Monday, July 21, 2008

When Nicki Smiles

Here's the bit about Nicki I wrote for the ROCKO fundraiser. I'm debating the ethics of including pictures. She's such a beautiful kid, but not sure I should post pix for a kid that's not mine. Note: Mom gave me permission to post photos. Anyway, here's the piece....

When Nicki Smiles

When Nicki smiles the whole world seems brighter
Her laughter lights up the day with sparkles of joy
Her delight in simple things like swinging or spinning fast make all the world’s worries simply disappear
Her bright blue eyes shining with joy don’t see color or gender or wealth or status, only friends
Her hugs convey such innocent trust that the whole world loves her
Her whole world does love her

When Nicki smiles time seems to pause for just a moment and take a deep breath of admiration that this little spirit has chosen to grace us with her presence
At her slightest giggle, smiles cross faces
A full out laugh can make even the worst day seem not so bad
The most entertaining thing in the universe becomes knocking a can of marbles off a table to make a thundering crash
The sight of that golden head tossed back in a moment of glee is worth all the treasure in the world
She is the treasure

When Nicki smiles you forget about the hands and legs that don’t work quite right
When she laughs, you don’t notice that she never says a word
Looking into that bright face, it is impossible to think of all the things that Nicki will never do
You are lost in that moment of joy, of delight, of glee, of love
And it is enough
When Nicki smiles the world is a better place and we go away determined to make it a better place for her
So everyone can experience Nicki’s smiles

Sunday, July 13, 2008

Out of the Darkness

This is the promised piece about Ben, originally written for a ROCKO fundraiser.

We lost Ben for two years. I don’t mean lost so that we couldn’t find him. He was sitting right there in front of us. But the Ben we all knew and loved just seemed to disappear, to go somewhere deep inside himself where we couldn’t reach him. This bright little boy who loved to explore, play with toys, climb on anything and everything, call for attention, and do things for himself suddenly went away. No one is exactly sure what happened to cause this but we all immediately went to battle to bring him out of the dark place he had gone to. This wasn’t the first such battle fought for Ben. This miracle child was born extremely prematurely to a mother who couldn’t care for him. He weighed less than a pound, had multiple physical birth defects, and on top of all that, Down Syndrome. The doctors took one look at him and gave him up for lost. They put him on comfort care and waited for him to die. Two weeks later a nurse finally said, “I don’t think he read the chart.” Enter the woman who would become Ben’s Mom. The battle began. Surgeries, procedures, pneumonia, illnesses that should have killed him, nearly two years in the hospital; Ben conquered it all. He was eventually adopted by his remarkable family and joined his older sister, Leigh, who also has Down Syndrome, and his two older brothers. He learned to eat and to walk. He explored his world despite severe vision and hearing losses. He laughed and played and learned and thrived. When Ben came to us at our school, he was just beginning to use sign language to communicate and responding well to picture symbols. He would literally tear the room apart to explore and find out what was there. He was always escaping through the door to seek out a sunny window. He was gaining new skills at a phenomenal rate. Then one day he just stopped. He grew quiet and withdrawn. He started hurting himself. He would cry when asked to do anything. He was lost and didn’t know how to find his way back. We worked hard to give Ben what he needed: sensory experiences he found calming or engaging, love and attention, the expectation that he would get better and he would learn. We even tried medication. We fought the darkness for nearly two years. Then suddenly Ben started to wake up. He engaged in work and play tasks more willingly. He wanted to be included with groups and to spend time with his family rather than retreating to be by himself. He started communicating again and doing things for himself. He smiled more than he cried. In fact, the tears nearly dried up. He came out of the darkness a more mature Ben than the one we had known, with a teenager’s willfulness and stubbornness. He is more independent and interested in different things than when he was smaller. He doesn’t explore like he used to, but he is more willing to go new places and try new things. He now sits and laughs at things he finds funny for obscure reasons only he knows. He is extremely determined to get what he wants. He is affectionate in ways he never was before. He is stubborn and difficult and funny and brilliant and wonderful. He is our Ben, again, come out of the darkness and shining brighter than ever.

Sunday, July 6, 2008

Cast of Characters

So after spending a couple of days trying to decide if and what to blog next and THEN spending the whole weekend working on things in preparation for returning to school tomorrow, I decided to provide a Cast List of the characters in my room. All names except my own have been changed to protect the privacy of others, but personalities remain true to form.

First the kids, starting with the oldest and going to the youngest:
Ben: What an AWESOME kid and truly one of my favorite people. I'll be posting a short essay I wrote about him for ROCKO a bit later, so look for "Out of the Darkness." This kiddo is a true miracle boy in so many ways. He is not only the oldest in my class at almost 15 but also the highest functioning. He is working so hard to function around his disabilities which include Down syndrome, low vision and almost nonexistent hearing, organ issues, and bouts of depression (or something very like it). He is a blast to be around and my husband and I frequently do overnight respite care for him in our home. His mom, an awesome lady herself, is the Director of Operations for ROCKO so is my "boss" in more than one way and also a great friend.

