Whether you are a new parent or caregiver of a child with intellectual disabilities (ID), or are further along in your journey, you can probably recall a time when you felt alone and in need of some advice or guidance. Special Olympics understands this and aims to support families by providing information about intellectual disabilities, supportive opportunities within your community, and high-quality health education resources.
An important step you can take to provide support for your child with an intellectual disability or developmental delay, is to proactively partner with your child’s medical and educational teams to create a supportive plan of care. Understanding your child’s diagnosis and needs, takes time and is part of a continuous journey to create the most positive environment for your child to succeed. Below are some suggested strategies for how to identify and communicate with physicians, who can become key advocates for supporting your child’s healthy development.
Qualities of a good physician for your child:
- Accessible for communication outside of appointments
- Provides options for communication: email, messages through online medical chart, phone, real-time video chat
- Responds promptly to your requests
- Provides clear verbal and written instructions
- Asks for your opinion
- Creates a partnership in decision making
- Supportive, compassionate, and knowledgeable
- Provides timely copies of evaluations, referrals, and support letters
- Advocates for your child
- Collaborates with and refers to other specialists
- Connects with other team members such as: teachers, therapists, or other medical providers
Tips to improve communication with your child’s physician:
- Ask questions about your child’s condition
- Request written information about your child’s condition, with specific web links, books, handouts, or other resources
- Clarify what you do not understand
- Make a follow up appointment
- Bring a list of questions and concerns about your child, to discuss with your healthcare providers
- Ask for specific recommendations and a referral for intervention
- Keep a copy of all medical evaluations and recommendations
- Create a notebook or folder with all the dates of diagnosis, treatments and contact information for providers, and bring it with you when you go to an appointment
These strategies can be applied to all providers in your network and community who will be dedicated to your child’s health and well-being.
“As difficult as this moment may feel for you, I can assure you that love does indeed conquer all! I can encourage you, in the most difficult moments, to simply focus on loving your child. Reveling in the day-to-day accomplishments – happy smiles, rolling over, splashing in their bathwater, learning to crawl and walk and making tiny sounds or signs - because life experiences develop one’s sense of who they are. Therefore, I ask you to encourage and celebrate the many accomplishments your child achieves! Small achievements become large accomplishments as our children grow into understanding who they are. I encourage you to provide every opportunity for growth for your child. Please have high expectations of your child; in a positive, encouraging, and accountable manner. We should not expect less from our child because of their disability – it's important to recognize that they may not accomplish growth or success in the same manner as many do, but our differently abled child will still accomplish remarkable milestones and pursue life goals! In fact, our child may often work harder and more intently to accomplish milestones taken for granted by their peers.” Brenda, parent of Jared, a Special Olympics Missouri athlete.
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