Wednesday, July 29, 2009
I think I should go on vacation more often because it seems I am quite terrible at getting back to life after I return. Since my last post where I was clearly at an all-time low, I have slowly been returning to some semblance of normalcy. To my great fortune, I have had some comments and emails from kind souls trying to help pull me back to the surface. Thank you to everyone for your well wishes. . I must have sounded pretty down. I hate to send out such negative energy and I apologize for that.
It hasn't been easy, but I do feel like I'm moving forward. My first step was to improve my health. That horrible medicine gave me major gastro-distress and migraines that lasted days after taking that one and only pill. Whenever I feel like this, pill or not pill-related, I pay a visit to my acupuncturist because I feel like my chi (energy) is blocked. I used to go to her at least once a week and stopped doing so only because I decided to direct more of my time and limited funds to treating my anxiety-related breathing problems. It's funny that I'm back to her to treat me for my attempts to get better without her.
Sunday, July 26, 2009
These days, I have felt extremely burdened. I feel like things are just holding me down including my health, my actual body weight, things I need to do for my children.... There are so many things to do and yet the summer makes me so lazy and so tired. I wonder if I'm no different from an animal in the park who is only really appreciating his life when he's busily preparing for the cold season.
I actually shouldn't be complaining. I just came back from a beautifully-spent five days in Mexico. My brother had his wedding in a newly built luxury resort an hour away from Cancun. I didn't have to cook or clean. I sat in a poolside bar drinking pina coladas for four days while my children played to their hearts content. I watched my brother get married to a woman to whom I would comfortably give my children if something were to happen to me and Kai. I also watched my son Logan be the best ringbearer in the world! Thank you YouTube!!!! I have nothing to complain about and yet I feel like nothing is going right.
Before I left, I was even more convinced that I needed medication to work on my anxiety. Two days before my flight, I finally took the EEG that my new neurologist told me to take and I was blown away by my own reaction. I don't know the EEG results yet but lying on a table for twenty minutes with my eyes closed and having to lay perfectly still was just too much to bear. I was so uncomfortable that I needed to squeeze my hands so tight so that I could focus on staying still. Why can't I relax? Am I really that anxious? It felt so bad to the point that I have convinced myself that I really am "clinically" anxious.
Thursday, July 23, 2009
After the posting of the Barbara Levine's book review, Married With Special Needs Children: A Couples’ Guide to Keeping Connected, one of the authors, Dr. Laura E. Marshak, (pictured above) graciously chose a winner of our second book giveaway contest. Here are her words:
It truly was really difficult to choose a winner because each contributor highlighted a strategy that is useful in making marriages work which raising children with disabilities and/or illnesses. Judging took a bit longer that I expected because I would initially pick a favorite…write my rationale for choosing it…and then pick a new favorite. This is more a testimony to your fine responses than my indecisiveness (few people call me wishy-washy!). I liked all of the strategies suggested for different reasons. For example, I was taken with the couple who celebrated their marriage each year with an “alone getaway” to remind themselves of why they married each other. I also agreed with the importance of respite time and the need for individual activities. But because I need to pick just one, I will pick the strategies suggested by Lisa.
I thought she made many wonderful points although I will only highlight a few of them. I really liked what she wrote about the importance of being a team and that neither parent’s contributions are more important than the other’s. Another one of my favorite parts of her reply was her comments about putting aside their own issues in order to support and enjoy each other. It reminded me of a quote (we ended our book with) from a couple who have three children with Fragile X syndrome. Comparing a marriage to a boat they wrote, “Don’t hack at your boat in a storm.” Lisa’s response contained this same wisdom.
In addition to taking care of our children, we need to take care of our marriage, ourselves and our partners. Lisa also demonstrated a lovely ability to work creatively within life’s limits. To me this contained some of the wisdom of the Serenity Prayer. She accepted that their lifestyle did not permit date nights and romantic getaways but was active about making life enjoyable. I also really liked her advice about making sure both partners had a little time to restore themselves through rest, hobbies etc. This underscores the fact that everyone’s life in the family matters. Furthermore, a little down time and self-care, makes us better able to be good parents and partners.
Here is Lisa's entry:
My husband and I simply do not have anyone to watch our son for date night, let alone an overnight trip.
