Monthly Archives: January 2012

Have you tried tacos?

SB is a picky eater.  I know, I know, lots of kids are picky eaters.  But kids with autism can take the word “picky” to a whole new level.  Many people over the last 6 years, some parents and some not, have given me this advice: “Oh, just keep offering him healthy foods, and eventually he’ll get hungry and eat.”  This is very bad advice.  When SB was at his worst with his eating, I was warned by several doctors to NEVER “starve out” a child with autism, because they will end up in the hospital.  I have also met several parents with autistic children that had to be put on feeding tubes because they just refused to eat.  Eating issues can be very serious.  For some kids, the issues are sensory.  Maybe they can’t stand to eat crunchy foods, or soft foods.  One of SB’s former therapists worked with a child who would only eat foods that were orange.  I don’t believe SB’s problems were sensory, though.  He ate a variety of tastes, colors, and textures.  I think his problem was an irrational need for sameness and a huge fear of any food that was unknown.

When he was 2, SB would eat exactly 5 things: chicken nuggets (only the oval-shaped frozen ones from Tyson.  No funny shapes, and not even McDonald’s), Goldfish crackers (the original cheddar only – don’t even think about giving him those funny colors or “Flavor-Blasted” anything), applesauce (just plain and yellow), bagels with cream cheese (cinnamon-raisin bagels only, and don’t you dare try to top them with butter), and peanut butter and jelly sandwiches (there are to be no chunks of fruit in that jelly, and the sandwich must be cut into rectangles, NOT triangles.)  Strangely, he didn’t seem to mind eating the bread crusts of his sandwiches like most kids do.  He would drink one thing – milk, and it could not be skim.  You also could not combine any of the items from these foods, such as cream cheese on a piece of sandwich bread, cinnamon in the applesauce, or jelly on a bagel.

I knew that a good Mommy would not let him eat chicken nuggets for dinner forever, so I tried to introduce new things to his plate.  But when I say that he wouldn’t eat new things, I don’t mean that he would sit at the table quietly and not put other foods in his mouth.  If I put something on his plate that was unacceptable, there would be screaming, there would be crying, there would be tantrums, and there would most definitely be food on the floor, and sometimes the walls as well.  For many months we didn’t dream of taking him to a restaurant.  Mealtimes became a terrible ordeal for me, making me feel incredibly stressed, unsuccessful, and hopeless.  I would either give him what he liked and feel bad that his diet was so narrow, or give him something he didn’t want, watch him refuse to eat it, and suffer the tantrums, still feeling bad that his diet was so narrow.  It was pretty much lose-lose.

I tried lots of different things to try to fix this problem.  First, I went online to search for books or articles about picky eaters.  There are hundreds of articles out there about what you should be feeding your kids: fruits and vegetables, whole grains, lean proteins, blah blah blah.  Are there really that many people out there who don’t understand the food pyramid?  Of course I knew what foods he should be eating.  I needed advice on how to get him to put these foods into his mouth.  Anything I came across that was not simply a list of healthy foods was about how to make healthy eating “fun,” such as making happy faces out of your sandwiches using raisins and carrot sticks.  I was pretty darn sure that any raisins I gave to SB were going to end up smashed into the carpet.

The pediatrician suggested that I make an appointment with a nutritionist.  That sounded reasonable, so I went.  What a huge waste of time that was!  She handed me a few printouts from the internet about the food pyramid, which I tucked away, trying not to let her see me roll my eyes.  I attempted to explain to her my dilemma and how difficult and stressful every single mealtime had become.  She asked if SB ate with the rest of the family at the table so that he could model our behavior, because sometimes people feed their toddlers separately and they never get to watch their parents eat.  Yes he does, I told her.  That was her only real piece of advice.  She then started listing foods she thought I should try.  “My son likes waffles.  Oooh, and tacos!  Have you tried tacos?”  That’s when I started to collect my coat and purse.  Clearly, this person did not know how to help me.

