An Open Letter to Governor Larry Hogan

I have posted many times about the challenges that my wife and I have faced with raising a son with autism.  He has been attending his current school for a little more than 5 years now and graduates in June.  Upon graduation, we had hopes of getting him into a group home situation.  We feel this would be the best situation for him to continue the progress he has made at his school.  Whenever he comes home for a visit, he tends to regress.  For this reason, we believe that an extended stay at home after graduation would be detrimental to his continued development.

We have been working with various agencies to try to accomplish the goal of getting him funding for a group home.  A few days ago, we received a letter from the Developmental Disabilities Administration in Maryland with news.  The letter stated that our son was classified in the greatest need for funding.  That was the good news.  The bad news is that there is no funding currently available.  On the advice of his transitional coordinator at school, I have written to our Governor expressing the need for additional funding for the disabled community. 

I have posted that communication below.  Similar communications will be sent to my state Senator and Delegates.



Governor Hogan,

I voted for you in the last election, and now could use your help.  I am writing in regards to my 20 year old son who has autism.  Currently, he attends school at the Benedictine School for Exceptional Children in Ridgely, MD.  He has been a student there for the past 5 years and graduates in June.

Our hope is that he would be able to get funding to enter a residential program through DDA upon graduation.  He has been classified in the Crisis Resolution category as having the greatest need for services but that funding was not available and would have to be put on a waiting list.

Sending our son to live at the Benedictine School was one of the hardest things we ever had to do.  However, it was the best thing for our son.  He has made so much progress in their program.  Unfortunately, when he is at home, he tends to regress.  If he were to have to move home until funding is available for a residential program it would be detrimental to his well being.

Governor Hogan, it is for this reason that I write to you.  I am asking that you and the state legislature to provide adequate funding so that the DDA can provide the services that my son, and other members of the community with disabilities can get the services they need.  Thank you for your consideration.

A Not so Happy Mother's Day

Bowie Baysox (Photo credit: Wikipedia)

Here is hoping that everybody had a very happy Mother's Day.  I would like to say that ours was spectacular, but unfortunately that is not the case.

The day started off well enough.  My wife got up with me early and we went to my new church.  After church we went to do the grocery shopping before we started our primary plans for the day.  Our plan was to pick up our son at school and take him to a Bowie Baysox game instead of our usual visit of taking him to Golden Corral for lunch.

The visit started our well enough.  We picked him up, and he was excited about going to the game.  We got to the stadium, and he wanted a hamburger and french fries for lunch.  He enjoyed the game, but unfortunately our Bowie Baysox lost the game.  When it was time to leave, we stopped by the restroom before starting our drive back to his dorm.

That is when our troubles began.  After my son finished urinating, he announced that he didn't want to go back to school and dropped to the ground in the men's room.  Thankfully, another gentleman asked me if I needed help with him, and I had him go to the first aid station to see if they could help.  He called one of the park policeman working security for assistance.

The three of us tried to calm my son down.  We even tried to get my son into a wheelchair to try to take him out to our car.  Eventually, we had to call the fire department and have them send out a crew with a stretcher to try to get him out to the car.  I got him to walk out of the restroom, but he dropped again.  At that point, the security officer, two paramedics and I carried him out to the car.

Once we got him to the car, he got up on his own and climbed into his seat in the car.  We then headed back to school without incident.  Once we got back to school, he ate the dinner that the had for him.  While we were there, they showed us the technique they use for getting him up when he drops.  I hope we never have to use it, but it was good info to know for the future.

Autism and Compartmentalization

It has been far too long since I posted anything on my blog. It has been an even longer time since I have posted anything about my son and dealing with aspects of his autism.  This post will fix both of those items.

My son has always had a way of compartmentalizing certain things.  For example, there are certain games and activities that he will do with me that he won't do with my wife and vice versa.  There will be times that she will try to get him to play one of the word game routines that he does with me and he will quickly change the conversation over to one that he does primarily with her.

Likewise, there are certain activities that he associates with school or the dorm that he refuses to do at home.  Sadly, one of those is using the toilet for his bowel movements.  The school and dorm have been getting him to use the toilet for bowel movements.  There hasn't been any progress on transferring that behavior to the home setting.

Today, we saw another example of how he compartmentalizes certain things.  This time in regards to food.  For the past few days, he has been home on spring break for school.  Originally, he was scheduled to go back to the dorm tomorrow.  Since we have been having an extremely difficult time getting him back to school after breaks, my wife came up with the idea to take him back today after having Easter dinner at her parents' house.

All weekend long, he had been talking about going to Grammy's house to have ham and mac & cheese.  We got to dinner and he refused to eat the ham.  The only thing he would eat was the mac & cheese.  We left my in-laws house and took him back to dorm where we got there in time for him to get dinner.  They had fixed a plate for him consisting of ham, mac & cheese, green beans, meat balls, potato salad and a deviled egg.  After insisting that I remove the egg and potato salad, he then proceeded to eat everything on his plate, including the green beans.

I wasn't surprised to see him eat the ham and meatballs, and of course, mac & cheese is one of his favorite dishes.  I was shocked to see him eat all of the green beans.  If we ever tried to put vegetables on his plate at home he would insist that they be removed from his plate.  Just another example of how he will do certain things at school that he won't do at home.

No Coincidences-Full Circle

My wife and I are regional co-chairs for the Benedictine Foundation.  The Benedictine Foundation runs the school that my son has been attending for the last few years.  Today was the day that we had our regional meeting to talk about the annual Spring Gala that takes place in April.  This year, the theme of the event will be "Roman Holiday."

