Monday, March 30, 2009

A Change of Pace (for Everyone)


















At one of Spencer's team meetings, his therapists all advised me to break some old habits and try doing new things. This meant, trying new foods which requires me to offer him a new food at least 15-20 times. How tiring! It also meant that I had to try to get my family to eat together at the same time. I started laughing when they suggested that but I told them I would try and I knew I'd have to do it on a day when things weren't normal, when we had to break routine. However, I must say that I really love my routines. To me, they remind me of goals, talk to my children without me saying a word, and help me remember to do things that I would normally forget.

Recently, I was invited to spend a couple of days at my brother's new apartment in Philadelphia with his fiance. It would mean that I would have to break some routines and go out and do something very different. Could two special needs kids stay in a car for over two hours? Can I handle their diet issues outside of the home without killing my host and be able to go out to eat at least once? Can they handle being in a home that doesn't have children and thus not childproof? Can I handle it? There was also a side issue. My mother was invited too and she actually decided to go which was amazing because she treats her job like a special needs child and never leaves her baby. Even when she is home or visiting my place, the restaurant, where she pretty much runs everything, is always on her mind. Yes, my mom handed down her neurosis to me. It's okay. I still take responsibility for my own actions.

We decided to go and those two days in my brother's home was a little tough on us. Spencer clung to me as soon as I opened the car door. We hadn't even entered the apartment and already he was trembling. The elevator had windows and it seemed to zoom up and down and I could feel his legs locking onto my waist. "Did I make a mistake by coming here?" I wondered. But the minute we got to my brother's place he was happy to run around and play. I think it's because both Logan and Spencer knows who is family and they feel instant love and comfort. My sister-in-law (to be) even had bought special plates and cups for them and they were so happy.

Still, it was a bit of a sensory overload for them. Even going into my brother's apartment's lobby scared Spencer. My brother moved into a converted factory-turned-loft. It was beautiful but one thing missing was that there was no door for the bedroom. That was the first thing I saw when I walked in. How would I put Spencer to sleep if I couldn't turn off the lights and shut the door? Oh well. "A change of pace is good for everyone," I told myself, "Let's see what Spencer will do." Can you tell I am very protective of my youngest? Maybe too much.

They also started dancing as they heard new music and of course, Logan would not stop playing with their lamp. Oy. It was one of those jointy skinny bending lamps that looked more like a robot arm so Logan would bend it and turn it off and on and he just couldn't keep his hands off of it. Yes, this is how I know he's still impulsive but I know that he tries really hard to listen.

Spencer lit up the whole room after dinner, none of which he ate of course but nevertheless, he performed Itsy Bitsy Spider, Open Shut, If You're Happy and You Know It, and Wheels on the Bus for everyone. My mother fell in love with him right there and perhaps for a second she forgot her demanding job. Kai also, had never seen Spencer do all these things and so I was happy to just watch Kai marvel at Spencer's amazing progress. I don't think we expected nor saw anything like that from Logan at that age but we neither pressed Logan to do these things nor did he have any of the therapy interventions that Spencer has now. My family doesn't believe Spencer has special needs now and I credit his therapists from Theracare and quite possibly the GFCF and all other things F diet for this change. I tried to explain that Spencer's behavior was very similar to Logan's (at that age) before we got him therapy. Actually Spencer was worse because Logan never went on a food strike and was able to self-soothe with a blankie and pacifier.

What did we do about food? It's pretty much what I didn't do. I brought a lot of stuff which never left my bag. I let them eat some cheese which they both loved. Oh my gosh, does Logan love cheese. I think it's a better motivator than his GFCF candy treats. And my brother who is a food snob loved that Logan appreciated good cheese so he would not stop indulging him. I had to make him stop after a while. I didn't want him to have casein overload. Who knows what could happen? Possibly nothing, I worry too much.

Okay so I totally caved on the food part but who can blame me? It was only for two days and it's not like my DAN! doctor said they can never have these foods. They are allowed to have a little occasionally so there was no better time to give them these foods than when you go out of town and you need the convenience. However, I must say that going out of town is never a good time to test foods because anything can cause a reaction and you'll never truly know the cause. I could tell that there were different allergens in the air. Even I got a little sniffly.

Was it all roses because we weren't totally GFCF which is always the biggest stressor for me? NO WAY! Even with the extra set of hands from my mother, brother and new sister-in-law, they were still a handful. An eczema rash that I suspect Spencer had been getting from the small amounts of corn snacks that I use to entice him to eat veggies actually blew up at my brother's place. I think it was from the cheese or possibly just from the new environment. My brother's place smells really nice but that could be bad for an allergic kid.

Overall, Logan did well and was happy to be in the new environment. He absolutely loved the Please Touch Children's Museum and had some pretty good behavior there despite the huge crowds. At my brother's place, I had to figure out how to make him cooperate without dragging my entire token reward system with me. (No quarters on the walls). It was pretty much back to using praise and threatening to take away his beloved Geotrax trains. I was really prepared to leave one in my brother's place and that would mean he couldn't have it until we returned there and who knows when we'd be invited again. Luckily, he earned all his Geotrax trains back and I taught my mother and sister-in-law that he needs to be ignored for bad behavior and praised for good behavior. He picked up on that right away and so did they.

