Special Needs Neighborhood.com Blog

Raising a child with special needs is expensive.  Therapies, doctors, interventions, schools, child care and so on are costly.  Some moms of children with special needs are finding that starting their own home businesses provides more income that they seek and, is a way for them to care for a child with special needs.

 Are you a mom of a child with special needs who is operating a business from home and feel that you need more support?  Maybe you’re thinking about a business, but want to connect with other busy moms.  If so, then you may consider joining a support network such as Special Mompreneurs.  Special Mompreneurs is a network of moms who own and operate businesses while staying home to care for a child with special needs.  At Special Mompreneurs, you find business-related reference materials, free marketing webinars, discussion forums and more.

 Marla Murasko created Special Mompreneurs because she wanted to inspire and to support mom entrepreneurs.  Marla understands juggling a business while caring for a child with special needs.  Her son, Jacob, has a congenital heart defect.  Marla operates a Virtual Assistant business that includes executive administrative support, office management, desktop publishing, project management and personal concierge services.

 You can find Special Mompreneurs listed as a new resource on Special Needs Neighborhood.com under support groups.  It’s one place for business-minded moms of children with special needs to connect.  What other resources do you like for mom entrepreneurs?

Are you staying close to home over Memorial Day Weekend?

 Your decision to travel with your child with special needs may involve considerations other than cost, such as accommodations, changes to routine and dietary needs.  The hospitality industry is responding to invitations from businesses that serve the disabled community for changes to standard operating procedure.  This industry is listening and on-board with making vacations possible for families of children with special needs.

 The Wyndam Garden Hotel, located in S. Austin, TX, is a place where families of children with special needs can relax and parents can enjoy a break.  According to Anna Roberts, Guest Relations manager, the hotel developed an interest in providing comfort to families of children with special needs who are traveling when a local business that serves kids affected with autism approached the hotel about arrangements for its clientele; the idea of partnering with the provider was a natural one.  “Hospitality is our job,” said Ms. Roberts.   

In preparing for travelers with special needs, the hotel modified its space and expanded its menu.  Adaptations include:

 *Door alarms, chime style, sound when door is opened.  Alarms are optional and can be switched off manually.
*Corner Guard Cushions on tables
* Childproof drawer latches on at least the bottom two drawers.
*Shortened strings on blinds.

*Outlet covers on all electrical outlets.
* Childproof door knob covers on the outsides of bathroom doors.
* Small refrigerator in rooms.
*All desktop and counter top items are cleared and placed at a higher location.
*Additional “u-bolt” style lock on door at higher location than original u-bolt.
*Television and phone in room secured to the tabletop by their cords to prevent tipping.
*Bathrooms, counter and tabletops cleaned with TH approved products and carpets cleaning donated by organic dry cleaning service.
*Toys and books, as well as, welcome baskets containing snacks, drinks and soap.

*Rooms are without balconies and far from elevators.
*Gluten-free/Casein-free menu options.

 Also, hotel staff received training on behavior issues that may arise, how to handle requests for adaptations and contact lists of local resources if emergencies occur.  In addition, the Wyndam Garden Hotel proposed to offer year-round promotional rates to families of children with special needs.  For information about promotional rates and other services, contact Anna Roberts via email or, call her at: 512-744-4830.

 What hospitality resources have you found?  Add your vacation resources on Special Needs Neighborhood.com under Promotions and Travel.

How can renewing your car’s registration benefit kids affected with Autism and its related disabilities?  Autism advocates have found a way to channel funds raised through this annual rite towards Autism awareness.  They are succeeding with legislative efforts to create specialty license plates nationwide.  Money raised is used for autism-related programs.

For example, a Florida resident replacing his current license plate at registration time or anytime with a specialty one that reads, “4ATSM”, supports Florida autism programs for children and adults and, provides partial funding for ARCBroward, a Florida non-profit.  Autism advocates and the Center for Autism Related Disorders (“CARD”) lobbied the 2009 Florida Legislature for The Autism Services Grants Council and The Autism License Plate Fund.  According to its web site, The Autism Services Grants Council implements and oversees “a grants process for the distribution of funds generated from the sales of the Florida Support Autism Programs Specialty License Plate.”  “4ATSM” plates cost $25.00 annually.  They are sold at local, county and private vehicle plate renewal offices around Florida.

