Katie’s FUNd Camping Adventure!

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Megan, Yidi and Jessica setting up a tent

The annual Katie’s FUNd camping trip was last weekend and it was a huge success yet again! Every year the anticipation of this event starts months ahead of time; participants begin making plans, discussing tentmates, and even packing their bags in preparation. This year we headed to Refugio State Beach for the weekend and although the weather was gloomy and cold almost the whole time, it couldn’t dampen our spirits! We arrived at camp at about 5:00 and everyone immediately got to work pitching tents and setting up our space for the weekend. With everyone helping, the work went quickly and our campsite looked great in no time. “Hobo packets” have become a tradition for one of our dinners on the camping trip and this year was no different. While we had been setting up camp, Maura Kennedy (mom to one of our Katie’s FUNd participants and volunteer extraordinaire) and Terry Kennedy were setting out all the supplies for dinner. “Hobo packets” essentially consist of vegetables, meat and cheese wrapped in foil and cooked on the fire. Each participant receives a piece of foil and then goes down the table adding whatever meat and vegetables they like. After about 15 minutes on the fire, they are cooked to perfection and make a delicious and healthy meal! But camping food can’t always be healthy right??? So dinner was followed by gourmet s’mores – choices included peanut butter cups, peppermint patties, filled Ghiredelli squares, and of course the traditional Hershey’s bars!  After a night around the campfire, everyone went to bed full and happy.

Saturday morning we awoke early to the sound of birds chirping and cawing around our campsite. Everyone groggily emerged from their tents and indulged in a quick breakfast of bagels and fruit. After breakfast we split into 3 teams for a scavenger hunt. Each team went off in search of items such as red licorice, a purple wildflower, a pink rock, a corn husk, a candle, and much more. The competition was fierce but the winning team was crowned at the end of an hour and had bragging rights for the rest of the weekend.

Robby’s birthday happened to fall on the Saturday of the camping trip this year so his parents were kind enough to bring up pizza and cake to celebrate with us at lunch. Robby had been talking about this for weeks leading up to the camping trip and was elated when he finally got his chocolate cake and we all sang happy birthday (he even tried to start an impromptu rendition of the birthday song around the campfire on Friday night because he didn’t want to wait until Sat!).  After lunch we split into 2 groups – some stayed at camp while other brave souls ventured down to the beach even though it was still really cold. Robby went boogie boarding in the freezing ocean and came out with a smile from ear to ear – definitely one of the highlights of the trip for him. A few others ventured into the water briefly, but most stayed on the beach. Jessica and Megan worked with Tim on a giant sand castle and Kyle dug a huge hole and then had us bury him up to his neck! Those back at camp worked on various crafts including decorating flower pots for Mother’s Day since the camping trip happened to fall on that weekend. Some people also took advantage of the down time for a quick cat nap. A small group of us went on a walk up to the bluffs and took in the beautiful view.

The biggest adventure of the afternoon was when one of the trees that the hammock was hanging from fell down while Tim was in the hammock!! Luckily no one was hurt and a ranger came and helped to move the tree out of the way. It definitely added a little excitement to the afternoon though!

The fallen tree...

As the evening started to draw near, Chris started the fire and cooked up the meat for our taco feast that night. Dinner was again followed by s’mores and an evening around the campfire. We exchanged stories, talked about our favorite parts of the day, and asked hypothetical questions – If you could only have one food for the rest of your life, what would it be?? The clouds finally burned off in the early evening so we had a sky full of stars to gaze at as we enjoyed the heat from the fire.

Sunday morning we made peanut butter cup and chocolate chip pancakes with the leftovers from the s’mores supplies and they were amazing! It was a great way to get everyone energized for all the work that needed to be done to pack up camp. Once again, many hands made for light work as everyone pitched in, washing dishes, taking down tents, and packing up supplies. We loaded up all the vehicles and headed back to Alpha; our weekend was sadly at an end once again, but the memories will last a lifetime and people are already starting to talk about next year’s trip!

