Thursday, August 28, 2008


I know that we are blessed to have Jenelle, but there are many times I feel doubly blessed because of Jack. Really, we have two very different experiences with our kids; one typical and one with very challenging needs. We get to experience both sides of the coin, and always I worry whether or not Jack realizes how his childhood is so different compared to other typical families.

Jack is 7, and it has been such a fun age. He's gaining confidence and he's so inquisitive. Jack was almost 3 when Jenelle's medical issues became a priority. While at times it hurt to hear him ask, "Why can't she play with me?" there were other times where I was thankful for his innocence. When he was younger, we used to explain that "Jenelle has a broken brain", and that the doctors were trying to fix it. He was satisfied with that explanation, and seems to have gone on about his life almost as if he were an only child at times.

As he is getting older, I've noticed the old "broken brain" excuse is getting tougher to sell. It may have started with our involvement with Challenger Little League earlier this year. I think that experience was his first introduction to the fact that there are other kids like Jenelle. Since Challenger League, he has said some things lately to make me realize that he is finally understanding how Jenelle is so different.

When our dear friend Mollie passed in June, I sat down with Jack and told him what had happened and why Mommy and Daddy were so sad. This was my first attempt at explaining the real world to Jack, without really trying to pass off the "broken brain" excuse. Though he had never met Mollie, he know all about her from our friend Jim (Mollie's Uncle.) He knew she had many surgeries, and he knew she was similar to Jenelle.

Recently, when Jenelle had her abscess tooth, I took Jack with me to Jenelle's doctor's appointment. Jack sat attentively and listened to the doctor and I discuss Jenelle's tooth. On the way out to the car, Jack suddenly asked, "Mommy, will Jenelle need surgery?" Knowing he had just listened to the conversation I replied, "We don't know, but yes, it's a possibility." Then he asked, "Mommy, if Jenelle has surgery, will she die?" My heart stopped a moment, and I realized he was making the connection to our friend Mollie. Mollie died after slipping into a coma during surgery. I reassured him that was not a possibility with Jenelle's tooth.

Sometimes I worry that he is far too experienced for his age. Later that night, we talked about life with Jenelle. I asked Jack if he knew our home was different, and he said yes. He realizes that his younger sister is not like other kids, and he simply said, "Jenelle is different, and she has a broken brain" almost verbatim from what we've always told him. And after repeating that mantra, he looked at me and said, "Mom, when are the doctors going to fix her broken brain?" In the past I always responded that we were working on it and the doctors were trying to help Jenelle. Realizing now that our innocent excuses are too childish for him now, I answered honestly; "Jack, it may never be fixed. Jenelle may always be like she is. A little different from others and always improving." He simply replied, "Oh", and seemed content.

Simple answers about Jenelle aren't easy. As Jack grows up, he deserves to become fully aware of of how she is different, and sometimes those answers need to be truthful. While at times his keen understanding of the special circumstances surrounding life with Jenelle are heart wrenching, at least it is honest. I realize the need now to share more detailed information with him about Jenelle's real issues. While it is a common phrase to apply to special needs kids, it applies to typical ones as well; kids are resilient.

Jack makes me so proud in the ways he loves his sister. He respects her disability, and it doesn't stop him from thinking life is different in any way. In the end, he will be better because of it.

Friday, August 15, 2008

All pooped out! Literally!

Last night, I noticed that Jenelle's mic-key button (the entrance for her g-tube) was leaking. When I checked it, I realized the balloon was broken and we needed to switch it out for a new button. Something I've done many times in the past. As I pulled out the old one and went to replace it with the new one, some fluid came out to distract my view. I tried to feel my way in and felt some pressure as I pushed it in. As soon as it was in, Jenelle immediately started screaming, crying and writhing in pain. Not her normal reaction to changing the mic-key button, which is usually as simple as changing a pair of earrings. Worried that I may have punctured her abdominal wall or stomach, we ran to the ER.

