You are currently browsing lisabock’s articles.

This week was the last day of baseball for Beautiful People. They have an adaptive sports program for people with special needs. Every week the athletes try their hardest to play the best game they can. They have fun, joke around, and really excel at making Sunday the best day of the week.  I know we had a great time this year. We made some new friends. Sara got great exercise and fresh air. I am looking forward to more events we can participate in with Beautiful people over the summer, but for now we say goodbye to the 2014 season. I asked Sara to help me write this story. I asked her what did she likes about Beautiful People?  She quickly came up with a dozen things she likes about this season:

  1. Seeing her friends every week.
  2. She love the coaches, and all the volunteers
  3. Learning new baseball skills.
  4. Always has a good time.
  5. Likes getting a trophy at the end.
  6. Likes seeing  her friend Rebecca .
  7. She likes to invite friends to watch.
  8. Sara loves the Beautiful People buddies.
  9. We have a lovely field.
  10. There is more than one field.
  11. Baseball is one of her favorite hobbies.
  12. There is lots of stuff she likes about it.

BP last day 2014 017 BP last day 2014 020 BP last day 2014 025 BP last day 2014 026 BP last day 2014 032 BP last day 2014 035 BP last day 2014 037 BP last day 2014 038 BP last day 2014 039 BP last day 2014 043 BP last day 2014 003BP last day 2014 042 One bonus of being in the Beautiful People sports program is our really creative director Jan Brunkhorst always has something great planned in addition to the team sports. This summer we will go as a group to the Renegades Semi-pro baseball game. We are planning on having another July track and field day. We have a raffle that is started to help with our expansion plans of getting a ball field with a soft surface to help meet the needs of players who are physically challenged. Check out their programs. You may know someone who would really love an adaptive sport or know someone who would love to volunteer. By volunteering you get to improve the lives of a person with special needs and surprisingly you might improve your own life.  Lisa Bock For more information about the programs check out: http://www.beautiful-people.us

Advertisements

Sunday we will celebrate Father’s day. My husband Mike and Sara have been planning their day for a while. Both of them decided they do not want to go to a fancy restaurant, no breakfast in bed,or other boring, typical, Mother’s Day activities. They have a great relationship that is very very different than the one I have with Sara. They want to go on their own adventure which usually means they want to fish at the brook by our house. Sara has been fishing with my husband since she was in a stroller.  Dad takes her to pick up her fishing license every year. This particular year they came home with more than the fishing license. Sara bought a pair of wading boots and a fishing vest. When I asked her why she bought this extra fishing gear, Sara stated, “I want to look like Dad”.  Oh my gosh…… this would not be a good thing. My husband only wears jeans, t shirts, and is dress code stuck in l977….. I am letting it slide though because it is a great form of flattery when Sara wants to emulate her Dad. She loves to “work” with him on the cars, make home repairs, anything that he is doing is fine with her. Mike is great at fishing, he is great at fixing cars, he is great at telling a joke and Sara looks up to him. So yes, dress like your father, wear your waders and have a cool fishing vest.

001 0327111115

 

 

 

If Sunday is like their other fish adventures it will start at the top of our steep hill. They will spy the ground to see animal prints and determine which animals have been in the area. If they are lucky they might spot some of their favorite animals that they have sighted- deer, turkeys, a river otter, bunnies, a red fox,  and my favorite the Great Blue Heron. If we see the Heron we know we are in the good fishing spot because Heron’s are such great fishing birds. If we had enough rain that means you need your waders to get to the island, the best of the best fishing on the Moodna Creek. Mike’s maternal side will click in and Sara will have a hat for the sun, sunscreen, bug spray , bandaids just in case and plenty of cold water. Mike will lug a folding chair for his princess in case she gets tired and doesn’t want to sit down in the muddy banks. They will look for Indian arrowheads, and focus on how healthy the Moodna looks, and speak about pollution and protecting the wildlife. A simple day, but so much to enjoy , their time together , very very special. Hope your family has a special Father’s day too. Lisa Bock

0530110937059

 

Memorial Day has come and gone. Loved being in Washingtonville for the parade. We could not have gotten a more beautiful day.

