We Belong

I have officially become one of those moms that I mocked earlier at the start of this blog. I drive a luxury SUV and drive my kids to school wearing my cute tennis clothes. My husband is not in entertainment but, he is a lawyer who works long hours and even though I don't have a paying job outside the home, I have a nanny-housekeeper. After 5 1/2 years of living here, and now that I look and live the part...I finally feel like...we belong! No longer do I feel like an outsider in my own community.

This feeling of belonging was never so evident than with Aidan's recent hospitalizations (yes, that is plural; he had two major hospitalizations in two and a half months). It was a very tough time for our entire family and came completely out of the blue.

The first hospitalization started with a fever, after school one day, and it persisted and developed into a bad cough. He saw the pediatrician. She prescribed antibiotics and we thought he would get better soon. After 2 days, while I was bathing Aidan, I noticed that the site of his baclofen pump appeared unusually puffy and that there was a red patch leading from the pump site to the lumbar region that felt hot to the touch. That made alarms go off in my head. The next day, I took him into the pediatrician's office for an urgent visit and she told us that she feared that his baclofen pump might be infected. She told us to go to UCLA ER. When we got there they started IV antibiotics right away. They took a sample of the fluid from the puffiness and because he had been coughing badly and still feverish, they also swabbed his nose to test for RSV.

While I could go on and on about spending 3 sleepless nights waiting for a hospital bed in the overflowing ER at UCLA, and about our harrowing hospital experience,.. I won't. To make a long story short, Aidan's intrathecal baclofen pump turned out to be infected by staph bacteria. He had to have surgery to remove the pump and get treated with IV antibiotics to completely clear the infection. And if that wasn't bad enough, Aidan also had RSV pneumonia. This definitely complicated his recovery. He spent 2 weeks at UCLA recovering from the surgery and infection. Then he spent about 5 weeks at home feeling miserably uncomfortable. His body was super super stiff and he was completely, a prisoner to his body. To compensate for the absence of the medication he was receiving intrathecally, the doctors had put Aidan on high doses of 3 different medications given by the g-tube, to help relax his extremely contracted body. To put it in perspective, the doctor said that if any one of us were to take just one dose of his medication, we would be asleep for a week! But, since Aidan had been on the medication for so long, his body had gotten used to it and metabolized it really quickly. Also, the delivery method of the medications via g-tube was just not nearly as effective as getting it intrathecally.

So...this extremely difficult time at home led to the second hospitalization, which was also a little unexpected. Aidan's dystonia was getting so bad that it had started to impact his breathing. He would get laryngeal spasms which would cause him to lock his jaw open and his tongue would block his airway making breathing difficult. Because of this, we were urged by our doctors to get Aidan admitted to the hospital so that he could be monitored and be under medical supervision while they worked on getting approval to urgently, re-implant a new intrathecal baclofen pump for him. The surgery got approved and it got done in a few days and it was an amazing transformation! You could immediately see post-surgery, that he was so much more relaxed and comfortable. Hallelujah! We were all so happy and relieved to see Aidan more comfortable and able to smile again.

As one would expect, Aidan's illnesses and hospitalizations caused a lot of stress and trauma to our family. Night after night, around the clock someone would be at Aidan's bedside. And this could not have been possible without the remarkable support of my wonderful husband, who could have easily used the excuse of having to work and run his new law firm. He and I basically did a tag team duty at Aidan's bedside. Several people offered to come by and give us some respite, but when Aidan's condition was very acute and worrisome, I felt it was imperative for either me or Kevin to be there to help guide Aidan's medical care.

When Aidan was initially hospitalized, several of Connor's classmates' moms were concerned and offered to help. One sympathetic mom even organized a meal sign up with the class parents to prepare meals for us and delivered them to our house. Many offered to pickup Connor and take him for playdates so that I wouldn't have to worry about him. It was such an outpour of concern and genuine hospitality that completely touched by heart. Most of them did not even know Aidan directly. I was just so amazed at how much these people were willing to help. And people's concern and kindness was widespread. The school's maintenance lady, who always sweetly greets and talks to Aidan, even made him a quilt. People were so thoughtful and caring.

After a 3 month absence, Aidan returned to school. His classmates were so happy to see him and have him back in the classroom. When I walked him into the classroom the first morning back, we were swarmed by all the kids cheering, "Aidan's back!" A couple of the girls said they had dreams about him and many of them gave him lots of hugs. This show of affection and caring by our community made me truly feel...we belong now.

Dr. Mom

As parents, we feel no worse pain than when our children are sick or hurting. Of course, you do all that you can to help them feel better...but sometimes it doesn't help. I have felt that pain more times than I would ever wish on anybody. Since Aidan was a baby, I have felt that pain come and go, on and off. If it wasn't the stiff body arching back and inconsolable crying, it would be the numerous inexplicable midnight wakings with a groan and grimaced face. When Aidan was a baby, I often attributed some of the inexplicable wakings to teething. Some people would tell me that children often experience real growing pains. Did Aidan experience that? I'm not really sure. But, over the years, I hesitate to admit I have given him quite a bit of over-the-counter pain relief medication (only at night and not more than a few times a week). I am definitely not one to reach for the medicine bottle right away, but what was a little reassuring for me was that often times when I would give him pain relief, it would help him rest. When you've tried singing, rubbing their chest, rocking, and counting sheep, etc. and they still can't get to back to sleep, and you're sleep-deprived, exhausted and frustrated, a little OTC pain relief seems like a reasonable option. As Aidan has grown older we've learned more about his condition and what goes on with his body and what's happening in his brain and it continues to be a learning experience. If you can imagine a huge muscle cramp that emanates throughout your entire body...that's what Aidan's body seems to go through non-stop. You gotta think that it's painful. Later, after numerous tests and seeing doctors, specialists and therapists, we started giving Aidan medication to relax his muscles, and reduce the spasms and contractions which caused him discomfort and often disrupted his sleep. Fortunately, this has helped Aidan be more comfortable and has helped him be more manageable for us, his caregivers.

