More Fuel to the Fire

Jack's teacher cancelled today because she had to go to a bridal shower. She cancelled last week because she had a staff meeting and she cancelled the week before because she had school pictures. Oh, and she hasn't once asked to reschedule her missed sessions.

Needless to say "THE" email ending the charade was sent tonight. I'll keep you posted.


And, here is a glimpse into the life of a kid of a blogger (he's learned that every time I pull out the camera, he's likely to end up on the "computer")

Photo and video editing at www.OneTrueMedia.com

Looks Can Be Deceiving

Is this not just the most deceiving picture of my little imp . . .



I about fell off my chair I was laughing so hard when I saw this picture. He's the picture of sweetness, eh? Out of all my kids, this is my first kid to wear a cap and gown for Kindergarten graduation. I don't typically order school pictures, but I just might have to order this one for the humor factor.

We had a quiet weekend -- Jack is doing fantastic. My brother from NC and my sister from NJ are both coming into town this coming weekend. My sister is actually starting her new job back here, but her family won't move out until the end of June. I'm soooo happy to have my sister back home!

I'm juggling a couple of projects right now, so I haven't yet composed my "termination" letter for the school district. I'll probably let them finish out this school year and then cut off services after that.

In the meantime ........ onward!

The Real Deal

Here's the "real deal" -- the people who really care about helping Jack reach his full potential.



We had a great training session this evening. It seems that after each session there are more questions than answers. But, we are making progress getting the system set up so that it meets Jack's needs. It's just amazing all the things this system will be able to do. Jack was able to "launch" the internet today. We have "Google" set as our home page but that didn't do much for Jack. I also found out that we can download movies directly to the computer and Jack will be able to select and launch the movies himself. Very cool!

Onward ............

Charades

Charade: a blatant pretense or deception, esp. something so full of pretense as to be a travesty.

Consider the following:

The school district. Jack’s team put together an IEP that purports to meet Jack’s educational needs. Only two years ago Jack received 2 hours of speech therapy, 1 hour of occupational therapy, 1 hour of physical therapy and 2 hours of academic services per week. This year, the team decided that Jack only needs one hour of occupational therapy a month, 2 hours of academic services per week, zero speech therapy hours and zero physical therapy hours. Yet, Jack is the same kid he was 2 years ago, with the same potential and with new, state of the art equipment that has the potential to open up a whole new world of communication for him. Despite Jack’s new state of the art equipment (that the school district played no part in helping us get), the team gave Jack no speech therapy hours to help with his communication skills. But, they do have an IEP in place (that I signed) that gives the illusion – at least to the school district – that they are meeting Jack’s needs.

The DME (durable medical equipment) company. Today, I received a voice mail message asking me to call and set up a time for the RT to come out to the house to check Jack’s vents. This is the same company that argued with us for hours on Christmas Eve before it would come out and replace Jack’s ventilator that completely stopped working. This is the same company that fought me about bringing out a new nebulizer machine when it died on us over a weekend that Jack was receiving breathing treatments every 4 hours because he was so sick. This is the same company that repeatedly makes life difficult every time we call when Jack’s (life sustaining) equipment is not working. Yet, this same company wants to come into my house and invade my privacy for the sole purpose of having its records reflect that Jack’s equipment is working – at least at that point in time.

The nursing agency. Several weeks ago I received a letter from Jack’s nursing agency informing me that there was a recall on the model of ventilator that Jack has. The letter referenced a list of serial numbers for those vents included in the recall, yet failed to attach the list of serial numbers. What I didn’t understand was why the information was even coming from the nursing agency in the first place and not the DME company that supplies and services the ventilators. The letter provided absolutely no useful information to me. It served only to create stress by notifying me of a problem that may or may not apply to my situation and then failed to offer any information on who to contact about resolving the problem.

Each example cited above is a “charade”. Each example constitutes a blatant pretense of being concerned about Jack’s well-being when the reality is - the IEP, the monthly ventilator check and the letter are nothing more than a CYA for each party involved. It has everything to do with protecting themselves and very little to do with taking care of Jack.

