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by Julia Roberts

10 Things That Make My Special Needs Life Easier

March 28, 2012 in Featured, From Julia by Julia Roberts

I’ve been thinking a lot about what makes my life easier. Sometimes it’s the small things, right? I got to thinking about the little tangible things as well as the big things (like how people treat me during my life in the special needs world). I have a lot more, but I was wondering what YOU want to add to this list. What makes your (special needs) life better, easier, brighter? Little things and big things! Share!

1. Cute, age appropriate pants with elastic bands. Better yet, jeggings because they look like skinny jeans but don’t fasten (for the kids, not me, unless you count the yoga pants I am wearing right now but not for yoga).

2. Medicine pill boxes for 7 days, with AM and PM. Honestly, it seems like a small thing, I know, but it’s life-altering.

3. Helpful front desk/nurses, especially when they smile and act like they like their jobs.

3. Other parents who have open minds to kids with differences because this usually means their kids do, too.

4. Friends who cook. And share.

5. Doctors willing to use technology. Oh, the faxes I have sent across the country. But the email? That really works fast!

6. Drive-through pharmacies. Enough said.

7. Throw-up chin buckets. Too much said.

8. Numbing cream.

9. ER fast track for already compromised kids? Brilliant. And kind. (Also, who invented this?)

10. Velcro shoes instead of laces.

This originally ranMarch 16, 2011…add to the list!

 

 

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Avatar of Admin Dawn

by Admin Dawn

Wish List Giveaway: Rody Gets Meds

November 9, 2010 in Giveaways by Admin Dawn

As part of our Week Before The Week of the Great Big Wish List Giveaway we’re giving away two Rodys EVERY SINGLE DAY THIS WEEK!

This week’s giveaways are the only giveaways open to non-members!

Each day this week we’re giving TWO Rody Hop-A-Long toys from Gymnic! We want to get the word out about some of our great forums and so we’re letting Rody (and his friend, our site mascot Quinn) introduce you.

Medical Special Needs

Rody needs his medicine

Today we want to let you all know about our Medical Special Needs group!

The front page of all our groups is a place for quick updates and to see what’s going on. It’s a little like a Facebook wall. Someone can post an announcement and other people can reply. But it’s not as handy for in-depth discussion as a messageboard, which is why all of our groups also host a forum. Here’s a direct link to the Medical and Special Needs Forum

You can also see the event calendar, which is a great place to post workshops, webinars or livechats you want your fellow Medical and Special Needs members to know about.

Want to meet the other members? Here’s the roster!

You can upload documents to the group, too, like a great hand-out a teacher has shared with you or a flyer you think might interest others in the group.

Finally, like every group, the Medical and Special Needs group has its own livechat! You are welcome to use this anytime. You can schedule a chat (remember to post it to the event calendar!) or spontaneously check in if you realize other people are around.

Now here’s how to win a Gymnic Rody!

Rody is a fantastic Italian toy that a lot of therapists use for trunk work, balance, strength and fun. Rody isn’t just for kids with special needs — he’s fun for all, and well, he’s cute, too! Made of sturdy latex-free vinyl, Rody can hold up to 300 lbs, which means big brothers or sisters and even moms and dads can play with him, too. You’ll need a bike pump (or heck — the free air pump at the gas station) to inflate him but once you do he is ready to bounce!

The Rodys we’re giving away are all the pretty peach with red spots you see in the picture at the top of the entry and here’s how YOU can win him!

  • • First of all, have you already commented on a previous post? Then lucky you! Anyone who has already commented on a post from earlier in the week gets an automatic RE-ENTRY in every single subsequent Rody giveaway this week! That’s right, we’re rolling your entries over! (We decided to do this after consulting with some of our members and they said YES! DO THAT!)
  • • Comment on this post! Commenting on this post lets us know that you want in on today’s Rody drawing!
  • • Tweet this tweet (we’ll be tracking them so you can just copy and paste this):
  • I want to win a Rody! http://bit.ly/wish-list-giveaway #wishlistgiveaway
  • • Blog it! If you have a blog, write a post about our Great Big Wish List Giveaway and link is up
  • • Be a member! Members get an additional entry!
  • • Answer this question at the forum!

After this week the giveaways are only open to members. That means if you want to enter to win an American Girl Doll, a light up Ferris Wheel from K’Nex, a set of six adorable Audubon birds beanies from Wild Republic or one of the other 70+ toys and gifts we’re giving away, you’ll need to be a member! Why not become one today and get ahead of the curve?

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Avatar of Dr. Tiffany Showalter

by Dr. Tiffany Showalter

What frustrates me?

