Friday, December 23, 2011

Emotional Segregation and The Intellectually Disabled

Life for my daughter, Kate made a huge step toward independence when her high school gave her a spot on her high school track team.  At at time when there was less mainstreaming for the intellectually disabled, her being a part of the track team was a real accomplishment.  What do intellectually disabled students learn for taking part in athletics in school?  They learn to work as part of a team, a necessity for them after graduation when they'll have to work with people on the job, and not just intellectually challenged people.  They also learn they CAN DO.

Too often the intellectually challenged or students with other disabilities are emotionally segregated.  Not made to feel like they are part of the rest of their school or school activities.  Emotional segregation, you see, is not against the law.  Emotional segregation 'just happens.'  Schools don't do it, in fact some schools encourage students of all capabilities to take part. What makes the difference in whether 'emotional segregation' occurs is the attitude on the student level. 

How can we prevent emotional segregation?  Part of the reason emotional segregation occurs is ignorance.  The students in regular ed don't really know anyone in special ed.  Not REALLY.  Oh they may have them in one of their classes, or in lunch, or gym, but they don't hang out together.  Not in school, not after school, not in school activities. 

How can we make this change?  The first thing we need to do is educate the teachers who are either coaching or supervising after school activities to encourage all the students to work together.  Not just the college prep kids hanging out together, not just one racial group hanging out together, no, everyone working together, hanging out together. (Yeah, I know, there's a more up to date term for it, but...)

My daughter's track coaches were great, so were her team mates.  They made her part of every part of team sports.  She practiced as hard, ran as hard, picked up hurdles after meets, went to parties with the rest of the team.  And I suspect they encouraged the leaders on the team to make her a big part of the team. 

What Kate learned in track was invaluable. It made her feel she could conquer the world.  Live on her own.  Do it herself.  It made her proud of her accomplishments.

So thank you John Grube and the rest of the track coaches.  If you ever wonder if you've changed someones life, you have.  Kate's.  Thank you all.

Thursday, December 22, 2011

The Scarlet "U" -- And How to Find Subsidized Housing

If your son or daughter is planning on moving out on their own, the chance is they'll need housing assistance in the form of a housing voucher from you local housing authority.  OK, once you luck out and are one of the lucky few who gets one of these vouchers (that are few and far between) what next?

Your housing authority will give you a list of approved housing, apartments that are already approved by the Housing Authority, and you are welcome to check them out.   But we live in suburban Philadelphia, and the apartments they referred us to were... well... dangerous.  Especially for a girl living on her own.  So what to do? How can you find an apartment that will be SAFE and be willing to take a housing voucher?

In our area I quickly found that apartment complexes usually didn't want to accept these vouchers, and legally they don't have to.  After making multiple (over 20) phone calls, I finally took the hint--there's no room at the inn, if you're disabled and have a housing voucher.  You're unwanted. Undesirable.  Presumed to be the tenant from hell.  So where to next?

I then moved on to my local newspaper and Craigslist.  Again, I ran into "No," and "No" again and again.  And a few more colorful comments from rental agents about people with vouchers.  It didn't matter that my daughter wasn't like the tenants they described, simply having a housing voucher put a huge "U" on her forehead for UNDESIRABLE. 

But never let it be said we didn't persevere.  We talked to people living in apartments hoping they'd let us know when an opening was coming up so we could be the first one's in the door.  But that didn't work.

And sometimes it wasn't that they didn't want my daughter, it was there was NO WAY my daughter was going to live in the conditions some apartments offered.  The ones occupied by armies of cockroaches.  The brigades of mice and other rodents.  Oh yes, and then the ones with the drug dealers living in the apartment across the hall.  After the next 20 places we looked at we were getting really discouraged.  You only have a limited amount of time to  find an apartment so I was getting a tad desperate.

But along the way I learned a few things. One was that taking my daughter with us to ask about the apartment always got a better response than just calling on the phone.  Yep, it's way harder to turn down a five foot tall 100lb soaking wet 27 year old than it is tell me over the phone 'no room at the inn for people with housing vouchers.'  Her excitement over moving out was contagious.  She had a unique way of making people who really couldn't change policies want to change them.  And when after 79 phone calls we finally found her an apartment from the 80th call we learned the most important thing--it's not how pretty the apartment is or it's location, it's about finding a good match between a landlord and your son or daughter. 

Kate's landlord, Nick, is great.  He fixes things if they break and well, let just say one of the things we were all thankful for on Thanksgiving was Nick.  Nick takes care of Kate--looks out for her interests.  Not in an intrusive way but she feels secure knowing if something goes wrong in her apartment he'll be there to take care of it as soon as possible. 

So that's my suggestion, look for a landlord who is a good match between your son or daughter.  Yes, it's nice if the apartment has a pool, or a washer dryer in the apartment, or the heat is paid for as part of the rent, but best of all, the one perk an apartment can have is a landlord who cares.  And care back.  Take care of his apartment--make him/her glad they rented to you. So when it's someone else's turn to try to rent from him/her they'll have a good experience with The Housing Authority to look back on. Pay it forward.

Wednesday, December 21, 2011

Making Meatloaf -- If You're Moving Out You Need To Learn To Cook

One of the trickiest things you face moving out is cooking for one.  Since it's less expensive to cook using larger quantities and freezing some, the recipe below is perfect to make and split up into food for one night plus some to freeze in small loaf pans.  Magically providing you with more than one night's food with the same amount of work as one night of meatloaf.  I do love fast and easy dinners!

Magic Meatloaf
8 Servings (this will let you freeze some in small tin loaf pans with 2 person servings per pan)
  • 1 1/2 pounds ground beef
  • 1 egg
  • 1 onion, chopped (you can buy this pre-chopped if chopping is difficult for you)
  • 1 cup skim milk
  • 1 cup Italian bread crumbs
  • salt and pepper to taste
  • 2 tablespoons light brown sugar
  • 2 tablespoons dark prepared mustard
  • 1/3 cup ketchup


  1. Preheat oven to 350 degrees F.               
  2. Combine beef, egg, onion, milk and bread in large bowl.
  3. Season with salt and pepper to taste.
  4. Place 4 small loaf pans if you want some to freeze for another four night later, OR form into a loaf and place in a lightly greased 9x13 inch baking dish lined with foil to make clean up easier.               
  5. Combine the brown sugar, mustard and ketchup in a separate small bowl.
  6. Mix well and pour over the meatloaf.               
  7. Bake at 350 degrees F (175 degrees C) for 45 minutes.