After nearly ten years of the charades, I’ve had it. Simply put … I’m tired. I’m physically tired, I’m emotionally tired and I’m tired of being angry all the time. I’m tired of everyone telling me what they are going to do and what I am going to do. I’m tired of giving of my time and energy and I’m tired of having my space invaded just so everyone else looks good on paper – so that everyone but Jack is taken care of.

I’ve decided, after talking with Jack’s DDD support coordinator and someone from our vent dependent program, that I am definitely done with the school district. I can’t realistically be done with the nursing agency or the DME company. However, I can put some space between us. I’m not returning the phone call and I called the nursing agency and informed them that their letter was worthless. Does this make me feel better? Does it make me feel empowered? No, it does not. This isn’t about “winning” or having the last word. It is about not participating in the charade any longer. It’s about conserving my energy so that I can get through the next however many years with my sanity in tact. It’s not my mission in life to change “the system”, however, I can - and do - refuse to promote it.

Without question, there are MANY good people in Jack’s life who do truly care about him and who give it their all to make sure Jack reaches his full potential. These are the people I choose to give my time and my energy to. These are the people who I allow in my house and in my space and these are the people who I will be forever grateful for.

And with that .......

I really am done!

I'm Done ...

As much as I've tried to ignore my loathing of the school district since Jack's IEP in March ... I've now had it. The fact that no less than 7 people are re-arranging their schedules to attend the training session on the eye-gaze system this week except for the therapists from the school district was the straw that broke the camel's back. Jack's IEP is a joke and it's clear to me that the school district doesn't have any interest in helping Jack achieve his full potential. I'm tired of getting the school therapists up to speed. It's all backwards -- they are the ones who are supposed to be the experts. Jack has great therapists through our Department of Developmental Disabilities and he will be eligible for therapies through DDD at least until he is 18 - maybe longer. I'm just not sure if there will be an issue if I tell the school district to take a hike. I'd like to see them claim that Jack must attend "school" -- the two whole hours of "instruction" they give him a week (when they don't decide to cancel because something more important comes up.) Maybe we'll just take the position that we are home schooling Jack ... but, whatever you do, don't tell Eric that :-)

Then there is Hilary. She is supposed to get a half hour of speech therapy a week which she hasn't had on a consistent basis the entire school year. I got a message to call and set up a time for her IEP for next year. I think I'll tell the high school special ed coordinator to take a hike as well.

What I've experienced with both Jack and Hilary and our school district just confirms that we made the right decision 12 years ago when we picked up and moved to St. Louis. I can't even imagine how Hilary would be doing today if we had stayed here in Arizona, but I have no doubt she wouldn't be fully mainstreamed in high school with no support services. No interpreter, no resource classroom and no special accommodations. All of which is remarkable for a deaf kid!

I've been stewing about this all weekend. I'm tired of the charade and I'm not going to play anymore. As you can see, my way of dealing with conflict is to avoid it. I'd rather cut the school district completely out than fight for what Jack is entitled to. I actually prefer to look at it as choosing my battles wisely. I realized years ago that I can't take on every system I encounter as the parent of a chronically ill/medical complex/special needs child. If I really believe something is worth fighting for, I'll do it. I just don't think the services the school district (should) provide are worth fighting for in Jack's case. In any event, it should be an interesting week. I should add that our school district has a reputation of being one of the worst when it comes to meeting the needs of its special ed students, so it's not just my kids who are being short changed.

We did have a GOOD weekend with Jack. He is tolerating being in his wheelchair again and he really enjoyed getting outside for a walk yesterday. I don't know if I mentioned that he was positive for pseudomonas (which shows up as a lovely bright green slim in his vent circuits). He will be on an inhaled antibiotic for a month. I'm really not liking this road we are heading down because Jack had issues with pseudomonas the entire year leading up to his spinal fusion surgery and we could never get rid of it. It was only after being on all the IV antibiotics from his surgery that he finally kicked the pseudomonas. However, I'm not "going there" in my mind just yet.

I'll leave you with a picture of Eric from when we went shopping today. He grabbed the dummy out of the display window and sat down with it for a friendly chat. What a goof!



Have a great week!

