Included at Summer Camp

This summer I did not have Aidan go to summer school. The summer school option for him is a special ed class, and as in the past, I have chosen to not have him attend. In prior years, I've had Aidan do Intensive Physical Therapy sessions and various other therapies. Now that I have a full-time aide to help me with Aidan at home, I am able to have Aidan do some fun stuff, like summer camps. Our local park was running a summer camp program for "Preschoolers" (3-5 year olds) and "Sixers" (6-year olds). And fortunately, the very open-minded and compassionate Park Director allowed me to register Aidan for the "Sixers" summer camp. I assured the Director that Aidan would be accompanied by his own aide that would assist him in participating in all the activities. The Director pleasantly surprised me with his sensitivity to my outlook for Aidan and openly welcomed Aidan to the camp. It seems that it just takes a non-judgmental, open mind to accept individuals with special needs. And of course, any previous encounter or experience with special needs helps break down barriers, as this Director previously had. The summer before, I had called a few summer camps to see if they would allow Aidan to participate with me as his aide, and they were all resistant. Even one camp for special needs kids wouldn't have us, stating that it was primarily because they did a lot of physical outdoor types of activities and Aidan being in a wheelchair would find it difficult to participate. Boo on all them! I know that Aidan's direct participation in activities is relatively limited, but it's not so much about direct participation that I seek for him, but about giving him the opportunity to be around other typical children, learning the games and things that other children his age do and play and for him to be a part of his community.

So...lucky for me, I was able to get Connor into the Preschoolers camp and Aidan into the Sixers camp, both at the same convenient location. As Jason, Aidan's home aide, reported, the Sixers really did well warming up to him in a relatively short time. However, these last few months Aidan has not quite been his cheerful self due to some nagging teething pain...out with the baby teeth and in come the adult teeth...one..by..one! (Geez, that will take years to get through all the adult teeth?!) Thus, due to the teething pain, Aidan was not always in a chipper mood. But...he sure did enjoy all the old-fashioned kid games played in the gym...Bulldog, Red Rover, Dodge Ball, etc. I think Jason, his aide, got thoroughly worked, reliving his childhood and trying to keep up with these campers. Every day when they came home, Jason looked zapped! While Aidan loved the physical games, it was the arts and crafts that he did not seem to care for. When given the choice, Aidan does not like to sit around idle too much. He always prefers to be out and about and doing stuff. Aidan's camp counselors were great too. Being that this may have been their first time having a kid in a wheelchair part of their camp, they really made an effort to include him and design activities in which he could participate. I could not have asked for better more considerate counselors.

Aidan's next and last camp for this summer is CommuniCamp. Aidan's communications therapist is piloting a camp for non-verbal, special needs kids. This invitation-only camp is designed for these kids to enjoy typical fun summer camp activities, all while incorporating the use of their communication devices. I think it's a brilliant idea! I am excited about it and have high hopes that it goes well.

Traveling

Friends some time ask me how it is to travel with Aidan, and if he travels well. In fact, he travels very well. Other than needing to pack a few more essentials in terms of feeding or medications or gear, traveling with Aidan is not that troublesome. Aidan is a good traveler. We can pop in a DVD on the portable player or put on some music on the iPod for him and he is fine for just about the entire plane ride. In terms of the airplane ride, I don't have to worry too much about Aidan. Connor is the one that causes some concern. Unlike Connor, Aidan doesn't demand to get out of his seat to run up and down the aisle. Also, unlike Connor, Aidan doesn't insist on singing the "Bob the Builder" theme song full-voice, and defiantly singing louder the more we shush him. The one big challenge though is the need for diaper changing space on the airplane. The airplane restrooms are small enough as it is and now that Aidan is bigger, changing him in the restroom is a real challenge. However, on our most recent plane ride back from the Cayman Islands, we all sat in the bulkhead row (the dividing section between Coach and Business/First Class). The bulkhead row has a lot more legroom because there are no seats in front of you, just a section divider. That worked out much better in terms of changing needs for Aidan. Kevin held his upper body while I quickly changed the diaper. That worked out fine, but luckily Aidan only went #1, changing a #2 on the airplane is a lot more tricky...and smelly.