Need Some Power for Your Family? Powercard That Is? See How To Win A $50 Powercard for Dave and Buster's

OK, so it's not really power, it's a Powercard, for Dave and Buster's!  But I bet you need one of those too! Do you love Dave and Buster's but always run out of money for games? Wow, I know my family always does!  So who wouldn't want to win a powercard for Dave and Buster's?  And not just any powercard, but one for $50!  Visit this link to Defeating The Squirrels blog and find out how to enter! Click the 'read more' part to find out the details.  Dave and Buster's are having a fabulous Family New Year's Eve celebration at their Plymouth Meeting PA and Franklin Mills, Philadelphia PA locations, so you know you'll want to win that Powercard so you can use it then! 

Your entry will give the chance to win a $50 powercard (courtesy of D&B's) just in time to use it at their Family New Year's Eve Party!  Reservations are a must.  So make reservations at their Plymouth Meeting or Franklin Mills locations to take your children to their first class family New Year's party that includes games, a wow worthy buffet, a magician, balloon drop and a LIVE DJ.  Yes, it's safe to say Dave and Buster's is your go to venue for a family New Year's Eve celebration!  They've designed the party to have something for everyone!  All tickets must be pre-paid.  To read more about the details, my post about their party is here.

Enter to win at Defeating The Squirrels (and other life lessons I learned from my mother and other important people) and get that Powercard for your family!

All Entries must be posted from Defeating The Squirrels website

How to Enter & Rules:
USA Only/21+
Must post a comment at, NOT UNDER THIS POST! Tell me why you like D&B,and/or why you like reading Defeating the Squirrels
Other Entries (1 entry for each)by:
Tweeting About the Giveaway
Follow @theweddingqueen on twitter.
Ends Dec. 30, 2011. 
Winners notified by email

Defeating The Squirrels is a sometimes serious, sometimes tongue in cheek look at life, designed to make you laugh or at least chuckle!  So laughter and a chance to win a Powercard and get more info about D&B's family New Year's Eve party head over to Defeating The Squirrels to read, enter and hopefully be a winner!

**the writer has not received any additional compensation other then the $50 Powercard the winner will receive.  The only benefit received is in additional readership.

Thursday, November 24, 2011

Census & Disability in School Age Children 2010

The 2010 United States Census showed that about 5% of all children who are school age have a disability.  The American Community Survey found that of the nation's 53.9 million schoolchildren ages 5 to 17, about 2.8 million were reported to have a disability in this census. (This excluded children in institutions such as juvenile correctional facilities, group homes for juveniles, and residential schools for people with disabilities.)  If these children were added the number of children with disabilities would increase dramatically.  This is the first time this information has been analyzed.  The numbers that resulted from this analysis were markedly different than the calculations done by the National Center for Education Statistics which uses a broader age range (3-21 years old) and which shows 13% have a disability.  (Info from Ed Week)

Children living outside metro areas show 6.3% have disabilities compared to 5% of children in metropolitan areas.  No matter where you live the disabilities were more likely to be cognitive disabilities. Children in the Census were reported to have a disability if they had trouble concentrating, remembering or making decisions.  About 5 percent of children in metro areas across the country were reported to have a disability compared with 6.3 percent of children living outside metro areas. Regardless of where they live, children were more likely to have a cognitive difficulties than other disability types. 

Columbus, Ohio had on the highest child disability rates (7.2%) while San Jose-Sunnyvale-Santa Clara, California had one of the lowest at 2.8%. 

Is the difference in %'s a statistical snafu? Or is it due to the difference in age groups surveyed or that people don't like to report a child as 'disabled?'  As the years go on hopefully we'll find the answers to these questions.  It is critical to know the percentage of disabled young adults who will need transition services in order to accurately plan both state and federal budgets.  If you're a parent who is wary of reporting your child to a census worker as disabled, think again.  It could be effecting the amount of benefits available in your state.

Tuesday, November 15, 2011

Eric Fombonne MD Speaking At The Center For Autism Research

Eric Fombonne MD is speaking at The Abramson Research Center, Room 123ABC, 2615 Civic Center Blvd., Philadelphia PA at The Center For Autism Research on November 17, 2011, 7-10PM.  The topic under discussion is "Current Issues in Autism Research: Epidemiology, Trends in Rates, Environmental Causes and Other Studies."   

Fombonne is a professor of psychiatry and a leading authority on the epidemiology of autism spectrum disorder (ASD.)  He has played a key role in developing assessment tools for clinical and research purposes.

 Dr. Fombonne will discuss the most recent epidemiological surveys from around the world as well as a  world-wide picture of where epidemiological research on ASD is focused today.  He will discuss the proposed hypothesis that ASD has reached epidemic status.  Other topics will be a summary of the current information about the possible environmental causes of ASD and the controversy on autism and vaccines. 

This lecture is for families of individuals on the autism spectrum, professionals supporting individuals on the autism spectrum, and anyone interested in learning more about ASD.

You MUST RSVP to attend. 
Sohee Kim

(CHOP is accredited to provide CME credits by  (ACCME) to provide continuing education for physicians. CHOP has designated this lecture for a maximum 1.0 AMA PRA Category 1 Credit(s) TM.  Physicians should only claim credit commensurate with the extent of their participation in the activity.)

Sunday, November 13, 2011

Recycling For Charities and Liberty Resources

Preserving the environment for the generations of the future is an important responsibility for which everyone should be held accountable. Electronic waste from pagers, cell phones, PDAs and digital cameras continues to increase daily. This waste poses a serious threat to the environment. Until recently, legitimate wireless recycling programs have been few and far between.

Recycling for Charities is a 501c3 Non-Profit Organization that allows individuals an opportunity to recycle cellular phones, PDAs, Palm Pilots, digital cameras, and iPods for value that is then donated to the charity of their choice. Liberty Resources has partnered with RFC to help protect our environment while raising money for Liberty's programs and services for people with disabilities.
For each wireless electronic donation provided, RFC contributes a minimum of one dollar to Liberty Resources. Recycling through RFC is beneficial for people with disabilities, the environment, and is also tax-deductible! When you make a wireless donation, everyone benefits! 

