46 Vaccines???

Hep A and Rotovirus have been added to the CDC schedule for 2007 and we are now up to 43 vaccines in the first 18 months of life!!! (If you include the flu shots both prenatal and as an infant, then it is 46!)

Would you want 43 vaccines over the course of the next 18 months? Although, our bodies are fully developed and would most likely not experience the same side effects as our newborn and infant children.

Highs and Lows

The past few weeks have been filled with some challenging moments that have pushed me to search deep inside myself for a certain patience and perseverance that I never realized I possessed. Gabe's symptoms of Autism have been out of control. His frustration level is such that any slight deviation from what he anticipates happening sets him off into a complete meltdown. He screams and cries while falling to the floor, thrashing about. He will sometimes bang his head on the floor and my heart shatters as I watch my only son become so frustrated that he hurts himself. Gabe will create certain "rules" that we are supposed to follow that seem to change minute by minute. At 5AM this morning, no lights could be turned on. This was an easy one for me to figure out and adhere to. There are times when I am unable to decipher the message he is trying to convey and the result is an inevitable meltdown on his part. It's during these desperate attempts to communicate with my son that I silently call out to God and plead with him to give my son the ability to speak.

What keeps me going as I travel along this weary journey are the special blessings I receive in the midst of severe bouts of depression. Just last weekend, Gabe repeated the phrase, "I love you." He has since repeated it several more times and this means the world to me. My heart swells with joy and delight when my precious son spontaneously lavishes me with affection that I have craved for several years. I have waited so long for his little arms to wrap tightly around my neck and give me the best hugs I have ever received. When Gabe wraps his arms around my neck and presses his little cheek next to mine, I am revived and refueled for the dark times that I know lay ahead.

Summer BREAK???

As the summer days have grown unbearably long, life in our home has been operating in what we like to call "survival mode." The weeks that Gabe is out of school can be absolutely grueling! Without the consistency and structure of school, Gabe's symptoms will increase in intensity and frequency. During these difficult times, sleep becomes a precious commodity to be valued. Gabe already struggles with extreme hyperactivity even on his best days and I have lovingly nicknamed him the "Tasmanian Devil on speed" during these seemingly endless summer days. Gabe has a talent for being able to be in several places at once - or at least it feels that way at times. During a typical summer day, I may decide to begin a load of laundry when Gabe is playing contently with his cars. On my way back by the place Gabe was playing just minutes earlier, I immediately notice he is gone! I am instantly visited by that familiar feeling of dread. Oh no! Did I remember to lock the refrigerator? The answer becomes glaringly obvious upon entering the kitchen. The refrigerator door is wide open and an opened carton of eggs is sitting on the counter. Thick streams of goo are spilling over the carton, down the cabinets and landing in a large pool on the kitchen floor. Egg shell remnants are scattered all over the floor and most of the eggs in the carton are cracked, as well. Where is the creator of this messy masterpiece? I call out Gabe's name, although I know he will not respond. Then I hear the sound of running water coming from the back bathroom. Sure enough, there is Gabe splashing and laughing as the sink quickly fills with water. Water has already begun to run down the cabinets and out onto the counter. His clothes are soaked, but he is as happy as can be. I try to look at this as an appropriate transition into getting him into the bath to wash off the raw egg that remains on him. While he plays in the tub, I sop up the water around the sink and make a dash to the kitchen to clean up the egg catastrophe. As I clean, I make quick darts to the bathroom to check on Gabe. In one of my "check-ins" I see more puddles of water, this time coming from the bathtub. Gabe is pouring out water all over the floor and onto clean towels. I dress Gabe and he runs off squealing into the front part of the house. Once again, I sop up the pools of water in the bathroom and then walk into the kitchen area where Gabe is lining up items from the fridge on the table. He obsessively has to have his favorite drinks and other random food items out and lined up on the table. When he is in this mode, it's very difficult to stop him. Removing just one item can send him into a complete meltdown. Another obsession that creates for some messy situations is his need to dump out water bottles and basically anything filled with a liquid. Our floors stay covered in towels as I soak up one spill after another. Our day will continue in this fashion with me always three steps behind him. There have been incidents involving applesauce and matchbox cars, pla-doh, floor cleaner, baby powder, the dog's water bowl, etc... How is he able to be in so many places at once? How does anyone move that fast? I know that I am not the only one counting down the days until Gabe returns to school. He longs for that structure and ability to predict what will come next. Although, I feel like I am the one working myself into complete exhaustion trying to keep up with him, he is working just as hard attempting to cope with his unstructured day. A lot of what he does is an attempt to adapt and also a means of coping with sensory issues. He's not doing these things to misbehave and I have to remind myself of that - often!!!

New Puppy!