My mother also got to be a Grandma and said, "Let him have the cupcake! Why are you bothering him when he's eating!" when Logan helped himself to one of my GFCF carob cupcakes. I got mad because he didn't ask for it although I did leave them right next to him- too tempting for an impulsive kid, I should know better. Once again, I was reminded that I have to relax more about food. This is the lesson that everyone (especially readers of this blog) tries to teach me but still this is so hard to achieve. Maybe it's like all of my friends are trying to tell me that I smell and I say that I know that I smell not really knowing how badly I smell and I say that I will try hard to shower more often. I think the trouble is that I just don't know how much more often I should shower because it is so hard for to me to sense how badly I smell. I bet Logan has the same issue as I do. We are both trying. Either way, Logan had his cupcake and after seeing that many of my cupcakes were eaten by my boys, I was happy that I baked them.

The aftermath: I didn't realize that there would be one but there were a lot of positive effects to going away for two days. When we came home, the boys had snacked a lot in the car and Kai and I decided to eat first and feed the boys after a bath but the minute we sat down, Spencer got curious and immediately, I put out two bowls of soup with rice and the two boys fed themselves at the dinner table with Mommy and Daddy and no T.V.!!!!!! A huge milestone for our family. Okay, so I didn't eat much because they needed a little help and Spencer didn't finish his food but Logan did! I was so proud of them and I knew it had everything to do with going away for two days. Additionally, Logan did great in school the next day and Spencer had fabulous therapy sessions at home. Lastly, Spencer tried raisins for the first time in his life and I didn't have to push them on him for the 20th time. He just asked for it when he saw me pack lunch for Logan. There are so many good results from just one out-of-town trip. It can't be a coincidence!

Luckily, we've been invited back and this time, my mother won't be there and my brother and new sis will put the boys down while Kai and I go out for a date. I never thought I'd be so happy that my brother moved so far away from us but it's proved to be a huge benefit! Overall the trip was tiring but I can't wait to go back and challenge myself and my family again. What a great experience.

(Picture on top: A family picture at the Philadelphia Museum of Art! This time, we made ourselves take one with these fidgety kids. 2nd picture: Spencer and mom at the museum. He loved that museum pin! Picture on bottom: Change is good. Logan enjoys a family dinner together.)

Thursday, March 26, 2009

My Big Mental Health Apology












I have to apologize to lots of people. I think I've mentioned to you before that I used to work as a healthcare publicist. I used to work on lots of different medical issues and psychiatry was one of them. They ranged from the basics like anxiety to more quirky issues like seasonal affective disorder, you know, when you feel sad in the winter because it's darker. I also worked on more controversial mental health topics such as premenstrual dysphoric disorder (yes, they say it's real), post-partum psychosis, and my most successful accomplishment gaining media coverage was in adult ADHD- yes, how ironic!!!

I worked really hard setting up interviews under tight deadlines. In my line of work if you snooze, you lose - end of story. So in my hurry, I rarely asked these psychiatrists that I tried to make famous, "Do you take new patients? Do you take insurance? How much do you charge, anyway?" I never cared. To me, it was all about getting the job done FAST.

Now I realize that I was being heartless to so many people because I am one of these people now. There are so many people with terrible mental health insurance plans and probably seeing not-so-caring doctors. My plan requires me to pay half of my doctor's contracted fee with the insurance company which believe me, is always a mystery to everyone. When I call a doctor's office, no one will tell me what the contracted fee is and they actually expect me to walk into the office not knowing how much I'll pay.

I paid my first visit ever to a psychiatrist this past weekend. I went because I wanted to replace the Klonopin and see if I needed a better anti-depressant. I have such little personal experience with these drugs, it's hard to know what's working and what's not. Thankfully, I know that the most addictive drug, Klonopin, definitely does not work for me.

So when I paid my first visit to this psychiatrist, I really did pay. I paid for being so careless to the people I was trying to reach as a publicist because I had just entered the world of managed mental health care and what a cold and cruel world it is. With such fragile emotional states, shouldn't this be one area of medicine that is just a bit more gentle? Some people don't even consider it medicine even though drugs are such a huge part of it! My insurance company deals with this in a completely different department. WHY? I know, I'm being naive. Welcome to America.

I already told you that I walked into the office not knowing how much to pay and they actually expected cash too. We are talking about one hundred dollars at least! This psychiatry practice also double-booked me with another patient who was also new and thus I waited two hours to see the doctor.

When I finally saw him, he didn't even apologize to me. I really believe in apologies. It's just courtesy sometimes but to me, it counts. I asked him if it was customary for him to make his patients wait two hours to be seen and he said that if this was going to be a problem then maybe we shouldn't start a relationship! The nerve!!!!! And even though I knew he double-booked me with another new client, he had the gall to blame his one particular immigrant patient population for their doctor-seeing habits as the cause of the wait.

