What roles do you play in your child's life?
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All parents play many roles in their children’s lives, from chauffeur to psychologist. But parenting a child who has disabilities often involves even more. Here are some examples:
- Translator – Does your child struggle with communication? You may find yourself translating at the playground or at the grocery store.
- CSE (Committee on Special Education) team member – You are an important contributor to the development of your child’s IEP (Individualized Education Program) and advocate at CSE meetings for your child’s educational needs.
- Nurse and medical advocate – If your child has complex medical needs, you may provide daily medical care for your child, monitor medicines and equipment, and follow up on doctor appointments, among many other tasks.
- Representative payee – If your child can’t make important financial decisions, you may elect to be your child’s rep payee and therefore are responsible for managing your child’s money and benefits.
- Self-Direction team member – Not only do you help develop a budget and plan that honors and supports your child’s interests and quality of life, but you may also help to hire, schedule, train, and fire people who work with your child.
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"How do I take care of myself?"
Strategies you can use today
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- Meditate – Mediation is free, can be done anywhere at any time, and is a proven way to reduce stress.
- Breathe deeply – Do you experience frustration, anger, or anxiety? Breathing deeply helps you to pause and calm down so you can better deal with whatever is happening.
- Reach out – Leaning on the people in your support system is an effective way to reduce stress. We all need to vent, hear a friendly voice, or escape the responsibility of caregiving for a while.
- Exercise – Did you know that as a caregiver, you are prone to depression and heart disease? Getting up and moving is a great way to burn off stress and improve overall health.
- Laugh – Noticing funny moments in caregiving situations helps lighten the mood and reduces stress for both you and your child.
- Listen to music – Music boosts mood, lowers blood pressure, and reduces anxiety.
- Be grateful – Studies show that practicing gratitude can make you happier, lower stress, protect you from depression, improve sleep, and boost your immune system.
- Accept that you can’t control everything – Accept that you can only do your best to help your child have the best quality of life possible. If negative things happen despite all your efforts, remind yourself that it’s not because you didn’t try hard enough.
- Stay positive – To lower stress, work on reducing the amount and intensity of negative self talk while increasing positive self talk.
- Do something fun – Taking regular breaks and getting time for yourself is a key to managing caregiver stress. Even if you can only get away for 5 minutes at a time, use it to do something you enjoy.
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Meeting tips for busy parents
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Playing all of these roles requires meeting with teachers and school officials, health care providers, benefit providers, self-direction brokers, fiscal intermediaries, and planning teams. How can you best represent your child and be an effective meeting participant?
- Talk to your child before the meeting. Get a sense for what your child wants and needs in this aspect of their lives.
- Prepare notes before the meeting. What specifically do you want to discuss?
- Prepare questions before the meeting.
- Prepare an action item list to keep track of what you need to do later.
- Be on time. It shows respect for other people’s time and effort to meet with you.
- If communication has been difficult, follow up with an email or letter summarizing what you observed to be the main points of the meeting.
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Parent perspective on juggling roles
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Aaronette is a single mother from Rochester who works hard and dreams big for her family. She epitomizes what it means to juggle roles while parenting a child with a disability and caring for her other three children as well. According to Aaronette, her many roles at home include: single parent, accountant, entertainer, on-call doctor, advocate, homework helper, and chauffeur. She is focused on saving money so that she can move her family from a tight, one-bedroom apartment to a four-bedroom house. She is also working towards sending her children to private school.
Aaronette works full time as a Certified Nursing Assistant and works part time as a Student Behavior Assistant. She is also working towards a Masters degree in Social Work with an eye towards a future Law degree. “I feel there’s a great need for minorities to study law and get into the field. I am currently fighting for custody of one of my children and this drives my passion for the law.”
Aaronette attributes her drive to a deeply spiritual life. “I get up every day between 3:30 and 5:00am and take time for myself to pray and meditate. I pray a lot.”
Aaronette’s day ends at 10:30pm. “My days are long, but I do it all for my children. I am my kids’ biggest advocate.”
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Maintaining Caregiver Wellness, Starbridge webinar recording
Support for Parents of Kids with Special Needs
Special needs parenting: Balancing work and your child
Parenting Children with Special Needs magazine
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