Friday, February 27, 2009
This week was unusual for me. We did a lot. I visited a private school for Logan on Thursday. I was lucky to have my neuropsychological evaluator come with me to the school. She needed to see the school anyway but it was great to get her input as we were touring the school.
Kai was home and sat in on the team meeting that the therapists have once a month to talk about Spencer. I was happy that Kai got a chance to see how much work goes into ABA therapy and the collaboration that goes on between the therapists. I was also happy that he would have to listen to their recommendations directly instead of me telling him what they said. I think he usually half-tunes me out when I do that, but I have no proof. Grrrr
Back to the school visit: It was wonderful. What's more, the people were very kind. I have noticed that in a lot of people working in special education programs and schools. I once visited a public school in Queens. All the staff members of this school were offering their help to everyone who visited, even if they didn't plan to go to that school. One parent coordinator said that if other parent coordinators of other schools don't help them (the parents), then to call her and that she would speak to them. It was amazing. Here are these people, likely underpaid and overworked offering help to people for which they will never receive credit.
It doesn't stop there. After the school visit on Thursday, I took Logan out of school early to take him to a place called the Queens Center for Progress. They do lots of things there for the developmentally disabled and I was referred to them from an agency that was trying to get me to qualify for services such as "family reimbursement," to help with all the bills we have to pay. The Queens Center for Progress was just supposed to give Logan a test and then they'd send the results to see if we were eligible. I brought my neuropsych results and showed it to them.
Once the psychologist, Andrew Chase saw the results, he immediately grew puzzled and sort of looked at me like "Why are you here?"
As it turns out, I should have never been referred for testing because Logan's IQ was too high and he would have never qualified for anything. So it was a complete waste of my afternoon, but I wasn't mad and normally, I would have been really annoyed. However, the psychologist, Mr. Chase handled Logan's case really respectfully and carefully. He even called his supervisor, Dr. Brower, to consult with him further and then they called the person who sent me to this clinic. At the end, the results were that I didn't need to be there and there was no chance in hell Logan was going to see any money from the government for his disability. The afternoon was a complete waste of time and my husband had even taken the day off so that I could get Logan to take this test but still I wasn't mad because Mr. Chase and Dr. Brower were so kind to me. Sometimes nice people can make you feel so at peace. I hope I can have that effect on people some day.
As we walked out of the organization, which was a huge building, we saw lots of people with much more severe disabilities than Logan. I just thought, gosh, this building must be full of the nicest people trying to help those who can't help themselves and while my child needs help, at least he has me and on most days I can manage. I just wish we had a little bit more funds to increase the quality of our life but I guess we're not the only ones who feel that way. Anyway, if you meet a kind soul like Mr. Chase or Dr. Brower, don't forget to tell them how much you appreciate them. We, especially, our children, need more people like them in this world.
(Pictured: Logan and Spencer love to hang out by the window. Even though Logan doesn't qualify for these services, we are still awaiting for Spencer's results. Hopefully, some good luck will come our way.)
Tuesday, February 24, 2009
I have a new project that I hope will help us with our challenges- this time, the topic is marriage.
Today's post is not about what I say, it's about what you say. We all want to know how you deal with the challenges of being married when you have children with special needs. We want to hear all your stories, good, bad, and even ugly. Tell us what worked for you and what you advise others not to do.
It could be anything from "My husband and I make sure we say five things that we appreciate about each other every day" to "My husband cheated on me but that propelled us to save our family." Your contribution could even be about when you knew it was time to split up. All of these experiences matter and can help us.
This post will go straight into a section called, "What Works For You: Readers Give Advice," located on the right of this blog. So please don't hold back, be anonymous or not, it's up to you. From your comments, I'd like to highlight a couple and create it as its own post on this blog. These contributors would also receive a free copy of Married with Special-Needs Children: A Couples' Guide to Keeping Connected written by Laura E. Marshak Ph.D. and Fran Pollock Prezant M.Ed. CCC-SLP, courtesy of the author. Here are some reviews.
Here are some links that might interest you about marriage and special needs children:
1. Oprah Talks About Autism Divorce Rate
2. The Wall Street Journal Discusses Special Needs Possibly Causing Strain in Marriage
3. Divorce Twice More Likely When Your Child has ADHD
4. A Mother Refutes the Autism Divorce Rate on Autism Vox
5. Lisa Jo Rudy, Autism Blogger Questions if Autism Increases Divorce Rate
(Pictured: Kai and I got married at the United Nations Chapel seven years ago. It is a beautiful place but just don't get married when the General Assembly is in session. We had to have a police escort just to drive three blocks to the chapel. It was a real pain. Second photo: the cover of the book courtesy of Woodbine House)
p.s. if you would like to be anonymous but be eligible for winning the book, you must email me the contents of your comments at the exact same time you comment on the blog. You will obviously have to reveal yourself to me but your anonymity will be protected.
p.p.s. if you write a comment and don't want to leave your email address in your comment or find it hard to show how to be contacted, just keep checking this post from time to time. I'll look for you to tell you that you are one of the winners of the book.
p.p.p.s winners will be chosen by March 3 Tuesday 11:59 pm, so pls submit your advice before then if you would like to be considered. Thanks to all who contributed!
When I tell people about this blog. They say, "Good for you. It must be so therapeutic."
They talk about it as if I'm writing a journal and writing a journal is therapeutic but in a journal, I don't leave spaces for comments, add and crop pictures, and don't check my grammar and style. With a journal, I certainly wouldn't be looking at my site meter to see that the visitors of the blog come from all different countries and that the topics of marriage, feeding, and recipes seem to be the most interesting to them. Most importantly, in a journal, I don't get feedback and emails - if anything, that is therapeutic because it makes me feel connected to people.
This blog is hard work and I absolutely love it. This is why I stay up when I'm not supposed to because less sleep exacerbates my anxiety. But I can't help it. I need to work.