Since our home does not have a lot of space, my in-laws graciously agreed to host the meeting at their house.  They have been actively involved with the Benedictine Foundation for far longer than my son has been attending the school.  Prior to our son getting in, our nephew, their grandson, was in attendance at the school.  My father in law serves on the Board of Directors and was vital in getting our son into the school.

During the meeting, everybody went around the room to introduce themselves and to tell how they came to be associated with Benedictine.  My wife was first to speak and told how our son was currently attending the Benedictine School and that our nephew was a graduate of the school.  A few other people told theirs stories.

Then it was my father in-laws turn to speak.  He spoke about how both of his grandchildren were students at Benedictine and how much the school had helped them.  Then he spoke about an event that occurred nearly 50 years ago when he was in the United States Air Force and stationed in Taiwan.  He talked about how he and my mother in-law decided to adopt a local child to add to the family.

When they got to the orphanage, the nuns took my mother in-law to one part of the orphanage, and my father in-law to another.  After they each toured the facility, they met up and both had found the daughter to add to their family.  They found out that the girls were twins.  They decided to adopt the sisters to keep them together.  One of them became my wife and the mother of my son.

Now, I had heard the story of how they came to adopt their two daughters.  What I had not heard, and neither had my wife, was the fact that the orphanage was run by nuns from the Benedictine order.  In fact, one of the nuns was from Minnesota.  Years later when my in-laws related the story to Sister Jeanette, who was the driving force in making the school what it is today, that she knew the nun that was in the orphanage.

I am sure that a lot of people will think that this is all one big coincidence.  I prefer to think that it was more like the Hand of Providence.  How else could you explain that my wife and her sister would be in an orphanage run by Benedictine nuns, both would have sons with autism, that would attend a school founded and run by Benedictine nuns.

Happy Mother's Day

Happy Mothers Day #family #fam #mom #dad #TagsForLikes #brother #sister #brothers #sisters #bro #sis #siblings #love #instagood #father #mother #related #fun #photooftheday #children #kids #life #happy #familytime #cute #smile #fun via dickster1961

First off, I want to wish all of the Moms out there a very happy Mother's Day.  This morning, we got up early and I drove my wife out to my son's school on the Eastern Shore so that she could have lunch with our boy on Mother's Day.  We decided to just have a little visit with him on campus.  We had a pizza delivered and after lunch we walked around campus and spent some time on the playground.  He was more interested in going back into the dorm to watch some DVDs that I had burned and brought for him.

That was not our original plan for Mother's Day, nor is it our usual routine when visiting our son.  Our original plan for Mother's Day was to pick up our son for an unscheduled weekend home and to take him to a Bowie Baysox game today, then drive him back to school.  Normally, when we visit our son, we take him off campus for lunch at Golden Corral and then either to Target or Walmart to get a new CD or DVD.

To explain why we changed our original plans and normal routine, we had to go back one week to our last visit with our son.  It started like several successful visits of late.  We picked up our son shortly after 11:00 and headed out to the Golden Corral in Easton, MD.  He ate three plates of his favorite foods from Golden Corral; pot roast, bourbon chicken, mashed potatoes, and macaroni & cheese.  So far, it was the start of a very pleasant visit.

After lunch, we got back in the car and headed to Target.  Once there, my son headed straight to the back of the store to the music department to find a CD or DVD.  He walked up and down each aisle looking for something, but just couldn't find anything that he wanted.  With my son's autism, even though he is very verbal, he sometimes has a difficult time telling us what he wants when he can't find it.  That is when things took a decided turn for the worse.

One of my son's undesirable behaviors is one we refer to as dropping.  If he doesn't want to do something, or is upset for some reason, he will drop to the ground, make himself dead weight, and refuse to get up.  When he drops, it can last for a few moments, or in some cases quite a long time.  This particular incident was one of the longer ones.  We spent over two hours trying to calm our son down, figure out what he wanted, and get him back to school.

We tried singing to him, stroking his hands, bringing him CDs and DVDs of acts that he has enjoyed in the past.  Nothing worked.  We got a few smiles and responses but we just couldn't get him off the floor.  At one point, we called the school to see if they could send somebody out to try to help get him back.  At long last, my wife came back to where we were with something that got our son off of the ground.

One of the things that my son likes to watch is, of all things, infomercials.  He particularly likes the ones that feature vacuum cleaners.  My wife came back with an inexpensive, rechargeable portable Dirt Devil.  That did the trick.  He got up, grabbed the vacuum, and headed to the front of the store just as the back up from the school showed up to help.  Now, he has his own personal vacuum in his dorm.

After an incident like this, it usually takes us a little while before we try to venture back out.  We were very hesitant to bring him home for the weekend for fear of a repeat performance at the stadium.  We were also very hesitant to try our usual routine of lunch at Golden Corral.  As it turned out, we had a nice little lunch and visit on campus, and he was in a great mood when we left.

Happy Birthday!

19 years ago today, I found myself in the car at 2:00 AM driving my very pregnant wife to the hospital in a spring rain.  She woke me shortly after 1:00 to tell me that she thought that her water had broke.  Once we got to the emergency room, we discovered that, in fact, her water had broke, but she wasn't quite ready to deliver.  So they took her to a room, and we waited.

After a few hours, they made the decision to induce labor.  It took a while to get the dosage right.  At first, they gave her too much of the drug and her contractions started too strongly and too quickly.  So, they backed off on the IV and my wife was able to get a little rest before all the real fun would begin.  Around 6:00-7:00 PM my wife started pushing in earnest.  Shortly before 9:00 my son entered the world.