Siblings Speak – Marisa Pasquini

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Marisa shares her thoughts about her brother Rick on our latest Siblings Speak blog:

My brother Rick is dying. He is 58 years old and was diagnosed with cancer in January. His body is fading quickly, but he just gets sweeter as the weeks go by. Rick participated in a day program for over 35 years and would rarely miss a day. He is the type of person who likes routine, and had a definite schedule that he stuck with every day. After work, he came home, put away his lunch box, and watched TV until it was time to make his lunch for the next day (he didn’t like to eat in the Cafeteria at work), and then go to bed. He was not very interested in talking, unless it was to discuss the score of the latest Lakers or Rockies game, or the Indy races. All of this changed in January. He had been having strange symptoms for several months; the most serious of which were lack of appetite and an alarming lack of energy, which caused him to need to lay down in the middle of the day and is completely uncharacteristic of him. He was scheduled for more tests, and in order for him to get quicker medical attention, his doctor recommended taking him to the ER. After being admitted, diagnosed, and released, he never went back to his old routine. He has been home, but he has seen more people and had more conversations than I can ever remember.

The conversations I’m having with him are unforgettable. When he first came home from the hospital, he was going to bed while I was visiting. I went and tucked him in. As I was walking out of the room, his eyes were open and he was looking at me. I aksed, “Do you want to go to sleep or do you want to talk?” (Rick always went straight to bed and straight to sleep, no funny business for him! ) He said, “Talk”… He asked me a few questions, about me, my daughters, my ex-husband (who has a goatee, he asked, “When is he going to shave it off? Tell him to shave it.” Rick doesn’t like beards) Then he started recounting all the times we had spent together. It went something like this… “Remember when I came to Vegas to visit you? And you made me a bed in the living room. It wasn’t in the big house; it was in the smaller house… And you took me fishing, at that lake, and I didn’t catch anything, but you brought me a lunch… And remember when I came to the Alpha picnic and I was in the watermelon eating contest? They took pictures. Where are those pictures? And I won, and I got a ribbon, but I lost it. I went to the Ventura County Fair, and I wanted to go in the watermelon eating contest, but I ate too much. Next time I won’t eat so much.” There was more. As he talked tears streamed down my face. I was afraid he would be sad but he never said anything about the tears, he just kept talking.

I love my brother.

Do you have a sibling with a disability? Would you like to share your thoughts with us? Do you know someone else that might be interested in sharing? Email Amy – abuesker@alphasb.org  All ages welcome! We want to hear from you!!!

Ask Jessica – Vacation Plans

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Alpha lover/Theater buff: Hey Jessica. My question to you is “If you could vacation anywhere in the world where would you want to go and why?”

Jessica: This summer I want to vacation with my boyfriend in the Bahamas and taste some of their great food and dining atmosphere and go to the beach and get a tan and lay out and sunbathe. I want to walk and explore all of the shops and stores and have that feeling of the ocean breeze and the warm sun against my body. I also would like to swim with the dolphins and have a blast. The second place that I want to go to is Woodleaf camp and be a counselor and work there for the summer and have lots of fun and help with everything. I miss going there and that camp has a lot to do and fun things like the pool, waterslide, and dancing and lots of other stuff. I want to help the participants in the club room. Those are the two vacations I would like.

Have a question for Jessica?? Leave a reply below and she’ll answer your questions next week. Look for a new post every Tuesday!

Siblings Speak – Ruth Baker, 8

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Our second Siblings Speak blog guest writer is 8 year old Ruth Baker!  Thank you Ruth for sharing your thoughts with us!

My brother, Nathan is 4 years old. He came to our family as a newborn and we adopted him when he was 9 months old. When he was a baby he had red hair and bright blue eyes. Now he has white hair and his eyes are getting darker.

The things that I enjoy about him are that he is funny, he is almost always happy, he is cute and is a “dancer”. I like playing with him.

He loves to run and likes it when I read to him. His “hello” is often like an animal — like a bark or donkey kick. He often calls himself an animal- it might be one of our pets, or a snail or a lizard. I think that is really cute and funny.

