Friday, September 28, 2007
Has your child had a G Tube? Can you share your experiences and suggestions with us? How long did (or has) your child have (had) the tube? Did you buy modified shirts, or modify your child's clothes yourself? If you could create the ideal G tube-compatible top, what would that design be?
Please use the "comment" function or email me at email@example.com. Thanks!
Thursday, September 27, 2007
Wednesdays are going to be our busiest evening, Ted, Robbie, and Katie have Greek school, and Helen has religion class. For those of you who are not Greek or have not seen My Big Fat Greek Wedding, Greek school teaches the kids about the culture, how to dance, and to speak, read, and write in Greek. Peter and his sisters went when they were younger along with all of their friends who were Greek. I feel it is especially important for them to go now, Peter isn't here to expose them to all things Greek. My kids are half Greek, Peter was born there and immigrated when he was four years old. They need to understand where their roots are and hopefully one day visit the village where their dad was born. They will be able to speak the language and therefore not feel like "outsiders". They seemed to enjoy their first night, Katie even spoke! Next week is Helen's first day back at religion class, she absolutely loves it. I am hoping this year they will work with her more on appropriate behavior in church. Last year the teacher took them into the church and talked about different things within the church and touched a little on how to act. I did see a slight improvement with her for a couple of weeks, but then classes were over and she went back to being loud. It will come together in time, until then we will keep sitting in the family room (cry room)!!
We have had a visit from the tooth fairy, twice! Helen lost her tooth while at school and she didn't swallow it, yeah!, this is the first tooth that I have of hers to save. Robbie lost his tooth a couple of days after Helen. We will be having another visit soon, Helen's other front tooth is loose and is about to fall out. Robbie was so excited to have lost a tooth, it has been awhile since he lost his first one. He put it in a ziploc bag and stuck it under his pillow hoping to cash it in for a dollar. I was so tired that it slipped my mind that Robbie was hoping to strike it rich in the morning. He was getting ready for school when he remembered his tooth under his pillow. He ran yelling into his bedroom, "I have to see if I got a dollar!" All was quiet after that until I saw Robbie come walking slowly into the living room with his lip down to the floor. It was at that point I remembered and thought, "Oh CRAP!!!!!" Robbie said to me very sadly, "The tooth fairy took my tooth but didn't leave me a dollar." Poor Robbie thought he had been jilted by the tooth fairy. I told him I would go and see if I could find it, I thought this was my opportunity to make good for the tooth fairy. He followed me. I grabbed Noah as my cover and told Robbie as soon as I was done changing Noah I would look, and for him to finish getting ready for school. It worked! I grabbed a dollar from my dresser and threw it under his bed aiming for the head of the bed. I then frantically searched for that tooth and was successful at that mission also, I stuck it in my pocket. Thank goodness Robbie is a wild sleeper, I have teased him on many occasions that he is just like his dad in that way, he always smiles. I then called him to come back, I had found his money! He was a happy camper when he saw the dollar on the floor, he crawled under and grabbed it, coming out with a huge smile on his face, minus one tooth! He said to me, "Look at my covers, I'm sure wild when I sleep, just like Daddy!"
