Down The Tube

At Ashley's annual physical yesterday, her doctor suggested that I start tube feeding some blended up fruits and vegetables.  Although Ashley used to be exclusively tube fed, after a couple of years of feeding therapy at our local children's hospital, she is eating all her meals by mouth.  Unfortunately, her diet by mouth is not the healthiest.

The only fruit she will eat (sometimes) is applesauce, and the only vegetable is raw spinach.  Other than that, her diet includes classic unhealthy kids fare - chicken nuggets, mac and cheese, mashed potatoes, cheetoes, etc.  So the doctor's recommendation makes sense.  Now I just have to figure out how to make it happen.

I need some advice from other tube feeding moms and dads.  Does it matter what fruits and vegetables I use?  Should they be raw or cooked?  I have a Vitamix blender and I don't think it will be problem getting everything to the proper consistency for Ashley's tube, but what do I do if it does get clogged?  And, if you do feed real foods rather than formula are there any issues I should be aware of, something that might happen that I wouldn't anticipate?

Plus I need some of your best 'recipes' for blending fruits and veggies!

Obviously I am needing a lot of advice for this, eh????

A Found Treasure?

We're planning a vacation soon, and one of the things my kids are really looking forward to doing is playing miniature golf. Finding a wheelchair accessible mini-golf is often a challenge though. But my son, Chip, is very determined, and went off in search of all the mini-golfs near where we would be vacationing to see if any of them stated on their website that they were accessible.

He found one that was listed as accessible on the website, but just to make sure, he emailed the contact person. Here is what he received in reply:

Mr. Nickerson,

My name is Jim Watters, General Manager of Professor Hackers Lost Treasure Golf. I am pleased to inform you that we are in fact totally ADA accessible and you should not incur any issues with a wheelchair. In fact we even have specially made putters for use also. We look forward to your visit, please ask for me and I will personally see that all goes well for you and your family members while visiting our park.

Sincerely ,
Jim Watters

Something tells me I am really going to like this place!!! Professor Hacker's Lost Treasure Golf

Special Exposure Wednesday

Who can be the first to tell me what these pictures are????  (Answer below, but don't cheat and go there first!)

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Answer - they are moth wings. I don't know who and I don't know why, but something or someone pulled all 4 wings off a giant moth and left them on my front porch.

All Grown Up

I thought I had a pretty good idea about how things were going to change, about what things needed to be done when my children with disabilities turned 18.  I think I was wrong...

I knew that I had to get a power of attorney drawn up for both Ronnie and Ashley.  I remembered that from when Jessica turned 18.  What I don't remember is needing it as much as I have.  Hospitals, doctor's offices, even the day support program I am exploring for Ashley have all asked for it.  I'm really glad I started the process early or we might have been in a real bind.  (I chose not to go for guardianship because I believe my children are capable of making decisions, but sometimes they need help with those decisions.)

I started the process to get Social Security for Ashley, but haven't started it for Ronnie yet.  I went online and filled out the form titled 'Social Security Disability Application."  I got all the signatures done (needed two witnesses), and filled out information for about 15 different doctors and medical facilities.  Then two weeks after doing the form online, a real SSA person calls me to let me know that I filled out the wrong form.  I should have filled out the form for SSI not SSDI.  SSDI is for people for have previously worked and then become disabled, not someone who has been disabled since birth.  I was fortunate that the real person who called was very helpful and very well informed.  I think we might be on the right track now, and after I get signatures (witnessed) yet again, hopefully we will get a decision soon.

Then there are the things I haven't done yet - contacted the local Resources for Independent Living office to get Ronnie some help in passing his driver's test; pushed our state's Disability Resource agency to ensure both kids get the employment resources and help they need; and set up bank accounts for both Ronnie and Ashley so in the event they are approved for SSI, they will have a place for the money to be deposited.

I'm sure I'm forgetting stuff too.  If any of you have been through this adult services stuff, please share and let me know what else I need to do!