Sometimes it’s hard to have Nathan as a brother. Sometimes he hits, pulls hair or kicks me. I don’t like when he screams, his scream is really loud and I was not used to it at first.

Nathan is amazing. He can run, hang upside down, climb trees, play in the mud, dance, and is very very funny. He really enjoys animals, tools, and cars. He is a mechanical boy who enjoys machinery of all sorts.

Some things that Nathan needs are a special diet because certain foods hurts his stomach which makes him scream and affects his brain and makes it not work as well. He cannot have gluten (which is wheat and other things like that) soy, cow dairy and casein.

Nathan struggles with sitting still. He is trying to learn to listen to directions and he needs special help from his aide, at school and at church. The aide helps him. Sometimes his brain does not work right and sometimes he just hits someone and does not realize what he did and his aide helps him not do that and other things like that.

I love my brother. Even though it can be hard sometimes to have Nathan as my brother, I cannot imagine life without him.

Would you like to share your thoughts with us? Email Amy – abuesker@alphasb.org  All ages welcome! We want to hear from you!!!

Paul – The Happiest Place on Earth

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Well . . . still hunting for that house (or apartment). No luck! This could be depressing!! Good thing I have my New Year’s Resolution to work on! Nooooo

Not the weight loss – boring!!! It was the Ghost Host Narrative from Disney’s Haunted Mansion. I’m very pleased to report that I now know most of the Ghost Host speech. OK, OK – I admit it – I know all of it! Not only do I have the words down but I have the tone to perfection! There’s only one thing left to do – go on the ride and speak the words with the Ghost Host himself! So, I’ll be heading down to Disneyland in a couple of weeks. I’m looking forward to it. I’ll be sure to do my lines to perfection on the Haunted Mansion ride. Oh yeah, and then I’ve got to be sure to catch Star Tours while I’m there. Hopefully I’ll see the Dark Lord – Vader – Hey what if one of my group is selected as the rebel spy? What if it’s me!?!?!? That would be cool. I’m a great rebel! Well and since it’s just next door, I might as well go on Space Mountain. Oh, and Buzz Light Year, since I’ll be in Tomorrow Land is a must. I hear one of my party is an expert at Buzz shooting. Hah!! — they better watch out with me along! Then there’s the Storybook Land Ride, which I go on every time. I really love that ride – it used to scare me when I was a kid but not anymore. Guess I conquered that fear! Of course I’ll be going on Pirates searching for Depp (all three of him) during the ride. He looks so real. It’s like Jack’s there in the flesh!! Goosebumps for sure! Maybe I’ll dine at the Blue Bayou in the Pirates Ride or maybe in Gepetto’s Grotto. It’s a hard choice. But one thing is for sure, I’ll be looking for Belle! Some people search for Hidden Mickeys when they are in Disneyland. Not me – I search for Belle.

Wish me happy searching,

Paul

Mariana – EL CUMPLEAÑOS DE MI HEROE

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Abril 27 de 1998 una fecha especial para mi en muchos sentidos! Llegó al mundo Oscar, en circunstancias especiales cesarea de emergencia y sin respirar fue transladado inmediatamente a cuidados intensivos (NICU) en el Hospital Cottage; un niño enorme de casi 10 libras pero que tuvo que luchar contra la falta de óxigeno para salvar su vida, lleno de sondas y cables por todo el cuerpo y máquinas luchó y luchó como todo un héroe. Las primeras 72 horas de su vida fueron cruciales y no sabiamos si sus pulmones responderían lo que sabiamos es que ya había un daño cerebral por la falta de óxigeno. ¿Qué tan severo o cómo le afectería en su vida? tampoco teniamos idea.

Al pasar los meses fuimos descubriendo que el daño cerebral fue severo, Oscar no tiene control de su cuerpo no coordina sus movimientos no se puede comunicar verbalmente, depende totalmente de nosotros para sus necesidades más básicas, ha tenido cirugías en sus piernas y manos.

