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!

Pleasantly Surprised and Dancing With the Stars

I was walking by a dance studio a while back with my kids. I popped on in and just was honest with the director. I wanted my daughter to attend a dance class and have fun and wear a tu-tu but I wasn’t sure how well she would be able to follow directions. I told her about the Down Syndrome and the low muscle tone. I told her I didn’t want her to be disruptive to the children whose parents were sending them to learn dance and make some serious progress. I told her I was not sure if Donna Marie was a good candidate for her school and did not want to pressure her in any way to accept her if she was not a good candidate.

I was so pleasantly surprised. The woman (Adrianna) said she never turns a child away. She had never worked with a child with DS before, but was eager to learn. She set up a trial class and asked me to email as much info about DS to her as I could before the trial class.

I emailed her links to various DS sites and had my daughter’s PT email her as well. When I showed up for the class, there was another little girl with DS (mosaic form) there for a trial class as well.

The two girls went to the dance room as the other mother and I sat in the foyer. We were permitted to peep through a glass door covered with a lace curtain as much as we wished.

Adrianna had them practicing all sort of moves. Swaying scarves, doing things with hula hoops, stretching “like a cat,” etc.

My Donna Marie often went off to do her own thing, but Adrianna was so patient. The other little girl was a year older and followed directions well. While the girls danced, the other mother and I were able to discuss our experiences with the whole DS scene and discovered our daughters had many of the same therapists.

At the end of the class Adriana told us that they both did well and of course this is just a first class and the children are just getting used to everything etc. The other little girl will go into a group class on another day of the week. I thought my Donna Marie would be out of luck because she does not follow direction well and it is difficult to determine how much she understands, etc. (She still is very delayed in speech.)

However, the plan is that Adriana will work privately with Donna Marie for the same price as if she were in a group class! Donna Marie really seemed to enjoy the time she spent at the dance studio and Adriana was so warm and welcoming. We are looking forward to our next dance class!

WHEN does school start again?

Donna Marie’s summer school finished this last Friday and already she is in a deep funk.  She is so bored.  I tried to do some of the stuff they do in her class (some of the songs, routines, etc), but she just looks at me as if I may have lost my mind.  We try to go out but we can’t really do anything super fun (like the playground/beach) because I have her little brother (soon to 3) with us as well and they tend to take off in opposite directions. Plus I really have to stay on top of Donna because for example if she uses the slide, she will just sit at the bottom and not realize there is a whole line of kids waiting for her to move so they can go down the slide as well.  Basically we visit family or go shopping in double stroller.  Thank God I have this wonderful neighbor with a 4 year old son and sometimes we all go to the park and she helps keep an eye on my two because her son is much more independent.  I just feel bad because at times she seems to be miserably bored.  Her younger brother manages to entertain himself even though he is 14 months younger.  Any suggestions anybody?

Lastly, I don’t mean to be advertising private services on this site, but I have to mention this fantastic photographer based in Brooklyn.  What makes her so great is that she will put NO time limit on the photo sessions she books with you or your child.  She is great with kids.  She is willing to travel to your location if necessary and she is incredibly patient and talented.  Her work is absolutely beautiful and her prices are totally reasonable.  Check her out:  arphotography.us

Eye Remedy

Like many children with DS, Donna Marie has very tiny tear ducts. Some children have surgery to correct this problem. Donna Marie’s situation does not require surgical intervention. Her opthomologist recommends massaging the corners of her eyes several times a day to facilitate drainage. Our little problem is that often Donna has what can only be described as eye “crud” around her eyes in the morning. Thus every morning began the battle between me and Donna Marie. I would be after her with wipes, wash cloths, soapy water, eye drops, even baby oil in an attempt to remove the eye crud. She in turn became the most powerful child with low tone in the universe. Her eyes would scrunch up with the strength of an olympian athlete. If there was an olympic event for keeping your eyes shut tight she would win the gold. It wouldn’t even have to be Special Olympics. I am talking the regular Olympics here. If the eye crud is not properly removed and she goes to school we run the risk of it being mistaken for conjunctivitis (pink eye) and her having to be sent home. I never thought of asking our opthomologist what to use to remove the crud. Last week, my mom went to her opthomolgist because she was is going to have cataract surgery this week. She was instructed to put a few drops of baby shampoo on a piece of gauze and wash her external eye this way daily a few days before the surgery. Hearing this, I put a blob of baby shampoo (undiluted) on a baby wipe and VOILA! the crud amazingly just glides off. It does not seem to irritate her eyes or skin at all. I just wipe with another clean wipe after all is removed. We have been doing this for several days now without any adverse problems and her eyes never looked better and our morning battles are over. I hope this will be a help for others experiencing the eye “crud” phenomenon.

Ronald McDonald House

I can’t say enough wonderful things about the Ronald McDonald house where my husband and I stayed during Donna Marie’s hospital stay. (She got to enjoy the house a bit after she was discharged from the hospital.) The place was absolutely wonderful and all the volunteers that work there were fantastic. Each night there is even free dinner for the guests prepared by various volunteer groups.

REPAIR OF CARDIAC CONDITION A SUCCESS !!!!!!

The repair of Donna’s atrial septal defect and PDA was done by cardiac cath on Friday and she was back home by Saturday afternoon.  She is back to her old self.  Thank you for all your prayers, posts and concern.  I’ll post more details soon!

REPAIR OF CARDIAC CONDITION BY CARDIAC CATH A SUCCESS !!!!