It was without a doubt the proudest moment in my life.  The entire time my wife was pregnant, I steadfastly declared that I did not care one way or the other what the sex of our child was going to be.  One he came out and I was told we had a boy, I have to confess that my chest stuck out a little bit further.

Over the years, it has been quite an adventure.  From birth to about 2 years of age, our son appeared to be completely normal.  He was hitting all of his milestone markers on time and in a lot of cases early.  Then all of a sudden around his second birthday things changed.  His progress became delayed. We got him involved in early special education classes where a specialist from the school system came to the house a couple days per week.  By his 3rd birthday he started taking a bus to a school for children with special needs.

In the intervening years, there have been a lot of emotions and struggles.  There was a lot of denials about the  final diagnosis of autism.  I struggled a lot at times.  You see, I have always been considered a smarter than average person.  I was a nearly straight A student, always made the honor roll, and participated in talented and gifted programs.  I thought, "How could my child be mentally delayed?  He has my genes."

A few years ago, we made the difficult decision to try to get him into a residential school program.  It was one of the hardest decisions we ever made.  Several of the struggles and challenges of adjusting to this decision have been chronicled here on this blog.  It has been one of the best things that we ever did for our son.  At one point, I always thought that my son would live with us as long as we could care for him.  Now we look to the day when he will graduate in 2015 and enter a group home.

Today, we drove out to see him to celebrate his 19th birthday.  We decided that we would throw a little pizza party for him, his dorm mates, and the dorm staff.  One year ago, we couldn't get him to touch pizza.  The only thing he would eat was chicken, bacon, potato chips and Cheez-it crackers.  In fact, my wife and I couldn't eat pizza in front of him because he would gag.  Today, he ate six big slices of pizza, more than my wife and I combined.  We even offered him boneless wings and he chose more pizza.

Even with all of the progress he has made, he still has a long way to go.  For example, he still has not gotten to the point where he will have a bowel movement on the toilet.  I never really liked changing his diapers when he was a baby, changing Depends now isn't any fun either. He still has several undesirable behavioral issues.  He will drop to the floor if he doesn't want to do something.  He still hits at people and throws his glasses.  It has been a struggle and will probably always will.  I wouldn't change a thing.

Happy Valentine's Day

Sorry I haven't posted here much of late.  I have been out of sorts a bit and just haven't felt like writing anything.  Nothing serious.  Anyway, I wanted to take today to wish everybody a Happy Valentine's Day.  I hope that you are able to spend the day with somebody special.  Today will be a special Valentine's Day for us, because not only will I get to be with my wife, but she is picking up our son today for a weekend visit home.

Last night, I had to go by my doctor to have him check something out.  He ended up giving me a prescription for an antibiotic and an anti-inflammatory.  After leaving his office, I ended up having to go by Target to get them filled.  While waiting for the prescriptions to be filled, I decided to browse around the store.  I had already gotten my wife her main gift, but decided to check out the candy aisle to get her a little something extra.

I always like browsing around stores the day before a holiday to see the last minute shoppers, though as a matter of full disclosure, I did still need to pick up a card.  Given that guys are the ones that usually have the reputation of waiting until the last minute to do their holiday shopping, I found it interesting that most of the people in the card section were women.  The candy aisle looked like it had been struck by a tornado.  I did find a nice little box of Godiva Truffles to add to her main gift, though I would not have been stressed if I hadn't found a box of chocolates.

Up until about 8 days ago, I had no idea what I was going to get her for Valentine's Day.  Then I received an email from one of the autism causes that I belong to on Facebook.  Designs by Ja9 sells jewelry to support autism awareness.  The piece I bought her is the red heart with the puzzle pieces embedded in it along with a silver chain so she could wear it. The puzzle piece was created by the National Autistic Society to be the symbol for autism awareness.  The best part is that Designs by Ja9 donated $10 of every sale to the Autism charity of your choice.

Time for June Break

Tomorrow is the end of the current school year for our son.  My wife will be heading out in the early morning to go pick him up and bring him home for one of his longer breaks, two weeks.  He is set to head back to school on July 5th, which will allow a nice visit home.

The program that my son is on with his school is essentially a 12-month program with the new year starting in July.  The July session usually runs about 5 or 6 weeks and then a second summer break in August.  During the August break we will take our annual trek out to Ocean City.

With the beginning of this June break, I will be taking a rare weekend off of my weekend pizza delivery gig as we have a lot of activities planned over the next two weeks.  Friday night is Autism Awareness night at the  Bowie Baysox stadium.  It is one of the nights we make sure to attend during the season.

Saturday night, my in-laws are having a party to celebrate their 50th wedding anniversary.  My son is looking forward to attending the party.  I am just hoping that he will be well behaved.  Normally at events like this we have to worry about keeping him entertained.

Sunday, we have another Baysox game on the calendar.  As soon as the promotional calendar was released and I saw Sunday's promotion I knew that we would have to attend the game.  Sunday is country day and will feature the Cowboy Monkey Rodeo.


I googled Cowboy Monkey Rodeo and discovered that they have monkeys dress up like cowboys and ride dogs around like horses.  Let's face it, as a guy, you just can't beat a day of baseball and monkeys.  I will definitely be trying to get some good photos for the blog.


In addition to all the fun stuff we have planned, we also have a lot of other not so fun things we have to take care of before he returns to school.  Each year, he has to have a check up from his doctor and a form filled out from his dentist.  Both of those should  be an adventure.  We will see how the next two weeks impact the amount of time I spend blogging.