Thankful

Happy Memorial Day and a big thank you to all the people who have dedicated their lives and honor for the United States and all of us who enjoy the freedoms guaranteed by the Constitution and the ideals of America. You will never be forgotten.

And a special thank you to Dad-Dad, my father, and Grampy, my former father-in-law and Chip's grandfather, both of whom served in the armed forces. Unfortunately, I do not have a picture of my father, but here is one of Grampy holding Chip when he was just a wee little thing...

It Will Happen

I have lived with a dream for a very long time now, and it is time to make that dream a reality. It won't be easy. It will take years, more than likely. But I and a small group of like minded friends vow to make the dream come true. We want to improve the lives of adults with disabilities, and I believe we can. I'll post more information as we progress in our journey, but for now, please keep us in your thoughts and prayers.



The future belongs to those who believe in the beauty of their dreams.
Eleanor Roosevelt


Every great dream begins with a dreamer. Always remember, you have within you the strength, the patience, and the passion to reach for the stars to change the world.
Harriet Tubman


A dream doesn't become reality through magic; it takes sweat, determination and hard work.
Colin Powell


To accomplish great things, we must not only act, but also dream; not only plan, but also believe.
Anatole France


Change will not come if we wait for some other person or some other time. We are the ones we've been waiting for. We are the change that we seek.
Barack Obama


Never believe that a few caring people can't change the world. For, indeed, that's all who ever have.
Margaret Mead

Time to Really Live

Zach died this past Monday.  The really important thing though is that he LIVED until last Monday.  This is a long video, but chances are it will change your life....

Special Exposure Wednesday

My little fuzzy babies are starting to grow! Spiced pickled peaches to come....

Sensory Gardens

Ashley's teacher told me today that she would like to establish a sensory garden at school, and I am very excited about that! Here's how wikipedia defines a sensory garden:

A sensory garden is a garden or other plot specifically created to be accessible and enjoyable to visitors, both disabled and non-disabled. The purpose of such a provision is to provide individual and combined sensory opportunities for the user such that they may not normally experience.

A sensory garden, for example, may contain features accessible to the disabled individual such as: scented and edible plants, sculptures and sculpted handrails, water features designed to make sound and play over the hands, textured touch-pads, magnifying-glass screens, braille and audio induction loop descriptions. Depending on the user group, other provisions may integrate sound and music more centrally to combine the play needs of younger users with their sensory needs.

Many sensory gardens devote themselves to providing experience for multiple senses; those specialising in scent are sometimes called scented gardens, those specialising in music/sound are sound gardens where the equipment doubles up to provides an enhanced opportunity for strategic developmental, learning and educational outcomes.

Sensory Gardens usually have an enhanced infrastructure to permit wheelchair access and meet other accessibility concerns; the design and layout provides a stimulating journey through the senses, heightening awareness, and bringing positive learning experiences.

And here is some more information from the University of Florida and NC State University:

University of Florida - information on how to build a sensory garden

N.C. State, sensory gardens as an extension of the classroom

Finally, here is a link to a special needs school that has established a sensory garden.
William Carter School, Sensory Garden

I think this is such a good idea, and really hope it comes to fruition. I will post pictures if it does!

Beep Beep

Ashley has been to beeping Easter Egg hunts, but never played beeper ball. I don't even know if there is a team in our area. The beep has to be very high pitched and loud for her to hear it, but I know she would love to play!

Check out this video of a Beep Ball team!

Vacation Time - Part 2

This is a continuation of yesterday's post. I hope yesterday's post and this one provide some helpful information for your summer vacation planning. I know that compiling it made me want to make some plans right away!

