Tag Archives: Cerebral Palsy

Special Parents Confidential 71 Patrick Parkes Part 1

Special Parents Confidential 71 Patrick Parkes Part 1.

Patrick Parkes shares his life story. All parents worry about their kids and how their futures will turn out. But for parents of special needs kids, those worries can be much more immediate. It’s not just ‘will my kid make it through school’ – but will my kid make it through this grade? Will my child make it through the next grade? What about high school? What will life be like after high school? Can we even think about college or tech school or even some kind of career?

What It’s Really Like.

That’s why I think one of the best things for parents is to be able to hear from adults with special needs who have gone through the challenges and have been able to make a successful life for themselves. Knowing that others have made it can be very reassuring. Over the next few episodes of Special Parents Confidential, we’re going to do just that. My guest is Patrick Parkes, who I met earlier this year.

Introducing Patrick Parkes

Patrick was born with cerebral palsy and has had numerous challenges throughout his life. He made it through school and into college and he is now a substitute middle school teacher in West Michigan and he’s also a Para-Olympian in the sport of Boccia. Patrick’s story and his unique perspective as someone who had special needs in school and who is now a school teacher is quite informative and I think everyone who hears it is going to learn something interesting.

LINKS FOR MORE INFORMATION

Patrick Parkes on LinkedIn

USA Boccia Website

Patrick Parkes on Twitter

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Special Parents Confidential 59 Parent Stories 03

Parent Stories 03

We continue our new series of episodes dedicated to Parent Stories – real life experiences raising a child with special needs.

When I first started doing these podcast episodes, my goal was to provide two things – answers and advice from experts on many subjects of concern to parents of special needs kids, and stories of experience from other parents of special needs kids. I wanted to re-create some of the support group meetings I’ve attended where we would hear from an expert and the the parents would get to talk. Hearing parent stories can help because we all seem to do better when we know we’re not alone.

Of course, when the episodes started I mostly began finding lots of professionals willing to talk about their areas of expertise that could help all of us with our kids. And the parent stories idea has kind of taken a backseat to those episodes on advice.

Every Kind of Special Need

These episodes are going to return to the second goal. We’ll hear from parents who’s kids are either still in school, or recently graduated from school. Parents who have worked for and fought for their kids, parents who have struggled and may still be struggling, or parents who have somehow gotten through. They may not have always gotten exactly the help they wanted for their child, but they were able to get  the best they could and their kids are either on their way toward independence or already there.

The first two Parent Stories episodes dealt with parents of children with Autism, largely because I knew those two parents. But my goal is to have parents of kids with every kind of special need talk about their experiences. For that matter, I’d like to also include adults with special needs who want to talk about their lives and experiences. 

Welcome Jenny Moo

In this episode, we hear from another parent I know, Jenny Moo. Her daughter Calla was born with Cerebral Palsy, and was also diagnosed with epilepsy. Jenny talks about the treatments Calla received at birth, a cooling cap technique, that helped to minimize some of the affects of the CP, and the struggles that Calla still has to this day. She also talks about the difficulties with epilepsy, the special education supports that Calla gets, and some of the difficulties she’s had with health insurance. Jenny also talks about the new outlook on special needs and special education she experienced both as a parent, and in a class she took when she began working on renewing her teaching career.

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A great way for you to stay in touch with me and communicate your thoughts on these episodes is on the facebook page for Special Parents Confidential. Use the Facebook button on the right side of this website, or the button at the bottom of this text, or use this link. You can also search Special Parents Confidential on Facebook. It’s also a great way to share our podcast with everyone you know.

Helpful Links:

Cerebral Palsy Guide – U.S. based online support group and advocacy site.

Cerebral Palsy: Hope Through Research – from the NIH National Institute of Neurological Disorders and Stroke – fully updated research information from the National Institute of Health.

Epilepsy Foundation – U.S. based online information and resource guide website.

Epilepsy Information Page – from the NIH National Institute of Neurological Disorders and Stroke – fully updated research information from the National Institute of Health.

