*Foreword: I am only going to display photo’s of my family and some friend’s from the convention. I did not take any photo’s from the convention other than that! I am sure you can figure out why. People, unknown to us, will take such photo’s and use them without regard to the individuals feelings or permission, so to minimize the opportunity, there it is.*
Attending our 1st LPA National Conference was nothing less than amazing!
Prior to our arrival, in the days leading up to the event, I, myself was, in some regards nervous. I typically do not suffer from stage fright or anything of the sort, but nervous at the prospect of being in the minority, once again. This time, it wasn’t gender or race, it was height.
Knowing for the next several days, we would be spending our time with 2,000 conference attendees, more than 70 percent would be Little People (LP). Would we, as Average Height (AH) parent’s be accepted into a world we happened upon by God’s grace? Would we be looked at as no truly “belonging” because we are only AH parent’s to an LP?
Perceptions. Different views of the world because of upbringing or world exposure.
Knoah looking out the hotel room window!
No, we soon found we fit right in.
No sooner did we arrive at the hotel, were we meet by visions of AH parent’s with LP children. LP adults with their AH Children. Evidence that we no longer in our own reality of being a different kind of family, but of being a regular family. Catie’s family and ours shared a room to help keep cost’s down.
Catie, Hannah A., Tonya, Hannah B. with Knoah in the background!
Once we unloaded our suitcases and got settled into the room, we were anxious to get over to the conference site. The excitement, tension, unknowing awaited us past the glass doors, up the elevator to the 5th Floor.
Rounding the corner, we saw an amazing sight. I saw more LP’s in one room than I have since Knoah’s was born! People of all ages, of all sizes, walking around, riding scooters, mingling with old friend’s and new aquiantences.
I wondered where we went to let the conference organizers we were there. We finally found the room, signed in and received our badges and ID’s. We quickly opened our Program guide to see what activities we interested in, when event’s would be held, etc.
We spent no time quickly marking our conference guide to the interested workshops and sessions we wanted to attend. The kids, on the other hand, we cool, but they wanted to go swimming.
Throughout the week, we attended workshops such as Dwarfs in Ancient Egypt, Adoption, Achondroplasia and Hypocondroplasia medical specific workshops and Advocacy. We recieved a lot of useful information. Personally, it would have been more beneficially for me, if Knoah would not have been in a screaming mood. If anyone who attended a workshop with us can attest, Knoah is now deemed a “very happy and spirited baby”!
I attended a workshop with the famous Dr. Ain. We discussed after the workshop if bracing therapy for Kyphosis was important in Achondroplastic infant and does it work. He is of the opinion it does not. He referred to the “Rob Peter to Pay Paul” disadvantage. Where achon children are typically delayed with their gross motor skills, they end up being delayed that much more because of a body cast. He said that a true Kyphosis Back brace would come up to the neck and fall far below the hips. He looked at Knoah’s brace and said, it was okay, but in the end, it’s not really going to do anything for him. Dr. Ain said that there are various opinions about bracing and not everyone will be in agreement, so it is up to the parent’s to decide what is best for their child. He mentioned that if we were interested in having him see Knoah, to make an appointment.
I, unfortunately, did not schedule a clinic visit with the attending doctor’s because Knoah is already being followed by very good doctor’s. Though, I am a parent, and I want the best for my children, we may in the future follow up with Dr. Ain, to get a second opinion.
The entire vibe of the conference was that of comfort, of fun, of letting go. In this environment, we were understood.
I made a comment to one of the attendees that “here, I can put Knoah on the floor and let him go. I don’t have to worry about being reported to CPS for making my son drag himself on the floor.”
At home, unless we are with close friend’s, I do not have that “It’s okay” feeling. My friend’s understand, my friend’s know, but stranger’s do not.
We saw lots of babies and toddler’s getting around with their mode of crawling. Some of the toddler’s (Ahum, Owen) were already walking around! It was comforting to see other children, like Knoah doing well.
Owen and Knoah, Best Buds forever!
I found myself daydreaming, where Knoah would be in the next few months. Where he would be in the next few years. I saw LP adults in different stages of their professional lives and reflected that my son would be among these proud, hard-working adults. That Knoah would be secure with who he is, not only as our son, but as a member of the LP community.
At this point in writing, I want to share with you all the people we saw and met, but that would be impossible. As you know, we had the opportunity to meet the Roloffs. Catie and I also had the chance to speak with Amy one on one.