Thursday, November 10, 2011

Four Things I Wish Someone Had Told Me

Four Things I Wish Someone Had Told Me About Being A Parent of Special Needs Children:

  1. Ask for help.  Wow, this is the hardest one to do, but one of the most important.  You don't realize what's out there until you do! Finding out you're not alone and having a support circle can be critical when you hit THOSE days when it seems like nothing is going right and NO ONE gets what it's like.
  2. Consider counseling for siblings, spouses or parents.  Amazingly enough once you get dealing with the Special Needs issues under control don't forget that others are struggling with a lot of similar issues. Sometimes a sibling feels 'left out' because of all the attention your other child needs on a daily basis.  Work with a counselor so you both are comfortable with these issues.  Grandparents are tricky.  My mother in law is still lighting candles... for her this is how she 'DEALS'.  That's OK.  It's her comfort zone.  Let your parents deal with your child's disability in their own way as long as it isn't hurting your child.  Sometimes a spouse is the one who needs counseling, or couples counseling is the way to go.  Usually one parent ends up handling the issues of your special needs child.  Don't leave your spouse out of the 'loop.' 
  3. Be an advocate for your child.  R. Brooke Porch, former principal at Indian Lane School and former Director of Special Education for Upper Darby Township gave me the best advice I ever received when my daughter was in pre-school and transitioning into the regular school system.  He said "Be the squeaky wheel."  Of course he gave me this advice before he was promoted to Director of Special Ed where he was the person I 'squeaked' to!  (Brooke if you're out there, my daughter is teaching preschool today--thank you.) So be your child's advocate.  Get out there and push for them.  And teach them to push for themselves if need be. 
  4.  Most of all, believe in your child's abilities.  Sometimes when you have a special needs child you forget to concentrate on the 'can do's.'  When my children were first diagnosed I fell into the trap of 'can't do' thinking.  Over the years I grew into the 'can do' mind set.  The sooner you get there the better the outcome.  Give your child the opportunities to TRY. 

Saturday, November 5, 2011

Mad Mex says "There Really Is Such A Thing As A Free Lunch!"

Free lunch you say? A FREE lunch? REALLY? Yes, Mad Mex, that wild and crazy restaurant you used to have to drive to the city to eat in, is coming to Willow Grove! And they're offering YOU a chance to enjoy a free lunch or dinner on them opening day November 8. 

Mad Mex Willow Grove is having a facebook giveaway--EXCLUSIVE to their facebook page! So if you're ready to feed your face, (where else? At Mad Mex Willow Grove!) on Tuesday, November 8 you can have a lunch or dinner on the house!(Not to mention a complimentary margarita (Oh please give me mango!) or Dos Equis for you macho types! Who says there's no such thing as a free lunch? Obviously they were wrong! 

How can you (and up to a party of 4 score an invite to this 'FREE LUNCH (or dinner)?' Just visit Mad Mex's Facebook page wall here:  Then follow their directions! I love scoring free food! Add one of MM's incredible margaritas ... ah!!!!!!!!!!!! Nirvana!

Never visited a Mad Mex before you say? Heresy!  Wondering How 'Mad' 'Mad Mex is?' Mad Mex is wildly insane! The decor alone will convince you of that! This place serves funky fresh Cal Mex with their signature Big Azz Margaritas that are to die for!  Anyone who ever visited one of Mad Mex's other locations knows just what I'm talking about! Mad Mex's burritos don't necessarily have traditional burrito fillings.  Oh no, Mad Mex you see is just a little....MAD! 

This month Mad Mex is mad about turkey, so they've got a Gobblerito for your delectation!  Now is a perfect time to sample their Gobblerito.  A Thanksgiving Burrito...filled with all the goodies that you usually don't get until Thanksgiving! For a limited time you can get one of these huge burritos stuffed with turkey, mashed potatoes, stuffing, corn and gravy! Not your usual burrito!  With a side of, what else? Cranberry sauce! Try it now, it's only available until the end of November. 

Now that Mad Mex is coming to Willow Grove if you live in suburban Philadelphia you no longer have to haul into 34th Street to their restaurant there. (I thank you, my car thanks you!) You can just drive down the street to enjoy Mex to the Max!

If you're wheelchair bound or have a tough time getting around the new location is perfect! No more fighting the parking in Center City Philadelphia! And if you're on a budget and usually can't afford to eat out this is a perfect time to try a new restaurant without breaking the bank.  I think you'll find Mad Mex is a great place to go out for dinner or lunch that WILL fit your budget. 

Just because you're living on a budget doesn't mean you can't enjoy a night out with family, friends or staff.  And this opening day/night is a perfect time to take some friends along and introduce them to the madness that is Mad Mex!

Come for lunch and you'll find me and my husband sampling all Mad Mex has to offer in their newest restaurant.   And enjoying our 'free lunch!' 

**The author will be compensated for writing about their opinion of Mad Mex by receiving the aforementioned 'free lunch/dinner'. All opinions are the authors' own and are an honest appraisal of the product or location or deal available.

Friday, November 4, 2011

Ability Night by The Arc

The Arc of Delaware County is having Ability Night.  They invite you to join them and their special guest speaker, Sara Wolff.  Sara is a skilled motivational speaker who speaks on behalf of people with Down Syndrome and other disabilities.  She promotes a better understanding of disability through her personal appearances and inspirational speeches. 

There will also be an election of the Board Members and Officers at this meeting.

Food will be provided.


November 15, 2011
DCIU Room 171
200 Yale Avenue
Morton PA 19070

Law, Disability and Independence

Have you taken steps to plan for the present and/or future if you have a child/young adult with a disability?

The Everyday Lives Committee is having a meeting on November 16, 2011 at 12-2pm on planning for your child's present and/or future.  The meeting will be held at the Delaware County Intermediate Unit, Education Service Center, 200 Yale Avenue, Morton PA 19070 Room 163. 

The meeting will cover:
  • Guardianship
  • Medical Power of Attorney
  • Special Needs Trusts

Dennis McAndrews Esq. of the McAndrews Law Offices P.C. of Berwyn PA will be presenting information that explains the differences of these legal steps and when it's beneficial to use each of them.  A question and answer session will be held following the presentation. 

