Suddenly Growing Up!

Donna Marie has always seemed so far behind her typical peers that she almost always seemed like such a “baby” in comparison to them.  She will be 5 soon and will graduate preschool in a few days.  It seems like she has been content to just play with infant cause and effect toys or to simply rock back and forth.  Suddenly a big change!  She has discovered purses/pocketbooks.  She slings them over her shoulder and walks around like a real little lady.  She has her favorite TV shows.  In the past she had little interest.  Now she delights in Yo Gabba Gabba.  It seemed like she would stay in that baby phase FOREVER and now seemingly overnight she is running around with her purse and is glued to her favorite program.  Be patient parents.  They all grow up, just at their own pace.  I’d write more, but I think she is swinging her leg over her crib.  (Yes, yes I know she should be in a toddler bed.  Up until this evening she never attempted an escape.  It looks like she’s even ready for the toddler bed.)  Growing up fast!

Vote, Vote and Vote again for Taylor!

Okay lets all get together on this. You can vote more than once. It’s a contest to get Taylor to win Baby of the week in the Babytalk/GMA digital cover contest. The winner will be featured on the cover of Parenting.com. Something like that. I’m not to clear on the details, but I voted a million times. Let’s face it. He’s cute AND has DS. How much better can this contest be? All I know is I love seeing kids with Down Syndrome OUT there. I know I seek out every movie/televsion program/book that features anything about DS. I know when my daughter was born 5 years ago, I rented every movie at Blockbuster that featured anything with a mentally challenged person in it. I even found a DVD set of the television series “Life Goes On” How great was that character Corky in getting everybody so aware of DS, right? I remember when I initally told people my daughter had DS when she was first diagnosed so MANY people in an attempt to comfort me would say, “Hey remember that guy in that TV show? They guy with Downs? He seemed pretty capable.” In a weird way, thinking about this particular show and that actor (Chris Burke) DID make me feel hopeful. Shows like that, as well as movies, books and contests like the one I mention help bring DS out into the mainstream. It was not that long ago that people sent their children with DS into institutions. It was not that long ago that long ago that people treated having a child with DS like a shameful ugly family secret. How great that things have changed! Let’s be proud of our kids and other kids with special needs. Please vote for Taylor at http://www.parenting.com/Babytalk/covercontest/contestant.jsp?ID=42387458 As I said, you can vote several times! His mom is one of my friends from FB and I just had to spread the word. Hey what are you doing still reading this? Go vote for him

It’s a Wonderful Life….And It’s a Life Worth Living

Dena McCune, a facebook friend posted this quote today, “EVERYONE should know that having a child with Down Syndrome is not the end of the world, but the beginning of a wonderful journey…..” Very true words. This is hard to explain to most people without a special needs child. Before my child was born with DS and I would hear other parents of special needs children say stuff like this I used to feel that they were in some sort of delusional denial. I remember when I was waiting for the results of my daughter’s chromosomal studies I was so full of dread. My poor mother-in-law kept insisting that there must be some mistake and there is no way Donna Marie could possibly have this syndrome. My husband was in a deep deep funk. I was exasperated by the two of them. My attitude was let’s just see what actually is up. Then let’s deal with whatever it is. Still, I was very afraid and upset. I would never have imagined my life to be as it is now. My daughter brings out the best in others. She has brought so many wonderful people into my life. She makes me laugh. She inspires me. When I see her struggle and struggle to accomplish something most people take for granted, I am amazed at her motivation. It inspires me not give up with MY personal struggles. You know, in retrospect, I really knew nothing much about DS. I had no idea that there were waiting lists of people waiting to adopt children with DS. I had no idea how loved these children are. There is a wonderful website by Dayna Chandler called “A Life Worth Living.” I encourage everyone to check it out. It is so hard to express how and why our kids are so wonderful, but she comes pretty close. She says, “For any extra challenges you may face, there will be uneqaulled joy. Please remember that God doesn’t make mistakes.” Another favorite line from her site is, “Having a child with DS is like taking the scenic route. You still get where you are going. It may take a little longer, but it will be well worth the trip.” At the site there is a list of recommended reading as well as other recommended websites. Please check the website. You will not be disappointed. The site is: http://www.alifeworthliving.us

Healthy Activism or is the family CONSUMED by special needs issues?