Preparing for Adulthood

Image via Wikipedia

We have a lot of things upcoming that we have to take care of for our son.  It is a big year for us because in a little less than two months, he becomes an adult.  Consequently, because of his disabilities, we have to get started with a couple of processes.  Today, my wife and I met with my in-laws since they have already been through these processes with our nephew.

One of the things that we need to get started with is applying with the Social Security Administration to receive Supplemental Security Income (SSI) for our son.  SSI is a program that helps the aged, blind, and disabled people with little or no income to provide funds for basic needs like food, clothing, and shelter.  We have an appointment with SSA at the end of the month.

As my son has gotten older, it has become painfully obvious that he will not be able to provide and care for himself as he enters into adulthood.  We have known all along that this would probably be the case, but we have always held out hope that he would be able to do more things for himself and be able to work.  Currently, he does do a little work in a sheltered workshop at school, but his ability to consistently work and earn money is lacking.  He made less than $100 last year.

If my son is declared eligible for SSI benefits, it would be a tremendous benefit for our family.  I would be made the payee of the benefits, and would have to set up a custodial checking account for him.  All of the money that gets paid into the account would need to be used for his needs, such as food, clothing, medical expenses, and some entertainment.  We will need to do detailed record keeping of how we are using the funds for his benefit. I am hopeful that the this additional income for him would allow me to cut back or stop working at my pizza delivery job.

The other thing that we are going to have to do is meet with a lawyer to apply with the courts to have guardianship of our son after he turns 18.  This will allow us to be the ones to make decisions for his care and well being since he will not be able to do so.  The government assumes that when our son reaches the age of 18 that he will be responsible for making his own decisions for his care unless the courts say otherwise.  My father in law provided us with the name of an attorney to get the process rolling.

It will be important for us to retain the guardianship after he turns 18 for a number of reasons.  In the event that he ends up needing medical care for any reason, that we be able to make those decisions for him.  Without having guardianship, if our son says he does not want treatment, then the doctors would not be able to legally treat him.  It will also allow me to retain him on my health insurance plan at work.  Wish us well as we embark on this next phase of being the parents of a child with autism and other disabilities.

Related articles

• Social Security Disability Benefits: Are You Eligible for It? (socyberty.com)
• Social Security Q&A (seattletimes.nwsource.com)

Once Lost, Now Found

Image via WikipediaA lot of times, when I watch the news, there is no real connection to a story being coverage.  I might sympathize briefly or have a thought about a story, but soon I don't give it another thought.  Then there are stories that I connect with on a more emotional level, even though I may have a personal relationship with the subject matter.

I tend to really connect with stories about kids.  Stories about special needs kids, especially kids with autism tend to get the most emotional responses from me.  It brings a tear to my eye when I hear stories about the girl with Downs Syndrome who gets named homecoming queen or the autistic boy who finally gets to play a few minutes in a high school basketball game and lights up the scoreboard.

I get a different kind of tear in my eyes when I hear stories about bad things happen to kids, especially to kids with special needs.  I grieve for the parents and loved ones of that child.   Whenever anybody harms any child, I have a visceral, angry reaction.  There is no such thing as cruel and unusual punishment for anyone that hurts a child.

For most of the past week, my local news has been following a story that has ultimately triggered both sets of emotions.  Robbie Wood, a young boy with autism, wandered away from his father while on a hike at North Anna Battlefield Park.  As the father of an autistic boy, I know how panicked we have gotten when our son wandered away from us in a shopping mall and been out of our sight for even a few moments.

Over the next six days, the news reported on the number of volunteers who would meet each day at Kings Dominion to search for the missing boy.  Over 6000 volunteers participated in the search.  As every day passed and Robbie was not found, I was slowly starting to fear the worst.  Finally, yesterday, they found him lying near a creek, cold, wet, and shivering but in good shape.

Thankfully, this story has a happy ending.  Robbie was taken to the hospital and given fluids, warmed up, and reunited with his family.  Worry and fear have passed and given over to relief and happiness.  Would that all such stories could turn out this way.

Related articles

• Assumptions and Autism: My Child Has Empathy (blogher.com)
• Autistic boy found alive after several days missing in woods (news.blogs.cnn.com)
• Autism in the News - 10.24.11 (autismspeaks.org)

Summer Break is Over

I always get a tad melancholy whenever my son has to go back to school.  It has been 10 months since my son was accepted and the county agreed to have him attend school away from home.  While intellectually we know it is the best place for him to get an education, emotionally it still takes it toll, especially on me.

When we first began this journey, I wanted to go with him every time we took him back to school, and I wanted to go with my wife to pick him up whenever he had a scheduled break to come home.  My office was very willing to work with us to allow that to happen, however, we eventually decided that I did not need to go to pick him up.  This way, I could build up my leave in order to be able to take a family vacation like we did in August.

We soon discovered that my son was very much in tune to my normal work schedule.  He knew that it was normal for me to be home on the weekends.  He also knew it was not normal for me to be home during the work week.  Consequently, if I stayed home on a Tuesday he knew it meant he was going back to school.  He would refuse to get off the ground.  We would try tricking him by having me leave and go somewhere until my wife gave me the sign that he was in the car.

After a couple of wasted days off where we could not get him back to school, we eventually came to the decision that I would go into work on the days he went back to school and my wife would try to get him back to school on her own.  So far, that has actually worked fairly well.  She has been able to get him back to school on time, though she has had to resort to a little trickery and/or deceit to do it.

