As I child I was told I could do anything I wanted. I just had to believe, the power of a positive attitude. It is a lesson I never quite got. Self-doubt would creep in. What if they are wrong? What if I am not good enough? What if it is just self-delusion? I stopped myself from accomplishing some things I wanted to, thing I was capable of.
Now that I have ‘Buddy’ the stakes are higher, and I am starting to learn the lesson. It is not that I do not see possible negative outcomes. I do. It is that I refuse to settle for them. I want more than anything for ‘Buddy’ to surprise the Hell out of everyone, myself included. I want to believe that he will be the rare exception of his circumstances. He will survive, thrive, learn, grow, accomplish and live self-sustaining one day. But my dreams for him don’t stop there. In my best dreams he, is able to give back to society, to attend college, to have a family, to have a career, to live a full life.
I am not in denial. I have hope. And hope gives me drive. So I push, and push. I love him and I celebrate him. At the same time I know my time may be limited so I enjoy every moment I can. It is a dark gift to almost lose your child…repeatedly. It gives you deep appreciation. I am in awe of his strength, his sweetness, his determination, his smile. He is magic.
I feel a strange sense of balance…tension, between fear and hope. In the middle there is a humming energy created that I channel into finding answers. It is a powerful place to be, now… to find a way to stay here.
When the prospect of ‘Buddy’ needing a wheelchair first came up, I was not very receptive. I knew his therapist cared for him and was looking out for him, but it felt like she was giving up in him walking. I took it very hard. I fought it. But then a second therapist said, very kindly, no one was giving up on him. He will most likely walk and maybe even soon, but he will not have the stamina to keep up for a while, and do I really want him straggling at the back of the pack. Wow. No, I did no. I would get the chair.
There was a second reason I was resistant. I had heard horror stories from friends about having to fight insurance companies, sometimes for more than a year, to get a chair even when it was clearly needed. Ugh, here we go.
It was the end of September, and we had met our deductible for the year. If things went quickly, we would not have to pay out of pocket for the chair. I wanted things to go quickly. I talked with a rep from the wheelchair company to set an appointment to fit the chair. I told her that day we were on a timeline, that I expected the insurance company to push back so we would need to be efficient on our side to give us time to fight that battle. The paperwork sat on her desk for two weeks. And so it begins.
I began calling her daily trying to use my Companionate Respect approach. My daily message was; “I know you are very busy. How is ‘Buddy’ case coming? Is there anything I can do to help?” The fire was lit. (She wanted me to leave her alone.) She got her work done and was able to pass me off to the rep who works with the insurance company.
I took the same approach with rep number 2. In our first conversation I told her to let me know if there was anything I could do. I was only too happy to help if the insurance company pushed back. I got a call from her within a day or two. The insurance company said they changed their policy and they no longer pre approve durable goods. They expected me to take possession of the chair, pay for the chair and seek reimbursement ($5-10,000.00). Well that did not sit well. I called the insurance company myself and told my story. I was transferred to Pre-Certification. I told my story again. I was transferred to Medical Pre-Determination. I told my story again. I was transferred to the main line. I started telling my story again. The line went dead and when I called back they were closed for the day. I lost it. I was no longer companionate or respectful. I ranted. I raged. I was glad my son was sleeping.
The next day I repeated the process. This time I asked for managers each time. I was sent around the same circle of transfers. The same circle of frustration. I was relating my story to a friend, and really feeling persecuted and victimized. Luckily my friend stopped me short. She used to work in insurance. She told me I had to stop thinking they were out to get me. The people who work in those jobs do so because they want to help. Unfortunately, they also have a bunch of rules to protect the company from false claims. The next thing she said saved us and got us our wheelchair. She said: “The problem is you are caught in a loop of first tier support, and your case is too complicated for them. You need to request a case manager. They will have more experience and be able to navigate the system faster.” It was as if the heavens opened and a light shone down on her. (This is not the first time she has been our angel, and we are very thankful for her.)
Later that day (end of November) I called and asked for a case manager, and was assigned one. We talked, I told our story one last time and she said she was on it. I believed her, and gave her space. 3 days later I heard from her and the chair had been approved. It would be delivered just before Christmas. We had gotten our chair in 2.5 months! I thought that was incredible timing. I related our story to a friend who was in a similar time crunch. She took our lead, avoided the weeks I spent with entry level people and went straight to a case manager. She got her chair in 2.5 WEEKS!
The best thing about our case manager is that she can open a new case for us any time. It feels so good knowing I can get clear simple answers without having to retell our story a thousand times.
Oh, and ‘Buddy’ loves his wheel chair. He sits up taller. He interacts more with the world. When we are shopping he really looks around the store and reaches out to touch things he passes. Another great thing is that people know before they approach that my son has issues. If that scares them, they stay away. No more awkward moments with people who don’t know what to say, and we have the most wonderful conversations with people who do decide to approach. It is really nice to have people come up and really interact with ‘Buddy’ in a heartfelt way. I am so glad we got the chair, but I still hope we don’t need it for long.