When I was working, I loved it. I didn't work too late because I had Logan at home and those of you who work-out-the-home probably understand this. If you are away from your child, you make every second count. After I had Logan, I minimized the chatting, I concentrated on my moving up the ladder and making more money, went on job interviews (without my employer knowing), and I really hunkered down and got very aggressive at my job. I even got promoted!
I got a lot less shy about my accomplishments too. I posted up every successful story I pitched and put it up on my wall. A lot of PR people do that. I didn't care if people thought I was showing off. In the career-advancement books, they would call it "self-promotion."
By the time Spencer was born, the first person I called was my office to tell them to please put the "I am on maternity leave" message on my Outlook Automatic Email Reply. And of course, I had everything laid open and self-explanatory on my desk so people could take over right away.
I really miss working. I think that is why I drive myself crazy with my kids. I take on their care and education like it's my PR job. I have my to-do lists, contacts to call, follow-up calls, scheduling, brain-picking, networking, and researching.... lots of researching. I think the one big difference between "work" and this type of "work/parenting" is how personal it is. I think that is why I ended up in the ER. If I was worried about a project at work, I wouldn't have had a panic attack, I would just be really stressed out but forget about it by the time I came home.
I hope I go back to work someday but it won't be until I get these boys in a school and in an afterschool setting that is really going to work for them. But Spencer is only two so it'll be a while before I go back. Maybe I could find something part-time, who knows.... Wish us luck.
(pictured: Here I am on the day I gave birth to Spencer. After the epidural, I was able to think about the work that I had on my desk and couldn't wait until the morning so that I could my call coworkers to let them know that I wouldn't be coming in. Like many moms, I started my maternity leave on the day I gave birth so that I could use every day of my mat. leave to be with my kids.)
Sunday, February 22, 2009
In my new quest to be a more social family, we accepted an invitation to a 2-year-old's birthday party in my neighborhood. Whenever I get an invite, especially from a non-special needs family, my immediate reaction is to decline. There isn't much declining going on anyway. Logan does not get a lot of birthday party invitations. I think it's partially due to his behavior and partially due to him going to school away from our neighborhood so he doesn't know the kids in this neighborhood that well. However, since Spencer is younger and he's not really "friends" with any of these kids, Spencer seems to get more party invites. Anyway, we decided to go and try to be normal and have fun.
We actually had tons of fun and even felt relaxed! I watched Logan play with the birthday boy's Geotrax for a long time. He was having a great time. Spencer as usual, was very clingy but after thirty minutes, he finally let go and wandered around a bit to play with the toys. I wonder if this is an improvement because of his vitamins or ABA or just maturity. I'll never know. This always drives me crazy.
It was then time to eat and all the kids were eating the "real" pizza and eating the beautiful cake that the parents had brought to the party. I am so out of it. Did you know that they make cakes from cupcakes? They line up the cupcakes and then put some kind of whipped cream frosting on top to connect all the cupcakes into one cake. How convenient and cute!
My poor kids. They couldn't have any of that, but Logan understood. Spencer doesn't eat GF pizza and we brought him something else to eat. I had baked GF pizza for Logan in the morning so that he wouldn't feel left out. I actually think Logan expects it now. He also expects a GFCF cake for him if there is going to be a cake at the function. I have a spoiled GFCFer. Logan ate tons of pizza and Spencer ate up his cupcake and Terra Stix very nicely. The birthday boy tried to take some Terra Stix from his hand and Spencer yelled at him "SHARE!" Oh well, he's getting closer to the meaning.
Anyway, the gluten free pizza steered the parents' conversation to the area of special needs. One mother believed that her child had sensory processing disorder and was having her evaluated. I said "automatic toilet?" and she just looked at me like "So you know!" Of course then, I told her whatever I knew to help her get the most services to which she was entitled. She didn't even ask me for the extra info. I just started blabbing away like I usually do. I wonder if I ever annoy people like that or if they really want to hear the information.
She also told me about a friend who had a baby whose throat swelled up from eating barley and now is freaking out about what to feed her. I told her to tell her friend to call me. Another friend at the party just had her child evaluated for all sorts of areas and luckily will only need speech therapy but is still worried because he lines up toys. I wish that child would qualify for ABA somehow. ABA was the express train to getting Spencer to talk. Another person at the party worked with special needs children and was trained in ABA.
Anyway, what the F is going on? Here I am on this blog saying how lonely I am being a special needs parent and I go to a typical child's party and I'm surrounded by special needs parents and people who work with special needs children! (She gave me some good advice btw.) When I worked with an adult ADHD expert, his reasoning for all these late diagnoses of today's adults was that we just didn't know about it back then. However, I really question this theory now since the autism rate has grown astronomically recently. Could something similar be said for ADHD? Maybe people might have had it generations ago but maybe the symptoms weren't as bad as they are now and maybe there are more cases of it now.
I am convinced that my brother has ADHD and I asked my mother what he was like when he was Logan's age and she said he may have pulled a few pigtails in nursery school but he was never like Logan.
I don't know if it's the vaccines, the water, the chemicals in our floor cleaner, or our toothpaste but clearly something is wrong. We've done as much as we can afford to keep our house chemical-free but if we knew more, maybe all of our kids could have an easier time growing up.
Pictured: Logan at at party a couple of months ago at a place called the Birthday Zone. It was an over-stimulation nightmare: very loud music, a jungle gym, and no structure. Surprisingly, Logan did okay but Spencer was so upset, I had to hold him for an entire hour until he couldn't take it anymore and we had to leave.