I was chatting with a dear friend of mine whose son has Aspersger’s. She was so excited because she FINALLY found a support group that fit her style. We started to compare notes and discovered one thing that turns us off from some parents. I hope readers will not be offended, but we are just curious if others have experienced this or are we just a pair of insensitive nuts? We basically love most of what support groups have to offer. We are inspired by parents that have a healthy balance of activism for special needs as well as living a normal family life. What drives us batty are the folks who are CONSUMED by the fact that their child has special needs. Intellectually we understand that everybody has different styles of coping. However I am sure many of you have come across the parent who insists their child can do EVERYTHING. The parent who has been to EVERY conference, read EVERY book, is aware of EVERY available therapy, EVERY vitamin, EVERY pill, has been to EVERY rally and walk. You talk to this parent and you don’t feel as though you have made a great contact with a person with a wealth of valuable information. You feel exhausted just listening to them. You wonder if they ever do anything that isn’t special needs related in some way or form. You talk to this person and you don’t feel better, you feel like a slacker. To top it off this parent seems kinda angry. I’m not saying there is anything wrong with being an activist for special needs. I have 2 blogs. I greatly admire people who have dedicated themselves to the cause. I love people like CJ who started the Traveling Afghan Project. I love Karen Bowersox who has started Dows Designs. I love Penny Green who is stopping hateful groups on the internet. Well I guess my friend and I are being a bit judgemental in which type of activism we admire and which we don’t. It’s just on more that one occasion we have been almost frightened by how consumed some people can get by the whole scene. Those people I mentioned like CJ, Karen, and Penny seem to have such a healthy balance. I hope I haven’t offended anyone by this post, but it was sparked by this little observation between myself and this friend and actually a few others. Any thoughts on this topic are welcome.

Vist my new blog as well as this oldie but goodie!

Well, as though I don’t have enough to do, I’ve started an entirely new blog. This new blog is copyrighted and all my own and I’ve made a personal commitment to write at least 3 times a week on it. Please visit my new one at: www. downsyndrome.typepad.com/my-blog That being said, I hope you will continue following this one as well. (At times they may be a bit repatitive) I am hoping to be disciplined enough to write this one once a week. I have a real love for Down syndrome. com because it introduced me to the whole world of blogging and I never would have met all the wonderful people I have met along the way without this place. I hope I am not asking too much to have people check out both! (By the way, my new one is really barely off the ground as I am just learning how to work with type pad. Bear with me….It will be a crappy first few weeks……ha ha ha until I get my bearings.) Hope to see you around the blog universe

The T21 Traveling Afghan

I can’t say enough about this amazing project. Like it says on the website, “One blanket. Fifty US states. Many countries. Hundreds of families. One common thread.” Basically anybody that has been touched by somebody in their lives with DS can sign up to receive this special blanket. They keep it for a few days. They take photos of their special person with the blanket and share experiences in a journal that comes with the blanket and then pass it on to the next person. Even if you don’t want to get involved with receiving the blanket (Are you nuts?), check out the site anyway. You can see great photos and stories as well as follow where the blanket has been and where it is going next. Click on the T21 Traveling afghan button or click on the link below:

http://www.thet21travelingafghanproject.com/

Donna won’t use her picture cards at home.

Donna is 4 years old and doesn’t talk yet. She uses picture cards in school but REFUSES to use them at home. If she could talk, this is the conversation I imagine she would have with her teacher. Enjoy my little movie below. (Click on the words below.)
No work from me during after school hours

Fasionably Hip

Let’s face it. Our kids have special needs and challenges. We don’t want them to be challenged fashionably as well. Nobody wants their kids to be dressed like a doofus. Still, it can be hard when your child has Downs because they are a little thicker in the middle and tend to have shorter extremities. (I realize this is not always the case and there are many variations. My daughter is quite tall, but I still have trouble finding pants that aren’t too long.)

Well, our fashion prayers have been answered! There is one cool grandma who hated the trouble her daughter was having finding clothing that fit her child’s size. This awesome granny has started a clothing line just for our kids. She is starting with jeans. (Let’s face it. It’s IMPOSSIBLE to find jeans that fit our kids.) I stumbled upon this woman’s clothing website while reading a stream of conversation on Facebook. (I am hopelessly hooked on FB….but look at all the cool stuff I discover!) Here is a little bit from her website plus her web address:

http://www.downsdesigns.com/
Designed for You
At Downs Designs, we understand finding clothes for people with Down syndrome and having them fit is a daunting task due to the differences in proportions. That is why we have set out to create a full clothing line that is specifically tailored to fit the body shape of someone with Down syndrome, starting with our jean line.

Down Sizing
All of our clothes will be cut to fit the distinct and specific measurements of our customers with Down syndrome. To make sure we provide you with the best-fitting clothes possible, we are analyzing waist size and inseam, along with weight, age, and other various markers to come up with a product to fit the precise needs of men, women, and children with Down syndrome.

Special Offer
Right now, Downs Designs is offering a 10% discount on your first purchase of a pair of our jeans as soon as they become available if you simply fill out our “Down Sizing” Research Form. The data collected through this form will allow us to further tailor our clothes to better fit the needs of our customers with Down syndrome.

Downs Designs, Inc.
8796 Tyler Boulevard
Mentor, Ohio 44060
tel 440.954.1675

karen@downsdesigns.com

©2010
My name is Karen Bowersox and I have a 5-year-old granddaughter with Down syndrome. Her name is Maggie. After watching my daughter struggle to find clothes that fit her I wondered what I could do to help.

