We had Raya's first of what will probably be many IEP meetings today. IEP stands for individualized education program, by the way. This is the final step in transitioning Raya from early intervention services to preschool (other than turning in her school registration paperwork). Because she is also a long term care kiddo, she will continue to get therapies outside of school as well so this meeting was just to determine her goals & services for at school.
I will preface this by saying that overall, I am very pleased with how the meeting went and how Raya's IEP is set up, with the exception of 2 things. One is probably going to be fine and work itself out as we move forward. I knew the other one was going to be an issue and it could turn out to be a huge, ugly problem.
Raya had a rough day today. It started at 7:45 when she started asking for marshmallows and I told her no. After that, she cried off & on for 2 solid hours and most of that time was spent clinging to my legs or wanting me to sit and hold her on the couch but not touch her with my hands. Normally I would have loved to oblige the couch cuddling but I had a chemistry lab & quiz to do and I really needed to do it before the meeting. Finally after 2 hours, we turned on Backyardigans and she flopped down on the floor and watched it. Backyardigans saves the day again.
She didn't have a nap today, so by the time 2:00 rolled around, she was a hot mess. She had cried off & on all day except for the small amount of time during which her stomach was empty. She was pretty happy then, unfortunately. As I had predicted, she fell asleep in the car on the 7 minute drive to the school. I had brought the stroller, which was awesome, but IF ONLY I had thought to bring her blanket. Major fail. I got her out of the car and into the stroller pretty easily but when she stirred awake a little bit, she asked for her blanket. When I told her I didn't have it, she flipped out again. I pushed her into the building screaming, crying, angry, etc. and I couldn't believe how much she echoed down that very long hallway. The evaluation room was more than halfway down the hall and I'm sure they heard us loud & clear. While we waited for them to come get us, I tried to connect her next feed. She was in no frame of mind to willingly let me do that but it needed to be done. I got it going but not without a lot of fit throwing.
The school psychologist came down the hall to get us and when she saw Raya, she said, "Aww, somebody's not happy!" I know have said it many times myself, but I truly hate that phrase now. More often than not lately, I hear that at least once whenever I take Raya somewhere. I pushed the stroller down the hallway and into the classroom and sat down at the table. As soon as I sat down, Raya wanted out of the stroller. I told her she could get out if she put her backpack on. She didn't want to put her backpack on. The next 5 minutes consisted of her screaming and crying and trying to get her backpack off, which she succeeded at multiple times except for the waist strap. Eventually, I conceded and disconnected her from the pump so she could go play and we could have the meeting. Ironically, the first statement we went over from the evaluation meeting said, "Parents also report that Raya can be physically agressive, intentionally disobey, impulsive and stubborn. She will have temper tantrums and sometimes seems sad for no clear reason." To which I replied, "Nope, you haven't seen ANY of that in the last 5 minutes, have you." And they laughed, and so did I. It hurts my heart to know that she has so little control over her emotions and the related behaviors though.
There were several mini-meltdowns during the meeting for various reasons but we continued on in spite of it. She also demonstrated her love for climbing on things while we were there. She had a few fleeting moments of being happy here and there too.
So the point of the IEP is to put into place goals for the child to be working toward as well as to put into place guidelines and safeguards for working with the child's individual needs. Overall, I felt like the IEP that the school district wrote up for Raya is good. They are addressing her concerns in the areas of speech, peer interaction, following directions, and transitioning positively from one activity to the next. These are all very good things to work towards and will be beneficial to her throughout her school years if we can get a good start on them now.
