Updated Pages

Besides overhauling my blog (which I have been wanting to do forever), I finally have begun to add individual PAGES across the top.  Please, please, please, feel free to link them, email them, post them on BabyBump or BabyCenter forums as you see fit for other new mothers or mothers-to-be facing a diagnosis of Down syndrome. 

I am not finished adding yet.  I have added a preface to Cameran's birth story before linking it to the original post as well as a page with answers to questions I have been asked recently on various pregnancy boards.  In addition, I am working on links to various celebrities who have personal connections to individuals with Down syndrome or who advocate for our enhanced children. 

I will leave you with a smiley rainy day photo montage of Miss Peanut :)

Q & A for Mommies-to-Be of possible baby with Ds

Here are some questions I have recently been asked on various message boards about what its like raising a child with Down syndrome.
1. With your daughter what challenges do you face?

She is our first child, and I believe that helps that I don't have an older child to "compare" her to. Sure, I see her developing at her own pace compared to "typical" (the PC term for children without syndromes or other exceptionalities), but that is par for the course with us. Cameran does things at her own pace, so patience is key. But we celebrate like there's no tomorrow when she hits a milestone because they are that much more special. 

http://www.ndss.org/images/stories/NDSSresources/developmental_milestones

We have been fortunate (overall) with Cameran's health. A main concern is that of various heart defects, all with varying degrees of severity. Cameran has what is called a small (barely measurable) PFO, and is monitored once a year. She has not had heart surgery, which sometimes is necessary. Although we avoided heart issues, Cameran did develop seizures around a year. She was treated vigorously for about three months, and has been seizure-free since, and also is medication free. Cameran sees various other specialists, including an Ear, Nose, and Throat Dr for recurrent ear infections (pretty typical), she sees a pediatric opthamologist and has a pretty cute pair of glasses that we wear occasionally for a bit of far-sightedness.

Any child with a developmental disability, whether physical, chromosomal, or other, is entitled to early intervention services. We are fortunate to live in Pennsylvania where they are 100% covered. This has never been an issue for us. Her physical therapist, occupational therapist, developmental therapist (helps with social skills and play imitation) come to our home or to Cameran's daycare. And yes, Cameran is in a regular daycare setting with typical children.

Are these challenges? I suppose to some. We just do them because it's what you do. Most communities have active Ds associations. Cameran has a playpals group that meets once a month for arts and crafts, singing, and snack. It's also a great chance for parents to get together and talk. Buddy Walks are great too.

Put it this way, most geneticists (yes we went to one after Cameran's diagnosis and we are fortunate to live 40 minutes away from Hershey Medical Center) will tell you that once a mother has a pregnancy (whether she gives birth or terminates is irrelevant) where Trisomy 21 or any other Trisomy is present, her odds statistically speaking automatically rise to 1:100 unless her age advances the odds to even greater. So I was 27 when I was pregnant with Cami. Then my odds (depending on where you get your info) were roughly 1:1100. I chose no testing, ultrasounds picked up nothing, and Cameran wound up being the "1" in that 1100. Did that stop us from getting pregnant again knowing that now our odds are 1:100? No. I am due September 9th. I suppose everything is simply a matter of perspective.

2. How has having a child with special needs affected your family's lives?

Well, I have no clue how it will affect our little girl who has yet to come. I do know that all of the families I know, both in real life and in the bloggy world, who have multiple children and one has Ds are happy and do very typical things. Some have an oldest child with Ds, others a middle child, and some the youngest. I don't really think about how it has impacted my family's life because we just do it. This is our life, and we are living it to the fullest. I know that there is a higher incidence rate of divorce for couples who have children with disabilities, and that it is important to still take time for one another, just as you would having any child with or without special needs. I also know that we have an awesome support system of family and friends. My husband's family lives out of state, but my parents are about 40 minutes away. It also helps that we are both in education. My husband is a guidance counselor and I teach language arts. Both of us have had special education training.