 

Memorial day 2014 022

This summer  I am looking forward to warm days, summer fun, and time spent doing the things that will make me happy. The older I get the easier it is to enjoy myself.  If I made a list of what will make me happy this summer I would include :

 

1. Start and finish my kitchen remake.

 

2. Get my garden in better shape.

Memorial day 2014 025

 

3. Spend quality time with my family and friends!!! How about at a concert in Bethel Woods??

 

020

 

4. Send my daughter to sleep away camp for a week!!!!

 

022

5. Learn how to relax. Spend some time mastering this.

 

6. Have multiple backyard bbqs.

 

7. Light up our outdoor fireplace!!

 

8. Let go some of those awesome sky lanterns!!!!

 

9. Try not to make this list any longer because see #5 !!!

 

Happy Summer to all!!

Lisa Bock

 

I have added a new job title to my list of many job titles.  I am going to borrow this from my friend Jeanne, I hope she won’t mind. My new title is “Personal Assistant to Sara Bock Productions”.  This is a great job description that echoes the excitement of all our “end of the year” festivities and the amount of work involved getting out in the community. In the next few weeks we will be hopefully enjoying much deserved abundant sunshine in the Hudson Valley. This season will have me over at the ball field every Sunday morning with Beautiful People for our weekly softball game. Check us out, we always need volunteers:

www.Beautiful-People.us

 

068

 

Our production company is in full operation mode, with a stuffed calendar of events.  Sara and I will enjoy the last class at Successful Learning Center, Inc. where this college semester will come to an end. Sara enjoyed another terrific class, digital photography, which was a big hit with all the students. We will soon see the students work up on their website at:

www.access2college.com

063

 

 

 

Special Olympics can be exciting with the competition, but the most enjoyable activities of this year will be when we participate in the Parents vs. the Flames game.  Last year the parents started in the lead but the younger players moved ahead leaving the younger Flames victorious. This year should be interesting to see how the match up ends.

Special Olympics Parents vs. Flames 019

 

 

 

The” production” job description comes from getting out the door with a young adult with special needs. Check that you have your sun screen, medications, emergency meds, next dose of meds in case the event is longer than you think, and drinks to take the meds with. Then not just any water, Sara LOVES her pink water bottle that matches her pink pocketbook.  Make sure we pack a lunch or snack to take with the medications, and keep a close watch on the time to make sure we are prompt with giving Sara something to eat before the medication is due. We need a hat to block out the sun, and a blanket because Sara will be cold on a hot day. Don’t forget the ice packs, Sara will over heat on a cold day. Then just because, check to see if Sara’s IPod is charged so she can play DJ with tunes on the way to pump ourselves up for the event.  Double check that she invited everyone she knows to the event and that they have RSVP’d that they are coming. Last but not least we need two magnets, one for Sara to turn on her medical device and one for us.  Sounds like Sara Bock Productions is ready for a great spring and a fun filled summer !! Hope you are too!! Special thanks to my production team, as always I could not do this without your help!! Lisa Bock

 

Marist Special Olympics 2014 003 Marist Special Olympics 2014 032

 

 

58151_10151621743519263_277955575_n

 

After having my daughter Sara go to sleep away camp for several years with campers who had service dogs our family started the wheels in motion to get her a dog. Every year Sara has bunked with her friend Lynsay who bring the super dog Webster to camp. Webster comes from Canine Partners for Life. Webster has “alerted” that Sara was going to have a seizure several times while Sara attended the camp. Schools cannot guarantee your dog can alert for a seizure, but they can train the dog to give you help if you have a seizure event. Dogs can get you a phone, open drawers, get your  medication, or a bottle of water from the fridge. Dogs are trained to stay with their master until they have recovered from their seizure. Within the service dog community you can find several categories of training schools. There are dogs for people who are blind, have autism, diabetes, mobility issues, and seizure disorders. When picking a school Sara and I were interested in finding a good match for how Sara has treated other pets. In Georgia there is a terrific school run by Jennifer Arnold that uses love and kindness to train service animals, Canine Assistants. Sara treats all our pets like babies, and would not be able to be too firm with a dog, use a choke collar, or be mean in anyway to an animal. This school was a great match to Sara’s loving personality. They offer a follow up service and have someone work with you after you finish the training camp.

