Pulling the plug . . . on bible college

I feel like it’s time to lay it all it all out on the table. These last few months have left us empty, worn out and not being able to know where or who to turn to. It’s the first time that I feel no one can help us get out of this.

I feel like I am hiding a secret. Life is not OK. It’s not OK. It’s not OK. Everyday I struggle to get out of bed because I don’t know what Plan B will be, or if there needs to be Plan C.   I have no more answers.   Everyone looks to me but I am out of resources. I am tired of begging people for help

I need to provide background information for you to fully understand what we have been through and the impact it has had, not just on Kourtney, but our entire family. We feel helpless and are having a difficult time knowing where to turn. We have a depressed 19 year old who desires independence and community, who has a mind to be stimulated and who needs friends who aren’t “employees”.

The latest problem began when our daughter turned 19.  Instead of steering our daughter towards a life on independence, our regional healthcare system reduced, Kourtney ‘s respite funding by almost 50%.  They basically told us that it was time for Kourtney to wear her “big girl . . . diaper”.   A diaper!  That was their solution to Kourtney’s night-time bathroom needs because it costs less than to have a caregiver around.  It was humiliating.  When we first applied for her adult funding we filled out a time task analysis; a day in the life of Kourtney.   It took hours for us to complete but it took just minutes for a “committee” to reject the respite hours we feel Kourtney needs.  We were told to appeal but I have chosen not to.  It is a waste of emotional energy and time, neither of which I have. It is my understanding that it’s a ploy by the healthcare region to start with minimal amount of grant money, and bank on families being too exhausted to.  It’s not right that we have to go through that after having 19 years of help and now have to beg for hours.  I wasn’t even allowed to talk to a social worker to help us navigate the system as they felt our family’s problems were psychological and far above what a social worker could do (not even kidding).

Which brings me to college. Kourtney ‘s desire was to attend bible school, live in a dorm and have some independence.  With her 19 birthday being in September we had no idea what her funding would look like (never did we think it would get cut back as much as it did).  So Kourtney enrolled for one class at CBC and had one caregiver (provided by us) that drove her to school and stayed with her at school.  We learned later that Kourtney had signed up for one of the most difficult 1st year courses. Despite the challenges of her course, she still loved it. But she didn’t get to know anyone; there was no community, no contacts. Basically she felt ignored her first semester. I raised concerns however unless I am lighting the place on fire my voice doesn’t get heard.

Second semester rolled around no plan was in place, not from a lack of trying. I knew that if I could only meet with the “right” people at the college it would have been an easy solution.  Between working, transitioning payroll forms, being a mom to Shaelyn, training new girls for Kourtney’s care, Kourtney having surgery a few days before Christmas, taking Kourtney to weekly appointments into Children’s Hospital, being worried about my husband who has been sick since October **(whole  other story) I had no time to tackle people to have a meeting with us. No one seemed interested or able to effectively help Kourtney transition. We did not have the funds anymore to send a caregiver with Kourtney.  This would have been the easiest solution. It took us a week into the new semester to schedule a meeting, with the academic support people. At this meeting we were told that Kourtney had a grant for transportation to and from school, money for a tutor and other miscellaneous expenses. Kourtney really wanted to go to bible school.

This all seemed too good to be true and it was.  Kourtney had already missed her first week of school, so she was looking forward to starting. However, we were told that she would have someone meet with her at school so they could turn the key for the archaic lift system to get Kourtney up and down the stairs.  Kourtney was so excited about being independent and called the school to make sure that someone would be there. On her first day she was told to stay home because nobody could walk 50 feet and take 3 minutes out of their day to turn the key for the elevator.  I was woken from my night shift slumber and I was very upset. I ended up calling the president of the school and that’s when I got fired up. We ended up having a meeting with him and the solution to the problem was to pay to have someone turn the key. Not for someone to be in class with her, but to just to turn the key.  I would have pulled Kourtney out at school at that moment, but Kourtney was so thrilled when she came to school in her electric wheelchair with no caregiver with her.  She was excited to meet people. She was confident that there would be enough people around to help her turn the key.

However the bumps continued, larger ones with more frequency.  The lift not working, the grant money only being a fraction of what was estimated.  Ultimately, it felt like we were trying to fit a square peg into a round hole.  It just wasn’t worth it anymore.

So, with sad hearts we made the decision to pull the plug on Kourtney’s education at Columbia Bible College. It was not an easy decision, but now that we’ve made it, we feel free. During this time Kourtney’s health has steadily been declining, so we will turn our focus on getting her better.  She will be getting an iron infusion and blood work done. We have a few getaway trips planned and she will now join us on our family Arizona holiday. Kourtney and I will start talking with department heads at our local university which is set up to more easily accommodate her needs.  It is heartbreaking that Kourtney cannot attend bible school.  

Now it’s time to concentrate my efforts on getting the help she needs. My next plan is to start rattling the chains to get Kourtney more respite help. The department has been restructured,  there is no contact person which I consider positive because I will go straight to the director of the program. If there is one thing I know I am capable of is fighting for her to make Kourtney’s voice heard. I refuse to go through the nit picky appeal process when her first application was not even looked at.

Just a P.S. We have some amazing supportive friends (MATT and MO, CHERYL AND LIONEL) and we are so excited to have family that moved here from Saskatchewan!

**Todd as well saw a specialist this week. He has been suffering with laryngitis that lasted over 3 weeks. Being a music teacher he was not very useful in the classroom. He will start a gradual return to work and start seeing a vocal coach to help him rehabilitate his voice. It’s a common problem with teachers.  I have been thankful that he has been home as he has been a huge support to all of us through this very difficult transition.

P.P.S.  Just got an invoice for an attendant to operate the key for the elevator.  Even included hours for when the class was held in the commuter lounge (ground level) for 3 days.  No attendant was needed!