Even though I should have walked out on him, I didn't. I needed to try a new prescription and I had already waited two hours. He did some quick tests with me and asked me questions to rule out obsessive compulsive disorder and bipolar disorder and then gave me another drug and even though I told him that Klonopin was not working for me and brought in my remaining pills to show that I'm not an addict, he was very hesitant to let me try something else. He even told me to keep taking the Klonopin but just take less. Like how would that help me? Whatever. You are SO not my doctor anymore.

Surely, others are not as bad as him, I thought. But for the past few days I've been on the phone like mad trying to get a new doctor nearby who will see me at night when my husband can be home with the kids and I have not had a lot of luck. There was one doctor who stood out on the list and he was an osteopath. He told me that most doctors will just give me drugs and send me away and he doesn't work like that. He said that if you have a psychiatrist who takes insurance, he will likely not have openings in the evening or weekends if he even sees patients at that time and if he does, I will be waiting for two hours to see him and that is exactly what happened to me!!!! But after slaving away with my DAN! doctor for my children for so long now, did I really want an osteopath for me? I was imagining he'd push GABA and 5-HTP on me and I don't want that either. (For those of you who don't know: GABA and 5-HTP are supplements that you can get in the health food store. A lot of people who don't want psychotropic drugs use these. I used them on Logan and didn't see any changes but I've heard that it helps others.)

So I've been rethinking my mental healthcare. First, I will be more stress-free about finding a new doctor. My goal is to not need one in the near future. I am going to go back to basics too. I had an ear problem a while back and so I stopped swimming but I am going to do that again and also do yoga, like I promised myself. I really want to give myself a chance here and realize that I actually have gotten a lot better since that day I was in the ER.

But still, I want to apologize for being so callous back in those days when you were being bombarded with these stories about this disorder or that disorder. I know we are still hearing those stories today, they'll never stop. But seriously, getting good mental healthcare shouldn't have to be so hard, so expensive, and so degrading. I deserve better than that. We all do. Again, my deepest and most humble apologies. I know it's not my fault that the mental health system is this way but I wonder how much healthier we'd all be if all those responsible for mental health medicine would be just even a little bit more thoughtful. I think things could be different.

(Pictured: Back to basics: We've been so ingrained in our routines, we forgot to take a family picture so here is a recent one with the self-timer. This could be our first family picture. I'm not sure. I am too afraid and ashamed to look back and confirm that.)

Monday, March 23, 2009

Paying Your Child to Behave Part 3
















Just wanted to give you an update on our paying-your-child-to-behave plan.

So far, so good. He is still interested in earning quarters for good behavior. He still looks at the chart to see how many quarters he gets for whatever good deed he does. He also corrects me if I don't give him enough quarters as in accordance with the chart.

I also use quarters to challenge him. I will say if you can finish cleaning up these blocks in 15 seconds, I will give you one quarter. I start counting and then he will start rushing. I think my counting is more effective than the timer sometimes because he is constantly hearing my voice and I guess it just sounds like a very loud timer ticking just for him.

I also find that he can learn to negotiate with the quarters. I am not sure where I read this but I think it was in 10 Days to a Less Defiant Child by Jeffrey Bernstein where he said that teaching your children to negotiate is a good skill that they should learn. So we negotiate quarters with chores and I think he's happier because he feels he had a say in how many quarters he gets.

One thing not so great that I did notice was that he tried to pretend not to care that he lost a quarter a few times by saying, "I could earn it back." After hearing that one too many times, I told him that it sounded disrespectful and he still didn't stop so I gave him a time-out and he no longer says that anymore.

We made some changes too. My husband saw that there were quarters all over the apartment and it looked a bit overwhelming. The whole point of putting them on the wall was so that he could know how much he had but when you have too many, it defeats the purpose so my husband came up with the $10 bar idea and together Logan and Daddy convert quarters to a $10 bar when he has enough. (I also made Daddy go to laminate and cut them at Staples so he gets a sampling of how much work this was for me) Overall, this was a really good move because he was able to work his way up to something more expensive which is of course is something he really wants. This time it was the Geotrax Grand Central Station. Coincidentally, Toys 'R Us has it labeled as a toy for "Differently-Abled-Kids." Anyway, it took weeks but Logan finally earned the $54.00 he needed to buy the toy. I was really proud of him. He worked pretty hard that last week.

The thing that I found cutest about this whole thing which is probably off-topic but what the hell... Logan takes the "dollar bars" off the wall and lets his little brother attach the velcro quarters onto the dollar bars since Spencer can't reach that high. I guess this shows generosity or caring on Logan's part because you'd think he'd be so proud to get the quarters and he'd want to stick them on himself. I love my little boy's heart. I just gotta train that brain of his to self-regulate more!

Read how this system evolved:
Paying Your Child to Behave Part 2
Paying Your Child to Behave Part 1

(Pictured on top: Logan shows off his new toy. Below: the new $10 bars Kai made to help organize our system.)

Saturday, March 21, 2009

I Love My New OT!















Do you remember when I asked you all to help me get an OT for my son? You were all very helpful. I got an OT right away but Spencer did not get along with her AT ALL. For weeks, he would cling to me and try to get away from her.