Research showed that availability was limited, so I created a company called Downs Designs. I am in the process of designing a full-line of clothing for all ages, starting with jeans.

Your input and suggestions are so important as we develop this new concept in clothing. Please fill out our research form as we move forward.

To Tell or Not to Tell

I stole this title from another blogger.  She was looking for input about how people handle telling others about their child having DS.  I remember I wrote a whole long thing to her about how I am so open about Donna Marie’s DS and that it is really no big deal if I don’t make a big deal out of it myself, etc.  This was months ago.  NOW I remember that I was totally dreading telling my mother about my daughter’s DS when she was first born!

First some background information for all of you.  I had no idea my daughter would have DS.  I did not have the amniocentesis prenatally.  Despite my age at the time (I was 2 months shy of 36 when she was born), I was totally unworried even though I knew the risk of DS increases with age.

My mother, on the other hand is a worrier.  It there is nothing to worry about, she will find something.  It is almost like a hobby for her. No, worrying is her vocation in life.  If we tell her not to worry her response is, “If I don’t worry about these things, who will?”

During my entire pregnancy she would tell me she was having a terrible premonition that there would be something wrong with the baby. (Oddly enough she never had these premonitions when I was pregnant with my second child who is as we say “typical.” I don’t know if she had real psychic premonitions with my pregnancies or if she just had a lucky guess with Donna and then moved onto some new worry with my second pregnancy. Who knows? Back to my story.)

So Donna Marie was born and we had to wait for almost a week to find out from the chromosomal studies to find out if she had DS. (The test was ordered due to her low muscle tone, almond shape eyes, etc.)

My mom and I are very close and normally I tell her everything right away. Still I was waiting for the confirmation of the chromosomal tests to tell her. This is so uncharacteristic of me! Normally I discuss everything with her.

The reason I was waiting was I was convinced that the news would literally kill her. I am not exaggerating.  She was under a great deal of stress at the time.  My father was entering the late stages of Alzheimer’s and was still living at home under her care. (He lived at home up until his death in 2008)  My mother was being treated with powerful steroid for temporal arteritis and was not in good health. She had been through rough moments in her past. She had breast cancer years ago,  her oldest son had several brain surgeries as a child for a recurrent brain tumors, she along with part of her family had to run from her native Lithuania as a young girl during WW II, etc. etc.  Still somehow the stress of my father’s illness seemed to be taking an enormous toll on her and she was very depressed. The steroids for the temporal arteritis were also contributing to the stress.

So, as I said, I thought the news would kill her.  I even asked the pediatrician if she thought I would be able to pull off lying about it to my mother!  (She told me, no.  She told me Donna’s DS was pretty obvious and would only become more obvious as time went on.  Although I must say, up until this point my mother was only puzzled as to why Donna Marie was so quiet and was sleeping sooo much. )  I remember that the thought of telling my mother was so awful I thought I would crack up.  When it was time to finally tell her I went to her house with Donna Marie.  I didn’t go by myself.  I went with my husband, my mother in law and my best friend.  They all already knew.  Everybody knew except my side of the family.

After a good cry,  my mother amazingly pulled herself together.  As I  said, she had been in quite a depression due to recent events before this news about Donna Marie’s DS.  She seemed to just be barely drifting along.  Surprisingly the news of Donna Marie seemed to push her out of it!  She told me so herself.  She said,  ”I want keep myself well.  I have to see how Donna turns out….. I am so worried.”  It seems like her worry over how Donna Marie “turns out” has pushed her to keep going.  It is now 4.5 years later and what I thought would ultimately kill her has possibly saved her.  I would never have predicted that Donna Marie would have this effect on her.  They share a special bond.

So, while I may have gone on and on in the past that sharing news of DS is a breeze and a wonderful opportunity to educate others, blah blah, I now remember and admit that it isn’t always so easy.

Brooklyn Baby Disco helps NDSS….Join us!

Saturday afternoon is the new Saturday night for kids 6 months old to 7 years old. Baby Loves Disco transforms the hottest clubs into disco clubs for little ones during daytime hours. To honor the son (3 month old Henry) of one of their employees (Kara), Baby Loves Disco is dedicating their Dance for a Cause Event to the National Down Syndrome Sociey (NDSS). They will donate 5% of their ticket sales as well as 100% of the proceeds from their raffles, etc.  The Brooklyn event is at Southpaw on 125 Fifth Ave in Brooklyn on Saturday Dec 5th from 2PM – 5PM. The cost of tickets is $12 per “walking human” in advance/online.  (Enter promo code NDSS online to get an additional $2 dollars off ticket price.)  “Non-walking” humans are FREE. Go to www.babylovesdisco.com for details. There will also be a Manhattan event honoring Kara’s little Henry and supporting NDSS on Dec 13th at Le Poisson Rouge, at 158 Bleeker Street. See the above website for details. Also check out Kara’s blog to read about Henry and the rest of the family at:  www.threelittlekings.blogspot.com