Sunday, May 31, 2009
There is a saying in the PR business; "the story's got legs." It means what it sounds like it means; the story can not be stopped and keeps multiplying its exposure in the media. So the last thing you want to do if it's an unwanted story is to feed the fire and personally, I am very sad about what is happening to the Gosselin family and refused to be one of the people talking about them. But, I just can't hold it in anymore. RAHHHHHH.
Okay, breathe.... here we go: A few days ago, the first episode of the new season of Jon and Kate plus 8 aired and we watched it. It was just so awful to look at the pain in their faces that I decided not to watch this show anymore, at least for a while.
This show is one of the few shows my husband and I watched together. Why? This family members' personalities are interesting and more importantly, while their children don't seem to have any particular special need, they obviously do have special needs being a large family of multiples. Special needs, whatever they are, my family can relate!
This show is just so sad to me now and I just can't be around sadness without purpose, ya know? It's not because I am the kind of person that is only here for you during the good times but it's because I am a viewer and not a friend. Friends don't watch friends suffer and not do anything and so since I can't do anything, I can't bear to watch anymore. I have however, decided to leave a comment on Kate's blog as I think I've heard her say that she reads all her emails. I don't have as many as she does but all of the comments left on this blog are important to me so I left her one. I hope it gets approved by the screeners.
Anyway, I want to just say, I have tried extremely hard not to pay any attention to the gossip or so-called-news regarding the show. It's just plain yucky at this point.
What is also yucky is that the show is still on the air. Perhaps it's a contract thing or financial thing or a poor judgment thing or a whatever-this-can-be-good thing. I am gathering that the parents are doing what they think is best- I can't question them because I am not in their shoes. But one still has to at least ask: is it okay to be on a reality show when you have children involved in a painful process? I suppose everyone will differ with this answer.
I question myself in this issue too since you wouldn't be reading this blog if my children didn't have challenges with initials (ADHD, SPD, PDD-NOS, ??D). I don't have many answers with regards to how much reality is okay when your own family is the subject except to say that I would hope that Logan and Spencer will understand why I needed to share my thoughts at this stage in our lives. I hope they will think that it was a good choice and will be content that it might have comforted another family going through the same issue.
Sharing your life publicly has been great for me but even this blogger doesn't feel like everything needs to be told. Jon and Kate plus 8 have given my family a lot and most recently, they have taught me how I need to be aware of boundaries as I write this blog. Believe me when I say that there were a couple of times where I had to go back to a post and delete a sentence here and there. Like young children, I can also say, "it's not easy to share." Thanks Jon and Kate, I learned a lot from you.
I pray that this special family will find the courage, hope, and strength to move forward to the next level that is right for them.
Picture: Here is something I hope Logan will be okay with: Logan hung from this "thing" (don't know what to call it) for several seconds which is a big accomplishment for him since he has low tone in his upper trunk. I'm proud of you little man!
Friday, May 29, 2009
That was months ago and now Kay sent me a note about about a very special event and she'd like you all to join in:
May 30th marks the first anniversary of my ADHD parenting blog, "My Picture-Perfect Family", @ ADDitudeMag.com. When I started this gig, I was afraid I'd run out of topics to write about. Was I naive? Was that wishful thinking? I should have known that with Natalie around, the ADHD-fueled excitement never ends!
I didn't expect to find so much to write about, and I didn't expect to feel so supported; to feel a sense of community. I didn't expect to learn so much--about myself, about Natalie, about ADHD. I found all of those things--information, support, and community--at ADDitudeMag.com. I hope my readers do too.
To celebrate and further foster the development of our ADDitude community, ADDitude is offering to a couple of winners (randomly chosen) from those who post a comment to my Blog-iversary blog entry by May 31, their choice of:
- a free one-year subscription to ADDitude magazine
- a free copy of ADDitude's ADHD Treatment e-book
- a free copy of ADDitude's ADHD at School e-book
Sketch: Kay Marner communes with her computer as a way of coping with the stress of parenting a child with ADHD. Through her ADHD parenting blog, My Picture Perfect Family, at ADDitudeMag.com, Kay shares support and information with a community of parents who understand what life is like with a special needs child.
Picture: Natalie Marner, age 8, has ADHD and Sensory Processing Disroder, and loves the sensory experience of playing in dirt or sand. Here she is digging in her garden, Memorial Day weekend, 2009.
Thursday, May 28, 2009
For example, when I complained about Logan's poor feeding habits, she said, "Don't worry. My son took two months to get back to his birth weight and now he's the tallest in his class."
When I complained of how Logan was hitting other kids in preschool, she said, "That's nothing. My daughter bit the other kids. She's fine now."
But my kid is not fine now! He has serious issues and we missed them all during a time he could have had early intervention therapy. After a long period of blaming me for his behavior, she finally sent me to see a specialist and then after having him evaluated, we found he had multiple delays and issues. I brought the results to her but she never once apologized to me for missing the signs.
My youngest son, Spencer, now 2, has a great team of therapists treating him and coincidentally, three of them have boys around the same age as him. At first I thought this was a great plus but then I started hearing similar refrains that my former pediatrician used often. The therapists would say things like, "Oh my son does that all the time," or "he's just being a typical 2-year-old. What I did was....." When I heard them say this, I slightly cringed because I felt that they shouldn't be comparing my special needs child to their typical children. Then I wondered if therapists were more effective if they themselves had children or if the opposite was true.
I asked a bunch of parents online what their thoughts were and most said they preferred therapists who had children of their own. Some felt that therapists who have children can definitely empathize with the emotional and real-life challenges that you have as a parent. Debbie from Ottawa, a parent of 2 special needs kids, who is also an ABA therapist said that one advantage was that she knew all the kids' favorite shows, movies, and songs that therapists without kids would have to learn while at work. I definitely see that the therapists with young children know all of Spencer's favorite songs by heart and he loves that. On the flip side, one mom felt that a therapist without children could be more objective and I could see that too.
For me, I think I've learned just one lesson from my former pediatrician. That is, I have to listen to my gut even if my gut is telling me bad news. This is why I have decided that the best way to help my kids is to have up-to-the-minute knowledge on their progress and challenge the therapists' opinions when I think I'm right.
For me, this is hard to do because I hate confrontations but on occasion, I have forced myself to say things like, "I understand that it's typical 2-year-old behavior but I'm concerned that he might not grow out of it like other kids do because of Logan's history." It feels weird challenging people who know much more about child development than I do. However, while I'm still responsible for my two little guys, I will have to trust my gut and have the courage to speak out when it's necessary.
Picture: Susanna Siles, one of my son's ABA therapists and mother of a teenager feels that it doesn't matter if a therapist has a child or not. A good therapist will know how to work with all different types of children AND their parents to produce the best outcomes for the children.
Wednesday, May 27, 2009
I'm sure ALL of you would agree; raising children with special needs can be awfully expensive. In fact, I found a research study that confirmed it. Paul Shattuck, an Associate Professor of Social Work at Washington University in St. Louis said in this video that the cost of caring for a child with special needs is three or maybe four times higher than for a child without special needs.
You know it's true but it still hurts that someone says it out loud. It especially stings me since I'm not earning any money at all. I haven't even put any ads on this blog.