Helen had open house at her school the other night. She lead the way from one class to the next, to the gym, and what I thought our next stop to be, the library, but was not. Helen and the other kids got way ahead of me, I knew where the library was so I figured I would meet them there. The library is just down the main hall from the office, where they had a couple of tables set up for PTA and ordering yearbooks. When I turned the corner and saw all the congestion surrounding the tables I wondered if my kids all made it through. As I got closer I saw Robbie motioning to me to "hurry up", I was holding Noah at this time because I didn't want to lose him. I watched Robbie walk past the Library so I thought maybe they were going back to Helen's kindergarten class. When I turned another corner I saw Helen way ahead of me heading out the door towards the playground. I picked up my pace and made it out there, letting them all know I wasn't happy we were outside. Helen got blamed, they told me, "She led us out here, and we couldn't stop her!" Well, I know Helen all too well and know my kids were speaking the truth. Once Helen catches sight of a playground she is off and running. I did a head count and came up with five, uh-oh. I looked around and did another one, I guess I was hoping number six would pop out from somewhere, again, five. Realizing it was Katie who was missing made my heart sink. I told Ted to keep watch on the kids and to stay put, I knew they weren't going to leave the playground. I went back into the school thinking Katie probably went back to Helen's kindergarten class, it is located right inside the door. As I was peeking my head in the door I heard over the loud speaker, "Will the parent of Katie please report to the office to pick her up." I was expecting to see a little girl crying, maybe even screaming, when I walked up. I was pleasantly surprised to find a little girl waiting against the wall, people watching, no tears at all. She smiled when she saw me and we went to collect the rest of the kids. It was then that I realized, they didn't know Katie at this school, how did they know who she was. She told them her name, YOO-HOO!!! What a huge accomplishment for her, I was so proud. I had to pry Helen off the monkey bars, it was time to go home even though I didn't get see all of her teachers. On the way to the car Helen told me, "Mommy, fun!!!" That just topped my evening, Helen has never shared her feelings about anything unless I ask. On her own she told me she had fun!!! I left my house thinking it would be just another school open house. Instead I had two of my daughters making huge strides towards becoming young ladies. What an evening!:o)
Until next time-
Monday, September 24, 2007
So while I can't focus my feverish brain long enough to eek out an entry today, I have been pondering colds all day. I realized during my ruminations that I haven't had a cold for about 4 years. That was a nice respite. When I was in law school, while also working full time in the corporate world, I had at least two nasty colds every year - one after each finals period. The summer I took a class - Evidence - I got a summer cold after that final too. My mind and body always held out long enough, and produced the necessary adrenaline, to get me through finals. And then, when the finals were over and the adrenaline stopped pumping, the inevitable cold overtook me. I'm so glad those days are behind me; I hate colds.
So, sorry there's nothing more engaging today. Talk to you in a few days when I know I'll be more clear-headed and I may have something less inane to write about.
Friday, September 21, 2007
I just changed the contact email address in my blogger file and am starting to transition business communications to that email box. The new address is "firstname.lastname@example.org". If you've got the previous email address, that will still get to me. But, that's my personal email account and the business has reached a point that makes the business email address more critical. Separating the business from the personal email ought to prevent my overlooking a message from one of you because it got lost among the messages from family,friends, Amazon, Practical eCommerce, electronic newspapers, my daughter's favorite online shops, and all that spam from those crazy made-up "sender" names that are created to evade the filter.
Question: How will you sell the clothes?
It'll Fit'll clothing will be sold on-line, via an "itllfitll.com" web site. (Hence the subscription to Practical eCommerce.) The traditional distribution model for clothing doesn't make sense for us, for a few reasons.
Large national retailers would be very challenged in stocking the right mix - gender, size, apparel type, quantity, etc. In this relatively small niche market I expect they would choose not to risk it. Afterall, there's been no real need demonstrated to them. They're selling clothes to/for people with Down syndrome now; "why bother?" might be their thinking. Smaller, boutique-like retailers might be more willing to stock It'll Fit'll items, but employing a sales rep to cultivate that business is not the best use of our very limited resources - especially since the ecommerce option exists and that will allow us to offer our product at the most reasonable prices possible.
In order to keep prices reasonable we need to sell directly to consumers; there's no margin to share with retailers. In addition, we will not have the human or financial resources to fill the many and varied esoteric requirements of retailers (Susie will be our entire distribution function.) Nor will we be able to afford the financial penalties - "chargebacks" is what they call 'em - that retailers assess for missing a requirement. Also, the standard payment terms that most big retailers impose are unaffordable: 8% discount, payment in (typically) 30 to 60 days - sometimes longer!
Also, selling directly to you brings us closer to you in many other ways too - in terms of communication, feedback, responding to your needs, new poduct development/time to market, etc. I believe that maintaining a short and direct line of communication between us will be a good thing for all of us.
