It’s extremely common for children to have sleep difficulties. There are so many things that make the little ones too uncomfortable to sleep. Teething, growth spurts, and even learning new skills can tip the balance between a restful night’s sleep and a restless one. Unfortunately, sometimes for special needs kids there’s more complication than normal getting your child to rest. Further muddying the water, your child may not be able to communicate what’s wrong. What do you do? The best you can, and that’s really all there is to do.
Category Archives: Caregiver Tips & Tricks
Medical Misinformation
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.
Toxic Relationships Must Go
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.
Your Child Looks too Healthy to Have a Tube
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.
Three Signs You Need to Fire Your Child’s Home Nursing Agency
Great tips for those who are frequently battling with their home nurse.
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…
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ICD-9-CM Transition to ICD-10-CM and Why it’s Awesome
In ICD-9-CM, if your child has feeding difficulties or is labeled as failure to thrive (FTT) the code used for the purposes of insurance billing is, “…ICD-9-CM 783.3 Feeding difficulties and mismanagement.”(1) This seems at first glance to make sense, but if your child has a medical condition that is keeping them from gaining weight, it’s extremely hurtful to see the terms, “feeding,” and “mismanagement,” grouped together in their records. It doesn’t go unnoticed, and several mothers I’ve talked to have been emotionally upset by the code. It’s difficult to explain to them it’s just for insurance billing purposes when it’s part of their child’s official medical documentation.
Managing Your Stress, Part Three: New Normal
Getting settled into a new routine after a emergency or crisis is one of the hardest things I’ve had to handle as a mother of a special needs child. One of the tricky things about not having a diagnosis is that you never know if you’re looking at a new illness (virus, infection, etc.) or a new feature of the undiagnosed syndrome. It’s happened several times that the new problem has turned out to be another clue to the underlying syndrome and we’ve had to adjust what we’re doing to accommodate. So, that’s all well and good, but how do you do that?
Managing Your Stress, Part Two: Crisis
OK, so what do we do when we’re in a crisis situation? We need to have a plan ahead of time, because there isn’t any time for planning after the emergency begins. No one sits in the back of an ambulance, or in the ER thinking, “OK, lets make a crisis management plan!” First, we need a support person. Ideally this would be someone you trust completely and is competent enough in the basics of your child’s care to take care of them for an hour or two. At minimum, it can be a friend who would be willing to take the time to call you once a day, see how you’re doing, and remind you to eat. Ideally you would have a backup that’s probably closer to the latter than the former. It’s unlikely that your support person would become laid up at the same time your child is going through an emergency situation. Unfortunately, depending how many emergencies your child has on a regular basis it’s far from impossible.
Managing Your Stress, Part One: Crisis vs. New Normal
This post is part of a three day series about how to handle stress when you’re bouncing back and forth between crisis and calm. I hope you find it helpful. I would love to hear about things YOU are doing to manage your stress.
There are two situations mothers of special needs children find themselves in more often than we would like to admit. The first is crisis situations. Many, although not all, of these land us in the hospital with our already struggling child. Once there, we fight fiercely to protect them from catching something even worse than what brought them in in the first place and engage in a constant power struggle with the hospital staff to let our children sleep. The second is what I call the, “new normal.” This frequently, though not always, comes after a crisis. Something has changed in our child’s condition and it’s changed the way that they and we have to live our lives. Identifying which of these two situations you’re in is key to properly handling your stress level.
Struggling to Thrive 