Questions call:

Marsha Komara 610-713-2400 x2210

Tuesday, October 18, 2011

Working, The Great Equalizer

Have you ever wondered what it would be like to be partially blind or deaf and be looking for a job? Intellectually challenged or having any one of a number of other 'disabilities' that make you different from the usual job applicant? Unable to stand up to work, or unable to sit for long periods of time usually required for a desk job? This post is to give companies who promote diversity in their workplace and supportive work environments for the differently able a shout out and to say 'thank you, you are appreciated.'

As a parent of a disabled young adult, one of the most important things you can encourage them to do is to get a job.  Work is a great equalizer.  This isn't to say that your young adult is likely to become the CEO of a Fortune 500 company (few of us have that chance).  But work, even if it is part time, gives them a great feeling of being ABLE to do what other young adults their age are doing. 

Sometimes finding a job is tricky, some employers are more equal opportunity employers than others.  I'd like to give a shout out to three companies in the Philadelphia area that are well known for being willing to train young adults to be contributing members of their workforce than some others.

Top of the list is Wawa Inc.  For those who live in the PA/NJ/DE/MD/VA area you are already probably familiar with Wawa convenience stores and gas stations (where you can usually get the lowest gas prices around!)  Their corporate headquarters is located in Chester Heights, Pennsylvania, near the community of Wawa PA. 

Wawa offers young adults the opportunity to learn on the job and their managers are well known for being helpful to young workers who need a little bit of extra help.  Combine their friendly management attitude with their willingness to work with the local school districts on job placement while students are still in high school and you find a company I'm proud to patronize. 

At any given time you'll find young adults (and older ones) doing a variety of jobs that suit their abilities.  So the next time you're thinking 'where should I stop for coffee' on the way to work, stop in your local Wawa. Support their willingness to help all the members of their community be active participants in the workplace. 

Wawa in my neighborhood recently celebrated the 45th Anniversary of their store on Burmont Road in Drexel Hill PA.  Wawa's PR coordinator, Colleen Labik said "Wawa is like being part of a family.  Our customers can go anywhere for their cup of coffee but they choose to come here because of that special bond  between the store associates and the customers." 

I was talking to some of the customers who had come to help Wawa celebrate this special occasion.  One said "The managers come and go, but there's a young lady who is always here smiling and helping me out, she's the reason I come in every day."  He pointed to her across the store, imagine my pride when I saw he was pointing to my daughter. A true proud mom moment.  But she is only one of many employees Wawa has with varying skill levels and physical disabilities.

Another employer who trains students from the VoTech to recent grads from the Special Education program at the high school is Red Lobster.  Red Lobster, part of the Darden Restaurant chain, provides seafood dining experiences even for the landlocked!  Darden Restaurants have a long history of 'being of service,' and promotoing 'diversity,' and 'respect and caring in the communities where we live and work.' This is reflected in many ways but especially in their willingness to hire those with different levels of ability.

Darden also teams up with a number of non-profit organizations that have a track record of effectively serving and representing the members of the communities where they are located.  This includes organizations assisting the disabled.  Kudos to Red Lobster and all Darden Restaurants (which include The Olive Garden, Longhorn Steakhouse, Bahama Breeze,  Season 52 and Captial Grille) for recognizing and acting on this important concept. 

Darden also supports Habitat for Humanity through furniture donations to its ReStore outlets, the American Red Cross Annual Disaster Giving Program, and local food banks in communities across the United States through our Darden Harvest food donation program, many of which benefit the disabled.

ACME Markets Inc. is another company that offers employment opportunities to the differently able.  Acme began in 1891 with the opening of a small neighborhood market in South Philadelphia that emphasized quality foods, friendly service and low prices.  Samuel Robinson and Robert Crawford, opened a small neighborhood grocery store at Second and Fernon Streets in South Philadelphia, and more than 120 years later ACME has expanded and provides jobs for people in PA/NJ/DE/and MD.
Today, ACME operates 116 stores, employing more than 13,000 associates. In addition to providing the community with a convenient and reliable place to shop, most days you walk into an ACME you'll find employees with a variety of abilities working to make ACME you choice of a place to shop.  The bagger who is partially blind, the disabled cashier, the stock person who needs a little extra help, all have a place in the ACME family.

Do you know a company that is actively helping the differently able become part of the work force?  Leave me a comment or send me an email.  We're planning on doing 'shout outs' highlighting companies that are 'differently able friendly' and their employees.

Wednesday, October 12, 2011

Ticket To Work Meeting

Regretfully the Ticket to Work portion of this presentation has been cancelled. 

The Everyday Lives Committee is having an informational program about the Ticket to Work on October 19, 2011 from 12 noon to 2pm. 

The informational session, Ticket to Work, Work Incentives, Planning and Assistance (WIPA) would be useful for caregivers, the disabled or anyone involved in services for the disabled.  Learn how many Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) beneficiaries can stay in control of their benefits while enriching their lives through employment. 

Speakers at this session will be: Tyra Virden, Community Work Planning & Assistance (WIPA), Disability Rights Network and Joseph Gousie, Director of Non-Traditional Career Supports and Training, Elwyn/Work Services Division.

For addiitonal information contact:  Marsha Komara 610-713-2400 x 2210  The meeting will be held at: The Delaware County Intermediate Unit, 200 Yale Avenue, Room 163, Morton PA 19070. 

Saturday, October 8, 2011

Disability in the Workplace Survey

Cornell University is conducting a survey about how people who are disabled feel about disclosing their disability to potential employers and how they are treated after they are hired.  To take their survey go to this survey link.

This is from their web site:


The American Association of People with Disabilities (AAPD) and the Employment & Disability Institute at Cornell University* invite you to participate in a brief (5-10 minute) survey on emerging employment issues for people with disabilities. This research will provide a foundation for policy development around:

  • Disability disclosure in the workplace
  • Leave as a reasonable accommodation
  • Job applicant screening criteria that may differentially impact people with disabilities in the hiring process.

By completing this survey you are agreeing to participate in the research. You are not likely to have any direct benefit from being in this research study. Your participation is voluntary and there is no penalty if you choose not to participate.

Your responses will be kept strictly confidential, and digital data will be stored in secure computer files. Reports based on this survey will not include any individually identifiable information.