Then, the strangest thing happened. She quit, citing health problems. While I felt sorry for her, to me it just felt like Spencer didn't have an OT for three months. I called my service coordinator at Theracare and shared my angst with her and in a couple of days, they told me that Spencer would get a very experienced OT supervisor who was coming back to the field to treat children again.

On his first day, Albert Dungca (OTR/L) came over and talked to only me for twenty minutes and then he stopped talking to me and turned to Spencer and instantly he had Spencer's full attention. Spencer never does that on any first day with a therapist. Whenever Albert comes to our house now, Spencer forgets who Mom is and goes straight to Albert.

I don't understand how this happens. What makes one therapist so likeable and another therapist has to try hard to get him to stop crying for Mommy.

Albert comes early in the morning which might be one reason for so much compliance but I think there is something in Albert's mannerism, voice, and inner-confidence that gets Spencer's attention. Albert has a very even-toned voice and gets down to Spencer's level when he has to get his attention. OH, and I love how Albert narrates what Spencer or he is doing to teach him speech as well.

Albert also takes into account my concerns and is very patient about trying to find out if it's a sensory issue or a behavior issue. With Spencer it really could be one or the other.

When I see Albert and how amazing he is, a million questions come to my head.
  1. Is Logan's school or clinic OT as good as Albert?
  2. How do I really know if Albert or anyone is making a difference?
  3. Do those goals on the IFSP or IEP for OT make sense to anyone?
  4. Should I try to get OT done at a clinic or at school or both?
  5. How do I know if an OT really has sensory training. Is there is certificate?
  6. How does an OT figure out if it's sensory or ADHD?
  7. How will I know if brushing is really helping Spencer? It's such a pain.
  8. How do I know if I have a good OT?
  9. How much communication should I have with her? If she doesn't talk to a lot, is that a bad sign?
  10. If Spencer makes an improvement in an area, could I really attribute that to the OT? What about just growing out of it or possibly the new B12 shots I'm giving Spencer? I must stop my head from spinning or else it might fall off.
I used to be so clueless about my kids' OT but this year, I decided to really get on top of it. I even changed my son's therapy clinic this month to a smaller family-owned clinic where the owner is actually the one that is treating Logan. I really respect OTs but I really wish there was some way to measure its effectiveness and figure out if you have a good therapist or a lousy one. I am going to try to find some experts to talk to so if you have questions for me to ask, email me or put it in the comments section.

Wednesday, March 18, 2009

Movement Helps ADHDers Keep Alert

Two studies published in this month's Journal of Abnormal Child Psychology discussed how children with ADHD will need to move around to stimulate their "working memories." I've heard of movement breaks and chewing gum on IEPs but how much activity is this research saying we should let our children have in school or anywhere? When Logan watches t.v. and starts walking on top of the couch, I tell him to GET DOWN. Maybe it is okay to some of you but I just can't even look at it.

The research, authored by Professor Mark D. Rapport, Director of the Children's Learning Clinic at the University of Central Florida claims to be the first study to examine the relationship between working memory and children's activity level. In an email interview, he said that "working memory is the cognitive process that enables you to hold (store) and manipulate (process) information for a brief period of time." The two primary components of working memory were primarily speech-based (anything that can be given a name, including letters and shapes) and spatially-based (e.g., remembering locations that must be re-arranged), respectively.

In the past, Professor Rapport said that we did not know why the children were moving around so much but in a study that compared a set of typical boys with and without ADHD, both the same age and intelligence, revealed some important insight into our children. For example, he found that both sets of boys sat relatively still for Star Wars and for a computer paint game. Then the children were asked to perform an activity that required them remember and manipulate letters. This exercise found the children with ADHD to become much more active, swiveling in their seats and moving their hands and feet. Sound familiar? Dr. Rapport has an idea why.

His research suggest that there is an actual function to all that fidgeting and hands touching everything: the children are trying to keep their minds alert and to help them focus. Occupational therapists that I've spoken with have said similar things but Dr. Rapport had not read those studies to discuss the OT aspect of that theory.

Dr. Rapport used the analogy that adults fidget in their seats to stay attentive during meetings. I am so guilty of that, are you? I can barely sit up straight.

Also of importance, in the same issue of the journal, Dr. Rapport found that the working memories of the ADHD children were lower than that of the typical children. This made me a bit sad. He tested this through various measures, some of which included:

Visuospatial Working Memory- this was to see if a child could remember the sequencing of dots by looking at the visually at a computer. They were to then repeat what they saw.

Phonological Working Memory Task- the children were challenged by being given jumbled numbers and letters and were asked to recall the numbers in chronological order and then say the letter last. (e.g. 5,3,T,9 should become 3,5,9,T)

Of course, this is not necessarily news to us in a way but it's a little sad. Dr. Rapport says, "there is currently very limited empirical evidence that working memory can be significantly improved by training, although we hope to work on examining this question in the near future and I know that others in the field are already examining the possibility." Dr. Rapport warns parents to be wary of non-empirically proven methods already on the market to improve their children's working memories. I'm sure we've all seen ads and some of us have even tried those methods. If you have, please share in the comments section.