Head Cooling May Help Babies With Brain Damage – Article from WebMD.

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MSU Announces Study for Kids with Cerebral Palsy in Michigan.

MSU Announces Study for Kids with Cerebral Palsy in Michigan.

A new Conductive Education Evaluation Project (CEEP) study is being conducted by the Department of Epidemiology and Biostatistics of Michigan State University. They are looking for children in Michigan who have been diagnosed with Cerebral Palsy, and are between the ages of 2 and 6.

From the brochure:

“Conductive Education (CE) combines the development of physical, social, and thinking skills in a daily educational program for children with motor disabilities such as CP or spina bifida. It’s goal is to teach children how to make the most use of their muscles and to encourage social interaction and independence. Children learn in a small group setting with attention to individual needs. Many CE activities use rhythm, music, a specially designed exercise equipment.

Conductive Education was developed in Hungary in 1945 and is currently practiced in over 30 countries. Grand Rapids’ private, non-profit Conductive Learning Center was established in 1998. Find more information about CLC’s work at its website: Conductive Learning Center.”

Who Is Eligible To Participate

“We’re recruiting 2-6 year olds who are residents of the State of Michigan, diagnosed with cerebral palsy, offering a free 4-week session at the Grand Rapids, Michigan Conductive Learning Center, whose program we are studying.  Because CEEP is funded by the Michigan Department of Education, children must be state residents to participate.”

What happens when you enroll?

“You and your child will be interviewed by the CLC director for eligibility in the study.

If eligible, your child will be assessed with standardized tests to learn about their movement abilities. These assessments can be enjoyable for children. Assessments will be videotaped with copies available on request.

Parents will be asked to complete several questionnaires about their child’s physical and social skills and activities.

At no cost, your child will receive a four-week Conductive Education session (a total of 60 to 100 hours) at CLC.”

The Conductive Education Evaluation Project (CEEP)

“CEEP is a research project designed at Michigan State University by the Cerbral Palsy Outreach Network (CPON) team. The study will compare the effectiveness of Conductive Education to other cerebral palsy services for children ages 2-6. Families will be asked to participate i a free four week long Conductive Education session that fits their child’s age and abilities.”

How To Enroll:

Download the following CEEP Study Brochure .pdf for more details.

ceep study brochure

Or contact:

Deborah Weiland, MSN,                                                                                                                           CEEP Study Coordinator Department of Epidemiology and Biostatistics                                             909 Fee Road, B601                                                                                                                            Michigan State University                                                                                                                        East Lansing, MI 48824                                                                                                                                              Ph: 517-432-7182 / Toll Free 877-417-6824                                                                                       Email: dweiland@epi.msu.edu

 

Traveling For Medical Or Therapy Reasons – Some Tips

Traveling For Medical Or Therapy Reasons – Some Tips.

One of the most concerning dilemmas faced by parents of special needs children is the search for medical specialists. Whether it’s for physical disabilities, developmental disabilities, or learning disabilities, our kids have challenges that sometimes cannot be treated by standard family medical practices.

To complicate matters further, depending on where you live there may not be any specialists who are qualified in your child’s particular need. Furthermore, in some cases, complex issues arise that require a higher degree of specialty in your child’s issue.

The unfortunate fact is for many parents of special needs children, getting the right kind of medical or therapeutic services may require traveling long distances across a state or even several states in order to get the help needed.

We faced this situation a few years back, and after doing a lot of research, we were able to find services that made traveling a lot easier and less stressful.

Car Rentals. 

When making repeated day trips — traveling by vehicle to and from your destination — you might want to consider renting a car instead of putting all the miles and wear on your own vehicle. Here are some tips on car rentals:

Renting a car from an agency that is not located at an airport is usually cheaper. Car rental offices located at airports or transportation hubs charge extra return and usage fees that are typically waived at off-site car rental offices. Car rental agencies usually have a greater number of small to mid-size cars for rent than large sedans, vans or SUVs, so you’ll have an easier time getting the vehicle you want if you can take a small to midsize model.