Personally, survival to me means not looking too far into the future, because that is when I tend to get overwhelmed with the "what ifs", much like mommies-to-be are doing when they are fretting about the "what ifs" for their unborn babies. I do know that it is not fair to "expect" this new baby of ours to "take care" of Cameran once we are gone. We are in the process of setting up a living will, and it all goes back to the wonderful support network we have in place. Looking back, hubby and I were in shock after the diagnosis, wallowed for 2 weeks or so, and then realized that life is too short to feel sorry that we did not "get" the baby we expected.  We prayed, we talked, we got our sh*# together, and moved to the place of acceptance where Cameran is not Down syndrome; Cameran has Down syndrome. It does not define her entire being, it is one facet of her make-up. We (and others) can choose only to see the T21, or to see Cameran, as a whole unique individual.

You will hear a lot about "people first" language in ANY special needs community. Some people are fanatical about it, some just go with the flow. I am more the latter, but will impress the point without trying to come across like a bi%#@ ;) Case in point: my friends don't come up to me and say "How's Cameran's Down syndrome?" or "Jen, yeah she's the mom with Down's kid..." Cameran is a person with Down syndrome, she is not a "Down syndrome kid". Also, in the United States, it is "Down syndrome". No "s", and lowercase "s" in syndrome. Not a big deal, just a tidbit.

3.  Is there a financial burden involved with having a child with special needs?

I always joke that Cameran's Ds diagnosis has actually saved us money. Despite the fact that she has umpteen doctor's appointments, a child with a diagnosis such as Down syndrome will receive supplementary insurance (Medicaid), or for a family who does not otherwise have insurance or has insurance that is not very good (for lack of a better term) Medicaid will serve as the primary. For example, we have Highmark BlueShield. It is ALWAYS listed first. Hubby and I have a $20 copay. Cameran is on this insurance. Without having Ds, Cameran would also have a $20 copay per office visit. Coupled with Medicaid (We use United Healthcare, formerly Unison), we pay ZILCH as long as her Dr is in-network. The only Dr. we have a copay for is her Ear/Nose/Throat Doc because we CHOOSE to go out of network bc the ones in network are not that great. Cameran had pneumonia in early March, went to the ER, and was admitted for 2 nights. Paid nothing.

I by no means am trying to glorify this, but between early intervention services and Medicaid, there is truly no financial burden for us. The only thing I purchase extra, and at this point, BY CHOICE, is Pediasure, to ensure she is getting extra calories and nutrients 'cause girlfriend is a long and lean toothpick.  Does that mean all families are this lucky? Probably not, but I am simply speaking from our experience here in Pennsylvania.

4. Has having a child with Down syndrome caused any relationship issues?

As I mentioned before, the hubster and I were in shock for a few weeks after Cameran's birth. We have amazing friends and family who were our rocks during this time. We have regular sitters (both family and friends) who watch Cameran so we get alone time. There is nothing that Cameran can't do that a typical child can, it just. takes. longer.

********************************************************************************

By nature we want to "fix" things so we can continue with our status quo, whatever that may be. There are no certainties in life. Car accidents, tornadoes, plane crashes, etc., are all out of our control. We all want a perfect baby. I wanted a perfect baby. Cameran is a perfect baby, but in a different way. Any of us, Down syndrome or not, could go on to have our child be diagnosed with autism, which now has reached, according to Autismspeaks.org, the alarming diagnosis rate of 1:110. We can't do anything to stop that rate from climbing. Sure, depending on beliefs we can stagger vaccinations, or drop them all together if we are in the camp that vaccines are the cause (sidenote-I don't buy into that and it has been debunked but that is a whole other can 'o worms and a debate that isn't my cup 'o tea). I guess my point is, we can't take ANY test to predict whether or not our child will develop autism, yet we aren't afraid to get pregnant.

************************************************************************************

Moving on, here are some quick resources to use while you are making the right decision for you and your family...