Tuesday, February 17, 2009
Yesterday, was President's Day and Kai had the day off. He told me that he had the day off just this past Friday! For weeks, I had asked him repeatedly if he was supposed to work that day and he kept saying yes and made a face like "leave me alone." So when he told me he was going to be home I yelled at him because I had an appointment scheduled for Logan that day and had already hired a babysitter for Spencer. I respect my babysitter and don't like canceling on her at the last minute. What if she turned down a job because she had us scheduled?
Sometimes I think Kai has ADD. He is the worst at scheduling. Until he got a cell phone, he never knew what time it was because he refused to wear a watch which I now suspect is a sensory issue. His older sisters remind him of all the family holidays and events. Sometimes we are expected to show up at a family event even though they give us just one or two days notice because they are so used to working with him this way. He's the baby of the family. I absolutely hate it. I like to plan things and I am like Logan - I always want to know what is next.
Anyway, I canceled the babysitter and had Kai take Logan to the DAN! doctor for his second round of food allergy tests while I stayed home and finally finished putting up the new quarter charts while Spencer received therapy. I'll write about those allergy results soon. It was definitely interesting.
Anyway, that was yesterday and today, Kai went off to work and thus started the real "vacation" where I am home with BOTH kids alone.
Compared to the last vacation, it was much easier because Spencer now has ABA and then speech therapy so he was occupied for about two hours. You would think I would use this time to do some one-on-one time with Logan but nooooooo. What do I have to do?
I have to proofread his application to yet another private special ed school and call the school to see if I can hold off a couple of days to send the app since the admissions people are possibly out on break. I wanted to hold it off because there was an "essay" portion in the application and I wanted his school psychologist and neuropsych evaluator to read it first before I sent it. (Pictured above: I am including this picture in the application. My evaluator actually suggested I send a photo. I hope this one is okay. Does it say, "How can you say no to this face"?)
I was pretty much on the phone all day long. I think I spoke with my soon-to-be lawyer's office about five times. I called my babysitter twice. I had two therapists call me about today's schedule for Spencer. I got a call from the agency where I applied for "family reimbursement" for Spencer to tell me that I was denied "locally" but now it would go to a "second round," and then to a "third level," where a final decision would be made and then I could appeal if I was rejected. HUH???
I got three calls from another agency that was going to give Logan a free psychological test so that he could possibly qualify for government services like the "family reimbursement" I was trying to get for Spencer. They had actually thought I was coming tomorrow but I had the test scheduled for Thursday when Kai had purposely taken the day off so that we could do these things. This only resulted in more phone calls to everyone and me really trying to calm down. So I ran to my computer and wrote a list of things that I was thankful for today (my gratitude exercise) while I awaited to hear from the agency about my appointment. I wanted only positive energy around me.
In the end, it all worked out and the only loss is that I'll miss having coffee with a new friend. It's a big loss to me because I planned it two weeks in advance and I was really looking forward to it but it will have to happen another day.
I also was at my computer all morning because I had to send the lawyer all of Logan's paperwork and I had new reports that I hadn't yet saved into a pdf file and for some reason my pdf writer wasn't working well so I was attached to my computer when I wasn't attached to my phone.
Result: Logan did not have a single moment with Mommy alone despite Spencer being occupied by therapists for two hours.
This is not why I quit my job and put my career on hold. I am supposed to stay home and use the time to provide more care for my son but all I do is spend time on the phone talking to doctors, lawyers, social workers, and health insurance companies!!!!! Imagine if I did have a job. They would have let me go so fast. I salute all working(out-of-the-home) mothers who have special needs children. Please tell us how you manage to not get fired.
I told Logan that when Spencer fell asleep, I would do Mommy-and-Logan time with him. I was really going to do it. I took Spencer and Logan out after Spencer's therapy. I got Logan's scooter out and we strolled and scooted up and down a long block so Spencer could fall asleep in the stroller. Spencer has a cold right now so sleeping more upright is better for him.
Spencer only slept for about 20 minutes after we came back upstairs. He usually wakes up crying if he sleeps less than the usual 1 1/2 to 2 hours but he woke up happy, sitting there, talking to himself, possibly congratulating himself for ruining Mommy-and-Logan time. Poor Logan.
This was my first day of "vacation." I am exhausted. Did you have a day like mine? I sincerely hope not. (Pictured at right: One good thing about today is that Logan showed me he was able to play by himself for a good sum of time. He earned a lot of quarters on our new quarter chart and he even asked me to take a picture of him when I commented that he was playing nicely and quietly -he's gotten hooked on this behavior tactic of mine- instead of saying, "Good Job" I just snap a photo to show my praise. He loves it.)
Monday, February 16, 2009
I need your help again. I was reading ADDitude Magazine's Kay Marner's Parenting Blog where she discussed losing her respite services from the state of Iowa. It sounded terrible especially since she said she really used that time to spend with her non-ADHD son. I lived under the shadow of my older brother when I was a child. In our immigrant Korean family, he was the first-born son and only son of the first-born son and only son. Confused? Let's just say, he was treated VERY VERY special and so I can somewhat relate to Kay's son. This is why I'm sort of glad(huh?) that both my kids have special needs. They are stiff competition to each other for my attention.
Back to the subject: I had been thinking about respite myself recently. It is a scary thought. Who would this person be? Would she take care of Spencer in a kind and loving and effective manner? How much training would they have? I actually know no one that used respite services. I was never going to do it either. I have a great babysitter. I will just continue to spend more money that I don't have or just never go out unless I really have to.
When Spencer was formally diagnosed with PDD-NOS, I figured I could apply for something called "family reimbursement." I'm not sure what it is exactly but I think the government can help us pay for therapeutic toys or something like that. It's money basically. Money is always welcome here.
My Early Intervention service coordinator helped me apply so that I could be eligible for such services but then the subject of respite came up and I decided to see what it was all about. The more I thought about it, I wanted it. I figured if I got respite services for a couple of hours in a day, I can have them possibly come when Spencer is having ABA therapy(2 hours) so I wouldn't have to worry so much about leaving Spencer alone with this person. Wow, going out, without babysitting fees, guilt-free, worry-free? Sign me up!!!!!
