Parents of children with developmental disabilities rarely get a break. Sometimes, it is not even possible to have a child watched for a couple of hours while shopping, taking care of your own health, seeing to the needs of other children, or running household errands.
As a practitioner who cares for patients with special needs, I often find myself with no one to care for my practice, when I’m attending a meeting or taking a rare vacation. The wedding of a dear friend in California recently highlighted this issue. Patients still get fevers, rashes, diarrhea and even seizures. Medications may not be working, or causing untoward side effects. Parents from all over continue to experience the frustration of dealing with the autism epidemic as it emerges in their part of the world.
Acute illness can be addressed locally by pediatricians, hospital emergency rooms, or urgent care centers. The main difficulty is that doctors are not trained in special needs care. Although they may be able to correctly diagnose and treat an ear infection, they are usually way too quick to prescribe antibiotics or fail to perform appropriate laboratory testing. With the increasing popularity of group practices, continuity of care is compromised. Often, children go from one doctor (or nurse practitioner) to another, further increasing confusion, and rarely getting to the underlying problem(s).
The Child Development Center of America
It would not be possible to keep up with all of the patients’ problems if it were not for a digital connection and web communication. Many mornings start with a picture of poop or an unusual skin lesion. It may not be as precise as touching and feeling the actual patient, but I have been able to handle a multitude of problems because of the Internet.
More importantly, I enjoy a great staff, led by our practice administrator Karen Vossen, herself the parent of two children with a diversity of medical problems, including autism. Ashly, at the front desk, speaks fluent Spanish, which is a must in such a diverse South Florida population. Likewise, Isabella, who interacts with the children, speaks additional foreign languages. Lisa, who handles the books (among her other duties), has four boys, including one who is doing great with his ASD. Leilani, our newest member, has experience with autistic children and hopes to become a speech therapist.
Most assuredly, I have a great family who understands my life’s passion. I am encouraged by my beautiful and patient wife, Jacqueline. She is the person who mused me into this amazing journey and constantly reminds me that my physical and mental health matter, as well.
First, in times of extreme stress and exhaustion, take a long, deep breath and congratulate yourselves on the ability to deal with so much constant pressure. We are all doing the best that we can for the children. Let’s not forget that maintaining our own wellbeing is paramount to assisting others.
Recharging the batteries by exercising, personal pampering, date nights and hobbies that take our focus elsewhere, even if only for a brief period, is a necessity.
Depending on the degree of a family member’s difficulties, respite care may be essential. In some states, the National Respite Network may be able to provide some necessary assistance.
The Autism Society and local chapters may provide a great source of support. Joining such networks can be especially helpful for parents of newly diagnosed children, letting families know that they are not alone in this journey. Local organizations, such as your state’s Developmental Disabilities Council or Family Services Agency (Broward 211 in Florida, e.g.), may be a useful choice.
Finally, try to find a good Special Needs practitioner and stay away from Dr. Google.
Although it’s not exactly the same problem, the challenge of finding help in this age of an increasing number of developmentally demanding children, complicated by a paucity of available resources, is shared by parents and professionals, alike.