Mike: This not-so-little guy only came to us 2 years ago. He is probably my most interesting and challenging student. At 14 he's been going through a growth spurt with resultant health issues that are bothering him a bit right now including scoliosis, increased seizures, GI reflux, and increased muscle tone. He's a trooper though and since his wheelchair was adjusted recently has begun tolerating it much better. Hopefully he'll start using his head switches again and we can get back to the important business of learning two switch step scanning, which he is quite good at when motivated. We are hoping to obtain a lap top for him using his deaf-blind grant that will increase his communication flexibility. Meanwhile I'm sure he'll continue to enjoy using his personal ipod as well as playing on the resonance board and positioning bench (more active learning equipment).

Chloe: Another of my favorite young people, Chloe is a teen in every sense of the word. She will be 14 this summer and is every inch a Queen. Her sense of humor is phenomenal and don't you dare take away her ipod (which is really hers: pink, even though she can't see colors, and engraved with HER name and holding HER music and HER audio books). Between a calorie increase and recovering from a major illness, her attention, stamina, and interest in the usual activities has improved greatly. She's even back to "walking" again using the HOPSA harness (for those familiar with Nielsen's active learning techniques) on the swing set in our classroom, which is TOTALLY COOL! She is so proud of herself. Next it's back to two switch step scanning and increasing her communication opportunities beyond asking for wants and needs.

Wayne: This vivacious 12 year old is something else. We call him Casanova because he is such a flirt. Definitely not an academic, though, as he couldn't care less about his "school work" even though he is perfectly capable of doing it. He'd far rather watch Sponge Bob or something else on TV or play video games or music videos from Priory Woods School (check it out if you haven't already) on the computer. His parents just bought him his very own tablet PC that we're (hopefully) going to use for some communication as well as edutainment (shhh...don't tell him it's for work or he'll never touch it!). He's a pro at the touch screen so now we just have to find the right wheelchair mount for him. Off to the world of Conversation for us!

And finally, Nicki: She's 6 months younger than Wayne and what a little doll. She is a beautiful kid and able to do so much, if she'd just share. She loves to play "jokes" on us and interacts like the little social butterfly she is. Her increased seizure meds have been causing a bit of a snag in progress but once that levels out I think she'll be her old self again. I'll be posting a little piece about her sometime in the near future too.

Now for the adults:
Miss C has been with me the longest and I honestly don't know what I'd do without her. She is the organizer of our little family and has definitely guaranteed herself a job as I can't find anything without her! She and Ben have a pretty close relationship and even though I don't really assign 1:1 staffing, she and he most often work together.

Miss M came to us through Miss C. Such a sweet woman and very sensitive to the needs of everyone in the room. She and Nicki have a very close relationship and Miss M can often get more out of her than anyone else.

Miss V has been with us since October. She is very good with my lowest functioning kids and a technology wiz.

Miss J has just joined us this summer. We're hoping she chooses to stick around as Wayne has become quite attached to her and with the new computer, I really need more 1:1 support for him. Besides, we like her.

We also have a number of guests with us this summer as I provide services to the three elementary-aged students in the SPMD program. B is the oldest and comes to us in one more year so it's been great to get to work with her and get to know her better. Her para Miss S came along for the ride. A comes with her hilarious nurse, Nurse F, who keeps us all in stitches. And little T may well be one of the reasons Nicki is acting out lately (do I spy the Little Green Monster peeking around the corner?). This little sweetie is extremely bright and gets to come under my wing for the rest of July since the para we had borrowed had to go back to her regular assignment this month.

That's the gang, with the exception of the PT, our wonderful SLP Mr. J, and the other periodic therapists and adults who are in and out of our little haven.

Thursday, July 3, 2008

First blog

So here I go, off into my first adventure as a blogger. I've been hanging out on a number of blogs for the past year or so, most of them informational, some of them glimpses into personal experirences willingly shared. So now it's my turn to add to the online universe. I don't know where this will go. Will it be resources and information? Will it be a forum for creative writing and self expression? Will it be an ongoing to-do list and celebration of our successes? Will it become something entirely different? I have to admit that the quality of the blogs I read on a regular basis is really high and I don't know if I can come close to matching it. But here goes...

Let's start with a little background. I have been teaching kids with severe and multiple disabilities for 14 (!!) years, most of that time in my current placement in a middle school in South Central Kansas near Wichita. My program serves kids from age 10-16 (sometimes older and sometimes younger) with low incidence disabilities in the severe-profound range. We focus on fundamental skills such as communication and motor skills as well as cognitive development, personal care, and vocational and community opportunities. I currently have 5 students on my ful-time caseload with a variety of disabilities including cerebral palsy, Down syndrome, brain anomalies, seizures, and other health impairments. All are nonverbal and 4 are nonambulatory. Two qualify as deaf-blind and two others have significant vision impairments. They are a diverse group of kids who are a blast to work with. The constant challenge of meeting all their needs and creating opportunities for success is something I wouldn't change for anything. I can't imagine being in a different teaching position. I love the creativity and freedom my job gives me. Besides, it's just down right fun. It's awesome to have a job where I actually get paid to play!

I also work with an organization in the Wichita area that provides respite care services to families with children with disabilities. ROCKO (Respite Outreach Care for Kansans Organization) is desperately needed in our area. We currently serve approximately 100 families and are growing daily. I have been fortunate to be involved with the organization almost from the beginning and am among the core staff of dedicated professionals committed to its success. ROCKO gives me the opportunity to work with some awesome people and to stretch outside my comfort zone to work with kids with different skill sets and needs than those in my classroom. I have learned so much from working with ROCKO and know that those experiences have improved my abilities in my classroom.