Chapter Resources

Every family’s journey through life is different, but having a child with medical complexities is off the chart different. Learn about the beliefs and values and how they viewed and approached the many forks in life’s road less traveled.

We all want an enviable life for ourselves and family, but what does that look like? How do we deal with the achievements of “neurotypical” children when ours cannot or do not reach that level, but love endures and creates its own enviable life.

How doth your family grow? Like a well-tended garden or a wilder version left to natures and societies intervening factors? Come explore what we experienced.

We are all lifelong learners and that goes for individuals with special needs and accommodations. This chapter explores the laws that govern PreK through post high school and the workforce readiness programs.

The primary care physician or internal medicine physician for adult patients coordinate all care and make referrals to the myriads of specialists an individual with medical complexities will see. They are your first order of both defense and offense in the medical interventions and treatments there will be.

The Palliative care team is essential for you to connect with ASAP as their support is invaluable in helping you navigate the medical system. They provide information and resources and actively listen so you can make the best decision for your loved one.

The Emergency Department is your first point of contact for hospital admissions. Expect the medical team to be conservative in treatment and always have the printed medical history with you to give to the doctors as it may be hard to locate in their medical record system.

Intensive Care Units are intense on many levels and provide care for individuals in a crisis situation. Unfortunately, this may be where your loved one will spend the most days at the hospital, but it is also where they will get the highest level of care.

Besides the PICU, it is likely you will also spend a lot of time with a specialist or two or three. For Aidan it was the Neurology Department for multiple anatomy and physiology medical issues. If everything goes well, time, medicines, and a good treatment plan will allow the symptoms to decrease and possibly end.

Medical complexities often require specialists like pediatric dentists and physiatrists or doctors who specialize in on the cusp treatments to help with neuromuscular control issues. Therapies are a must and they often cross over to allow the individual to reach up and achieve their potential abilities.

Advocacy is a constant action that we need to do each and everyday to allow everyone have a good life and achieve their potential. The different strategies are presented along with best practices to educate, build support and bring about change from a door barrier to policy regarding equal rights.

Everyone deserves to have opportunities to engage in activities that provide joy and adventures that they choose. Planning and accommodations have to be in place to make this happen as well as dedicated programs and staff that supports the individual.

Individuals with medical complexities require special care that can range from nurses to trained CPA’s to individuals you train to meet their daily needs, both medically, physically and cognitively. It is equally important to find individuals that go beyond the minimum required and develops a special relationship with them.

You are in it for the long haul and unless you care for yourself you cannot provide the care needed for your loved one. How you achieve this is a balancing act as we parents often put our family first. Remember to reach out for help and accept it when it comes to you.

It is essential that you have both a detailed contingency plan and all the legal and supportive documents to care for your child if you become incapacitated or die before they do. Oftentimes parents will set up a special needs trust and the letter of intent to guide support needs to be done before a crisis happens.

This chapter explores how our society views and deals with death and the way it has evolved over the centuries. You have choices in the type of funeral and legacy you create for them. Planning ahead takes the burden off others that will assume those tasks after you pass.

Parenting or caring for family with medical complexities can be lonely and isolating. But you are not alone and there are ways to connect with your people and support groups. It takes work but you can build a fulfilling life for your family.

Three pieces complete the tapestry that is Aidan’s enviable life. Thank you to those who helped with the completion of this book and an ask to keep helping those in need as “All Lives Matter.”