She is right. I really need to make some adjustments in that department. I am falling out of love with my meds and would like to be rid of them soon. Did you know that my meds have artificial food coloring? Why? Do they think I would find it more desirable to take a pill that is pink or blue? I'm not a child nor a moron. I can take pills that are just plain white. I really can. Sorry about the ranting. It's just because I think the coloring is aggravating my psoriasis. I've become quite scaly. My acupuncturist is working on it. I hate that she has to spend her time fixing the side effects of my meds.
Anyway, if you pray or just think positive thoughts, please send us some good vibes and ask the heavens above to send a little bit of respite service our way. Even though I hate exercising, I do want the chance to get healthier.
(Pictured: Logan loves to wear the same shirt as Spencer. My brother started this trend because he raids the outlets and manages to find matching clothes for the kids all the time. And now I struggle not to buy them the same clothes when I shop for Logan- Spencer wears all of Logan's hand-me-downs. They always look so cute and happy wearing matching clothes. You could hardly tell from this picture that they have a crazy mom who is constantly daydreaming of running away from home to do the stairmaster or swim a few laps.)
p.s. How could I be so selfish? If you do send your prayers or good thoughts, please send a shout-out for Kay's respite services too. It sounds like they are very important to her family.
Saturday, February 14, 2009
I'm supposed to write what I'm grateful for on almost a daily basis but I haven't done so since I wrote my New Year's post. I am ashamed of this so today, I am going to shout out to the universe about the things for which I am grateful.
- I am still so thankful to my husband for being a great supporter of this blog. Not only does he not mind that I complain about him here but he actually gives me some of the best ideas I've had to improve the blog.
- I am grateful for my brother and his fiance who shower my children with love (and way too many toys). He doesn't believe in SPD but he stills buys Logan the best weighted blanket on the market. That's the kind of guy he is and I am so lucky he's marrying such a great person. I totally love her.
- I am so lucky that I got the most compassionate, professional, affordable neuropsychological evaluation I could ever imagine. I don't know where we'd be if I didn't decide to get this for Logan. Thank you Universe for Gayle Herman and the JBFCS.
- I am grateful that Logan received such great private speech and OT evaluations and I got them through my insurance co-pay of only $25 dollars. Jackpot!
- I am SOOOOOOOOO grateful for all the people who visited this blog. Over two thousand of you have dropped by in the two months I've been putting up posts. I'm not sure if that is a big number in the blog world but it's a number I never expected when I started this thing.
- I am extra grateful for the visitors who have sent me comments on what to do about all the things in my life I need to work on. I hope that I am not the only one who has benefited from the thoughtful responses and that we have all learned from each other.
- I am grateful that there are private special education schools that might be a match for Logan. (We are still awaiting to hear some good news) They are such beautiful schools. They really inspire me on all the possibilities there are for Logan and for all children.
- I am so grateful for the ABA therapy that Spencer has received. When Spencer was 21-22 months, he had only 5 words and had behavior that was really worrying me. Now, this child says lots of words including "Thank You Daddy" and can read numbers, name colors, and shapes. He just turned two a couple of weeks ago. Yes, I know, it's amazing, isn't it?
- I am grateful for all of Logan and Spencer's therapists but especially Spencer's feeding/speech therapist, Anastasia Pieri. When we first started, Anastasia met a weepy mom and starving boy who both needed a lot of help. She stood firm and looked at not just the speech/feeding needs but the needs of the whole child and family and helped me get a social worker and ABA therapy. I had no idea that these could help Spencer and while we still have a lot of work to do, it is fair to say that he is doing really great!
- I am also grateful for Logan's therapist and his school. I remember being very hesitant to send him there but ohmigosh, it was one of the best decisions I ever made, next to marrying my husband and having children. This school psychologist Giuliana Losapio is always willing to talk to me, be frank with me, and hold my hand as I go through this difficult process of putting him in an appropriate kindergarten.
- I am grateful for all the yahoogroups I belong to: ADD-ODD, adhdparentsupport, ADD-ADHD-Parents, ADHD_DrugFree, autismaba, GFCFrecipes, sunnymoms, and autisminfo. There are so many parents who care and want to help others. I am so glad I've found them and hope I have contributed a little to their lives.
- I am grateful for all the friends I've made since my life changed from a clueless mom to a clueless mom of special needs children. You know who you are. You have changed my life.
- I am also grateful for the friends who've stuck by me despite how stressed I am and how much I must have changed and have different interests now that I've got these kids with these issues. I am truly blessed.
- I am grateful for the Logan's first pediatrician who never took me seriously about Logan's behavior. If it wasn't for her, I might have had him evaluated earlier and perhaps decided that he'd be an only child. Then we would have missed out on Spencer! I can't imagine my life without this breast-squeezing, trampoline-jumping, seven-flights-of-stairs-climbing (2-3x in a row) toddler who won't let me sleep past 5:15 am. My favorite Spencer word: yeh-wo (yellow)
- Pictured above: I am grateful that Logan has overcome a lot of his sensory issues with water (he used to be really scared and still is sort of scared but he's trying hard). I'm also grateful that swimming has become a special weekly Daddy-and-Logan time.
Happy Valentine's Day to you all.
p.s. I wanted to clarify something on my last "gratitude" post. I said that my husband and I have a date every two weeks. These dates are at home when the kids are asleep and we have wine and cheese and talk. My social worker chuckled and said, "that's not really a date." Okay, they are not ideal but that's what we can afford and we are trying to get out more often now.
Friday, February 13, 2009
This idea was borne from the new feeding plan. Spencer's feeding therapist and ABA therapist helped me devise it for Logan. This is the beauty of having two special needs kids; you have a lot of brains to pick. Hey, did I just say, "beauty of having two special needs kids?" Whoa.