He also suggested reading, Susan Gathercole’s Working Memory & Learning: A Practical Guide for Teachers. Dr. Rapport added that medication helps many children in the short-term but that he viewed it as a maintenance therapy and not a cure.

As far as movement in other situations where excessive movement is not exactly appropriate like at the dinner table, he said that there are certain situations where working memory is not really necessary such as watching a movie. Thus, he said, "I would provide them with very clear but reasonable expectations….such as, as soon as you are able to sit quietly for 15 minutes during dinner you may leave the table and [given direction]; and I would have either a clock or watch in full view. I developed the Attention Training System many years ago to help in many of the situations you describe (although I originally developed it for the classroom, parents have corresponded with me and related the many ways they have successfully used the system, such as at dinner time, practicing the piano, etc)."

So where does it leave us? I'm a little sad. Does this mean that my children's working memory will be impaired for life? I wonder how much this will affect their social skills. All I can say is that it is nice to know that some researchers feel there is a purpose to the motion and I will think twice before I tell Logan to sit down or at least perhaps I'll find some constructive way for him to get the movement he needs to stay alert. I do sympathize with him. I fidget during meetings. I eat. I drink coffee. I look out the window. I get up to get a sweater. I don't pay attention to everything everyone says and at the end of my meeting, my notes look like I was there for five minutes.

Anyway, this really is opening up my curiosity to what OTs have to say about these situations. In fact, I really want to know how parents can tell if they have a good OT and how they should expect progress. I just got a new OT for both Spencer and Logan and it is very exciting. I have a lot of hope. If you have any OT questions for a professional, please send me an email or leave a comment.

P.S. 3.25.09 Time Magazine just wrote a great article about this study!

Monday, March 16, 2009

Goodbye Cheese, Yogurt and Happiness!

















You might recall my post about Logan being allowed to have casein, the protein found in milk. I had been avoiding it for several months to follow the gluten-free, casein-free diet.

In August of last year, I felt the diet wasn't enough to help Logan so I sought the very expensive consult of a DAN! doctor. This practice initially tells many parents to stay off the milk, gluten, and a whole bunch of other things including soy, citrus, chocolate, peanuts, peas, corn, eggs, processed sugar, alcohol, and caffeine. (Yeah, you won't give your kid a beer but this meant that I had to buy alcohol-free vanilla- not easy to find) I was also supposed to avoid preservatives and MSG and things like BHT and nitrites, and artificial food coloring.

So now you know why I might be having anxiety. This is a lot to cut out. I even had to make my own playdough with really really expensive natural food coloring that just looks like different shades of violet.

So after a special allergy test that my doctor used and no it's not an IgG test or an IgE test. They have their own special test which said that I could give Logan a little milk and corn. Corn? Who cares about corn. Milk has the protein. Milk is everywhere. Milk is yogurt. Milk is cheese. Milk can be on top of my gluten free pizza! I almost cried when I heard the news. Logan loves cheese.

When I first gave it to him, it was done sparingly but after a while I think I overdid it. I used the squeezable yogurts to encourage him to eat his lunch. I used cheese to encourage him to finish his breakfast. He always loved yogurt and cheese. I am totally into ABA now, can you tell?

Then something weird happened. He changed. I found him clinging to Mao Mao more. That was the first sign. Mao Mao is his dirty torn-up blankie that was once a towel with a lion's head. Mao Mao is not allowed come out of Logan's room because we don't want to spend an hour looking for it at bedtime but for some reason, Mao Mao kept coming out of the room when for months, Mao Mao never left the bedroom because it was a rule on my chart of rules. He was also more emotional. That was weird too. And he didn't go to his time out right away. Of course no kid rushes into his time out but he really was different.

Who was this boy? I called the school to see what they saw a difference but they said no. How could this be? Why only at home? Was it me? For a week, I thought it was me and maybe I was in some mood and he was keyed into it but then he had two poop semi-accidents which (never happens) and I knew it had to be gastrointestinal. This confirmed my milk suspicions and I was so sad. It's like when you finally come to the realization that your boyfriend is cheating on you. You know what you have to do. You aren't even angry because you've known for a while now. You are more afraid of all the changes it will cause.

Taking away something that makes your child happy is just heartbreaking. For moral support, I wrote my fellow yahoogroup folks and they all said to take it away. One asked, if I would give my diabetic child something that would shoot up his blood glucose level. Of course not, I thought, but still, I'm allowed to mourn, right? The food you see in the picture in still in my refrigerator. I am too heartbroken to throw it away.

I do have some good news to report. I took the food away a few days ago and the old Logan is coming back. It's not a clear-cut change but he's definitely moving in the right direction. Wish us luck!

Thursday, March 12, 2009

Homework from the Therapist, Ugh!















While I plan on seeing my therapist every week, I don't plan on boring you with the details each time but last night was so funny (and not) that I had to share it with you.

