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.

Gabe - The Entertainer

Bruno and I took Gabe to the mall tonight to buy another pair of Crocs. (since these are the only shoes he will wear) We buckled Gabe into his stroller and hoped for at least 15 minutes of peaceful shopping before any meltdowns. Gabe (who is usually fairly oblivious to other people at the mall) was actually watching other children as we strolled along and paying close attention to everything they were doing. When we stopped to look for his shoes, he wanted out of his stroller. We complied and let him run free for a few minutes (with me running close behind him). There were two other moms in the same shoe section shopping with their children. Gabe saw them and ran right up to the group. He then began to laugh and spin while looking at each of these people in the eyes. He would do a crazy move and then look to see if they were watching him. Somehow, he managed to dance and spin himself into the middle of this group of about 7 people. Everyone just stood around laughing and watching him. I could tell they were unsure of what to think, but were amused by his antics. Gabe even walked straight up to one of the boys and stood right in front of him and placed his hand on the boy's chest. I explained to them that Gabe had Autism and while his behavior was a little odd, this was really a wonderful moment for his father and I. We looked on as our son, who just two months ago would not acknowledge any of these strangers, was now initiating interactions with them and seeking their approval of his zany behavior. He was soooo happy and his smile and laughter were priceless during this miraculous performance!

The Interview

Today I interviewed a therapist to join our in-home ABA team. Being so new at this process, I was unsure of what it was that I was looking for during the interview. I had no idea what questions to ask or what exact qualities I was looking for in a therapist. I just hoped to find someone with some experience who was kind, loving, and would eventually be able to build a relationship with my son. I never would have expected what happened next!When the doorbell rang, Gabe went with me to answer the door. Before Paulette was even able to walk through the door, Gabe placed a sticker of a truck in her hand. As Paulette and I sat and discussed Gabe and different aspects of therapy, I was shocked to see Gabe initiate interaction after interaction with Paulette. He exchanged the truck sticker with her several more times, placing it on her hand or arm and then removing it. He would run over to her and touch her arm and run off giggling, as if he was teasing her or playing some sort of game. He even walked up to her and placed a kiss on her cheek while she and I were talking. He followed up the initial kiss with at least five more at various times. At one point he looked right in her face and touched her cheek. Each interaction was spontaneous and initiated (unprompted) by Gabe! This has never happened before that I can recall. Seldom has Gabe even acknowledged a stranger that has entered our home. In fact, the ABA consultant that is leading our program visited with us a week ago and Gabe would not even look at her, much less share even one interaction with her. (which is typical behavior on his part) Before leaving, Paulette got down on the floor and played with Gabe. She would take his "blankie" and hide it and he would laugh and snuggle into her lap. He played with her and responded to her the entire time. I just sat in absolute amazement! I think she thought I was completely out of it, but I couldn't get over the way Gabe was responding to this girl he had just met. It was absolutely amazing!!! Whether this was a "window of clarity" not to be repeated, or a true instant bond between Gabe and his new therapist, is yet to be decided. Regardless, this was a step in the right direction and we have learned to cherish each step.

Lunch With Gabe

I attended lunch today at Gabe's school as part of an end of the year tradition at Bradfield. This was such a fun event! When I walked into Gabe's classroom, he was sitting beside another little boy and playing with trains. I was so happy to see him sitting so close to another child and not trying to take his selected toys to another part of the room where he could be left alone. Gabe was surprised to see me and even dropped his beloved trains to approach me with that heart-stopping smile! As we sat together and ate, Gabe could not stop smiling and at times became so excited that he would grin from ear-to-ear while joyfully flapping and shrieking. While we were still sitting at the table, the same little boy that was playing next to Gabe came over to him and began talking to him and making silly sounds and hand motions. Gabe acted as if he knew exactly what was being said to him and laughed appropriately at this little boy. They had several interactions in a row with this precious child making my son laugh. This is one of the only times I have seen Gabe interact with another child. Maybe in their own way, Gabe and his classmate are becoming friends! This thought warms my heart and brings tears to my eyes.

Special Gifts

I have taken a much needed break from frantically searching for the next treatment to try and have given myself permission to stop feeling so guilty all of the time over all of the things we are not doing. Since doing that, I have found myself enjoying and accepting Gabe more now than anytime since our initial concerns about Autism began over a year ago. The greatest part is that Gabe is doing better than ever! He is so happy and his receptive language is skyrocketing. He is even producing a few more attempts at speech - all unprompted and spontaneous. Gabe has been engaging his father and I more and interacting more and maintaining better eye contact. It's crazy to me that the minute I say, "enough - we need to take a break and enjoy each other," he takes off! :)This morning I received more special good-bye kisses and as I was talking to Gabe's teacher, Gabe picked up his backpack and grabbed his teacher's hand and looked up at her to signal that he was ready to go. He is just so aware lately and communicating with us so meaningfully.Last night he crawled into my lap and we rocked and I began to sing him a song. He turned to face me with a smile that lit up the entire room and then planted three kisses in a row on my lips. He then looked right in my eyes and his sweet face lit up again with that that radiant, glowing smile. To borrow a phrase my dad has used in describing the first time he saw his grandson, "It was like looking into the face of God." Each day lately has been full of these meaningful moments, these little reasons to celebrate and give thanks! After such a long spell of heartache, worry, and doubt, our days are suddenly filled with many special gifts. Thanks be to God for "every good and perfect gift is from above!"

Sweet Kisses (Yes, again!)

More kisses! I think this is becoming a routine when I drop Gabe off at school and I couldn't be happier! When I think of all of the rigid routines that children with Autism can become accustomed to, I will joyfully accept this daily "habit." What did I do to deserve such blessings? "Praise be to the God and Father of our Lord Jesus Christ, who has blessed us in the heavenly realms with every spiritual blessing in Christ" (Ephesians 1:3).

Sweet Kisses

I recently sent out an email expressing my joy after receiving my first ever intentional and unprompted kiss from my sweet little boy. Gabriel is three and has Autism, which makes this kiss a special milestone in our family and a miraculous gift from God. Today I received another special kiss when dropping Gabriel off at school. Again, he saw his teachers and knew it was time for his mom to leave. As if in anticipation of the fact that I would soon be leaving, Gabe turned towards me and reached up to kiss me. Gabriel does not yet have the words to express his feelings about his mom leaving, so perhaps his kiss is his way of coping externally with his inner anxiety about the inevitable separation. Whatever sparked this beautiful connection is not what is important to me. I am only concerned with one thing - those precious few seconds when all else fails to seem important and I share a connection with my son that has been long awaited. To God be the glory!