Anyway, let's be depressed together, shall we? Does your list look like mine?
Things that I bought and still spend money on to help my children get better:
- compression vest
- fidgety seat thing
- doctors who don't take insurance including my DAN!
- costly supplements and vitamins (not the kind you get at your local pharmacy)
- my blackberry- yes, this is for them too!
- Kirk Martin CDs
- mental health treatment for me (this helps the kids too)
- new stainless steel cookware, supposed to be the least toxic but of course is most expensive
- educational costs
- food shopping for special diets (if I wrote down how much I spend, your computer would even gasp)
- organic meats and veggies (so sad that I can't go all organic)
- a HEPA filter
- moving to a bigger apartment
- listening therapy equipment
- yoga lessons for Logan (possibly private since he has a hard time in a non-special ed setting)
- cranial sacral therapy
- music class for Spencer, gymboree class for Spencer (want to see him in a class with typical kids too)
- more acupuncture visits for me (had to quit for awhile)
- babysitting for me just to go work out!
- memberships to professional organizations for my dormant career
- a new table for my kids- the old one has paint rubbing off even when I am just wiping with a baby wipe!!!!!
Additionally, here's another high-cost-of-special-needs- story in The New York Times which actually features my friend and special needs mom "mentor." The story discussed financial hardships caused in pursuit of providing an appropriate education for their child.
It gets depressing sometimes but I figured out the best thing I could do is to start preparing myself to re-enter the workforce. I'm not wholly sure of what I'll do but I really hope that it will have something to do with the theme of this blog.
Picture: Both of my kids use this table everyday. Logan eats off of it and Spencer works on it with his therapists and eats off of it too. I called the company and they said it was safe but it still makes me crazy. I don't care. I'm buying a new table soon.
Tuesday, May 26, 2009
A few months ago, I posted a coupon code for an off-Broadway play starring Cynthia Nixon about a mother who goes through a journey discovering her child has ADHD and then trying to help him. The play is fictional and written by Lisa Loomer.
As soon as I got the coupon code, I forgot I was trying to save money and thought that I deserved to see "my life" being played on stage for my birthday. Unfortunately, the many of the good seats were taken until the 2nd to last week of the production.
I had no idea what to expect but all I can tell you is that I laughed and laughed. Watching this mother deal with the same crazy things I went through: psychologists making you feel small, teachers complaining, alternative and expensive methods of healing, imperfect ADHD meds, marital discord, losing my temper on my child, going to Whole Foods and spending tons of money.....etc. She did all those things and I was glad I was able to laugh about it. The audience did the same.
I think it is hard to find fictional literature, music, or visual art that is about living with ADHD. However, don't you think living with ADHD, autism, or any other special needs can be art? I know you might want to punch me right now but in a way, doesn't art depict scenes of joy, suffering, and transformation? Forrest Gump comes to mind.
After seeing the play, I felt inspired about raising my children. Perhaps, that is the power of fiction. It can move us to a degree that is unmatched by any non-fiction ADHD info book for parents. Hopefully I'll find more artwork that features families living with special needs children.
The show is no longer playing so I guess I can give you the ending which was that the mom and dad, after all that they went through, took a breather just to enjoy their son and see that he really was a great kid. I loved this ending because that is what happens in our home sometimes after a really bad day. A friend of mine disliked the ending and said the mother character was trivializing ADHD and the meds issue was horribly mischaracterized. With that said, she, like me, loved the play. I wish you could have seen it too.
Picture: Logan draws a picture of Mommy during the time I breastfed Spencer. Now that's art!
Monday, May 25, 2009
Veteran moms and moms who get the discipline thing early probably know what I'm going to say.
"Operation Self-Esteem" where I decided to concentrate on building Logan's self-esteem by consistently praising him everyday for a week did not produce the miraculous results for which I had hoped. I saw very little change in our relationship and in his behavior. However, I think I know why it went wrong. It boils down to just two things.
Consistency: Operation Self-Esteem was not successful because it was a temporary operation. It didn't work because no matter how often you praise your child, you are just not going to see big results in just a week. It takes longer to build self-esteem. I'm in my late thirties and I'm still working on it. Look at me getting insecure about a bake sale. Could I be more ridiculous?
Sincerity: This is hard to say but sometimes I really am forcing myself to praise him. I have a feeling that kids can pick up on this. I know they do like it but I think that real praise must really come from the heart. It just can't be some exercise to improve behavior. I don't think it works that way.
For example, if Logan plays quietly for thirty minutes in his room, I will praise him for it. However, I can be most sincere and most effective if I truly believe that this is hard for him. This means that I must fully accept his disabilities. You'd think I have already. I even have a whole blog about it but when you have a kid that can be so bright sometimes, it's so easy for even me, his own mother, to forget that he has some very serious challenges. Perhaps, this is the biggest lesson I learned this week. I really have to know what is truly difficult for him so that I can help him learn to overcome it.
Picture: This is Logan's "cool trick" inspired by the show "Yo Gabba Gabba." This one is easy to praise.
Sunday, May 24, 2009
I helped out with a bake sale because I'm a member of a private park. It's not a fancy park with trimmed hedges and perfectly mowed lawns. The park is comfy park for your average Joe and is run mostly by volunteers who want to provide a safe place for their kids to play. To me, a mom of special needs kids, the park is indispensable because members are understanding and the enclosed area offers extra safety for my two wandering boys.
This weekend, our park held a fund-raising Memorial Day fair and volunteers were encouraged to make baked goods for sale. Bakers can use this contribution to fulfill their mandatory volunteer hours. I offered to make GFCF (and everything-F) cupcakes and the director told me that I'd get double the hours since I was using more expensive ingredients. Hooray.
I was so happy and then I thought, would anyone really want a GFCF cupcake? Possibly not, after all, no butter+no egg+no chocolate+ something obscure-sounding like sorghum may = no flavor, right? Even though I still get my volunteer hours done whether they sell or not, my pride was on the line. I decided to make a pretty card that advertised how the cupcakes were all-natural and made with organic sugar, ground flax seeds and had no preservatives. Buzzwords for healthy, right? Maybe, then, it would have a chance.
When I got to the fair to drop off my cupcakes, my heart sank. At the bake sale table, there was a sea of beautiful cupcakes, some were glazed like Krispy Kreme donuts and some were covered with eye-catching multi-colored sprinkles. I wonder how my kids feel when they see desserts like this. I also wonder if other bake sale moms feel like when they see cupcakes that are prettier than theirs. They probably don't care, I'm probably the only one whose self-esteem hangs on the sale of her cupcakes.
Of course, my cupcakes were the only ones with a sign to explain themselves, but to my surprise, they turned out to be a hit! One woman bought six in a single purchase! Celiac sufferers came up to me to thank me. Others came over to offer their praises. It seemed like there was someone avoiding something ranging from anything from dairy to refined sugar and even chocolate. It didn't even matter that my cakes were being sold at twice the price of the other cupcakes. They were sold out! Hooray!