Another idea that seemed good at the time but didn’t work at all was Jessica Seinfeld’s cookbook called Deceptively Delicious.  The concept of her cookbook is to hide vegetable purees in your recipes, so that your kids get the nutrients of vegetables without knowing that they are eating them.  I saw her promoting her book on the Oprah Winfrey show, and I was sold.  She had made chicken nuggets with sweet potato puree, macaroni and cheese with butternut squash puree, and brownies with spinach puree, and had a whole classroom of first graders gobbling them up enthusiastically.  So I bought the book, and made the chicken nuggets.  I’m not really sure what made me think SB would actually eat them, since they didn’t look like anything he had ever eaten before.  Maybe it was because of Oprah Winfrey.  Maybe she is some sort of witch, using her supernatural powers to influence people by making crazy ideas seem perfectly reasonable.  (I once insisted that my husband help me paint stripes on the walls of our living room because I saw it done on Oprah’s show.)   I made several of the recipes in that cookbook, and they were all a bust.  Not one bite.

So what finally helped?  SB was in a special ed preschool at the time called PAC, which stands for Preschool Autism Class.  His teacher during the 2008-09 school year (he was now 3 years old) noticed his narrow diet and decided to help us do something about it.  Her approach followed the principles of ABA therapy, which stands for Applied Behavioral Analysis.  (ABA is a scientifically-proven treatment for people with autism.  It breaks down any task into the simplest of steps, and then teaches each of these steps to the child using frequent rewards for success.  If that doesn’t make any sense, think of how Helen Keller’s teachers taught her to communicate – it’s a lot like that.)  She and her classroom aides would take the class to the cafeteria, and buy the school lunch for SB and a few other children.  (SB was not the only child in the class who needed help with this.)  The first thing she would do is put his milk out of his reach.  He could not have free access to that!  Then she would offer him a choice of 2 things, neither of which he liked.  “Would you like a bite of rice or a bite of peaches?”  “MILK!” he would cry.  “You may have some milk after you eat a bite of rice or peaches.  Which will it be?”  After a few struggles, and because she was not his Mommy and so therefore could be emotionally detached about the whole thing, he would eventually choose one of the foods.  He would complain and cry and make faces, but when it finally went into his mouth, he was allowed a few sips of milk.  The entire meal went like this.  Every day.  There was no way that she could sit and enjoy a meal at the same time, but she didn’t have to.  Her lunch break was later.  I watched one day with my mouth hanging open.  How incredibly tedious and frustrating!  But over the course of that school year, with her help and using the same principles, I was slowly able to introduce a few other foods into his diet at home that he had eaten at school with only minimal complaining and tantrums.

One place I have seen this type of approach in print is in the book A Work in Progress by Ron Leaf and John McEachin.  I once heard Dr. Leaf speak about eating habits (and also toilet training) for kids with autism, and I thought he was excellent.  One of the things his approach suggests is that you only introduce new foods that are very similar to the foods your child already eats, and expand his diet very gradually.  He said something during his lecture that made a big impression on me.  Forgive me for paraphrasing, but it went something like this:

I know you all want your kids to eat vegetables.  Vegetables are very healthy.  But if your kid will only eat M&M’s, (Dr. Leaf had worked with a child who did just that) then I am not going to try broccoli as the first new food.  It just won’t work.  If the child will eat nothing but M&M’s, then the first new food I am going to introduce is Reese’s Pieces.

That was the moment I realized that expanding SB’s diet was not going to take weeks or even months.  It was going to take YEARS.

I think the hardest thing about getting SB to eat was that it was such an emotionally charged issue for me.  I had a very difficult time being rational, and I took it so personally when he wouldn’t eat, especially if I had worked hard to cook the meal.  So if you have a child with autism who has eating issues and you decide to tackle the problem, I suggest you don’t do it alone.  Get an ABA therapist or an Occupational Therapist, especially if you think the issues are sensory, to help you come up with a plan of action.

