Medical Misinformation

August 20, 2015 By in Caregiver Tips & Tricks Tags: , , 2 Comments

In the past year or so I’ve been around a lot of other parents whose kids have significant medical needs. I’ve learned a lot from them, and I hope I’ve done my part to share what I’ve learned with others. The value of this kind of relationship can’t be described in words. Over time you learn who is trustworthy and who isn’t. Until then, be sure to run suggestions by your child’s doctor. It’s unlikely anyone out there would intentionally try to harm your child, but there’s an overwhelming amount of misinformation circulating online.

Anyone can create a website. Literally anyone, and at no cost. There are a lot of great resources out there, but some are written by people unqualified to make the claims they’re making. Even if something is a valuable piece of information, there are frequently times where what works for one child may harm another. When people search for information on the internet, some of it inevitably comes from these feeder sites which claim to be an authority on their topic. This information is then shared by mouth as well as through reputable aggregation sites.

Continue reading →

Ableism and its Impact on Our Children

August 18, 2015 By in Controversial Topics Tags: , , , 2 Comments

As parents, we’re keenly aware of the difficulties our children struggle with and do our best to help them blend in with the rest of society. We know what happens when you don’t blend in. You get stares. Children ask questions, and instead of answering them the parents shush them, as if the act of noticing someone else is different is inherently naughty. The child’s question goes unanswered, and so the child stares. The parent looks everywhere but in your direction and ignores you and your child’s existence.

“…the “ableist” societal world-view is that the able-bodied are the norm in society, and that people who have disabilities must either strive to become that norm or should keep their distance from able-bodied people.” (1)

Is this the intent of the parent shushing their child? It’s doubtful. In the process of learning, children have a tendency to ask a lot of questions in public that aren’t appropriate public topics. The intent of the parent is likely good. Unfortunately, those good intentions send a specific message to the child. Disability is to be ignored. Do not try to understand why someone looks different. Leave the person that looks different alone (avoid them).

Continue reading →

PTSD in Special Needs Parents

August 16, 2015 By in Caregiver Health and Wellness Tags: , , , , 5 Comments

PTSD (Post-Traumatic Stress Disorder) is typically heard in the context of war veterans. You can develop PTSD from any experience that’s painful or upsetting, including caring for a special needs child. How does this happen?

  • Long NICU stays where the child is on the verge of death.
  • Babies so pre-mature they need constant 24/7 care to survive.
  • Hospital admissions for life-threatening infections.
  • Finding out your child has a life-altering and lifespan shortening diagnosis and watching them fight it every day.

There are many more examples. I wanted to name just a few to make my point clear. Almost every special needs parent is at some level of risk for PTSD. They are constantly exposed to situations that are extremely stressful where the results are completely out of their control. All the while, something bad is happening to someone they love more than anyone else in the world (except their other children of course).

Continue reading →

Toxic Relationships Must Go

August 14, 2015 By in Caregiver Tips & Tricks Tags: , , , , , , , 1 Comment

What do I mean by toxic relationship? There are a lot of different types. Someone can be…

  • Physically abusive
  • Emotionally abusive
  • Controlling

I’m sure there are others, but these are the main ones I’ve come across. Your child, especially a special needs child, is the best reason in the world to put an immediate end to these types of relationships. Typically these are discussed in the context of spousal abuse, but it also applies to friends and family members as well. Here are some examples of toxic behavior…

  • A family member hits your child out of anger for misbehaving with no communication as to what they did wrong or how to improve.
  • A friend, angry that you no longer see them, tells you how lazy you are for not getting together more often. They are persistent and continue to put you down, even going so far as to accuse you of making up your child’s health problems to avoid them.
  • A family member insists you make medical decisions for your child in the way they would like them made. They constantly seek information and even go so far as to call doctor’s offices to try and get information.  They may even lie to the office staff about their level of involvement in your child’s care in order to skirt HIPAA regulations.

Continue reading →

Your Child Looks too Healthy to Have a Tube

August 12, 2015 By in Caregiver Tips & Tricks Tags: , , , , , , , , , , , 2 Comments

First, thank you. Unfortunately, it’s not that simple. If only getting to a low side of normal weight automatically made my son want to eat and drink enough to sustain himself. That would make everything so much easier. There’s something I need to share with you while we’re on the topic.

My child is healthy because of the tube. If not for the tube, he would still be off the bottom end of the growth chart. For the first year of his life he gagged on anything put into his mouth besides formula (and sometimes that too), so he wouldn’t have been able to take any medication. We suspect its because of his medication he eats what he does. He has all the behavior symptoms of GERD (gastroesophageal reflux disease) when left untreated.