Since clothing fit is important to you, and the basis for this business, the website will have a section that fully explains the sizing. To assure that you're ordering the right size clothes, you'll need to take a few basic measurements of your child. Being on the same page relative to sizing will eliminate the downside of not being able to try on the clothes prior to purchase. And, there's always the final fallback - being able to return the clothes if necessary.
Hope everyone has a nice weekend. It's going to be sunny and in the mid-70's in northern Illinois this weekend...perfect!
Wednesday, September 19, 2007
I had a difficult day today, emotionally, I have felt on the verge of tears all day. It started as soon as I woke up. I had a dream about my mom, my best friend, and her mom (she was a second mom to me, she passed away 15 yrs. ago). It was one of those crazy dreams that don't make much sense, but the feeling of having them with me and talking to me made me sad. I kept thinking of them and also of Peter all day. When I went to pick Grace up from school, I saw Katie's teacher and we talked a little. I don't want to go into detail, Katie is having a hard time. It was very upsetting to me, but I have taken the steps towards getting the help we need. My heart is breaking for her, when I am ready, I will share.
Tomorrow is Robbie's first den meeting as a Tiger Cub, he is so excited. We are going to do the achievement of going outdoors, we are supposed to have nice weather. We are going to take a walk to the lakefront, along the path is a monument to a few firefighters who lost their lives in a fire. I have never been down this path, our den leader has and said it's a nice trail. He asked if I would want to go over fire safety with the boys. I'm thinking, "Why Me?" I said I would, I figured I would review what they have already learned at school, stop, drop, and roll! Wish me luck.
Yesterday I took my car into the shop because the brakes were acting very weird. Bob, the mechanic, took it for a little drive with us in the car (Grace, Noah, and myself). We were discussing the brake issues and Bob is driving and testing, the kids were very quiet. Bob jumps and turns to look behind him, he didn't realize the kids were with us and Noah had kicked his seat. I laughed so hard, it was so funny!! They kept my car all day and ended up giving me all new brake pads. I just had my brakes fixed a couple of months ago, so this shouldn't have happened. Hopefully the problem is fixed! Bonus-I didn't have to pay for it!!!
I'm going to cut it short tonight, I just want to go and relax for a bit. I apologize, I know this post isn't up to my usual standards. It truly has been a tough day for me and I just don't have it in me tonight. Sorry.
Until next time-
Tuesday, September 18, 2007
Question #1 - Are you going to sew the clothes yourself?
No. No, no, no. Heavens no.
I don't think Susie ever learned to sew (in fact I'm certain of it since I've got to sew patches onto Robbie's Cub Scout uniform, as I did Teddy's last year.) And, while I do have a sewing machine - having fallen in love with sewing when I learned how in junior high school - I'm slow and deliberate and inefficient and probably not very good at it anyway. Although I did sew many clothes for myself in junior high and high school, it was always slow going. In fact, I think there may be a fancy mathematical equation that reverse-correlates a seamstress's talent with the number of seam rippers she owns. Given my seam ripper collection - several sizes, several colors - I'm no exemplar of sewing ability.
The clothing will be produced by sewing contractors/manufacturers who are good at this. So, the jeans and pants and tops and dresses will look like any other store-bought jeans, pants, tops and dresses. One comment I've heard often from parents is that their children want their clothes to look like the other kids' clothes. The It'll Fit'll clothes will.
Question #2 - Will your product line be for kids only or will you have an adult offering too?
We do plan to produce clothes for children, teens, and adults within a year's time. Our first offering will be jeans and twill pants (i.e. chinos) for girls and boys, through tweens. The next phase will be those same styles for teens and young adults. Then we'll introduce the adult pants offering. We will deepen the product lines, by age group, to include tops, shirts, dresses and the like as the market responds. We hope that's quickly and enthusiastically.
Concurrent with development of the pants lines we are developing a body suit line for younger children. I'd refer to those as "Onsies" but that's a trademarked term owned by Gerber. The body suit size range will begin at about 3 years old and continue through about age 7 or 8.