 

We have a date in the fall to attend Canine Assistants training school and are busy getting ready. We made a video about Sara’s home and daily activities for the school to review. We have been interviewed, filled out doctor’s surveys, put up a fence, and are searching for a local veterinarian. We have talked to  the programs that Sara attends  to “alert” of this new change.The policies that guide the rules for a service dog fall under the Justice Department ADA. Pretty much any place you can go if you are a person with a disability, your dog is allowed to go also. There were some interesting facts on the ADA web page such as:

 

  • It is not okay to use allergies or fear of animals as an excuse to ban a service dog.
  • Violators of the ADA can be required to pay money damages and penalties.

 

 

To ask about your business, school, non profit and it’s obligation to include service dogs you can contact the ADA  at 800-514-0301 or try them on the web at

 

www.ada.gov/qasrvc.htm

 

 

for frequently asked questions. Complaints can be filed with the same Justice Department if a non profit, business, or school is unwilling to allow a certified service animal in their doors.

 

Consider a donation or volunteer for Canine Assistants contact them at

 

www.canineassistants.org

 

Maybe you have a child with a seizure disorder and are considering a camp for this summer, try to contact the EFNJ Camp Nova program.

http://www.efnj.com/what-we-offer/programs/camp-nova/

 

 

Hope your family finds the right service animal for your family member with special needs.

 

 

Lisa Bock

 

camp nova 2013 012 022

 

 

When Sara was 4 she contracted encephalitis. After a major illness like this you can expect delays and health issues. Some residual problems were more of a surprise than others. Sara takes medication that help with her seizure disorder with the unwanted side effect of altering the way her food tastes. If we change a medications we often change her likes or dislikes of a particular food. Sara would LOVE baked Ziti in December, in January, after a medication change she might not.The next eating challenge she has is with her medical device, a Vagus Nerve Stimulator. It is a small pacemaker like device that sends a signal up to her Vagus Nerve in the brain, helping with seizure control. This signal then travels down through her bariatric system causing many of the food issues we now have. This signal will make Sara feel full or giver her indigestion. The device has settings which the doctor will increase over time. When the gastro-intestinal side effects started getting worse our doctor and our family thought we should hold off any increases in the Vagus Nerve Stimulator settings. Slowly we have been able to increase the setting on Sara’s device and slowly we have seen an improvement in her appetite. This can be rough on a Mom, the one who takes care of the family. Feeding difficulties are real issues for many families with or without children with special needs. Once I adjusted to the new challenge, breathed, and accepted that this would be one of the difficulties of the new device, I was able to focus on things that help Sara at 25 eat more, eat healthier, and gain improved health.

 

Sara is a social eater. She loves people, inviting friends over for lunch always helps her eat more. When we dine out buffets and salad bars are a great choice. There is no waiting, Sara can find foods that appeal to her visually. Sadly, it is fine to serve Sara the same thing over and over again. If she is not in the mood for a vegetable, sliced strawberries and bananas make a great dinner side dish, not just for breakfast. Feeding Sara before she is hungry helps. If she helps cook the meal it tastes better. Get some substitute cooks. Sara will not complain to friends or other family members about what they cook as easily as she can complain to Mom. When Sara’s Dad started making breakfast into animal shapes there was a huge increase in her interest in breakfast.

 

 

 

 

0401140623 0402140627

 

When the going gets tough, the tough get help. I was lucky to attend a feeding conference presented by Ingrid Lucas of Lucas Speech Pathology in Warwick. She can offer advice that would apply directly to your family member. If your child receives special education services you might benefit from a feeding evaluation from your child’s speech teacher. Many students who have Autism need more than just the evaluation, many schools have speech therapists that are certified in feeding therapy .For more information about the services at Lucas Speech Pathology go to

http://www.lucasspeechpathology.com/

 

For more information about the Vagus Nerve Stimulator try http://us.cyberonics.com/en/vns-therapy/ .

