― Melissa de la Cruz, The Ring and the Crown
I will admit it. I am competitive. I love to win. I also hate loosing or giving up. Ever.
I'm a terrible looser. Especially when it comes to children. When they loose out on things that they should have it grates my nerves. I want to overcompensate at times because they missed out on so much. I feel that they earned these things from the abuse and pain they lived through.
That is why we had a big meeting yesterday. Why I sat down with about 12 people from different areas of our children's hospital therapy center.
Let me back up a bit. I got out of Early Intervention in our state as soon as possible. It was a flawed program. The vision therapist I cherry picked and fought for was the ONLY decent part of EI. My child wasn't making progress. So I had heard rumors of a magical place where kids got lots of services. So I went there. I went through the evaluations and my daughter was in. I was super excited. Here was this great place with lots of bells and whistles and my kid was going to have the best!!
I was handed paper work and explained the 80% attendance policy. I patiently filled them in on my daughter's health and said that we may not make it 80% I was worried, but I was told that it was not a big deal and this was not written in stone. I could have make ups. So I signed. And we started attending.
Cary Lynn loved it. I saw improvements. But I still had one medically fragile kid. Our attendance slipped and skidded with hospital stays and illness. When I would ask for makeups I was told that there were none. Ever. I fretted. The therapists hinted that maybe these times weren't her best. But I held on doggedly. I tried to keep stuff from getting in the way on Mondays. But you can't tell your kid NOT to get sick or go to the hospital.
Then about two weeks ago I got a phone call. It was the speech therapist. She insisted we had not held up to 80% and I was being evicted from the program. I was stunned. And then I was mad. I knew that other parents weren't showing up 80% and still had services! I insisted that we were being bullied, I wanted documentation, and I did not agree. We left it at Cary Lynn being dropped to every other week. I hung up and I was so stunned. I cried angry tears.
Then I started emailing. I told my team that if we were going to evict people than we needed to up my child's game. No more rolling, sitting. I wanted her up in gait trainers, on the treadmill. I wanted her to move beyond one switch for communication and explore devices that would give her a voice. I wanted eye gaze technology. I felt like we were doing as little as possible lately and that my daughter needed more. Then I called the pediatric advocate and sobbed out everything.
I was loosing. Loosing services and a slot and I couldn't have that. Soon I was hearing from higher ups and we had a meeting. I spent over an hour with two of them. I plead my child's care and case. We agreed to have a bigger meeting. In the meantime I fretted, stewed, cried, and just out and out lost it. It was stressful. And it wasn't fair. Or right. I wanted to just leave at some points. But my daughter, patient and cheerful, used her device to let me know she wanted to stay. So honoring her choice and her voice became my priority.
So when we came back yesterday I sat patiently while her PT made an effort to get little stiff legs to stand. And they did. Briefly.
I proudly showed her speech person the communication device we are working on in the IPAD. She immediately said she did not like the brand. She then said it was "too much" for my child. And that "children like your daughter" don't really understand that much and "probably never will". That speech there even though they "presumed confidence" know that most children can't.
I had no words. I was so crushed. I wanted to cry but reminded myself that we had a meeting. It could be addressed there.
Next was OT. Cary Lynn rocked out eye gaze. She also played some awesome games. It was the best I had ever seen!!! I felt soo much better.
Then my husband came and we started the meeting. The hospital advocate came too. The meeting was broken down into two parts. The first part was insisting that the 80% was right and fair for all. That did not sit well with me. I also brought to their attention lack of make ups. I couldn't make them understand me and I didn't understand them. The second part consisted of therapists reports. Of Cary's achievements. The goals I had asked for were being debated. I fought harder. I was going to win this one! I did get some of my goals in place. But only for 6 weeks. If she does not "move forward" then it is not the time. After all they didn't want to "therapy her to death". Her OT wouldn't even LOOK at me or contribute about how well she was doing.
In the end it was agreed that we would continue weekly services. For 8 weeks. To see if we could make our 80%. They also admitted (to our advocate not the family) that they handled this wrong. We also have some new goals and things to try. I also get a case manager that I meet next week to help me handle and coordinate things.
So was it a win? To most yes. We have our services in place. The hospital also knows that I'm not so easily pushed around and may think twice about how they handle us. They also are willing to try some new things with Cary Lynn. She gets a chance to try to walk. So in that regard, yes it was a win.
But in so many ways the win is hollow. And it is overshadowed by so much painful loss. The loss of faith in my child's team that they really have our families interests at heart. The loss of respect for people who think my daughter has the IQ of a carrot and is not worth their time or effort. The loss of trust that they will make the best therapeutic choices for my child. That they will challenge her to try and believe that she can.
For me victory has never been more bitter. It leaves a rancid taste in my mouth and pain in my heart. The most painful part is that I will have to take my child away from a place that she loves and ASKED to be in to find another one that will support our family. How do you explain to a three year old that the people she loves do not see her as one with value? One who is worth so much more than they can see.
Time will heal the wounds of hollow victory. We are stronger than this and I know that there is so much more out there for my child. I hold on to the hope that hollow victory can be replaced by true victory in a place that supports my daughter and values her as a person who is capable and able to do so much more than the limitations that people set upon her.