Here's our basic plan, as of right now. We will have our first pants available in December. In the Spring we'll have tops and pants for boys, girls, and tweens. For Summer our girls offering will include a summer dress and capris (that actually finish at capri length!) Spring/Summer will be the launch of our teen and young adult lines. Our adult line will launch in Fall of 2008. We are excited and hope that you guys respond positively enough to allow us to expand more quickly than planned. And, we're happy to hear suggestions and ideas from you about priorities and preferences.
OK, it seems that two questions at a time is the better approach. So, I'll end here. I've got a handful of questions from the Buddy Walk left to answer. In the meantimes, please feel free to pose additional questions to me via the "Comment" function or email me directly. I would love to hear from you and answer any questions you pose.
Monday, September 17, 2007
Susie and I, and our children, spent a lovely day yesterday at the Down Development Council's 9th Annual Buddy Walk. From the adult perspective it was a very good day. The weather was perfect, the attendees, organizers, and the other exhibitors were welcoming and supportive, and the walk itself was a nice stretch of the legs and very well attended.
From the kids' perspective it was a great day. There was a section of the grounds that was an inflatable wonderland - a castle, dragon, maze, slide, ridable horses that kids rode/bounced around an inflated track enclosure. There were hot dogs and chips and pop ice cream and free games - with prizes! - and sun and fresh air and open space and a huge bowl of Tootsie Rolls and lollipops at our table to which the kids helped themselves often. Evan told me many times that he was having a great time. He's already looking forward to next year's event.
I wish we could have gotten all of Susie's kids in the picture above, but that was impossible. Helen would not be budged from the inflatable paradise (in fact she was even there when it was a deflated plastic footprint of its former self) and Teddy, Robbie and Katie were similarly preoccupied.
We had many, many nice conversations with Buddy Walk participants and got some great insights and suggestions. Folks posed several questions to us and I realized that you guys might have the same questions, but not the live conversation in which to ask them. So, I'll answer a number of those questions with blog entries - beginning tomorrow. Talk with you then.
Wednesday, September 12, 2007
Helen is loving school, she really enjoys her teachers, I am lucky. Her school principal has worked it out so the assistant is in her classroom most of the day. Her teacher is in the process of updating her IEP, so we should be meeting very soon to make the changes. Our advocate from The Arc has looked over Helen's IEP and has made her suggestions, I agree with all of them. I am quite confident her teacher will agree with them also. Everything is falling into place. My other kids are adjusting quite nicely to school, Katie has even spoken a few times to her teacher and to friends, HOORAY!!!!
My kids have chocolate bars to sell for their school's fundraiser, there are fifty to a box, we received three boxes. We have a hard time selling one box!!! This past week-end we had a birthday party for Ted, he sold a lot to our family. On Sunday after church we went around our block to try and sell some more. Helen and Noah were in the stroller (remember, they are partners in crime), Katie and Grace rang doorbells, Ted was the salesman, and Robbie collected the money! It was actually quite organized, I had nothing to do with it, they all took a job. Altogether our week-end sales totaled $26.00, WOO-HOO!!!! My brother Rick offered to take a box and sell them at his school (he's a teacher). He called me on Monday after school, he had sold $26.00 worth in ONE DAY! On Tuesday I received another call, he had sold the rest!! He came by last night to drop off the money and pick up the rest of our candy, I'm sure he will have it sold by the week-end!!!
I hope to see some of you at the Buddy Walk on Sunday, Helen will be there along with Ted and Robbie, the rest of my clan will be with Uncle Rick and Aunt Annie. We usually all go, but since this time I will be working and it's going to be such a long day, it's best if the younger ones stay behind. It's going to be FUN, FUN, FUN!!!!
Until next time-
Tuesday, September 11, 2007
Susie and I will have an It'll Fit'll booth there. Helen will be there too and some of Helen's buddies/siblings/loved ones. Please stop by. We'd love to meet you guys. We'll also be taking measurements - or helping you take measurements, if you'd prefer. So come by and get a tape measure and a bouncy ball! Those measurements will augment our existing modest database and will help us better understand growth patterns and dimension ranges and - ultimately - assure that we meet the promise of the clothes we'll produce: "It Will Fit Well."