As I said, I always get a little bit down when he goes back to school.  Yesterday, however, I was moping around the office a bit more than usual.  I don't know if I was more tired than usual, which certainly could have contributed to my malaise.  The big part of it is that I did not get to say goodbye to him before he went back.  Yesterday, he was still sleeping when I left for work.  A lot of times, he is awake and I can at least tell him I will see him later, even if it is a few weeks later. 

I suppose I should dwell on the positives.  In the past 10 months we have seen some improvements that we had not seen previously, though we still have a long way to go in a lot of areas.  I could also think about how much easier it is around the house when he is at school, and how I have the freedom to watch what I want on television or do what I want on the computer because he isn't around to take those things over.  Or perhaps I feel guilty because I do think about those things.

Related articles

• Labor Day, a Melancholy End to Summer (dorothyadele.wordpress.com)
• Back to school (mostlyyummymummy.com)
• How was your back-to-school send-off? (timesunion.com)

Labor Day Weekend

Image via WikipediaIt is the start of the Labor Day weekend here in the States.  For a lot of us, it means a nice three day weekend and the end of summer.  There will be a lot of cookouts and one more trip out to the beach.  We have a very full weekend planned for our family.

First off, tonight we have tickets to one of our favorite activities, the Bowie Baysox.  Tonight is their annual Autism Awareness night at the ballpark.  As the father of an autistic child, it makes me happy that they recognize those with autism.

Saturday, we have tickets to a new event in our annual, the Baltimore Grand Prix.  I attended a few local stock car and drag races when I was a kid, but this is going to be something new for our family.  We hope to see Danica Patrick practice and qualify for Sunday's Indy car race during the morning, and then a LeMans series race in the afternoon.  My son is excited to possibly see Danica drive.

Sunday, we will be headed back to the Baysox for Meet the Team Day.  We are also members of the Baysox Boosters.  After the game, the Baysox will be providing a crab feast for the team, staff members, and the boosters.  It should be a good time.

Finally, on Monday, there is one more Baysox game, weather permitting.  They are calling for a pretty good chance of storms.  Then it will be the end of my son's two week break before heading back to school.  One last hurrah as it was.  I hope everyone has a safe holiday weekend.

Autism Awareness Month

Image via WikipediaSince April is almost over, I have to confess that I have been somewhat remiss in mentioning that April is Autism Awareness Month.  As I have mentioned before, my son is autistic, as is one of my nephews.  Since my son was recently home from school for spring break, I want to talk a little bit about autism, how it has affected our lives, and a little of his progress at his new school.

Autism is a complex neurological disorder that is characterized by a impaired social interaction and communication.  Those who suffer from autism display a lot of repetitive behaviors and rote communication.  According to AutismSpeaks.org, it is estimated that 1 in 110 children will be diagnosed with some form of autism.  It is more prevalent in boys.  As I said, my son ani

Those with autism display a lot of repetitive behaviors.  My son likes to listen to music or watch videos.  He will listen to the same song over and over again, and not the whole song.  When watching videos he will play a few seconds, then rewind to watch those same few seconds over and over again.  I remember taking a family vacation once where we drove from the DC area to the beach in North Carolina.  For about the whole 8 hour drive, my son wanted to listen to Kenny Chesney's "When the Sun Goes Down" for just about the whole trip.  Each time he started it over, he asked me to sing.

Change to routine is very hard on a person with autism.  With our son, there are certain activities that he associates with me, and others he associates with his mom.  He also tends to compartmentalize certain things.  For example, we have been trying to get him to drink milk out of a regular cup instead of a sippy cup. He is perfectly capable of drinking out of a regular cup; he will drink water from a cup.  However, in his mind, milk belongs in a sippy cup because he has always drank milk from a sippy cup.  He refuses to drink milk from a regular cup.

My son and his water drinking is a bit of a triumph.  He stops at just about any water fountain to take a drink of water.  At home, he will often go to a bathroom sink, turn on the water, and drink directly from the tap as if it were a fountain.  During spring break, I gave him a styrofoam cup with water in it to drink from.  After he drank the water, he apparently wanted more and headed upstairs to the bathroom sink.  Instead of drinking from the tap, he refilled his cup and drank from it.  I was so proud.  We take great pleasure in these small victories.

Like any disorder, the severity and symptoms can vary from person to person.  Some people with autism are completely non-verbal.  My son, on the other hand, never seems to stop talking.  For the most part, his language is not typical conversation.  For example, if he wants to tell you something, he will usually phrase it in the question.  If he knows we are going to go to a baseball game, he will ask us, "Where are we going on Saturday?"  I will usually say, "I don't know," and ask him the question again.  He will then respond, "We are going to the Baysox game."   

These are just a few of the challenges that we as a family and so many other families are facing in dealing with autism.  There are so many other symptoms and struggles that we deal with on a daily basis.  With so many children being diagnosed with autism it is becoming more difficult for people to not know somebody affected by autism.  Still, so many do not understand or comprehend that a child with autism does not view the world the same as they do, nor are they able to understand that the behavior of an child with autism is a response to the different way they process their surroundings.

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I'm a Lucky Man

Image via WikipediaTomorrow is Valentine's Day.  In a lot of ways, I am a lucky man.  My wife does not like flowers, so I do not have to be concerned about getting her flowers.  She also does not like going out on Valentine's Day because she doesn't like fighting the big crowds that hit the restaurants that day.  So today was our big Valentine's meal.  More on that later.

We are closing in on the end of having our son home for a long weekend.  We are supposed to take him back to school tomorrow sometime between 1-7pm.  He has already said he does not want to go back to school.  Today was going to be the day we were going to try to go out and do some fun things for him.