It is now 4 years later, and SB is still picky.  His diet is still narrow, but it is better than it used to be, and gets better each year.  I can’t remember the last time he threw his food onto the floor.  He is now willing to take one bite of just about anything, which I see as huge progress.  He still cries and complains a lot about having to take that bite, and sometimes his brother does, too.  (They still talk about the horror of “June 23 – the day Mommy made us eat couscous!”)  And corn is the only vegetable I can give him in a reasonable-sized portion of without hearing, “But I don’t LIKE ____!”  Oh, and I still wouldn’t dream of allowing my kitchen to be depleted of either chicken nuggets or Goldfish crackers.  But I believe it will continue to get better if we keep working on it.  Patience eventually pays off.

Christmas 2011

Merry Christmas and Happy New Year from the Burts!  We hope that 2011 has been a good year for you and your families.

SB is now 6 and in 1st grade.  We are so proud of him, and of how well he is doing at school!  He is still in a mainstream class with an aide.  He is pulled out of class a little each day for assistance in areas where he has difficulty, mainly reading comprehension.  He continues to flaunt his skills in memory and math, and even gets pulled out of class once a week to work on math with the school’s “Advanced Academics” teacher.   Interacting with other children is still hard, and we are constantly working on the complex world of social skills.  But every time I visit him at school, he is always surrounded by the little girls in his class.  They seem to want to help him and mother him, which is pretty sweet.

As I have mentioned in previous letters, I started worrying about autism and little AB before he was even born.  By the time he turned 2, he was talking and playing so normally that I allowed myself to stop worrying.  We spent 2 years just feeling happy about SB’s progress and AB’s lack of symptoms.  Once AB hit 4 however, we started to worry again.  We switched to a new daycare in the fall, and soon we got reports from daycare that AB seemed to prefer to play alone.  At home, we also started to notice AB enjoying the same repetitive things his brother enjoys.  And although he began to talk at an early age, his language at age 4 was now noticeably less sophisticated than his peers.  So in November we trudged back to the Developmental Pediatrician, this time with AB, and again walked out with an autism diagnosis.

Of course we are sad.  And disappointed.  And worried.  I could probably list adjectives all day.  But strangely, we are not devastated this time, and I think there are a number of different reasons for that.  The first is that I am not pregnant and hormonal this time around.  Also, AB’s condition is considered mild – his place on the spectrum is less severe.  Third, we have seen firsthand how much therapy can help, and we recognize that we do not have to start at “Square 1” this time with basic communication.  And finally, we do not have the fear of the unknown like we did 5 years ago.  We’ve traveled this road before, so we already know what to do, where to go, and who to contact.  But of course, it’s still a little daunting and scary.

Both boys keep busy with their activities.  They take a Tae Kwon Do class that is adapted specifically for kids on the spectrum, and they love it!  They also take swimming lessons, although both are still a little afraid of that big step of putting their head under the water.  They also enjoy the children’s activities at our church.  And SB keeps busy with therapy, which we will soon be adding for AB.  Sometimes I have to remind myself to make time for them to just go to the playground, ride bikes, and just plain PLAY!  We are thankful that although there are social difficulties in both of them, they seem to be best buds, playing together and fighting with each other the way all siblings do.

After 10 years at his previous middle school, Charlie changed jobs this fall and became the Band Director at Sidney Lanier Middle School in Fairfax, VA.  He is very happy with the school and the students, and is enjoying the year a lot.  He is also happy to be receiving invitations to judge and guest conduct bands around Virginia and North Carolina.  I am still a clarinetist in the Air Force Band, some days enjoying the work and other days counting down to retirement.  (5 years 7 months!)  The most exciting thing in my year was that after 30 years of wearing glasses and contacts, I had laser eye surgery and am now free of corrective lenses.  We took a fun family vacation in July to Hershey, PA, a place with an abundance of two of my favorite things, roller coasters and chocolate!