Disability Group Cruises
1-800-516-5247
Vacations for Adults and Families living with
Autism, Down Syndrome and other Related Disabilities
STAFF
Adventure Ocean is staffed by professionals with college degrees
majoring in the health care, education and/or psychology/sociology
fields, and have experience caring for individuals with special needs.
PECS
We offer a variety of PECS (Picture Exchange Communication System)
pictures to our guests traveling with non-verbal children and/or adults. The
photos depict a number of actual events that take place during our cruises to
help families develop a cruise picture schedule.
SOCIAL STORY
A special “Social Story” has been created to assist with what to expect
on the first day of the cruise. A printable link to the Social Story is
available to our guests approximately 2-4 weeks prior to their cruise.
DIETARY ACCOMMODATIONS
We work with the Cruise Line to meet most, if not all, of the dietary
accommodations for each guest including gluten/Cassien Free meals.
SPECIAL ACTIVITIES
The regular Adventure Ocean activities are available for each child to
participate in, which include: video games, movies, group games, educational
(science related) activities, and much more. Aside from the regular activities,
our children will receive customized care, that will include activities provided to
them, based on their special needs and likes/dislikes.
CHILD CARE
Program section for opportunities to have your children cared for by
professionals during the day and evening. Some cruise lines (like Royal
Caribbean) offer in-cabin baby-sitting. You can check for availability while
onboard by visiting the Guest Relations Desk.

NATIONAL PARK SERVICE ACCESS PASS
A free, lifetime pass available to U.S. citizens or permanent US residents who have been
medically determined to have a permanent disability. The Access Pass is free, and is valid for the lifetime of the pass owner. The Pass also allows the caregivers to enter Federal Recreation sites free when accompanying a child with a disability and provides the pass owner a discount on some Expanded Amenity Fees

Virginia Shenandoah National Park
National Park Service
National Park Accessibility Guide
scooters or wheelchair use or rental


Alpenglow Adventures
319-621-0149
non-profit organization that organizes hiking trips around the world that bring people with physical
disabilities together on the world’s most spectacular hiking trails. We have some big plans for 2012 including trips to access trails in Patagonia as well as additional trips in the United States to the bottom of Grand Canyon National Park.


ACCESS VIRGINIA
Virginia Travel Guide for Persons with Disabilities


Virginia Beach, Virginia Accessibility
Two beach wheelchairs are available on a first come, first serve basis from the beach attendants at 17th and 24th
Streets. Visitors may borrow the wheelchair for a half day. If no one else has requested the chair, it may be kept for
the remainder of the day. There is no charge for this service. Personal wheelchairs can be left at the rental
station until the person using the all-terrain wheelchairs returns. If a citizen with a wheelchair prefers to leave
their chair on the boardwalk, then the city will make a locking device available at no charge.

Disabled Parking: Designated disabled on-street parking is available at Rudee
Loop, 2nd, 6th, 7th, 10th, 11th, 12th, 14th, 15th, 16th, 20th, 22nd, 23rd, 24th,
25th, 26th, 30th, 33rd, 34th, 36th, 37th, 38th. Designated disabled off-street
parking is available in all municipal lots.

Accessible Taxi-Cabs: Black and White Cabs of Virginia Beach has available six
wheelchair-accessible cabs. This service provides accessible on-demand transportation
without service hour limitations. Taxicab service can respond at all hours of the day or
night and to all locations in Virginia Beach, including to areas where there is no fixed
route bus or paratransit service available, and with no requirement that an advanced
day reservation be made. Additionally, wheelchair service will be available for all trip
purposes. The wheelchair cabs charge the same fares as all taxis, which are listed on
Black and White’s website: www.vabeachblackandwhitecabs.com.


JT’s Grommet Island

Beach park and Playground for every”body”
Virginia Beach Oceanfront
100 2nd Street Virginia Beach, VA 23451
The nation’s first fully handicap accessible beach park opened in 2010 at the Virginia Beach oceanfront. Located between 1st and 2nd Streets, JT’s Grommet Island Beach Park and Playground for Every”BODY” offers 15,000 square feet of activities accessible to everyone, regardless of ability.

Ramps and wood polymer decking lead to beach seating areas. The playground includes adapted slides, monkey bars, and raised sand tables for building sandcastles. Visitors may also rent beach wheelchairs that can travel on sand.


