Childhood Chronic Disease Prevention & Management
It can be a difficult thing to relate to a friend or family member who is a parent of a child with special needs or chronic disease. As a parent, managing the needs of your child can be taxing and a constant, 24/7 job. While some conditions and diagnoses happen at birth or even before, there are some childhood chronic illnesses that can be prevented. It is important to understand what those measures of prevention are and how to employ them for yourself and your family. On the other hand, when your child has a chronic illness, it comes down to management - making sure you have access to the right resources to aid you in your journey in caregiving. Tilton’s Therapy for Tots is committed to providing parents with the information and resources to be able to make knowledgeable decisions about their child’s care, and have a contact and resource in the team of therapists working with your kids.
Some chronic diseases like diabetes type II can be prevented during childhood. As a part of any child’s life, healthy patterns of behavior are the most important aspect of ensuring they have the best chance at preventing a chronic illness. Getting proper nutrition, exercise, and reducing stress are good first steps to maintain and develop a routine around. Other chronic diseases like asthma or epilepsy require a bit more focus and specified care. Parents have to constantly be aware of their child’s surroundings and access to medical care or medicine. Schools often have the resources to be able to step in (in case of emergency), but it is always important to be conscious of these things.
Helping family members and close friends to understand the complexity of childhood chronic illness may help reduce anxiety or stress in group situations. Chronic disease is something that is generally prolonged beyond months of time, and is rarely cured. A diagnosis of this type typically means that it prevents the child from engaging in regular activities in some way, like school or schoolwork, or that they require additional assistance from health professionals, medication, or specialized tools in order for them to reach their maximum potential. Chronic illnesses are stressful to a higher degree than acute illness for both the child and their parents or family, both physically and psychologically.
Coping mechanisms for children with chronic illness extends beyond the child and applies to anyone in their “inner circle” or extended family. It can be difficult and alienating for many parents, especially new parents of a child with a developmental disability or chronic illness. Often, friends and family detach as their own coping mechanism, but that usually leaves parents or caregivers feeling alone with a complicated, daily task to face. Challenges arise in prevention of other chronic disease involving nutrition, physical activity, and stress - which create a larger concern in cases of children with limited mobility or neurological function. It is true that general advice can be helpful, but in truth, every child is unique and every situation is unique in terms of need.
Parents of kids with special needs inherently become caregivers and learn many different methods of therapy as their child receives treatment. It is important in that role that parents are vocal and advocate for their child in the way they choose. You know your child’s needs better than anyone else as their parent, and asserting your opinion is not only helpful, but it is necessary for your child to receive the best possible care and reach their highest potential. On the other hand, constantly managing the care of someone else is exhausting and taxing to you physically, mentally, and emotionally. One of the most important aspects of coping and maintaining your child’s health is maintaining your own. Much like the airplane instructional lesson we all know too well - put on your own mask before assisting with another. Make sure your own health and happiness are tended to, and do not feel guilty about taking time for yourself when it is needed. Being a parent is already a 24/7 job without additional responsibility, so always afford yourself some self-care to make sure you’re able to care for your child at your best.
One of the most powerful things you can do as a caregiver is to inspire hope and positivity in your care. As your team of health professionals and therapists will be your guide through treatment and offer their best advice for your specific circumstances, your outlook can provide a much needed breath of fresh air for your family - and your child. Allowing them to do the things that make them feel good or feel freedom will help you stay positive as well. While healing takes time and progress sometimes happens slower than many of us would like, every day allows you to grow together. Childhood chronic illness may be unexpected in some cases, but it doesn’t reduce the amount of joy you can experience with your child.
As a respite from the normal routine, retreats can help families connect with others in similar circumstances and provide a break of fun from the everyday routine. Deliver the Dream is an organization which offers family retreats to allow for just that kind of connection.
“Deliver the Dream helps families undergoing chronic illness or crisis to regain strength, mend spirits, and become families and kids again. By participating in one of our monthly retreats, families living with an illness or coping with other family crisis, can relax, enjoy time together, form new friendships, and create support networks with other families struggling with the same illness or similar crisis. Providing highly effective programs designed to assist the entire family unit, Deliver the Dream helps meet a vital need for families experiencing life-threatening disease, debilitating illness, and other family trauma.”
They offer retreats each month, and while families are required to provide their own transportation to the retreat, the stay in its entirety is free for families. You can check out a sample retreat agenda here.
If you or a loved one are coping with childhood chronic illness, reach out to get support from others, and remember that you are not alone! Contact Tilton’s Therapy for Tots to learn more about our patient registration process or to get started with one of our amazing therapists.