Sibs

I'm not sure who is helping who here

Bragging Rights

This week, I had the pleasure of receiving in the mail, the following letter (in part):

To the Family of Mary Schrooten: As this successful school year winds to a close, it is time to recognize and reward those students who have demonstrated excellence in academics. Mary is one of those students! On behalf of the staff of Hamilton High School, I would like to invite you to the 9th Annual Academic Awards Ceremony. . . . Mary is being recognized for her academic success this year.

Mary is truly my "easy" kid and such a joy to have around. Other than the fact that her room always looks like a tornado hit it, she gives me almost no trouble. She is always willing to help me out and she has such a tender heart for "special" kids. I think I'll keep her!

You think I'm kidding about her room?
(this is one of her better days - you can actually see the floor)

Then there are her things that never make it up to her room

~~~~~~~~~~~~~~~

In other news:

I was able to get most of Jack's team together for a training session on the eye-gaze system which is scheduled for next week. I'm hoping to get some renewed enthusiasm for learning and using the system from Jack's team because I cannot do this on my own. And, of course, the only people who couldn't seem to accommodate their schedules to make the training session were the therapists from the school district. I sent off a not-so-nice email letting them know that I wasn't surprised in the least that the school district was the one member of Jack's team that once again managed to let us down. To be honest, I am very close to severing ties completely with the school district. What bothers me more than the fact that they don't provide adequate services (and are so in violation of Jack's IEP it's ridiculous) is the fact that they actually believe they are helping Jack and appropriately meeting his needs. Who do they think they are kidding? Certainly not me!

And ...

I've come up with a really cool idea for a project that will be an extension of my "Dear Future Physician" letter. Stay tuned ............


Have a great day.

My Letter

Check it out - far right column under and also worth noting ... first item.

Hanging Out

Jack and I are hanging out together this evening. Mark took Hilary and Eric to the movie and Mary is spending the night at a girlfriend's house. I had a nice day. I met my dear friend, Mary, for lunch at my favorite restaurant - the Cheesecake Factory. I hope you all are having a great weekend. I still haven't finished my taxes. Tomorrow. Really, tomorrow is the day!

Peace my friends.

My Night Owl

It’s after 10:30pm and Jack is still awake. No matter what time he wakes up in the morning, Jack rarely falls asleep before 11pm. I told him last night that this has got to stop because I need to get to bed earlier. I try and have his night time routine done by 9:30 or 10pm, hoping that once I turn off the light he’ll go to sleep. Jack, however, has a little trick for getting me back into his room – he finds a way to increase his heart rate. His heart rate will be in the 70s all evening long, but as soon as the light goes off, his heart rate jumps to the 120s. There’s nothing wrong with him that I can tell, it’s just his way of telling me to “get back in here”. It always works. I suction and get nothing, I check his diaper – it’s dry. I check his positioning, the vent circuits and anything else I can think of and everything usually checks out fine. It’s now to the point where I lay down with Jack every night until he falls asleep.

As I lay in the darkness of Jack’s room, the sound of the ventilator menacingly shatters the silence of a sleeping household. As I listen to the ventilator, I think to myself, “How did we get here?” How did that little boy in the first picture on my blog banner become this child sleeping next to me. How? It’s in the darkness of Jack’s room as I lay next to him, holding his hand and listening to the rhythmic whooshing of the ventilator that the tears no one ever sees fall.

The highs and lows of this journey are so extreme and unpredictable. It was only two weeks ago that I was on cloud nine – so happy and excited about Jack’s new communication system. My state of happiness was so short lived. The joy of knowing what is possible for Jack with the new system is tempered by the reality of what is required to make it possible. A lot of work, a lot of time and a lot of patience - none of which are at the top of my “best attributes” list. If only I could close my eyes, click my heels together and wish it to happen.