I think my favorite part of this was having Logan and even Spencer, help me a bit with the cupcakes. It was fun for all of us and I practiced calming down and enjoying their company. Additionally, Logan has started to learn what volunteering is. He told me that when he grows up, he wants to be a volunteer. I have a feeling that he is going to be helping lots of people some day. I think that will make him happy.
Picture: my cupcakes with its little "What am I" sign with a list of ingredients (I forgot to write organic expeller-pressed palm fruit oil- whoops). I think the sign made them stand out from the crowd. These are carob cupcakes with vanilla frosting topped with India Tree sugar crystals colored with vegetable dye. (GFCFSFEF.....F...F....F)
Saturday, May 23, 2009
"That's right, just one, so if Mommy and Daddy dies, there is just you and him. You have to share and be good to each other. "
When I was young, my parents struggled to provide for us. I had only one Barbie doll and my brother didn't have much either. So naturally, we had to share everything. Moreover, since I was the youngest, he always had to give in to me. He was also admonished for not being a good model on the days he goofed off. The flip side was he got a lot more attention than I did. He was the oldest and he was a boy child. He was also the only child in my entire family (cousins and all) that was supposed to carry the family name so he always got the fattest envelopes (of cash) on New Year's Day. This was the mindset of a typical Korean American family in the 70s.
It's funny because it's 2009 and I still do a lot of what my parents did back . I want the boys to share everything. I want Logan to give in to his little brother and I demand that he be a good model to him. I also spend a lot more time on him because I frequently screw up whatever I'm trying to do with him.
I've become my mother. Oh well, I like my mother but I know that these values to which I'm adhering is not necessarily working for our family. For example, sharing certain things makes Logan crazy. He gives into his little brother a lot but he doesn't like it when Spencer messes up his Geotrax system which takes a long time to build.
I never respected that he had ownership over anything. Even when he earned it through the quarter system that I designed! My husband told me that I should not force him to share everything. I reluctantly agreed. With ownership, he may act more responsibly.
So finally, I took all of Spencer's toys out of Logan's room and told him that he doesn't have to share anything in his room but that everything in the living room belongs to Spencer and if he brings something into the living room, it must be shared. (Spencer doesn't have his own room and still sleeps in my bedroom.)
Logan seemed happy about that and then he played quietly in his room for a long time. That usually doesn't happen. Also unusual was him cleaning up his room. I was really surprised. I guess giving them ownership can have good results. I now am very very very close to accepting that he would be willing to give in to his brother and share with him voluntarily instead of forcing him to do it like I do now. Given his calmness and cleaning up on his own, I think we are headed in the right direction.
My dear sweet Logan, you are more my teacher than I am yours.
Picture: I think the clearing some of the clutter out of his room relaxed him. He seemed to no longer be anxious (or paranoid) that Spencer would come and destroy his elaborate train system.
Friday, May 22, 2009
- no help with kids during dinner
- no help with dishes
- DARED to complain about the mess in the house, bathtub rings, dirty stovetops.....
- put one of the kids to sleep (at least that, right?)
- poor at discipline, his specialty was making empty threats
- never picked up one ADHD parenting book
- refused to deal with school stuff and left everything up to me
- rarely bought anything for himself
- was quiet all the time, we didn't talk much
- tuned me out when I tried to talk to him about parenting techniques or anything else
- eats dinner right next to Logan and encourages him to eat his food
- puts both kids to bed while I relax and take time to eat my dinner and wash the dishes (in peace)
- bought a copy of The Explosive Child and read it
- agreed to buy Kirk Martin CDs and has listened to them more than me
- talks to me more
- doesn't get mad when I lose things
- finally bought himself some new clothes
- gives me parenting advice - can you believe that?
- makes a spreadsheet how to react to different bad behaviors so that we can be on the same page when we deal with Logan - yes, it's really true, there is no typo
- made a shopping list for a pending trip to BJ's! unprecendented, unprecendented!
- looked at a new restaurant that opened near his father's apartment and said we should leave the kids with his father and go have brunch there (I think I fell to the ground)
But I kept badgering him because I really wanted to know. Maybe I could find out some secret recipe for spouse-improvement and share it with you all. However, he just basically told me that he realized that he was not responsible for my actions (like losing everything) and that he was only responsible for his own actions. Then he started to change the way he did things. Kirk Martin advises the same thing in his marriage CDs but Kai made these changes way before we bought them.
I guess I've been doing the same thing in a way. I've started this blog. I've bought myself a few things. I wash my face in the morning now and even try to wear makeup everyday. I use the dishwasher more often and without guilt. I've also gotten more serious about getting help for my anxiety. Furthermore, I've been thinking about the future of my career. This includes daring to let my life revolve me and not my kids. I know I'm not there yet but the idea still lives on in my head. I can do this. I know I can.
For the record, Kai and I don't have the perfect marriage. However, I'm really proud of him these days. Rather than being chicken and not rocking the boat, I tried to reinforce the improvement by telling him that I see the changes he's making and that I appreciate them. I said it verbally and I also said it via email. You could say that I'm using ABA on my husband, I think you'd be right (But it's all out of love.) I hope it works because he's been really great these days!
Picture: It's a little hard to see but it's a spreadsheet outlining how we are supposed to handle certain situations in accordance with the approach used in Explosive Child. This was his idea and he made this all by himself. I was floored.
Thursday, May 21, 2009
With two special needs kids, you think you have been through it all but sometimes, I feel like I know nothing.
Last week, I made an appointment for Logan for a dental check-up and decided to have Spencer checked as well. He's only 2 but he does eat cupcakes and cookies and ice cream (still all free of egg, gluten, soy, and dairy) so I decided to give it a shot. Given Logan's first experience and their similar oral/facial defensiveness, I knew Spencer would likely be hysterical. Logan was so terrible on his first time, all the dentist could do was look inside and that took over half an hour. He couldn't even clean his teeth.
I told my occupational therapist about Spencer's dental visit about three days prior to our appointment and the first thing he asked was, "Did you tell Spencer that he was going to the dentist?" I bowed my head in shame.
I am so bad at this. I know my kids are anxious, impulsive, and afraid of new surroundings. Spencer is especially afraid of medical environments but do you think I would have mentioned our pending dental visit to Spencer? Why would I do something smart like that?
Again, his therapists saved the day. I had some scrubs from my old days at the hospital and also had one of those swine flu masks in the house. We had a high chair that we could tilt and thus we played 'pretend dentist' as least 2-3 times a day. It wasn't an ideal way to prepare him but we worked with what we had.
Without the therapists' ideas and help, I would have probably just taken Spencer to the dentist and he would figure out what was happening when the got into the treatment room. I can be really stupid sometimes. Why do I keep forgetting that preparing kids in advance is one of the top ten rules for many kids with special needs, especially kids with ADHD.
On top of the pretend play, we had Logan, who used to fight the dentist with all his might. Now he's really good about it and was a great model for Spencer when we finally made our way to the dentist's chair. When it came time for Spencer's turn, he cried but he let the dentist work on him. It was a miracle, courtesy of his therapists and his big brother.