Here’s a list by state regarding Autism License Plate funds/efforts:

Colorado: http://www.autismboulder.org/announcements.html#license

Florida: http://www.autismlicenseplate.com

Illinois: http://www.autismillinois.org/autismawarenesslicenseplates.aspx

Indiana:  http://www.autism-society.org/indiana_chapter

Kentucky: http://www.kyautismawareness.com

Maine: http://www.exceptionmag.com/features/maine-focus/000407/autism-license-plate-maine

Missouri: http://www.joplinindependent.com/display_article.php/cwilson1213870513

North Carolina: http://www.autismsociety-nc.org

Ohio: http://www.asgc.org/licenseplate.htm

Oklahoma: http://www.okautism.org

Utah: http://www.examiner.com/x-4167-Salt-Lake-City-Special-Needs-Kids-Examiner~y2010m2d23-Autism-Legislation-Moves-Forward-Including-Autism-Awareness-License-Plate

Please update this list and add your state’s status to our comments.

Editor’s Note:  Autism is a developmental disability defined by a set of behaviors.  Autism is prevalent among boys, affecting 1 in 70, according to a 2009 Centers for Disease Control report.

Spring is nature’s party time, but it’s filled with hazards for children with special needs.  When playing outdoors with your child, watch out for poison, parasites and pollen. 

First, your yard is filled with plants.  Do your research and know how poison ivy and poison oak look.  Teach your child how to identify these plants from others.  Wash clothes thoroughly following outside play.  The plants’ oils stick to clothes and can expose others to the poison.  Your child will develop an itchy rash if she’s made contact with one of these poisonous plants. The initial rash is contagious. 

Second, sneaky and disgusting parasites such as ticks thrive this time of year. Ticks transmit diseases like Rocky Mountain spotted fever and Lyme disease and, can cause paralysis.  Inspect your child after outdoors play.  Look over clothing and search belly buttons.  If you find a tick on your child, a way to remove it is to grab it as close to the skin as possible and pull.  When you hear a pop such as a suction cup releasing, the tick is loose.  Flush it down the toilet. 

Finally, flowers produce pollen that brings about seasonal allergies.  Your child may experience sniffing, wheezing or, watery eyes.  Stay informed about pollen counts in your neighborhood.  When pollen is high, manage your child’s exposure with less outside time.

With planning, your children can enjoy the season and you can avoid visits to the doctor’s office.  How do you safeguard your children outdoors?  Share your comments. 

Have you heard about H.R. 4247 also known as Keeping Students Safe Act?

The U.S. House of Representatives passed The Keeping Students Safe Act on March 3, 2010. This legislation addresses physical restraint and exclusion standards in schools.  Under the proposed law, elementary and secondary schools are prohibited from using mechanical restraints, chemical restraints, or physical restraints that compromise a student’s breathing or compromises a student’s health and safety.  Imminent danger for the student or harm to others are required circumstances before school personnel can justifiably use physical restraint or seclusion.  When physical restraints or seclusion is used, school personnel must monitor the student and keep direct visual contact with the student during the restraint or seclusion period.  The legislation outlines more training for school personnel in first aid and state-approved crisis prevention.

Lawmakers also propose that school personnel cannot make written recommendations for restraints and seclusion as planned interventions in Individual Education Programs (IEPs), behavior intervention plans (BIPs), Individual Safety Plans and, student’s education plans.  Also, the pending law considers parent notice issues.  The legislation requires schools to give parents timely notice about restraint or seclusion used with their child.

In 2007, Autism Advocate published an article about school discipline for students with Autism Spectrum Disorder (“ASD”).  This article explored how positive behavior interventions such as reward reinforcements for appropriate behavior eliminate problem behaviors for most students.  In fact, the authors explained that research showed “that if teachers and other school personnel have the knowledge and expertise to provide appropriate positive behavioral supports and interventions at all levels in the school, behavior problems can be greatly diminished for all students, including those with ASD.”

 What do you think about the proposed law?  Do positive behavior interventions work with your child?  Leave your comments here.

Today is Earth Day!  What activities will you do with your child with special needs to observe today?  Here are a few suggestions:

1.  Prepare a “Green” meal together – I love this idea especially since my daughter gave it to me.  As we were making her school lunch she suggested that we make a salad.  I was thrilled! 

2.  Organize a community cleanup – Choose a site that needs clean-up.  Make signs about your up-coming clean-up and post them around your community.  Host a meeting to assign tasks to volunteers.  Meet at the chosen location this weekend.  Bring plenty of water and snacks for everyone to enjoy.

3.  Walk or bike somewhere today – This activity addresses environment, wellness and promotes language skills.

How are you spending Earth Day with your child with special needs?  Leave your comments here.

Reprinted with Permission

Thirteen year old Alex Fitzgerald of Woodbine, MD was not born disabled. However at 15 months of age, he began to mysteriously undergo a series of neurological deterioration that has left him deaf, blind, and unable to walk or use his hands effectively. Doctors are baffled by the mysterious illness that, so far, has only been identified in one other child. At this time, there is no treatment or cure for Alex and future deterioration is uncertain.