I was a little frustrated with one thing. When she had her evaluation done in our previous school district, they were SUPPOSED to have an occupational therapist there to do a full OT evaluation. The lady called in sick that day, so no evaluation was done and they just told me, Oh, don't worry, she'll get the evaluation done when she starts school. The statement bothered me then and it came back to bite us in the butt today a little bit. Apparently when they wrote up her MET evaluation report, their exact words were, "Due to past reports and parent concerns regarding sensory integration issues, it is recommended that Raya recieve an Occupational Therapy screening once she is settled in school." The problem there is the word "screening". When I met with them, they told me that they were recommending that Raya have an OT evaluation at the new district. However, because the report casually stated that they recommended a screening, the new district is not planning to do an evaluation unless the teacher and OT (neither of whom were present at the meeting) decide that Raya needs an evaluation for OT. They also said that at school, the OTs don't really work with sensory integration issues, so the fact that she's been getting OT not once a week but TWICE a week for the last 9 months because of sensory integration issues apparently does not matter to them. I have decided to just turn it over to the Lord though and if Raya really needs to have OT at school, it will happen. She is still going to get OT in clinic outside of school so we will continue addressing sensory concerns then.
Then there was the big issue that was the main source of my anxiety and dread going into this meeting: the G tube. I had requested last week that a nurse be present at the meeting. I specifically asked for the district's RN, whom I had thought was the district health supervisor. Apparently, the district only employs 1 RN and she is at one of the high schools. The health supervisor is not a licensed nurse, or at least not an RN. The school psychologist emailed me back last week and told me she was forwarding my request on to the health supervisor. When I got to the meeting and asked if she was coming, the reply I got was, "Did she call you?" Um, no, she did not. She also did not come to the meeting and neither did the RN. The best they could do was get the health supervisor on speaker phone to answer my questions about G tube emergencies and tube feeding procedures at school. This was the only part of the meeting where I had to keep myself in check.
First of all, I was informed that if Raya's tube gets pulled out, no school district employee is allowed to attempt to put it back in or even put a Foley catheter in to hold the stoma open until I get there. This comes from the assistant superintendent, who says it's a liability issue. When I asked what the district's procedure is, I was told that they would take her to the nurse's office (which should really be called the "health aide's office" since there is no actual nurse there) and they would lay her down, cover it with a sterile dressing, and call me so I could come put it back in. I asked if they realize that the stoma can start to close within 15 minutes, but really it doesn't matter because their policy is their policy. According to them, these are our options:
1. If I'm close enough to the school, I can rush there ASAP and hope that the stoma is still big enough to get the tube in without having to take her to the ER for a dilation. I guess I'll be staying within a 10 minute radius of the school during those hours.
2. If I'm not close enough to the school, they can call 911 and send her off to the hospital. This is not a viable option because A. Who would go with her? B. The ER may not know what to do about it anyway depending on where they take her. C. Expensive and unnecessary. D. Just not a viable option, period.
3. This isn't really even an option but the health supervisor said that they either have the parent come, send the kid to the ER by ambulance, or they just tape the dressing over it and the parent takes care of it when the child gets home from school. To which I had to bite my tongue, because are you KIDDING ME???? That would mean at the very LEAST a HORRIBLE and extremely painful and traumatic dilation procedure, and possibly even emergency surgery to re-open the stoma. Absolutely ridiculous and it makes me wonder how much if any real experience this person has with feeding tubes.
Because I don't want to bank on option 1 since I am not always within a 10 minute radius of the school, I told them that I would like to have a list of people who are allowed to come and at least attempt to get the tube back in if it ever comes out and I'm not able to get there fast enough. They agreed that as long as it was written in the doctor's orders, that would be fine. Thankfully, I have very kindhearted friends who are willing to volunteer to be my on-call tube putter-inners. Raya's support coordinator also asked if we could have our respite provider attend school with Raya since she's been trained on replacing the tube and they said no. Having a couple of people who can be called in case I can't come does make me feel a little better but I still think that the district has it backwards. Not that I ever intend to sue anyone, but I think I would be much more likely to go after the school district after having to sit through an emergency dilation procedure or surgery at the hospital because the school chose to do nothing than I would if they actually tried to put the tube in or at least put a foley in. If you ask me, they're doing nothing here but covering their own @$$es with absolutely no regard to the physical, psychological and emotional well-being of the child involved, or the parents who will have to deal with the long-term ramifications of the aftermath of a traumatic hospital procedure that is absolutely not necessary.