I finally found some of my years-old cosmetics. I put some on because my therapist said he would teach me a relaxation exercise and I wanted to record myself doing it and then show you all in case you wanted to try it at home. Of course, the make-up was for my very sad attempt to look decent. I didn't even have eyeliner so I used my eyebrow liner on my eyelid. That actually hurt! Could I be more pathetic?

My poor therapist. Every time I come to his office, I show up with a camera. He must think I'm really weird but then why else would I be there, right?

But here is the funny part, we decided to try a test run with the relaxation exercise and then record it. It was supposed to be very simple. So there I was, sitting on the couch, my hands on my lap, and I closed my eyes. Then my therapist said to me something to the effect of "relax, forget your stresses, your competition, your fears..." and then the next thing you know, my hands are no longer on my lap and instead I am clenching my knees, thinking of all my stresses, competition, and fears! I opened my eyes instantly. I don't remember what I said but it was quite apparent that the exercise was a total disaster.

So we talked about why it didn't work and what was on my mind. We talked about my medication not working and my relations with my husband and delved deeper into his upbringing and mine. We talked about how I tried to improve relations with my husband and how it didn't work. I was impressed that he didn't make my husband the villain. He touched over how my anxieties might affect how I interact with him (I guess as a spouse and parent).

One other important thing I discussed with him was about how hard it was to be the kind of parent our children's therapists want us to be: even-keeled, show no emotion (especially to toddlers), consistent, follow-through, don't make empty threats, and of course we are to never, ever yell. I told him how Klonopin really helped me be that kind of parent and how sad I was when it couldn't do that for me anymore.

We talked a lot and he then gave me some homework. One was to write a narrative on a stressful situation I had and how I dealt with it. I could just give him my entire blog. The other was to do yoga every day. So wish me luck on my homework. As you can tell from the picture, (me doing yoga from watching a video) you will know where I will be most pathetic. Gosh, I really look very fat too. Yuck! One piece of advice if I may: if you are learning by yourself at home then try filming yourself doing the exercises. It is the best way to see if you are doing it right. I looked at the pictures of my positions versus what I saw on the screen and saw how I was doing them all wrong.

One important note: Kai asked me how it went after I came back from my session and I felt really weird. I didn't know how to respond. I asked him if he wanted to know what I said and he said I didn't have to tell him but then I do want him to know some things. It's weird but I am going to have to figure out a more productive way to talk about my therapy so that it might help the both of us.

Tuesday, March 10, 2009

Are Our Marriages Doomed?














While Can Mom Be Calm was choosing the winners of the marriage advice contest, a health writer who writes frequently about neuroscience at The Washington Post was writing a story about how marriages are challenged by ADHD. I can't believe I didn't see this story for a whole week. (To read the article, you might have to register. It's easy)

I wanted to point it out just in case you didn't see it too. Shankar Vedantam, the writer, pointed out an older study that was already mentioned in this blog but he added new information that the authors of the study did to figure out how ADHD children can cause problems between a couple.

For example, according to his article, they found that dealing with ADHD children influenced the likelihood for parents of ADHD children to consume alcohol after a comparison project where they put parents who had to spend time with children who weren't their own and were trained to behave cooperatively and then another group of parents were placed with children trained to act as if they had ADHD. When given a break, the parents were offered alcohol to drink and then sent back to the same child. The results of this study were that the parents who were placed with the ADHD-like children drank 40% more alcohol. Are you surprised? We are all not surprised, are we. I am wondering why it's not 60%.

The researchers also worked on another study that compared parents who had to work with difficult children and parents who worked with more cooperative children. The parents who worked with the more difficult children were four times more likely to exchange negative criticism and questions between each other and also to ignore each other more than the group of parents with cooperative children.

AAAAAAAAAAAAAAAAAHHHHHHHHHHHHHHHHHH!

I feel like calling my husband and asking him to never turn into a jerk and to always love me forever. Do you think it will help? All I can say is that we are totally guilty of the things mentioned above.

Either way, I am glad this story was written. One of the most important services I receive through Early Intervention for my youngest is my social worker who comes to our home twice a month. She talks to us about everything including marriage, discipline, education for Logan, and my emotional health. Hopefully as Mr. Vedantam and other reporters brings light to these studies, the insurance companies, the government and schools can see that giving a family as much support as possible is necessary to help the child.

I always feel like ADHD is a disability with its own disability. No one can see it. Lots of people think you are making it up especially when your kid is having a good day. It's certainly not like he's on crutches. Although he does need the crutches in his brain, so to speak. And so many of them are bright so even the parent (especially me) forgets why their child will not comply and gets lost in frustration.

Let's hope these studies all help us learn how to become closer to and work better with our spouses.

Here is another link to a follow-up "Your Views" article. I know it's a little late but I would still go ahead and write your comments to the article so the paper has an idea just how important this topic really is.

(Pictured: Kai and I at our wedding banquet. Gosh, remember when your biggest problem was seating charts and making sure your mother-in-law didn't takeover everything?)

Sunday, March 8, 2009

Cynthia Nixon As an ADHD Mom? Got Coupons!

