 

Good luck, hope your family is eating healthier in no time. Lisa Bock

 

Washingtonville Soccer Shop 027

 

Washingtonville Soccer Shop 035

 

Last week I had the pleasure of stopping in the Washingtonville Soccer Shop to take pictures for a new fundraiser to benefit both Beautiful People and the Country Kids Food Pantry. My daughter Sara, 25, has been participating in the recreation program for Beautiful People since 2012. It is a great fun filled group dedicated to expanding recreation for young people with disabilities. When Sara was younger she contracted encephalitis, a rare complication, resulting in multiple health issues and delays. That never stopped her from LOVING soccer. She plays other sports but for some reason soccer is her number one favorite. Many youth programs are designed for children with special needs, unfortunately most of them stop providing programming once the athlete turns 21. In my research to help Sara reach her ideal health I attend many conferences at NYU Comprehensive Epilepsy Center. Their Director, Dr. Orrin Devinsky, says the number one thing you can do to improve the life of someone with epilepsy is have them exercise. By aging out of a recreation program at 21, getting in enough exercise can be tough. We are lucky there are groups like Beautiful People with the desire to work with all people and are willing to include some older players. When Jan Brunkhorst, the Director of Beautiful People called Sara to see if she would like to play soccer our instant response was, “YES!!!!”

Jan had stopped in at the Soccer shop to buy some new soccer balls for the program. In no time she made a new friend in Tony Martinelli, owner of Washingtonville Soccer Shop, a must go-to store for anyone who loves soccer. He is using his oversized World Cup Soccer ball to draw attention to his raffle. It’s up for grabs, buy some tickets and you could be the winner of the jumbo world cup ball. All proceeds of the raffle tickets sales are going to help the local Country Kids Food Pantry, and our recreation program for people with disabilities, Beautiful People. Stop in the Washingtonville Soccer Shop to support local charities. While you are there check out the World Cup Soccer ball, soccer equipment, or the summer soccer camps they run. Thanks for your help, Tony! It was nice to meet you!!

Need some raffle tickets? Need more information about these great organizations? Try the web at http://www.beautiful-people.us/  and Facebook for the soccer shop and Country Kids Food Pantry

https://www.facebook.com/pages/Washingtonville-Soccer-Shop/174003679315482

https://www.facebook.com/Countrykidsfoodpantry

 

Lisa Bock

Washingtonville Soccer Shop 040

 

This week, I’d like to draw attention to the subject of “Inclusive Community,” as I find it to be a term excluded from most parents’ vocabulary. For some, it is a vague term that really could mean anything from forming a healthy social life to peer influences in their education plan.  For our family, we are looking for ways for our daughter Sara with special needs to get out in her community, enjoy herself, and when possible teach people about our family and the supports we have in place for her.

Sara was four when she contracted encephalitis. This is an extremely dangerous illness and we were lucky when she was only left with a hard to control seizure disorder, complicated health issues, and intellectual disabilities as residual effects of the disease. I was fortunate to have some great doctors that always shared their thoughts with me and helped change the way I look at epilepsy. One of our first neurologists said,” Lisa don’t ever let epilepsy slow Sara down. The medicine needs to catch up with her. Do not slow Sara down to match the medicines let the medicine catch up with her, not vice versa. I cure patients of epilepsy every year. It doesn’t do them any good if they can’t jump on a bus by themselves and get across town”.

This advice reverberated with me and set me on a steady course in pursuit of a healthy productive life for Sara. My advice to parents with children with special needs is that if there is something your children should be doing, find a way to do it safely with supports rather than giving up and saying it is too difficult to achieve.

Food for thought: with the advancement of technology and scientific inquiry regarding brain injury, there could soon be a break through idea that could drastically improve the lives and cognitive function of people hindered by epilepsy. It might be a surgery, device, diet, or drug. Ask yourself: Are you ready for it? Has your child fully experienced what they could in their community? Have you avoided things you think are too hard? What if they didn’t have seizures, would you have tried them?  Stretch yourself; try something difficult.

One of Sara’s favorite activities in the community is attending the local high school play. Sara enjoyed the musical this year, even though it was a long production—the run time was almost three hours. It took a lot of patience and risk-taking over the years to do an event this long—we used to limit Sara’s activities to shorter events as exhaustion sometimes increases the change of a seizure— but we got there, and we really find being out in our town very fulfilling. The kids in “Bye Bye, Birdie” were awesome, and Sara can’t wait to go see the next production. If you are a special needs family, find some activities in your community; you will be glad you helped make our community more inclusive.  Lisa Bock

bye bye birdie 001 bye bye birdie 006 bye bye birdie 011

Often during this colder and snowier winter we have been stuck home with our social, work, and academic events cancelled. This week my daughter Sara asked me about “Cabin Fever”. She had heard some of the members of Santer Fitness in Washingtonville joking about their bout with this common illness. Sara has been working at Santer Fitness for almost two years now. It has been a great place for her to make friends, provide income, and really grow as a person.

