Parenting

Parenting and in particular the parenting of special needs children and adults is the parent's job. In speaking to more than a number of parents on the subject more often then not I hear them complain about the lack of long term commitment from teachers, medical professionals and aides. This just rubs me the wrong way. Don't get me wrong sometimes there are just so many new people in Eric's life that I think my job should be called Training Specialist and not Mom.

I think that it is fantastic that ordinary people take time out of their lives to learn about and help our children. We have a lot of aides who need the volunteer credit, even if it is a paying job with a non-profit to get into medical or nursing school. I really love these people, they learn quickly are usually great at the task at hand and then move on when it is time for medical school. If we get these people from a year or 2, I am extremely happy. The things that they learn while caring for Eric can then be transferred to other families and enhance their carers. But they are not his parents and are not meant to be in his life forever.

Then there are the heroic Special Needs Teachers that not only have to learn a whole lot of things about their students medical and emotional needs even before the education process can even start. Also, every year there seems to be more paperwork required for each student, think of the 504 Plans, Individual Education Plans, paperwork to prove that grant money is being spent within the terms of the grant. Accident reports if a child stumbles and the corrective action that will be taken in the future so the child learning to walk will not stumble again. Did I mention parents with unrealistic goals for their children. From the start of teaching special education to leaving the field average is 10 years. No they will not be there forever. Neither will the teachers of your healthy children.

As for the wonderful people who staff our Adult Day Care Programs, please be very nice to these people. The pay is lower than I would like to see it. The hours are long. Our young adults are sometimes very difficult to work with. If you have a chance schedule a day to shadow your adult child and see how the staff works with them. I am always very happy to see these caring people go back to school to further their carers wherever it takes them. They are not meant to be in our adult children's lives forever.

Ending on a note that no one wants to think about is what happens if you as the parent gets hurt or you can't do your job as a parent? Do you have a backup plan in place? Does your support coordinator have this in writing. If you have guardianship for your adult child, the courts must approve the plan. Talk to your lawyer about this. Your relatives might not be up to the task. Planning is a must.

Just remember that nothing is forever.

Exhusted

I have reached the point of exhaustion this week. I am at a place where I am so tired it is hard to fall asleep.  It is a place that I don't go to often, but none the less it is not a good place to be. Eric getting sick a lot has not left me time to recharge. This has left me fumbling all over the place.

I am trying not to do anything that I can really screw up. So no complicated knitting or writing patterns, knitting washcloths is about my speed this week. I am getting energy at odd times and just doing house work when the energy is there.  It is a good week to set freshly spun yarn, and spin art yarns. It might just be a bad week to label yarn or anything else.

John is being wonderful making his own dinner or bring dinner home for the both of us. I am so glad that he is my backup. I would be more tired, if that is possible if he were not here to help.

We are going through a lot of staff changes with Eric so I hope that I don't scare anyone off. This might be some of the pressure that I am feeling too. Well it is time to go set the next batch of yarn.

I Will be a Willow Tree

Sometimes I wonder why I bother to make plans at all. About 50% of my plans land in the blender. Take today for instance. I had planed to go to the knitting guild meeting today and hang out with some friends and maybe have lunch. So to that end I called and scheduled a nurse for today last Friday, because Eric is still home. I figured 6 days in advance was enough. Well 8:00 am came and went. We are suppose to wait a reasonable amount of time in case the nurse gets lost. By 8:30  still no nurse and they have 2 hours to find a replacement. So much for the guild meeting and lunch with friends.

So instead I went to the pantry and filled a bag of food for the annual stuff the Mayflower for the Tucson Community Food Bank that our local radio station 94.9MIXfm puts on. Let Eric watch some TV while I got ready. Negotiated with Eric what shows he wanted to watch before we dropped the food and check off. Yes we had to wait until Sesame Street was over.

Then it was getting Eric ready to go and all that that entails. Load Eric in the car and drive down to the drop off site. Then I had to explain that Eric wanted to make the donation of the food so I put it in his lap so the volunteer could take the bag of food from him and then they said thank you to Eric. I also took a moment to drop the check in the collection bucket.

Back home again and it was time for my lunch and then to put Eric down for a nap. Eric wanted company so I did some knitting. When he dozed off I did some pretty awesome tossing of junk into recycle. Then Eric would squeak and I would go back to his room,  knit some more until he dozed  and then it was back to cleaning.This went on for 4 hours this afternoon. But the net result is a cleaner section of the house. And enough magazines tossed to compress the recycle bin a little.

I also figured out what was causing Eric's bed to act all funny. Yes I fixed that too. I just love duck tape, I just need to get more of it. An darn if I was not at the hardware store just last night and walked right past it thinking that I had enough of it.

Eric's afternoon aide was late too. He showed up 25 minutes after the start of the shift and then tried to play the we need to fill out the time card in pencil routine, yes like I have never seen that done before and did not know he was going to erase the time he was here with the time he was suppose to be here. Pencil really who was he trying to kid? I wrote over his pencil in black ink.

I can truly say that I am very tired and that it was a long day. Other than the disappointment of not being able to go out or have the energy to take pictures for my on line shop the day did turn out all right.

Now if Eric would only sleep through the night tonight.