As I sat down to write this year’s letter, I was feeling pretty down about recent events.  I thought of some my past letters and decided to reread them.  And I realized that when I’m feeling overwhelmed about this new challenge I’m facing, what I really need to do is take my own darn advice!   2007 – “There are times in life when you have done everything that you can, and the only thing left to do is wait and pray.”  2008 – “I cannot make either of my children something that they are not.  I need to accept them and love them as they are.”  2009 – “I can only hope that my family will continue to thrive, and that I will learn and grow from all of my experiences, good and bad.”  2010 – “Reflecting back, it feels good to list all of the things SB has accomplished, how much he has changed, and how much Charlie and I have learned.”  Sometimes I need to remind myself to wait and pray, to accept my children for who they are, to remember how far we’ve come.  And sometimes, I just have to remind myself to BREATHE.    The Burts family wishes you a very happy holiday and a happy and healthy 2012.

Christmas 2010

Happy holidays from the Burts family!  There were a lot of big changes for us this year.  SB turned 5 in February and started kindergarten in September.  He was placed in a mainstream classroom with an aide who helps him and one other child.  As you probably remember, SB has been in school since he was 2.   The routine of the school day was not new to him, but he had always been in a Special Ed classroom.  Charlie and I were so nervous about mixing him in with all the other kindergarten kids, but his preschool teachers assured us he was ready.  And he is doing FANTASTICALLY!  At the beginning of the year, Charlie and I kept waiting for the other shoe to drop, for something to go terribly wrong, but it never did.  He’s not a perfect student, of course.  He has been known to escape from Phys. Ed. class and roam the halls.  (How many of us wanted to do that when we were kids?)  He often has difficulty focusing on the assigned task, especially if the classroom gets loud.  But he is reading and doing math as well as, if not better than, his peers.  He is affectionate and sweet, and has charmed the entire school faculty.  He likes to meet new people, and his icebreaker question is always, “When’s your birthday?”  He continues to flaunt his huge capacity for memory by remembering the birthdays of every family member, classmate, teacher and everyone else he meets.  He is quirky, but seems to be an accepted member of his class.  When the class is walking throughout the school, he even has a few girlfriends who fight over who gets to hold his hand!

Just this morning I met the mother of a 3-year-old who only recently entered this world of autism, Special Ed and ABA therapy.  And I realized how amazing and scary it is that I am now the experienced mom.  I am the mentor giving advice.  Four years have passed since SB’s autism diagnosis.  Reflecting back, it feels good to list all of the things he’s accomplished, how much he has changed, and how much Charlie and I have learned.  I am happy to share my experience with new parents, although sometimes I’m not sure I am qualified to be the advisor!

AB turned 3 in April, and in the fall we moved him from a home daycare to a preschool.  I quickly realized I had been spending all of my Mommy-worrying energy on the wrong kid.  While SB thrived in kindergarten, AB had a very difficult transition to preschool.  For 2 months he was very unhappy to be dropped off in the mornings.  His teachers assured me that he was only upset for a minute and then was happy most of the day.  He is just shy, I guess, and it took him a long time to warm up to his new setting and make new friends.  It’s so interesting to me that he is the shy one.  SB is awkward, but is not shy at all!  It’s amazing how different they are.  Thankfully, they enjoy playing with each other.  They fight, of course, and SB sometimes bosses his brother around, but I think they are genuinely good friends and like being together.

A few other 2010 highlights: I am still playing clarinet with the US Air Force Band, and I ran my second half marathon in September, taking about 20 minutes off of my time.  Charlie has been the band director at Carl Sandburg Middle School for 10 years, and has commissioned several band pieces to be composed for his students.  He is also getting lots of offers to guest conduct and judge band festivals throughout Virginia and North Carolina.  In July the whole family took our second vacation to the “Please Touch” Children’s Museum and the “Sesame Place” amusement park in Philadelphia.  Our family has also started attending services at Westwood Baptist Church, and we are enjoying the community and new friends very much.

We hope your Christmas season is filled with fun, family and joy.  And best wishes for a happy and healthy 2011!

Christmas 2009

Merry Christmas from the Burts family!  We hope you and your families had a great 2009.  We have had a busy year, but a good year as well.