As of this moment, weather.com predicts a high temperature of 67 degrees in Libertyville on Sunday. That may well change between now and Sunday, but even with a few degrees shift either way it still sounds like a lovely fall day. We hope to see you there.
Monday, September 10, 2007
I was diagnosed with hypothyroidism last week. That diagnosis was a relief beyond words. It finally explained the symptoms that I've been feeling for too long and could no longer explain as grief from my Mom's recent death. And, speaking of Mom, she suggested now and then that I might have a thyroid issue. But then again she often expressed concern about the state of my health. I had a spinal fusion, which included some metal instrumentation, at age 15 and ever since then she perceived me as frail. For decades she would admonish me for lifting something she considered too heavy and I'd always respond that "I'm fine. I have a steel-reinforced back!" I always laughed but she didn't; she was always the worried, doting Mom. But, I digress.
Mom had hypothyroidism. Susie, my sister, has hypothyroidism. As you know, Helen, my niece has hypothyroidism. Hypothyroidism runs in families. In addition, women are 4 to 5 times more likely than men to develop hypothyroidism. Some estimate that women over 35 years old have a 30% chance of developing hypothyroidism. Finally, the incidence of hypothyroidism increases with age. Hmm. I should have pursued this possibility a long time ago. I wish I had. I have to thank Anne Marie, my friend and sister-in-law (my brother Rick's wife,) for persuading me to get to the doctor. She became convinced that I had an underactive thyroid when her doctor talked to her about symptoms at a check-up. Annie doesn't have hypothyroidism. So, while it does run in families, it hasn't jumped over to the in-laws.
My symptoms were typical: Fatigue and weakness - when I wasn't sleeping, I felt like I should be. There were times when I could barely keep my eyes open. Depression - I attributed this to deep grief from Mom's death. Brain fog - perfect description for the addledness that I'd been experiencing. Weight gain, hair loss (a particularly cruel combination...why couldn't it have been weight loss and hair gain?) Other symptoms include cold intolerance, muscle aches and pains, constipation, heavy or irregular periods, increased blood cholestrol levels, decreased libido, eye and face swelling. Some patients exhibit multiple symptoms, in others the symptoms are subtle, some patients display no symptoms at all.
The condition is diagnosed through a blood test. In my experience, the blood draw was fast and painless. The doctor followed up with results in less than a week's time. The treatment is a synthetic thyroid hormone. It is such a commonly prescribed medicine that it's on the formulary of $4 medications at Target and Walmart pharmacies. The dose for this first month is the maximum beginning dose. Next month the dose is higher, then a repeat blood test will determine whether the dose should be increased again. The dose adjustments and blood tests will continue until results are back to the normal range.
I already feel a little bit better, though not nearly back to normal. I know, though, that I will eventually be back to normal. And that's a huge relief and comfort. (Who knows how much It'll Fit'll can fill your needs with some sustained and focused energy!) Anyway, conservative estimates are that 10% of the U.S. population may have a thyroid disorder and as many as half of those people are undiagnosed. I'm glad that I'm not one of them anymore. If you're not feeling well and have some of those symptoms, talk to your doctor. Don't let yourself go undiagnosed either.
Wednesday, September 5, 2007
Thank you for letting me have my say.
Tuesday, September 4, 2007
Here's the overview.
Standard zipper and button clossures on pants present a challenge for many children with Down syndrome. The buttons, in particular, can be difficult. So, the standard approach is out. There are a handful of possible alternatives. What's the best approach?
- Elastic around the entire waist and no opening. This design would incorporate a faux zipper and a faux closure. This seems like the best approach - to a point. The issue is that at some point the child wants to wear clothes like the other kids are wearing. Is that the time to transition to a real fly and closure? Also, some parents have expressed a desire for their child to master the skill of buttoning their pants. If that's your perspective, at what point should the child begin to develop that skill?