Some might think that traveling with Aidan might slow us down, but in fact, he helps us get fast-tracked. I always accompany Aidan through airport security and since he can't walk through the metal detector because of the wheelchair, we go through the special handicap lane, and that lane hardly ever has a line. We have to wait for a "Male Assist" to pat down Aidan, but we still get out way before the rest of our family members are able to get through their metal detector and x-ray lanes. Fortunately, I have also not had any problems getting his formula feeding pump through security either. It usually is a large bag of Pediasure milk formula, exceedingly over the carry-on liquids limitation, but I've never been questioned about it. And...we also get to pre-board the plane too. But, sometimes getting on the plane can sometimes be tricky. When we travel we don't use his everyday home wheelchair. We use a collapsible stroller-type wheelchair with a special seater insert. That way we can push him up to the airplane and gate check the stroller and remove the chair insert and use that on the plane as a sort of carseat. Boarding the plane is usually a team effort. While grandma and grandpa wrangle Connor, the carseat and the carry-ons, Kevin will remove and carry Aidan in the special seater and I will fold-up the stroller and leave it at the gate. While we love vacationing and traveling with the grandparents, I have to admit that it is extremely helpful to have another couple sets of eyes and hands to wrangle the kids and the luggage, not to mention the fact that they're built-in babysitters.

We've been to domestic and international destinations for our family vacations, and it's become apparent to me how much more welcoming and inclusive international destinations are to us with our special Aidan. When we went to Costa Rica and did some excursions, Aidan was treated just like one of us. He was able to do the canopy zipline tour right along with the rest of us. Connor, at 3 years old was also allowed to do it. Of course, zipline guides rode with each of them. But the Costa Rican guides took it upon themselves to adapt the venture and make it work for both Aidan and Connor. They truly made it an unforgettable experience for both of them. I am positive that that would never have been allowed anywhere in the U.S. I think in the U.S., they are overly concerned about liability and law suits, and always are more cautious and risk-averse. Like when we went to Anaheim's Disneyland, Aidan was only able to ride the 2-3 officially designated handicap-accessible rides. When I requested to hold Aidan on my lap or have him sit on a ride in his own seat insert, Disneyland would not allow it...even on the slow, easy-going rides. I even offered to sign a liability waiver... but they wouldn't budge. Contrary to that, in Grand Cayman at the Dolphin Discovery, they allowed Aidan to get in the water with all of us and he was able to pet and get kissed by a dolphin...and a stingray! Yet, another activity that I don't think Aidan would have been allowed to do in the U.S.

Our semi-annual family vacations are priceless family-bonding experiences that Kevin and I truly treasure. We love going to new places and seeing new things and especially love that we are able to share the experience with our children and see things through their eyes. Besides the fact that we love travel, one of the reasons why we like to do family travel now, while the kids are young is because Aidan is still rather small and more importantly...portable. When necessary, we can still pick him up and carry him. We'd like him to experience and enjoy the world along with us as much as possible. Fortunately, Aidan and Connor both LOVE going on vacations; in fact, just the mention of the word, puts a big smile on Aidan's face and his entire body shakes in excitement. Traveling with Aidan when he is much bigger will be a little more challenging. Thus, Kevin hopes that some day there can be some type of Iron Man-type suit that Aidan could wear so that he could get around easily, and go everywhere we go. But, until then...we just make it work.

Our Story - Part 2

I went back to work after about 4 months' maternity leave and placed Aidan in a daycare right across the street from my office. Given all that happened with Aidan in his first 3 weeks of life, I was constantly worried about him. I would run over to the daycare during my lunch and see how he was. I worked for a large corporation in a demanding brand management job so returning to work was tough. I couldn't really focus. Aidan started therapy through the Regional Center at about 4 months old. The Regional Center is a government-funded organization that helps infants at-risk for developmental delays by providing various therapies. But therapy for an infant is very much about using rattles and puppets, helping them track objects and locate sounds. However, we weren't really certain Aidan was delayed in his development, especially since he was our first child, we did not have any personal point of reference. We were hoping, wishing, and praying that he might have escaped his early post-birth trauma unscathed. It really wasn't until our pediatrician (different from the original birth) pointed out some of Aidan's abnormal eye movements. For Aidan's first several months we did notice that occasionally his eyes would seem to cross and they would sometimes look down uncontrollably. We thought the eye-crossing was relatively normal for babies, which the pediatrician did confirm. However, the eyes "sun-downing" was a little unusual. When Aidan was about 5 months old, she referred us to see a pediatric neuro-ophthalmologist. This neuro-ophthalmologist had a brain MRI done on Aidan and that was when our worst fears became reality. Unfortunately, Aidan did not escape the neonatal hyperbilirubinemia (severe jaundice) unharmed. The MRI showed that he sustained a brain injury caused by the bilirubin crossing the blood brain barrier and affected the basal ganglia, the part of the brain that controls motor function - all bodily movements. This explained the "sun-downing" eyes. The ophthalmologist was the first to officially utter the words "kernicterus" and "cerebral palsy" to us as a diagnosis. Kernicterus describes the brain injury, and cerebral palsy is a very broad term describing his movement disorder. I was at work while I had this telephone conversation with the ophthalmologist about Aidan's MRI findings. It was an extremely tough conversation for me. I had just learned that my new baby had sustained permanent brain damage that would likely lead to a lifetime of challenges for him. A chill came over me like never before.

