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

Dan Savage…….a real savage.

Some of you may be unfamiliar with Dan Savage’s writing.  He is pretty famous for his ”Savage Love ” advice column among other things  He is an author, journalist and author of many works.  Known for his liberal political point of view and gay rights activism, his writings have been thought provoking, humorous at times and certainly controversial.  In the past I have been intrigued by his work.  However his recent article title, ” ‘Tard Supper” has really disappointed me.

Basically he has published an article about a piece of art work depicting the Last Supper in which everyone at The Last Supper has Down Syndrome.  Personally I LOVE this portrayal because our loved ones with DS embody so many Christ like qualities.  I don’t know if this is what the artist intended to portray.  I don’t care.  This is what I get out of the work when I look at it.  I like it.  What I don’t like is the title of Savage’s article,  ” ‘ Tard Supper.”  You can view the article and all the comments at this link:  http://slog.thestranger.com/slog/archives/2009/11/09/the-tard-supper

To come up with such a title out of ignorance and carelessness would be a minor offense.  However, Savage has received so many negative comments and requests for a retraction of this title.  There is no way that he can no longer be ignorant of the fact that he has dealt a cruel blow not only to those who are mentally challenged and can not always defend themselves, but to their friends and families as well.  I can not fathom how a man who speaks out against slurs against the homosexual community can turn around and then use such a slur against those with DS.  How can a man that demands respect for some be so disrespectful to others?  True hypocrisy.  What about the homosexuals within the DS community he has offended?  (I guess he does not consider all of the homosexual parents of children with DS he has offended.  I guess he does not care or even want to think of the homosexuals that have DS.)  

I have left a comment about his hurtful title.  Some will argue that Dan Savage is only being an advocate of free speech and is delighting in all this hullabaloo it has generated.  Sure, free speech is important, but what about basic kindness, compassion and respect?  Shouldn’t free speech be used responsibly?  Some will argue that Dan is probably not even reading these comments and onto something else already.  I don’t care.  Some would say it’s best to just ignore him.  Still, I say we have to stand up for our loved ones.  I urge you to visit the link:  http://slog.thestranger.com/slog/archives/2009/11/09/the-tard-supper and share your thoughts as well.

Pressure on the siblings

My daughter has DS. Her younger brother has a speech and fine motor delay. They say he will catch up by kindergarten. They say he has no other problem. (Believe me, we have had every test done.) Still, I find myself worrying more over him than my daughter with DS. My daughter has such an obvious disablitly. EVERYONE is so kind and patient with her. I have been analyzing myself and find that I am so anxious about having Christopher catch up to his peers. Why is that? I am so laid back about Donna. It’s not that I find that her situation is hopeless or anything but I am more accepting of her limitations. It is what it is. With my son, I can’t fathom why he is having trouble with speech, etc. I am only learning now how to cut him some slack. At first I was so gung ho and pushing Montessori ed. etc. That didn’t work out. Then we got him into special needs preschool prorgram where he gets his speech and OT. I was so overly ambitious I ALSO enrolled him into a typical preschool. The poor kid was absolutely exhausted going to 2 schools. Then they told me he wasn’t able to keep up in the typical school and I was crushed. It wasn’t until I took him out of the typical and stopped by the special school and saw how totally happy he was there that I came to my senses. I haven’t been writing on the blog for a while because I have been busy analyzing this whole thing. I am coming to the realization that I have been expecting my son to be this wild success in response to my daughter’s limitations instead of just going with the flow and enjoying and accepting who he is.  I know my situation can’t possibly that unique and I was wondering if anybody else has had any similar experience?

Alexander’s Angels 3rd Long Island Buddy Walk

The 3rd Long Island Buddy Walk will be held on Sunday October 18th at Nassau Community College.  For more info check out the following website:

 www.alexandersangels.org

Our team (Team Donna Marie) will be there along with many others.  Hope to see you there!