I stand here leaning on the fence watching my daughter ride a horse and do therapy. I don’t usually let my self feel down depressed or like life is too hard for her because no one can live with those why me feelings for long. Today however I feel a bit depressed.

When we walked in this morning the therapist noticed that haley’s shoulders were drooping and her left shoulder is hunched forward. Neither of us had previously noticed.

Haley is doing an intense therapy program this past week and most of next. The hippo therapist suggested that perhaps the intensive work might have her drained and I hope that is the case. It sometimes seems as though there are ever more issues, whether it’s reading, braces or insurance saying they will no longer pay for therapy this year we are always dealing with something and I guess a lot has transpired this past week.

Insurance has told us that we have maxed our visits for the year and they will no longer pay for therapy until next year at which point we will only have 60 visits. They are telling us that even though it is medically necessary as part of the surgery they pre-approved and they told us verbally that we would have unlimited visits based on the need, it doesn’t fall under our policy. So we will be paying for therapy out of pocket for the remainder of the year.

On a happy note as I was writing this post I got a facebook notification from a friend that he saw me on CNN. That felt good.

Haley and I leave for St. Louis tomorrow. She
Is doing fairly well since the surgery but she still doesn’t have the stamina back yet. I know it can take up to a year but I’ll be honest we saw such great gains early on that I think I felt she would be fully recovered by now. My own fault for building my expectations too high.

Now the intensive therapist is telling us she should be in braces. She is concerned that Haley will need another surgery if we do not put her back in braces. This doesn’t make Haley happy and honestly I’m not thrilled about it either but i need to take my feelings out of it and decide what is best for Haley. The problem is that not all dr’s and therapists agree. So in the end it’s up to Mel and I to make the right decision.

Please note this post was written last Saturday. I’ll post an update about St Louis tomorrow.

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I’ve been following the story about the Florida dad who stormed the bus to threaten everyone who was involved in bullying his daughter who has CP. As a parent of a child who has CP I can easily understand exactly why James Jones did what he did. If someone threw a condom on and smacked my daughter in the back of the head it would take everything I had not smack the kid silly and then go after his parents and the bus driver that let it happen on .

In my experience based on the way I was raised I would think it’s probably best to go do exactly what James did, but based on my personal experience and observing others I think perhaps a different approach would be better. In the end the approach the man took was no better than what the children themselves were doing regardless if he was acting that way for the right reasons. His actions made it so his daughter will not be able to return to the school they had her in. It was his actions that took a bad situation and made it worse.

The children whom he yelled at are no more educated and do not better understand his daughter’s CP, they have experienced the same behavior that they are portraying and they will likely miss the point that got the father so fired up in the first place. Plus the dad is really just spewing vitriol into the air as he was not going to act on anything he said anyway. At lease I hope he wasn’t planning on killing anyone and there is no evidence that he was.

So what would have been the correct response. I can’t speak for James but I can project myself into his exact situation as it’s only 5-6 years away and we’ve already experienced some issues.

As any reader of this blog knows Haley was called weird at the begining of first grade by another girl in her class. Haley didn’t know how to respond initially and felt very dis-empowered. With the help of my mother-in-law, she and Haley wrote a book which they read to the class. We decided it was so good that we needed to publish the book and it is available for sale here.

I’ve heard some people respond to the story of the girl calling Haley weird as if it were bullying but in my opinion it is not. This girl simply did not understand what and why Haley walked differently from everyone else she observed. There was no intent to harm or hurt feelings and the book helped her understand Haley better.

But what if we project into the future. In Middle school the kids who don’t already know Haley will either avoid her or in the worse case bully her. Truthfully while it won’t be too late to educated the kids it is likely that they will have already stopped listening to adults and the best we can do is educate via example.

As I sit here I am hopeful that any warning signs about bullying behavior would be picked up on and communicated by my daughter way before the type of situation James Jones had  to deal with. If that is the case I expect I’d have conversations with the school first and if that were not successful. I discus the situation with the kids and their parents. Once this line has been crossed the only path left is to discuss with the police.

Finally if that did not take care of the problem I would then take matters into my own hands and do something similar to James, although it would be useless at that point because it would contradict everything I had already tied to accomplish.

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Last week we were given the assignment to write about love. This week I have one hundred words to write about Forgiveness.

Forgiveness

Didn’t show up at my son’s Bris. Writes a nasty letter saying to screw off. A phone call. A visit? “lets just you and I meet.“ “screw off” Writes and email on my 35th birth day saying how it was my fault.

I respond, with sadness, with love, with a request; Can we try to follow some rules that will stop this pattern from happening again. No Response!

I travel to PA from Georgia and call. I try to visit. No response!

I don’t know if I have it in me any more. Can I forgive? I think I can!

Not post related: I know my father reads my blog. It is the only contact I have with him. I love him and hope he will reach out accepting that I have reached out to him. It’s likely that he will not. I believe he feels I should apologize to him for something. I suggest that no apologies are necessary we only need to follow rules of communication going forward. This is my last ditch effort, if this public letter and appeal does not solicit a response I will live my life with the assumption that I will not hear from him again knowing that I still don’t know what the future may hold, but I am now done holding out hope.

Fatherhood 100 posts

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