The health supervisor asked if Raya would be tube feeding at school. I told her that as much as I would like to say no, most likely she will be getting fed at school. Her motility is lousy right now for goodness knows what reasons, and we won't be able to use Farrell bags at school so that will probably mean slowing her feeds down even more. Right now it's taking an hour for a feed but we may have to do it slower than that, especially after how she did today with no Farrell bag for all but 10 minutes of 1 feed. So yes, she probably will be getting fed at school. This was the part where I had to stifle laughter. The health supervisor (who was on speakerphone, btw) was explaining that the other child in the district who is on tube feeds at school does things. (yes, singular. ONE other child in the district.) She said that all the schools have health aides that have been trained on tube feeding, so this boy comes to the office when he gets to school and the health aide puts the formula in his pump and gets it all set up and connected. If his pump ever beeps (which is probably frequently since he has a Joey) he goes to the office for the aide to fix the alarm and send him back to class. When the feed ends, he goes to the office and she turns it off & unhooks him. Then she said, "All the health aides have been trained for that. There's a respiratory therapist in the district that trained all of them about tube feeding." Anybody else seeing the humor in that?? I was unaware that respiratory therapists were experts on feeding tubes and pumps, but okay, whatever you say.
After they hung up with the health supervisor, I said, "I understand that the health aides have been 'trained' on tube feeding, but I won't be comfortable sending Raya to school until and unless I am able to come and train the health aide specifically on Raya's tube feeding." They all thought that was reasonable and wrote it into the part that will be added into the IEP with the medical section. As much as I would love to just not send Raya to school on the pump, with the way the school schedule is compared to her current feeding schedule, it just doesn't match up. I would have to either feed her 2 hours earlier than she's currently getting fed or else feed her 2 hours later, and I don't feel like either of those options is a good idea right now. That's a pretty drastic change and her body doesn't usually handle changes very well.
Last but not least, we addressed Raya's food allergies and eating habits. After some discussion, I asked them to just write into her IEP that she is not to eat anything at school except for what I provide her with. I also asked them to write in that they monitor her closely to prevent her from eating other kids' snacks, including things that are on the floor, and that if there is ever an accidental ingestion they are to notify me immediately and let me know what and how much she ate. Just for the sake of keeping track of calories, I also asked that they somehow let me know how much of her snack she eats. Some of this stuff might seem very common sense, but if there is ever a day when her teacher is out sick or if they get a new aide in the classroom, we are just better off having this all written into the IEP so that it's official.
As we were leaving the meeting, I mentioned again how unhappy I am about the district's policy and what that could mean for Raya. I know the evaluation team members are not the ones that can do anything about it, but just for good measure I described to them what a dilation procedure is and that according to our surgeon & a couple of the doctors I've talked to, the ER will not use any pain medication or sedatives during the procedure. They cringed while I was describing it so I left feeling like I had at least made my point.
All that's left to do before she can start school is get written orders from the GI doctor about G tube protocols (which I'm anxious to hear her opinion about given the school district's policy) and I have to fill out & turn in her registration paperwork. If I can somehow get all of that done by Friday, then she can start school on Monday but we'll see if I can pull that off. It's a pretty busy week so I don't know if it will happen or not. Like I said, overall I'm happy with the IEP and I feel good about sending her to preschool, but the G tube aspect of it is hanging over my head like a big fat rain cloud right now. Despite our efforts to prevent it, this kid just has a knack for getting the tube pulled out. As much as I hope and pray that it never happens at school, I will probably never leave my house while she's at school just in case it does happen because just the thought of having to take her to the ER for a tube pull-out infuriates me.
On the way home, she fell asleep again and was sleeping like a rock when I got her out of the car and onto the couch. She NEVER sleeps on her stomach unless she's really really not feeling well or she's sleeping really hard, and I think today it was a combination of both.
Hard to believe this sweet girl is turning 3 in a few days and will be heading off to school already. It makes me sad that she has to start school so early, but what makes me more sad is the fact that I know in my heart that she needs it and I need it.
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