We anticipate that participation in this survey presents no greater risk than everyday use of the Internet, however electronic communications are not necessarily secure and could be viewed by a third party." 

Do you feel like you had to hide your disability to get hired?  Do you think your disability has an impact on your ability to be hired or promoted? Tell it like it is.  If you're not actively working toward change you could be part of the problem.  Take action today to make changes for the better.

A Book To Read

The “Tail” of Rugby Jones is a book for anyone facing a challenge in their life.

What is The "Tail" of Rugby Jones? When an uncommon dog has a determined owner, and they share the belief in possibility, anything is possible.

The "Tail" of Rugby Jones is the story of a dog who had it all.  He lived on a horse farm in Pennsylvania.  He was the 'top dog' who kept all the other dogs and cats in line.  He helped his owner with the horses.  Yes, Rugby Jones lived like a Top Dog.  Then one day another dog attacked him and Rugby Jones was paralyzed, his lower back a disaster area.  His owner was advised to put him out of his misery.  She refused.  She knew Rugby Jones had the courage and the strength of will to overcome the obstacles in his path.  Claudia just knew she and Rugby would find a way to get Rugby Jones walking again. 

The book is written in Rugby's cocky six year old voice.  The story is one whose message will resonate with adults and children alike. What does this book reinforce?

- hope in a hopeless circumstance
- courage to be different in a “let’s be alike” world
- determination to take the “dis” out of disability
- unexpected trust that comes from unconditional love

Rugby teaches us all that life is what we make it.  It's about what you can do, not about disability.  He shows readers by example how to live life to the fullest and never give up.  A great message.  A great book.  Available on or your local bookstore.

Tuesday, October 4, 2011

Autism Research Law Signed by Obama

On September 30th President Obama signed the Autism Law that provides millions of dollars for autism research.  This will support autism research for the next three years.  The law called the Combating Autism Reauthorization Act of 2011 provides over $230 million to support autism related research.  This preserves the spending levels of the original 2006 law that was about to expire.

According to supporters this will support research that builds on prior autism-related research that includes improved screening methods and identifying autism susceptibility genes.  Prior to 2006 the government devoted far less spending to autism research.

According to statistics 1 in 110 American children have a disorder on the autism spectrum.  Organizations supporting the law include: the American Academy of Pediatrics, the National Association of State Directors of Special Education, the Autism Society, and Autism Speaks.  The Autistic Self Advocacy Network and other groups opposed it because of it's focus almost solely on children with only a small amount of resources designated for helping other individuals diagnosed with autism.

Sunday, October 2, 2011

Work and the Disabled -- They Become the Work-Able

(video from Daily Local News)

Project SEARCH, a program that teaches job skills to the disabled and also helps them get jobs, run in cooperation with Bryn Mawr Rehab Hospital, has graduated their first class this year.  Project Search is a countrywide program but Bryn Mawr Rehab is one of only two locations to offer the program for adults.

Project SEARCH at Bryn Mawr Rehab is currently underwritten mostly by philanthropic donations but it's success should attract aid from other funding sources.  Currently they receive funding from the American Recovery and Reinvestment Act, or ARRA.

The graduates from Project Search at Bryn Mawr Rehabilitation not only have skills they often have JOBS!  Think what your life would be without the satisfaction your job brings to you.  Project SEARCH is teaching people to reach out and help themselves. It's making them ABLE. 

One of the biggest difficulties for the disabled is finding a full time job in the community they live in.  If they can be successfully integrated into the communities they live in they become not only happier and have a personal feeling of success but they may need fewer services that are underwritten by the state and federal government.  I'd rather see my tax dollars at work training people to WORK, than paying them to stay home. 

Interns may train for a variety of positions ranging from patient services, clerical positions, food service, environmental services, materials management, information services, support services and others.  Any classroom education takes place at Bryn Mawr Rehab, while the three internships they take part in may take place at Bryn Mawr Rehab or other Main Line Health locations. 

Students interested in this program should contact Bryn Mawr Rehab or their local office of Vocational Rehabilitation.  Applications previously were accepted in April so get a head start and make inquiries now to see if this program would help you.

Wednesday, September 28, 2011

Autism Workshop

The Center for Autism Research and the Regional Autism Center at The Children’s Hospital of Philadelphia invite you to
Next Steps Workshop for Professionals
A workshop for professionals supporting young children newly diagnosed with an autism spectrum disorder
  • Topics include an overview of autism spectrum disorders (ASD) and accompanying conditions, how diagnoses are made, available therapies and treatments and how to decide what interventions to pursue, and tips for supporting families living with ASD
  • Presenters will include fellows in developmental and behavioral pediatrics, speech and language therapy, occupational therapy, social work, and researchers from the Center for Autism Research*
  • Participate in a discussion with a panel of parents who have made the next steps with their children
*Drs. Sarah Paterson and Gregor Kohls from the Center for Autism Research will present. Dr. Paterson is a developmental psychologist whose study investigates brain and cognitive development in the infant siblings of children with ASD. Her study hopes to pinpoint when early signs of ASD first emerge. Dr. Kohls is a psychologist whose research focuses on exploring social motivation and rewards. He currently runs the FaceStation video game intervention study and the Oxytocin treatment trial.

$45.00 per person includes Resource Binder and Continental Breakfast
$75.00 per person includes Resource Binder, Continental Breakfast, and Continuing Education Credits*

* Act 48, nursing, psychology, and social work
In order to keep costs low, lunch with NOT be provided. We ask that all participants pack and bring their lunch. Alternately, a light assortment of soups, sandwhiches, and salads are available for purchase in the 16th floor cafeteria, and there are several lunch carts in front of the 3535 building.

Price does not include parking. For directions and parking options, please visit:
Please RSVP byNovember 22nd
To Register Online, please click the blue Register Now button below.
To register by mail, please print and mail in the form on back, along with your check ($45.00 or $75.00) or money order. Checks may be made out to "The Children's Hospital of Philadelphia" with "Center for Autism Research" in the memo line.

ASD Conference For Parents of Young Adults

Elwyn and ASCEND, The Asperger & Autism Alliance, present a conference, Pathways to Independence For Young Adults with ASD.  The conference is for individuals/families with an autism spectrum disorder transitioning to adulthood or for professionals working in the field. 