The wait was a bit long, and Jenelle screamed constantly in the waiting area. Definitely not normal for our girl with a high tolerance for pain. I was sorta surprised they didn't take us right away with her screaming alone. Once we got back into a room, a young intern checked it out and thought she was OK. When the Attending came in, Jenelle immediately became quiet. The Attending recognized us from past visits, checked the site and said it looked fine. He started to tell me me what to look for in signs of infection and was about to send us home when Jenelle resumed her screaming. Having remembered her from past visits, he said that was the worst he'd ever seen her in pain, so he was immediately concerned and ordered an x-ray.

As it turns out, Jenelle was severely constipated and my putting pressure on her tummy earlier that evening when I replaced the g-tube added gas to make her pain worse. Two enemas later we were on our way home around 2:00 a.m. (and after watching all of the Olympics for the evening.) Looking back, Jenelle has been on the anti-biotic and Motrin all week for her teeth, and that may have had added to her constipation. I'm relieved it was something simple to fix. Thankfully all is well, and Jenelle is officially all pooped out!

And in case you were wondering, the teething is going OK. Her pain has subsided some and we are using the Motrin with less frequency. Unfortunately, it looks like she is started to get the molar on the other side as it has started to swell. We're using a teething medicine a friend recommended, so hopefully that will cut back on the use of the Motrin, which while also constipating can upset the stomach with extended use.

That is all for now. Thanks for the continued prayers. I'll keep you posted.

Thursday, August 14, 2008

The controversy about "Tropic Thunder"

Well, you may have read in the news about the recent uproar from the disability rights community about the new comedy "Tropic Thunder" starring Ben Stiller and Robert Downey, Jr. The groups are outraged and insulted by Ben Stiller's character playing the role of a mentally handicapped person, and the excessive use of the word "retard". I have not seen the movie, but I have heard a clip on the radio of some of its dialogue using the term "retarded." I didn't really find it to be offensive. Funny yes, offensive not so much. In fact, the dialogue I heard from Robert Downey, Jr.'s character was describing famous roles in Hollywood about the mentally handicapped including Rainman and Forrest Gump. In addition to repeating the word "retarded" in that clip, I also heard the word "autistic", which I think is encouraging that Hollywood is at least trying to use the proper names to associate to mental handicaps, to some extent.

I realize my opinion is in the minority here, and that many in our small special needs community are outraged. That said, name calling hurts. We should always teach our children to respect others. However, in my opinion, I would hate to see that in our effort to criticize a movie for his interpretation, that the end result is that we've placed a larger stigma on the word "retarded." Personally, I find the words "mentally retarded" to be the most useful way to describe Jenelle because she has no underlying diagnosis and she is "mentally retarded." I worry that we are fighting the wrong battle.

Recently I read a fascinating blog post by author Stephanie Klein, who also happens to have a handicapped child. In her post entitled "Is Special Needs a Retarded term?", she says, "I have no doubt, one day, people will refer to the word "disability" as derogatory..." and I couldn't agree more. Like Ms. Klein, I find humor in dire situations. Sometimes that humor comes across as being offensive to others when I say my daughter is retarded. Don't be offended. I am her Mother, and it doesn't offend me. But where do we draw the line? Am I supposed to give up my sense of humor in dealing with such emotional issues because now I am supposed to to set an example for others? I think not, because I am human. For me, laughter even in dire circumstances is an important part of who I am and how I cope with being the mother of a special needs child.

Arguments such as the controversy against the movie "Tropic Thunder" only create a negative stigma associated with the mentally handicapped community and the use of the word "retarded." I absolutely agree, the term used in certain context can be offensive. However, given the context of this movie, which is meant to be a satire, I think using this movie as a platform against derogatory terms against the disabled in general overshoots the real goal.

The bottom line is we need to teach and practice respect for others. Making fun of some one's mental or physical abilities is never acceptable, unless of course that person can also laugh at themselves. Today I watched the wonderful video below that has been circulating the special needs community. The message is clear; the goal is respect. If we focus more on that, then maybe we won't need to protest movies or make a huge deal out of using certain phrases. Isn't this a universal goal we can all agree to strive for?

Thursday, August 07, 2008

Tooth Update!

Wednesday night, the swelling on Jenelle's abscess tooth got worse. Poor thing looked like Marlon Brando in the Godfather. She was also constantly biting down with her teeth making a clicking noise. That concerned me enough to page the dentist. On hearing her symptoms, he told me to get her in Thursday morning rather than wait the weekend. Jenelle was recently on an anti-biotic for an ear infection two weeks ago, so he was concerned that it could be masking her symptoms somewhat.

