundtracks. Alan would make a rude noise - or several at once - then say " 'cuse me!" (for &…

Easter Morning!

Alan spent the night with us last night, and slept all night long - a first for us in several years. He woke up early to tell me about three dreams he'd had.

Easter is a time of hope, and one of my favorite holidays. I am reminded that Jesus rose from the grave, and that all things are possible.

Alan often says that when Jesus comes back, everyone will be well, and no one will be sick, or blind, or deaf. I am looking forward to that time.

For now, I am looking forward to a blessed Easter day, and a wonderful meal with our entire family today. Alan is happy.

On CNN this morning, I saw an interview with Karl Taro Greenfeld about his new book "Boy Alone". He is the brother of an adult with autism. I included a You Tube interview on my links list. Check it out.

"I hope my child dies before me."

Yesterday was autism awareness day, and this morning on CNN there were lots of stories about parents and their children who have autism. For the parents of adult children of severely autistic children, as with any parent of an adult child with developmental disabilities, there are concerns about what lies ahead.

I know the title of this post might be shocking to some, but every parent I have ever met who has an adult child with developmental disabilities expresses this sentiment. The title comes from a quote reported on CNN this morning, and it resonates with me.

I heard a parent say once, "I am praying that I live at least one second longer than my child." I often feel that way. The terrible tragedy is that these developmentally disabled adults are so vulnerable to abuse. Alan is so easily manipulated sometimes, he might be coaxed into doing something he shouldn't do. He has no concept of money, so he could be convinced to give his banking information to someone.

I…

"I did not know I was lost."

In addition to our son's developmental delay, he also has autism. This diagnosis was discussed very early on in his life, but for many reasons, he was not formally diagnosed until he was an adult.

Alan was diagnosed with Tourette Syndrome (also on the autism spectrum) when he was about nine. Because there were so many mixed signals in the process of an accurate diagnosis, it was hard to put a finger on what was going on with our son. Kind of like the forest and the trees. The individual trees (symptoms) were so diverse and myriad, the forest was invisible.

The first time we saw Alan, he was spinning a pair of scissors on the floor, crowing with laughter. His attention was completely on those scissors, and the motion was obviously very engaging. Did he look at us? No, and not for a long time. But he would go back to scissors, or a lid from a jar, or anything that would spin, and be completely enthralled.

There are 14 signs of autism. Alan had every single one of them...

He…

Keep holding on

I had a dream once. I was in the laundry room, and a snake flew out of the washer and landed on me. It was a two-headed snake, poisonous, and electrified, like an electric eel, I guess. In my dream, I had to hold on to both heads, since letting go of either one would mean certain death. At the same time, I was receiving a constant electric shock. Even though I wanted to let go, I held on to the snake until it died and I was safe.

Over the years, I have come back to this image. It somehow gives me courage to hold on.

Up to now, I have not shared my son's name. I don't want to use his name in this blog, so I'm going to call him "Alan." Alan is struggling now to become a successful adult.

Over the last year, we have moved Alan from an ICF/MR (Intermediate Care Facility for the Mentally Retarded) to a Medicaid Waiver program. And ICF/MR is like a nursing home, in that it is staffed much like a nursing home, and the office of long-term care is its overseeing b…

At Sam's club

Well, you see alot at Sam's Club. Yesterday, shopping at our local Sam's, I saw an older woman and her daughter. The daughter was developmentally delayed, probably in her late 30's or early 4o's, but with that innocent look. The daughter was not verbal, but definitely let her wishes be known - she struck out on her own, away from mom, pell-mell thru the warehouse, headed for the door. Mom runs after her, and leads her back with a promise "We'll go home soon." Daughter grabs the first friendly person she sees, obviously pleading with someone to take her somewhere else. Lots of stares, a few disapproving looks, some folks obviously filled with pity. Mom was very patient, and helped to focus daughter on something else. It's times that those that I want to walk up to the person and say "I know what you are going through, I know you are doing your best, it's ok, who cares if people watch?" It takes guts to just live your life. That&…

Six word memoir

My friend, Sandra, asked all her adult friends to post the "six word memoir" - your life (or a portion of your life) condensed into six words. If you read this, feel free to respond with your own memoir.

Technically, a "memoir" is a snapshot in time, not a life story.

Gray hair, blotchy skin - yep, 50!

On the other hand...

If you ever watched Seinfeld, you can remember Jerry often musing over a situation. He propose one course of action, then say "On the other hand.."

There are many of the "other hand" scenarios in my family.

I love seeing my son on weekends. Its great to spend time with him, and to talk with him to the extent he is willing or able to talk with us. On the other hand, he is usually so excited about coming home, the first night he is here, he paces all night, talks to himself, gets into our stash of soft drinks or milk, spills said soft drinks or milk on the carpet. No sleep that night. The next day, he paces up and down in the living room, singing to himself and clapping, unable to really interact with us except to walk around us as he paces. I've actually witnessed him pacing about 24 hours straight.

On the other hand, if he spends more than a couple of nights with us, he gets into our routine, sleeps through the night, and begins to relax. We can end up ha…

Faith and the realities of life

When my husband, son, and I began our journey as a "special" family, I met lots of folks who were devastated by their child's situation. We are unique in that we adopted our son, aware of some of his disabilities, but certainly no more prepared that the average special family for the obstacles and trials we would face. The fact that we are a family formed by adoption is the only difference between our family and others who face similar challenges.

Our deep faith has guided every one of our decisions and has formed our perspectives on disability. In light of our assurance of God's love and His desire for all people to experience a full and meaningful life, I have some very rock solid beliefs.

I truly believe our son was not an "accident of nature", but that he is of great value in God's eyes, perhaps of greater value than we can fathom. If I accept that a child born with superior intellectual understanding, great beauty, or talent is a gift from God, …

Beyond Amsterdam

If you are the parent of a developmentally disabled child you have heard this one:

You booked a flight to Paris - it was your dream destination - but somehow your plane landed in Amsterdam. Now, Amsterdam is not Paris, but it has its points. There is beauty there, you can see things you never imagined, you are entranced with its flowers, the lovely buildings. No, it's not Paris, but it's still great. And you feel richer because you have visited a place that you would never have chosen, but which has brought you great joy.

This story is used to explain the initial confusion, but eventual joy in the experience of being blessed with a developmentally disabled child.

It is a wonderful analogy, and certainly does capture the experience of a parent who is living a different parenting life than was imagined or dreamed about. However...

Your child is now an adult. As comforting and empowering as the Amsterdam story is, it does not capture the experience of the parent of an adult c…