Information on post secondary education options and how to evaluate them, optimizing the transition from school to employment, and practical strategies to improve organization, time management, meta cognition, self regulation, and other executive functioning skills will be presented. 

The keynote speaker at the Pathways to Independence for Young Adults with ASD will be Dr. Stephen Shore.  Also presenting is a panel of young adults transitioning into the work force, as well as a panel of representatives from post-secondary educational institutions.

This conference will be held on November 11, 2011.  Registration will begin at 8 a.m the day of the conference or you can register here online

Conference Times: 8:30 am to 4:00 pm
Held at White Manor Country Club
831 Providence Road
Malvern PA 19344

Cost: $65 w/out Continuing Education Credits
          $85 with Continuing Education Credits

The ASCEND Group is offering partial need-based scholarships on a limited basis.  One scholarship per family.  The cost for scholarship recipients is $15 for individuals with ASD or family members and $35 for educators. Download scholarship application here.

Sunday, September 25, 2011

Learning to Take The Bus

Learning to take the bus or other public transit helps all of us, even those with disabilities, access their community and the surrounding ones.  Use mass transit to go to work, go shopping, or visit friends. If you're uncertain about which bus will take you where you want to go most transit systems have someone to help you master it.  Call them to find out about travel training classes or for help determining how to get to your destination.  Schedules are available at transit hubs and other public areas.  This video is courtesy of AARP but applies to anyone who needs to get around. Even those of us who have managed to get to the ripe old age of 58 without riding the bus more than a few times. So if you're disabled, trying to cut back your carbon footprint, or just trying to make your car last longer the AARP has provided this video to help you out.

Saturday, September 24, 2011

What is Zero Tolerance? Does Your School or Community REALLY Have a Zero Tolerance Policy?

"Real zero tolerance is no concealment or silence."  This is a sentence that high school student Ellsworth Evarts IV (who has  Asperger's Syndrome) put on the back of a T-shirt. The front said "Stop bullying now. Stand up, Speak out!" Below the period of the exclamation point are red dots dripping down the T-shirt.  Ells, the T-shirt's designer and a victim of bullying in school said "The bleeding doesn't stop, even after the bullying ends."  As I read this part of the article about bullying and Asperger's, ("Aspberger's Leaves Kids Vulnerable To Bullying"  by Vinti Singh, published in the Greenwich Times September 17, 2011 issue) my heart broke for Ells and the other children profiled in the story.

Obviously these children are only the tip of the iceberg--children with disabilities are often harassed. It doesn't necessarily end with high school graduation.  They are harassed not only by 'regular ed' students but by 'more powerful' special education students. Because some students lack the verbal skills to respond the problem often escalates.

Our family found out first hand what a zero tolerance policy really meant in our school district when one of our daughters was sexually assaulted.  It meant in our district the school district would suspend a boy for a few days, but they would NOT call the police even though a crime had been committed on school property.  Selling or carrying drugs--zero tolerance, fighting, zero tolerance, but sexual assault, not such a big deal.  Something is wrong with this picture. Obviously we haven't 'come a long way baby,' especially if you happen to be disabled and female.

As we sat in the Principal's office he had the nerve to say 'Boys will be boys.'  Right to our face. I'm rarely at a loss for words.  In fact, anyone who knows me would tell you I am never at a loss for words. But there's a first time for everything and that was mine. I sat there staring at the the photos on the Principal's desk showing his son playing baseball and wondered if he'd had a daughter would his reaction have been different? Was his reaction a result of his own parenting fears? Or was he just indifferent? Lacking empathy? His reaction puzzles me to this day.

At first I thought it was just a problem with the principal.  It wasn't.  We went all the way up the chain of command in the school district--they refused to call the police and involve the school, my daughter, my husband and I did. Fortunately the police department and the District Attorney DID have a zero tolerance policy.

The young man was convicted in court. It was only later we found out his family was well known to the police in the area as 'problems'.  Oddly enough one of the Principal's reasons for not reacting differently was something along the lines of what an "exemplary student this boy was, what a good boy, it must have just been a misunderstanding." No way! Unfortunately, that fall day their family issues and problems spilled out and over into my family.  And his problems became part of ours. 

Our daughter made the hard decision to go to the police and to court.  It was not easy for her.  Either before or after. But she said, 'If I don't do something, who will?' My eyes teared up with pride and fear for her.  But to her credit she wanted to be sure he got counseling so it didn't happen again to someone else. That day she made me proud to be her mother.

Was this decision easier because she saw things in 'black and white, without gray areas?' I don't know.  I know I worried she would regret it, but all I could do was support her decision.  One of the hardest things to do when you have a child with disabilities is let them learn by experience instead of telling them what to do.  This tested my limits.  I wanted to hold her, protect her, keep her at home and home school her--but I didn't.  I supported her and yes, gave her those hugs, but I had to let her choose which path to take.  Was I right? Wrong? She did what she thought was right for her.  I couldn't take that power away from her. She went back to school, faced her schoolmates, and dealt with the fallout.

It was at that point in her life that my daughter became one of my heroes.  Young, in middle school, assaulted and yet still willing to put herself out there.  And not for vengeance.  But to be sure no one else got hurt and so that the perpetrator would get counseling. I don't know if I would have been as brave (or forgiving) if it had happened to me at her age. 

I also have to give credit to her friends who she told about the incident first--who encouraged her to tell us and the school.  They were REAL friends.  If you guys are reading this, you know who you are, thank you.  (Yeah, I know I thanked you before, but...once is never enough for something like this).

To be fair, one guidance counselor at the school was helpful to her and the Head of Special Education helped us navigate the Administration. But still no one considered it a police matter.  How sad that those in charge lacked the conviction to do what was right.  Sad they didn't REALLY have a zero tolerance policy against someone breaking the law on school property. And sad that once again the victim was victimized by those in charge. Victimized by the very people you trust your child to each day when they go to school.  Scary that you still have to send that child back to school and trust them.

So the next time you're at a PTA/PTO meeting and there is a discussion about zero tolerance, find out just who is REALLY protected by zero tolerance. You may be surprised to find that zero is only zero when it's easy and convenient for the school district.  And this isn't just a Special Education issue, it effects all students in the school.  Special education students are just often less able to defend themselves.  Kudos to those mentioned in The Greenwich Times article and to the author who presented the issue.