Sometimes things just fall into place. When you are used to fighting for every little scrap, it can take you by surprise.
Last Tuesday ‘Buddy’s’ new physical therapist (PT) put him in a Johnny Jumper to help him work his legs and have a little fun bouncing. He loved it. This led to a conversation the same day with his occupational therapist (OT) about trying a walker/gait trainer. I brought it up with his PT on Friday. He said sure, looked around the room and said “What about this one here?”
I was a little stunned. Could it be so easy? No jumping through hoops? No calls to suppliers, or insurance companies? Yes, it could. Tuesday, one week after the first thought was voiced, ‘Buddy’ was fitted into his gait trainer. But it didn’t stop there. He did not fuss. He moved his feet. It wasn’t perfect, but you could see the pieces were there. We made it from the classroom to the therapy room and back again. He was in it for just under an hour, and when he came out, he slept…hard.
My heart raced. My heart continues to race. ‘Buddy’ is three, and 35lbs. The thought of him walking has been my hope, a dream, but I was cautious about it. I was preparing myself in case it did not happen. I still caution myself that our successes are fragile. At the same time, they are successes. ‘Buddy’ is doing great! He is such a fighter. No matter what is thrown his way he just keeps moving forward. He is such an inspiration.
I am a believer in miracles. I have to be. But the miracles I believe in are the ones that we make happen. Through force of belief and efforts to push boundaries we can make the impossible, possible. We did it, bringing ‘Buddy’ into our live. ‘Buddy’ has done it by staying in our lives, and he continues to do it with each new milestone. But what an incredible blessing when pieces of those miracles fall in your lap.
Two years ago, the goal was life. Last year, the goal was to be able to sit on his own. Today, walking! It takes my breath away. What a gift to have people in our lives that see his potential and are so excited to help him reach it. What a gift to have a son who is so strong, determined and happy. I have not always felt lucky on this journey, but I do today. I feel very blessed. All because someone else saw my son and reached out to help make his way a little easier.
‘That Parent’ is a label I have worked hard to avoid. ‘That Parent’, you know, the one who’s considered too demanding, too noisy, too entitled, pushy, a pain in the ... Not that I haven’t been her, not that I think it is bad to be her. In fact I think it is our job in fighting for our kids. The problem with being ‘That Parent’ is that providers write you off. You lose credibility. This is why I work so hard to see every side of a discussion, to really hear what is being said and where it is coming from.
Last weekend I went to hear Thomas E. Reynolds speak. He is a theologian with a special needs son. He wrote Vulnerable Communion: A Theology of Disability and Hospitality. Mr. Reynolds was speaking on Community and inclusion. He was saying that hospitality is good, but that is often comes with the expectation that the outsider fit in. He proposed Compassionate Respect as a better way to include those that are often considered outsiders. In this way, we can accept people for who they are, respect them for their experiences and learn from them through true connection.
During the question and answer session, a question about power was raised. When you have special needs, or are the caretaker of someone with special needs, you have to fight for your power. Often you are expected to do as you are told. Often you are too tired to do anything else. But there are times that you do need to speak up and ask questions. This is where the ‘That Parent/Patient’ label comes in. We are exhausted, overwhelmed, sleep deprived and desperate. It is hard to have a calm rational conversation. It is easy to get defensive and angry. We are in a different world from the people we’re trying to talk to. There can be major communication breakdowns.
When I heard the term Compassionate Respect, something clicked. Wow, what a powerful concept. Unconsciously, this is how we try to interact with all the amazing people who have helped us with our son ‘Buddy’. Somehow, it felt as if Mr. Reynolds named our actions and gave them a more solid form. I know these doctors, nurses, dieticians, therapists, teachers, etc. are in their field to help. They have hard jobs and they give so much of themselves to so many. It can be exhausting work. It is so easy when exhausted to forget that the other person may be as well.
Compassionate Respect, it had such a substantial feel. When I think of all the people who have had a major impact on our lives, I see Compassionate Respect in action. When I think of my biggest fights for Buddy’s care and needs, the successes have been because of Compassionate Respect on our part and the part of the provider. The thing about Compassionate Respect is that it has the power to draw itself out in others. It sets a tone to conversations that is very productive.
I could not resist the urge to talk with Mr. Reynolds after his speech. I told him how the discussion struck me. I told him that this is how I approach all of my son’s providers. He looked at me and said: “Wow, that is a lot of work.” I couldn’t stop myself, I started crying. He was right. It is a lot of work. There are times that I have to take a deep breath and dig deep. But I do it. I do it because I know the providers need to be seen and appreciated. I do it because I need not to be angry. I do it because it is better for ‘Buddy.’ The answers are fuller and richer when we work together, and ‘Buddy’ needs to know how to be Compassionately Respectful himself.