Here is a website that is very user-friendly and accurate--

www.ndss.org (This is the National Down syndrome Society)

The specific portion "about down syndrome" is a link that very objectively goes through some statistics, health concerns, and common myths associated with Ds. Also, the link to "My Great Story", shares stories from families and individuals with Down syndrome that covers various aspects of life.

My absolute favorite blog to follow is www.kellehampton.com.

Kelle coincidentally just attended the NDSS luncheon in NYC this past Wednesday and her most current blog post goes into candid detail about this event. She has links to the Birth Story of her daughter, Nella Cordelia, that chronicles her path to finding peace with Nella's postnatal diagnosis.

This link shares an article by Melissa Riggio, a young adult with Down syndrome.  http://kids.nationalgeographic.com/kids/stories/peopleplaces/downsyndrome/

Finally, here is a clip from this week's NDSS luncheon, featuring Kelle Hampton speaking about the birth of her daughter and her family's postnatal diagnosis.

*Fear of the Unknown*

I have wanted to write a post on this topic for some time now and have put it off for a variety of reasons.  Will I offend someone?  What if words are taken out of context?  Yada Yada.  But you know what?  This is my space, and it's being written.  So here it goes...

A few weeks prior to my level II ultrasound I was fiddling around with some new apps for my iPhone.  One I came across was BabyBump, much similar to Circle of Moms and The Bump.  I have been receiving weekly updates, etc.  What I became drawn to were the message boards, specifically the Tests and Checkups and the High Risk Prengancy forums. 

It became clear that many mommies to be in the Testing forum are nagged with worries about the "statistics" regarding their little babies. 

Certainly one's personality and possibly her belief system play a role in deciding how much prenatal testing to undergo. 

For the most part, I can be laid back.  I was young, 27, when I was pregnant with Peanut.  Because of our belief system, coupled with not wanting to do any unncessary worrying, we chose not to have prenatal testing, including the early screenings, other than ultrasounds.  Guess what?  I had a stress free pregnancy.  It was great (minus the horrid morning sickness).

Other mommies to be couldn't/wouldn't want to take the avenue that we chose.  I respect that.  To each his own. 

Fear is the hidden monster that consumes our thoughts when things *might not go as planned*.  Did I ask God to give me a child with special needs?  Nope.  Did I ever in a million years think I "could handle" having Cameran prior to her birth?  Nope. 

Guess what?  He did and I am.

90% of children like Cameran are aborted usually due to a "possibility" of Down syndrome.  Some of these babies would have had Ds and others would have turned out perfectly fine. 

Of course the majority of doctors have limited experience dealing with Ds and wind up giving outdated information which winds up scaring new mommies. 



So here is where I get a little baffled...

Statistically speaking, chances for having one's child be diagnosed with autism (found here) are higher than most any mommy-to- be's, regardless of age, chances of having a baby born with a chromosomal abnormality.  Yet, we still get pregnant every. day. 

100% of children with autism are here, and 100% of mommies have to deal with their diagnosis.  No prenatal chances, odds, or confirmations help these mommies decide what to do prior to birth.

So what makes the fear of Down syndrome and other trisomies greater than the fear of a possible diagnosis of autism after a child has been born?

Catching Up

Since the transplant there have been many topics I've wanted to blog about, but haven't gotten around to posting. I don't know if it is my procrastination or the fact that I want to have the idea solidified in my mind before keystrokes begin.

In any case, this is more of a stream of conscious catch-up of the first two weeks of April.

My mom's kidney is functioning well. Her recovery is slow, and she is still weaker than pre-surgery, but is continuing to recover.

Cameran is now a full-fledged "walker". Sure it looks a little sketchy, but I would say by the end of the first week of April she became consistently determined to walk. She has perfected crawling, in true Cameran fashion, waiting until she could do it proficiently before showing off. No army crawl for this girl. It's the real deal. When she stands and wants to turn it is hilarious because it is like she is doing the one-footed pivot until she completes a circle and gets turned to where she wants to go.

