Not okay

Today we tried a new respite care provider who actually is available during the day.
For the uninitiated, respite care is a service where grant money is given for families of children with disabilities, for the purpose of giving respite. The provider can be used to watch and care for the child while her parents go out for a date or errands, or just do work at home. The general idea behind it is that these families are in need of a break, and usually are unable to find suitable babysitters, and often don't have enough money to pay for one anyway.
We have more of the former problem, as our daughter, who is autistic, also has feeding problems. When she was an infant, we struggled every day to get her to drink more than 2 ounces of formula or breast milk at a time. In fact, I was unable to provide much milk myself, likely because of the weakness of her sucking. As a result, she also slept very little, and was quite fussy. When she was just over one year old, she was at the 3rd percentile for weight, at about 17 pounds. She became sick with a cold, which developed into an ear infection, and she refused to take any food or drink. She dropped down to just under 16 pounds, and we put her into the hospital. She regained strength and a little weight, but they recommended that we put in a g-tube: a tube directly through her skin into her stomach. We were horrified at the idea of our baby having surgery, and declined, so they taught us how to insert an NG tube through her nose and down to her stomach, which we could do whenever she didn't take in enough by mouth.
We got home from the hospital, hopeful that everything would be fine. It soon became clear that the NG tube would be much more damaging to all three of us emotionally, as it was needed every day, and she screamed and writhed throughout the insertion and feeding, vomiting afterwards. Four days after coming home, we took her back to the hospital, so that they could give her the g-tube.
We clung to each other, crying, as they took her from us, limp from the anesthesia, so they could put that hole in her belly.
A year and a half later, she is at about 32 pounds and 38 inches tall, 75th percentile for weight and for height.
They did numerous tests at the hospital, some of which were pretty awful. What was determined was that she had acid reflux, which could be helped with Zantac; that she aspirated very thin liquids, which means that she was sometimes taking what she was drinking into her lungs; that she had oromotor dysfunction, meaning she had trouble safely moving food around in her mouth, causing her to gag; that she had dysphagia, which means difficulty swallowing. So, in a nutshell, eating for her was a minefield of unpleasant experiences which usually led to projectile vomiting. No wonder she didn't want to eat!
Months later, we also figured out that she is autistic, which means that some food textures, temperatures and tastes are intolerable because of her sensory integration problems.
What this means is that anyone who takes care of Grace has to be able to at least be able to work with the g-tube, and hopefully feel comfortable counting the calories of the limited foods she actually takes in by mouth, and then be able to calculate the calories needed by the tube. This means Courtney B. Teen down the street is not a viable candidate for babysitter.
We have interviewed and used several providers from a local service, who are all certified in CPR, etc., and who have a variety of backgrounds in disability work. Some of these people have degrees in psychology, social work, education. They are mostly employed during the day at regular jobs, and make themselves available for respite care evenings and weekends. We discovered the one that came today, and were delighted that she was available during some days, as that is a time more helpful to us.
I arrived home early from my concert (hubby went to a book sale in Bloomington), and found Grace strapped into her stroller in front of Sesame Street. We use her stroller as a sort of mobile high chair--we can prevent her from meandering too much while her feeding tube is in use, and thereby reduce the chances of the tube being yanked out. However, we do not use the stroller as a restraining device in her own living room when she is not being fed. The provider said that she had been concerned for Grace's safety. Grace has been seeking sensory input with her feet by kicking at the TiVo and other video equipment under the TV, and she has been able to dislodge the shelf and knock this equipment off a number of times (without injury). We are not happy with this treatment of property, but we believe she is more important than our TiVo. When a spill occurs, she is gently moved away and scolded. We want her to get her sensory input, and we want her to be safe, so we are going to get a new entertainment center with the shelves up high, and experiment with activities that give her the input. We are NOT EVER going to restrain her to prevent sensory activities. I know this woman thought she was acting in Grace's best interest, but we are both really upset by what happened. Fortunately it was a relatively brief time of restraint--about half an hour--and Grace seems to be unaffected. We, however, are having second thoughts about ever leaving her in the care of someone who does the work for pay. What other things might happen while we are gadding about? It brings to mind the rape and subsequent pregnancy of a local quadraplegic woman by her home health aide. I'm terrified for my daughter and her future.