SB is now 4 ½, and continues to make astonishing progress in school and in therapy.  At the start of school in September, his teachers decided that he was ready to “graduate” out of the autism preschool class and move into the developmental delay class.  This was great news!   I believe with my whole heart that the Fairfax County Preschool Autism Class (PAC) has been the most instrumental part of SB’s progress, and I will be forever grateful that it was available to him, but we were thrilled to learn that it was time to move on.  In his new preschool class, he spends a lot of time learning to interact and play with peers, which is very challenging to kids with autism.  He continues to amaze us with his memory skills, and he is starting to read and write.  I no longer worry about his language or cognitive development, and am confident that the “academics” of kindergarten will be a breeze for him.  He will most likely be placed in a mainstream kindergarten class with an aide or some other sort of assistance, but his placement won’t be decided until May of 2010.  At home, we have started incorporating play dates in his therapy sessions to try to help him learn how to play with peers.   Although learning new things often takes him a little longer than the average kid, he eventually picks up most things he is taught.   I’m confident that with a little help, he can learn the intricacies of social interactions.  We keep him busy with other activities as well.  He is in his third year of swimming lessons, and he even goes to a Book Club once a month!

I think I was finally able to breathe a sigh of relief when AB turned 2 in April and let myself stop worrying.  He is very verbal, very social, and is not showing any signs of autism.  He is certainly showing signs of brattiness and defiance, but I think these are normal traits of being 2!  We are toilet training as I write this, and I look forward to being finished with that and saying good-bye to diapers.  It has only been in the last month or so that SB and AB have finally discovered each other, and realized that they like playing together – at least sometimes!  It has been really fun for us to watch them enjoy each other.

The kids had a few fun adventures this year.  We spent our third annual Memorial Day at the beach in North Carolina with Charlie’s family.  In April we went to Chicago to visit my family – AB’s first time on a plane!  We took our first real family vacation in July to Philadelphia.  We visited the Please Touch children’s museum and the Sesame Place amusement park.  In November we took the boys to see a live performance of the Wiggles in WDC.  They watch the Wiggles on TV so much that seeing them live was like seeing the Beatles live – but preschool style!

My biggest accomplishment of 2009 was completing a half-marathon in August.  It almost killed me, but I finished.  I ran with a friend who is encouraging me to do more, so it probably won’t be my last.  But no promises!  I am in my 9th year as a clarinetist with the U.S. Air Force Band, and my 13th year in the Air Force.  I can retire in less than 8 years, but am trying not to count the days just yet.

Charlie had 2 major events this year.  The first was his 40th birthday!  But more impressively, he also completed his 2nd marathon, and was very happy with the amount of time he shaved off since his first marathon.  He is in his 17th year as a band director.  Where does the time go?

My last 2 holiday letters have been quite dramatic, possibly annoying, maybe profound, but hopefully touching.  I told Charlie recently that I was struggling to come up with some sort of profound or meaningful lesson to share for this year’s letter.  And he said, “Isn’t that a good thing?”  I guess he’s right.  Although this year was certainly not what I would call an “easy” year, it was definitely less challenging than the previous 3.  I can only hope that my family will continue to thrive, and that I will learn and grow from all of my experiences, good and bad.

We hope your holidays are fantastic, and that 2010 brings you much peace and joy!  Merry Christmas!

Christmas 2008

Merry Christmas from the Burts family!  We hope that 2008 has been a good year for your families.

SB is 3½ and continues to make incredible progress in his preschool program for children with autism and his ABA therapy.  Last spring we were disappointed to learn that SB would be assigned to a different school with a different teacher in the fall.  He was in a great situation with a great teacher, and we were afraid we wouldn’t be so lucky again.  Changes to routine are very difficult for children with autism, so we were also worried that his transition would be bumpy.  Thankfully, SB’s new school and new teacher are also wonderful, and he transitioned much more smoothly than either of us could have imagined.  His language skills are improving every day.  When he gets off of the bus each day, I always ask him what he did in school that day, and for over a year I didn’t get any reply.  But I kept asking.  So I was thrilled when he finally started answering me with things like, “I played on the playground” or “I had music today” or “I ate a fish sandwich.”  We are currently in the middle of toilet training, which has been quite a challenge!  He knows lots of songs, loves to sing, and is pretty darn good at getting the correct pitches.  We still have a lot of things to work on, but he is moving in the right direction.  He is usually sweet and cheerful and is getting more fun all the time.

