A mood to match the sky (unabridged)

Will the complaining on this blog stop soon, you ask?
My Magic 8 ball says, "Outlook not so good."
(At least for most of this post!)

On Friday, I toured what we thought was going to be Gracie's school. It didn't go well... or at least, it didn't end well. By the time I got home, my mood matched the gloomy sky and I literally couldn't speak about what transpired without crying. My whining from the night before turned to anger, sadness, frustration and disappointment.

I should preface by mentioning that we originally had two classes from which to choose for Gracie. One is a "Multiply Disabled DHOH (Deaf and Hard of Hearing)" class and the other is a "Medically Fragile, Multiply Disabled" class. John and I carefully considered both programs after I, alone, toured them. There are pros and cons to each, and while I was initially very frustrated with the decision making process, Gracie's former teacher kindly reminded me that we are lucky to have two programs to be considering.

The "Multiply Disabled DHOH" class is ideal for Gracie - - she would actually be one of three students in the class with CHARGE, if you can believe that! I still can't! The students in the class range in age from (I believe) 5-10 years old and are placed there based on abilities and goals. I felt like I had walked into a dream when I saw the class... it's exactly the "blend" of programs I had wished was available before we moved. But there are some drawbacks in placing Gracie there at this time. One is that she'd have to have a nurse attend with her and finding a nurse that will be a good match to Gracie and that John and I are comfortable with isn't necessarily an easy task. Given the nursing shortage and the economy (thus the criminally low wages paid to the nurses), finding someone becomes even more difficult these days. The other issue with that program is that Gracie would be the only student not "independently mobile." There is one student who uses a gait trainer, but does so without much support.

In the "Medically Fragile, Multiply Disabled" class, Gracie would be with peers who are at relatively the same gross motor development level as her, I am told relatively the same cognitive development (that's hard to determine from my visits), but NO ONE signs. There are nurses and health aids on staff so there wouldn't be a need for hiring a nurse. However, since the (and this is HUGE) communication piece is missing, she'd need a one-on-one Signing Instructional Aid to be with her. Finding a person to fill that need for Gracie is also a difficult task. There are other pros and cons to this placement. The "big" additional pros are that the OT and PT clinics she'd be attending are there so she'd be able to go to therapy directly from school. Also, she'd be in a class with peers who are using the same equipment as her and working on many of the same skills as her. This would be (we think) motivating for her.

Ultimately we decided that we'd place her in the "Medically Fragile, Multiply Disabled" class and work toward the "Multiply Disabled DHOH" class. The idea was that we could be looking for the right nursing fit in the meantime with the goal of placing Gracie in the other class in the fall. Additionally, we felt that since she's still adjusting to going to school full time, having a "one-stop-shop" for therapy and school might make for an easier transition.

During Friday's tour, my main purpose was to determine whether we'd want Gracie to attend while the district is still trying to find a signing instructional aid. I spent nearly two hours with the Program Director and he patiently answered my questions and showed me everything I asked to see. When we finished, I asked the program's nurse if she had a few minutes to chat about what she needs from me in order to get Gracie's medical plan in place.

We had a friendly chat about a few things... a little small talk about bacteria. I asked her a few questions about Gracie's current illness and she actually helped enlighten me a bit. It was a rapport-building conversation, I suppose. But certainly not enough rapport for what followed.

She informed me that Gracie's secretions must be under more control before she'd be allowed to attend school. She wasn't in any way referring to Gracie's current illness, rather her secretions in general. Gracie has, as I have said here before, incredibly tenacious secretions. She doesn't have the cranial nerve function to swallow... what little ability she had (and it wasn't much) completely stopped with her extended hospital stay at 16+ months during which she received her tracheostomy. She produces, according to her old ENT and the ENT we saw at Stanford, far more than the "normal" amount of saliva for a child her age - - more along the lines of an adult's production. Combine that level of saliva production, an inability to swallow and an open trach and you get a bit of a "wet mess." We have always referred to her as a "junky trach." Anyway, I was floored... no one had mentioned this issue until now. I toured that program in December and everyone was working (since the break ended) on placing Gracie here. While I understand, to a degree, the reasoning behind this requirement, I feel it's an incredibly subjective issue... who's to decide how much is too much...? What are Gracie's rights?

I informed the nurse that we'd tried everything conventional and non-conventional without success - - what did she expect us to do? She said, "You have to get her on Robinul." (This is a med that helps dry up secretions.) I let her know that we have tried it numerous times... it doesn't work for Gracie for various reasons. She said, "You have to try again... and you have to be diligent." Pardon me? "If there is one thing I am, it's diligent," I told her. (And, who on earth is she to judge how diligent we've been? She doesn't know me... she doesn't know John... and she doesn't know Gracie.) She responded by telling me, "You have to be more diligent." At that point, I was still reeling from the fact that we are taking steps backward... Gracie can't go to school. Now that she's finally ready and willing (with the exception of her current illness) they are taking it away. By making the "diligent" comment, she added insult to my injury with (what I perceived to be) an attack on my parenting. And, she didn't stop there.