September 8, 2010 in Ask the Occupational Therapist, Insider Insight by Dr. Tiffany Showalter

As someone who works with children with special needs on a daily basis, I can only imagine how difficult it is to have a child or children at home with these needs. Doing everything you can for your child and keeping sanity in your house must be extremely difficult, resulting in many frustrations of your own. What I want to discuss are my frustrations from the other side, in an attempt to help you as the parent understand where we are coming from.Frustration

1. I enjoy frequent communication with you about your child and enjoy even more trying to help you problem solve an issue your child might be having at home or at school. What frustrates me is when I put forth great effort to help you with suggestions and activities for you to do at home and find out later that you haven’t even tried any of them and are still asking for help.

2. What frustrates me is when a parent expects me to fix their child. You have a wonderful child with both strengths and weaknesses. My role as your child’s therapist is to help your child participate and be successful with completing certain skills that they are having difficulty doing within his/her abilities. It is like the saying; “there is more than one way to get a job done”. In many cases, my job is to find that other way.

3. I know parents are often not experts when it comes to child development and developmental milestones. I can help you there and provide tables. What frustrates me is when you are expecting skills beyond your child’s developmental level. A simple web search can yield what is appropriate or ask me for that information…I am happy to provide you with it.

4. As a parent of one child with another one on the way, I am sure there will be many days when I compare my girls. What frustrates me is when you compare the skills of one child to the next. Even if your children were the same age, had the same abilities and disabilities, and participated in the same programs, there are still countless factors that contribute to your child’s development. It is unfair to compare them.

5. I haven’t had to deal with developmental pediatricians or other medical personnel explaining my child’s diagnosis to me, but what frustrates me is when I have to explain something essential to your child’s prognosis with you when you should have been made aware long before ever meeting me. For example, I have had to explain tone at least 4 times this school year. These were all situations where the children were receiving ongoing medical interventions to address such tone. The parents asked me what we could do to “fix” the tone. I am writing an article on tone itself but in a nut shell here it is. Tone is neurological and can only be permanently “fixed” with surgery or medicines. Various techniques including tendon tapping, casting, icing, vibration, and gentle rocking to mention a few can only temporarily affect tone. More appropriately would be to modify the task that the tone is impacting to increase your child’s success. In two of these four conversations, the parent was brought to tears in learning this information. I think knowledge is power and am happy to provide you with such, but how frustrating that the doctor did not explain this to you. I would cry too.

Just letting off a little steam! I really do love my job!

Disclaimer: I hope you enjoyed reading this article. Please remember you are reading this information of your own free will and are taking the information at your own risk. The author is the legal copyright holder of this material it may not be used, reprinted, or published without my written consent. This information is for entertainment and informational purposes only and is not intended to provide or circumvent medical, legal or other professional advice.

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by Children's Healthcare of Atlanta

Medicine Tips from Children’s Healthcare of Atlanta

July 29, 2010 in From the Hospital, Insider Insight by Children's Healthcare of Atlanta

When your child is ill, medicines can help him get better. But they can also hurt him if you don’t use them correctly. Your doctor or pharmacist can help you give your child medicines safely. Before using any medicine, be sure to follow these safety tips.

What should I know about my child’s medicines?

Ask your child’s doctor or pharmacist if you have questions about your child’s medicine or how to give it. Ask your child’s doctor, nurse or pharmacist to write down things that you need to know for each medicine your child takes. Each time that you give a medicine to your child, read the label three times to avoid mistakes.

Know about the medicine, including:

· The name – both generic and brand names when needed
· What it’s used for and why your child takes it
· Common and important side effects
· How to store it. Some medicines need to be kept in the refrigerator.
· When to finish your child’s prescribed dose and the medicine’s expiration date. Throw away all medicines after this. Follow the advice on the medicine label or ask your pharmacist how to dispose of them.

Know how to give the right dose of the right medicine at the right time. This includes:

· How much to give your child (the right dose)
· How to give it, such as by mouth or into the eyes or ears
· How often to give it
· What times to give it
· How long your child should take it
· How much your child weighs. The dose of many medicines is based on weight.

Know what to do about foods, drinks and other medicines, including:

· Whether you give the medicine with or without food. If the label says to give the medicine on an empty stomach, give it 1 hour before or 2 hours after a meal.
· What foods, drinks or other medicines your child should avoid while taking this medicine. This includes over-the-counter medicines, herbs and supplements.
· If you can mix the medicine with any liquid or food. Ask your child’s doctor or your pharmacist.
- Some medicines may be mixed with a small amount of liquid (such as formula or milk) or soft food (such as applesauce or pudding) to mask the taste.
- Use only a small amount (one or two teaspoons) of liquid or food to make sure your child takes all the medicine.
· If you can mix medicines together.