I have worried more about AB’s development than any mother should, constantly asking myself if every little behavior is normal or not.  I’m surprised I haven’t gone completely crazy!  (Maybe I have and just don’t know it.)  Thankfully, AB is very social and can do all of the things that a 19-month-old should do – talk, wave, point, clap, understand words and how to use toys.  He is usually a happy little guy, but we are already starting to see some “terrible two” tantrums when he doesn’t get his way.  Although annoying, I smile to myself when I realize that these behaviors are normal.  Through all of my worries, “normal” is what I have been hoping for.  Both boys love books, Thomas the Train, and roughhousing play.  Now their interaction is mostly limited to stealing toys from each other, but someday I hope they will be good friends.

Charlie is still the Band Director at Carl Sandburg Middle School, which has the largest middle school band program in Fairfax County with nearly 400 students.  He has rejoined the Virginia Wind Symphony after taking some time off, and that took him to the Virginia Music Educators Association (VMEA) convention in November to perform.  He is now training for his second marathon in March of 2009.

I continue to perform with the US Air Force Band in Washington, DC.  This January I will be marching in the inaugural parade.  I’m not sure who decided an outdoor parade in WDC in January was a good idea!  It will probably be cold and raining or snowing.  But it will be special to be a part of such a historical event.    Watch for me on TV!  Charlie and I had 2 overnight trips this year away from our children, which was great fun.  We spent 1 night in Philadelphia seeing one of Charlie’s favorite bands, The Police.  For our 10th anniversary I took Charlie to Put-In-Bay, Ohio, a small, quirky town on an island in Lake Erie. 

As I mentioned in my 2007 Christmas letter, being a Mom (especially being SB’s Mom!) has taught me to be patient and to wait and pray when things in my life get out of my control.  I think the challenging thing that I learned in 2008 was to accept SB for who he is.  When he was first diagnosed with autism, I couldn’t wait to “fix” him.  I felt that he was somehow “broken,” and that every waking moment of his day he needed to be in therapy or school or I needed to be working with him myself, because he needed fixing.  I think I have relaxed quite a bit, and realized that he is who he is.  It is not my job to change him, but to accept him for the sweet, smart, and interesting person that he is while still helping him to be the best that he can be.  Before I became a parent, I never realized how hard that might be at times.  When I discovered this, I realized that this lesson applies to AB as well.  I cannot make either of my children something that they are not.  I need to accept them and love them as they are. 

Merry Christmas and good wishes for 2009!

Cheating by Posting Old Stuff

I think that some of my best writing over the last 5 years has been in my annual holiday letters.  My holiday letters are not very traditional – then again, neither is my family!  I have really poured my heart out into the letter each year, being frank and candid about what has been going on with our children and how my husband and I feel about it.  So for the next few days, I am going to post my letters, starting today with Christmas 2007:

Merry Christmas from the Burts family!  I’ve never written one of these holiday letters before, but so much has happened here over the last 1½ years that we wanted to share everything that has been going on.  We have had a wonderful 2007, but to really understand how great it’s been, I first need to give you a brief recap of the latter half of 2006.

 In August of 2006 we learned that we were expecting our second child.  Of course we were excited, but at the same time we were becoming more and more concerned about our first child and his development.  At 18 months old, SB still had no communication or language skills at all, neither expressive (speech and gestures) nor receptive (understanding words and following directions.)  He interacted with both of us somewhat, but completely ignored the other children at daycare.  He seemed happiest when he was sitting by himself and doing repetitive tasks, such as opening and closing doors and turning rugs over and over.  And he had developed a persistent rocking habit whenever we put him in his crib to sleep.  After a series of doctors, therapists and specialists, our worst fears were confirmed.  At 20 months old, our son was diagnosed with autism.

