Because of the fear and anxiety associated with the topic of illness, many people avoid conversations about the all-too-present reality of how physically vulnerable we are. — Tamara McClintock Greenberg Psy.D.
There can’t possibly be anything that will hurt a parent more than hearing that your child has an incurable illness like dysautonomia. For sure, they won’t need to get radiation therapy, which is often necessary for cancer patients. Staying away from sweets or having insulin injections practically forever is just for the diabetics as well. But the fact that a kid will most likely struggle with the chronic disease for as long as they live after the diagnosis can’t be comforting either.
The typical thoughts of parents who witness the symptoms in motion include “If only I can transfer their pain to me” and “I hope a miracle will happen and dissolve the illness.” Neither, of course, is plausible at the time of writing this blog. You may leave the treatment to the physicians and focus on helping the child through other ways instead.
- Never Doubt Your Kid’s Words Immediately
The most prominent fear of parents whose youngster has the disorder is that they might use their knowledge of dysautonomia to get out of unfavorable situations. In case you ask the child to clean their room, for instance, they may say that they’re dizzy or feeling unwell in general. Despite that, it doesn’t mean that the symptoms aren’t there.
When you live in the same house as your kiddo, you should know by now whether they’re capable of efficiently lying or not. If they are, you may scrutinize them further before believing they aren’t in great shape. Considering they don’t lie or are not good at it, however, then you shouldn’t draw conclusions about what they’re saying before they even finish talking.
Likewise, couples who have been together for some time organize the nuts and bolts of their lives in highly ritualized and interlocking steps that create stability and fluidity. — Katie Willard Virant MSW, JD, LCSW
- Ensure That They See TheDoctor On A Regular Basis
It is also essential for anyone with dysautonomia to get checkups with a specialist regularly. Even though it won’t be cheap, that’s the best way to understand the progression or regression of the syndrome.
- Maintain Your Composure
When kids go through puberty, they develop mannerisms and ideas that can make a parent happy or sad. It’s cool in case your kiddo is one definite cookie, to the point that the symptoms of the illness don’t faze them too much. But once they give in to their rebellious side and start talking back at you or sneaking out at night, you might lose your calmness before you know it.
Will your outburst help your kid? No. If anything, it may merely aggravate the situation as the children see how much effect it has on you. So stay level-headed to help your offspring better.
Sometimes the cause of a chronic illness/condition can be identified, but often no specific cause can be determined and nothing can explain why it happened. — Dan Mager MSW
- Consider Joining Support Groups
Taking care of a child with dysautonomia can’t be as straightforward as dealing with a regular kid. It may well be like stepping on eggshells in the beginning because there are things you can’t expect the patient to do, e.g., go to classes even with a terrible headache.
Joining a support group may help some moms and dads overcome this issue. The organization ideally consists of parents whose children have dysautonomia too. You may ask them questions and garner advice on how to help your youngster better.
- Subject YourselvesToFamily Counseling
Whether your child is six or 16 years old, you may speak with a counselor together and deal with the psychological aspect of the disease. The ups and downs that come with dysautonomia, after all, don’t affect the patients. While the latter feels its symptoms alone, knowing that you can’t alleviate their dilemma can be burdensome for parents. You might be concentrating too much on the ill kid as well, which may cause your other children to rebel or develop adverse feelings toward the entire family.
Through a group counseling session, you’ll be able to address all those issues. You can learn coping mechanisms for negativities as a family as well and become one another’s rock.