Know about these safety tips for your child

· Raise your child’s head and shoulders to help prevent choking.
· Watch to make sure your child takes the entire dose.
· Keep all medicines in their labeled container where your child cannot get to them. If possible, store them in a locked cupboard.
· Never give your child anyone else’s medicine.
· If your child is in daycare or school, let your child’s teacher and school nurse know that your child is taking medicine.
· Teach your child that medicines are NOT candy. Do not call medicine patches stickers or tattoos.
· Teach your child not to share his medicines with others. This includes medicine patches.
· As your child gets older, teach him about the medicine that he takes. Help him as he begins to take his medicines by himself.

Giving liquid medicines

· Shake liquid medicines for 30 seconds if the label tells you to do so.
· Do not use kitchen spoons to measure your child’s medicine. Use a pediatric measuring device such as an oral syringe or dropper. You can buy these items at your drug store.

Giving tablets and capsules

· Do not crush any tablet or open any capsule unless your child’s doctor or pharmacist says it is OK.
· You may crush some tablets and then mix them with a small amount of liquid or food. You can crush tablets between two spoons or a spoon and a piece of wax paper. You can also buy pill splitters and crushers at the drug store.
· You may open some capsules so that the medicine in them can be added to a small amount of liquid or food.
· If you add a crushed tablet or the contents of a capsule to food or liquid, make sure that your child eats or drinks the mixture as soon as it is mixed.

Know what to do if problems occur

· What to do if your child vomits after taking the medicine. Check with your child’s doctor. Some medicines are OK to give again and some are not.
· Not to give extra doses or skip doses. If you forget a dose, give it as soon as you remember. If it is almost time for the next dose, skip the missed dose but do not give two doses at the same time. If you aren’t sure whether to give the forgotten dose or skip it, call your child’s doctor or pharmacist.

Know what to do about over-the-counter medicines
· Check the type, strength, and dose of the medicine carefully. These medicines come in different forms and strengths.
· Use only the measuring device that comes with the medicine.
· Don’t confuse teaspoons (tsp) and tablespoons (tbsp).
· Look at the active ingredients section on the medicine label. Do not use two medicines at the same time that contain the same active ingredient.
· Do not use cough and cold medicines for children under the age of six unless your doctor tells you to.
· Check with your child’s doctor or pharmacist before giving any over-the-counter medicines, herbs or supplements with any other prescription medicines.

Know how to check medicines at the drug store

· Make sure the medicine is for your child and is the correct medicine.
· Make sure you can read the label and understand the directions. Ask if you have any questions.
· If your child’s medicine looks different than what he had before, ask the pharmacist to double check.

Know who to call if problems occur

· For routine questions or concerns about medicines, such as questions about the dose or side effects, call your child’s doctor or your local pharmacist.
· Call 911 or go to the nearest emergency room right away if your child shows signs of severe allergic reaction such as hives, swelling of his mouth, eyes or face, breathing problems, wheezing, chest tightness or feelings of faintness or if you have an urgent concern or emergency.
· Call 911 at once if your child takes too much medicine or has a bad reaction to his medicine.

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Avatar of Julia Roberts

by Julia Roberts

Betty: Learning to be her own advocate

July 25, 2010 in Featured, Future Glimpse by Julia Roberts

While we are preparing for the BlogHer Special Need Mini-Con, we are going to rerun several of our articles that have run over the past 15 months. We’re hear still, so let us know if you need anything.

—–

It is before my son is on dialysis. In fact, it’s before I can fathom that my son will ever be on dialysis. I am sitting in a conference room and listening to a teenager talk about her experience with ARPKD — the same disease that my kids have. She talks about the symptoms and how they make her feel. I listen intently while she explains that in school, she’ll raise her hand and by the time it’s her turn to answer the thought she was going to share is gone. I replayed that conversation over the years as I tried to understand my kids’ kidney failure and the impact on their learning.

Thanks to Betty I understood more. When I asked her to share her story so others could benefit from her experienced she didn’t hesitate. Here’s her story and how she learned to be her own advocate.

My parents got the diagnosis at my birth. I was born without amniotic fluid, with a pneumothorax. As soon as I was born they took me away from my mom and later looked up my symptoms in a medical book and told her that I had ARPKD and I would die within 2 weeks. I’m twenty now and I had my kidney/liver transplant December 12th 2009.

