As the parent you set the tone for your child and your child’s treatment whether it be in a medical, educational, or extracurricular setting. This is not so different from typical parenting, but it is more complex and demanding. The more readily you accept and realize that you are in the driver’s seat and the ultimate decision maker, the better equipped you will be for this journey.
Advocating for your Child with Cerebral Palsy
First, one caution: don’t push yourself and expect more from yourself than you can manage. This is particularly important to remember in the beginning as you are working through so many different issues and feelings, and trying to find your own equilibrium. In fact, in the beginning it’s usually best to take your time and not do much to change the status quo until you are able to find your own bearings. Over time, you will begin to see what is working well and what could be improved in your child’s care.
You may have case managers as part of an early intervention program, and if you are lucky you will have the same one for a couple of years. But once you get your bearings, you will become THE ultimate case manager. I feel that it is important to not hand over the wheel or hope that someone will come along and be in charge for you. If you choose to surrender your power whether it be to a therapist, doctor, teacher, or other professional, you will be allowing your child to be guided by their experience and vision of what they think is best for your child. No matter what the educational background or intention of the person in front of you, he/she will come replete with biases and agendas which may or may not be conscious to him/her and may or may not work for your child. As the child’s interested parent who has spent the most time with your child, you have the best chance of making final decisions about how to navigate your child’s path.
Regardless of your personal situation taking charge of your child’s program can feel very daunting and further complicated by other demands and conditions in your home and work environments. Just remember that you have the right to say that you need time to consider a particular doctor’s advice, a suggested program or therapy, and/or how you plan to approach addressing your child’s needs. I have found it is helpful to determine what and where flexibility may lie in our schedule, financial resources, and personal demands, in order to begin to successfully structure (and then tweak) Maya’s schedule and meeting her special needs in conjunction with other areas of our life.
In our case, I found that I needed to stop working after she was born in order to dedicate and focus my efforts on figuring some of these pieces out. We were fortunate to be able to make this change but this is not always a possibility or perhaps a desire for some families. My suggestion would be to set aside some time to being an advocate; time when you can think about your child uninterrupted and quietly. It may be only a few moments once a week. It can even be time for you to therapeutically write about what you see as working or not working for yourself, your child, your family, your marriage etc. You can clarify what may be draining your energy unnecessarily and what you need further resources or assistance figuring out. The more balance you can create in your home and within yourself, the more energy you will have to help your child. Having specific goals (i.e find a new neurologist, or daycare program) or areas of focus will help you manage your time and energy more efficiently.
Your first concern will be to learn about your own child and what she needs. At first, we figured out what Maya needed by learning about what did not work for her. Do not think you have to know what you are doing right away. Just speak up when people are using words or jargon that you do not understand. Over time, you will learn about the programs that exist to help your child access services, the types of therapies available, and the limits of your insurance coverage and your state’s educational and social service offerings. You will become the decision maker as it relates to how often your child receives therapy, what type of therapy she will receive, who will be working with her, how long the therapy lasts, how she is approached by professionals, and at what level she may be able to participate. This is why I believe it is important to partner with people you trust and respect (and vice versa) to guide you. If you don’t, you will find yourself in perpetual conflict with them or inner turmoil within yourself.
Each person will come to you with a background of various educational, professional, interpersonal, and intellectual strengths and weaknesses. No one will have “perfect” answers and as parents we don’t either, so don’t expect everyone to agree with you. It is important as the parent to also know when to listen and follow the advice of the professionals around you. I like to look for a professional who has years of experience under his/her belt, a good analytical mind and an open heart. I want someone who is not afraid to take a stand with me but who also respects when I take one and will listen with some humility at my point of view. At times my intuition as Maya’s mother has led me to stand strong and forge my own path, hoping that the professional I challenged would stay as a working partner. It’s ok not to agree on everything with every professional. Just know that it is within your capability to strike a balance and find your voice.
Once you determine what your child needs, prepare yourself for her needs to continue to change. You will get accustomed to this rhythm of monitoring your child, her schedule, the effectiveness of therapies, the people working with her, and how this all is working for your child and family. When something is not working you may find that you have to cultivate inner resources you did not know were even available to you. People may surprise you when you step into your power as an advocate. You may irritate someone because they feel you are questioning their expertise, or your input may cause them to have to do more work when they do not want to or they feel overwhelmed. Whatever the case may be, remember to be respectful but do not hide your feelings, concerns, or beliefs. It may be that what your are noticing or are standing for will lead to opening new possibilities for your child.
Do you want to start your own petition for change? Visit change.org and see how change starts with one person’s passion and idea for something better.
Advocating in Educational Settings
The Problem with Predictions About our Children
We believe in helping Maya reach her greatest potentials whatever they may be. We have worked to emotionally loosen our grip on the timeline of her development (one of the greatest challenges parents face), and we have become wise to the importance of knowing and addressing the biases of her therapeutic and educational team. We avoid predictions both the ones that make our hearts beat with excitement, and the ones that may undermine her potential. This doesn’t mean we don’t have hopes, dreams, and goals. We need those! However, we are careful about how our feelings and the feelings of her developmental team may impact how much Maya is pushed or perhaps how she is held back from realizing her potential. Either extreme may discourage our children’s progress. As the parent we have the tough job of setting the tone and helping to create a positive balance that keeps our children encouraged and moving toward their unknown potential. Maxinne Daly writes at BeingMaxinne and wrote an excellent blog post “The CSE Meeting: Just because it’s said doesn’t mean it’s true”. It illustrates her personal experience at one of her daughter’s educational meeting. One therapist’s words and thinking inspired her to take the reigns to ensure her daughter would be encouraged to reach her potential.
Future blog posts will include:
- Advocating in a medical and therapeutic setting
- Advocating in extracurricular programs
- Advocating in care settings
- Public access and accessibility
- Being a working parent and being an advocate
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