- Velcro closure. That may be the easiest closure of all. But, is it strong enough - especially over time when the catching hook section seems to collect every stray piece of thread and lint that it encounters in the laundry pile or washing machine. When it's collected enough, the strength of the connection is much diminished. I always end up picking those little pieces out of the velcro. It's oddly compelling - like peeling a sunburn - but it's a time consuming bother. What do you think?
- Snap closure. Snaps are widely available and many pants manufacturers use snaps in their lines. Snaps don't require as much fine motor skill as buttons. Other than the occassional tricky
or uncooperative snap, they seem like a good option. Are there issues I haven't heard about or considered?
- Button closure. Seems like the most challenging, so least desirable, option. There are ways to make buttoning a little easier - using a bigger button, making the hole a bit bigger than the standard size for whatever button is used, a long shank on the button. Is that extra help enough to make this option desirable? Are you a parent who wants your child to master buttoning and, if so, when do you want that to happen?
- Any other options or suggestions?
Please share your thoughts and ideas. Thanks!
Monday, September 3, 2007
To me one of the marks of Labor Day is the expiration of opportunity to wear white shoes. I am of a generation that was taught that one should not wear white before Memorial Day or after Labor Day. I've tried to convince my daughter to adopt the same rule, but to no avail. She thinks I'm silly and old-fashioned. Funny thing is that I thought the same thing of my Mom and the rule - until that fateful day in the third grade.
My brother Rick and I made our First Communion together, when I was in second grade and he was in third; we're 14 months apart in age. My dress was a beautiful, frothy, white confection of tulle and lace. I had a sweet shoulder length veil with a circlet of pearls which, in retrospect, I imagine were faux. And my footwear - in addition to the delicate white anklets - were white patent leather Mary Jane shoes. Walking in those shoes was like walking on clouds. They were, I thought, the height of glamour and fashion. I know that the First Communion wasn't about the great ensemble, but to a 7 year old girl it was certainly a big upside.
Well, I certainly could never wear the First Communion dress again for any occassion. (Sort of like a harbinger of underused bridesmaid dresses...) But, those perfect shoes! Surely I could wear those again and, in the process, add shine and sparkle to my otherwise ordinary school days. It was autumn by then, months after the Communion, and those glistening white shoes would standout like jewels among the muted earthy fall colors that everyone else was wearing. I was crestfallen when my Mom refused to let me wear the shoes. It was, she pointed out, long past Labor Day and white shoes were not allowed. I used every persuasion technique I could; probably I mostly just whined. Mom would not budge. I was absolutely forbidden from wearing those white patent leather shoes. So, I snuck the shoes to school one day and changed into them as soon as I got there.
Yep, I sure did feel special dancing through the halls in those shoes. In my view, Cinderella in her glass slippers had nothing over me. But then it hit me: a stomache ache. I got sicker and sicker as the morning passed. I think it may very well have been guilt, but I'm not sure. Whatever the cause, my teacher sent me to the school nurse (who was also, by the way, the school secretary.) Mrs. Caswell - who had the sweetest, most kind demeanor but had no time to have a sick child hanging around the office - called my Mom to come pick me up from school. I didn't have the presence of mind to change back into my regular, regulation shoes. Mom came to the school, retrieved me and got me home. Of course she spotted the shoes immediately. So, despite my stomach ache, I got in big, big trouble. I don't remember the details of my punishment but I probably got spanked - a common practice among most parents back then - and restricted too.
This I do remember: The shine was off those shoes; the allure was gone; the fairy tale was over. With the exception of my wedding pumps and a parade of canvas sneakers, I've never owned another pair of white shoes. And, even though I do know that the rule is long outdated, I feel a bit jarred whenever I see someone wearing fine white shoes before Memorial Day or after Labor Day. And after the jarring feeling passes, I smile at the memory of my white-patent-leather-shoe-caper and the many times Mom and I laughed about it years later.