There have been different things throughout my life that I would say have been especially hard. I didn’t feel too different most of the time before I was 13. A lot of the time I looked different than other people because I had an enlarged abdomen. Then when I got sicker it was very hard to not be able to go to school and hang out with friends and go to parties and graduate high school and go to college. I just wanted to do regular teenage things. It was made even harder by people who were jealous that I didn’t come to school sometimes and said I was lucky. They didn’t understand that it wasn’t because I didn’t want to stay home; I just couldn’t make it through the day.

Becoming her own advocate

I’m not sure what my first memory of advocating for myself is but I think I started out by telling nurses things like where or how to take my blood or give me an IV. Little things like that just slowly turned into bigger things — things that would affect my treatment like when I was misdiagnosed. I did research and tried to explain to my doctor what I thought and when he didn’t listen to me I went to a specialist in ARPKD to see if I was right. She said I was and sent my nephrologist a note.

A few times if I had not advocated for myself I would have been seriously injured or could have died.

I think I started advocating for myself because I saw my mom do it so often. She wasn’t like one of the parents that just sits there and listens to the doctors without ever trying to learn or question them; she always tried to do what was best for me no matter what. She also always supported me. It was easy to advocate for myself when I always had someone who would believe me and advocate for what I wanted when people weren’t listening.

Making her way in school

For school, I tried as hard as I could for as long as I could. For all three years I was in high school I had trouble going a full day. In the second semester of my third year the biomedical academy kicked me out for having an incomplete in AP US History because I was absent. The school had been trying to make me go to home bound until I turned 17 . By then so I felt no use pushing myself too much at school.

I finished out the year in home bound but decided that even it was too hard at that point, especially because I still had to go up to school to cram physics and take all the quizzes and exam. After that I decided I would just get my GED. My parents were completely supportive of my decision. It seemed like a waste of time to go back to high school after all my friends had graduated since I had such a low GPA from all of the incompletes in my classes. So one of the counselors from my high school and I decided that I was going to get my GED and then go to college.

Invisible disability

Nobody really treated me like I was sick because most people couldn’t really see that I was. They treated me differently because I couldn’t come to school all the time and so I wasn’t reliable for things like group projects. Most of them also didn’t get close to me because they didn’t see me every day like all their other peers. The ones that knew I was sick were my friends. Those few real friends treated me just the same.

My recovery seems never ending to me. My scars are completely healed now and my encephalopathy is getting better every day. My balance came back just a few days after my transplant but my memory, concentration, reading, etc. are getting better still. I am still trying to get my strength and stamina back, but there is a huge difference in what I can do now and what I could do before transplant.

The hardest things in my recovery have been medicine related. I gained a bunch of weight and acne from the Prednisone and I had to take a lot more Prednisone than the average transplant patient since my liver rejected twice a month after my transplant from not having the brand name of another immunosupressant.

“I plan to be a doctor”

My future plans are to get as healthy as I can. I want to get my driver’s licence and GED and then go on to college. I plan to be a doctor. I want be a nephrologist and a hepatologist that specializes in ARPKD. I really think that I could identify with and help other people with my disease and educate other doctors further on it. I would really just like to live my life to the fullest now and enjoy it since I have gotten it now.

For both parents and teens I would really say that educating yourself on your kid’s or your own medical problems is one of the best things you can do. It is easier — and people take you much more seriously — when you have an idea of what your talking about.

You need to think about what the best thing is in the long run after you educate yourself. Think about the past experiences that you have had and if anything like that is happening or applies in the current situation.

I’m not sure what my parents did differently from other peoples parents, but some of the people with my disease that I know just wanted their medical problems to go away so badly that they ignored them and that lead to greater problems. I’m not sure what else I can say for the parents to do besides just supporting their kids. Everyone is different and some people just have an easier time with medical things and advocating.

Advice to other teens

For teens having challenges, my biggest challenge besides just being seriously ill in general was getting depressed from constantly not being able to do things and feeling bad and feeling like it was all never ending. What really helped me with all that was surrounding myself with people and activities. I would go to book clubs and women’s groups and youth groups and girl scouts and games nights with people.

If my friends were doing things I couldn’t do, I would hang out with adults instead. Most adults were able to treat me normally and I was able to relax and have fun that I could handle. It all really helped a lot. Reading books about similar situations, talking to people with my illness or other illnesses and their families, talking to people who had similar experiences and were now doing better, were all helpful things I tried to do.