I really couldn't believe my eyes when I read it in one of my favorite blogs, Well, by Tara Parker-Pope. Cynthia Nixon, star of Sex and the City, was headlining in a new Off-Broadway comedy called Distracted, a story about a mother raising a child with ADD.

The story was written by a playwright and mother, Lisa Loomer, who noticed that more and more children were being diagnosed with ADD and other disorders after she enrolled her child in school. The play is more about the mother (Cynthia Nixon) and her journey to cope and learn more about ADD and is less about the child. I already bought tickets! I know we are trying to save money but my birthday is coming up and we had this coupon. How can I miss a play about someone who playing "my role," so to speak. Thank you Emily for this coupon!!!!!! I'm so sorry to all of you who live far away and can't see it.

While I don't want to devalue the subject of ADD, I wondered why someone who didn't have an ADD child would write a fictional play about raising an ADD child. It doesn't seem to be the subject of too many fiction books as far as I could tell from a quick amazon search. The writer talks more about her motivation to write the play in this article. Either way, I am grateful that not only is she giving ADHD attention, but she's laying the focus on the mom. We (and the dads too somewhat) are the ones going through a lot of changes as we learn to help our children. I really wonder how I'll feel after I see it. It's supposed to be a comedy so I just hope I'll have a great time.

You can get tickets by going to www.roundabouttheater.org or calling 212-719-1300 and my friend sent me a coupon code (DIPBOL2) which takes about 40% off the ticket price. I think the show will stop playing in May.

Friday, March 6, 2009

Finally on the Couch!


I have to say there is a part of me that hates complex rules and procedures. You can call it ADHD, whatever.... Before Tivo, I never programmed my VCR, I have never done my own taxes, and hated deciding on my benefits plan each year. I also really hate dealing with my health insurance company. I ask them to repeat whatever they said to me two or three times and sometimes, I still don't understand what they are saying to me. I am much better at reading a child discipline book and making charts for behavior and points. These things are much easier for me.

So here is the deal. I have been complaining that I couldn't get psychotherapy because I had to pay a big deductible and then have to pay a large co-insurance but apparently an "in-network" deductible is different from an "out-of-network" deductible. I am used to the latter because of my DAN! doctors but I just assumed that when they said "deductible," I was responsible for a lot more money than I really was.

I have a smart social worker friend who told me to call my insurance company and look for more options despite my deductible issues. So I called them and they said, "Uh, you have already met your deductible to seek in-network mental health treatment. You just need to pay your co-insurance now."

I asked them when I had met this deductible and they did not know so I have no idea how long I had pointlessly let myself suffer in the name of "saving money."

Anyway, since I already had one therapist in mind who was in the neighborhood and did night appointments, I called him right away and saw him this week!

Wow! I was so excited. I wasn't sure what to expect. The last time I talked to a psychologist was in college when I had a not-so-nice boyfriend who was making me crazy. I didn't have too many sessions with her but I remembered feeling good every time after I talked to her.

The therapist asked me a lot of questions and of course, I talked about my kids. How can I not when I am talking about what is stressing me out? However, I think we'll have to figure out how to talk about them while focusing on me. Anyway, I enjoyed my first session and I'm going to go back. He's also going to help me find someone who can prescribe better meds for me. He told me that some people actually abuse Klonopin. It's hard to believe that since I feel like a Mentos would do more for me at this point. This is truly sad for me. Did you know that the first post in this blog was about Klonopin and how much it helped me?

Anyway, I hope my therapist can help me learn to relax. Even if he can't, I think it is nice to be able to talk to someone outside of my "network" about my life, especially during this difficult time. I feel like I've only been a special needs parent for just about two years and still am trying to get used to it. I wonder if I will ever get "used to it."

That thought sounds kind of silly now that I think about it. It sounds like I still haven't fully let it sink in that my child is different. I get very frustrated when I see other parents in denial about their kids and yet now I'm thinking maybe I'm just in a different milder state of denial. Could that be causing my anxiety? Okay, I'm going off the deep end. Time to hit the sack.

(Pictured: My first day sitting on the couch at my therapist's office! I'm such a geek. I even brought my own coffee just so I could enjoy myself more.)

Wednesday, March 4, 2009

Married with Special Needs Children- The Winners!

Here were three contributions that really touched my heart.

To the first "Anonymous" (who did send me an email so that I know where to send the book). I am so glad that your husband came back this week and that I hope the week away from you did you all some good. I can't imagine spending one day without my husband but I am not sure if that is necessarily a good thing either. You sound like you have some tools you can use to improve your marriage but you also sounded like you could really use this book. I truly wish you and your family the best.

