Guest Post from Susan Holcombe (A.K.A. Rion’s Mom)
I will start by saying that I can instantly make a connection with another family who has a loved one with Down syndrome. I have no problem approaching another family, no matter where we are. If a connection is made great, if not, no problem, but I am drawn in to at least say hello. My husband, Tom, likes to call this a “subculture” that we belong to. We have made some very, very good friends by just approaching someone to say hi. great connections have been made this way. I don’t know why Tom and I react this way, but we do, feeling an instant connection. We can’t possibly be the only ones? :) I will also go out of my way to have a conversation with an adult who has Down syndrome should I see them out in their community working or playing. I feel blessed to have just a few minutes of their time to chat with them!
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At first, I couldn’t believe it had happened. Of course I thought it was a mistake. I spent most of the past twelve months bouncing back and forth between depression and anger. It seemed like the anger was the only thing that pulled me out of the depression. I’ve also done a lot of bargaining. “If I work hard enough to get “justice”….
“It’s my money for working hard, gonna save it forever!”
“Well, I get a paycheck too, but I don’t get to keep all my money forever. I have to spend it on things like food and heat and water and the cable.”
“Well, I’m going to save until I have THOUSANDS.”
”Once you have thousands, will you buy something?”
“Yeah, and I’m moving out!”
“Really? Where are you going to go?”
“Not too far from you guys, down the street.”
“Are you going to use your money to buy a house?”
“No, you guys can buy it, I’ll live in it.”
Then he proceeds to explain to me that we’re going to take our money and go somewhere and that guy will say 248 and then I’ll say 249 and then he’ll say 250 and then I’ll say 251 and he’ll say he quits.
I started laughing so hard when I realized he was describing a house auction. Yes, he watches a TON of HGTV!!
So there you go….Josh has a goal….he is going to save ALL HIS DOLLARS until he has THOUSANDS! Thousands in $1.00 bills is going to eventually get hard to store in the bank’s little white envelops, but I am sure he will come up with a plan for that too!
I want to start by saying I respectfully understand your reasoning on why you do not want us to adopt Frisbee and trust your professional opinion, but I am VERY determined to change your mind. As you may know my brother has special needs and because of that my family is very drawn towards other people and animals who have special needs. I look at my brother as a teacher. He has taught me SO many good things I can’t even count on both hands and feet the ways he has improved my life.
With that being said I feel it would be no different with Frisbee…. Yes it will be A LOT of work, A. because she will be the third and you and I both know 3 makes a pack, B. because she has special needs and lastly, C. because she is a shelter dog which means she could very possibly have a traumatized past that she could potentially have a hard time getting over. Now, on the contrary, I see some positive things in her that makes her have the potential to be a great dog! With the proper care and training I feel like together me and Frisbee can demolish some big boundaries set for special needs dogs and dogs of her “bully” breed in general! Starting with the biggest factor, in my eyes anyway, she is still young which is a good starting point for training a stubborn but very smart staffy. Secondly, I was reading an article on deaf dogs the other day and it stated that a deaf dog has a hard time establishing that “pack” bond because they have trouble communicating with the other members of the pack. It said in MOST cases a deaf dog will establish a better bond with there human than with the other dogs in the family, mainly because of the hand gestures and treats they will receive for understanding the hand gestures. So I am very optimistic of that being the case in this situation. Third, I am fully prepared for the enormous amount of patience and responsibility that is required to raise and train a special needs dog.
With all that being said, I’ll finish up by saying I can personally promise you that you guys will not find a better home for her than with me and Stephanie. Between the determination to prove people wrong about her “bully” breed and to break down those boundaries set for special needs dogs, and our love, respect, and appreciation for animals, I will guarantee this would benefit her as well as Stephanie and I! I don’t by any means want to rush into anything, BUT I do really want you consider us. It doesn’t matter to me how long the process will take, the answer no just doesn’t sit well with me as I fight for everything I believe in and NEVER give up on anything/anyone. I would hate to see her go to a family based on the reason that she is cute and eventually get sent back because she is too much work…. I very much believe in the saying, “if there’s a will, there’s a way” and I definitely have the will and determination. If you can take this into consideration and trust me as I have trusted you, I can guarantee a loving, caring, FOREVER home to Frisbee.
Thanks a lot Mike, for all your time!
“as you go through life, no matter what you do, or how you do it, you leave a little footprint, and that’s your legacy.”
“The greatness of a man is not in how much wealth he acquires, but in his integrity and his ability to affect those around him positively.”
Ethan’s legacy is one of positive change. He changed the people who knew him – and so many that he never met. Thanks to the brave efforts of his family, Ethan’s footprints have created a path for advocacy and social change. But, it’s hard for me to think of the shy little blonde -haired kid I used to know in those terms.
So today I toast what Ethan’s memory means to me:
*Here’s to Ethan and the little footprints he left us to follow.
May we always remember to show those we love how we feel,
Stand up for what is right,
And be grateful for the people who love and understand us no matter what.
Thank you Ethan. *
I can’t imagine how painful it will be to go through Ethan’s birthday (January 9th) and the anniversary of his death (January 12th).
Won’t you join us? ?
There are LOTS of us out there who do!
Our needs are different.
I have some ideas about what I’d like to see in an online community – but I’m looking for input. Please feel free to share ideas about what features you think we should have and what topics you’d like to learn more about / discuss.
Here’s a list of the goals I’ve identified so far:
Plans / Objectives:
The Philosophy of the community is also a work in progress, but here’s what I have so far – feel free to make suggestions here too!