Charlie and I felt devastated, lost and scared.  With the cause of autism a mystery, we had no answers to our questions.  How did this happen?  Why did it happen to us?  A lot of you commented to us how cute SB looked in his Christmas card picture last year.  (He did look pretty darn adorable!)  But the picture was taken only weeks after his diagnosis, and what no one could see in that photo was that his parents’ hearts were broken, knowing that his life, and ours, were going to be incredibly difficult from now on.  And we were filled with the uncertainty of not knowing if our child would ever have anything close to a normal life.

Soon after receiving this news, I received another unwelcome diagnosis – gestational diabetes.  I had also developed this condition in my first pregnancy, so it was not a huge surprise.  In my first battle with gestational diabetes, I was able to control the condition with diet alone, and didn’t need any medication or insulin.  Thankfully, it went away after SB was born.  All I could do was hope that this time would be the same, and trudge forward. 

Before we had received any of this news, Charlie and I had decided this would be a good time to have our kitchen remodeled.  Boy, was that horrible timing!  In the middle of this very difficult time for our family, our home was under construction and we had no functioning kitchen at all.  Also during this time, Charlie finished his first marathon.  Although he is not satisfied with his time and would like to do another, we are all proud of him for finishing on his feet!  But his training schedule during this stressful time started to add to the strain our little family was feeling.  If you add in the fact that we lost our sweet and furry kitty cat, Ashley, to kidney failure, 2006 was not a great year for us.  We were kind of glad to see it go.

We began 2007 with some fear and some hope.  As soon as we suspected SB was not developing normally, we began to work once a week with a therapist called an Infant Educator.  Gradually, he began to make some progress in social interaction, eye contact, receptive language, and even learned to say a few words.  But his progress was painfully slow, and we soon realized that he needed more intense help.  Thankfully, we live in Fairfax County,Virginia, which has a public school system with a wide variety of excellent programs for children with special needs, including a preschool program specifically for autistic children aged 2-5.  So at the tender age of 2 years and 2 days, I strapped a backpack on my little boy and put him on a school bus.  SB and I both cried that day.  We also decided to enroll SB in ABA therapy (Applied Behavioral Analysis.)  We worried at first that we might burn him out with both preschool and therapy, but decided to go ahead and take every opportunity to help him.  We were also thankful for the support of our daycare provider.  She met SB during his worst period, when he cried all the time, could not communicate, and wanted to do nothing all day but play on the rocking horse.  We are grateful that she stuck it out with us!

We are thrilled to report that SB’s progress has been truly astounding.  In March, after only 1 month of preschool, Charlie and I happily realized that we had lost count of the number of words SB could say.  By the end of the summer, SB knew all his shapes and colors, could count to 20 and use 2 and 3-word phrases.  He has finally begun to show us parts of his personality, such as a sense of humor, a huge capacity for memory, a sense of direction far better than his mother’s, a stubbornness, and a tendency to get easily frustrated when something is difficult for him.  He is now speaking in sentences occasionally, loves to play cars and be read to, and is FULL of energy.  He can read letters and numbers now, which we think is fantastic.  He still rocks in bed at times, but it has faded considerably.  Our hope for him is that he will be successful in a mainstream classroom when it comes time for kindergarten.  We still have a LOT of things to work on and many challenges ahead, but with the progress that we have seen so far, we think he can do it.

The one thing I have learned that I feel I need to pass on to current and future parents is this:  if you EVER have any concerns about your child’s development, seek help IMMEDIATELY.  Call your pediatrician or your state’s early intervention program, (every state has a program for children from birth through age 3 with developmental issues) but do not wait!  All developmental problems, whether related to autism or something else, are easier to fix the earlier intervention takes place.  We feel very thankful that SB’s condition was diagnosed early, which gives him a better chance for future success.

