Thursday, August 19, 2010

Brutal honesty.....

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!

9 comments:

Zurmely family said...

Jason is right! In college, there were ALL sorts of case studies involving children, disabled and not, who were abused, neglected or simply left behind to fend for themselves... for years... b/c the state was not doing their job. I think that, for all of California's faults, they MAY be doing this ONE thing right! love you! you're a great mom!!

Marie said...

The workers are probably very grateful that you're such a dedicated mother. It most likely is a relief to them to see someone so on the ball and lovingly involved with their child's care, I assume they must see the opposite end of the spectrum more often. It must be frustrating for you sometimes to have to go through all of that but Collin couldn't have lived without anyone else but you:)

Foursons said...

I know Bubba is your hero, but seriously- you are his hero. Hang in there, you do an amazing job as him mom and I am so thankful God chose you and your husband to be his parents.

Abbie said...

I think these post are so fascinating. You are opening your door to all of us and helping us understand what your life is like. I never feel like you are asking for pity. And...

Good work!!! You are an amazing Momma! And Bubba is so lucky to have someone that takes care of him perfectly.

Anonymous said...

OK...so just when I think my dear friend Julie is ALWAYS happy, and ALWAYS so positive..and just PERFECT..you shed a little light in on the not so fun side of our all but normal live! Thanks for sharing from your heart and writing what I would like to say!!!! For all the "watching" that is going on a lot of kids are being abused and it makes me sad...wish other people were looked on as closely as we are!!! are...HR worker coming on Tuesday..yippie!

StevefromSacto said...

Isn't it amazing how closely this family is investigated, while the Bernie Madoffs, BPs and others in the wealthy elite are free to plunder.

Anonymous said...

you vent all you want, you deserve to be able to do just that. you make the system look so good, your organized and your a good mother, they system wouldnt dare be so eager to inspect and watch a child that was being abused and or negleted. you make them look good julie....

the system is not designed to protect our babies, so many of them are abused physcially, mentally and sexually all the time and the system turns their heads...

thank you for being such a good mommy and loving your little boy i assure you that your reward will be of greatness one day :)

The Gray Family said...

it seems every time I open the paper there is another story about some poor abused kid, and how the system is letting all these children fall through the cracks...I guess it is good to know they are doing their job! Sorry you have to deal with the fallout though it can't be fun to feel like you are under a microscope like that (especially when you are doing such a WONDERFUL job!!!)

Amy Eaton said...

And I am feeling overwhelmed with school registration and keeping track of shot records...you are amazing never doubt that!!