He had been asking us to take him to Border's Book Store to get an iCarly or Spongebob Squarepants DVD.  We have been reluctant to take him to Border's because we have had some very unpleasant occurances there with him of late.  I mentioned to him the possibility of going to Arundel Mills Mall so we could go to Dave & Buster's to play skee-ball and then go to FYE to buy the DVDs.  That worked for us all.

Let me now backtrack to Valentine's Day and our Valentine's meal.  Earlier in the week, I received a short text message from my wife.  It read simply, "Hooters, Valentines day." (See, I told you I was a lucky man.)  We considered waiting until tomorrow to try to fit all these in, but I figured the more stops we try tomorrow, the more likely we would have potential issues with our son and getting him in the car to head back to school.

Something happened at Hooter's this afternoon with our son that shows the progress he has made and helps confirm that having him there is the right thing for him.  At home, he has been drinking out of a sippee cup and not out of a regular glass.  He is very much a creature of routine, and for him, milk is to be drunk from a sippee cup.  However, at school, he has been drinking water from a cup.  At home he drinks it straight from the tap.

My son did not want any food while we were at Hooters.  At first, he also did not want anything to drink.  However, as my wife and I were eating our meal, he asked for water.  Our server (would it be inappropriate to call her our Hooter Girl) brought him a big cup of water with ice in it.  Usually, when he gets upset, you have to figure out what has set him off.  Today, he immediately said, "I don't like the ice."  He drank about half of a rather large cup of water.

There were three things that were great about our lunch, none of which had anything to do with the food or ambiance of the place.  First, while we were eating he decided that he wanted something after all and was able to ask for it.  Second, when his drink came, rather than having a meltdown about it having ice, he was able to communicate what he didn't like.  Third, he showed us that he could easily handle a rather large cup and drink from it without a straw or lid.

To most folks, these may seem like simple things.  To the father of an autistic child who at times has been incapable of communicating even the slightest desire or dissatisfaction without getting at best, upset, and at worst having a complete meltdown, these are monumental events.  It would not have been out of the ordinary for my son to scream loudly about having ice in the water and then to refuse to drink it.  We take our victories where we can get them, no matter how small they may appear.

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Home for a Long Weekend

Yesterday we picked our son up from school for a scheduled long weekend home.  It had been a little more than three weeks since we had dropped him off.  Originally, he was supposed to be at school for a little more than five weeks, but after week one we had to bring him home due to an ear infection.  After he recovered and went back to school, the three weeks he was there have been the longest he had been away from home.

For the most part, he has done better during the week when he has class.  He has struggled most on the weekends when he has spent most of his time in the dorms.  His weekend struggles have been particularly tough on my wife and I.  So much so that we have almost dreaded calling to check up on him on the weekends.  This past weekend, we got one of the better weekend reports that he had been eating better, interacting with peers, and cooperating in general.

When we picked him up yesterday and spoke to his teacher, she said that as of last Wednesday, my son seemed like a different child.  He had been performing his tasks without resistance and had been eating three meals a day.  Prior to that he would only eat lunch in school and occasionally a little breakfast.  This was a major relief to us because we had been particularly concerned about how little he had been eating, especially on the weekend and evenings.

He was pretty excited to be coming home.  The whole way home he was yapping away a mile a minute.  It was kind of funny because he would go into some of his rote conversations.  We would start to do our role in the conversation, but he had so much to say that he would quickly move from one topic to another.  He has been keeping me pretty busy doing things when I am home from work at night.  I will be burning him at least one or two DVDs over the weekend.

I have had a couple major concerns with him adjusting to living away from home.  A couple of them I have chronicled here previously.  His eating and drinking have been a major concern.  Another was that he would not comprehend or understand us taking him to school.  My fear was that he would think that we were abandoning him.

Yesterday, my wife asked him a question.  I can only hope that he didn't fully understand what she was asking him.  She asked him if he thought that mommy and daddy had forgotten about him.  His answer was "yes."  If he understood her correctly, then another of my biggest fears has been realized.  We have told him without equivocation that we would never forget about him.  My prayer is that he will know we will always love him and be there for us.  

 

A Good Week

It is always hard on me when we take our son back to school.  I always worry about how he is doing and how he is adjusting to this change in his life.  Like a lot of autistic kids, whenever his routine is upset he has a hard time. 

Consequently, when he is away at school, I like to call to check up on his progress.  The people at the school and at the dorm are very patient about my calling on a near daily basis.  I get down whenever I hear that he has been having a difficult time.  Weekends seem to be hardest for him.

On the other hand, it gives us a great deal of comfort when we hear that he is doing well.  We took him back to school on Monday, and this has been a week of good news.  On Tuesday night when I called, he was at a social, which is one of his favorite activities in the evenings at the school.

My father in law, is on the Board of Directors of the school, and he was at a meeting at the school yesterday.  He called my wife to let her know that our son was named "Student of the Week" and would have his picture posted on the wall of the school.  Last night, my wife called the school and he had been well behaved.  He was also at another social dancing the night away.

As I said, the weekends have been the hardest for him.  He still isn't eating a whole lot of the food being offered to him.  In the past, he has also stopped drinking fluids.  The good news is that the dorm worker I spoke with on Wednesday said that he has been drinking more.  Hopefully he will continue to make progress and adjust to school.  At least the week thus far has been encouraging.

