We, as special needs parents, spend a lot of time fighting off illness. It’s difficult to explain to friends and family members what’s necessary to keep our kids well, and what they can do to help. I’ve listed a few common reasons special needs kids just can’t afford illness, as well as what friends and family can do to help in each case.
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.
At six months our son was just starting to lift his head. At sixteen months his arms were still too week to support crawling, despite being in occupational therapy (OT) for over a year and physical therapy (PT) for three months. We did tummy time. We tried every trick in the book recommended to us. With the help of OT and PT he’s not falling further behind, but he’s certainly not catching up either.
He struggles with what’s called Hypotonia, or low muscle tone. He’s much more flexible than you would expect a child to be. He can put his feet up by his ears without even straining and he’s well over a year old. This flexibility causes him to need additional strength to keep his muscles in place, and he can’t make progress on physical milestones by himself because he lacks the strength to lift the weight of his body and head without significant assistance. Thankfully, with help he does get stronger. However, if you left him to his own devices he doesn’t work on his physical milestones like you would expect. In fact, he doesn’t work on them at all.
Some tubie parents are fortunate to have understanding family and friends. The love and support that comes with this arrangement is beyond value. For most of us, that doesn’t seem to be the case. The vast majority of parents with tubies are repeatedly told how much better of a job others could do if they were in our position. There are many things said so awful I don’t feel comfortable sharing them. No one deserves to be treated like this, much less parents of a child with a serious medical condition.
Thought some of you moms (and dads) would enjoy this. Please share it with others that need a smile.
- Some sounds will wake you out of a dead sleep and will probably continue to do so for a long long time, if not the rest of your life. The high pitched beeping of a medical grade pump, for instance.
- When you have to give medication to a child without a feeding tube, or they have a belly full of gas. You won’t really wish they have a feeding tube, but you’ll think for at least a brief moment you would be able to help them a lot more if they did.
- The idea of dropping your child off at daycare is foreign to you. If you leave your child with anyone, they’ve gone through at least several days of training to make sure the caregiver isn’t going to cause an emergency room visit.
- You don’t wait more than an hour to be seen in the emergency room, because if it’s not something the doctor would be willing to call ahead for you can take care of it yourself at home.
- You already know what’s wrong with your child when you take them to the hospital, but the hospital is the only place that can do the things you need done fast enough to prevent your child from developing complications.
- It’s no longer surprising when someone implies you’re a bad parent. “Obvious,” solutions for your child’s complex medical problem seem to flow from everywhere. Clearly all of the therapists and specialists you’ve been seeing for years are incompetent and have no idea what they’re doing. They couldn’t have possibly suggested these, “obvious,” solutions when you first started seeing them. It’s not like your child’s medical professionals have experience with these types of problems or anything.
- You know immediately whether or not a doctor or resident has read your child’s chart as soon as they walk in the room. They’d look a lot more terrified if they had.
- If an elective admission has to be pushed from June to July you ask to be called if there are any cancellations in June or to take care of it in September.
- By the end of the year, you haven’t had to pay out of pocket for medical services for at least three months, and for some as many as eleven.
- People tell you they don’t think they could ever handle the things you’ve been through with your child’s medical problems. You look at them like they’re crazy, because you can’t imagine anyone doing anything differently. There’s way too much love in your heart for that little angel to let them suffer a minute more than necessary.
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.
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…
View original post 636 more words
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).
In my experience, when people look for growth opportunities they usually talk about things like traveling, training, or networking with a specific community of people. I’ve done all of these things, and they certainly do expand your horizons. For me, none of them have done nearly as much to grow me as a person as caring for our son with feeding difficulties.
After talking to other moms, I’ve come to understand it’s different to care for a child without health problems. Then, you’re balancing between how much attention is appropriate to give them versus how much independence you can gain for yourself to accomplish your tasks for that day. The balance is different for us. We know exactly how much attention our son needs, and most of it is spent making sure he’s fed and actively performing his assigned physical therapy exercises. I don’t think of it as less time for him is more time for me to do what I need to do. Less time for him is slower progress toward walking and crawling independently.
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.