"What's Wrong with Him?"

"What's wrong with him?" is a question I often get asked from other children. Since Aidan is my first and only special needs child, I am still feeling my way thru the parenting part of it. It's like on-the-job training; learn as you go. One might think that I would have canned answers to basic questions like this. But honestly, I don't. It often depends on who is asking, and how old they are. Are they asking because they really want to know or just want an explanation of why Aidan looks different?  For children, I've concluded that the easiest most comprehensible response is, "Well, he just can't use his muscles very well."  If there is a further question, "Why, what happened?" I usually say that when he was a baby he got very very sick and just couldn't learn how to walk and talk.  I don't think most children could comprehend the idea of severe jaundice causing a brain injury resulting in Kernicterus.  Heck, for that matter a lot of adults don't even know that. What you see in Aidan is that he has cerebral palsy. Cerebral palsy, as defined by Wikipedia is, "an umbrella term encompassing a group of non-progressive, non-contagious motor conditions that cause physical disability in human development, chiefly in the areas of bodily movement." This is a good definition. Generally, when you say CP, people understand that its a physical muscular impairment.  And, in many cases cerebral palsy does not mean cognitive impairment, which is the case for Aidan, whose cognition is in tact.

I often struggle with how much I should tell someone about Aidan, especially someone that I don't know. Sometimes I feel like if I don't say anything or explain his condition, then I think that I might appear ashamed or bitter, which I absolutely am not. On the other hand, I feel like if I take the chance to explain, it's my chance to rather educate and enlighten the person.  It's sort of my chance to let the person know that Aidan is not anything to be afraid of, and while he looks different and cannot talk, he understands when being spoken to and likes many of the things that typical kids like. Very early on, a wise pediatrician once told me that I was going to be Aidan's biggest advocate in his life. I've come to accept that role wholeheartedly and truly try to live it outward on a daily basis. That is one of the reasons why I write this blog.

Most of the time, I am sure that well-meaning strangers do not intend to be offensive with their remarks.  But, sometimes I can't help but get annoyed or let an innocent comment get under my skin.  Once, when Aidan and I were waiting for a doctor's appointment, an elderly couple had observed Aidan and I waiting.  And I heard the elderly woman comment to her husband how such a shame it was that Aidan was the way he was because he was so handsome; kind of implying that his good looks were being wasted on him because he was disabled.  I wanted to reach over and slap that old woman across the face!  Not only did it offend me but, it just deeply hurt me too.  But, I can't say that I would feel good about decking an old lady.  Needless to say, I did not say anything to that lady, since she wasn't talking directly to me.  But, I know that those types of comments, remarks and probably worse incidences will continue to happen in the future.  I just think that there is an appropriate time and place to educate and be constructive.  It'll continue to be a learn-as-you-go thing.

(When I first read this passage below, I was really struck by how so much of this could be expressed by Aidan, if he were able. So much of these sentiments I could see expressed in his eyes on a daily basis. It serves as a little reminder and reinforcement that even though one may not talk and walk, one still has deep and profound feelings just like any human being.)

I am the Child - Author Unknown

I am the child who cannot talk. You often pity me, I see it in your eyes. You wonder how much I am aware of - I see that as well. I am aware of much - whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world about me. I do not give you rewards as defined by the world's standards - great strides in development that you can credit yourself; I do not give you understanding as you know it.

What I give you is so much more valuable - I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers. I am the child who cannot talk.

I am the child who cannot walk. The world seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. These is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again. I am dependent on you in these ways. My gift to you is to make you more aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness. I am the child who cannot walk.

I am the child who is mentally impaired. I don't learn easily, if you judge me by the world's measuring stick, what I do know is infinite joy in simple things. I am not burdened as you are with the strifes and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity. I am the child who is mentally impaired.

I am the disabled child. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all I teach you hope and faith. I am the disabled child.

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.