Read the full article in The Greenwich Times at:

Friday, September 23, 2011

St. Coletta of Greater Washington DC Area Holding Fundraiser

Always happy to promote organizations who are holding fundraisers, not only can you donate if you have something to auction, if you're looking for a program it gives you ideas of where to look.  Sounds like this is going to be a blast!

Wednesday, September 21, 2011

Drug Study For Fragile X Syndrome.

Are you an adolescent, adult or do you have a child with Fragile X Syndrome? Would you like to join the Researchers at Suburban Research Associates who are currently accepting participants for a study of an investigational drug in children, adolescents, and adults with Fragile X Syndrome.

During this 18-week research study of children and adults diagnosed with Fragile X Syndrome, all participants will receive either active medication or placebo (sugar) pills. 

Eligibility Requirements for Fragile X Syndrome Drug Study:

To be eligible for this study, participants must:
• Be between the ages of 12 and 25 years
• Have Fragile X Syndrome
• Not have any other significant medical conditions (e.g. heart disease, high blood pressure, lung disease, liver or kidney failure, unstable seizure disorder, thyroid disease)

To see if you are eligible for this study visit Suburban Research and fill in their questionnaire.  Also take the time to investigate Suburban Research. 

(I have no connection with anyone involved in this study, I am only offering the information so you can make your own decisions if you would be interested in taking part in it.)

Monday, September 5, 2011

Dial for Dollars--Welfare etc. Helpful Phone Numbers (For Pennsylvania Residents)

As a resident of Pennsylvania I thought I'd provide my readers with some important phone numbers that can assist you if you are disabled or are a caregiver of a child/or adult who is.  Phone numbers courtesy of the state of Pennsylvania DPW link.  If you live in a different state, check your state web site for a list of helpful numbers. 

Service Phone Number
Autism Services 1-866-539-7689
Benefits Helpline (Cash Assistance, SNAP, MA etc.) 1-800-692-7462
ChildLine (State Child Abuse Registry) 1-800-932-0313
Children's Health Helpline 1-800-986-KIDS
Disability Services 1-866-286-3636
Governor's Office 1-717-787-2500
Estate Recovery Program 1-800-528-3708
Personnel Information 1-717-787-5025
Secretary of Public Welfare 1-717-787-2600
Welfare Fraud TipLine 1-800-932-0582

One thing I'd like to remind all families of is it's always worth checking to see if you are eligible for programs you never thought you would be.  Many years after my children were young we found out we'd have been eligible for assistance when they were younger--we just didn't know it, so struggled along.  Being too proud to ask for assistance, or simply not knowing about eligibility, especially when your children need it, makes no sense (and no cents!).  I just wish I'd known!

Tuesday, August 9, 2011

Webcast RE: Autism

I was asked to post this for any of my readers who might be interested.  If you have a member of your family or know someone who suffers from autism? This webcast might be of interest to you.  It's based on the state of Pennsylvania but the results might be of interest nationwide.  Hope it's helpful!

Topic: Bureau of Autism Services (BAS) General Initiatives Overview
Presented by Nina Wall-Coté, BAS Director

1:00 pm – 2:30 pm

Tuesday, August 30, 2011  OR

Wednesday, August 24, 201110:00 am – 11:30 am
The same information will be presented in two separate sessions. This presentation will also be recorded and posted to the BAS Virtual Training & Resource Center. We hope this will enable professionals and families some flexibility in joining us.

Pre-registration is not required. To join the presentation:

1. Visit
2. Sign in as a Guest using your first name, association.

Webcast Overview:

The Bureau of Autism Services, DPW, in collaboration with the regional ASERTs, is about to publish a series of reports highlighting findings and recommendations resulting from the PA Autism Needs Assessment. This
survey, the most comprehensive study of its kind, reflects feedback shared by over 3,500 families and individuals with autism in the Commonwealth.

Report topics include: Statewide Summary, Service Needs, Barriers to Accessing Services, Unwanted Outcomes, Diagnosis, Employment Challenges, and Family Impact.

To learn more about this project and other BAS current initiatives, including Pennsylvania’s two adult autism programs and training resources, we encourage you to join the Bureau during an upcoming webcast: 8/24/2011, 1:00-2:30pm or 8/30/2011, 10:00-11:30am. Please visit (Updates: Presentations & Newsletters section) for more details.

Any questions about the webcast should be directed to --

Bureau of Autism Services, Office of Developmental Programs
Department of Public Welfare
Room 601 Health & Welfare Bldg. | Hbg., PA 17120
Phone: 1.866.539.7689|Fax: 717.265.7761

Ticket To Work Webinar--Register NOW!

National Work Incentives Seminar Event (WISE) webinar is coming up August 24, 2011.  This webinar will be on using Ticket to Work for young adults in transition.  Social Security offers a program called "Ticket to Work."  Ticket To Work is a program for adults with a disability who want to continue to get their Social Security benefits while they transition to greater financial independence.  Social Security's Ticket to Work provides the employment support you need to succeed in a job without losing your benefits.

Unfortunately many consumers worry about taking part in it because they don't want to lose their benefits and face it, reading those little brochures the government prints out just isn't quite enough info so people tend to avoid using the service.  After going through the incredible hassle of finally being approved for benefits many consumers are worried about risking their benefits by using Ticket to Work.  Hopefully this webinar will address some of the issues you're concerned about.  It will present information about special rules that may apply to you due to your medical condition/s.  They'll teach you about what the Ticket to Work incentives are, where to get more information, and present success stories of people who used their Ticket to Work.  So sign up to take part now. 

Register online or call 866-968-7842 or 866-833-2967 (TTY).  If you can't make this webinar, there are some prior ones archived online that might be of interest to you.

Wednesday, August 3, 2011

All Moms Deserve Time To Unwind

Are you a mom of a special needs child? Grown Thru Play is having a night out just for you! 

What is Grow Thru Play? Grow Thru Play is a pediatric therapy practice which focuses on play as a child’s main occupation. According to their web site they "provide occupational therapy, physical therapy, group classes, and educational seminars."  They also "offer comprehensive evaluation and use current research to guide individual and group treatment plans. Grow Thru Play, LLC is a place where children of all abilities can play, learn, and grow."