Together we can create a living history that tells the story of a generation of people who have Down syndrome – who were among the first to be “mainstreamed / fully included” in public schools and now have adult lives, concerns, and dreams. While we do this, we can support each other by learning, sharing, and responding to each other in a way that was not possible when our children were young.
Josh was born in May of 1995, feels like five minutes ago in some respects and a lifetime ago in others. How does this happen? Where did the time
go? How did we get here? A blink of an eye! Every good story has to provide a little background information! This is where our story, what we like to call the rollercoaster of Down syndrome, begins~~~
I was 28 years old, married for eight years with a five-year-old, typical son,
Tim, when Josh was born. During the course of my pregnancy, we consented for some prenatal testing. Through a blood draw, the lab performed an Alpha-Fetoprotein test (AFP), which I had declined while carrying my first son because of its inaccuracy rate but, for some reason, while carrying Josh, we decided to have the test. It came back negative for any abnormalities. YAY! I called everyone I could think of to tell them that the baby we would have on or around June 15, 1995, was going to be healthy!
However, on the Friday of Memorial Weekend in May 1995, very much to our surprise, Joshua Michael arrived THREE FULL WEEKS EARLY, weighing in at 8 pounds, 1 ounce, with a cleft lip, Donald Trump sweep-over hairdo and Down syndrome!! I knew he had Down syndrome the minute they placed him on my chest.
You see, 10 years prior to Josh’s birth, my cousin, Janet moved to Massachusetts in order to get her son Early Intervention services. His name was Paul, he was the love of my life (besides Tom who I was dating at the time) and he had Down syndrome. Tom and I took that baby everywhere we went, zoos, baseball games, friends’ houses, even attended his early intervention classes. He loved music and we learned how to sing all his favorite songs in sign language with the hopes that he would start to use signs to communicate his needs and wants to his family.
One very sunny summer day, at my grandmother’s birthday party, when I was 18 or so years old, I had laid out a blanket in the yard, placed Pauly and all his toys on it. We sat together singing and listening to his music. I loved talking to him. I was overcome with love for this little boy and leaned in close to him and whispered, “someday Pauly, I want a baby just like you.” My mom overhead the comment and turned to me quickly saying, “Karen, don’t say things like that!” We jump ahead 10 years and Josh arrives, a baby just like Pauly! Hmmmm, who exactly was listening to my wishes that day, besides Pauly and my mom?
So anyway, seems I may have digressed there I tad bit. Josh arrives, we’re crying, the NICU doctor comes in, stands at the side of my bed and says “we think that your son may have Trisomy 21….Down syndrome, but we’re not positive.” I looked at him and say, “you know you’re not wrong, I know you’re not wrong.” He reassures me that they weren’t sure and would do a test using blood from the umbilical cord and have the results in a few weeks. Tom and I mourned for 24 hours, each in our own way.
Tom had actually arranged for a crew of friends to come to our house over the long Memorial Day weekend to help him replace our roof. He called to tell everyone that the roof project was cancelled, once we knew the baby was, in fact, coming. Once Josh was born and we found out he had Ds, I knew exactly what was best for Tom ~~~ go home and put a new roof on our home and that is exactly what he did the next morning!
I wanted one thing, for my entire family to be together. I NEEDED TIM! I kept crying and telling Tom to have my parents get Tim to the hospital. I had spent the last five years of my life with Tim as my only child and he was my best friend. We did everything together, including (all of a sudden at the beginning of my pregnancy) going back to church, attending mass every week, just he and I, sitting in the same pew, saying the same exact prayer: “Please God, let our new baby have 10 fingers, 10 toes, and a healthy brain.” Week after week after week, that is what Tim and I did every single Sunday. Why, all of a sudden during my pregnancy, did I find the need to be back in my church?
My mom and dad arrived at the hospital with Tim in tow. I placed Joshua up on my shoulder facing away from Tim as he scurried to the side of my bed. I wasn’t hiding his Down syndrome, but I was hiding his cleft lip. I said, “Tim, you know how we’ve been going to church and saying our prayers every week?” He eagerly, replied “YUP!” I continued, “well, our new baby has 10 fingers and 10 toes, but we don’t know how healthy his brain is going to be, because he has Down syndrome.” Tim’s response was immediate and emphatic, “I don’t care, he is my baby brother, CAN I HOLD HIM NOW?” At that moment, I knew this was the first step in our healing and letting go of what we thought our life was going to be, allowing a change in our perception of how things were going to be and knowing that things were going to be okay!
A few hours went by and a nurse appeared in our room, telling us it was time to “try to feed him.” She continued, “babies with Down syndrome usually have a hard time sucking, so I’m going to go get you a special nipple to try.” Ummmm, what? What, hang on…..I thought to myself “we’re already treating him differently? We’re already making an assumption that he can’t do something?” Then I finally got the words out of my mouth – “Let’s try a ‘regular’ nipple first and if he can’t do it, then we can switch to the ‘special’ nipple!” She thought that was a fine idea and my instinct to advocate for him was born, the second sign that EVERYTHING WAS GOING TO BE JUST FINE!
I won’t lie, there have been many ups and many downs ~ just like a rollercoaster ride. BUT for anyone who has taken a ride on a rollercoaster, at the end of it, the adrenaline is pumping, you’re smiling, laughing, you can’t stop talking about it, maybe a bit sick to your stomach but, for the most part, IT WAS A VERY EXCITING RIDE!!