At some point when our son regressed and we waded through the emotional fallout of the diagnosis, we both sort of looked at each other and said something like this: "Well, he NEEDS us both. Neither one of us would ever hurt him or give up on him. It will take BOTH of us to go ahead with biomed/recovery protocol. So since neither one of us will ever leave HIM, let's put OUR crap aside and face that we are in this TOGETHER and the three of us pretty much are in it on our own. Family isn't going to help, friends have run for the hills. So if we w/o a doubt, not getting out, stuck with each other, we may as well support each other and make this as pleasant as possible."
More so than romantic couple time, we go to our base of friendship and try to support/help each other survive/stay sane/still have a LIFE. We do a lot of family things and make sure the other has time to nap, read, pursue hobbies, have downtime. That is the only way we can show that we care right now, and what we each need more than anything else.
Thank you Lisa and other readers for pitching in their two cents. Also, I'd like to say thanks to Barb for sharing her insights on this book and to Dr. Marshak for writing a book that speaks to our families. We are very blessed to have such great people on our side.
Picture 1: Laura E. Marshak, PhD, (pictured) told me that she and co-author Fran Pollock Prezant CCC-SLP decided to write this book because couples often make the mistake of feeling it is not possible to meet their children’s many needs and have a fulfilling marriage under stressful circumstances.
Picture 2: Lisa and Steve from Pennsylvannia pictured here with their son Ethan, 6, who is diagnosed with Autism Spectrum Disorder.
Wednesday, July 15, 2009
One of my biggest parenting faults is that I do not prepare my children enough for things to come. It's funny that I do that because I have a fear of the unknown and planning ahead definitely reduces my anxiety. Unfortunately, I frequently fail to remember that my children are no different from me in that respect and thus I forget to meet this very important need. This can result in unwanted behavior ranging from locking their legs around my hips while trembling to a display of hyperactivity that is so bad, I can only describe it as human racquetball.
Soon we will be flying to Mexico for my brother's wedding which will be our one chance of having anything close to a real vacation. I am so excited to go even though there is no vacation from my job as Mom. For me, a few days of no cooking and no dishwashing is a big enough deal to celebrate. Additionally, it will be a trip of "family firsts" in many ways: First airplane ride for Spencer, First family trip for the four of us, First wedding that we attend as a family, First time in Mexico for any of us, First time being a Ringbearer, First time being in a hotel for Spencer, First time going to a place where we'll be going to the beach everyday.... etc.
But "firsts" for my children don't always go so well so I have been trying to find ways to prepare them. My goal is to reduce their anxiety so they can enjoy themselves more. I am especially working on preparing Spencer because he seems to get scared in new environments sometimes (he's the leg-locker). I still don't quite understand what all the unwanted elements are that cause him to tremble with fear. Additionally, I know that he doesn't like sand which is problematic since we'll want to go to the beach everyday.
The boys are also supposed to be ringbearers at the wedding! I looked at my sister-in-law in disbelief when she told me that that was what she wanted. I was grateful but for her sake, I told her that it might not go as well as we want. She still wanted it and so I found a pillow in my house and sewed a ribbon with rings onto it to have the kids practice before we get to Mexico. They seem to do okay but I know for sure that Logan has a hard time performing for a crowd so I'm crossing my fingers.
I want them to have the best vacation ever but I know it won't be so easy. All I can do is prepare them, right? The rest is up to them. In my search to find ways to better prepare them, I have found YouTube to be very helpful.
Type in "kids play sand beach" and BOOM - scores of videos of young children playing and laughing in the beach are available with just a click. They are almost always short and some even have been edited with music which makes the video even more appealing to our little Spencer. What's more crazy is that you can scan the videos in advance and create a playlist so that you have your "lesson plan" all ready to go when they watch. This way, I don't lose their attention to an unexpectedly boring video.
An added plus is that these videos are all videos of typical children doing typical things and that's actually more educational for me. For the ringbearer videos, I saw a few blunders that were refreshing to watch because I'm not able to see typical children's behavior in settings other than the neighborhood playground. Thus, if Logan and Spencer create a mini-disaster down the aisle, I will likely not feel so bad after seeing the blunder videos on YouTube. On the flip-side, these videos are another way that my children are able to learn from typical children which is great since their opportunities to be with them are limited.