Big brothers can be such great models. I even credit him (and chocolate) for teaching Spencer how to pee in the potty. I had been trying for weeks but he would just sit there and not do anything. Finally, I bought some chocolate covered sunflower seeds (like an m&m but without the nasty junk) and showed Spencer that Logan got the colorful "candy" right after he peed. The problem was that Spencer doesn't know what candy is so I gave Spencer one to try and his sensory-defensive mouth immediately spit it out. But then, I wish you were there to see his face. His facial expression changed from "yuck" to "uh, what was that?" Quickly, he picked up the bits off the floor and put them in his mouth. Within ten minutes he peed in the potty and got his candy and now he goes everyday. This just tells me that he knew what was going on for awhile now but he just needed some motivation and some time to put it all together.
It's so hard to talk to Spencer who can't say what he wants to tell you. Additionally, Logan can talk but his mind moves so fast, he often doesn't make any sense. As a result, I frequently act as if Spencer can't understand me but I have to remind myself that he can. That means I must tell him (and Logan) about where we're going, talk to him more, and elicit more speech from him because I think he is used to not using words to talk to me.
So basically, I've got communications issues with both of them. Maybe that is why they were born to me, a pr woman; we specialize in communicating and influencing minds. As you can see from my parking lot to notes next to the toilet, I'm pulling all my PR tricks out of my hat to get my message across. Irregardless, words or no words, Spencer peed in the potty and let the dentist finish his job. Spencer, you did it! Mama's so proud of your two major conquests and of your brother for leading the way!
Picture- top: You can't be a boy with ADHD unless you touch everything in the dentist's office including picking out a sterile cottonball from a jar, licking it and then putting it back in the jar. The beauty of ADHD.....
Picture- bottom: Spencer will now pee as little as two tablespoons, jump up and down and congratulate himself and then demand candy. I'm seeing him in a new light now. This kid is a lot smarter than I thought.
BTW, look at Spencer's hair, guess what is next? Oh, no!!!!!!!!
Wednesday, May 20, 2009
Now, I'm really mad.
The federal General Accounting Office (GAO), released a report yesterday on the widespread abuse of tactics used to discipline or restrain special needs students. One of the cases they will discuss will be that of a boy named Cedric Napolean from Texas who was killed in school while teachers were restraining him. Despite his pleas that he couldn't breathe, teachers ignored his protests. Soon Cedric was dead. A dozen of his classmates watched what happened.
Are our special needs children inmates or students? With discipline tactics like that, I don't know what to say except that what is happening in these schools is a great American shame. I am in tears.
I am mad at so many people. I am mad at the teachers for using these tactics on our kids but I'm even more mad at the school system for placing these students in such an inappropriate environment that the child's safety was at risk. Obviously, these teachers couldn't handle these children. I would hope that if it was me, I'd rather quit my job then go to work where I was so over-the-edge that I could actually inflict harm on a child. Really, one must question the difference between this type of teacher and a teacher who molests his student. Both are abusive and damage the child's ability to trust others as well as trust themselves.
This is why we must all advocate for the most appropriate educational setting for our children and then make sure that these people are educating and treating our child appropriately. Having to be restrained (until death) as a means of disciplining a child or being locked in a time-out space for hours means that the school and their staff are not equipped to teach nor care for such a child.
I remember I used to get calls almost everyday from Logan's first nursery school and then his second nursery school started doing the same thing. Finally, after a few months, the school reduced the number of hours he could stay in class. Soon after this decision was made, he bit a child really hard and then I took him out and never brought him back. It was clear to me that this school stressed him out. It was also around this time I sought an evaluation and found out he was very challenged and delayed.
Soon after that, when we sent him to a special ed school in a small self-contained class, everything changed. He was happy to go to school and it took a while but I was no longer afraid of my phone ringing. At a meeting where I was just going to ask the special ed school system for an increase in occupational therapy sessions, I had a new administrator and she said that he should be in an integrated class where half of the kids were typical. I was surprised but elated. My baby was getting better, I thought.
At first, when he went to the new school he started to improve but a few months later, his teacher told me that his behavior had regressed. He even chewed on playground mat rubber and dried up leaves at playground time. I could tell that things weren't going right but I had no idea that there would be better schools for him. Wouldn't someone from the school tell me if there were? Aren't they the experts? I thought that since he was in a good school, that they could help him to the extent that he could possibly be helped. WRONG! I was so clueless.
Within, special education, there are subspecialties too, as I finally learned. That school botched things up and never told me that they were thinking of asking him to leave. They finally told me that Logan had to go when it was the middle of the summer when all other special education placements in schools were filled. If they had told me earlier, I would have had a chance to visit other schools and possibly reserve a seat. But thanks to them, this was impossible. I always thought special ed schools would be understanding of special needs children and their families but I was wrong. They make mistakes too.
Even they told me very late, I am grateful that they finally came to the conclusion that they couldn't help him. Luckily, despite the poor timing, I found a seat for him in a good school that was suddenly was vacated by a child who moved. He has flourished in this school. His gifts are able to come out and he has really qualified people to help him work on the skills he lacks. This is what happens when children are placed in the right setting.
Sadly however, this new school was Logan's FIFTH preschool and he was only four years old at the time he started. The last three schools were special education placements. This means that he was "in the system" for only 1.3 years and already had been to three special ed pre-schools with none of the changes being initiated by me, the parent. This begs the question. Does anyone know what the hell they are doing? With Logan, I think the answer was NO.
The fact remains; a child is dead. It's time to wake up and start the shouting. I just went on Google News and the GAO report only caught the eye of just 17 media outlets. And only one of the top five newspaper outlets covered this story. Thank you USA Today and The Washington Post. The story of the swine flu causing two deaths, (tragic as it is) and hundreds of children sick in New York City created over 2,500 media placements, and perhaps did so daily. These don't include the worldwide swine flu stories which today made more than 4,700 placements. Believe me, it's not easy to talk about these things especially when schools are closing left and right in my city. But after hearing of this report, all I can ask myself is how many more of our children have to die before we get more than 17 journalists who care? Or more productively, how can we convince people that the problems of our children impact everyone's lives, special needs or not? Here's a quick and easy example: if ADHDers are prone to car accidents, wouldn't you want to somehow cure or prevent ADHD? After all, car accidents caused by ADHD drivers have the potential to kill people who don't have ADHD.
While I don't believe my child is at risk for death at school, we have to make sure that they aren't even taunted or treated unfairly by the teacher as described in the articles linked to this post. I am sure this could happen with some our Asperger's and ADHD kids who are in general education classrooms where they may not necessarily be restrained but they could be treated unfairly by the teacher who doesn't understand special needs children. Can you imagine if the one person that your child is supposed to trust in school is mean to him and even taunts him? Hmmmm, I wonder who the school bullies would pick as the ideal victim?
Photo: Logan on a school bus at a school trip with preschool #2. Because of his behavior, he was not allowed to go unless I came with him. At this school, there were many days when he was forced to work isolated from the other students. Most of the teachers were caring and tried their best with him but the school's high turnover brought in a teacher that was not so understanding. I could see the disdain in her face when she looked at Logan. The same week she began teaching there, he started biting other children when he had never done that before. Coincidence? I think not. Photo 2: Logan playing with a friend during a dance/music activity at his last preschool about 6-7 months before he was asked to leave.