Anyway, the whole idea is this: Logan is only 5 years old. Putting money in a piggy bank means that he doesn't have any clue how much is in there so he doesn't know how close he is to going shopping or how hard he has to work to get more money in the bank.
So they suggested that all the money should be visible to him and this makes a lot of sense. The ABA therapist said why not put them on the wall with velcro? Great idea! Also great would be to put them in various parts of the apartment. My husband is terrible at giving him quarters. I believe it is partly because he must leave the room, find the quarters and bank and then put it in but if I put the velcro quarters and "dollar bars" in every room it will be easy for Kai or I to give him quarters and take them away too.
So far what I do know about the pay-for-good-behavior plan is that it has given him pride and he has been excited to get money and very upset when money was taken away. I think when he is older, we can still continue the plan but get a piggy bank that counts money automatically and displays it on a screen.
Anyway, to make these things, I went to Staples and laminated a whole bunch of "dollar bars" and quarters (an image pilfered from the web). I used colored papers for the dollar bars to make it more eye-catching. I used the cutter at the store too. It's better than a scissor. I really believe this new system is going to be more helpful to Logan and Kai and me. Wish us luck. I'll let you know how it goes and if you want my templates, email me and I'll send them to you. Lamination cost about 20 dollars butI am getting the velcro from a friend so I don't know the cost of that.
Thursday, February 12, 2009
With our very tight ABA/speech therapy/OT schedule for Spencer and school/clinic OT schedule for Logan, I get thrown off too when there is a change but this week, I instituted a new change. One that is better for me.
I started to take showers on a regular basis.
That's right. I have been a very dirty girl. This is how I knew I was depressed because I didn't even want to take a shower sometimes.
I usually took my showers at night after the boys went to sleep and the dishes were done and the lunch was packed. I would usually be exhausted by this time and the last thing I'd want to do is take a shower despite how relaxing it could be. So many times, I would just skip it and be Ms. Oily Hair the next day. The same goes for working out. Who wants to work out at 8 or 9 PM when your child gets up at 5 am? (That would be Spencer waking up that early. His gift to me.)
Anyway, I just said "Screw it," and I've been taking showers in the morning just like when I did when I was a commute-to-work mom. I would wash my face and brush my teeth in the shower too so I could get extra time under the warm water. Where are the kids? Logan is usually off to school, Kai takes him to the bus and I take my shower after I finish feeding Spencer and let him watch his Blues Clues while he's safe in a high chair. It's not a totally ideal situation but the shower really helps me feel good in the morning. I think starting my days feeling good in the morning is a good break in routine, wouldn't you agree?
(Pictured: I always like to put up a picture with my posts but didn't know quite what to do with this one so I just took a picture of myself with wet hair. I then realized that I have no pictures of myself. It's all of the kids. My photo albums look like my children have no parents. Are you like that too? So then I went crazy with the self-timer and tried to take pictures that I liked of me and wouldn't mind seeing 20 years from now. Here they are. My two breaks in routine. It was a lot of fun but a little overwhelming so I started to have trouble breathing. Am I crazy or what? I can't even have a mini-photo session without having anxiety. So hence you see the very weird picture of me trying to take a deep breath while the self-timer was going off. This is kind of what I look like when I am starting to panic. But I'm okay now. I took some Klonopin and I think it actually worked today. BTW, you should try a mini-session with your self-timer one time, it could be fun! Spencer was watching me do it and laughed the whole time. I like when my kids see me happy.)
Wednesday, February 11, 2009
The first thing I learned was that I am a very impatient person. You might even call me compulsive. That is what my social worker once said about me. This week, I proved her right.
How do I know that I'm impatient and/or compulsive?
1. I always talk about trying to get my husband on the same page but I devised this food plan completely without his consultation. In fact, when I told him that I made a new feeding plan for Logan, I told him to go read my blog to find out what it was. Yes, I am that horrible, I know. This also means that you all knew about this plan before he did. Am I the worst parent/wife in the world or what?** I should sit in a corner and reflect upon my shame. We call that bansong in Korean, it's like a time-out but much more shameful.
2. I rely on Logan's school psychologist for much of his behavior management and yet because I was in such a hurry, I didn't consult the plan with her even though the plan involved school lunches too. What is wrong with me? My first revision to my plan after talking with her today was to give him a small school lunch too so that he can feel accomplished, just like the way I do at dinnertime. I guess I give Logan a good-sized lunch because I am not there to give him more if he wants it but for now, I really need to shrink his lunches. Logan's school is great in that they have a GFCF snack stash for him (they requested it) and so if he was still hungry, they could give him more food. Is this a great school or what?
3. Food can be an emotionally charged topic for many and it still is with me. I have never seen so many comments on any of my posts. I am thankful for all the advice and what I learned most is that I need to relax about feeding the boys. I need to relax about a lot of things.
4. This was a big departure from the way we usually do things. I should really not be so compulsive when making such a big change. This problem had been nagging at me for a while but I almost treated it like the way you do when you glanced at your dirty neglected toilet one too many times and then you finally just got down and scrubbed it clean, forgetting that you have other things to do and pretty much not caring. I'm going to be more adult about things next time.
**I do forgive myself a little for not consulting Kai in advance because he knows how difficult it is to feed our kids and pretty much avoids doing it. In our house, the kids eat together, I am pretty much spoon-feeding Spencer and reminding Logan to eat and stay in his seat while Dad eats by himself at the dining table, undisturbed. When he's done, he does something else like the dishes or watches TV to "digest." After I finish feeding the kids, then I get to eat, alone. I know it's bad. We'll work on that too someday. Believe me when I say that on the days when Kai is home to eat with us, it is still pretty much impossible for us all to sit down and have a meal together unless the meal consisted of a well-frosted cake and milk. Maybe we should start like that and work our way up to chicken and broccoli. Hey, a new idea!