Through Aidan's first 18 months, we saw nearly every type of specialist out there -- Neurology, Gastroenterology, Neuro-Ophthalmalogy, Endocrinology, Medical Genetics, and a Developmental Pediatrician. As a baby, Aidan had difficulty gaining weight. The pediatrician was perplexed as we tried different formulae, and did a series of hormone tests, and genetics tests. It wasn't until much later that we concluded that his lack of weight gain had to be related to the amount of extra energy his overactive muscles expended for him. Just about every specialist we saw, after hearing our diagnosis and our story they would say, "Kernicterus, huh? That's rather rare nowadays." Yes, it's rare because it is completely preventable (at least in our case, it definitely was) - given proper medical care! And because kernicterus cases are relatively rare, I've found that doctors are unsure of how to help us, since Aidan's brain injury is not like the more common cerebral palsy case caused by oxygen deprivation, for example. I've seeked out the experts in Aidan's condition and had them examine Aidan and learned a few things. In terms of positives vs. negatives, here's how Aidan's condition breaksdown: The Positives - 1) his brain injury is static, it's non-progressive so what's done is done and it won't get worse; 2) his hearing is normal and was unharmed - this, I am thankful for because hearing loss is often one of the more common issues with kernicterus; 3) his cognition is in tact and he does not have seizures. The Negatives - 1) he has severe dystonia, this is irregular, very tight muscle tone and abnormal posturing - some doctors and therapists have even told me that Aidan is the stiffest kid they have seen; 2) he is completely non-verbal, while his receptive language is high, his expressive language is extremely limited (he whines and groans when he doesn't like something and smiles for things he wants) - this is a huge challenge for us caregivers to figure out his needs and wants; 3) because of these issues, he is unable to do anything independently, thus needs constant, round-the-clock care. Once the reality of Aidan's diagnosis set in, we had lots of doctor's and therapy appointments to make. When Aidan was about 9 months old, we decided that I would quit my job to provide Aidan the best care possible. Thus, I chose to trade in my MBA degree and instead use my MOM degree to the full extent possible, and since then, I have never looked back.

Now all that being said, we've tried all kinds of treatments and therapies. Aidan started doing therapies since he was 4 months old. Over the years, we have tried traditional therapies and alternative therapies -- accupressure, and Chinese herbal therapy, hyperbaric oxygen, Feldenkreis movement therapy, The Anat Baniel Method (another movement therapy), Suit Therapy, even a therapy called ABR (Advanced Biomechanical Rehabilitation) for which we traveled to Montreal, Canada. That ABR therapy turned out to be quite hokey. It had to do with restoring the volume mass back into your body by applying towels on the body and applying pressure in a "quasi-static movement." After seeing it in person, it's no wonder that the videos that explained the therapy did not show the actual therapy in action. It only showcased patients' testimonials and their before and after "results." And yet, there are still so many other types of therapies out there we have not yet tried. However, I now consider them with much more caution and suspicion. Quite honestly, Aidan will likely need therapy for the rest of his life. And while progress continues to be small, we've learned to appreciate and celebrate the littlest milestones. We have high hopes in the advancement of scientific research and medical technology that within Aidan's lifetime, something will breakthrough and be the boost that he needs to take leaps forward. I think that something may be stem cell therapy, but right now it's still a ways away from being the solution...but, I believe that solution will come within his lifetime.

Given all that Aidan has been through, he is the most cooperative, resilient and spirited kid I know. He never complains about getting worked out during physical therapy, and he always bounces back from bouts with illnesses with a big cheery smile. I used to dream that my child would win Wimbledon, or graduate from an Ivy League college, and become a doctor or lawyer. But, now my dreams are different...much simpler. I dream that Aidan will one day be able to clearly utter the word, that I so often here Connor say - "Mommy." I dream that Aidan will one day gain the strength and ability to stand up tall and wrap his arms around me and give me a great big bear hug. But for now, I am content with the wonderful kid that he is and every time I look into his eyes and see that beaming smile on his face, I feel blessed.