P.S. If you are curious about your state's procedures, visit page 6 on the full report.
Monday, May 18, 2009
We received a lot of positive feedback from the last interview with Dr. Lucy Miller of the SPD Foundation. Last week, ADDitude Magazine's Parent Blogger, Kay Marner wrote about our recent article in her blog since so many children with ADHD have Sensory Processing Disorder as well.
When I think about my kids' sensory needs which is pretty much every day, I frequently go back to my conversation with Dr. Miller because she gave me such good advice about how to find a great occupational therapist (OT) but our conversation naturally flowed into something just as or even more important: what we can do as parents to help our child overcome their sensory issues.
I have talked to many parents about what they are required to do at home for any kind of therapy including OT, speech and physical therapy. Many feel that what therapists ask them to do at home is unrealistic, mostly because they have no time. I once met a parent who had three children, two of them living with autism. She said, "I'm not a therapist. I can't do what they ask me to do." I understand how she feels. First, I frequently feel overwhelmed by the kids' needs on an almost daily basis. Secondly, our children can pull our heartstrings or frustrate us with much more ease than they can with their therapists. So if Logan doesn't want to be brushed (Wilbarger protocol) or if Spencer doesn't want his teeth brushed, I may just rush through it or just not do it at all. I tell myself that I'm tired and I just don't need this today.
However, what do I need is good advice and information. With this, I can make my own decision as to how much I can comply with the "homework" that the therapists give me. There may be days or months that I have the spirit, patience, and energy to do all that they tell me to do. Thus, I need to surround myself with great advisers who have to push me a little so that my kids can receive more benefit beyond the treatment sessions.
Dr. Miller gave me three great tips, some stunning, on what parents can do to ensure productivity with therapy:
1. Parents must spend the same amount of time playing with their children as their children receive in occupational therapy. Huh? She let me digest that for a moment because she knew she was making my head spin. What she meant was if a child gets 3 thirty-minute sessions per week then the parent should, at the least, spend the same amount of time playing with their child. "Play with your child with the goal of increasing your child's joy in being with you because it will help them with their biggest challenge and that is social participation," Dr. Miller said. "If you can get your child playing, you are teaching them social/emotional skills. I actually prescribe parents to spend time playing with their kids." I know it sounds really sad but after a long day of carting them around to school and therapy clinics, or the park where you are always a bit worried that they'll get hurt or get into a scuffle, or the big challenge: food shopping, I must admit, I don't want to play with anyone. However, if I remember my goals then I must change how I do things and make this part of my daily schedule somehow. After all, this is why I am not pursuing my public relations career, right?
2. "Get your child moving," Dr. Miller also stressed. It doesn't matter if they are under-responsive or over-responsive to sensory input. Heavy work is a great activity for them. For example, an activity such as swimming can be very helpful for kids with sensory issues and results are maximized when foam boards are placed underneath the child to provide more resistance. I am now making Logan carry one or some of my shopping bags home or to the car and also try to carry the basket (pushing shopping carts causes trouble) around while we shop which is even harder. I know people are looking at me. Some say nice words and some look at me like I'm treating him like a slave. Whatever! What is most important is that because he has a job to do, I am never saying, "Logan don't touch that," "Logan don't go there," "Logan where are you?????????" Shopping is MUCH easier now.
3. What can a parent do if the number of OT sessions provided by the school or insurance companies are not enough? Dr. Miller says, "Whether it's insurance or an IEP, use the F-word and not the S-word." Huh? I was already focused on her every word and was she now cussing? No. The F-word is "function" and the S-word is "sensory." She sent me into a new state of awareness. The school system as well as insurance companies both do not believe they are obligated to treat sensory processing disorder. However, if you can prove that your child has limited function, then he or she should then qualify to receive occupational therapy and if the therapist has good SPD treatment skills then they will know what to do accordingly.
What a shocker. Here was this internationally-recognized SPD researcher telling me not to refer to my child's SPD but if you think about it, it's not hard to understand. With many of our children, sensory processing disorder is very real but we have to fight extra hard for treatment because it is not yet recognized as a legitimate disorder. Doesn't that make you mad? It is not even included in the American Psychiatric Association's Diagnostic and Statistics Manual (DSM-IV) and hence SPD does not receive proper recognition and at times, this lack of knowledge can cause misdiagnosis. And more importantly, insurance companies do not see the need to pay for SPD treatment. The next manual is due in 2012 and the foundation has an initiative that includes an online petition. Additionally, parents can support the funding of more research to further the cause.
I have already become more of a believer and I'm trying hard to listen to her advice. Last weekend, I took Spencer, hater of sand and grass to the local sandbox and he kept climbing on top of me as if there were lives snakes on the ground. We sat down and tried to play and I gently ignored his protests. Twenty minutes later, we were doing the Yo Gabba Gabba March song while jumping barefoot in the sand. Even more surprising, he played ring-around-the-rosie with me and another boy whose hand was covered in wet sand! I was exhausted after a while but the kids kept running after me. More! More! More!
But I stopped. I had to breathe and think about what I had just done:
1. Played with my child as Dr. Miller prescribed- check
2. Did therapy "homework" which is to keep exposing him to sand- check
The winning results:
1. Spencer's feet touched the sand for a day without words like "AHHH" or "OUCHIE" or real-live sobbing.
2. Spencer interactively played with another child other than his brother for the first time.
Picture above: When these two look at a pile of fresh laundry they act like they discovered a room full of cotton candy. They jump right in and soak up the good sensory input.
Saturday, May 16, 2009
When he got off the bus that day, the bus matron said that Logan said some bad words to her. They weren't curse words but they did include the words "Shut up." Unlike the occasional knee-jerk "sh"- word, I never use the words "shut-up" at all and I couldn't believe my little preschooler used it. Moreover, he used it on an adult!
He looked very frazzled when he got off the bus and I wondered if something upset him that day. He can become oppositional when he's frustrated. I asked him if anyone bothered him on the bus. Immediately, he told me that a boy on the bus was saying "bad words" to him. I didn't understand how this could happen because the he always told me that the bus matron doesn't allow them to talk on the bus. (How could she possibly prevent this?) Either way, I figure this boy was bothering him and he was likely lashing out at anyone with whom he felt comfortable. Either way, there was no excuse to say such words to anyone so he made a sorry card to the matron.
After the incident, I talked to him again about the boy and he actually said that this boy had said these things by accident. Perhaps he thinks that because this is how he makes sense of his own behavior? He also said that the boy is his friend sometimes. Huh??? I assured him that the bad words were no accident and that if this boy is mean to him all the time then he is not a friend at all. I told him what to say and what to do if this happened again. I am not really that worried about his safety for now because he's still in preschool and his activities are very well supervised. By the way, our baby is not necessarily a victim. I think he might be fighting back already. It's hard to tell because he still has trouble recounting events that happened to him.
I came up with "Operation Self-Esteem" because I've been listening to Kirk Martin's CDs and he's been inspiring me to do some different things that were similar to methods I've used in the past. That is, I'm going to compliment my kids more.
