Tag Archives: Occupational Therapy

Special Parents Confidential 64 5p Syndrome aka Cri du Chat

5p Syndrome aka Cri du Chat.

Cri du Chat, aka 5p Syndrome is a chromosomal deletion disorder resulting in a wide spectrum of intellectual and developmental abilities. Each year in the United States, approximately 50 to 60 children are born with Cri du Chat, or 5p Syndrome. These individuals will likely need a lifetime of support. Parents who have children born with this rare disability are usually given a very grim prognosis. In many cases they are told that their child will never speak, never walk, and not be able to accomplish much of anything.

Defying Expectations.

But, as often is the case, many children with Cri du Chat go on to have remarkable breakthroughs and are able to overcome a lot of these challenges. New therapies and treatments along with improved technology has allowed many kids to exceed and succeed far better than anyone expected.

Loving You Big 

Like most people, I was unaware of Cri du Chat, until I was contacted by Leah Moore, who writes the blog, Loving You Big. Her daughter Jordan, now age 7, was born with Cri du Chat, and Leah’s blog has some remarkable stories of how her family’s life goes on with a child who has such challenges, but also such amazing gifts. Leah is a high school English teacher in the New York City area, and can’t help but find the irony of her life, as she says, “in love with words”, yet now faced with a daughter who struggles so hard to speak. She also talks about coping with her emotions and that she now also has two twin sons who bring their own set of issues. It’s a story that many parents of special needs kids can relate to.

Links mentioned in the podcast:

Leah’s 3 favorite posts from her blog:

The Irony of Language.  

Yes My Hands Are Full.

Welcome To The World, Baby Girl.

Video of Leah and her husband Zac, and their daughter Jordan.

Resources:

5p Minus Society. 

The Danger of a Single Story – Ted Talk by Chimamanda Ngozi Adichie.  

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Special Parents Confidential 61 Ehlers-Danlos Syndrome

Ehlers-Danlos Syndromes.

“The Ehlers-Danlos Syndromes, or EDS is a group of connective tissue disorders characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility.” 

The above is from the ‘What is EDS’ webpage of the Ehlers-Danlos Society. EDS is a genetic disorder that, for those who have it, can cause a lifetime of chronic pain and problems. Imagine your joints are so loose and flexible that they become dislocated constantly with little effort. Your skin is far too flexible and easy to bruise. Then imagine the constant, unending pain that accompanies both problems. EDS can also affect other parts of the body including the stomach and intestines, and even how your brain functions.

Invisible Special Needs.

Kids who have Ehlers-Danlos Syndrome are often not recognized as having special needs. Some may need to be in wheelchairs, but then may not need a wheelchair. EDS can cause fatigue, and combined with the chronic pain, can make it difficult for the child to participate in gym class, sports programs, or even having fun on the playground. However, many kids with Ehlers-Danlos Syndrome can appear to be otherwise completely normal.

One Family’s EDS Story.

For this episode we’re talking to Elizabeth Lovett. Her 13 year old daughter, Maddie, has one of the variants of Ehlers-Danlos Syndrome. Elizabeth shares the difficulties that she and her husband faced in trying to figure out what was wrong with her daughter, and finally getting the diagnosis. She talks about the continuing medical treatments and physical therapies Maddie receives to help her. We also find out about the challenges EDS causes for her in school. 

To regular people, children with EDS often appear normal, but they will complain that their legs and arms hurt and that they can’t walk or run. The parents often wind up having to carry the child or find other ways of getting around like a stroller or a wagon. That can look strange, especially if the child is older than a toddler.  There can be a tendency to assume that the child is spoiled or that the parents are too accommodating. However, Elizabeth reminds us that there is far more going on than meets the eye. Just because you can’t see it, that doesn’t mean nothing is wrong.

We also get a chance to talk to Maddie herself about her life and how Ehlers-Danlos Syndrome affects her directly. 

Links Mentioned In The Podcast

The Ehlers-Danlos Society – Excellent website for information and support.

Special Like Me… Madison the Great. The book written about Maddie and her life with EDS.

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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.

Connect With Us On Facebook!

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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Special Parents Confidential Episode 35 Medical Advocacy

Medical Advocacy.

One of the continuous aspects of having a child with special needs is medical care and medical issues. Parents of special needs children often find themselves visiting medical facilities as often as they visit family or friends. Sometimes more often.

Understanding the medical issues our children have, however, isn’t easy. Too often the medical experts we see are not always able to give us the answers we need when we need them. Or in some cases the answers we get create even more questions. Sometimes parents turn to the internet to understand more about the issues and challenges our kids face. But the internet is not always a reliable source of information, and that can lead to poor choices, and bad outcomes that could have been prevented if the parents had access to the right help when they needed it.