Recently, Logan who has been practicing walking slowly with a pillow, saw a video of a ringbearer walking down the aisle in a crowded church. Within seconds of starting the video, he started to speak jibberish and squirm which is something he does when he feels overstimulated or anxious. I could tell that he now understood what his role was and I'm glad he got a chance to feel the tension before the big day. Hopefully, it has helped prepare him for his own walk.
To be sure, YouTube does not replace real-live experiences but I believe it can be effective in helping me to prepare my children for challenging situations when I can't always give them a "walk-through" in advance ie. plane rides. The children in these videos can serve as models but even in a sensory processing perspective, these videos are hard to beat. How else would they hear audio like the sounds of waves crashing and noisy airplane engines? With just one click, we get all those sounds combined with moving visuals and appropriate models- all FOR FREE in my own home! YouTube, you are my new best friend!
Video: For this post, I chose this video of Spencer and I practicing turn-taking because it was short and sweet. However, I found another asset of videos for this family: measuring short-term progress. This video was only taken three months ago but I can see now that his speech has improved because I know that if we did the same exercise today, he would definitely be talking through it. His favorite phrase these days is "My turn!"
Monday, July 13, 2009
Before I got pregnant with Spencer, I used to have these feelings of shakiness and nervousness and I had no idea what they were. I had lived with them on and off for years but there was a period when it was happening to me every single day. I thought it was my coffee so I switched to having decaf with my bagel every morning but sure enough before it was noon, I would feel so sick that the only thing that made me feel better was to eat my lunch.
Luckily, I worked in a hospital and finally thought to ask an endocrinologist about my problem and she told me that it wasn't my coffee making me shaky. It was my bagel. A bagel has 45 grams of carbohydrates which is huge. I obviously was having trouble metabolizing it and so I sought help. My endocrinologist said that I was likely experiencing something called reactive hypoglycemia and that I should cut down or cut out carbs from my diet.
Can you tell a 2nd generation Korean American not to eat rice? A sociologist once told me that compared to other Asian American groups, Korean Americans are more likely to cling their parents' foods. It could be that we are addicted to spice. I don't know. All I knew was that I had tried a low-carb diet before and I failed to lose any weight because I love my dear friend Kimchi (pickled cabbage) and wherever you find Kimchi, you will likely find his partner-for-life, White Rice.
Thursday, July 9, 2009
I had a long chat with a good friend that I hadn't spoken to in a while. As I updated her on my life, I realized that I've been having a tough time trying to phase out of a battle-station mode. I think it's because I am always advocating for my children and anxiously seeking new ways to help them. Unfortunately, the advocacy can be quite tough sometimes but I've been given a little bit of a break in various ways this summer.
I certainly need more breaks but I don't know how to use them. Hartley, a special mom with a special needs child, recently made a comment on a previous blog post saying that we go through such a long grieving process . I think she's right. I have yet to find normalcy in my somewhat abnormal situation. For example, when Logan's preschool sent an invitation to his graduation ceremony, I RSVP'd for only me, not even bothering to tell my husband. He had taken so many vacation days off for doctor's and other special needs-related appointments that I didn't think he should go if he wasn't "needed." How crazy am I? Who thinks like this?
Sunday, July 5, 2009
When I first learned about ADHD, I immediately became very interested because I thought I saw those traits in members of my family. I pretty much believed that it didn't it describe me but I did suspect it just a bit.
However, this journey to find calm is regrettably still going on and so I'm considering everything. Thus, I've been looking at my younger years to see if I had moments of impulsivity, inattentiveness, and hyperactivity that were so bad that it interfered with my progress academically, socially, and emotionally.
When I look back to my childhood, I see a girl who did a good job at hiding her problems. It was easier to do this because I grew up with an older brother who always out shined me in everything. When we were kids, there was never any question that he was smarter, more popular, more talented, and always, always got into so much more trouble than me. Perhaps this might be why I felt like my problems weren't too big because he always had a bigger load. But does that mean, I didn't have any issues including ADHD? Now I'm thinking no especially since I am learning now that ADHD could be a bit different in girls and women.