(Pictured: The boys finish the last of the Christmas cookies from the dinner party with our friends who are also GFCF and everything else F.)
Monday, February 9, 2009
In fact, at mealtime prep, before I take anything out of the fridge or open one capsule of the DAN! doctor's vitamins, I pour myself a glass of Shiraz. Klonopin is no match for the stress these boys cause me at dinner.
Both of my kids have feeding issues but Spencer has a feeding therapist and he has made great strides so I'm not worried about him right now. It's Logan. He's 5 and I'm still not happy with how he eats. I need to find a more effective and less stressful way to feed him. For the last two weeks, this is what I've seen from looking at him closely:
- He wants carbs and must be cajoled to eat protein and veggies. He doesn't love meat, not even hot dogs.
- Hiding veggies in food doesn't work. Sorry Jessica Seinfeld, you are no match for Logan.
- He asks for things and then eats just two bites.
- He eats better when someone is sitting next to him and encouraging him, but I can not always do this because Spencer (2 yrs.) still needs me to feed him.
- Spencer's feeding issue requires that he must eat in front of the t.v. and so to be fair, I put Logan there too but the t.v. distracts Logan so I end up having to move him away from the t.v. in the middle of the meal. Of course, he protests and gets angry.
- He barely eats lunch at school. He likes things for a few days and then he is sick of them. Rotating doesn't help. Once he's turned off, he's turned off.
- He comes home, probably starving but sometimes still doesn't eat snack. If he does, he wants carbs- no protein. I'm worried about that this isn't good for him since ADHDers are supposed to eat a lot of protein. As a behavior mod measure, if he doesn't eat the snack, I tell him, he will not get food until the next mealtime but that has its drawbacks.
- If he forces himself to eat something he doesn't like, he will later yak it up, especially if he ate his vitamin prior to this and skipped his snack so it is hard to give him things and tell him, "You get what you get, and you don't get upset." I think he needs food to keep those vitamins down but he likes nothing nutritious that I cook so I don't know what to do.
- Have tried prizes, desserts, money as incentives, but I can't get him to eat things he doesn't want to eat.
- Have used the timer as recommended in the book, 1-2-3 Magic but that doesn't work either especially since he stuffs his mouth at the last 30 seconds (typical ADHD procrastinator), gags and throws up, sometimes everything and then what do I do, does he earn his snack or does he to go to bed with an empty stomach or do we start over again?
I know what you are thinking. I should just put Logan on Ebay and auction him off like that Bavarian couple did their son.
But seriously, I have put back on my guerilla PR woman hat and set up a strategy to conquer this problem.
Goal #1: Make him eat two of the three or four choices given to him- basically he must learn to eat what he is given.
Goal #2: Make him eat within thirty minutes.
Goal #3: Make him eat at set mealtimes.
Goal# 4: Make him keep his food down since he needs it for DAN! meds and vitamins and possibly for psych meds down the road.
Goal #5: Make him learn and respond appropriately to his body's hunger. I am avoiding future malnutrition and obesity. Yes, obesity. Hey, anything can happen, right? I've met obese adult ADHDers in my old job publicizing ADHD awareness.
I've consulted my team of experts from Theracare to help me with Logan's feeding plan. I got a lot of inspiration from Spencer's feeding therapist Anastasia Pieri (pictured) who also received OT and ABA training. I've also consulted my ABA therapist Natalia Cardenas as well as my social worker to help me build this plan:
1. Breakfast: He's gotta eat it. Continue my tactic with making him eat two spoonfuls of sunflower seed butter (protein) with toast or cereal for as long as possible. If he eats enough, he can have his DAN! vitamin but we have a back up vitamin for that if he doesn't. He will get two quarters if he finishes before the timer rings. Since he's still just 5, Anastasia wants me to put the quarters on display so he can he can readily see how much he's earned has instead of using a piggy bank.
2. School lunch: If it comes back mostly eaten then he can have a fruit leather, bunny snacks or 3 quarters, his choice. His school always sends back uneaten food so that Mom will know. “Tell the school that you will reward him for eating his lunch, so that they can reinforce it at school since Logan will either not remember nor be too motivated if he does not get consistent reminders and reinforcement,” said my social worker.
3. Afterschool snack: He is given a choice to eat it. Forget the protein, I'll deal with that for dinner. If he doesn't eat it at the time it is offered, then he must wait until dinnertime.
4. Dinner: Start with VERY small portions to not overwhelm him and let him feel accomplished. He will eat with Spencer at the t.v. and I won't remove him from there if he doesn't eat. Rather, I'll try to have the t.v. off as much as possible to give him a chance to eat. Maybe I'll play some music. Spencer is likely to protest. There could be anarchy. I'll give him things that I want him to eat and if he finished two out of three, he gets a snack but a super snack if he finishes everything. I will pay lots of attention and give lots of praise. Anastasia believes that his poor behavior was mostly attention-seeking. I must give him more of my time. He also must eat all of his food before thirty minutes. If he throws up, he can have more dinner but no snack.
Other aids: I will frame a picture of him eating and finishing his meal and put it right in the dining area. I did this already to boost his self-esteem and help him with visualization but framing will re-emphasize its importance. I will rewrite my food rules (pictured, yes, it looks horrible, I know) and put it in a more prominent place. (sitting, using utensils, napkins, no mouth stuffing, no toys, etc.)
I invite you all to add your experience and two cents and even a comment like, "Jenn, this ain't gonna work." I need your help. This is huge for my family and I know down the line, Spencer will learn from it too. He's already copying Logan more and more and now refuses to eat his DAN! vitamins unless Logan eats his first.
