Vaccination and Institutional Trust

Vaccination and Institutional Trust

I remember when vaccination wasn’t controversial. It feels like a long time ago. It’s unlikely things will change any time soon because people are no longer placing high levels of trust in institutions. There is a substantial amount of evidence people serving in the highest levels of government, both at the White House and Congress, aren’t being truthful. Even when they are, it’s difficult to take what they say at face value. It used to be that when someone took political office they set up a blind trust or sold anything that might be perceived as influencing their decision making. That’s no longer the case in every situation.

I say that to say this, I understand why it’s difficult to trust hospitals. Physicians of all kinds, especially Pediatricians, seem to follow the recommendations of large organizations. It’s difficult to trust these large health care organizations when we see scandals like the Epipen pricing scandal where the Mylan CEO who is accused of gouging is U.S. Senator Joe Manchin’s (D-W.V.) daughter. Fortunately, the scientific evidence to support vaccinations has been around a lot longer than recent history. When vaccinations were developed and these programs were first implemented, the institutions doing the research were worthy of our faith and trust.

Continue reading

Learning from the UK Referrendum

Learning from the UK Referrendum

It sounds so far away and irrelevant when you’re battling day-to-day with medical providers, medication schedules, feeding schedules, and more. What could we possibly learn from the UK referendum? Well, now that millions of people have signed a petition for a chance to vote again – this time for serious, a lot.

The two biggest complaints seem to be first, they voted in protest and not because they actually wanted to leave. Second, they would have voted differently if they understood the immediate repercussions resulting from their choice. Re-worded differently, they voted that way because of emotional reasons or because they didn’t fully understand the consequences of their actions.

Continue reading

You’re Not Alone

It’s been a rough week. There was so much violence and death reported on the news it’s difficult to even register the full gravity of it all. On top of that, loving parents on vacation with their son learned the hard way that, in Florida, deadly efficient predators lurk in water so shallow even adult fish would prefer not to swim there. Did I know that before this week? Yes, I did. Would I expect anyone else to know who doesn’t live in the areas these predators thrive? Absolutely not.

Next week we meet with therapists and a teacher from our state’s early intervention program to discuss our son’s progress and our goals for the next year. He was tested last week by neurology and the teacher. It was devastatingly obvious he’s behind. How far behind is difficult to discern. Neurology told us he’s performing between 18 and 24 months in general. The teacher gave no hints about what she thinks. We’ll find that out next week.

Continue reading

What Can I Do to Help?

What Can I Do to Help?

This is the number one question we hear from family members and friends. It doesn’t always come out explicitly and sometimes it’s not even clear. I can see it in their eyes. They want to help and they have no idea how. They feel powerless and it doesn’t feel good. It’s uncomfortable, confusing, and frustrating.

It makes it even more difficult that we don’t always have an answer. Feeding our son isn’t as straightforward as it is for most kids. If someone does watch our son for us we need to be back before it’s time for him to eat. Some aren’t comfortable watching him at all because they don’t understand what it means to have a feeding tube or how to handle an emergency.

Continue reading

Feeding Tubes and Swimming

Feeding Tubes and Swimming

It’s a common question. “My child has a surgically placed feeding tube. Can they go in the water?” To answer there’s some context required so it’s best to consult with your physician. This is especially true if the tube site is less than 6 months old. Assuming the tube site has completely healed from the surgery and the stoma is well established, the rest of the post applies to you.

If your child gets in the water and the water goes through his stoma it lands in his stomach which is the exact same place it would end up with any other child. There are plenty of places where swimming is simply a bad idea. Lakes can grow many different types of bacteria which can make you sick. If you’ve been swimming in a lake your whole life you’ve probably already been exposed to whatever is in it and it’s unlikely you’ll get sick. A child who has never swum there before might get very sick from that same bacteria.

Continue reading

Eligible for Government Assistance? Please Take it.

If you’re eligible for government assistance of any kind, you need to use it. I understand that some are embarrassed about needing the help. In reality, not taking the help you need puts you in a position where you’ll need even more help in the future. Allow me to explain.

Say you’re eligible for Medicaid but you would prefer not to sign up. You feel fine and have no obvious medical problems so you’d prefer not to fill out all of the paperwork and wait in the lines required to prove you’re eligible for medical assistance. Sounds logical, but the longer this goes on the more likely you are to have a health problem which goes undetected because you haven’t gone to the doctor. By the time you find out you need to watch your sugar you’ve gone past being pre-diabetic and you now need insulin to control your blood sugars. If you had known you were pre-diabetic years before you could have put off having full-blown diabetes for years.

Continue reading

No More Judgement

No matter what you do, people are going to judge you. It’s the culture we live in right now. There’s this overwhelming expectation that everyone needs to be perfect at everything they do.

  • Kids play sports? They have to win, and nothing less will do. If they don’t, something must be wrong with the coach.
  • Your kid watches TV? Well mine doesn’t, and I don’t think yours should either. You must be a bad parent.
  • Your kid doesn’t do well in school? Well it must be the teacher’s fault, because there certainly can’t be anything wrong with the child.
  • What do you mean your kid is struggling with health problems? Since I can’t tell they have health problems in the two minutes I’ve known them, they must be fine!

Continue reading

Ableism and its Impact on Our Children

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

The Difficulties of Breastfeeding, a Special Needs Perspective

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

%d bloggers like this: