Transition Plans, Preschools, Advocacy..Oh My!

The kids are relatively quiet and peaceful and I have a rare daytime moment, so here's the third part of the update that I promised.

In addition to everything else we've been juggling (and contrary to accepted math, 2 kids DO outnumber 2 parents), we've been trying to negotiate the preschool transition for Hallie. What this amounts to, at this stage, is figuring out the extent of the misinformation and outright lies the representative of the agency handling the Philadelphia County Intermediate Unit has imparted to us; what we are entitled to receive by law; and how to do the best thing for our kiddo.

Here's a bullet point list of the lies we've heard so far:

1. You are not allowed to see the preschools/Head Start programs before your daughter is placed in them. This lie was oft repeated to us by the now-replaced Service Coordinator, even when we called her on this. Her supervisor's response: well, parents don't usually want to see the schools so she probably never dealt with a situation like this before. WTF!! This is a service coordinator who ostensibly has in excess of 20 years of experience. I do not for one minute believe that no parent ever asked to see a school before, particularly in the area in which we live (and which she apparently services), which is populated by many well-educated and professional people (not in any way is this a prerequisite for parents who, by nature, I think, want the best and safest educational system for their kids).

2. You are on your own where it comes to medication and dealing with your child's chronic medical conditions. The Intermediate Unit (3-5) only provides for the child's educational needs and goals. Not true at all! There is something out there called Chapter 15 and the school system must include a Section 504 plan for dealing with a child's medical needs that get in the way of education. Here is a link to a very good publication on the issue. Moreover, the education system must do this at no cost to the parent. They cannot even just tell us to contact our insurance or Medical Assistance to get this done. In fact, it needs to be written into the IEP (Individualized Education Plan) so that, if the child loses insurance or Medical Assistance, it needs to be provided at the cost to the school system, and not the parents. So telling us that we needed to find someone to run meds over to wherever Hallie is placed and/or not educate her at times she needs meds (what would this be? when she's sleeping? Seriously. She takes prilosec and zyrtec an hour before breakfast and reglan a half hour later; she takes reglan and axid before lunch; she takes prilosec at about four to five pm. She gets albuterol when she's sick as frequently as every four hours and as a rescue med if she has an asthmatic incident).

Even more interesting is that I just had a conversation with one of the advocacy folks with whom I've been in touch (It's now been quite a few days after beginning this post...I'm finally getting back to it on March 10th. Life really is taking a toll on my blogging!). The very nice parent advocate informed me that the agency handling IU here in Philly does, with prodding, provide 'shadows' and that the law requires them to do so since, by law, the IDE MUST address each child's unique needs in a way that provides him or her with fair and accessible and equal educational opportunities that will allow him or her to contribute productively to society by the end of the educational process. Makes sense to me, and no big surprise that the folks at the IU coordinating agency lied about this one, too. So now there's something else for us to push for...

3. We are not responsible for testing her for PDD-NOS or any other spectrum disorder. We only have a part time psychologist and s/he is very busy. Lie. Total lie. If we request this, psychological assessment must, by law, be done. Period. They cannot even demand a doctor's note for this.

4. Hallie turns 3 in June. Head Starts begin in September. We'll make up her services then since she's no longer qualified for the Birth to Three program once she turns 3. Lie. Not that they won't try to weasel their way out of providing extended services.

Anyway, you can see why I have about zero level of confidence in the agency that handles (mishandles?) Intermediate Unit services in Philly. So, first we got reassigned to a different service person. Of course, the service person aims at providing no services. Apparently, they handle transition, place the kid in a program convenient to them (and not necessarily best for the kid) and then the parent needs to live with whatever the placement is, or go to dispute resolution. Not a good system.

The sum total of the work this new person has done for us is: 1. send us a xerox of outdated numbers to call for different school/head start programs so that we can visit them on our own (no one has called us back yet from the several I called last week. Maybe I'll just show up). 2. get us evaluation dates for the testing and the psychological testing (which miraculously became available to us when I quoted the law to her). I expect that, unless we mediate, I won't actually meet this person.

Anyway, needless to say, this has been an enormously frustrating experience already, and Hallie has yet to turn three. And it's eaten up hours and hours of our time. I've been on the phone with one or another advocacy group numerous times; have spent considerable energy on perusing the laws concerning Special Education and disability rights here in Pennsylvania; and have been calling around to different preschools. The Head Start brochure listing the name of the administrator who handles special needs kids at various centers has proven utterly useless and no one has called us back from the central coordinating office (if there is even one; all we have are numbers). We did make appointments to tour three preschools on our own: the first is a year-round reverse inclusion program that is where kids with more serious IEPs get assigned. The second is a daycare/preschool facility that is mostly for government workers that is located a block from Sharon's office that takes a couple of Head Start or Special Needs kids each year; and the third is a private preschool that we would end up paying for out of pocket.

The first seemed utterly inappropriate to us in terms as a place for Hallie. First, in terms of security--there was none of which to speak. We rang the bell, and instead of asking us to identify ourselves via intercom, the person in the office just buzzed us right in. There was a sign that read "Please sign in at Main Office" but no safeguards (like a security person, even) to ensure that one did so. We could have wandered around for a while before being noticed.