She went on to further explain that Gracie also must wear something to cover her trach - - be it a trach collar, an HME (a "nose" cover for the trach) a surgical mask... something that will help stop her secretions from flying "free" when she coughs. Gracie has never been one to wear anything on her trach - - her 'preference' and because of her secretion production, most of those things aren't really good options. And, since we've had other, more urgent things to teach/train behaviorally, forcing this was not at the top of the list. I let the nurse know it and said I am more than willing to work on it, but that it will take considerable time, I imagine. (Given that it took nearly two years to get shoes back on her feet after a barefoot summer... my little OCD girlie!).

The comment made to me at this point was, "If she pulls a cover off, we have ways to keep it on." I wasn't thrilled with the tone or her sarcastic follow-up comment (which was likely in response to my facial expression), "But, maybe you don't want to know what that is." You bet I wanted to know... turns out it's a "cuff" type of device that fits over the arms of the (non-compliant) student/person and keeps them from being able to touch his/her face or head. It is NOT a restraint... it allows the person to reach in front of his/her body, reach a desk or tray, hug, etc. But, nothing toward the body, certainly nothing on the face, neck or head. I explained to her that under no uncertain terms would this be permissable for Gracie. She told me, "It would teach her that 'no' means 'no.'" I explained that Gracie uses sign language and to take away those movements and her ability to reach her body, face, head, etc., would hinder her communication. I explained how many signs are in that area... that she wouldn't even be able to sign her own name... amongst so many other things. She (IGNORANTLY) said, "What's the difference if she signs it 'here' (pointing out in front of her body about 10 inches) or 'here' (touching her face)?" Seriously? I didn't, at that point, have it in me to educate her. She threw in a few more comments... one of them being that I was focusing too much on language and communication and not on just getting her into the school. She felt the need to "explain" to me how much Gracie's been through and that I should be thankful she's even able to attend. (I am thankful... that goes without saying. But communication, is, by far, the biggest and most powerful tool we can provide our children. OF COURSE I will turn my focus there. Without that piece, what is school going to do for her? She doesn't need a babysitter. I have no intention of sending her to school so that she can sit around in her KidKart staring off, watching the world go by.) I could feel the emotions rising in my body and my goal was to get from her office to the parking lot without bursting into tears. I was also told that Gracie needs time away from me (I will be the first person to tell you that) and needs to "come to school and get some constructive love." I won't even dignify that with an additional comment.

I don't even know how I got home. I called both John and my mom, explaining some of what happened. By the time I parked in the driveway, I was sobbing and reeling with so many emotions. I was sad for Gracie and this huge setback. Disappointed for Gracie. Angry that I had allowed a perfect stranger manipulate me into doubting how I've mothered my daughter. Angry that I hadn't stood up to her more as it happened. Sad that the excitement of Gracie going to school had turned so ugly. Frustrated that we'd chosen this program and wasted time trying to make it work and now there is absolutely no way I will send my daughter to that school because I cannot trust in my heart that her best interests will be considered on all fronts. Sad because, for the first time, I regretted moving here.

I did call her new pulmonologist to get (yet another) prescription for Robinul so that we can diligently try again. And then I gave myself permission to live with all of my emotions the entire weekend. Amongst a million rants, I blubbered about, "What will we do now?" and "Who the hell is she to judge my parenting?" and "What if we still can't control her secretions... will she be stuck on home-hospital forever?" Along with the blubbering, I ate A LOT of comfort food.
When Monday rolled around I knew I had to speak to our district's Program Specialist and I just couldn't. I wasn't ready to have a coherent conversation... I was beyond the crying, but I was angry and scattered. I spoke to one of Gracie's former teachers (and my friend) and she helped me gather my thoughts and gave me a place to start the conversation.

Today I had that conversation... not nearly as neat and concise as I had intended... but I made my points. Apparently, I am not the first person to have these kinds of feelings after an encounter with said nurse. And, as luck would have it, we have ourselves a wonderfully reasonable and proactive Program Specialist! She had a plan "B" that has it's own plan A and B. We will put Gracie back on Home-Hospital for now, get assessments done (she's due for her triennial assessment ALREADY) and have all the "players" (i.e. teachers, therapists, etc.) get to know her (and love her!). In the meantime, the SELPA nurse and district nurse will meet Gracie and we will get some answers about her unacceptable secretions and how to proceed with a classroom placement, while I head the FULL-TIME, daunting search for a nurse.

So, there is a plan. I am not crying. The sky is blue and I have hope again.
My Magic 8 Ball says, "Outlook Good."