People often believe that having a child with disabilities somehow is a gift or blessing or responsibility only *you* can handle or were meant to have.

Disabled children are a financial nightmare.

They are often a frustrating series of recurrent and often feeble attempts at independence and waxing and waning progress.

They steal all of your time and it is just assumed and expected that the disabled’s needs always surpass the parents’.

Overall, caring for a disabled child is akin to being forced to keep a thankless money pit alive for no real gain or benefit. The ROI is absolutely not worth it.

Disabled children are not blessings; they are curses.

Edit: spelling

Edit Info: My daughter sustained a traumatic brain injury in her youth. In a lot of ways, it has kept her mentally at that age while simultaneously aging her body into that of a young adult woman.

She is incredibly accident-prone and gets several concussions per year because it doesn’t take much of a knock to the head to give her one. (Post-concussive syndrome.) She has never been diagnosed officially with “failure to thrive,” but she has been admitted to the hospital with that as the suspicion several times. It seems like she has some unknown mild form, but essentially she runs low on basically everything (fluids, electrolytes, glucose) *all* the time. It is frustrating because it is so unpredictable. For all of us.

She has always had very sensitive skin and eyes. The brain injury did not take her vision, but it interfered with her visual processing pretty significantly. She often prefers to close her eyes in a dark quiet room because she gets visually overwhelmed. There are days she cannot read at all and others she can see fairly well. A similar situation happens with sound with her; it’s like her brain just does not know to do with the information it is given.
Certain sounds will make my daughter lose her balance completely, get nauseous (even to the point of vomiting), get headaches, and in extreme cases (usually where she can “feel” the bass through the floor or where she cannot “ground” her feet in a moving car as a passenger), she won’t be able to walk and has been carried out of concerts before. I imagine what she experiences is very similar to how autistic sufferers get “sensory meltdowns.” She is a very picky eater because smells, tastes, and textures seem amplified to her, so if something is unpleasant; it’s not “just” unpleasant; she will have to spit it out.

My daughter has a significant gastrointestinal disorder called gastroparesis. It will never improve, and will eventually cause her to need a feeding tube. She is on a liquid diet roughly 90% or more of the time currently. We can sneak in applesauce, limited crackers, a child-size serving of Mandarin oranges, about a tablespoon or two of peanut or almond butter a day, a scoop or two of ice cream, and sometimes yogurt or pudding, but that’s about the extent of it. She likes baby food pouches. Even smoothies are hard for her to digest because of the plant fiber.

She is overall incredibly “sensitive.” She cannot be around chemicals. At all. She passes out very easily even when all of her nutrients are in order. If we are stuck in traffic, for example, and get behind a car with excessive exhaust- she will often pass out pretty instantly. She often needs her inhaler simultaneous to passing out, but she is passing out from tachycardia, which the inhaler increases, too. So she often tries to “tough through” the temporary inability to breathe because that displeasure usually lasts a shorter time than how crappy the inhaler makes her feel when she has to use it. I worry she may die of anaphylaxis someday for a similar refusal to use her Epi-pen. (Much worse by comparison than an inhaler.) She reacts so violently to cutting onions that her eyes have swollen shut and remained inflamed for days. She has urticaria, which basically is a catch all dermatological term applied to skin inflammation. It behaves in a somewhat auto-immune type way. Over 2 decades, the only true treatment that has ever worked is a course of prednisone.

She has had several types of seizures over her lifetime. The cause has never been identified or determined. I’ve seen her have a seizure when she’s turned and had the sunlight hit her “the wrong way.” Because of her sensory issues, public, or any, transportation is an incredible burden.

Her mental health care professionals have ultimately diagnosed my daughter with major depression disorder, C-PTSD, and generalized anxiety disorder. She despises medications and will do almost anything to avoid taking them, even if they’ll help her. She is constantly on edge, from how it is explained to me, but it’s “not her fault” because her brain kicks into survival/fight or flight mode several dozen times a day. No one really has figured out how to turn this “trigger” off. I know she tries to mitigate it – if she doesn’t pass out, she can often tough out a resting pulse in the 160’s and people won’t realize how ill she is until she’s out or having a seizure. But, nurses have told me that she has the ability to raise her own pulse, so it’s conflicting.

Heavy sedatives at high levels often do little to quell her hypervigilance or even make her sleep. She is prone to outbursts and improper/inappropriate emotional reactions. An example is that she laughs when she is afraid or uncomfortable. It’s like her wires are crossed and we don’t know how to fix them. (To her credit, she *is* very aware of this and she can explain to people that news of terrible things is indeed, not “funny” to her, but you can imagine the difficulties interacting with that.)

She has little to no impulse control, several complex learning disabilities, and moodiness that doctors don’t try to treat with medications.

She also has a slew of problems that can be summed up as “painful.” Her borderline failure to thrive likely caused hypotonia, osteoporosis, and contributed arthritis pain. That weakness translated to her spinal discs essentially collapsing between her vertebrae. She is not “injured enough” to be a surgical candidate, but she genuinely has a lot of pain from this. Her visual processing problems make physical things very taxing on her. She has poor proprioception and gets muscle spasms frequently, and several of her joints frequently dislocate. She sometimes would walk her Ssrvice Dog with her eyes closed, only opening them once to take a “snapshot” every 6-12 feet, and assure they were on the right track. It is incredibly difficult to explain my daughter’s disabilities and to get help with them.