With the increasing ‘corporatizing’ of the American medical industry, and insurance companies regulating how medical care can be done, with the emphasis being placed on cost-efficiency, parents can be left confused and uncertain about the care their children are being given. Medical groups and insurance companies are trying to address this situation by offering in-house medical advocacy services, but there are doubts as to whether those services are being made for the good of the patient or the good of the industry.

In the past few years a new kind of service business has taken root: private professional medical advocacy. These companies are usually medical professionals, such as Registered Nurses, who work exclusively for the patients or their caregivers and guardians. Their role is to advocate for the families to make sure that the medical companies and the insurance companies are offering the care and services that the patient really needs.

One such business is North Shore Patient Advocates, based in Chicago. John recently spoke to their President and Chief Advocate, Teri Dreher, RN, to find out about some of the problems that families can encounter when dealing with medical groups and the health insurance industry, and how private medical advocates can help families.

Links Mentioned In this Podcast

North Shore Patient Advocates – Family medical advocacy services based in Chicago, IL.

Alliance of Professional Health Advocates – International database of health care advocates for the United States, Canada, and Worldwide.

National Association of Healthcare Advocacy Consultants – National database of health care advocates.

Or, google search Private Professional Healthcare Advocates for your area.

 

 

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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

Special Parents Confidential Episode 25 Early Intervention

Early Intervention.

There’s probably nothing more nerve-wracking and stressful for any parent than the realization that your new baby, your toddler, your child might have some problems. Whether it’s not speaking, not walking, or not engaging socially like other kids, the hardest question many parents face is, what do I do about this?

Of course friends and relatives will tell you, oh it’s alright, that’s just how some boys or some girls are… and they’ll grow out of it. But that’s not always the best advice, and if  your child does have a developmental delay or a learning disorder, they are simply not going to grow out of it. They need help. And then the question becomes, where do I get that help?

Our guest on this episode of Special Parents Confidential can answer a lot of those questions. Barbara Corbin is the Early On Coordinator with the Kent Intermediate School District in Kent County, Michigan.  She handles Early Intervention, and Early Childhood Special Education with school districts. She helps parents get their first diagnosis and coordinates getting help for children right at the very beginning. Thanks to advances in medical research and therapies, children can be diagnosed very early, and Early On programs can start at age two.

Links to websites mentioned in the podcast:

1800EarlyOn Early Intervention information for Michigan, with links to other States. The website name is also their toll free phone number: 1 800 Early On.

The Arc of Kent County Information resource for people with intellectual and developmental delays.

Center For Disease Control (CDC) Page for Parents and Infants This page has the Milestones and Schedules information to track expected progress for infants and toddlers.

Great Starts Collaborative Early Intervention Page Success Starts Early’s webpage on Early Interventions. The entire site is full of helpful information for all parents.

Pathways.org  Free online resource and tools for parents.

The Early Childhood Technical Assistance Center Online resource tools for families of children with special needs.

Michigan Alliance for Families.  Provides information, support, and education for families who have children (birth through 26 years of age) who receive (or may be eligible to receive) special education services.

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Special Parents Confidential Episode 16 Gigi’s Playhouse Part 1

Special Parents Confidential Episode 16 Gigi’s Playhouse

For many parents one of the challenges in raising a child with special needs is finding the right therapy for your child. Sometimes we get lucky and find the right kind of therapy right near where we live. Unfortunately for some people there’s nothing nearby that can help. Travel can be an option depending on distance, and financial ability.  But for many the only option is to simply wait and hope that the therapy will someday come to them.

Then there are those who don’t wait. They decide that they will do what it takes to bring the therapy to their area to help others as well as themselves. Our guest on this episode of Special Parents Confidential is someone who is doing that right now.

Mika Vuto is the mother of a young girl with Down Syndrome. Although there are therapies available in her town of Gainesville, Florida, there was one group she had heard about, Gigi’s Playhouse, that looked like an incredible asset that could help many people… because they offer their services for free. Unfortunately the closest Gigi’s Playhouse was in Atlanta, Georgia.

Finally Mika decided to open her own franchise of Gigi’s Playhouse in Gainesville. She talks to us in this episode about her journey from a mom looking for help to a community leader who wants to make a difference for her daughter and many other families with members affected with Down Syndrome. She also talks about the services Gigi’s Playhouse offer to children and parents.

The Gainesville Florida Gigi’s Playhouse is scheduled to open in 2015. You can find out more about them and learn how to make a contribution to help by visiting their Facebook Page. You can also learn about their progress on their blog.

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