the program

My son was accepted to a program at the beginning of last summer. The program is not necessarily designed for kids with significant mental impairments, but we qualified and I thought we could use a bit of assistance.

The program is designed to offer parents some support for behaviors that they are dealing with in their adolescents and offers the children some mentoring time so that they can learn some skills. It's main point is to help eliminate the need for residential treatment. Some of the benefits were supposed to be respite, transportation, community involvement, volunteering and some flex funds.

I had to choose a provider who handles all the bureaucracy. This person fills out reports, coordinates stuff and offers support to the family. They are supposed to organized meetings and provide some volunteering opportunities.

To make a very long story that spans 8 months short, our person sucked. Initially I thought that this person was simply overworked and was dealing with some transitions due to some massive reogranization in her department. I gave her the benefit of the doubt.

She never really got it. I specifically picked her because of her background in dealing with kids with Fetal Alcohol Spectrum Disorder. Every time we would discuss some issue she would inevitably say, "I know, that's typical in FAS kids". After hearing this about 67 times I wanted to stand up and scream "You have no idea! You have never spent 24 hours a day with FAS. You have not mothered a FAS child with Moderate Mentally handicapped status. Shut up!"

Last fall the program for us began to fall apart. I started pushing for things that the program was suppose to provide. I kept pushing for an appropriate respite provider. I continued to ask about the volunteering opportunities. I wouldn't let the community involvement go. The monthly family meetings were not on the schedule, phone calls began to not get returned, we were not informed of stuff. We applied for a small security system with our flex funds and I could not get an answer about if they were approved. Lo and behold the boxes showed up on our doorstep.

Last month we had a meeting and we found out that because he had not made progress in his mentoring area that he was going to be discharged from the program. We knew he would never make progress. We knew he would not be able to look up a library book in the computer system and check it out on his own. We knew he would never be able to put together a recipe, make a list, hop for the items at the store and pay for them alone. We knew he would not be able to budget for an outfit and go to the mall, find one that fits the budget, make sure it is matching and then pay for it alone. We knew that. The program intake person agreed that this was more for us than for the typical child. We knew that it would give Dustin some much needed time away from home and us the same. We knew it would make him feel special.

His mentor started out with high expectations. After about 6 visits he began to really understand Dustin's limitations. He made it as fun for Dustin as the program would allow and still meet some standards. He understood what we dealt with on a daily basis.

The fact that services were being terminated due to him not making progress did not sit well with me. I spoke to people. I found information about the program. I spoke with someone who started the program here in our county. I pulled out the meeting agendas I had never really looked at and found that she was saying she had been making contacts. I found a lot of discrepancies. I found out that key paperwork was not done in the right manner. I tried to contact the coordinator since the meeting. In three weeks, 8 phone calls went unreturned.

This week I became fed up. I put in a call to the supervisor. We chatted. I agreed that I let this go on for far too long. I explained that I had given her the benefit of the doubt. I explained that coming from a foster parent background we were used to promises not being met. She asked if we wanted to program to continue. I explained that we really didn't. I was ready to wash my hands of all of it. I wanted her to make this easier and more beneficial for the next family.

Why does everything have to be so pickin' hard! Can I please just be given something that I should be entitled to without having to advocate for it? I did find out that re-entry into the program is fairly painless so we may look into that if we find we need to in the near future . . . with another coordinator of course.