Not too long ago, I was told by someone that I was one of the most unselfish people he knew. While I appreciated the kind words, nothing could be further from the truth. If I was unselfish, I wouldn’t hate the ventilator, I would be thankful for it because it is keeping Jack alive. Instead, all I can focus on is how it disrupts my life. To me, the ventilator symbolizes everything about this life I hate – confinement, dependence and lack of control. It is a constant reminder of what has been stolen from me, from Jack and from my family because of Jack’s disease. If I was unselfish, I would stay focused on all the wonderful things Jack will be able to do with his new communication system instead of on how much work it's going to take to make it happen. If I was unselfish, I'd stop dwelling on how unhappy I am and appreciate the fact that, in spite of it all, Jack is happy.

My secretary told me today that I was grumpy. You think so? I used to be pretty good at separating my home life from my work life and putting on a good front at work. Not so much anymore.

Tomorrow is another day. Hopefully, this roller coaster I’m on is headed UP, on its way to a happy place. If not to a happy place, at least to a place of contentment. Contentment is easier to sustain.

**************
It's now after midnight and Jack is finally sleeping. Time for me to steal away to the couch in the family room. The only place in the house where I can sleep and be close enough to hear Jack's alarms should they go off, but far enough away that I don't hear that damn ventilator.

Update

Not much to update, but how do you like my new blog look? I spent most of the morning working on it and practically all day hanging out in Jack's bed .... me on my computer, Jack watching TV (and me). I also got everything put together so I can get our taxes done, I worked some on a video I'm putting together for an upcoming conference and I edited and finalized my "Dear Physician of the Future" letter to forward to Dr. M for "publishing". So, while I was on my computer all day, I wasn't completely unproductive.

Jack had a good day and I do feel bad about not getting him dressed and out of bed for a bit. I could say I'm lazy, but the fact is, I'm tired. I'm always tired. And it's so exhausting to get Jack out and about. Jack is just lucky his parents go to work five days a week, or he'd probably never get out of bed. Thankfully, Kristi is working a few hours tomorrow -- she always gets Jack up and moving. Tomorrow is my day to hike, so I'll be up and moving as well. The only bummer is, I have to get up at 5am. Wonder why I'm tired?!

Not much else to share, well ... except that our beta fish - "Finny" - died today (toilet-side services already held, sorry). Mark was all worried about telling Eric. Eric could have cared less. When Mark told him about Finny, the first thing out of his mouth ... "are you going to order me that book or not?" (he wants Mark to order him some video game book). On a side note, Eric asked me the other day "How old do you have to be to be a grown-up?" He was mad because he had to go to school, so apparently he was thinking ahead to when he gets to make all the decisions. Ahhhh, life is just so backwards. What I'd give to not have to be making the decisions all the time!

That's all I've got for now.

More on the Eyes

I emailed Jack's St. Louis ophthalmologist to tell him about Jack's eye gaze system and to let him know that we had Jack using the device at a distance of 2 feet without his glasses. I wanted to know what the optimum distance is for Jack with and without his glasses. He told me that with glasses Jack sees best at 2 feet and without his glasses he's not seeing much at 2 feet because he is so nearsighted. My question - why would you give Jack a prescription for glasses that gives him his best vision at only 2 feet in front of him? What does he see with his bifocals ... 2 inches in front of him? It makes me sad having just realized that Jack spends the majority of his day in bed watching television and he can't even see the darn thing. What's worse is that Jack doesn't even know that what he is seeing is not as good as it gets. It's just not right that this child cannot talk to me!

So now I have to psych myself up to call the local ophthalmologist and ask him for a new prescription for glasses that will allow Jack to see the distance from his bed to the TV. We'll then change out his glasses depending on what he is doing. Hopefully the guy won't give me any grief. Eventually, Jack will probably need new lens implants that will provide the best vision at what we determine to be his most ideal distance. I'm thinking it will be the distance to his eye gaze system. I anticipate several trips to St. Louis over the next year or two.

In other news .... I shared my "Dear Physician of the Future" letter with one of Jack's former STL docs (who is now the Director of Critical Care Medicine at Children's Hospital of Los Angeles) and he wants to share the letter on the PICU listserv and post it on a website for pediatric critical care docs. He said "you could reach thousands of doctors by this route". He is a doctor who totally "gets it".

That's the update from here. Life continues to move along at breakneck speed here at the Schrooten Ranch. Where do I get off? I am so ready for a vacation all by myself for a few days!

Peace.