I used to think that when Aidan got older that his physical issues would stabilize. However, it has not. The issues have just changed. I try to be informed by researching the internet and talking to other families, even getting second and third medical opinions. But, I've come to realize that doctors so often don't think outside the box. It seems as though they have standard things that they prescribe for patients that have certain problems, and they don't seem to think beyond that. It takes my own research and inquiry of the docs to get them to try something different. And its not anything that they hadn't heard of, but they just don't think to suggest it to you. I find that frustrating and a little disturbing. Thank goodness for the wealth of information on the internet!

I often count my blessings when I think and hear about other more severe issues other families deal with with their special needs child. But on the flip side if I think about all the treatments, traditional and alternative therapies Aidan has been through since infancy, I get a little disappointed at the lack of true progress he's made to this point. Countless stories of other kids going through one intensive physical therapy session and they are taking steps and starting to walk...Aidan has done at least half a dozen intensive physical therapy sessions and is still unable to roll over, let alone sit up or walk. But, I always try not to let my mind go there...it can get depressing. I try more to think more about the positive things I can feel good about...that Aidan can travel with us, that he is cognizant, easy-going, good-natured, and has a great sense of humor.

When you're the parent, it's really difficult to make big decisions that are life-altering for your child, not really knowing if the outcome will be good or bad. Especially when these decisions require surgery. For example, the decision to get the feeding tube and the surgery to "fix" reflux (the nissen fundoplacation), and the decision to get the implanted medication pump (the intrathecal baclofen pump) that continually delivers a muscle relaxer. We try to make sense of all the information and expert opinions and trust and pray and hope we make the right decision for Aidan without putting him through too much pain and agony. With Aidan, I fear that we'll face more life-altering decisions in his future. I just hope that they'll be the right ones.

1st Grade...So far, so great!

"Aidan is a seven year old whose birthday is March 24. His muscles don't work well so he has a cool wheelchair that he uses at school. He lives in the Highlands with his family and no pets. His house has an elevator. He loves to watch his favorite team, the Lakers with his Dad. We think Aidan is nice. We like when he smiles and think he is awesome."

Aidan was the first "Star of the Week" of his first grade class. That was the "story" that the kids in class wrote about him after interviewing him. The parent's task was to provide photos of the child at different stages so that the child can tell the class about them and so the class can learn more about the "Star Student." I provided the photos and helped Aidan describe them by recording the narration on his Step-by-Step switch. Ms. T helped Aidan answer the interview questions from the kids. Aidan's teacher, Mrs. L, was good about guiding the children to direct the questions to Aidan, rather than asking questions about him in the third person like he wasn't there. When the kids would ask, "Does he have a brother or sister?" Mrs. L would correct them to ask Aidan, "Do you have a brother or sister?" I thought this was a very thoughtful, sensitive and inclusive gesture by her.

So far, Aidan's first grade teacher has been great...even better than the kinder teachers. Mrs. L is a little older and has taught at the school for a long time, and even though entirely new to this level of special needs inclusiveness; she has been doing a wonderful job. She seems genuinely interested in including him as part of the class, and genuinely interested in educating him and getting to understand his world. We were in Aidan's Inclusion Team Meeting together and she pleasantly surprised me by saying how cool she thought him being in the gait trainer and stander was. I thought she might be annoyed with the space the equipment took up in the class full of 27 kids (every year she's had to deal with the increasing class size due to the budget cuts). But, she also expressed interest in learning about Aidan's Dynavox (his talking computer) and wanted to take an overview class on it. Mrs. L brought up Aidan's class test scores (8/10 and 10/10). She was very impressed, as was I! The inclusion facilitator, Miss L had adapted the test and ran Aidan thru it and he did amazing! I was so impressed and proud! As his mom, I'm a little biased, but I know Aidan is sharp, because I can tell he is so aware of what is going on and follows along and has a great sense of humor, but when outsiders can prove to me that he has academic smarts too, I am just gushing with pride!

Miss L has told me that the children in the class are also amazing with Aidan and have been really good about including him and helping him and enjoying having him be part of the class. When I am around the school and see Aidan and Ms. T, there is usually a cluster of girls around them, fighting to help and push his chair. It's definitely nice too, that Aidan has about 5-6 friends from his kindergarten class that are also in his first grade class. It's also been great too, because Aidan has been invited to several birthday parties now. I think my having Aidan's birthday party did help to break the ice a bit with the other kids and their parents. I took Aidan to a classmate's birthday party and he ended up being the only (non-relative) boy there! The father of the birthday girl told me that she only invited girls and she specifically wanted to invite only one boy...my Aidan?! Aaaww! So sweet! Another example of the sweet kids is this...Aidan was out sick for about 3 days about the third week of school, and when I walked Aidan in to class when he returned the first morning, one of his classmates said, "Aidan you're back! We missed you!" Wow! What good kids, huh?! I was so touched!

It's interesting now that both Aidan and Connor are at the same school. Connor is now attending the Pre-K class at Aidan's school. And sometimes they're classes will pass each other in the halls or courtyard, and apparently, as reported to me by Ms. T, Connor will point out to his classmates and say, "That's my brother, Aidan! Hi Aidan!" and he'll run over and give Aidan a kiss. I am pleased and relieved that Connor maintains a sense of pride when he sees his brother even around his own friends. In the back of my mind, I was a little concerned that he might be a little embarrassed or afraid to speak up about his brother. But, when it comes to Aidan, Connor continues to surprise and please me and... make me proud.

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.