She even did some great walking with her Special Instructor earlier this week...outside...on grass...on an incline!!

Around the same time the walking began her first bottom front tooth began its emergence into the light. Two little ridges now poke through. Slow and steady. The 2 1/2 toothed 24 month old.

I need to post separately about going to Princesses on Ice. We went with some friends on April 2nd. Girlfriend LOVED the show, and even stayed awake until the last princess at 8:45!

                                                                    Driving to Hershey.

Did I mention she sat in her own seat, courtesy of my friend Heather and my knees holding her seat down since apparently 21 lbs isn't enough weight to do the trick and she folded up in the seat at first!
Last weekend was Ds PlayPals.  Many of our friends were off at CHOP for a Ds conference, but we had fun with two other little friends and even made a field of Easter bunnies during craft time!

ENT appointment yesterday was uneventful. Cameran was given ear drops to decrease the swelling in the ear that has been persistently bothering her.

                                                         Why does she look so grown up?
Hubby passed his Master's Competency Test! Graduation is set for May 21, and his parents are planning to fly in for the ceremony. I am so proud of him (even if I did have to slave away writing proof-reading his papers.)

On a whim last night I decided to call a local ultrasound center to get this baby's gender figured out. I keep thinking that although Wednesday is only five days away, it will be nice to know the gender prior to a Level II ultrasound appointment where they are going to be more concerned with looking for abnormalities than finding out the gender. I am more than a little scared for what Wednesday will bring being that it is really the only glimmer of our odds of knowing whether this baby is totally healthy or also has a little something extra. Either way, ultimately we are still blessed considering we are going to have not one, but two children after being told not a chance...So...here's to hoping for good health and a typical sibling for Cameran to emulate as she grows up. (And yes, there is a gender preference, but I am not even going there being that the first time around I said I just didn't want an ugly baby. Wish granted with an extra helping of genetic make-up ;)

She is pretty darn cute...

 Even when posing as a disgruntled librarian...

I will leave you with Cameran's favorite new face...

Firsts and the Future

You know how when you want your child to do something/say something on cue it never works out?? 

Case in point...I went to pick Cami up from daycare yesterday, and upon arrival her daycare room teacher J, who I love, said that she took 3 or 4 steps yesterday unassisted!!! I tried like crazy to get her to do it for Ryan and I at home but she just got her sassy grin, and would drop and crawl.


She is also eating all sorts of new foods.  Her two (and only) teeth (both top molars) are coming in handy for pot roast, unpureed veggies and fruits, bananas bitten from the peel, Goldfish crackers, and other crunchy items.  She will pretty much crawl after whoever is closest and currently eating.  Now we need to get to the self-feeding part.  Slow and steady, slow and steady...

Baby #2 is still kicking ;) I am 14 1/2 weeks. Thought I would be finished the happy-go-pukey stage, but that isnt the case at all. I actually got to work (7th grade) and ran like crazy to the bathroom and lost it during homeroom earlier this week. Not cool.

They are sending me to our maternal/fetal medicine unit this time for the 20 week ultrasound. We passed up all the testing once again. I was afraid they would give us a hard time because of Cameran and an apparent increase in odds, but oh well. We were never supposed to get pregnant without IVF in the first place, then Cami came along. After Cami, we figured it wouldn't happen again, but if it did then it was obviously God's plan, and so I (foolishly?) didnt go back on birth control. In any case, bam...September 9th is on its way.

I would be lying if I said I am not petrified. I obviously know that there is a chance this cherub could have Ds or some other issue, and I will be okay with that, but I want more than anything for Cameran to have a typical sibling that she can grow close to and have to model behaviors and to learn from as they both grow. I know that I can't expect this sibling, if she is "typical" to be Cameran's guardian later in life, but I hope and pray that they are close enough that it is a non-issue. I really try to live in the present and not dwell on future but this baby makes me think of ALOT of potential issues...sigh.  Everyone tells me that it will never happen twice, and there are quite a few other mamas who currently pregnant with their second child after having the first with Ds who seem to all be "good to go" right now.  I just can't imagine that all of us will come out of this being in that 99% of "everything's okay".  So I worry.  Not a lot, but off and on...So if you feel compelled, please pray for us. 