ACCESSIBLE TRANSPORTATION
Rental Cars that accommodate Special Needs
http://specialchildren.about.com/od/travelwithspecialneeds/qt/rentalcar.htm
Many car rental companies offer vehicles that have been modified for use by drivers or
passengers with mobility issues. Check out the web address above to link to
information specifically about rental car disability accommodations for Avis, Hertz,
Alamo, Budge, and National Car Rentals.

Accessible Van Rentals
1-800-642-2042
http://www.wheelchairgetaways.com/
http://www.wheelersvanrentals.com/

Train Reservations for Accessible Space
http://www.amtrak.com/servlet/ContentServer?c=AM_Content_C&pagen
ame=am%2FLayout&cid=1241245658299
Information on traveling by train in the U.S. for people with special needs,
including making reservations for accessible space, station accessibility, service
animals, onboard communication, and meal service.

Bus Accommodations
http://www.greyhound.com/en/ticketsandtravel/disabledtravelers.aspx
Information on traveling by Greyhound bus including boarding
assistance, storing a wheelchair, and traveling with a service animal.

Enabled Rver
http://www.rvproperty.com/rvs_for_handicapped.htm
http://www.handicappedtravelclub.com/
articles on topics related to RV travel, such as accessible RVs, the
Handicapped Travel Club (HTC), travel guides, campgrounds and
specific destinations, resources, and adaptive equipment

Cruise Lines and Ship Accessibility
http://access-able.com/dbase/cruise.cfm

Accessible Home Exchange
The disability holiday exchange site created by disabled people for disabled people Matching houses allows people who have disabilities to swap houses with other people who have the same accessibility needs. If my accessibility
needs match yours, our houses will be accessible to one another. You join and describe your house – including its accessibility in quite some detail. When you log on to look for matching houses to swap with, only houses likely to be
accessible to you are shown. And likewise your house will be to them.

Travelers with medical needs
IMPORTANT information about traveling with Oxygen
Get information about the restrictions and accommodations made for air, train, cruise travelers with oxygen needs.

Vacation Time - Part 1

I have a love/hate relationship with summer vacations.  I so look forward to taking a vacation every year, but I don't like the frustrations I sometimes experience related to mobility and accessibility.  But this year, I have done some research and found vacations specifically targeting people with all types of disAbilities.

It's a long list, so I may break it up into a couple of posts.  Here is the start of the list.  And please feel free to add information about your own positive vacation experiences for people with disabilities.

Oh, and one more thing - I have not personally visited or used any of the services listed. I just found out about them, but do plan to check them out!

Eggleston Services - Summer Vacations for Adults with Disabilities
** Now Taking Reservations; Call 757-487-6062 for details ***
2210 Cedar Road Chesapeake, VA 23323-6303


People and Places
(716) 937-1813 (716) 496-8826
E-Mail vacations@people-and-places.org
People and Places is a not-for-profit organization providing small group, year-round vacation opportunities for persons with developmental disabilities since 1975. Each trip is limited to 8 participants who travel with two staff escorts. Escorts make every effort to help everyone feel welcome and comfortable in their new environment and to make new friends! They supervise the administration of medications, provide reminders and selfcare assistance as needed, and monitor vacationer spending money upon request. They incorporate individual interests, preferences, and choices
throughout each trip to make each vacation a meaningful and memorable experience.


SPROUT
Group Vacations for individuals with disabilities ages 21 years and up.
Usual group size is 10 participants with 3 Sprout leaders


Sundial Tours
Email pat@sundial-travel.com
Call 1-800-547-9198 1-503-325-4484
Sundial has been providing special vacations for developmentally disabled adults since 1968. Tour guide ratio is 1:7 depending on capabilities of the groups.


SEARCH BEYOND ADVENTURES
provides all-inclusive escorted vacations for travelers with developmental disabilities ages 17 and up. Tours operate with one staff escort for every two to five participants. Our staff assist with participants' needs so generally a personal care attendant is not needed. Prices include EVERYTHING: all activities, accommodations, meals, transportation, tour staff, and tips.

