A Fork In The Road

This post is long overdue, and I apologize to my family and loved ones for my prolonged silence here. I have to own up to the fact that I made a conscious decision to make sure I was coming from the calmest place I could be at regarding certain things before I undertook this particular topic. My aim is to be mostly descriptive.

A couple months after the start of the last school year for Tony, his teacher let me know that the high school district he is zoned for does not do one-to-one aides for their special education students. I called their special education director, who confirmed that and agreed to meet in November with our son’s educational advocate and myself. He also invited their district school psychologist to this meeting.

One of the most memorable things she said upon hearing about my involvement as his aide was that “We’ve never seen a problem that a parent can solve.” The next thing they stated they wanted to do when they found out that he still doesn’t generalize following safety instructions to people he’s not familiar with was that their preferred placement for him would be ACES. For those of you who don’t know, this is a level D facility that requires parents to agree to use restraint before they will accept students. Typically, this is where special education students with certain aggressive behaviors that can’t be safely managed in the school system are sent.

Tony is not aggressive. And point blank, not a single professional in the school district he was in the past three years felt that was an appropriate solution or placement for him, and this includes a teacher who used to work at ACES within the district and their middle school psychologist. We have had more than one BCBA recommend against ACES for our son, as well as his current advocate and other professionals, as being a placement that would deteriorate his behavior and his skills. For our son, whose primary motivation for eloping or refusing to try something initially at this time is fear based, if he refused to get off the bus at an ACES facility because he was frightened, they would drag him off. I know this would be their approach because I met with one of the ACES school psychologists and discussed his case as part of my research for the discussions we were having with the high school team. The moment that happened, Tony’s fear would only increase and we would see escalating fight or flight behaviors. This is why we had been working on exposure therapy based techniques.

As some of you may remember, when Tony’s therapy team decided a little more than three years ago that he was ready to enter a public school environment, initially we had offered an RBT to his middle school district since he struggled to generalize safety instructions to people he didn’t know because we didn’t want him to be dependent upon me in that environment. Their special education director initially approved it, and the district attorney killed that deal, stating that it might violate school confidentiality laws for other students since this person wouldn’t be a district employee. At which point, I was the only person left we could offer to the middle school district as a support that Tony knew and the district team approved that, with the director telling me I was not the only parent they had who was an aide to their own child.

Once upon a time, it took Tony about three years to get enough comfort with people he saw every day to generalize safety instructions to them. His current time is about three months for someone he sees daily, about 9 months for someone he only sees once a week. By the end of this past school year, he was working with other aides calmly for up to 5 hours a day, but he still wasn’t ready to go anywhere without anybody he knew for an entire day without me. Point blank, if we leave him somewhere he’s not familiar with for 8 hours with someone he doesn’t know, it would scare him badly enough to provoke fight or flight based behaviors that could make a person think he needs a level D placement. If his needs are met though, he’s safe to work with. I can and do recognize it is an area of concern that he still is too afraid of people he doesn’t know to respond to them that way, but both his previous teacher and I felt like at his current rate of progress, he was going to achieve that within the next couple of years. Until then, he would still need an aide he knew.

When his advocate and I sat in the final high school transition meeting, we found a group of individuals who are no doubt caring professionals, but were completely unopen to any sort of accommodation that would have allowed us to meet his needs within their school district. They said it was unethical for me to be working with him in a school. They wouldn’t even approve for me to volunteer in the classroom, nor would they commit to a reduced school day to allow him time to build up comfort with the environment. His developmental pediatrician had written a letter advocating for me to be allowed to start with him as there was no district staff at the high school he was familiar with, and a scoffing comment was made about that by the high school team. His special education teacher for the past two years also wrote that she felt it would be necessary and beneficial, and that the high school team would be able to transition me out likely by the end of the year (which was honestly what I wanted, I feel like he needs to be able to get used to existing happily in public spaces without me).

The special education teacher representing the high school district at the meeting made a comment that they had no plans to take Tony out into the community…her exact words as I recall them were “Oh no. We’re not going to take him out into the community.” Community participation for all students was part of their district’s stated programming for the students in the class they would have tried to put him into if I wouldn’t initially agree to a D level placement. I take Tony in the community all the time, quite safely in fact, everywhere from sensory friendly movies to malls to medical clinics to stores to pretty much most of the places they would go. He needs extra preparation work for anything with larger crowds owing to the severity of his sensory differences, nervousness around larger amounts of people, and fear of new places, but with that work, he already is actively participating in the community. And I didn’t ask them to do that preparation work, I made it clear I would undertake that on myself outside of school hours prior to any outings.

Tony and Andy, Tony and I, the last two sensory friendly movies we took him to.

The thing is, there isn’t actually anything unethical about a parent working with their child in a school district. As Tony’s DDD support services coordinator pointed out when we were discussing this situation, there are general education teachers who have their own kiddo in their classes on a regular enough basis. This is true. Our daughter in fact had that happen two years in a row in her public school class. And, there are medical necessity precedents for parents being with their kiddo as an aide, and that’s how we viewed this for Tony. And, since I wasn’t the only parent aide in the previous district, it certainly has been done before…in other school districts. Bottom line, based on where he’s at with his progress, they could have phased me out before the end of the school year and kept him in the public school where he had a more expanded access to the community and a classroom of his autistic peers, but they were completely unopen to anything other than either him starting out at a private level D facility or him going cold turkey 8 hours without anybody he knew…something they were advised would provoke behaviors they wouldn’t see otherwise.