Despite a normal IQ and participation in the general curriculum, it is unlikely that Alex will ever be able to live independently, due to his severe sensory and physical impairments. As he grows older, it has also become increasingly difficult for his parents, Steve and Lauren, to care for him without any help. So when the family was approached by T-Mobile to lease a portion of their 10-acre property for a cellular antenna, they jumped on the opportunity, hoping to put the money into a fund for Alex’s future care and provide some immediate relief for things like respite care and modifications to their home. “Alex is the most courageous, friendly, enthusiastic child I’ve ever seen,” said his mother. “I refuse to let him end up in a nursing home or some other facility. He has a bright future ahead of him, but will need a lot of assistance to live on his own. We worry about what will happen to Alex when we are gone or can no longer physically care for him ourselves.” Alex’s Castle, as they have come to refer to it, would provide a source of financial support for him well into his adulthood.

The moment word of the antenna made it to the neighbors; the community immediately began rallying against it. It became clear that aesthetic concerns over what is supposed to be a stealth pole that will be completely hidden by trees, was more important than the quality of life of a neighborhood child. Parents of his peers have gone so far as to circulate a petition in his middle school last week, in an attempt to stop the project. It was unclear if the school had knowledge of or had given permission for such a petition to be distributed during a school-sponsored event. “The unfortunate part,” said Mrs. Fitzgerald, “is that people did this without first reaching out to me to find out about us and our family. They’ve just gone on a rampage with no information to back it up. It’s reckless and sad.”

Spearheading this protest is the Concerned Citizens of Western Howard County, a group of individuals who routinely oppose any new development on the western side of the county. Ironically, at least two of the members of the group are closely involved with the Maryland School for the Blind, a bit of hypocrisy that hasn’t gone unnoticed by his parents. “It’s sad that we live in a community where people are only willing to make sacrifices on behalf of others when it is convenient for them or furthers their own agenda.” Meanwhile, the Fitzgeralds have been told that if the pole does not go onto their property, it will likely go to one of their neighboring properties.

Having lived in their home for sixteen years, the family has made many friends, all of whom are in support of them and the project.

“It’s the folks around here who don’t know us who are trying to hurt us,” stated Fitzgerald. “This pole will barely be visible, or at most, look like a skinny tree trunk. I guess in their minds, the hardship of having to look at a benign pole trumps the hardship that my son faces on a daily basis. We are only trying to provide our son with the life and future that he deserves; the kind of life that our neighbors with healthy children take for granted. Once upon a time, communities came together to help children like my son. It appears those days are gone.”

A pre-submission meeting for the project is scheduled for this Wednesday, April 7th at 7pm at the Glenwood Community Center. Anticipating a large degree of hostility toward the project, the family is still uncertain if they will attend.

 For more information about Alex’s fight, contact his mom Lauren at:  Lauren Fitzgerald,
3200 Daisy Road, Woodbine, MD 21797.  To support the family, contact government representatives in Howard County, Maryland.

April is autism awareness month.  Special Needs Neighborhood.com will share videos, news, activities and more during April to help raise awareness about autism and to celebrate the families and children that autism affects.

Do you know what life is living with autism?  Eric does and here’s a brief look at his life. 

How can you support a family member or friend with autism?

Do you have an Easter or Passover tradition for your children with special needs?

My daughter asks me every day what we’re doing for Easter?  I have no idea is what I want to tell her.  Rather, I mumble something about going to church and hunting for eggs. 

Easter is my favorite holiday.  This said, I haven’t settled on a Easter tradition for my family.  So I’m seeking some neighborly advice here about good ways to celebrate the holiday.  Please post your suggestions!

Also, visit Kaboose.com or Passover.net for fun holiday crafts, recipes, free printables, stories, games and more for children.

VS.

Do you care who writes the check for your child’s special education?

While reading the comments section of the Houston Chronicle  I’m surprised at the hoopla around a local popular minister’s partnering with the Houston Independent School District to fund a charter school for kids with autism.  What’s clear from these comments is that parents and special educators who responded are not bothered that church and state entities work together in this way.  They pointed out how resources are limited for children with special needs.

Proper funding is a large part of what makes or breaks special education.  While the American Recovery and Reinvestment Act meant that states received large increases for FY ‘09 IDEA, Part B funds some states found ways to reduce spending for special education.

Should the special needs community back away from unpopular funding sources for special education?  A specialty private school education costs from several thousand dollars to tens of thousands of dollars usually depending upon the number of specialists involved.  While recent court opinions offer more families funding opportunities for private special education, other parents find that they are unable to face litigation in order to obtain tuition reimbursement for private special education costs or, others want their child educated at her home school within the local community.

How would you pay for special education?