In other news, my madre's kidney transplant is still on for March 29th!  Pray no one gets sick between now and then and for wisdom and guidance for the surgeons that day.

:)  Happy Wednesday

Imagine the PossABILITIES

Tomorrow we travel to Philadelphia (as long as Cameran is feeling better) to attend a self-advocacy Down syndrome conference.  Karen Gaffney, Sujeet Desai, and two other self-advocates will be keynote speakers and then the day will be spent cycling through mini workshops to get to know these individuals and their successes and advocacy goals.  I am excited to learn first hand from individuals with Down syndrome.  Ryan and I are driving up either tonight or early tomorrow.  I hope to take pictures!  Anything to help advocate for this little sweetie is right up my alley, and I am thankful to our local Down syndrome group for sponsoring our ability to attend for free.

An Honest Look at Stereotypes

If you do not have a family member or a close friend connecting you to the world of Down sydrome or any other special need for that matter, then it is difficult to imagine what life for an individual with Ds or his/her family is like.  Stereotypes are human nature.  Most of us who are now parents of a child with special needs would be lying if we said we were totally comfortable around people with special needs/disabilities prior to being catapulted into our new normal.  Some of us got here knowing ahead of time that our child may or would have special needs while others (myself included) did not learn until after our journey began.

This blog post is a candid look at one "outsiders" learning experience as he encounters a young woman with Down syndrome at his local Starbucks.

Please click here to experience this man's outside look in.

Pay It Forward

I have referenced Kelle Hampton's blog before, and I am going to once again.

Yesterday via Facebook, Kelle requested pictures of children with Ds from parents to be featured in a new fundraising effort inspired by her beautiful daughter, Nella's first birthday. 

You can click here to see Kelle's post describing her fundraising efforts to benefit the National Down Syndrome Society (NDSS).  Featured in this post are many other gorgeous individuals who happen to have Down syndrome.  Cameran is among these photos. 

A direct link to donate to Nella's ONEder fund, to benefit the inclusion and acceptance of individuals with Ds can be found here. Or you can click on the banner at the top of Kelle's page. 

If nothing else, please stop by to see the warmth of the smiles and depth of the beauty each of these children possess.  Children like Cameran and Nella will thank you.

123 ABC ASD ...PFO

Confused already?

My life is filled with acronyms.  Between life as an educator and life as a Down syndrome parent, there are more acronyms than spaces in my memory to store them. 

Luckily there will be some overlap in Cameran's future, so I have a head start over parents who perhaps are not in education or psychology job fields.

SDI, DI, IEP, IFSP, LRE, PLC, RTI...

IFSP, PT, OT, SI, SLP (wish that one stood for sleep)

And then there's the added medical jargon, also chock-full 'o acronyms...

MRI, EEG, ECHO, EKG, ENT, MO, GI, BP, PA, ASD, PFO, BPS...

It's a wonder I don't go crazy with all of these abbreviated terms!

Anyway, Cameran is feeling a little better.  Her fever topped out at 101.6 on Monday night.  I was hoping and praying that we wouldn't need to cancel the cardiology appointment.  Thankfully, Cameran slept through the night and woke up all smiles and fever-free.

I was able to leave work in order to backtrack to C's daycare and then turn back around to trek to Harrisburg for the appointment.  Traffic was horrendous along the main roads in H-burg, and we arrived a few minutes late.  Luckily they didn't mind, and we went back within ten minutes of our 2:00 appointment.