Here is what "Anonymous" said:
My husband left about a week ago and just came back yesterday. All I can say is that intimacy has to be maintained. If you lose that, you lose communication and become strangers, roommates. We both have a lot of work to do to accomplish this. Also, you need time apart with friends, to get the lead out so that you don't take your anxiety and frustrations out on each other, and to find things to talk about about other than your child. I have been guilty of that because I have been home handling all her stuff, like a lot of moms. Also, look at your wedding album and write a list of why you married your spouse in the first place. Sometimes we forget!!!
To Barb: How wise you are. I really loved what you had to say. So did Manuela227! You are so right, we all need to be happy with ourselves first. I will also try very very very hard to listen to your advice about "listening more than directing." So often we are "directing" our husbands because the purposely or unintentionally avoid getting involved in the plans that we orchestrate for our children. Here is what Barb said:
After having been married for 20 years, I found out that marriage is constantly in a state of evolving. I think the first ten years were about learning how to be married. That meant, for me, that I am still ME and don't have to "morph" into this totally different person. Neither does my husband. However, the secret to being able to remain ourselves and yet married is to compromise! Listen more than directing. Realize that the only person we can control AND change as needed is ourselves. So when things are not going so swell, that is the time that I look @ myself and figure out how **I** can become happier with MYSELF.

That leads me to the 2nd important thing. Realize that your happiness has to come from yourself..... not your spouse. We have to be happy with who we are.
Here is the last great piece of advice from someone "Anonymous" who stayed anonymous. I only had two copies to give away anyway but might get a third one. Either way, thank you Anonymous for sharing your wonderful thoughts. It seems like you easily recognize others' differences and probably have great leadership skills: (I abridged this one a bit to highlight the most important parts)
I think that the most important lesson that I learned is that my husband and I think differently. I have a tendency to lay all the cards on the table, accept the situation and try to move forward with a decision. My husband, on the other hand, can not make a decision as decisively as I can. He needs a few days to think about, mull it over and slowly come to a decision. Initially, this was driving me crazy until I realized that he was not trying to upset me deliberately but rather this is the approach he needs to take. Once I had that revelation, communicating with him became easier. I guess I needed to put as much effort to understanding my husband as much as I was putting into understanding my son's issues.
Thank you all who contributed your words of wisdom. If you would like to place more advice, please place it in the original post because the link to that post would be very accessible on the right side of the home page.

Congratulations to the winners and thank you Dr. Marshak for sending and writing these books!

(photo courtesy of Woodbine House)

Sunday, March 1, 2009

We Finally Went Out on a Real Date!





















It was Kai's birthday and we used it as an excuse to finally get out.

This isn't our first date this year and I am including the year 2008. We did have my brother and his fiance babysit once a couple of months ago but for some reason, we were really not used to going out that we just went to a restaurant in the neighborhood and saw a movie in a really old awful theater a few blocks away.

This time, we decided to really have a date. We hired a babysitter and we made reservations at one of the best steakhouses in New York City. Kai loves a good steak.

Can I tell you something embarrassing? Since Kai goes to work everyday, he wasn't as shell shocked as I was to be "out." I go to playgrounds, health food markets, and visit special ed schools. That is my life. I knew I was in trouble when I realized that the closest thing I had to make-up were Crayola markers. I no longer own any lipstick or eyeliner! I have no idea where I put them and how old they must be.

I was even more "in the woods" when I got to the restaurant. I am not used to bread on the table with rich butter in a small ramekin with a little piece of wax paper on top. I am not used to waiters, wine lists, raw oysters, and most of all, bathroom attendants.

I went to the bathroom without my purse and I felt so bad. I couldn't give her a tip. She did her job anyway and I even told her (and I swear I wasn't drunk at the time) "It's my husband's birthday, we haven't gone out in 4 years. I am not used to anyone else being in the bathroom. I'm so sorry I didn't bring my purse" She must have thought I was the biggest loser.

Of course when the food came, I was even more "uncool." Ever bite I took was followed with "Wow, oh my God. This is sooooooooo good. Umm Umm Umm, I am dying!" I was even snapping pictures of Kai while he was taking bites of bread. (One for the blog, I thought?) Kai was very embarrassed and told me to put the camera away when our appetizer came. I apologized to the table next to me for the flash constantly going off but they were nice about it and actually offered to take a picture of us.

When we left, I gave Kai my bag and coat and ran to the bathroom to do my "just-in-case" pee and then there she was again - the bathroom attendant! Again, I was without wallet and so embarrassed. I apologized, did my thing, and then went back to Kai, got some money and walked back across the huge restaurant to give this nice woman her tip. I just need to get out more often so this won't happen anymore.

My favorite part of the evening? Kai and I went for a walk and we talked. It was hard to talk in the restaurant with me acting like a nut who had been locked up in a cage but walking in the street.... I can do walking in the street. We walked around downtown Manhattan and joked and laughed a lot before we went home. We almost saw a movie- Slumdog Millionaire. However, if we saw it, we would have gotten home so late and been so tired in the morning. It would have almost been as bad as taking care of the kids in the morning when you're hungover. The truth is, if you really want a big night out with your spouse, you need a babysitter in the morning too.

Someday.... someday.....

(Pictured above: Kai and I at a real restaurant on a real date. I need to see the pictures to believe I was actually there. Pictured below: Kai and the kids blow out a candle on GFCF carob cupcakes. Spencer is crazy about carob cupcakes.)

(Note: for those of you who noticed, this post was reposted with some adjustments.)