It’s strange but I still remember the little details of that day.  It had been a few days since we got the phone call from our doctor confirming that Lucas had Down syndrome.  My brother had flown in to spend some time with us and meet Lucas and as a gift he took photos for us.  Most of my day was spent trying to nurse Lucas, our nursing sessions were lasting an hour to an hour and a half, it took extreme patience and was exhausting. That day, between nursing sessions, we headed over to my mom’s house and watched a movie and then when Lucas was asleep, we headed to the room in the basement for the photos. Lucas was propped in a bowl of yarn, put on a chair and in a basket all the while snoozing away. During the photo shoot my brother had me hold Lucas’s head in my hands and my husband hold Lucas’s body in his hands. I remember looking at my husband’s arm with his hospital bracelet still on but not able to ask him to remove it.  He had told me earlier that week that he wouldn’t take it off until he knew, he was wearing it with intention.  For some reason that bracelet held hope for him, that his son would be healthy and typical. But here we were a few days in and that bracelet was still on. The sight of it made me lose my breath and my heart ache. I felt such conflicting emotions just at the site of it, both wanting him to take it off and keep it on forever.  I felt guilt for cutting mine off as if that was why my son had Down syndrome. Sometimes grief can make you think crazy things, tangling logic and emotion. The reason I write of this seemingly insignificant moment is that my husband cut that bracelet off this very same day. I’m not sure what provoked it but it was as if with it’s removal came his acceptance of Lucas’s diagnosis. I think with his acceptance he found peace.  I can’t even begin to tell you how guilty I felt that it did not come so easily for me. Over the next year, finding my own peace with his diagnosis, would prove to be a tug of war.

I found that if I threw myself into Lucas’s development and researching everything I could about Down syndrome that it made it easier. I started blogging and writing and I started to feel better.  Our lives returned to an almost normal but I couldn’t stop thinking about my son and his diagnosis. I thought and talked about him 24/7. I had to get him to the next milestone and be reading about the most up to date therapies for kids with Down syndrome. It was intense and stressful, thinking and feeling this way. Without realization I was labeling myself one dimensionally as “mother of a child with Down syndrome.”

I think what ultimately helped me was my camera, as strange as that may sound.  My dad bought me a subscription to Flickr and I just started snapping away.  I found so much beauty in my son and I wanted to share it with everyone and photography proved the perfect medium.  He was an amazing little subject and I captured his every milestone. This is when my love for my son, my acceptance of his diagnosis and love for a long forgotten hobby intermingled. Photography ignited a passion in me that was just waiting to come out and in a way it helped me heal. Slowly I started to remember that I was a person with more then one attribute, that we were a family, that there was life beyond this obsession of mine.  I started to think less about Down syndrome and more about the other details of my life. And I became happier and finally found the peace and acceptance that came so easily for my husband. Now this isn’t to say that I don’t still think about Down syndrome, of course I do and I still want the very best for my son.  I am just finding ways to fit it all in equally and in a healthy way.

So if I could talk to the past Erin, I would confirm what she already knew even in the haze of grief.  That this little boy was going to change her life forever. That he would capture her heart in a way that only a child can. That she would love him fiercely and protect him fiercely. That on bad days his smile would make everything brighter and his captivating personality would attract people around him where ever we would go.  That she will cherish the sweet snuggles and kisses from this little boy whose innocence and kindness emanates from every bone is his body. That he would change the way she looked at the world and at people and ultimately make her a better person. And then I would give her a big hug and tell her to take her time and grieve because you can’t rush grieving, but that there would come a day when she will realize it’s all ok, that it’s so much better then ok.

Erin G

I believe that being the mother of a Down Syndrome child has made me so strong. I have had to stand up to educators and doctors and the like to make sure that Grant has the same rights as anybody else. My philosophy has always been that Grant should have the right to try anything he wants and nobody should stand in his way. Grant was able to get his driving permit several years ago. So many people told him that he would never be able to get his permit, but he worked hard with the help of provider and he passed the test! He doesn’t seem very interested in getting his license but he is very proud (as he should be ) that he has a driving permit and he is able to drive when he wants, as long as someone is with him.

Grant started his own lawn mowing business a few years ago and he is constantly looking for new customers. He has acquired 4 lawnmowers and the free services of his mom and dad to help with the labor. But he does give raises

Grant has had the privilege of meeting and playing with many of the athletes he looks up to. He will spend hours studying basketball games to get moves down so when he has a basketball game he can do his moves just like the Nuggets. Many years ago he met John Elway and has several autographed items from John Elway. He is now hoping to one day meet Tim Tebow!

There is so many things that I could tell you about what I’ve learned, what others have learned and what Grant has accomplished so far in his life. But the biggest advise I have for parents, is NEVER let anyone tell you that your child CAN’T.

Charlene

February Event

What:  Bowling Party!   Pizza and sodas will be served.

