Looking up a phone number to make a phone call is beyond Joey’s ability. So is making a phone appointment, reporting to someone if he’d been mistreated, or asking someone to get something he needs. We need to care for him and open our mouths to get him what he needs. We are his advocate.
As parents, we feel as if we know our son better than any doctor, therapist, or teacher; but we’ve always listened to and appreciated the help and support they’ve given. At times, however we must be firm in demanding what is needed or wanted for our loved one.
Here are a few things we’ve found helpful over the past 30+ years:
- We need to know our roles and responsibilities in this care giving capacity – who will make calls, keep records, etc.
- Keep a notebook or 3 ring-binder, writing notes to teachers or medical personnel, letting others add to it, and reading and reviewing what has been written makes for better communication, providing everyone uses it!
- If you are family or friends of one with special needs, but not the primary caregiver – voice opinions but support final decisions if you are NOT the primary caregiver – as it their responsibility is to listen to advice and concerns and then choose what is best even if others were critical of the decision. It is a tough balance, but needed.
- Read all you can to become educated on health, mental, physical, spiritual, and emotional issues.
- Ask questions, seek agencies and organizations that will provide what’s needed, and keep pursuing until you find and receive the best care possible for the loved one in your care. Depending on your loved one’s ability to think and act clearly, she or he will appreciate your efforts to learn about specific needs. For those lacking in the ability to think clearly and normally, you are so necessary in the equation of the care, and most importantly, you will know that what you are doing is what is right for them.
Proverbs 31:8-9, “Open your mouth for the dumb, for the rights of the unfortunate. Open your mouth, judge righteously, and defend the rights of the afflicted and needy.”
If we don’t do it, who will?