-Betty Foreman (ARPKD/CHF, kidney/liver transplant Dec ’09)

Do you have any thoughts to share with Betty? Comment here and we will forward them on to her!

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Avatar of Admin Dawn

by Admin Dawn

Get the Facts: Sun Protection and Sunscreen

June 8, 2010 in Insider Insight by Admin Dawn

by Leslie P. Lawley, MD

We know everyone should use sunscreen, but why is it so important for kids? Good studies show that 25-80% of the sun damage leading to skin cancers and wrinkles occurs before age 18. Either end of the spectrum represents a significant amount of exposure and risk. Therefore developing and encouraging good sun safety habits early in life is important. A recent study in Colorado linked sun exposure in water areas (where reflection is also high) to the number of moles on children. The overall number of moles is a risk factor for developing melanoma later in life.

Choosing the right sunscreen

The sun protection factor (SPF) indicates the strength of the sunscreen against UVB rays. At this time there is not a scale for protection against UVA rays, however sunscreens are marked as having UVA coverage. The SPF is determined by testing 2mg of sunscreen per cm2 body surface area and exposure time to UVB rays to develop sun burn. It can be translated to the amount of time you can stay in the sun with less chance of sunburn. For example, if it only takes 10 min of sun exposure for you to start burning, then a sunscreen with SPF 30 affords you 300 min of time without burning. An SPF 60 would then give you 600 min.

The important point to remember when determining SPF is that you have to apply the correct amount of sunscreen in order to gain the effect: 2-3 tablespoons or 1 oz covers an adult therefore 1-2 tablespoons for each application on a child. In addition, over time sunscreen will lose effectiveness and wear off due to sweat, water exposure, and rubbing so you will not actually gain 300min from an SPF 30 sunscreen. That is why it is recommended to reapply sunscreen every 2 hours and after swimming. It is best to apply the sunscreen 30 min prior to going outside. Limiting sun exposure between 10am and 4pm when the sun is strongest is helpful too.

Are the protective shirts and swim gear as effective as sunscreen?

Child in sun protective clothingYes. Sun protective clothing is marked with a UPF (Ultraviolet Protection Factor) instead of SPF. These fabrics are engineered to protect the skin from the damaging UV by absorbing the rays. Many sun protective clothes and hats are UPF 50 meaning that only 1/50th (or 2%) of the UV rays actually pass through the clothing to your skin.

There are many companies selling such clothing so I recommend researching the manufacturer to ensure a quality product. Note that wearing a regular white T-shirt, especially when swimming, does not provide good protection from the sun (ave UPF 7). In addition there is a laundry additive available that infuses a sunscreen into your clothing.

When does that sun protective clothing lose their effectiveness?

Great question. The regular washing and wear and tear of this clothing decreases the protective factor but it is not clear how long they last. Again research in the quality of the product is important to ensure buying an article of clothing that will last longer. The laundry additive lasts for 20 washings.

How long does sunscreen last-we have bottles sitting on our shelves from last year. Still work?

All sunscreens should be marked with a date of expiration. Beyond this date the actual efficacy of the sunscreen is in question. If you are using the correct amount of sunscreen with each application (see #2) then a bottle should not last from one summer to the next. Most sources suggest that if a date of expiration is not on the bottle to discard it after 2 years.

I’ve heard that if you have a bad sunburn your chances increase to get melanoma later in life. Can you explain?

Studies have identified certain risk factors for developing melanoma later in life. One of these is a history of blistering sunburn: one blistering sunburn can double your chance of developing melanoma. Additional risk factors known at this time are family history of melanoma, a large number of moles and “funny looking” moles (called dysplastic moles) , family history of dysplastic moles ,fair skin and red hair, personal history of melanoma, and an compromised immune system.

Kids with special needs often are on a lot of medicine; can that make them more susceptible to skin cancer? Or can different medicines make sunscreen ineffective?

Sunscreens would not be directly less effective due to systemic medications, however, some medications make patients more sensitive to UV rays of the sun. Therefore if your child is taking a medication that makes him/her more sensitive to sunlight then the sunscreen used may need to be a higher SPF to get the same effectiveness. Some examples of medications that may cause sun sensitivity include, but are not limited to: doxycycline, methotrexate, ciprofloxacin, sulfa medications, alprazolam, griseofulvin, glipizide, and vorizonazole. Speak with your child’s physician regarding your child’s medications to understand if there is increased sensitivity to the sun reported with their specific treatments.

The Skin Cancer Foundation has a very informative website for further information: www.skincancer.org.

Leslie P. Lawley, MD is an Assistant Professor of Dermatology at the Emory University School of Medicine

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