It seems a bit pathetic that I have to make a big deal about doing this. However, I really do forget to praise them especially during times of stress when it could be most helpful. Anyway, through "Operation Self-Esteem," I am going to help them feel good about themselves by putting words to label their good actions and validating their efforts. I have a feeling that this is the foundation to prevent bullying in school and in their relationships with others for the rest of their lives. How else could they defend themselves if they don't believe they deserve better treatment.
I don't think I'm wrong to be concerned about their self-esteem issues in their adult life especially since it's been reported workplace bullying has increased, even among women. It's also encouraging to hear that some teachers care to tackle this issue, like Amanda who responded to my recent blog post about bullying. I can use all the help I can get especially since my kids are not only minorities but also have special needs. In New York City, Asian American students were severely bullied and though the bullies even threw metal locks at them, teachers and staff turned a blind eye. This infuriates me.
So far, you might think I have a good idea but I think good ideas are nothing without good implementation. This is where the publicist in me comes out. I decided to draw little posters around my house to remind me to praise my children. I wrote the message out in pictures because I'll invite Logan to partially get in on the act if he becomes curious about my posters. For him, I'd tell him that it's good to say only nice words to others. Through this exercise, I hope he'll learn that it's more empowering to compliment people. I also wrote all the reminders in different color crayons so that it will catch my eye as well as Kai's. They were placed in different rooms where most of our activity occurs. Playtime, "eat time", bathtime.....
Within thirty minutes of starting "Operation Self-Esteem", I saw a change in Logan. Without being asked, he changed into his clothes from his pajamas and even laid out his pajamas neatly on his bed. I can't remember the last time he did this without being asked. In fact, I pretty much gave up on him doing it so the fact that he did this on his own left me feeling happily surprised.
"Operation Self-Esteem" is only a week-long effort for now because my husband and I need to see how well it works. The best way to do it is to carry it out for a short time and to really just work on this one tactic. I think it also puts less pressure on us to impose this rule on ourselves forever. I don't want to feel like a bad parent on the days I forget to follow this rule. I have to admit that I'm human and can be inconsistent. All I can do is try, right? Let's see how we do for the rest of the week. I'll be reporting the results on this blog so stay tuned.
Thursday, May 14, 2009
When I was younger, I used to be addicted to Korean soap operas. They are not like the never-ending soaps like General Hospital or the Young and the Restless (those are still running, right?). The Korean soaps I love are more like elongated, over-dramatized, and dissected versions of chic flicks like Sleepless in Seattle. As a soap opera, they have short life spans. Many don't run over a few months but if it's good, it will have the whole country and various parts of Asia, glued to their TVs for an hour each week.
I'm Korean American and Kai is Chinese American and we both can speak our parents' languages and so we have this part of us that we have in common but still are different. I always wanted to share my love of Korean soaps with him but could never find any with subtitles. I remember Kai had purchased Chinese soaps without subtitles and I was disappointed but I shouldn't have been. These can be really good and they just weren't available with English subtitles. It wasn't like he was excluding me on purpose.
But now we can finally indulge in this obsession together.
We have been watching a comedy/drama called Queen of Housewives every night for a few nights now and we have never gone to sleep before midnight. These shows are stored for long times in websites like www.mysoju.com and so we are able to watch many episodes back to back.
We are basically having fun together doing something that has nothing to do with the kids, is totally unproductive and a little detrimental (getting less sleep). It's like we are two teenagers sneaking cigarettes in the bathroom at school. I wonder how healthy this is. It doesn't really matter because we are so addicted. We have fun making fun of the show as we watch because it's a little silly but not as silly as something like Dumb and Dumber.
I suppose anything indulgent is better with a partner. Just like ice cream or cheese and slices of salami with red wine, we are feeding ourselves on a somewhat silly and very unrealistic Korean drama. I don't know how long this addictive activity will last but I should just shut my mouth (or my head) and just enjoy the ride.
Wednesday, May 13, 2009
I haven't done tons of research but I think it's a no-brainer. Children with disabilities are at risk for bullying. I have been both a bully and a victim of bullying in the past and am really not proud of how I acted or reacted in both of these roles. I'm trying to figure out how I can prevent this for Logan because I see how he plays with other typical children in the playground and the outcomes leave a lot to be desired.
In fact, there are more days than not, Logan is playing totally by himself. He wants to befriend the wolf pack roaming about in the park but he just can not. I feel so bad everytime I watch this and it's hard to help since I have to watch Spencer the toddler but in any case, I feel that some things can not be rushed. Logan's social skills still need a lot more development.
If you click onto that link above, you'll see that it could be interpreted that it's against the law to bully a child with a disability. I'm glad to see that but having been a victim of racially-based bullying when I was little, I can tell you from personal experience, how completely powerless a child can feel. To a kid, the law would be an abstract idea at best, if I had even known about it. My parents also didn't know what to do. They didn't know about the incidents most of the time anyway. I am now trying to remember these experiences because I need to be proactive about teaching Logan about bullying, especially since he will start "big school" soon.
I think I'm going to focus a lot on teaching social skills and building self-esteem. I focus on behavior so much and I don't think I'm doing enough teaching in this area and I really should, right? Couldn't this indirectly impact behavior? I remember that I once watched from a far while he and another boy who was older was playing a game where they were throwing a volleyball at each other's heads (Logan had his bike helmet on so I didn't protest immediately and just stepped back and watched carefully). The older boy never missed but Logan always missed until the moment came when Logan threw the ball straight at the older boy's head. Wham! And that older boy just pushed Logan very hard to the ground even though he had hit Logan's head several times before. That's when I stepped in and called them over to me. Only my son came to me and I praised Logan for not retaliating but now I know I did the wrong thing. I wasn't looking at the whole picture either.
I have to teach Logan to speak up for himself. He still has a ways to go with expressing how he feels through words. I have to push it one step further and make sure he uses his words to protect himself and his feelings. Come to think of it, I do too. I am always the one to think of the greatest comebacks, days after I was insulted. It's really quite pathetic.
I want to teach Logan that he has to say to peers and even to me, "I don't like that," or "That is not right." I think I will also teach him to stand up for others, perhaps that might be the way to go. It's the right thing to do and I believe he is capable of the challenge.
Believe it or not, I have a hard time making friends and I find that it is easier to secure a place in society by volunteering or helping out somehow. If Logan turns out to be this way, I can teach him that he can build self-esteem by helping others while not being a servant. It's a gray area that I need to teach Logan. If he learns to help others, he might build up more courage this way because my little guy can be so afraid at times. On top of that, he's still Asian and racial epithets are still alive and strong today even in a place like New York City.
I forget how fragile he can be since he can be so angry and bossy sometimes. Perhaps, when he talks back and becomes oppositional; those situations might be the best times to teach him how to respond appropriately to adverse situations where he feels frustration and anger. I wonder if I know how to do this. So far, I think I'll be taking tips from Stop Bullying Now.
(pictured: Logan could be in a service position one day. He looks good in red too. Below: if you follow this blog, you'll know that he always tries to help his brother even though he taunts him sometimes.)