We have a new addition to our family! :) After much thought and deliberation, we decided that we wanted a family pet. After researching breeds and looking for the "perfect" fit for our family's special needs, we found sweet little "Romeo" - a male English Bulldog puppy. He joined us in our home on Monday, August 13th. Gabe was with us, of course, when we visited our sweet little guy at the breeder's home and he loved him! He laughed and flapped and squealed with excitement when he was around Romeo (and the other puppies and adult Bulldogs) at the breeder's home. Bruno and I thoughtfully considered this hefty decision. Bruno knows that I get very depressed about not being able to have another child due to the genetic concerns related to Autism. We both agree that this is not something we are prepared to face again. It's difficult knowing that we can probably easily have more children, yet face this enormous obstacle that keeps us afraid to try. Now that I am at home and no longer working, I have the time to devote to training a puppy and would have a companion with me during the days when Gabe is away at school. We are hopeful that Romeo's presence will help spark some fun engagement and interactions with Gabe. We have already seen some very cute interactions between the two and Gabe has made attempts at speech involving Romeo. Gabe tells him, "No!" (I wonder where he heard that???) Gabe also has attempted to say "Romeo" and it comes out, "Yo-Yo!" Adorable! :) I called for Romeo the other day and Gabe attempted to imitate me. We are loving the new addition to the family and hope to have more humorous and special stories to share in the future.

Sleepless Nights

Below is an article I was recently asked to write for the Autism Society of Collin County's newsletter. I guess word of Gabe's "sleepless nights" has gotten around. :)

My son, Gabriel, has had difficulty sleeping since birth – three years ago. I was home on maternity leave when CNN coincidentally ran a series on newborns. When they reported that newborns typically sleep 16 hours or more a day, I was shocked! Gabe was barely sleeping half that including day and night.

As most babies grow and begin to sleep longer, it seemed that Gabe was sleeping less! Was this even possible? There were many days that I arrived to work with less than three hours sleep. Needless to say, I would grow a bit agitated when other mothers complained of their own children’s terrible sleep habits, only to find out that meant that little “Sam” had not gone to bed until 10:00 PM or that little “Jessica” woke up at 2:00 AM and was awake for twenty minutes. If I even had the energy to share my sleepless stories, the other moms would appear shocked and probably thought I was greatly exaggerating. It was not uncommon for Gabe to fall asleep after 11:00 PM only to wake up at 2:00 AM and stay awake for hours.

When Gabe turned two, we had a variety of concerns, other than Gabe’s lack of sleep, and after months of tests and evaluations, he was diagnosed with Autism. Upon learning of Gabe’s special needs, I quit my job to be home with him each day. Although I loved my job, I was relieved. I was growing very uncertain as to how I was going to continue working while suffering from severe sleep deprivation.

Of course, my husband and I tried everything to help Gabe sleep! We followed a sensory diet, strictly enforced the Gluten Free/Casein Free diet for many months, used a weighted blanket, followed a bedtime routine, gave Gabe enzymes and supplements, reduced the amount of sugar and dyes that he was allowed to have, gave Melatonin, and eventually tried more serious medication under the recommendation of his developmental pediatrician. After following many suggestions, Gabe still had a very challenging time falling and staying asleep.

I now sleep with Gabe in an effort to get much-needed sleep. It’s not uncommon for Gabe to wake around 2:00 A.M. and begin laughing and babbling loudly. He may stay in his bed for awhile, rolling around laughing, before popping up wild-eyed and wide awake. There are some nights where Gabe spends hours running around his room, while loudly shrieking. He may stop occasionally to play with his cars or trains, but then quickly returns to running laps. Gabe will eventually attempt to pull me out of bed to go toward the kitchen. I groggily force myself out of bed and practically sleepwalk to the kitchen where a battle usually ensues over what he can have for a snack. Gabe obsesses over various food items which can turn into a battle of wills at 3:00 AM. Sometimes I am able to get Gabe back to sleep by 5:00 AM or so and sometimes he is up for the day. If he falls asleep, it is often very difficult to wake him up for school only a short time later. Gabe has missed days of school when, after such an exhausting night, it was just too painful for either of us to wake up in time.

Following our most recent trip to the neurologist, we began giving both Melatonin and Benadryl every night simultaneously. Since beginning this new “cocktail,” we have had much better success at both getting Gabe to sleep at a decent time and keeping him asleep. With the exception of the occasional 4AM start to his day, Gabe has been able to sleep through the night for several weeks now. It’s amazing how much difference sleep can make. For the first time in a long time, I don’t constantly feel like a zombie. I have enough energy and focus to hold a conversation. However, like everything else that we experience in this journey on the Autism spectrum, we can not predict what tomorrow might bring. For now, we are enjoying our reprieve from sleepless nights.