After trying what seemed like everything, there needed to be one more accommodation.
Within four months of starting to an adult day program, Jess had been through four teachers, a complete turnover of room helpers, and was in frequent discord with the bus staff. She was having constant anxiety, urinating in her clothes, and calling me crying every day, oftentimes multiple times a day.
Jessica began skipping school days to avoid the anxiety. We tried reducing her attendance from 3 to 2 days/week. Then, she told me that she did not want to go anymore. We discussed dropping to one day/week so that she could still have the outlet, socializing, and stimulation. But, the first day she went back after taking 2 weeks off, I got the usual crying phone call from her.
In the background of all of this drama, another issue had been lingering for three years. Something that had influenced stress levels, schedules, and decisions.
Ever since Jessica had graduated from high school in 2009, sister Hannah was my number one backup plan for keeping tabs on Jess while I was at work. She did such while balancing friends, school, competitive marching band, college applications, and her own graduation. Hannah never – ever – complained about her added responsibilities even though it would have been completely okay for her to since it made her own teen life quite different from those of her peers. Hannah had a lifelong dose of reality that most kids her age had not.
In the summer of 2011, Hannah suddenly and inexplicably became gravely ill. Hannah is tough and she is a survivor. But, in 2014 when all those complications were going on with Jess, Hannah was still climbing that uphill road to recovery. She needed me, too.
The Final Accommodation Would Be Mine
The time to give up had come. I had given it my all, but both of my girls desperately needed me at home.
At that point, I went to my parents for guidance. They expressed understanding and support for my desire to change my life by temporarily leaving my nursing career and doing part-time contract work from home so that I could be available to my girls. I also discussed my decision with my brother and sister, children, and few close friends. All had the same reaction as my parents. To this day I don’t think any of them know how important their support and understanding were and that it meant the world to me.
From within, I had always felt like in some way everything was my fault. I had felt like a complainer. I had felt like people were going to think I was making excuses.
Empowered by my family support, I moved on with my brave decision. I withdrew Jessica from school and worked my last week of nursing the week of Thanksgiving, 2014.
The Waiver and Self-Directing
A portion of Jessica’s waiver funding had been paying for group services at the adult day program. A smaller portion had been designated to self-direct. When Jess stopped going to the school, the group funding was redesignated to self-direct.
By choosing self-direct, I was able to hire a part-time staff to work with Jess at home and in the community on specific goals. This allowed us to customize Jessica’s schedule to suit her needs, and it gave me some quiet, uninterrupted hours to do my contract work.
With me working from home, Jess could come and go with her staff. She did a majority of her own scheduling and planning. My work schedule was flexible, and I could fit my hours in when it suited our needs and Jessica’s moods.
Our New Plan Was Working Nicely
Everyone’s anxiety was greatly reduced. Life was calmer. We were happier. I was able to finally accept that there was not a place she would fit in. I had tried everything, and nothing else had worked. At that point, I truly embraced that this was our life, everyday, our version of normal, and things finally felt right. No more guilt.
As of 3/2016, Jessica has a COMP waiver. I have been able to hire enough staff to begin having her supervised, working on goals, and engaged full-time in daily activities in a home environment and out in the community.
With a solid support system finally in place for Jessica, I am now able to work full-time. With careful management of my budget, I am able to continue working from home to keep things smooth for all of us. Despite not having the salary and benefits that went with my nursing career, we are enjoying a good life.
“We believe that all people should have “a good life,” including a home, friends, relationships, and jobs.”
“No service can fully replace the efforts of friends, family, and community allies. The people who know you best are the ones who will be able to figure out what you need to thrive.”
Georgia Advocacy Office
After all that we had been through, I actually think everything is going to work out just like it was supposed to.
Since I began my blog, I have had people contact me and tell me how it has helped them, how it has encouraged them to be strong and to not give up, and how it has shown them they are not alone.
It has done EXACTLY the same for me.
It has only been since writing my blog for the last year that I can recognize the depth of my perseverance, my effort, and my strength.
It has only been since researching through all of my old documents that I completely understand that I did absolutely everything I could, that my life has been more difficult than most, and that it is not my fault.
Something wonderful happened in the process.
I forgave myself – even for things that I didn’t really have to forgive myself for. I allowed myself to see the individual that I am, to recognize my good qualities, and to acknowledge my own talents. I found within myself an individuality that I had never known.
I allowed myself the time to realize that there are things I really enjoy, and that it’s okay to take time to enjoy them. I realized that I do not have to take every single moment of my life and try to use it to fix things for Jessica.
Val, as I said to you recently, sometimes we don’t know where we’ve been until we take the time to look back. And, remarkably, looking back has made the path ahead clearer as well. I can’t wait to see what happens next. Pam
You are right, Pam. I’ve probably glanced back along the way, but never fully processed until now. I’m excited for what’s ahead as well, and very happy to have you along for the ride.
Val, you are such a strong woman! I’ve always admired your strength in dealing with the many challenges you’ve faced through the years. But after reading your blog, I am even more amazed at the strength and grace you’ve shown in each of the endless battles you’ve fought for your family. You are a rock star!!
Thanks so much Becca 🙂 I have certainly never felt like a rock star – I spent way too many years feeling out of place. It is such a relief to be at this point in my life. Still no rock start – but lots better.
In the big challenges or grief in life, acceptance seems like the hardest part. Often peace follows acceptance. It’s not the same as giving up. It’s the peace of finally realizing something can’t be changed. As you said, it’s something wonderful, and I’m happy you are there.
All that time, while I tried all of those things, never did it occur to me that I needed to accept the possibility that nothing would work. Only when it actually occurred did finally I see it. And truly, it may have been when I wrote my first post, My Inspiration, did I get it. Once I accepted it and moved in that direction, the peace that followed has been incredible. The Final Accommodation turned out to be my own, and life suddenly seems a million time more ‘normal’. Things are as they should be and we are happy.