Second, all of the therapies are done in groups and in the classroom. When I inquired what the protocol was when a speech therapist was in a classroom with one student who was apraxic, another who had feeding issues, a third who stuttered and a fourth who dropped endings, I was told that they would all be handled at the same time as a group. This was not an answer that made me confident that Hallie would receive the services that would actually work for her. Then we asked about feeding support. The teacher told us that the teacher and her aide (the ratio is 1 to 10, with only the teacher having any educational degree that would suggest that they should be running a classroom) would provide some hand over hand meal support. Just then a little boy ran up and said "Miss B., I'm hungry!" It was about 11:15 at that point and Miss B. asked him if he had eaten breakfast (which is provided at the school). He said "no" and she told him to wait until lunch. OK--so I have several problems with this: if the teachers are providing support, would they not know that he had not eaten? Where were they when he was not eating his food? Also, what would one do with a child like Hallie who simply would not eat on her own and who doesn't know how to say she is hungry, if she even feels hunger (which we are not sure that she does. Certainly the several days in a row this past week when her total intake could not have exceeded 500 to 600 calories do not lead me to believe that she feels hunger. Since there is no pull out therapy, one could reasonably expect our kid to not eat breakfast and lunch on the days that she is in preschool were we to accept this as a placement (which we will not).

Third, the entire setup of the place transmitted a sense of barely controlled chaos. There was no productive learning going on in any formal sense of the word in any of the eight classrooms that we visited. We were assured that there was a formal group time when children first arrive, but given that the schedule is staggered (to allow children to go out to play at different points during the day), it is odd that in not a single instance did we see story time, an art session, music, etc. Instead, the kids were in various clumps scattered throughout the rooms, some in therapy in groups and others hovered around blocks or computers or the like. The teachers were fielding questions from kids and not participating in play with them. And in the case of the kids in the playground, we witnessed three or four young boys pummeling another in the corner of the yard while the teacher (the only one who was seemingly supervising this play) was standing half a yard away staring into space. We have no idea if the pummeling was playful wrestling or playground bullying but, as a parent, I'd want a teacher to suss out that situation and not just fail to notice it.

So it was good to visit this place since it's important to rule things out and move on. And so we did. The second school was the absolute inverse of the first. Security was fabulous (it is, after all, located in a Federal Building) and the teachers were not only clearly engaged with the kids but actively involved in teaching them stuff. Order reigned supreme at every juncture: kids coming in from outdoor play wash their hands (and stand in line to do so); children don smocks and sit at little tables and await their lunch (and I bet you they don't tolerate food throwing and other skills at which Hallie now excels). Meals are all provided and children must eat the meal of the day, with reasonable substitutions made for medical conditions (like allergies). There is a lending library of books and all of the toys are new and clean. So what's the problem with this place? First, Hallie really would need an aide since eating and toileting would be an issue here. The program is a five day a week, six hour a day program and she could not handle this on her own. And second, getting in. The waiting list can last about two years for typically developing kids whose parents don't work for the US government. I have no idea how long it is for special needs kids and whether there is a way in that circumvents this wait. We're going to try to find out, though, since this would be a great program for her when she is four. She needs structure and actually thrives on it once she is taught what to do and how to do it. (For example, her purple dinosaur teacher, Barney, has taught her to clean up her blocks, which she now does fairly regularly).

Our third visit last week was to a local arts- and music-oriented preschool program that just introduced a transitional, afternoon program for kids who are beginning the move to the preschool level. The program places an emphasis on social communication, which is one area where Hallie really needs work. And the school has an explicit mission statement of inclusiveness of children with special needs. The school is quite close by (about seven blocks away), which is an added bonus. The director knows A LOT about special needs kids and about preschool education in general, which gives us a great deal of confidence. She did, however, insist that Hallie have a one-on-one shadow to assist her in the preschool context, and we agree that this would be a good thing. Hallie does not have the easiest time with transitions (she has awful, meltdown-level, sometimes vomit inducing separation anxiety fits) and she lacks the capacity to comfort herself. She also cannot really take care of her own needs, and often is not even able to express these needs. When she attempts speech, it's often quite hard to understand her (she may be about 30-50% intelligible to others and about 50-70% to us) and she gets very frustrated when we cannot figure out what she is saying. So, an aide who can help facilitate transitions, communication, self care (like feeding and helping toilet train, should we ever get to that stage in preschool) and especially someone who knows ASL would be great. Now we just have to get one approved by insurance or Elwyn and we're set to go. They'll take Hallie into the program whenever this happens. We hope it's when and not if.

So where do we stand now? We will continue to explore the Head Start/Learning Tree programs that are well-rated and nearby (we're not particularly interested in bussing Hallie across Philadelphia, but this is a moot point because only the reverse inclusion and all special needs oriented programs provide transportation). But in the meantime we are going to make sure that we have a parent advocate in place at the IEP and that they review anything that Elwyn produces, paperwork wise to make sure that Elwyn is not in violation of the law. If we need to hire an attorney or go to due process or mediation, we will. And we'll make sure that we know what Hallie's rights are and that they are respected. By law, the county must provide our daughter with a free and appropriate public education that meets her unique special needs and if they cannot do this, they will have to make sure that they pay for private programs/personnel that can accomplish these goals.