People think that when you meet a TV star, that they are going to be stuck up or too busy to actually meet you. Amy, was nothing less than gracious! In our conversation, I related to her how appreciative I am that they have chosen to do Little People, Big World (LPBW). It was at the time I was pregnant with Knoah that my grandmother (Meme) was a faithful watcher. She has since passed, but when we told the family about Knoah and he had a form of dwarfism, more specifically Achondroplasia, like Amy, my grandmother was so excited and so proud! That, I wanted to say something, no for myself, but because had my grandmother still have been alive, she would have wanted me to say something and that was motivation enough for me.
Meme said to me, but I didn’t say to Amy…you’ll see why…
Meme: “Oh, Tonya! I am so excited and proud! We are going to have our very own little person in our family!”
Which at the time, I thought, “okay…”, but now, things that get said, later mean even more to you.
Meme spent more time watching LPBW than I had. To this day, I have only seen maybe a handful of shows. It is difficult to watch when you don’t have cable. I knew Meme had learned more about dwarfism and more specifically the Roloffs. She knew what kind of people they were from the show and from that I felt comfortable approaching Amy.
When I finished telling her about Meme, she asked me about Knoah. She asked his age and what type of dwarfism he has. She asked if we had any medical complications, to which I responded “Yeah, the 1st year was kind of rough.” She advised me that he 1st four years are the most difficult, but once we are past that, things settle down and then it is just watching whatever issues may pop up.
I asked her for a picture, which she obliged and then I promised to not bother her the rest of the conference. At that point, we were already 3 days into our stay, so it was a promise I could keep.
Tonya with Amy Roloff
We saw Marty Klebba, Ian Michael Smith, Kristen Riley and Kenadie. We also saw several more people we were familiar with, but we did not approach anyone. We felt, like ourselves, they were here to enjoy the conference, so we wanted to respect their privacy.
I did, however get to spend a significant amount of time with a women, who over the last year and half has become a personal hero.
Ruth Ricker, a former LPA President, has spent years advocating for LPA and dwarfs in general. A women who stands maybe 4 feet, 2 inches, lacks nothing! Especially in the opinion department! Ruth wrote an LPA opinion paper in 1995 LPA’s official stance with the discovery of the Achondroplasia gene was this:
We instituted an information dissemination and discussion program on genetic screening issues for the membership in January 1995. We are providing information about the Human Genome project, the status of the genetic mutations and tests known for dwarf diagnoses, and articles exploring the various perspectives on the ethical and social implications, potential risks and benefits to individuals and to our community. We are broaching with the membership the possibility that within one or two generations, we could see dramatically fewer dwarf children being born to average size parents and pressure on parents of all sizes to screen for and prevent the birth of “healthy” dwarf babies, as is being done for spina bifida and Down Syndrome.
An rightfully so, she is right.
The time I spent with Ruth was not that of discussing this paper or even her opinion about the differences between an AH person or an LP person. It was spent talking and laughing. Friend’s who met through email, finally meeting in person.
I found Ruth to be an average American women with an incredible sense of humor.
Together, we were able to tour The RenCen which lead us to the 72nd ? floor. Now, I am not one who is afraid of heights, but I will confess, anything higher than my own head makes me worry.
The view was amazing! We walked around the Coach Insignia to view at least 30 miles outside of Detroit.
View from The Coach Insignia
The LPA National Conference was my opportunity to get a glimpse into the future. A chance to see what Knoah will be exposed to through LPA. What LPA has to offer to it’s member’s and I can say with confidence, my family, will be just fine! Knoah, will be just fine!
Part of my perception of an LPA National Conference was in part, shaped by Dan Kennedy’s book
Little People
A Father Reflects on His Daughter’s Dwarfism and What It Means to Be Different
To which Ruth laughs and says “your not suppose to read that chapter“.
In which, he describes a typical night at an LPA convention as (my words) a wild and crazy time with LP teenages and young adults partying the night away. My vision was I would be confronted with young adults, seeking partners for a good time and/or sexual escapades.
In some ways, I understand now what he was trying to relate. Imagine, being the only LP in your town, then at a conference you are confronted with 1,000 plus LP’s, who are looking for someone just like themselves. Someone, who may even be interested in a one-night stand or someone looking for a mate. What typical teenagers and young adults do in a year, is compacted into 7 nights for a dwarf teen or adult.
What I ended up seeing were teens and young adults, having fun. Nothing more, nothing less.
On the 22nd, we watched the Fireworks! Knoah was quite impressed with the display of lights and sounds!
Knoah stunned at the fireworks!
Detroit Fireworks
Knoah, I am NOT your father! LOL
We meet up with some other blogging families: Cat, Sonya, Mike, Sarah, to mention a few!
Of coarse, in the days that follow our conference experience, things will pop into my mind about things that were said or events, I’ll post more but right now, I’ll end with is:
WE CAN’T WAIT TILL NYC 2009!
Gotta start saving up that money!