Saturday, February 7, 2009
When I was a little girl, my Dad used to call me "Mot Nani." It literally means "ugly child." This of course hurt my feelings terribly. However, he later explained to me that it was a term of endearment because you are attempting to make the "ghosts" lose interest in you by calling you ugly. Parents who called their daughters "pretty" were basically asking the ghosts to cause trouble or take their daughter away.
I say this because if you read my last post, you'd know that I had a most wonderful day but I think I attracted those "ghosts" to come and play tricks on me.
First, I had the worst sleep I had in weeks! I had a weird dream that my husband was driving me to reunite with my ex-boyfriend and then when we got there, I changed my mind and decided to stay with my husband and my ex-boyfriend threw a tantrum. Weird dream - I know but what was interesting was that I realized that I was partially awake after that and unable to fall completely back asleep.
I think since I hadn't taken Klonopin that day, I wasn't able to sleep through the night. I didn't realize how much I depended on it even when I was asleep. Honestly, I didn't think it did much for me during the day anymore. Wine calms me down a lot faster.
The rest of my day was hard since my eyes continued to burn with fatigue. The day got worse after Spencer woke from his nap and basically cried throughout his entire ABA session. No one could figure out why. Then Logan came home and I was really exhausted by then and had to lay down. When I lay down, Spencer pretty much attacks me, grabs my breasts, squeezes them and my stomach (all that flab) and really can't stop himself despite redirection. But I had to let him attack me because I just couldn't sit upright anymore.
Those "ghosts" continued to screw around with us. After being really difficult today, Logan ate all his vitamins and then some dinner and then threw it all up just about a foot away from the toilet. Spencer did his part too by pretty much refusing to eat anything for dinner.
Anyway, ghosts or no ghosts, I realized that I have to rethink my medications. I need to figure out if my anti-depressants are working. I have to face the fact that Klonopin is not working as well as it used to. I know this because I have started to yell at Logan again this week. Also, I can't believe how hard it was to sleep without Klonopin. In addition, my psoriasis has gotten worse and sometimes, I feel like my acupuncturist has to spend much of her time getting rid of all the side effects of the medications in my body.
I also have a confession. I think it's drug-related so I'll get over my shame and just tell you. I found Spencer in my bed in the middle of the night twice and had no idea how he got there. Usually, if Spencer wakes in the middle of the night, we just put him back on his back and walk away. He never sleeps in bed with me but I must have put him there and the scary part is that I have no recollection of doing so.
I still need the drugs. I'm pretty sure of it but I think I need new meds. I wish I could go to a psychiatrist instead of an internist to prescribe my medication but I still have to wait to recover from the kids' medical and lawyer bills since my health insurance has a very poor mental health plan. Wish me luck. I'll be needing it.
(Pictured: This is my family after living in this country for just a couple of years. What do you think? I know you can't see my face that well but was I ugly enough for the ghosts to leave me alone?)
Friday, February 6, 2009
I had a similar opportunity yesterday and it was truly gratifying. I always wanted Kai to see how stressful it was to have both of the kids at home after Logan comes home from school. Yesterday, he got his chance or should I say, I got my chance.
Logan comes home around 3 PM and that is around the time I take a Klonopin because I would find it harder and harder to breathe.
Here was my bold step: Instead of seeing my acupuncturist on Sunday night after the kids go to bed, I changed my appointment to the most stressful time of my day(4-6:30PM, M-F) and gave Kai a chance to do my job of watching the kids and then feeding them dinner. I could have been really cruel and not even prepared dinner (his and theirs) but I did everything in advance and then left.
I was gone for less than two hours but when I came home, Logan was crying, he had not finished dinner and the house was a mess. According to Kai, Spencer had refused a lot of his foods too and I could tell Kai was stressed. Actually, he seemed perplexed too. He said that Logan was just crazy today and asked me if he acts like that all the time because he doesn't act like that on the weekends. "That's because both of us are home on the weekend. The weekdays are always harder because it's just me here alone," I said. One lesson learned: two points for me!
Later, he asked me to ask Logan's teacher if Logan talks loud at school. Apparently Kai does not know that talking loudly and too much is a symptom of ADHD but now he knows because I told him. Another lesson learned: two more points for me.
As for Logan "going crazy", I told Kai that Logan must get a time out as soon as he breaks the rules. If he lets things slide then Logan may just continue to misbehave and maybe even get worse. I am not sure how much Kai looks at our rule chart but today, I grabbed the opportunity to really emphasize its importance. We learned this in parent training class too. When standing rules are broken, you must always give a time-out - no exceptions.
So did Kai learn anything today? I think he did, but how much? Only time will tell. He did have a very busy morning but I think those last two hours with the kids really did him in. He fell asleep at 9:30 PM.
What did I learn today? I learned that giving myself a break by going swimming and getting acupuncture during "business hours" can be surprisingly guilt-free. Also, giving my husband an opportunity to see how hard my life is and having him "get it" can make one feel........... there are really no words to describe the bliss. And guess what? No Klonopin today! Not one! Ten more points for me! Hooray! Ok, I did have a glass of Shiraz but I needed to celebrate this post!
(Pictured at right: My absolute favorite time of the week-acupuncture. Hyun takes good care of me. Here I think she was healing the points in my back where my psychological stress affected my body physically. All she did was press a point on my back and OUCH! That's where she knew to put the needle. Amazing! Pictured above: Our rule chart- Yes, I know it needs to be redone. #3 refers to his blankie that is not allowed to come out of his room or we spend an hour looking for it before bedtime. #7 is an idea from his school psychologist, Giuliana Losapio, smart woman. This rule instantly nullifies Logan's "but Mommy, that rule is not on the chart")
Thursday, February 5, 2009
Here is a new story about food allergy tests not being accurate. All DAN!s would probably say this is old news. Still, I am annoyed that there isn't something more reliable for the general public to use. I remember that my kids only threw up on eggs but never showed symptoms on anything else. They both had crazy eczema too. When I finally got an allergy (blood) test on Spencer and he tested positive for soy, wheat, dairy, peas, and other things. I felt sick to my stomach. I had only seen a reaction to eggs and he had eaten Yobaby everyday for months. I felt like the worst mother in the world.
