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!