I am going to be brutally honest. I consider myself an open book on most things but sometimes I don’t get into great detail because I don’t want people to think that I am trying to “gain sympathy or get you to feel sorry for me.”( Yes, I have received e-mails telling me this. )
So, here it is… this week has been hard for me. I feel as if my privacy has been invaded and that I am under constant watch. I am sure you are thinking WHAT IN THE WORLD IS SHE TALKING ABOUT!?!?!
Bubba is what the states considers “institutional deemed.” In other words if we wanted we could have him put into an institution. We obviously do not want this and would not EVER want this. So, the state of CA offers certain assistance to families with such “involved” children to help with medical bills, their care, etc. One of these services is In Home Supportive Services. I had an apt. with Bubba’s IHSS case worker on Monday. She came in and asked me tons of questions about his health and care needs. Earlier this year I had to be finger printed in order to care for him. (Not even kidding you!!!) She asked to see his bed and needed to make sure that he is “safe” in our home. I had to give her a list of all of his medications and doctors so that she can contact them. She informed me that I needed to have written authorization from the doctor to tube feed him. Ummmm… so until then I guess I will just let him starve????? Don't get me wrong…. I really don’t mind having these appointments, especially if it weeds out the people who abuse this system set up to help children like Bubba. It is just hard to feel so watched and “judged” at times.
Then the next day Bubba’s nurse’s supervisor made a visit to our home. It was a routine visit. She wanted to see ALL of his medications and make sure that none of them have expired. (And of course they were all fine.) She checked in our medical closet to make sure that our nurse had the gloves and equipment that she needs to care for Bubba. Then she wanted to look around our home to make sure that it is a safe environment for Bubba and for our nurse to be working in. Again, I don’t mind that she came, she is just doing her job, BUT it is still hard to feel so “watched” all of the time.
And tomorrow I have an appointment with Bubba’s regional case worker. I will have to revisit all of these things mentioned previously. However they focus more on his education and IEP, therapy, and goals. I will have to explain my choice to opt him out of summer school and his summer camp this year because he was post op. I will have to discuss objectives and goals for the upcoming school year. I will have to show that I have my child’s best interest in mind in all of the decisions that I make for him. Regional Center will also want to know about Regan and what support she is receiving as a sibling of a child that is so involved. They will go into my mental state and how I am holding up as a mother with a child that is so demanding and occasionally abusive. Yes, don’t let that cute smile fool you, he has given me a fat lip, black eye, and left bite marks. I will have to reassure her that I am fine and have a wonderful support system in place.
When I told all of this to Jason he just smiled and said “but when you took them around the house they probably said that everything was perfect didn’t they?” …..”and they were probably grateful that you had everything there and ready for them…. Right??” me…. “well… yes BUT it is still hard to feel so watched.” Then after we continued to talk for a bit we talked about the children that might NEED to be watched for their own safety and well being. It breaks my heart to think that there could be a “Bubba” somewhere out there being neglected. So, I am grateful for these systems… for the support. It is so hard to constantly feel watched BUT if it means Bubba get’s to stay with us I will do it as much as I have to…. Because that’s what Mommies do!