The dentist got good x-rays (without sedation) and found that the abscess and/or infection was gone. She is definitely getting her 6 year molars, and is very swollen around the area where her new molar is trying to come in. That is because the tooth hasn't broken through the gum yet. Dr. Brostoff said this type of swelling was normal for a child like Jenelle and that it looked like the anti-biotics were doing their job. Unfortunately, because Jenelle doesn't chew, it could take a while to break through and needs to be watched closely (i.e. it is possible she may need more than one round of anti-biotics). The great news is no additional appointments or surgery are needed for now - YAY! Unfortunately, we may have to go through this again 3 more times for the other 3 molars that have yet to surface. Not fun!

Even though I admitted to brushing Jenelle's teeth less frequently, the dentist thought they looked very good and that I was doing a good job given her limitations. This in part because Jenelle doesn't eat candy. He plans to see her every 6 months to make sure all is well. He also said that Jenelle is probably a year away from losing her baby teeth from what he saw on the x-ray. This is good news as well.

Thanks for keeping us in your positive thoughts and prayers. I'll keep you posted.

Tuesday, August 05, 2008

Abscess Tooth!

On Sunday evening, I noticed that Jenelle had what looked to be an abscess tooth in the back behind her right side molar. She had been quite fussy that evening, but never had a fever or any swelling on the outside to indicate there was a problem. By chance I was feeling in her mouth because I thought she was choking on some food. I took her to daycare on Monday and called our Pediatrician, Dr. Patel, to see where to start. I must admit, I haven't been very good about taking care of Jenelle's dental needs. My Uncle the retired dentist will cringe at reading this I'm sure! (Sorry Uncle Jim!) Currently, Jenelle does not have a dentist and was last seen by my dentist over a year ago. I had been hoping to find and get her into a pediatric dentist in our area, but those are hard to find, especially one to cater to her needs and is covered by our insurance.

By the time we saw Dr. Patel yesterday afternoon, she was in a lot of pain and the swelling was definitely visible from the outside. Poor thing cried real tears when we touched her cheek. Without even looking into her mouth, Dr. Patel prescribed Motrin and anti-biotics. He felt we needed a few days for the swelling to go down before she could be seen by a pediatric dentist, which is our next step. Dr. Patel felt she most likely needed to be sedated for the x-ray and exam. Earlier in the day, I inquired for a referral from our local Epilepsy Support Group and was referred to Dr. Brostoff in Orange. Unfortunately, he isn't on our insurance, so I decided to call our insurance to find out where to go from there. Luckily, given Jenelle's seizures and need for sedation, our dental insurance approved a visit to "any licensed pediatric dentist", so with that blessing I made an appointment with Dr. Brostoff for Monday. If she gets worse, we are to go to CHOC's ER in the mean time where Dr. Brostoff is on call this weekend.

Please keep her in your thoughts and prayers that it doesn't get any worse. I've learned that impacted and abscess teeth are very common for children on seizure meds because their gums are often thicker. Dr. Patel feels it may be her 6 year molars coming in.

Poor thing! I promise to keep you posted!

Monday, August 04, 2008

Jenelle gets an award at school!

Last Wednesday was the award/promotion ceremony at Jenelle's school. This was our third such ceremony. They are always emotional, and this year was no exception. These kids have done some amazing things much due to the wonderful dedication of the teachers, aides and staff.

Earlier last month, we found out that our school district wanted to move Jenelle into a new class within the District away from this wonderful program where she has thrived. We fought it and thankfully she will stay put for next year!

Jenelle has had an exceptional year when it comes to her progress. I wasn't sure what her teacher was going to pick when it came to her award this year; walking or eating. I will let you listen to the video below to find out. Her teacher says she went with "her favorite." The award was overshadowed however by one amazing thing... This year instead of being wheeled to the podium, Jenelle walked! I am just tickled pink to see this progress!

Please enjoy this short clip of Jenelle "walking" to the podium to receive her award from the principal. Her teacher is speaking and she is walking with the aide.