Ventures Travel, LLC provides opportunities for older teens and
adults with disabilities to travel to popular destinations across the United States, Mexico, and Canada.
866-692-7400


Morgan’s Wonderland
Morgan's Wonderland is located in San Antonio, Texas. It is the World's First Ultra Accessible Family Fun Park designed specifically for children and adults with special needs, their family members, caregivers, friends and the entire community. This 25-acre park is a unique oasis, that through the spirit of inclusion, allows people of all abilities to play, learn and share life changing experiences together, in a fun and safe environment.

Activities & Amenities include:
 air conditioned/heated and oversized ADA accessible restrooms
 3 Playscapes
 Train Rides with wheelchair accessible cars
 Ultra Accessible Carousel
 Amphitheater
 Catch-and-Release Fishing
 Water Cannons & Remote-Controlled Boats
 Gymnasium (basketball, volleyball & tennis)
 Walk and Roll Path around lake
 “Around the World” – themed rest areas
 Water Works - Water Play Area
 Music Garden
 Swings (several types including wheelchair swings)
 Sand Circle™
 Sensory Village™
 Garden Sanctuary with Memorial Wall
 Several Rest Stops, Picnic Areas & Pavilions
 2 First Aid Stations & Feeding Room
 Braille Signage, 3-D Park Model & Service Animal Rest Area
 VIA Transit Center
 Secured entry and exit, Radio Frequency Identification (RFID) wristbands and
monitors, PA and emergency notification systems, video surveillance, and 8’
perimeter fencing.

Special Exposure Wednesday

This birdhouse was one of my Mother's Day presents.  Yes, we are a strange little family...

Watching

I'm getting increasingly more uncomfortable with the thought of a relative stranger acting as Ashley's personal care attendant when I am not at home. I'll be switching soon from hiring aides myself to using an agency to provide an aide. And while I don't really anticipate any issues, I would definitely be more comfortable if I could have a view into my home when I am not there.

I'm considering a monitoring system, a nanny cam if you will. I want something that will work wirelessly with my home's router, and something that can record up to 4 hours or so of video either on the device itself or on the 'cloud' somewhere. I want to be able to check the video from either my work computer or my smart phone. And I want access to be secure, controlled by a password at least.

I just don't know exactly what to look for or even what questions to ask of a technician.

Have any of you installed a similar system? Have you been glad that you had it installed and paid what appears to be a pretty high cost for the system? Have you found the quality of the video acceptable? Was audio also recorded?

In what parts of your house did you install cameras, and how many cameras did you install? When the cameras are recording, do think make any perceptible noise?

Did you notify any caregivers that you hired that you were monitoring the house, or did you not mention it? Did you ever have to take some sort of action against the caregiver based on what you saw on the monitor? Did the other members of your family feel uncomfortable knowing the cameras were there?

And, if you have installed a system, can you share the details - brand, costs, etc?

And finally, what do you think - is this a good idea or a bad idea?

So Very Proud

Hoping This Dream Becomes Reality

"We envision a Children’s Hospital System totally dedicated and exclusively committed to the care of the region’s children. A medical facility where no child will ever come into contact with an adult patient, or a staff member who is not trained to care for children."

We have lived in the same area ever since I had my son, Chip, and since I have adopted my other children. In our area are multiple hospitals, one of which is a well-respected teaching hospital, many specialists, and a cadre of doctors we like and respect. Problem is, they are scattered all over the area.

For instance with my son, Ronnie. I adopted him at age 15, and he is now 18. He sees a pediatrician near our home, a nephrologist at the teaching hospital, a surgeon at our local children's hospital (which has recently been sucked up by the teaching hospital), and attends therapy at another location. When his urologist left the teaching hospital, we had to drive 70 miles to another hospital just to find an urologist.

Ashley has been seen by multiple doctors at the teaching hospital, sees a neurologist at a second hospital, has also had to make the 70 mile drive to the distant hospital, has been in the emergency rooms of three different hosptials, has had testing done at three hospitals, and has spent too many hours to count at the children's hospital.

The record keeping for both of them can be overwhelming at times.