Tuesday, May 12, 2009
I suspect that with the Spring allergens, he has less frustration tolerance. I know that he definitely has a lot of environmental allergies but I remember seeing more oppositional behavior last Spring too. There was a huge change but it wasn't an everyday thing but overall the Spring was and can be horrible for us. So this week, I came up with at least one way to calmly divert him away from his frustration and impulsive tendencies and created the "Parking Lot."
Whenever, he wants to do something and it is something that is feasible but just not at that moment, then I tell him that we should put it in a "Parking Lot." This somehow validates his want and quickly calms him down. Also, as I put it in writing, I think I am making a promise that it will get done eventually. Believe it or not, this was an impromptu idea that I had because I saw that he was about to become very disagreeable during a transition and so I just pulled this "parking lot" out of my hat and instantly avoided a tantrum. I love how he responded to it. It took some time for him to understand but I think he got it.
I remember I first learned about the "Parking Lot," when I used to run job-training workshops for teenagers (before I was a publicist, I used to work with teens). The young people would have questions that were not wholly relevant to the direction of my lesson and so all I could do was put it in a "parking lot," and promise to try to get to it at the end of the workshop. This helped everyone focus at the lesson but still encouraged them to think freely and voice out their thoughts and questions.
I can't believe I'm trying it on a 5-year-old but I have a pretty sharp 5-year-old with sometimes very low frustration tolerance so maybe the "parking lot" will be a settling force as the Spring brings us new ideas and new challenges. If you decide to try it, please let me know how it goes.
Pictured: a makeshift "Parking Lot" If the idea takes well, we'll use a dry erase board or a nicer picture and paper. I let Logan put a check on the activity that was completed once we fulfilled out promise to play checkers with him. I used a check instead of crossing it out because I thought it implied that the activity was something we looked forward to doing rather than something we had to finish off. (By the way, Logan doesn't know how to play checkers. But for some reason, he likes playing with the pieces and board with my husband.)
Saturday, May 9, 2009
For example, I cried on three strangers this week alone- some were total strangers like the customer service person I called at the US Postal Service, saying "Ma'am you don't have to cry, all you have to do is......" They happened to be there just as I had made some sort of mistake or was dealing with a mistake someone else had made. The crying spells were really just a reaction to solvable issues but I have had so much anxiety these days that I would probably start crying just because of something as small as a stomachache.
I know I have a lot of stressors in my life but I can't believe how much I let it get to me. I want this to stop. I want to respond valiantly to my challenges. That is how you can measure the greatness of a person, isn't it? By how she deals with fear or any other problems? I have to stop being so afraid; it is the root cause of my anxiety.
The way I try to go back to this way of thinking is to start being grateful again. I believe that listing them will bring me great things. The last time I posted this was on Valentine's Day and here I am doing it again on Mother's Day eve. Anyway, here is my list, I'd love to hear what is on yours:
- I am grateful that my husband has really made some serious changes in how he deals with me and the kids. He has so much more patience and consideration now. He is a full (and helpful) participant in our morning routine and is totally responsible for getting both kids to bed and that is just part of the improvement.
- I am grateful for my soon-to-be-sister-in-law. I am so grateful that she is marrying my brother and going to be part of my family. The kids love her and she loves them. I am grateful to my brother for managing to snag such an amazing person.
- I am grateful for everyone involved in helping Logan have a great first experience in "big school." He is really looking forward to it. It's so cute. He has no idea how hard everyone is working to get the right place for him but he is surrounded by angels. They both are. Thank God for people who help children with special needs. I never had a choice in this matter but they did. Some of them are truly amazing.
- This is going to sound weird but I am grateful to be living in this country. I know that there are countries with much better educational and health systems but there are other places where it is much worse. My parents made the right decision moving to New York from Korea. I forget to thank them for that. They went through hell for us those first years.
- I am grateful for the progress my children have made. Almost a year ago, Spencer ate nothing but pediasure and baby cheese doodles and barely babbled. He was losing weight and scaring the hell out of me. Now, he eats food and can even feed himself (if he likes it) and today he said "cha mul" (chocolate milk! It's not really chocolate, it's carob but whatever). He can pretty much count from 1 to 10 in English, Cantonese, and Korean too! Wow! We still have things to work on but it's so much better than eating baby cheese doodles for breakfast, lunch, and dinner.
- Logan has made progress too. I forget to be but I am so grateful for that. I remember the days he went to nursery school and I was home with newborn Spencer. I would get calls almost everyday telling me to come get him because he was out-of-control. It took a long time but now he is in a great school that knows how to identify and meet his needs. They have helped him and my entire family so much. BTW, see that picture above? Four years ago, he was crying everytime we put him on the grass. We had no idea why but now we do. In the picture above, he is collecting dandelions for me while walking barefoot in the grass. Now it's time for Spencer to get used to the grass, check out his curled toe here. He was so mad at me for taking his shoes off.
- I am grateful to my parents for finally understanding my children's special needs. I am grateful for them both being alive and in my children's lives.
- I am grateful to Logan for teaching me to be a better mother. Spencer benefits tremendously from all the trial-and-errors that we go through. I am grateful to Spencer too. Discovering his multiple allergies really made me question the connection between allergies and behavior and developmental delays. I am still figuring it out but I have come to certain conclusions. The Spring allergens make Logan nuts. There is no question in my mind now.
- I am grateful for my problems breathing. I know that sounds really crazy but they are the loud and clear messages that I need to make me change the way I am living my life.
- I am grateful to all the readers of this blog. You inspire me to keep on trying and your continued reading, commenting, and emails give life to this one thing that is mine.
Wednesday, May 6, 2009
Recently, Dr. Lucy Miller, Ph.D. OTR, who is known in international circles as the top researcher in Sensory Processing Disorder (SPD) agreed to speak to Can Mom Be Calm about how parents can find good Occupational Therapists (OTs) for their children. Dr. Miller is also the author of Sensational Kids: Hope and Help for Children with Sensory Processing Disorder and trained under A. Jean Ayres whose pioneering work brought SPD into the spotlight.
Choosing The Right Therapist
When I asked Dr. Miller to help us figure out how to choose a therapist, she first pointed to a page in the SPD Foundation website that discusses this issue but I was able to get a more specific response. “Before you even start an evaluation, ask them for their resume.” Ohmigosh, I had never done THAT before. However, it’s a great idea, why not? While I don’t have my pediatrician’s resume, I know where she went to medical school, where she did her residency, and at which hospital she can admit patients.
“You have to know where they went to school, how long have they been mentored and where they completed their mentorship. Experience is important, too. You should ask how many years they have been treating children with SPD and how many of these children do they see a year.” Dr. Miller says that this will help you figure out how much experience they have in treating SPD. She also feels it is helpful to ask how many continuing education courses they have taken. If a majority of the courses deal with sensory processing disorder, then that is good news. Hint: On the SPD foundation website, there is a treatment directory that shows examples of resumes reflecting good experience in SPD therapy.
Asking the therapist about their philosophy of treatment is critical. Dr. Miller says, “You want to hear about family-centered care, parents' priorities, and they should have an eclectic approach.” This means they could implement DIR®/Floortime™ (Dr. Greenspan’s approach) or they might implement an NDT (neurodevelopmental therapy) approach. I honestly don’t even know if any of my kids’ therapists do this or not and now feel very much in-the-dark. Seriously, I felt well-read on SPD. Wrong!