Compassion for his circumstances would have cost them nothing. Because of the particulars of his case and the position of the middle school district’s attorney, Tony literally doesn’t know what it’s like to be without me and that needs to be handled with sensitivity and delicacy with the type of gentle fade out we were working on in the middle school because of the interplay between his cumulative diagnoses. My salary is cheaper than fees for the level D facility they recommended, so in this era where school districts are having budgeting shortfalls, it doesn’t even make sense unless they were trying to push me to pull him entirely. And, I think if a parent of a kiddo with more specialized needs wants to partner with a school district in a way that actually meets the child’s needs (and I got the highest available job evaluation marks from the school all three years I was assisting in that capacity), I don’t think a district should be so entrenched in their own ideology that they would actively pursue something that harms the disabled individual just to avoid that parent’s involvement. I just don’t have anything else respectful to say about their handling of this situation, hence how long it’s taken me to speak about it. We debated getting an attorney, but opted not to because if we won a medical necessity argument (which was definitely within the realm of the likely given the particulars of our son’s case), we would have been going into an environment made even more hostile by a lawsuit. And that would harm him, he’s sensitive to the things others emote around him. An attorney might have opened a door, but it can’t make them see his needs and at the end of the day, I don’t think it was even about what his needs genuinely are for them, else there would have been a different decision made.

This is where I am going to give an opinion about what I think motivated their insistence with the caveat that facts and opinions are not the same thing: I personally think it is because that district didn’t want a parent of a disabled student hearing about which aides don’t want to work with which students, and didn’t want someone who might see any possible corners they could hypothetically be cutting as regards to best practice and legal requirements. To put it rather delicately without trying to attack anyone, I did not see laws being broken at his middle school. But I had seen one that was being broken in his developmental preschool before we pulled him from that environment, so I know it can happen. And, I did know of aides who didn’t want to work with certain students and refused to at the middle school. As a parent, I am pragmatic about that though and I never once instigated a parent to parent reach out. I recognize not everyone feels comfortable working with certain needs, (I as a parent have had therapists in the past refuse our son’s case) and at the end of the day, it is better for everyone involved including the students if whoever is working with them feels comfortable to do so. I had three aides other than me who worked with our son that didn’t have any problems working with him, so I knew that what we were asking was achievable. He was just at a delicate point in his progress where switching schools successfully still required someone he knew.

We have worked with him to get some very nice skills when he is uncomfortable with something. Last week, Tony was able to get through his first full dental cleaning without anesthesia…all components. When it came to the suction part, he gave a verbal “uh-uh” that I had practiced with him. He has severe apraxia, so he will only ever likely be able to do a handful of verbal words successfully. The dental tech pulled back and waited for him to be ready to try again. If you let him work at his own pace with these things, he’s very safe. There was no elopement. There were no moments of physical contact. He’s not aggressive, and you don’t reduce fear by putting a kid in a facility that specializes in educational programming for aggression. Just saying.

Right now, we’ve applied for ESA (which is the empowerment scholarship). I’ve taken time to help support Tony with the fallout. He was devastated. He felt like he was trying his hardest, moving as quickly as he felt comfortable, he had grown to love school, and he felt like he got handed (which he did in my opinion also) a “your best isn’t good enough for us to see you as worth the time to work with here” moment. He was struggling seeing the point in working on his goals for a few weeks. He told us that he didn’t feel comfortable going anywhere 8 hours without someone he knows yet. I purchased a tent for his bed since it was one of the things he loved most about the sensory room at his previous school. And I’ve just been focused on helping him recognize he’s still loved, he’s still making progress, and in our home, we see his needs and give it the prioritization we should. When he feels like people recognize his needs and will let him try at the pace he feels comfortable trying, he continues to build skills and that’s what we’re going to continue to focus on.

We had initially applied to retain him for another year in the eight grade after the high school transition team gave us their verdict (with me not returning as his aide and him working with the other three ladies who felt comfortable with him), with the hope that we could set up monthly meetings with Tony and the high school staff to build his familiarity with them, and then two things happened. Budgeting shortfalls pushed the school district he was in to cut special education funding to call for a four students to one adult staffing ratio in their special education classes. And, I was informed, after pushback from the high school team, the school district he was in decided to eliminate one-to-one aides since the high school district absolutely will not provide them. And, we decided at that point to pull our request, as it isn’t safe for Tony because of his impaired risk assessment and impulse control to be in a class with only a four to one staffing ratio.

I recently read an article from channel 12 news talking about the growth in requests from individuals with significant disability for empowerment scholarships. Well, situations like this may be part of what is fueling that. In the interim, we are just going to keep working with him on his educational and therapeutic goals. Currently, he’s doing jigsaw puzzles up to 143 pieces independently (one of his digital apps uses that as one of the piece number options). He can read certain sight words and is starting to use a speech device profile that has some sight word only buttons. He’s back to giving everything his best effort, and we’ll just keep loving him and trying to help him overcome his distrust of people he doesn’t know in a way that supports his growth in that area rather than letting our family be pushed into something that will likely deteriorate his condition in a way that, according to his advocate, he might never recover from.