I want one place for my children to go - one place to find all the services we need - one place that is totally dedicated to meeting the medical needs of children, special needs or otherwise.

Hopefully soon there will be such a place in my area. An organization named PACKids (Pediatricians Associated to Care for Kids) is driving a grassroots effort to create a free standing facility dedicated to children. That's their vision statement at the top of this post. And this is their mission statement:

"This Children’s Hospital will be a center of excellence. It will consolidate the talents of health care providers committed to the health and well-being of pediatric patients.

We will support innovation and research into the prevention, causes and treatment of diseases that affect children and be dedicated to the next generation of physicians, in particular pediatricians, pediatric specialists and allied pediatric health professionals.

We will transform care into a fully integrated system providing for the needs of all children. We will provide for the medical, emotional, social and spiritual needs of children and their families. We will embrace diversity while providing advocacy for the health and well-being of the region’s children."

Exactly what we need and want...

Visit the PACKids website to learn more!

Caring for Kevin

I've written many times in the past about how difficult it is for Ashley to receive medical care, especially medical care at a hospital. And unfortunately, she often has need to be in the hospital.

Even though she is significantly visually impaired, she knows, just knows somehow, whenever we pull into the parking lot at the hospital. She tenses and things go downhill from there. We are at the point that no procedures can be performed without anesthesia, and even prepping her for the anesthesia is extremely traumatic.

So I understand completely what Kevin is going through. Change the age and where she lives in the story, and you could be describing Ashley. Fortunately for Kevin, there are doctors that 'get it' and are making a difference for Kevin and others similar to him. Now if I could just find that where we live...

The good news is that I just might be able to...check back tomorrow for what I hope will soon be a reality in the area in which we live!

Special Exposure Wednesday

Are we eating lunch outside today, huh....huh??? Are you going to share....are you....are you? We would share with you....really we would.....

Justice for Jenny

Have you heard about Jenny?  If not you need to read through the links below.

A bike accident left 29-year-old Jenny Hatch with nowhere to go, when her employers took her in. Now, they are in a legal battle to keep Jenny living where she wants to be.

Jim Talbert and Kelly Morris want to help Jenny by letting her live with them, but Jenny's mother has fought to keep the fully functioning young woman with Down Syndrome inside group homes.

Support for Jenny is growing.  Acknowledgement of the fact that she is capable of making her own decisions is what she wants.  The outcome of this case will be very important not just for Jenny but for everyone who has a disability or has a family member with a disability.

All this is just one of the many reasons that I refuse to have my children with disabilities declared incompetent.  They need my help but not my full guardianship.

Take a few moments and hear Jenny's story.  Then decide what you would do if you could decide this case...


Jenny's Guardianship Battle to Commence

Jenny Gets A New Attorney (BTW, this is the same attorney who has made such an incredible difference in my Ashley's life. He is the best of the best!)

Jenny Destined for Group Home For Now

Jenny's Court Battle Begins

Facebook page set up by two people who are advocating for Jenny

Justice for Jenny

Told You So

I must admit that I find great pleasure in pointing out to certain people how wrong they were about my beautiful Ashley. You know, those people who said she should be institutionalized, that she would be incapable of communicating or learning the most basic of skills, and that one particular school division employee who told me I needed to be realistic about Ashley's future.

So to all those people, I want to show you something. You may not think it is anything special. You may call it a fluke or a "scattered" skill. You may say she doesn't really understand...but you are wrong on all accounts.

Ashley signed her name on her SSDI application. Yes, it's only her first name, but it's a start. She got 6 letters, 6 well spaced letters, of her first name on the signature line. She understood that because her signature was not easily readable that she had to have two people also sign saying that it was her signature. But she was OK with that. She wants her SSDI and like her Power of Attorney, she will be signing it with her name.

And oh yea, she's deafblind.

Two Words

Although this video is about a British initiative, I would love to see something similar here in the states.

Special Exposure Wednesday

Shopping for lots of good fruits and vegetables...now if she would only eat them...