028

When Sara was 4 she contracted encephalitis which resulted in her having a hard to control seizure disorder. Since then she has had trouble with language. Some of the delays include finding it hard to build an age appropriate vocabulary. A double entendre, a euphemism and a joke can be hard for her to decipher. What I enjoy about Sara’s curious mind is she will not let this slide. She will work hard to remember what was said, come home, repeat the phrase and ask, what does this really mean? Sara asked for an explanation of that illness that makes you a little sick in the winter?? Ah, I said, Cabin Fever. It happens if you spend too much time indoors because the winter has been so long, too cold, and rough on everyone’s temperament.

029

What has the Bock family done to stay ahead of this dangerous disease? Cabin Fever can be abated by starting a new hobby, arts and crafts, going someplace new, getting some fresh air, and exercising. Hobby wise, Sara’s sister bought her a handful of NY Lottery scratch offs. All had different directions, all with a math concept, either adding, greater or less than, and matching. We are always working on math but these were fun and somewhat age appropriate. Sara is 25, and finding good real life math material can be difficult. Many young people her age love this activity and so does Sara, she won $27 dollars. Her sister promised next week she will come up and Sara will take her winnings and throw another scratch off party, this time it will be her treat.

006

Sara is also is learning how to crochet, not sure we will master this, but even trying can help keep cabin fever at bay for a short while. She did master the new craze of those rubber band bracelets and loves to share her love of arts and crafts with others.

002 012

Here at the Bock house we are waiting for spring, but happy to spend some time together. If spring won’t come to us, we can go to spring- Adam’s Fair Acre Farm in Newburgh had a flower show to brighten the day.

021

I hope your family can find creative fun filled ways to avoid this dangerous winter disease, beware of Cabin Fever.  Spring is right around the corner. LisaBock

031

One thing I know for sure is that parents of children with disabilities worry more than most. When I try to cope, I like to plan for things ahead of time, prepare for the worst, and hope for the best. When it came to approaching my daughter’s second semester of college at a new campus I tried to ease my worries as well as my daughter’s.

College life for Sara 018

Sara started her second college class last month with Successful Learning, a program for students with intellectual disabilities. Prior to the start of class we took a road trip up to the new campus.  Though it was beneficial for Sara to see the campus, it benefitted me in more ways. If she had a seizure at school I already would know how to get there, where to park, and then only have to worry about how Sara is doing. In 2011 my daughter Sara received an implanted device that helps with her own seizures. Though it doesn’t mean she’ll be 100% after a seizure or be able to completely stop one, she knows how the device works and what it does.

059 060

Sara really enjoyed the first semester at college and showed enthusiasm in trying a different class the following semester. Her new class also meant a new teacher, and though the staff at her day program has been trained to use the Vagus Nerve Stimulator, it meant Sara would have to be comfortable in her knowledge of her device. The day program director had told the parents that staff would drive the students to campus and accompany the students to the program.  I asked Sara if she knew what to do if the staff wasn’t in her class. She assured me she would alert the teacher and give a short training on how to use the device if she were to have a seizure.

Sara came home from her new class, excited about the new material, and willing to answer my questions about the first day. When I asked her about the staff from the day program she informed me that, no, the staff never went into the classroom and never spoke to the teacher. I had nothing to worry about because Sara assured me the teacher was fine with the explanation she gave about the device and how it operates.

I called the program director of Successful Learning Center. Sherry, the director, was very pleased to see Sara’s independent streak and she assured me she would check with the teacher on whether she had more questions. The director was sure Sara did a fine job explaining the device. This is exactly what I needed to hear. I think it’s time for this mom to give her daughter a little more room to advocate for herself about her health care needs. However, I will be here if she needs me.

Learn more about Sara’s classes at www.successfullearning.com  . Lisa Bock

026

About Me!

This blog is where we comment on the issues and topics Hudson Valley parents deal with every day. We invite you to join us! Please leave us your comments.

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Join 61 other followers

Categories

Advertisements