As a mom to a nine year old daughter with multiple physical, cognitive and life-threatening medical needs, I feel like I have been through it all. But as I spend more time with other parents of children with special needs, I know I haven’t. Every experience, every child and every family is unique, which is why I am hesitant to ever offer advice. But I also believe that it is my interaction with these parents, as well as those involved in my child’s care, that has given me the strength to keep going, learn about new treatments and gain new perspectives.
If you are reading this webpage, you are most likely embarking on a journey with your child to a place you’ve never been before and aren’t quite sure that you want to go. When my daughter, Emily, was diagnosed as an infant with a rare metabolic disorder, I remember feeling like I had just been invited to become a member of an exclusive club that I really didn’t want to belong to. The good news it, you will not go it alone. Raising any child takes help from others and raising one with special circumstances can take a whole team of experts and volunteers to get you and your child where you need to be.
Choosing Your Circle
As a parent it is not easy to suddenly have the advice of others so intertwined in your child’s development. It can even be more difficult to sift through the varying types of therapies, strategies and treatments. With so many opinions coming from a variety of sources, you must choose those involved in your child’s care wisely. Our team, or as we call it, Circle of Support, is made up of family members, friends, social workers, therapists, teachers, classroom aides and medical specialists. Yours may be much smaller but there are two things I find imperative in choosing any Circle of Support member. The first is that each member must understand and agree with the priorities you have laid out for our child. The second is that as a member they must have a positive impact on the family as a whole.
With a child that had so many challenges, it was important to establish goals for our daughter early. Along with my daughter’s primary physician, we were able to prioritize her long list of needs. Once we had done that it made it easier for her doctors, therapists and teachers to determine how to best utilize their time with our daughter. For example, since Emily had serious eating and weight gain issues it didn’t make sense for her to be working on sound formation with a Speech Therapist without addressing her feeding issues first. Luckily, her Early Intervention Speech Therapist was also a trained Feeding Therapist and was happy to adjust the goals she had initially laid out for Emily.
Our daughter’s Early Intervention Physical Therapist also made adjustments in order to meet her overall objectives. Due to her medical condition, Emily had irregular sleep patterns in addition to multiple doctors’ appointments each week. At the same time, I felt it was important that she continue to see a Physical Therapist regularly to give her the best chance at proper muscular development. Her therapist realized that he could hardly impact her physical development if she wasn’t well rested and in her best state of health, so he was willing to adjust his schedule weekly around our erratic one.
The second thing I find important for anyone involved in your child’s care is that they have a positive impact on the family as whole. In some cases, such as Early Intervention Therapists who actually work in your home, a team member can almost become part of the family. It is important that you feel comfortable enough with them to speak openly and honestly about your child and her progress. In turn they must always be made to feel welcome to offer advice in a positive and encouraging manor. Once during a school conference Emily’s Kindergarten Teacher explained that while she was the most challenging child he had ever taught, he also felt privileged to be working with her and that her contributions to the classroom were numerous. Although years ago, these words still lift my spirits today.
You will also notice that some people and methods work better with your child than others. I discovered this when I took my daughter to a new Occupational Therapist when she was three. The therapist asked Emily to sit at a desk and manipulate the same blocks over and over again for an hour. By the end of the session my daughter was bored and frustrated and so was I. A few weeks later I enrolled Emily in an Aqua Therapy program that combined both physical and occupational therapy in a pool setting with other children. The therapists also invited my other daughter to join them in the water as their ‘assistant’. Both of my daughters have thrived in this fun, social and interactive environment while gaining valuable skills.
Over the years we have had Circle of Support members come and go out of our lives. My husband and I are constantly humbled by the number of people with a sincere interest in helping our daughter and family. We have much to thank them for and will never be able to repay all of those that play such critical roles in Emily’s life. They have all made their unique stamp on our lives, as I am certain she has made her imprint on theirs.