Pero Oscar ha traido a nuestras vidas mucho amor y enseñanzas; desde recien nacido toleró mucho dolor físico al estar más de 30 días en el hospital y con tantos procedimientos médicos y a veces nosotros por un dolor de cabeza ya sentimos que nos morimos; él no se dio por vencido y luchó por su vida y yo pienso que todo tiene una razón de ser aunque a veces no entendemos el porque de muchas cosas .

A través de estos años yo he aprendido a ser más tolerante, paciente, indulgente y a ver cosas hermosa en mi hijo, su sonrisa ilumina el ambiente, durante su ausencia la casa está triste, callada y sin esa magia de un ser lleno de luz, otra cosa que por él me ha sucedido es tener la fortuna de conocer tanta gente maravillosa tanto otras familias de niños con necesidades especiales como los profesionales que de una u otra forma han sido parte de nuestras vidas al trabajar con Oscar a estas alturas no terminaría de escribir nombres por eso mejor no empiezo.

GRACIAS OSCAR POR EXISTIR Y POR LLENAR NUESTRAS VIDAS DE AMOR

Another Look at the Rainbow – Straight From the Siblings

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Did you know that the Alpha libraries also have an extensive collection of children’s books? Some of them are disability related while others are general children’s literature.  This week’s book is being featured in celebration of the launch of our Siblings Speak blog!

Today’s featured book is a sweet book from the children’s collection called Another Look at the Rainbow – Straight From the Siblings written by and for children who have brothers and sisters with a life-threatening illness. The authors range in age from 6-20 and have siblings with various disabilities and illnesses. The stories range from a touching confession of a sibling who felt like her sister’s disability was somehow her fault and the guilt that came with that to embarrassment and even jealousy at the attention their sibling receives. The book also includes children’s illustrations with the stories. Some of the language is a little dated as the book was published in 1982 however the emotions expressed are still prevalent today in so many siblings who may not always express themselves and who often feel alone and left out.

You can check out this and many other books at both of the Alpha Resource Connections Libraries locations.  The South County library is housed in the Tri-Counties Regional Center building at 520 E. Montecito St. and the North County library is located at 1234 Fairway Dr, Suite A in Santa Maria.  If you’d like to check out any of the items featured or look through the many other items at either library, contact Jennifer Griffin at (805) 683-2145 or jgriffin@alphasb.org  for library hours. Can’t get to the libraries? We can bring books to your home or office! Contact Jennifer to arrange a convenient time for you.

The Importance of People First Thinking

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This is “Chris”. He has autism. This is how I was introduced to a 3 year old boy by a preschool teacher recently. I was shocked and heart-broken that apparently the second most important thing for me to know about this child, after his name, was a diagnosis. What activities does he enjoy doing? Does he have any siblings? What are his favorite foods? What makes him smile or laugh? What brings him joy or sorrow? Pain? Maybe I had a somewhat cynical mindset, but her statement conveyed to me that none of these things were as important as the information “He has autism”. I do not believe this young professional meant this offensively. She simply felt that it was the most important information she could offer to me about him, but it was like a slap-in-the-face reminder to me of how far our society still needs to progress towards acceptance. To think that the most important fact about me could be something as simple as a label. This is Sarah. She’s overweight. This is Sam. He smells bad. This is Mark. He hits people! I doubt that any of us would want to be known by these labels so why does it happen so frequently with children with special needs? I’d like to think that the people who are saying this are simply just uninformed and don’t realize the power of their words and how they can immediately change a person’s view and expectations of someone with this kind of introduction, but that does not make it acceptable.

I must pause and clarify that I am not against diagnoses and I do think that sharing this information can be quite helpful in some instances in developing behavior plans or learning appropriate ways of interaction with people. I simply wish it was not an integral part of an initial introduction, so closely tied to a child’s identity. In the initial meeting with this child, helpful information could have been shared without a need for including the diagnosis so immediately such as “This is ‘Chris’. He does not have a sense of personal endangerment so he needs to be watched closely because he tends to put himself in precarious situations and does not recognize the risk. He does not have a lot of language yet so he has trouble communicating his needs. It helps if you use simple sentences with him and give him an extended period of time to respond. He loves to ride bikes and play with trains. If you ask him to do something you need to follow through with your request even if it takes him longer to comply than other children. He is overall a very happy kid and loves to make new friends. He has an older brother who loves him dearly.” All of this information would have been very helpful and would have given me a much better insight into Chris than simply “He has autism.” What does that even mean? I cannot even count the number of people I have met who “have autism” and I’m the first one to admit that every single one of them is so different that this information doesn’t really tell me anything about the PERSON.