Who:  CSDSA members ages 13 and up plus one guest are free

When: Sunday, February 19th from 1 pm to 3 pm

Where:  Mr. Biggs, bowling alley.  http://www.mrbiggsffc.com/

RSVP:  to Lori Dewhirst 719-533-0625 or Daina Beck  dainabeck@aol.com

$12 for additional guests.  Gluten free option available, just let us know with your RSVP.

CSDSA is not able to provide transportation to or supervision at social events.

CSDSA The Adult Group (TAG)

February Event

What:  Pool, Foosball and Darts Party!   Appetizers and sodas will be served.

Who:  CSDSA members ages 21 and up plus one guest are free.

When:  Sunday, February 26th from 2:30 to 4:30

Where: Phantom Canyon, 2nd floor.  http://www.phantomcanyon.com/

RSVP:  to Sherry Somers 719-630-0689 or Daina Beck  dainabeck@aol.com

$5 for additional guests.  Gluten free option available, just let us know with your RSVP.

CSDSA is not able to provide transportation to or supervision at social events.

We think Alexander, our eight year old with Down syndrome, has celiac disease.  I say we think because I refuse to put him back on gluten for six weeks to do the endoscopy to officially diagnose. If you lived with Alexander, you wouldn’t want to put him back on gluten either!!

This process of discovery started in 2007.  I took Alexander so see a gastroenterologist because he was continuing to have stomach (constipation) issues and I really didn’t think having to give him a suppository every three-four days and sitting with him for an hour in the bathroom so he could poop was “normal” bowl functioning.

The Doctor was condescending but did give Alexander a blood test to check for celiac disease and scheduled Alexander for a diagnostic test for Hirschsprungs.  That test was negative but they never called me with the results of the celiac panel so I assumed they showed nothing.  Three months later I followed up just to get a copy and the Doc says the results were inconclusive.  The two key indicators; the Transglutaminase IGA AB and the Endomysial AB (IGA) were both negative.  Two other indicators were positive, the Gliadin AB IGA was 25 (negative is 11 or less) and the Gliadin AG IGG was >100 (they stop measuring at 100). We did an endoscopy which was negative. The Doctor didn’t explain much about the procedure and I didn’t think to ask too many questions at the time (I knew nothing about celiac disease at the time other than knowing about 50% of individuals with Down syndrome are thought to develop celiac disease at some point.)

I thought his blood test was interesting.  I asked questions about these numbers but was quickly told that the IGG was unimportant and obviously a false positive and didn’t relate to anything.  It didn’t make sense to me but I bought it at the time.

Move forward in time to August 2010 when his pediatrician ordered a lab panel to include his kidney function and a repeat celiac panel (we were still having problems).  Low and behold, the celiac panel came back with EXACTLY the same numbers.  The IGG was still ridiculously high.  His pediatrician didn’t know what that meant but referred me to a different gastroenterologist.  It took three months before we could get in to see her and I was again disappointed.  At no time during the appointment did she ask anything about his diet or what he was eating.  She told me to feel free to give him more mirilax if he wasn’t regular enough but thought it might be worth repeating the endoscopy to check again for celiac.  She had not seen the pathology report from the previous visit and did not even ask to see it and she could not tell me why, if the lab values were exactly the same as 2.5 years before and the pathology was negative, why would she expect a different result this time around.  One would have thought if any thing had changed on the inside we would have seen a change on the blood work.

My husband and I decided not to repeat the endoscopy (Alexander doesn’t need anesthesia if he absolutely doesn’t have to) but I decided to start a gluten free diet in January 2011. I could tell that Alexander was not absorbing nutrients like the rest of the family.  We all take a whole food supplement which has been scientifically proven to boost the immune system but Alexander was still getting sick and the rest of the family were not.   My husband was not keen on the idea of Alexander going gluten free.  He felt we were likely to see some positive benefit and then I would decide Alexander should be gluten free for life and if he didn’t REALLY need to be this would create another burden for Alexander that he could do without.

At first the special education case manager and the paras at Alexander’s school wanted me to put him back on gluten because they were seeing no benefits at school but at home we quickly saw changes, for the better, in his behaviour.  Within just a couple of weeks these changes were obvious to those at home as well as at school.

At the beginning of March, 2011 we had a follow up visit with the gastroenterologist.  I had requested that we determine if he had the genetic make up for celiac disease because if that was negative then there would really be no need for the endoscopy.  The Doctor had wanted to repeat his celiac panel lab work but he would have had to have been consuming gluten and again, I didn’t want to do that. She did, at the last minute, decide we would repeat the panel even though he wasn’t consuming gluten and the results really surprised her.

The genetic test for celiac, the HLA DQ2 and DQ8 were both positive but more amazing was that the Gliadin IgG, which had been at over 100 was suddenly at 7 and his Gliadin IgA was now at 2.9 and that had started at 25.  NOW, the Doctor, who also thought that the elevated IgG had been insignificant, thinks he has celiac disease.  Go figure!!!!