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A Tough Day

Monday was an unbelievably draining day.  As I mentioned on Sunday, we were set to take our son back to live at his school on the Eastern Shore.  All day Sunday, he kept telling me, "no school tomorrow, Daddy."  At one point, he said to me, "Daddy has to go to work tomorrow."

His, "Daddy has to go to work tomorrow" comment gave my wife a pretty good idea on how to approach taking him back to school.  She thought it would tip him off if I stayed home from work on a Monday, and that it would be difficult, if not impossible, to get him in the car to head out to school.

So, Monday morning, I headed out to run some errands.  My first stop was to take my car to Jiffy Lube for an oil change.  The next stop was to head to the local shopping center to hang out until my wife was ready to venture out.  She took him for a haircut and then to the mall.  They would go to Barnes & Noble and I would follow them when they went to the car.

It worked like clockwork.  They left Barnes & Noble and headed back to get him in the car, while I walked several feet behind him.  Surprisingly, she was able to get him in the back seat of the car.  He usually sits in front.  With his seat belt on and the child safety locks in place, we headed out to school.

The drive out was fairly uneventful.  There were a few exclamations from him about not wanting to go to school, but for the most part, he sat quietly in the back listening to music.  After we got across the Bay Bridge, he started to protest more loudly that he wanted to go home.  That was intermixed with comments about one of his classmates that he dances with at the school socials.

We got to the school just before 1pm, and that is when the fireworks started.  As soon as we parked the car and opened the door on his side of the car, he wedged himself between the front and back seat on the floor.  This was not one of his run of the mill tantrums.   

As I attempted to coax our son from the car, my wife took his things to his dorm room.  Usually when my son is dropping to the ground, or in this case the floor of the car, that is all he does.  Today there were tears and a look that seemed to be a mix of fear and betrayal.  Needless to say, it tore me up, and tears started to form in my own eyes.

Some of the residential staff came out to try to assist in getting him from the car.  One went back to try to get one of the teachers from his classroom.  One of the teaching assistants came out to try to help.  All told, it took over an hour to get him out of the car, and it took a couple of the male staff to physically remove him from the car.

Once out of the car, he continued to lie on the ground, crying.  It was at this point that his primary teacher showed up.  She was the only person that he responded well to, and he proceeded to stand up and walk into the dorm area with her.  As we pulled away, we saw him walking with his teacher and the aide towards the school building.

We have to go back out to the school next weekend to take him some medications after we get them refilled.  I do not think we are able to go out there for a visit yet.  I think my wife and I have made up our minds to take his portable DVD player out to him so he will have another thing from home to make his transition a little more comfortable.

I am really hoping that he can make it through the next five weeks before his next break.  Having him home for three weeks over Christmas instead of the scheduled 10 days, made today a lot more difficult, at least in my opinion.  So far, he has only been away for two weeks.  These folks are supposed to be the experts in helping these kids to adjust.  As much as I miss him, I really hope they can help him make it through the full five weeks he is to be there.

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The Holidays are Officially Over

Image via WikipediaToday is the official last day of the holiday season.  Tomorrow, the work place will return to normal.  For me, that means no holidays until President's Day in February.  We actually have a choice between Martin Luther King's Birthday or President's Day, but to me, King's Birthday is just too close to the New Year holiday.  After President's Day, the next official holiday that my office has off is Memorial Day in May.  It is just another reason for me to pick President's Day as my flex holiday.

In addition to the work place returning to normal, it is also the day that kids return to school.  For most parents, that is a day of relief, but for me it is a day of dread.  I have documented on this blog some of the challenges that my wife and I have faced in the transition of our son to a residential education program.  The two most recent examples of which can be found here and here. 

Originally, my son was supposed to come home for the Christmas break on December 23rd.  Due to a particularly bad weekend, the head of the program decided to send a few kids home early.  Instead of being home for a 10 day Christmas break, he was home for a full three weeks.  While it was great to have him home, it is just going to make it that much harder to get him to return to school tomorrow morning.  In essence, the whole process has to begin again.

Since the day we brought him home for his early Christmas break, he has been telling us "no school tomorrow."  It is his way of telling us he doesn't want us he doesn't want to go to school.  Part of the problem for him is that he doesn't get to do a lot of the things he likes to do at home.  They requested that we not leave anything of value at the school.  Consequently he doesn't have his computer, DVD player, or video games.  The only thing he has from home is a portable CD player.

He keeps his CD player with him constantly.  It is one of the things that gives him a great deal of pleasure.  When we picked him up three weeks ago, the batteries in his CD player were dead.  We had left a large quantity of batteries with the school for him because we know how much of them he uses.  Unfortunately, the batteries were kept locked up in the residential director's office, and nobody had access to get him fresh batteries.  It made me wonder how long the batteries had been dead and if that contributed to his behavior issues.

I understand the decision to want to keep the batteries in a place where they would be safe.  I do not understand them putting them in a place where nobody else in authority would be able to get them for my son.  I also understand the school not wanting us to leave anything of great value at the school.  We have been very hesitant to let him keep his Nintendo DS or his portable DVD player at school.  Though I do have to wonder if his transition would be easier if he had one or both of those things.

The dorm area seems to be the area where he has the most difficulty.  When in class, the majority of the reports that we get are positive.  They do have some after class activities that he enjoys.  They have weekly socials with music and dancing that he really enjoys.  On the night before he left, they had a karaoke party that he had a great time at.  In fact, he told me he danced with one girl in his class.  He has mentioned her a couple times since he has been home, but he still doesn't seem to like or miss her enough to go back to school.

