I have a love hate relationship with our son being undiagnosed. On one hand it allows me to be confident whatever he’s struggling with is not on the list of common issues with a poor prognosis. On the other, there’s no specific medical term to tell people when they ask why he has a feeding tube, low muscle tone, and random spells of fever for no obvious reason. I have met other mothers who have children with similar problems in online support groups, but most people have never heard of the combination of symptoms we’re dealing with.
Everyone’s experience is slightly different. Expect there to be some variation between your experiences and mine. Please, do not take any information in this post as medical advice. Any suggestions are simply that. Please do not take anything written here as reason to go against orders of your child’s doctor or nurse.
Before you leave home, I recommend taking the following with you:
- Any medical supplies your child may need in case of an emergency on the way to the hospital.
- Two days worth of clothes, and anything else you want to bring to stay the night. If there’s any concern about whether or not your child is developing an infection they may not discharge you after the first night.
- A can of formula if your child is on something uncommon. If you can’t walk into your local grocery store and buy it, the hospital may not have it either.
- Familiar cups / bottles / etc.
When you arrive at the hospital you’ll sign in and be invited to have a seat in the waiting room. The time of your surgery depends upon the age of your child. The youngest go in earliest in the morning. They’ll call you back when they’re ready to start with the paperwork and introductions.
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!
I love this! It’s so well explained. I’m frequently in this situation with my son since he mostly struggles with eating and gaining weight. It’s not obvious to strangers he has a feeding tube, and his therapy has significantly lessened the harmful effects of his hypotonia.
Special Needs parents often get many comments about why their children “look” fine. Here is my answer to why that is for my children and many others.
In response to the recent flurry of discussion around how to keep our special needs children well, one of the moms in our support group graciously agreed to donate printable signs for medically fragile children. I asked for a name to credit, and the creator generously declined.
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.
There are five stages of grief in the Kübler-Ross model. I’ve sourced the stages from Wikipedia.org and shortened them where appropriate.
- Denial — The first reactions is denial. In this stage individuals believe the diagnosis is somehow mistaken, and cling to a false, preferable reality.
- Anger — When the individual recognizes that denial cannot continue, it becomes frustrated, especially at proximate individuals. Certain psychological responses of a person undergoing this phase would be: “Why me? It’s not fair!”; “How can this happen to me?”; ‘”Who is to blame?”; “Why would this happen?”.
- Bargaining — The third stage involves the hope that the individual can avoid a cause of grief. Usually, the negotiation for an extended life is made in exchange for a reformed lifestyle. Other times, they will use anything valuable against another human agency to extend or prolong the life. People facing less serious trauma can bargain or seek compromise.
- Depression — “I’m so sad, why bother with anything?” […] During the fourth stage, the individual becomes saddened by the mathematical probability of death. In this state, the individual may become silent, refuse visitors and spend much of the time mournful and sullen.
- Acceptance — “It’s going to be okay.”; “I can’t fight it, I may as well prepare for it.”; “Nothing is impossible.” In this last stage, individuals embrace mortality or inevitable future […] this state […] typically comes with a calm, retrospective view for the individual, and a stable condition of emotions.
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).
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).