From there, Cameran was weighed (19.6 lbs..the kid won't gain weight) and measured (21 1/4 inches...at least she's getting longer).  We then went back for an ECHO-ultrasoundy kinda thing.  The tech was awesome, and he sang to Cameran while he did his thing.  You know how techs are not allowed to "interpret" images?? Well, this dude rocked.  After singing Cameran's praises for cuteness factor (I agree) and mellowness (a word??) despite feeling sick, he said that things looked good, and things were small enough that he couldn't get a measurement.  We then proceeded to wait for what seemed like an eternity before Cameran was hooked up to her EKG.  Overall she did well, only crying when the sticky tabs were pulled off.  We ended with a blood pressure check and the wait...

We waited and waited.  A PA came to speak with us while we continued to wait for the doctor.  She explained that everything looked fine, and that Cameran does not have an ASD like they first suspected, but instead has a PFO.  Her Branch Pulmonary Stenosis has resolved itself. 

So instead of this...

where an actual piece of tissue is missing and needs to grow shut....

Cameran has this instead...

...which is actually pretty sweet because it was so small (less than 4 mm) that they could not even measure it!

Apparently 1 in 4 people has a PFO, and they often resolve themselves, or cause pretty much benign irregular heartbeats and sometimes mild murmurs.  In any case, it is continuing to improve, and it is AWESOME news that it is a PFO.  Even if they were still thinking it was an ASD, it still would be just a case of monitoring. 

We are very blessed.  This was an excellent early Christmas present!

Sayonara Cardiologist (until next December)!

Oh the Possibilities...

The link for the full news article is here.

It makes my heart swell to see how teenagers can rally with love and support amidst the sea of cliques and popularity contests of high school.  This school district is a neighbor to my home district and my teaching district.  This is just one of multiple examples of how our schools provide inclusive environments to our students with special needs. 

It is stories like these that put my mind at ease when my brain enters the "what if..." realm of future worries.  Just another reminder of how we need to make the most of each moment.

But it is kinda cool to picture Cami in a cute little cheer outfit ;)

Major Award

You know how in A Christmas Story Bob, the dad, wins the leg lamp as his "Major Award"?

Well, it's Christmas time, and I feel like I have won my own "Major Award", except it's way cooler than an ugly lamp.  I get to share my personal experiences of life with the coolest person ever--my daughter Cameran--with even more people!

Jessica over at Four Plus An Angel decided to do a Friday feature, unveiling a new mommy (or daddy) who is traveling her (or his) own personal journey through life as a parent of a child with special needs and wants to share the journey with others.

So thank you, Jessica.  What a fabulous idea.  I love my Major Award, and I am honored to be your first Friday feature, showing that even though there are a few added challenges to the daily schedule of the Gerbers...

If you have a minute and are not already familiar with Jessica's blog, stop on over and say hi!

Happy Friday :)

Early Intervention Personal Perceptions

I am not one the parents with children who have extra needs who dislikes Early Interventions (EI).  In fact, anything that may help Cameran I am all for.  I am at a place where I neither feel jilted nor jaded by the EI system.  In fact, reading other blog posts has actually made me aware that we have it pretty stinkin' good in Pennsylvania.  One hundred percent is covered, AND therapists come to our house.  It is a win-win.  I have posted before that I think Cameran being our first child has helped because we have no basis of comparison.

And it's true.  The amount of evenings we dedicate to EIs and appointments is our "norm".  Even though it is sometimes annoying to need to rush out of work to get home in time to beat Cameran's therapists to the front door, it still is for the betterment of my daughter, and I couldn't live with myself thinking that I didn't do everything possible for her.  She is at daycare during the day, and they are wonderfully accomodating of all of her special needs and therapies.  In fact one way accomodate our schedule to fit in her therapies consisting of a Special Instructor (SI) similar to a play therapist, Occupational Therapist (OT), and Physical Therapist (PT) is to have them go to daycare one week, and to our home on the alternating week.  We have done this a variety of ways.  For a while, at home we had entire weeks off and Cameran was seen at daycare three times.  Now, for example, we have PT and SI at the house the same week that OT goes to daycare, and the next week it is just OT at the house and PT and SI go to daycare.  It really varies, and everyone is quite flexible.  I know it is also not that easy for everyone.  Our experiences have been exceptionally positive.  All three therapists are punctual, and if they do get stuck in traffic, always call or send a text message.  When sessions are missed due to unforseen circumstances on either end, we are quick to communicate, and make-up sessions always follow.