Continue reading →

Benefits of Joining a Support Group

August 10, 2015 By in Caregiver Health and Wellness Tags: , , , , , , , , , , Leave a comment

Support groups are one of the most helpful things I’ve found to keep my sanity. There’s nothing quite like sitting down and talking through your problems with people that deal with the same issues you do each and every day. I vaguely remember what it was like before I joined them, but mostly its a blur. I knew nothing about tube feeding when they placed my son’s nasal gastric (NG) tube in the hospital. If not for our home care nurse coming once a week I would’ve been completely and utterly lost.

A few people have told me I appear to be handling things really well and have my life together. I thought about why, and it’s because of my support network I’m able to stay calm and keep going. Without them my sanity would scatter to the wind within a matter of days.

Continue reading →

Three Signs You Need to Fire Your Child’s Home Nursing Agency

August 9, 2015 By in Caregiver Tips & Tricks Tags: , , , Leave a comment

Great tips for those who are frequently battling with their home nurse.

madvocator's avatarMadvocator Educational and Healthcare Advocacy Training

For those of us whose children require in-home nursing, agencies are often the first resource suggested to us by hospital personnel and discharge nurses. Because they have access to multiple nurses, agencies can often respond to the need for care quickly. Many hospitals suggest that families use agencies instead of independent nurses because they assume that the quality of care is managed more closely in agency settings.

By contrast, most families who use home nursing have found that agency nurses are often less invested in the care of their patients, as they can simply quit and find another agency with little consequence. The way many agencies are managed contributes to the poor quality of care some families receive from agencies, since the nurses are bounced from one case to the next when families are dissatisfied with the care their child is receiving. We had this experience recently with an agency…

View original post 636 more words

Eating Problems Requiring a G or JTube are More than Picky Eating

August 7, 2015 By in Feeding Tube Tags: , , , , , , , , 3 Comments

Sometimes people say insensitive things. It’s generally not intentional, and I prefer to assume everyone has good intentions at heart. In the spirit of those good intentions, I would like to differentiate between what constitutes needing a g or jtube versus being a, “picky eater.”

Picky eaters are a struggle. Their parents spend a lot of time encouraging and coaxing them to eat, and they frequently refuse to try new things. At the end of the day though, the child does eat. Their food stays in their stomach. They receive enough calories and nutrition to grow. While frustrating, they can generally be expected to at least pick at their food if their belly is empty, provided you can find something that appeals to them. Since they do eat, there are usually a few fallback foods they’ll consume. There’s no expectation that they would truly starve to death if you didn’t produce the perfect series of meals (though it may feel like it sometimes).

The difference between that and needing a g or jtube is that tube-fed children really would either starve to death or be so nutrition deprived they wouldn’t be able to grow if not for tube feedings. At the table they have the appearance of a picky eater, from start to finish. They refuse to eat foods provided. Additional foods are also rejected. When pressed, they may take a bite or two. The experience displays everything you would expect from a particularly challenging meal time with a picky eater. For tube fed children, it’s like this every meal. There is no food you can offer that they’ll gobble up (or if there is, it’s nutritional value is extremely limited and it isn’t viable to be a primary source of nutrition).

Continue reading →

Struggling to Thrive, Introduced on, The Green Study

August 5, 2015 By in Awards and Special Mentions Tags: , 2 Comments
Struggling to Thrive, Introduced on, The Green Study

Generally, I would never post twice on the same day. I am, however, extremely excited to share with you that I have been introduced on The Green Study for the first week of August! Please, check it out. There are two other blogs introduced alongside of mine. They’re definitely worth a look.

I swiped her header to make the post look nice. I hope she doesn’t mind!

The Difficulties of Breastfeeding, a Special Needs Perspective

August 5, 2015 By in Controversial Topics Tags: , , , , , , , , , , , 4 Comments

In honor of breastfeeding support week, I would like to share this with all of you. I wrote it a good while ago and decided to shelf it indefinitely. I think I’ve come to a place where I’m finally comfortable sharing. Enjoy!

Let me start by saying, a lot of people in the previous two generations do not understand breastfeeding. They bought in to the sales pitch that formula is better for your child. They believe bottles are better than the breast. The first time your child seems to struggle (even if only a little) being breastfed, the overwhelming response is that shoving a bottle of formula in their mouth will make everything better.

In order to balance this out, others have gone to the extreme to claim breastfeeding is best in all cases. There is never a situation where formula needs to be given, and if you give your child formula you’re denying them the chance to bond with you fully. The truth is in between, as is usually the case. There are situations where children need to be fed formulas. I didn’t know this when we started on our journey with our son, but there are formulas designed to help children with medical needs such as difficulty digesting and unknown allergies.

Continue reading →