But enough about SB, already!  AB was born on April 25, 2007.  He weighed 8 lbs. 2 oz. and was 22” long.  (Let me just say that the epidural is mankind’s GREATEST invention.)  He was a needy baby at first, and wanted to be held all the time.  But now he has a happy disposition and was thankfully sleeping through the night around 3 months old.  And with AB’s birth, my diabetes was gone.

What do people with normal lives write about in these letters, anyway?  Let’s see, I’m in my 7th year as a clarinetist with the US Air Force Band in Washington, DC, and Charlie is in his 7th year as Band Director at Carl Sandburg Middle School in Fairfax County.  And both of our jobs are going well.  But we have decided that we need to be at home more, at least for now.  So I decided to quit teaching private clarinet lessons and Charlie stopped performing with the Fairfax Wind Symphony.  Maybe we’ll pick these things back up in the future, when things are a little less crazy at home.  Besides, at home I now have this great new kitchen to cook in with tons of cabinet space and nifty granite countertops!

Because I am a Mommy and worrying is what we do best, I worry often about AB and whether or not he will have autism as well.  So far, he is developing normally, but he is only 7 months old.  We didn’t have any worries about SB at this age.  So of course, we will be watching like hawks for each and every developmental milestone.  And waiting.  And praying.

And that touches on the most difficult lesson I’ve EVER had to learn.  I have always been a proactive, goal-oriented, go-getting type of person.  Whenever I really wanted something, I simply figured out the steps I needed to take to get it.  If I ever had a problem in my life, I’ve said, “OK.  What can I do to fix this?”  It has been so challenging for me to accept that there are times in life when you have done everything that you can, and the only thing left to do is wait and pray.  Sometimes the course of your life is out of your control, and you simply have to trust that things will work out for the best on their own, because there is nothing left that you can do.  Patience is hard for me, but I am learning to wait and pray.

The Burts family hopes that you and your families had a wonderful 2007 as well, and that 2008 will bring you much health, happiness and joy.  Happy Holidays!

Joining the 21st Century and Starting a Blog

I may be a little late to the game, but I am starting a blog.  My name is Mindy, and I am a clarinetist with the United States Air Force Band in Washington, D.C.  I live in Springfield, Virginia with my husband Charlie and our 2 little boys, ages 6 and 4, who are both on the autism spectrum.  And autism is primarily what my blog will be about, because autism is definitely the biggest thing in my life.  I wish that it weren’t, but it is.

Here is a quick history for my first post.  My oldest, I’ll call him SB, was diagnosed in 2006 at 20 months.  He had no language at all, lots of repetitive behaviors, was very delayed in all areas of development, and was very withdrawn.  His developmental pediatrician told us that he may be mentally retarded, may never speak, may never read, and will probably never have friends.  I was pregnant at the time, and she also told me that my unborn child probably had autism as well.  Yeah, that was not a good time in my life!  With years of intense ABA therapy and an outstanding special ed preschool, SB has made tons of progress.  He is now in first grade in a mainstream class with an aide.  He talks CONSTANTLY, is very gifted in math, and is very sweet.  We are continually working on appropriate classroom behaviors, reading comprehension, and social skills, but are so proud of how far he’s come.

So we watched our second child, I’ll call him AB, like a hawk as he developed and grew.  At age 2, and even at age 3, everything seemed to be right on track, and we were relieved.  But at age 4 we started to notice that he prefered to play alone at day care, he seemed to enjoy the weird and repetitive games that his brother played, and his language seemed to be less sophisticated than his peers.  So in November of 2011, he got his own autism diagnosis.  His condition is considerably milder than his brother’s, and with therapy, we are confident that he will make tremendous progress as well.

The second diagnosis is still new and raw, but it is not as devastating as it was the first time.  We are experienced now.  We know what to do and where to go.  And I’m not sure if I’m starting a blog to help other parents of children with autism or to help myself.  Probably both.