I don't know what to believe anymore. What causes eczema, is it food and/or environment? Tara Parker-Pope says both.
Are my kids really allergic to gluten and corn? Can I believe my DAN doctor's allergy test since his are different from the ones in the story? Today Spencer is also getting a conventional allergy test even though my DAN! won't rely on the results totally, we're just going to take a look at what it says. Even though they say it's not totally reliable, I still hope that he tests negative for much of the things that came up in the last test. Nutrition is a concern and my kids are really bored with their food. They have ADHD too so you can imagine how fickle they are.
P.S. In the article, one doctor is quoted as saying, that if your child doesn't react to the food then he is not allergic. But there are so many ways a child can react and isn't it possible that we may not notice all the reactions? This is frustrating but at least some parents may find this news helpful and seek more answers. They may even try bio-energetic assessment or NAET. I'll go into that someday.
Pictured: Logan at 5 months with crazy eczema, not just on his face, it was all over his body too. I rubbed so many steroids all over him but it took so long to heal. That was when he was drinking milk-based formula. I wonder if that caused it. We'll never know, will we.
Wednesday, February 4, 2009
One thing I haven’t talked about in a while is my marriage. If you recall, my dear husband Kai, said he would read a book that I asked him to read on improving marriage. I’m pretty sure he stopped reading it.
I’m not sure how to become happier with our marriage. Once in a while, I say, “We need to talk.”
I have to ask him to turn off the TV and ask him to look at me (sounds like I’m talking to
Anyway, instead of blaming him for our marital woes, this time I decided to take a look at myself and see where I may be annoying or irritating him.
- I lose lots of things like my library books and last night I lost the cover for the USB port thingy that stores information. He HATES this about me. He never loses things or pay late fines.
- I always ask for hugs and kisses in the morning even though I know he is not a morning person and would much rather be left alone.
- I rarely cook him dinners that he likes. A lot of it is GFCFSF and I try not to fuss over dinner. I have to make it when Spencer is napping so I don't have time to make something elaborate. It also has to be reheated when he comes home so it's never fresh. It also gives me stress since many times Logan will not eat what Spencer eats and vice versa and they can't or won't eat what Daddy eats so I have to make three dinners.
- I only talk about the kids. He'd rather hear a truncated version unless its humorous or very interesting. He does like hearing about the blog tho so I've sort of become interesting.
- I have no idea about what is going on in the financial world, as tumultuous as it is. It just happens to be his line of work so I think I lose respect from him in this area.
- I blog too much. At first, he was happy that I had this in my life but then he'd see me at the computer at 2 AM. He knows that lack of sleep affects my anxiety and he rarely says what is on his mind. Thus I don't know if he's mad that I'm working so late or he's worried about me.
- I am not as thin as when he met me. He's never said anything but I'm sure I'm not as sexy to him as I used to be. I don't even exercise that much despite my new gym membership.
- There are things in this house that needs to be organized that remains untouched. Note my counter space from a recent post.
Maybe I’ll work on this list, one at a time and see if it makes a difference in how he acts toward me. I hope so but I'm already a bit doubtful… For the past 36 hours, I didn’t have internet access so I ended up cleaning the whole house and doing a lot of organizing. Did he have any comments? Of course not. I have a cup of tea in my hand now and I have been trying really hard not to throw it at him. It’s not even hot anyway.
(Pictured: Kai and I had dinner on M on the Bund in Shanghai during our honeymoon. Behind is is a balcony view of the Bund. Gosh, our lives were so different then. It was only a little over six years ago.)
Sunday, February 1, 2009
It's been almost six months since we met our DAN! doctor and he's been treating Logan for about five months now. In the beginning, we took a ton of blood tests (15 vials!) and he spent hours trying to explain to us what the results meant.
Recently, we were very tempted to give up. My husband and I were going to try psychiatric medication for educational purposes but if we gave him Ritalin or Strattera, how would we know if he was really healing? I couldn't let all of our investments in money and energy go to waste. Logan, himself has been through a lot as well.
We decided to stick to our original plan: give the DAN! doctor one whole year to make a difference. We even started Spencer with the DAN! doctor this month even though we haven't seen many results with Logan because we didn't think it was fair to Spencer to make him wait. This type of therapy is also supposed to work better with younger children anyway.
So there it is. Our progress is not black and white but clearly there is some progress, whether we can attribute it to the DAN! is still in question. I would appreciate any comments on this post, even, "Jenn, you are royally stupid," or "you picked the wrong link for mitochondrial issues." Whatever. I'd love to hear from you, especially those who have experience in this area as I have a feeling that many of this blog's readers are not GFCF.
addendum: After a reader asked for more info, here it is:
1. His diet prior to allergy testing- no soy, gluten, citrus, casein, chocolate, peanuts, eggs, caffeine, alcohol, artificial food coloring, MSG, preservatives like BHT, nitrites, no big fish like salmon or tuna
2. His vitamins are a mix from his doctor, they include a bunch of stuff. He's also doing fish oil.
As for his meds: I feel weird writing them all out here, if you want to know, email me personally.
3. His allergy test showed he was highly allergic to wheat but somewhat for soy and less for corn and milk. This test is called serial endpoint testing.
4. His blood tests did not indicate that he needed to chelate or anything like that.
(pictured: Logan tries to show me that he can wait patiently for his game to load up on the computer. Last year, when I wasn't supervising him, he ripped out a bunch (10+) of the keys. I still have no idea what motivated him to do that.)