That stated, I also have not jumped on every bandwagon/homeopathic treatment available.  There is a lot to be said for NutriVene and other supplements being able to enhance individuals with Ds and their potential, however, because of Cameran's involvement with Western medicines due to her infantile spasm seizures, GERD, etc., I do not feel putting more foreign substances into her little body is of benefit now.  In the future, who knows?!

Basically I have found families fall into one of several camps when it comes to EI:
-those who are all for it, and if it helps, great, and if it doesn't, then at least it is one more person positively interacting with said child (This is my crew if you couldn't tell.  Would Cameran have been sitting up at X month without intervention? Who knows, but she did, she can, and EI surely did not hurt her.)
-skeptics who try and later bail, whether for financial reasons, personal reasons, or scheduling reasons
-larger families who have enough family members to keep the LO with special needs movin' and groovin' without the need of therapists
-those who think EI is bogus/waste of time either because they had bad experiences or just plain found it inconvenient
-those who are all about vitamins/supplements/alterna-therapies

I am sure there are more, but these seem to be the main sets of feelings regarding EI.  One is not more correct than the other.  I am sure if I had a family of six, and stayed at home I might feel differently about the value of someone coming into my home x times a week/month,etc.  In fact, the social interactions of a larger family alone are reason enough to rationally justify not needing a SI.  However, hubs and myself like to do parent-ish (I know, I know, English teacher using a non-word) things with Cami, and not always worry whether or not we are interacting in a way that is engaging her gross-motor skills, etc.  Sometimes it is nice to know that we can snuggle and kiss and hug her all evening long, and the PT will be out tomorrow to work on x,y, and z skill sets. 

Am I articulating well?  I am not sure. 

Bottom line: EI works for us.  It isn't for everyone.  I am not a judgemental person by nature, so to each his own.  Ryan and I have forged relationships with each of Cami's therapists, and respect them as teachers/therapists/sounding-boards-confidants/friends.  They have provided us with excellent connections and resources in the Ds community that we would not have known about otherwise. 

Cameran loves them.

AND THEY LOVE CAMERAN.  (Who doesn't want people doting on their child, expecting the best for him/her?)

Parallel Thoughts

Here is a link to a news article entitled "Insensitivity to Handicapped Individuals Demeaning" by Aaron Fichtelberg. 

It hits home in terms of his attempts at educating others about the unnecessary, callous, ignorant usage of the words "retard" and "retarded". 

I will copy and paste below for those who do not care to link to the original document...

It's going to happen again today. Somebody is going to publicly humiliate my disabled son.



It may be somebody I respect and admire, but it's just as likely to be one of my students or some snot-nosed teenager posting anonymously online. It could even be a close friend or coworker.

They'll call somebody a "retard" or "retarded." They'll say it to a friend over the phone in public. They'll post it on Facebook. They'll send it to me in a text. They'll use it in an answer for a question on my midterm. They'll be oblivious to what they're saying.


It's an easy word to say and it's just as easy to forget what it means. I used to say it too. I was probably worse than most people-for cheap laughs I would bend my wrist and tap it to my chest in mockery of a person with cerebral palsy. The first fight my wife and I got into happened when we were dating; I made a crack about "riding the short bus."

However, shortly after my son was born, when his body began twitching and convulsing during the seizures that shredded his brain, I very quickly learned how wrong, how stupidly wrong, I was. Because of my personal actions before my son Theo was born, I can't sit on a high horse and act like I am better than others, but I can be completely aggravated that somebody is insulting a sweet, innocent child who never did a single thing to them.