I have long been a proponent for people first language – the boy who has autism rather than the autistic boy; the girl who is blind rather than the blind girl – but I am coming to realize that the concept must go far beyond people first LANGUAGE to people first THINKING. “This is Chris. He has autism” is technically people first language – he HAS autism versus he IS autistic. However this is far from people first thinking. This statement is still focused on the diagnosis and not the person. As I was contemplating this concept it occurred to me that I almost think of a diagnosis like a hashtag at the end of a Tweet on Twitter. It is important information and can be helpful, but it is not the focal point. “Chris – kind, friendly, daredevil, loves trains, a man of few words. #autism”. This would give me a much better understanding of him as a whole person rather than a simple label. My hope for the future is that eventually this will not even be a topic of discussion and all people will be recognized for who they are and not what they “have” or what they can or cannot do.

I am Amy. I enjoy running, baking, scrapbooking and spending time with all the kids in my life. I have an incredible family and amazing friends. I am a good listener and like to solve problems. Travel is a passion of mine and I wish I could do it more often. I love the Pittsburgh Steelers and the Oakland A’s and enjoy going to just about any sporting event. Oh yeah and I happen to have a Type 1 Chiari Malformation of my brain. It’s nice to meet you….

Siblings Speak – Julia Weitzman, 7

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Introducing our newest blog category – Siblings Speak!  This will be a collection of thoughts from siblings of people with disabilities.  We are thrilled to introduce our first guest writer - Julia who is 7 years old.  Julia thank you for sharing your thoughts with us! You are a great big sister!

Hannah and Julia playing together

It is really fun having a little sister with Down syndrome. She is really fun to play with. She is loving, kind and very sweet. She has a very tender heart. She is also very cute and very funny. She has a lot of friends because she is sweet and kind. She loves me and our whole family. She also is very good at saying words like bus, mommy, daddy, mom, dad and lots of other words. She hugs a lot and almost knows how to say my name. She loves to help others and loves to play speech and be the speech teacher. She loves to watch movies like Arthur’s Lost Pal, Judy Moody and the Not Bummer Summer, Cars 2 and a lot more. She loves to dance and watch our dance video called Bella dancerella . Sometimes she is a little pesky. She gets mad sometimes and disobeys. That is how fun it is to have a sister with Down syndrome that can be a little pesky sometimes.

Would you like to share your thoughts with us? Email Amy – abuesker@alphasb.org  All ages welcome! We want to hear from you!!!

Participant of the Week – Steve Jimenez

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Steve Jimenez is the Alpha Participant of the Week!  Steve is a proud member of the Mustangs social center and says he enjoys spending time with his friends at Alpha and going to the beach and park.  He is a member of 2 work crews; on Mondays and Tuesdays he works with different groups from Alpha to help clean up local parks. He also enjoys going swimming on Thursdays and joining a group that walks at the SBCC track. In addition to all of this, he loves to spend time with his girlfriend hanging out around Alpha.

Just after this interview, he was going to go shopping with members of his social center and wanted to buy some music tapes.   Steve also really enjoys Skyping with his brother John, who lives in Switzerland, and says that he wants him to bring some Swiss chocolate next time he comes to visit! However, he said he doesn’t want to go to Switzerland to visit because it’s TOO FAR!

When he’s not at Alpha Steve says he likes to spend time at home and outside enjoying the beautiful Santa Barbara weather.  He also enjoys going bowling and playing his guitar.  Dogs are another love of Steve’s and he broke into a big smile and exclaimed “I love dogs!” when the topic was mentioned.

Steve, thanks for being such a wonderful part of the Alpha family! We love seeing your smiling face around campus!