Even more interesting was that I had picked up a free magazine at vitamin cottage and there was a fantastic article on allergies.  here is what it said:

“Unlike immediate or immunoglobulin E (IgE) food allergies, which cause more obvious emergency reactions, delayed food or immunoglobulin G (IgG) allergies – more accurately called food intolerances – may not surface for hours or days and can cause less severe symptoms like wheezing, coughing, nasal congestion, skin rash, or digestive change.  Because many people never associ ate these warning signs with foods that they eat, they don’t realize the burden they’re placing on their immune system.

Common IgG culprits include dairy, wheat, corn, soy, yeast and nuts. ”  Says Michael Smith, ND, a naturopathic physician.

My Husband is now also a believer and is working hard to keep Alexander off gluten.   We went to the Pirate Exhibit and the Natural History museum and I let Alexander eat a chicken dish.  After I also ate some I realized it had a flour sauce.  The next morning Alexander cried for an hour that his stomach hurt and I ended up an hour later with poop all over my kitchen floor – which brings me back to the beginning of the article.  Some days you have to be ready to clean poop out of the grooves on your kitchen floor….

[This blog post was written by CSDSA member Suzanne Faber. You can find more about the Faber family journey at http://lifewithanangelisfun.blogspot.com]

To prepare for this blog and, ultimately, how I personally plan to celebrate World Down Syndrome Day, I spent hours on the internet looking at different sites.  I wanted to understand what 3/21 means to me and my family—how, in a single day, could we promote the awareness of something that has touched our lives so deeply?  After all, this is our reality now.

I thought about the word “awareness” in a new way.  You know how sometimes you look at a word that’s spelled correctly, but it just doesn’t look right?  In that same sense the word “awareness” didn’t feel right in the context of something that silently permeates every second of everyday.  Do I invite people to spend the day with me in order to be “aware” of how Down syndrome affects my family’s activities?  Because, really, what would they see that’s any different from a day in the life of any other mother of a 15-month old?  I change diapers.  I make bottles.  I play fetch (not with the dogs, to their dismay).

Awareness is cognizance, comprehension, consciousness, familiarity, and perspicacity (my favorite only because I can’t pronounce it).  So awareness basically means “knowledge”.  Could I promote awareness in my community by providing knowledge?  I immediately had thoughts of my college Philosophy course and the hours of lectures I sat through not understanding a single word.  Well, I found quite a few websites that could accomplish that.  So maybe I can just send out an email to everyone in my address book with links in it that would promote awareness of Down syndrome and say, “There.  Done.”  But then on 3/28 everyone would end up like me a week after my Philosophy class ended…with no memory of anything I had learned the entire semester.

How could I effectively spread a message that I could feel but not vocalize?

I dug deeper and found some more synonyms for the word “awareness” – admiration, affection, appreciation, enjoyment, acknowledgement, fellowship, recognition, intelligence…now these are words that resonate.  They are three dimensional words that envelop me in a warmth that inevitably causes me to break into a smile within seconds.  The loving affection I feel when I see a picture of my son or watch him play with my sister.  The comforting fellowship I feel when I talk to my friend Catherine or read her son’s battle log.  These words evoke feelings, memories and emotions…something that comprehension just can’t do.

Aidan’s Down syndrome has changed my life because it has changed ME.  I didn’t change because of the knowledge I gained of Down syndrome.  In fact, I think too much knowledge is dangerous sometimes.  Anyone who knows me understands how too much knowledge can cause a worrier like me to dwell and turn inward.  And turning inward could make me miss so many amazing things with Aidan!  The shift that occurred within me started as a need to sort myself out emotionally and be strong.  It’s evolved into a patience and strength that makes me look in the mirror wondering what happened to the weenie who used to avoid all of the “hard stuff”.

Awareness is my ability to be present for every second in my life.  Awareness is experience of being the parent of a child with special needs but not really knowing what that means.  It’s the peaks and valleys of accomplishments and struggles.  It’s understanding how to admire Aidan for his determination and focus, appreciate all of the people we have in our lives who are committed to Aidan’s success, enjoy every wave, head butt and ‘dada’, and acknowledge that I don’t have to know everything right now.  Awareness is the affection I have for Aidan, my husband, our families, our therapists, our providers and our friends who have rallied around us and cheered Aidan on.

So how am I going to promote awareness on World Down Syndrome Day?  I am going to affect, admire, appreciate, enjoy, acknowledge and recognize all of the JOY I see in my son every day.  I’m going to surround myself with people who are accepting, welcome questions, and try to help people feel what it’s like to be me…the mother of a beautiful son who sees the beauty in everyone and everything…a son who can find joy and evoke joy in every second of every day.   That’s the beauty of Down syndrome.

Sally

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