One reason I'm focusing on Grow Thru Play is because they not only offer creative therapy that you can read about on their web site but they also are having "A Special Moms' Night Out."  While I'll focus on the importance of Early Intervention for children in a later post, the importance of a network for moms (or for dads) is of nearly equal importance.  There is a certain isolation many moms with 'special needs' children go through that a night like this addresses and makes a huge difference in a woman's ability to provide quality parenting.  Face it, being part of a group and having other women to talk to who are going through similar experiences is invaluable.  I wish I'd found this sooner since the event is on August 4th.  Hopefully some of you will be able to make it and it won't be the only event like this they have for parents.  Don't forget to RSVP!

”A Special Moms’ Night Out”
When: Thursday, August 4th from 7:30pm-9:30pm
Why: All Moms deserve time to unwind!!
How: Come drink, eat and engage in decorative card making
while meeting other Moms who have children with Special Needs
Cost: $10/person
RSVP: 215-545-0320 or

Visit Grow Thru Play, LLC at
Contact Us at (215)-545-0320
Our Location is:
1636 South Street
Philadelphia, PA 19146

Tuesday, July 26, 2011

Support Companies That Hire the Disabled

Photo courtesy of Paige Wolf Media and Public Relations

As parents of children with disabilities I liked to support companies that are known to be proactive about providing job opportunities for the disabled.  One company that we'd like to highlight is Noblo.  This company based in Eatontown NJ was founded after the owners saw a terrible accident involving a beach umbrella.  These moms developed a simple but effective way to anchor your beach umbrella giving them sun protection for their children without the worry of the umbrella blowing away. 

Noblo retails for a very reasonable $14.99 and is packaged by CVR, a local non-profit that hires the mentally and physically handicapped.  It's easy to use and was invented by moms who know the difficulty of navigating a day at the beach with small children! For each bag sold $.05 is donated to the United States Lifesaving Association.  This product is a win-win all the way around! 

The Noblo is available in pretty beach colors of yellow, pink, turquoise, blue (shown above), black and bright green--one of which is sure to match or coordinate with your beach umbrella. 

Friday, July 15, 2011

Changing the World--One Parent and Child At A Time

I admit, sometimes I just need a reminder that YES I CAN!  And not only that, YES MY DAUGHTERS CAN!  There are those days when you wonder if you or they will ever prevail and if things will EVER work out! This is especially true of parents of special needs children or young adults and of your children as well.  So I'm posting something that keeps me keeping on as they say. 

“Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.”
Margaret Mead
So when you're feeling like a small cog trying to make huge changes in a world of giant machines--this is a good quote to keep posted near your computer or on your frig.  I know changes can be made, one small change at time. 

Wednesday, July 13, 2011

Shopping For Furniture--Kudos to Raymour and Flannigan! And Some Other Furniture Shopping Options

Our daughter needed a new couch for her apartment and last weekend made a trip to Raymour and Flannigan in Springfield PA. The salesman, Joe, was great! He helped her make an informed decision while not going over her budget. It would have been easy for him to talk her into overspending--unfortunately this is a real problem when shopping for higher ticket items. But Joe showed her items that fit her budget and really HELPED her. So kudos to the folks at Raymour and Flannigan and a salesman named Joe, who really took the time to CARE. Kate has had her own apartment for several years now and has made do with family hand-me-downs and has just now had enough money to buy a nice sofa. It was an exciting day for her and the joy on her face when she purchased not only a couch but a coffee table too was great! I'll post photos of her new furniture as soon as it's delivered.  This photo is from the Raymour and Flannigan web site.  Wow is it comfortable!

When your son or daughter first moves out they can shop for furniture on Craig's List (with supervision) or at your local Goodwill or Thrift Store.  My mom's retirement community has a store where residents consign items they no longer use or need, another possible option.  Also try garage sales or tag sales, just beware, some tag sales are very high priced!  Another option for anyone in the Delaware Valley is Janice Buck's web site.  Janice does home stagings and resells furniture when she no longer has a use for it, most of it is in perfect condition.  She'll send you email updates if you sign up on her web site, head to her web site Janice Buck Design,  and sign up for updates.  She also has information about companies that can deliver items from her business.

So no matter how much (or little) money you have to spend, there's always somewhere to find furniture to make your son or daughter's home a nest away from your nest.  Just remember, it's THEIR apartment--it's hard to keep from wanting to do it for them--but it is theirs not ours.  (Yes I'm guilty of wanting to over do it! Keeping my mouth shut is REALLY hard) But letting her make her own choices gives her pride in her apartment, which in the long run is what we all want for our sons or daughters.

Monday, June 13, 2011

Hope For Asperger's -- A Real Life Story

This video is from a web site about Taylor Morris' experience with Autism and Aspergers Syndrome, Meet Taylor Morris. At age 2, Taylor was diagnosed as being on the Autism spectrum and given little hope of having a happy, independent life. Now, at age 17, she is a top student, an athlete, and a creative artist. She offers advice to parents and other people with autism.

Sunday, June 5, 2011

Blog Recommendation

Every parent should visit the blog Child Talk and read the concerns about early childhood.  Child Talk is described as "Everything you wanted to know about your child's speech and language...from the perspective of a pediatric speech-language therapist."  The blog offers parents and teachers info on autism and the changing face of early intervention and a host of other communication related posts.  Well worth stopping by.

Saturday, June 4, 2011

Monster Trucks are Rocking and Rolling at the Linc!

Monster Truck Jam at The Linc in Phlly is underway
Thanks to the great ticket giveaway from CKPcreative and their clients Advance Auto Parts Monster Jam, bloggers and families won tickets to Monster Truck Jam in Philly and they are enjoying a night Jammin'! More to follow!
Monsters lined up and ready to roll!
Wow look at those huge tires! Those are some huge trucks! Now I know just why they are called Monster Trucks--they are way bigger in person than on TV!
Glad I'm not driving those trucks! Talk about crash and burn!
Getting ready to take them on!
Hold Toledo! That's high!
Wow am I glad I don't have to clean up after this!

Sunday, May 22, 2011

Help With Budgeting

There is a spreadsheet for every person and templates make them easy for every user.  This link shows you a variety of spreadsheets and you can decide which one best fits your needs.  Some report income biweekly, some monthly, some weekly.  The web site Christian Personal Finance offers all sorts of ways to help you manage your money, so no matter what your needs there is something for everyone! Head on over and see what's available.