I am still torn on whether or not we should let him take his DVD player to school.  The dorms have one television that all of the residents use.  Aside from when they put a sporting event on the television, I do not think he ever gets to watch any of the things he likes when he is home.  Things like Wheel of Fortune, Maya & Miguel, and of all things, believe it or not, infomercials.  He has DVDs that I have made for him of all of those things.  Having those to watch in the dorm might help him while he is there, but I would also hate for anything to happen to the DVD player while there.  What would you do?

Back at School

My son has been back at school since last Monday after coming home for a long weekend over Thanksgiving.  On my last update, which I wrote the night before we were to take him home.  I was concerned at the time that it would be a challenge to get him to return back to school.  Let me tell you, it was more than difficult. 

Whenever my son thinks we are taking him someplace he doesn't want to go, he will drop to the ground and refuse to move.  We found out that they were able weigh him at school and that he weighs in at 186lbs.  Needless to say, if he drops to the ground, my wife and I can not move him.

We decide that on the day we were to return him to school, that we would take him someplace he liked to go.  He had been asking to go to IHOP over the Thanksgiving break, so we decided to head out to IHOP that morning.  As soon as he got out the door, he dropped to the ground.  After about half an hour, we finally got him to the car and headed to breakfast.

We finished breakfast, and we headed out the door, he dropped to the floor in the restaurant.  Once we got him out of the restaurant, we had at least three more incident of his dropping to the ground.  Two of them were in the parking lot between two cars.  After several minutes, I walked to a nearby fire station and enlisted the help of some firemen to help get him in the car.

Once we got out to school and went in for the Christmas party.  We had a pretty good time while we were there.  I got to meet a few of the other people at the school who work with our son.  At the party, Santa Claus was there.  My son usually doesn't want to see Santa, but he sat on his lap and told Santa something he wanted for Christmas.  Still, our son wanted to go home, and at one point asked me to stay with him.

I call daily to check on his status.  The good news his first week back was that he was attending school daily, and was eating lunch.  Unfortunately, at the dorms he was not eating dinner.  The weekends for him at school have been the most trying.  Those are the days that he usually doesn't eat anything.  I had almost gotten to the point where I dreaded calling to check on him because I was concerned he wasn't eating.

On Sunday night, I called and he was down at a social.  He loves going to those so he can dance.  The best thing was that they reported that he ate well that day and had an overall excellent day, watching football and decorating the Christmas tree.  Then yesterday, he refused to go to class and spent the day in the dorm.

There have been several good reports, but for every good report there has been some negative.  It is a major adjustment period for him and for us.  On the positive, he is starting to interact more with the other kids in the dorms.  One day I could hear him in the background laughing and playing with the others.  Then the next, he spends it in his room.  Only two more weeks until Christmas break.

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Update on School and My Son

It has been three weeks since I have written an update on my son and school.  There were a lot of things going through my mind that day as we took him to his new school.  I was concerned about how difficult it would be to try to explain to him that we would be leaving him that day and not seeing him for two weeks.  To describe his eating as picky would be a severe understatement, so there were major concerns about him eating while he was out there.

Surprisingly, getting him to the school was much easier than I anticipated.  Saying goodbye wasn't, and I don't think he understood when I told him that I would see him in two weeks for Thanksgiving.  With me being the worrier that I am, I called the school every evening to get an update on how he was doing.  The initial reports that we got that first week were encouraging.  He tried a couple new foods like hash browns and some salad.  His teacher said he was adjusting to the schedule and working well in class.

At the time, I considered writing a post about my adjusting to his being gone.  When he is here, he basically dominates the television.  It is rare that I get to watch what I want on television, when I want to watch it, and without interruption.  Then there is the issue of buying him all the food that we buy special for him.  In addition to the benefit he would get from being at the proper educational facility, there were benefits to me in terms of my personal leisure and savings on the weekly grocery bill.  Still, the bottom line was that I missed him immensely. 

His first weekend at the school was a bit more difficult for him.  He prefers to stay home on the weekends, and watch TV, play video games, and surf the internet.  The school plans a lot of weekend outings and activities, which he shows no interest in.  They do have socials where they play music and have dancing.  He really enjoys and looks forward to those.

When the second week of school started, he had a difficult time getting back into the routine, but had a another good week of classwork.  Towards the end of the week, he started to have a lot more difficulty, especially in the eating department.  By the end of the second weekend, I was extremely worried because he had basically stopped eating and drinking entirely.  It became a concern at school as well, as they had us pick him up a day earlier than the original Tuesday pick up date.

He has been home almost a week now.  As soon as we picked him up, he started drinking again, and he has been eating his usual fare since he has been home.  Tonight, he and I went out to Watkins Regional Park in PG County, MD to see the Winter Festival of Lights.  It has become something of a Thanksgiving weekend tradition for the two of us.  As we were driving home, he looked over at me and said, "No school tomorrow, Daddy."

Tomorrow is the day we are supposed to take him back to school.  They are having a Christmas party.  When we picked him up last week, he talked about coming back to school and going to the party.  However, based on his response coming back from the Festival of Lights, I have a feeling we will have a difficult time tomorrow.  More importantly though, is the eating.  This time, he is not supposed to come home until just before Christmas, almost four full weeks.

I am not sure what will happen over the next four weeks.  The one thing I know for sure, is that it will be another four weeks of worry on my part.  I am not sure what will happen if he stops eating and drinking again.  He obviously needs to drink and eat.  He also needs to adjust to his new situation.  My son, even with his disability, is a bright child.  If he thinks he can continue to manipulate the situation and get to go home by not eating and drinking, he will display those behaviors.  Pray for us.