Most car rental agencies offer unlimited milage in their packages. However, almost all of them have a two to four state restriction on where you can drive the car. For example, if you rent a car in Chicago, you may be restricted to travel only in Illinois, Indiana, Michigan, and Wisconsin (or fewer states). Be certain to ask the rental agent if you need to travel further than your region. The only rental agency we found that has absolutely no restrictions on inter-state travel within the 48 contiguous states is Hertz… however be sure to ask because that may change without notice.

Travel By Air.

When traveling a greater distance than you can drive in one day, you may want to consider air travel. Two great organizations exist to help you make those flights for free.

Air Care Alliance. Air Care Alliance helps to coordinate public benefit flying groups like Angel Flight, Operation Angel Planes, Wings of Hope, and many more. They offer free travel for medical needs on private planes in the United States, as well as international public benefit flight groups. 

Because Air Care Alliance works with private plane owners with all different kinds of aircraft you might fly on anything from a corporate jet to a small four passenger plane, depending on your needs. This service can accommodate small town airports that are not often served by commercial flights. Check out Air Care Alliance’s directory of groups that they work with:          Air Care Alliance Groups Directory

Miracle Flights. Miracle Flights – How We Help Miracle Flights offers free commercial airline travel from frequent flyers who donate their milage awards. They also work with the airlines for accommodations and accessibility for specialized medical needs. Miracle Flights has free travel available on domestic U.S. flights, as well as International flights, and can even help families accommodate service dogs on flights.

Overnight Stays.

Let’s face it, hotels can be expensive and a stay in one for medical or therapy reasons is typically not covered by health insurance plans. Fortunately there are some options that are very affordable and offer great services for special needs children.

The most well known are the Ronald McDonald Houses. Most RMH locations offer accommodations for families of children up to age 18 receiving medical or therapeutic care. The facilities are equipped with all accessible rooms, elevators, indoor play areas, libraries, video game consoles, and other fun areas for kids. Some also have outdoor accessible playgrounds. Rooms vary from two beds and a bathroom, to family rooms with living rooms and dining tables, a kitchen, and one or two bedrooms. Laundry facilities are available and a group kitchen and dining room are also included for all guests. Most RMH facilities also offer transportation services to the hospitals or clinics where you need to go, as well as transportation to local airports, train stations, or bus depots.

Ronald McDonald House facilities typically offer overnight stays for a donation of up to twenty five dollars per night, depending on location and availability, but can work with families on ability to pay with free of charge options. If the RMH you are hoping to stay with does not have a room available for the night you need, they can offer vouchers for greatly reduced rates at nearby hotels of up to seventy five percent off a regular night’s stay, depending on availability. It’s best to call the local RMH near your destination for detailed information and reservations.

Other options: Check with the hospital or clinic that you are traveling to for other recommendations on overnight stays. Some offer hotel style rooms for families right within their facilities. There may also be other accommodation services for family medical stays in the nearby area that they can arrange for you.

Final Thoughts:

Traveling for medical or therapy reasons can be one of the most stressful things a family will go through. Take the time to research where you are going, how to get there, and where you will stay before you go. Ask lots of questions about accommodations, nearby facilities, even information on local grocery and retail stores. Get directions and use internet map services or GPS apps to help you figure out where you will be and how to get around. If you travel without a vehicle, find out about public transportation options and/or taxi services in the city where you are staying.

Get to know the city you’re traveling to with Wikipedia and Wikivoyage (formerly Wikitravel), especially if you’re going to have a stay of a few days or more, so that you will have options for things to do when you have some time to venture out for a break. This will happen. You’ll need a break from time to time… it won’t make you a bad parent to take a little time for yourself. You might also have time to take your child out for a little adventure between therapies or medical treatments. Knowing where to go for fun at those times will definitely help.

Planning ahead and lots of research will help you make the best of a difficult situation and make the experience better for your child.

Click on the link below for a downloadable PDF version of this article.

Traveling For Medical Or Therapy Reasons – Some Tips