A person who called someone a racist or homophobic term would be publicly disgraced if they were discovered. A student who painted his face black and shuffled his way across the stage during a student event would probably be expelled. But luminaries like Jon Stewart, Ben Stiller and even Barack Obama can take a swipe at the disabled in front of millions, without suffering any real consequence.


The n-word is a hate crime. "Retard" is a punch line.


Racist and homophobic language is bad, but at least a black man can stand up for himself and fight back against his accuser. A gay man can turn the word "fag" into a term of pride if he's courageous enough. The intellectually disabled can do neither of these things. They take the ridicule and abuse, and according to crime statistics, they are far more likely to be physically or sexually abused than other people are. Stories of caretakers at homes for the disabled organizing "cripple fights" and jokes about "slapping a retard" casually told to me by unknowing and uncaring people keep me awake at night, paralyzed in fear of the fate that may await my son when I can't protect him.

My son, Theo, is a sweet kid who is always full of smiles-for those who get to know him. He loves hugs and tickle fights. He can smile and splash in the pool for hours and will spontaneously hug his twin brother Oliver-whether he wants it or not. He is a kind, loving human being. Like all other kids, he can also be a pain; however, that's the point: he's human just like you and me. To see only his disability is to miss so much. To mock his disability is to be inhumanly cruel.


Bill Maher once said that he wasn't referring to the intellectually disabled when called an opponent retarded. South Park tried to do something similar with the term "faggot" a while ago-trying to give it a meaning that wasn't a slur on homosexuals. I doubt Maher was being honest, but even if he were, it's beside the point. Despite what Kyle and Cartman might think, we don't always get to determine the meanings of the language we use. Society understands that when we insult somebody by calling them a retard, we are linking them with the intellectually disabled. This makes these people laughable, pathetic and even sub-human. Nobody ever uses slang terms for the disabled as a compliment.

I know that many college students are oblivious to the hurtful language they use and will dismiss what I'm saying as "politically correct" whining. Most individuals have not been fortunate enough to know or love somebody with an intellectual disability, to understand their challenges and their joys. But before you call your friend a "retard" or describe your least favorite professor-or perhaps this article-as "retarded," remember that there are human beings out there who live in the shadow of that word. How we speak about our fellow human beings says more about us than it does about them.

Buddy Walk 2010 in Pictures

There are no words to describe how absolutely joyous it feels to know the depth of the loving people we were surrounded by on Saturday, October 9, 2010.

I don't think even a panoramic camera could've captured all of Cami's Crew!

If Cami wasn't, well, Cami, then I am afraid to think of all of the little things as parents we would be taking for granted. But, thanks to that magical extra 21st chromosome, we push forward, day by day, celebrating the minute, the small, the big, and the gigantic accomplishments of Cameran as if they are each a milestone that all children's parents celebrate.

Sitting up on soft AND HARD surfaces (as of the weekend). CHECK.

Reaching up when you say "Up", and not just for clothing. CHECK.

Craftily taking off both socks, jammie bottoms, and diaper tabs. CHECK.

Rocking the 4 point crawl stance like she is a sprinter ready to take off at a race. CHECK.

Maneuvering through the house in her walker that she walks bounds like Tigger in. CHECK.
There are so many more things that are exciting right now in little miss Cami's world. Right now she is fascinated with her two puppies (the fake ones that sing and say colors). They make her light up in a way that exudes radiance from her tiny little face.

But enough of that. Back to the Buddy Walk, which is what this post is supposed to be about....

Our little buddy, Caleb, did an awesome job leading the Crew around the trail, holding Cami's sign proudly!

Both sets of grandparents came!!!

Oh, and not to toot my own horn or anything, but we raised over $4,000 in support of our local Ds association, and in doing so, scored a "top fundraiser" prize of a season family pass to the Baltimore Aquarium, AND I am also the proud winner of a raffle prize....Not the hot air balloon ride, not the Signing Times DVD set, not the $50 gift card to Olive Garden.....wait for it.....I won a 3 month gym pass! I guess it really is time to slim down!