Our Story - Part 1

Some people that know me, have come to know me as Aidan's mom. The cheerful, hands-on, perpetually-late-to-appointments, multi-tasking mom to the quiet boy in a wheelchair. What most people don't know, is how and what happened to Aidan. Though a little painful to recount, I feel it's worthwhile to share here because I think something can be learned from our experience. It may enlighten and help you understand who we are as people and why we are the way we are.

Resilience. Perseverance. Joyfulness. HOPE.

It was one week in March 2003 that changed my life forever. That remarkable week in March, I took home my beautiful "Baby Boy Leung," who we decided to name, Aidan. Admittedly, he was named after Carrie Bradshaw's nice, sweet boyfriend, "Aidan" from Sex & The City. After a smooth, uneventful pregnancy, Aidan decided to come into this world 3 weeks before his due date. My water broke, actually it was a slow leak...and after about 15 hours of slow-going contractions and labor, Aidan was born. He was 5 lbs 12 oz and had Apgar scores of 9,9. It was a normal vaginal delivery...nothing complicated or remarkable. The pediatrician examined Aidan and noted that he had two bruises on the sides of his head (bilateral cepholahematomas) from coming through the birth canal, a relatively common occurrence. He said they should not be anything to worry about as they should resolve on their own. Doctor said that Aidan looked good and was in good health. He told us to bring Aidan back for a follow-up with him in his clinic in a week's time. We were relieved, happy and excited! We took Aidan home and cautiously worked our way through as nervous, first-time parents.

When Aidan was about 4 days old, I noticed his skintone was a little yellow and I called the pediatrician's office to report it. The pediatricians's office informed me that it was a very typical occurrence, especially at 4 days old, and they advised me to undress him and put him by the sunlight and that the sunlight would help get rid of the yellowness from the baby's skintone. They did not seem too concerned about it so we tried to do as they advised and did not worry about it too much. About a day and a half later, baby Aidan was appearing lethargic, did not want to wake for feedings, and just didn't seem right. I called the pediatrician's office again. It was a very early Saturday morning so I had to page the doctor and the doctor-on-call, not our pediatrician, called me back. I told him that I had noticed the yellowness about Day 4 and I explained to him how Aidan was now not wanting to wake for feedings and seemed very sleepy and tired... then that doctor told us very matter-of-factly...."Take him to the ER." Kevin and I grabbed the diaper bag, hopped in the car and headed to the ER. As we sat in the ER waiting, Aidan was sleeping, undisturbed in his carseat. A million things ran through my head then about what was going on and a huge cloud of worry was coming over me. Finally, when a doctor got to us, I ran down with him everything that had led us to that point. They examined, poked and prodded him. It was difficult to watch as the medical personnel tried to stick a needle and put an IV in such a small little baby. Based on his appearance and what we had reported, they pricked his heel and did a blood test for jaundice to check his bilirubin level. They informed us that his bilirubin level was 41.5, an extreme and dangerously high level. Normally, a bilirubin level of 20 is cause for concern and immediate treatment, but Aidan's tests revealed a level of 41.5! They said they wanted to immediately admit Aidan to the NICU (Neonatal Intensive Care Unit) where they could do more tests and decide the course of treatment. Kevin and I were completely floored. We were terrified, horrified and in complete shock. Suddenly, our blissful few days with our newborn baby came to a screeching halt.

Hours later, when we got up to the NICU, the doctors told us that his bilirubin level was dangerously high and that they would need to bring it down fast. They already had Aidan in an isolette with a bili blanket and under bili lights. However, that was not going to be enough. They said they wanted to bring the bilirubin level down as fast as possible because the bilirubin could permeate the blood brain barrier and cause brain damage. What?!! Really? Jaundice could cause brain damage??!! I had always heard that jaundice wasn't anything to worry about and that it usually goes away on its own?? We read all the parenting books. We took all the parenting classes offered by the hospital...Parenting 101, Breastfeeding, CPR, Lamaze, etc. I had no idea?! Doctors said they wanted to do a blood exchange transfusion, whereby they would take out all of Aidan's blood and give him all new blood. This would be the fastest and most effective way of clearing out the bilirubin. Doctors also said that, while Aidan and I were the same blood type, they couldn't use my blood as it would take too long to get, screen and clear to use. They would have to use blood bank blood. Kevin and I became numb with worry. We consented for treatment and allowed them to help save our boy's life. It had come to that critical point. We were in a daze.