There actually is a certificate for SPD. However, the certificate just means is that the therapist is certified to provide the sensory integration and practice test. Unfortunately, it does not automatically mean they are completely capable of treating a child with SPD but it also doesn’t mean they can not. Nothing is easy for us, is it?
How Can You Tell If the Therapy is Working?
Four Steps to Remember
This question is huge to me because I see things in black and white. But OT doesn’t work overnight so how does a parent know that the therapy is helping their child?
- Dr. Miller believes that there should be clear goals from the beginning and that short term goals are best. The OT should be able to provide that to you so you know if it’s working or not working. You have to see changes in function, if not, find another therapist. They should also start their first session speaking with you to clearly understand what you need to see from your child. I can remember very few OTs doing that with me. However, in my experience, the ones that do that initial talk with me, really makes me feel like we are working toward specific functional goals.
- Dr. Miller then said something which really surprised me. Take a vacation from therapy. What? Hello? I worked SOOOOO hard to get my children the amount of therapy sessions they receive from the government but that is what she said. She believes that children should have intensive therapy but then take a vacation from it. “This is how you know what is working and what is progress as a result of just growing up.” You have to admire doctors who tell the truth like that.
- Don’t let the therapist take your child and go into a room while you wait for them in the waiting room. Go in, see what they’re doing and talk to your therapist, she told me. They should be good with communicating with you and you should be comfortable with them. This made so much sense to me because Spencer’s therapist does this almost every time I see him. I get a least one comment from him about his progress and he informs me on the tactics he uses to get Spencer to overcome his tactile defensiveness. We have a great advantage because Spencer gets therapy at home and
is not home to interrupt it. Logan
- I was about to wrap up the topic but Dr. Miller threw this in because she felt it was very important. That is, parents must get their therapist to do standardized testing and not just give clinical observations. Of course, testing is done in the beginning and at the end of therapy but simpler forms of testing performed during the period of therapy can help parents measure progress.
My conversation with Dr. Miller really sent me spinning. I called both of Logan's occupational therapists (school and clinic) to talk with them right away about
There is more to come from Dr. Miller. We talked so long that she was able to tell me some very important things that parents can do to help their child succeed. This conversation really floored me. She actually said that when it comes to sensory issues, parents should use the F-word. It’s too much to explain here but don't be alarmed, it's a lot more tame than you think. I’ll be posting that story hopefully by next week.
In the meantime, please visit www.spdfoundation.net. I'm so grateful to Dr. Miller and the foundation for giving us this advice and I know Logan and Spencer will definitely benefit from it. I am also going to see how I can support them. I used to support children's organizations but I haven't done a lick of volunteer work in years! I heard there is a bumper sticker coming out and I think I'd like to start with that since I love to spread the news and it also might help cover some scratches from my miserable parallel parking attempts.
Monday, May 4, 2009
My drama queen persona was around even back in the old days when I used to work as a publicist for a large non-profit. However, the big difference was we had IT personnel who descended from the heavens and saved the day while we were having nervous breakdowns because we couldn't send and receive emails. Well obviously now as a stay-at-home mom, I don't have this luxury anymore.
More importantly, I am still so surprised that having a well-equipped home office can become indispensable when it comes to strengthening your ability to advocate for your child. Here is a list of my tools:
- Web Faxing: I used to go to the stationery store three blocks away just to fax a few pages. It cost three dollars for 6 pages. Well, I stopped that nonsense with the help of my brother who helped me get www.maxemail.com where I send faxes via the internet. They also give you fax confirmation sheets and that could be important when you need to show proof you sent your document. I think the image is clearer too when you send via internet fax. No more lines down the middle of your fax. I also don't have to deal with it interfering with my home phone or answering machine. I've heard that it isn't an issue but the thought alone overwhelms me.
- Copy Machine: This was horrible when I didn't have one. I hated having to go to the stationery store or library and copy multiple pages one-by-one. And God forbid if I left something important in the machine and walked out (such a me-thing to do). I would have evaluations, progress reports, and medical documents to send to agencies that were reviewing my children for various reasons. I hated having to copy those pages each time they were requested. But life is better now because my new copy and scanning machine lifted so many burdens. I remember that I once went to a meeting for Spencer's Early Intervention review and had given everyone a written copy of my concerns. They all appreciated it. And I loved saying "yes" when they asked me, "Can I keep this copy?" It was very professional even though it was about my personal family life; a fine line that we cross everyday as moms of special needs children.
- PDF Writer: Ohmigosh. I love my PDF writer. I could scan documents that have my signature and then send them to anyone anywhere via email or fax and it would cost me nothing. I think the people who work with me, such as coordinators and school officials or anyone else that I have to exchange paperwork with, love that I have this. It makes things go so much faster in the sometimes slow-paced and heavily detailed world of social work and special needs education. I remember once, Spencer's service coordinator said, "Hey, you didn't tell you you had fax and a scanner." I had just gotten one and she was happy because that meant she could help Spencer faster.
- The Basic Stuff: You'd be surprised but I didn't buy paper clips until a month ago and I barely knew where my stapler was. But I realized that I needed to have file folders, staplers, and paper clips. It took a while but it did eventually hit me that my children will have special needs for a long time and that means the paperwork will just pile up unless I organize them. I did splurge on some cute colored paper clips to have some fun. This of course backfired on me because Logan felt the need to make a necklace out of them and hid the rest of the unused ones. However, our little Spencer happened to find one and thought it would be cool to put it in his mouth.
- My Outlook and Blackberry: These two tools make up the Grand Central Station of my special needs mom office. I send myself reminders about everything: from library book due dates to even jotting down a note that I talked to a particular person on a certain day and to send a reminder to myself when to follow up. I even remind myself to remind my husband that he has to come home early on a certain night. I can't rely on him to remember on his own. And believe it or not, I even have a recurring message sent to me at 8 am every morning to tell me to breathe and believe in myself. I take that little message very seriously and I actually take a deep breath when I read it. It is usually the first conscientious moment of my day. I really love these two tools. Now, I'm looking into seeing if I could use it to make a food diary so that I could more organized in noting possible reactions to certain foods. With the blackberry, it would be easier to note reactions if I'm not at home or if I had to feed them something outside of our home that might have questionable ingredients.
I was about to call the Geek Squad and spend even more money that we don't have but finally my husband spoke up.
He told me that I am responsible for the problems with my computer and until I figure out how it all works, I will always run into problems, even after the Geek Squad comes to fix it. I knew he was right. So I stayed up for hours talking to the Hewlett Packard online help people. It was frustrating. I had to repeat myself often and in the end they (I had to talk to two people because I got disconnected! Argh!) gave me a half-correct answer. It's okay, I figured out what I am supposed to do and my computer is going to be better than ever soon. I have to stop being so afraid to solve these issues on my own. I tend to define myself by my fears but, I think I've evolved a bit. Before I used to be so afraid to bake but now, I feel more comfortable and can bake GFCF cupcakes, cookies, and breads. Now, I'm onto tackling my fear of computer programs and soon, I may even be able to do my own taxes! Ha! Never!