Looking up a phone number to make a phone call is way beyond Joey’s ability. He would not be able to call to make an appointment. And if he could call, he would not be able to verbalize to the person on the other end what his needs were. To formulate his needs into words is not possible. To report to someone that he is being mistreated isn’t even on his radar screen. Although he is able to talk (in phrases and slowly – if he can think it first), the ability to ask someone how to get something he needs is not as easy as it sounds. He needs us to care for his needs, to open our mouths, and get him what he needs. His is not a life of wants, but needs.
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, you know what you know, and you must be firm in demanding what you need or want for your loved one. Knowing what our roles and responsibilities are is also helpful – knowing who will make calls, keep records, etc. Keeping a notebook or 3 ring-binder, writing notes to teachers or medical personnel in it, letting others add to it, and reading and reviewing what has been written makes for better communication, providing everyone uses it!
Having also helped in the care of our parents, we found that becoming experts on their care was different. We hadn’t “grown into” their issues as we had with Joey from birth, so we had to rely on the help and advice of others to help us make decisions in the best interest of each parent. In addition, if another person was in charge of that parent’s care, we voiced opinions but supported the final decision of the primary caregiver, whose responsibility was to listen to advice and concerns but do what was best even if others were critical of the decision. We trusted that the caregiver was truly interested in the person’s care, not money, material goods, or some other interest that would interfere with giving and getting the best possible care.
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 for the loved one in your care. Depending on your loved one’s ability to think normally, she or he will appreciate your efforts to learn about specific needs. For those lacking in the ability to think normally, you are still ahead of them as you learn to deal with them in many ways, and most importantly, that you are doing what’s right.
“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.” – Proverbs 31:8-9
If we don’t do it, who will?