Aidan spent 14 days in the NICU. While in the NICU, Aidan was treated and medicated for a variety of possible illnesses and possible infections and had a battery of tests done...newborn hearing test, MRI, CT-Scan, etc. Though because he was a newborn, it would be difficult to tell from the tests if he had sustained any permanent damage. Only time would tell, as he grows and develops. He was initially fed by a nasal tube straight into the stomach, until he got stronger. Luckily, Aidan was a good drinker. The doctor was impressed that his ability to suck and drink milk from a bottle was very good. When they were getting ready to release him, the NICU doctor said that he would refer our case to the Regional Center and they would follow-up with us. At that time, I didn't know what that meant. All I knew was that I was just glad to be taking home my baby Aidan.

A Joyous 7th Birthday

Despite being a little on the windy side, I couldn't have asked for a better day for Aidan's birthday party. It was sunny and beautiful. The party site, our HOA's clubhouse playground, was perfect too. They've got a big playground with structures, slides, sandbox, and swings and a huge grassy area with picnic tables. I also rented a jumper and hired a glitter tattoo artist- something novel and cool, that the kids ooh and aah about. And for some reason I decided to bake my own cupcakes...about 50 of them, frosted and decorated myself. I stayed up til 1am the night before finishing them off. Secretly, I harbour a certain sense of pride and satisfaction in saying, "I made them!"

Out of the 20 classmates and 2-3 kids from the kinder class next door that were invited, about 80% of the kids showed up!? It was an amazing turnout! And while I did state on the invitation "No Gifts," many still felt compelled to bring something. However, the gifts that were brought were all very appropriate for Aidan to enjoy. Some gifts were balloons, home-made cards, books, DVDs, and flowers. It was truly sweet to see each of the kids arrive and greet and give their birthday wishes and gifts to Aidan.

The glitter tattoo artist was a hit. Every kid at the party got a glitter tattoo of their choice. And all of them seemed to proudly show off their tattoos. The jumper was also a huge hit. I had no idea that these giant inflatable bouncers could provide such immeasurable, tireless entertainment for children?! I've witnessed my own Connor find pure adrenaline-filled joy jumping and sliding and climbing repeatedly over and over and over. If allowed, I think these kids could just spend hours on-end in and out of the jumper. I also put out some foam crowns and tiaras for the kids to decorate. It was quite funny when a few of the boys decorated tiaras for themselves. But at that young age...who cares, right? I don't think the boys even knew the difference. Later, I gathered everyone together for the cupcakes and song. I told the kids, "Let's sing Happy Birthday to Aidan like you did in class!" And in complete unison, all the kids started singing...Aidan's least favorite song..."Happy Birthday to you...Cha-Cha-Cha!" I was so glad to see the kids so gleefully singing to my Aidan, while simultaneously worried that Aidan would start tearfully bawling at this happy occasion. Since Aidan was young, he never liked the "Happy Birthday" song. When we'd be in restaurants and the table next to our's would sing Happy Birthday, he would cringe and tense up and the pouty lower lip would come out and when the song was over, he would start bawling. The song, coupled with the loud cheering and clapping afterwards, just triggers an unhappy, terrified reaction in him. But, luckily at the party, one of his older buddy friends rapped and told jokes in his ear to distract him from the song. Aidan usually does not like to be center of attention, which is the complete opposite of Connor. But, Aidan did quite well on his special day.

After the cupcakes, I got Aidan into the jumper. While I was nearly sinking in the jumper, trying to shield Aidan from all the jumping, romping kids, they all started to chant, "AI-DAN, AI-DAN, AI-DAN!" It was very cute and amusing. Aidan got a kick out of it.

Overall, the party turned out really, really great. I am so glad that I had the party for Aidan. There have been so few occasions in his young life where he has been center of attention for a positive, joyous reason. I'm glad he got that experience. He truly enjoyed himself and loved celebrating his birthday with everyone. Aidan was so happy that when the party was over and the kids started to leave and say Goodbye to him, he got very sad. He's an extremely sensitive, wear-your-heart-on-your-sleeve kind of guy.

I learned several things from having this birthday party for Aidan; 1) His classmates are really appreciating, accepting and liking who Aidan is; 2) If a parent chooses to drop-off their child at your party, they must designate another parent to monitor their child, and also get the parent to leave a cell phone number. One parent decided to leave her child unmonitored at the party and also showed up late to pick him up! And...her child was not the type that should be left unmonitored. Why would any responsible parent drop-off their 6 year old child at a stranger's party at a big, open, uncontrolled playground?!

3) I'm going to have to be the one to break the ice with some of these parents. Some of them seem very nice, but I think they just don't know what to say to me. Maybe because I am a parent of a special needs child, they feel like they would have nothing in common with me? Granted, as the party host, I didn't spend much time chatting with anybody. Nonetheless, I am determined to break the ice...one of these days.