My name is Stephanie K and I live in Castle Rock. I am a nurse practitioner here in Colorado and a mom to two amazing little kids. One of my children, my daughter Emerson, who is about to turn 3 was born with a very rare genetic disorder called TUBA1A. There are about 200 kids in the entire world with this disease which majorly impacted the building of her brain in utero. We moved to Colorado when she was three months old, before we had her diagnosis or knew anything was wrong. Her care here has been wonderful, her pediatrician was quick to get her referred for an assessment through Child Find to set up Early Intervention services which she started in January of 2021, while simultaneously completing a brain CT, MRI, EEG, Echo/EKG, 3 swallow studies, an Upper GI series, two Triple Scopes with Pulmonology, ENT and GI, and extensive genetic testing. When we first learned of her diagnosis, we were told it would be unlikely that she would ever walk, talk, maybe even never know her name. Her medical story is long but I wanted to give you a background about her before addressing my concern, and our story. She is now a happy, sweet, smart and loving little girl. We started three therapy sessions a week when she was 8 months old and has been in physical therapy, occupational therapy and speech therapy ever since. She started with sign language but now has close to 100 words (altered sounds for many), walks with a medical gait trainer or walker, and certainly knows her own name, can count to 10 and is a giant goofball. We have worked remarkably hard as a family to advocate for everything that we can for her, striving to improve the quality of her life. She does not have a known life expectancy, we have no idea what the future holds for her or for us, but we walk this journey day by day making sure she has access to everything she deserves to.

 

As she is approaching her third birthday, her early intervention services transition to Douglas County School District and we have started that process. We also got her established at NAPA Center in Centennial which is an incredible neuro rehabilitation center to do both private and school district therapy in conjunction. It is important to me that Emerson attends pre-k for the social aspect, for learning to participate with her peers and engage with her community.

We never expect to have a baby and find out months later a surprise diagnosis that was not picked up in pregnancy and have your life flipped upside down. But with that diagnosis comes a huge responsibility for me as her mom, to advocate for her along her journey. Not all of us are so lucky that our children can come home from school and tell us how their day was, if they felt safe, or cared for, if their diaper was changed in an appropriate amount of time, if she feels that she can access all of the things in the room that she needs to be able to, if she is treated with kindness and respect. Academics are not the priority for her, humanity is.

Months before her scheduled IEP assessment I was connected with Jenny Yeager, a case worker in DCSD who works with Child Find children and placement as they enter the pre-k program. She has been an incredible resource as has gone above and beyond to ensure that I felt good about sending Emerson to pre-k. I requested to tour some schools that had come recommended from other moms in our community with disabled children, that were close to my son’s charter school, or that seemed like they might be a good fit. There are 72 pre-k rooms in Douglas County. My goal was to see about 5-8 of them, a very small percentage. Jenny helped set up tours at Buffalo Ridge, Soaring Hawk, Castle Rock Elem., The ECC South and Copper Mesa (our zoned neighborhood school does not have a pre-k room). All of these schools welcomed us with open arms. We set up preplanned visits where the teacher, ECSE and school were contacted and communicated with all through Jenny. Most of our visits were 15-30 minutes. As a parent of a disabled child, it is important to see the room, not only the accessibility, but does she have to take a ramp separate from all of her peers, or is the room on a level that she can “walk” in right along her friends to help her feel included. Is there space for her gait trainer, is the room organized and clean enough to protect her. It is not just about meeting accessibility requirements by law but actual ease of access to supplies in the room, the cleanliness of the room and so on. More importantly than that, to me at least, was meeting the staff and feeling the culture and climate of the room. Watching the teachers engage with their students and how the students responded to the environment. Usually I would speak with the main classroom teacher for less than 5 minutes, and the ECSE for maybe 5-10 minutes and the rest I would step back into the corner and observe the regular schedule of the day while students carried about their normal routine. Out of the 5 schools I attended, 1 student said hi to me, which was sweet, the rest never even looked my way or realized I was present. I would look at the playground to see physical components and then thank the staff and leave. My daughter never attended with me. Some visits were with Jenny and some were just me.

It came time to see the final two schools, Meadow View and Clear Sky Elementary located in The Meadows, but near my sons charter. These two along with Soaring Hawk were the best possible location in order to coordinate morning drop offs so I was looking forward to getting a feel for them and choosing prior to Emerson’s IEP assessment. Jenny contacted both schools, as she had with all the prior schools to get us scheduled. Clear Sky gave us a 9:15 “appointment” for our site visit and Meadow View responded that I was not welcome to come when students were present, that if I wanted I could come on a Friday. (Pre-k is only M-Th, 2.5 hour days). Jenny called me and notified me. We both felt this was odd and I explained that if I could not see the room actively in use we would just remove this school from our list of choices. Jenny re-contacted Meadow View to clarify what my request was and was eventually given a time of 10:00 am, the same Monday as Clear Sky, right after so that they could be back to back. I arranged child care and planned to visit the final two schools on our list. At the end of the week prior to the scheduled visits, I was notified that Meadow View had cancelled my site visit again and returned to the, “Come on a Friday with no students” demand. At that point I figured I would just go see Clear Sky and go from there. The night before my visit to Clear Sky, I got an email from Jenny notifying me that the teacher from Clear Sky had cancelled my visit as well, or rather “was instructed to cancel my visit”, and that I could also come on a Friday. I was simultaneously heartbroken and infuriated. It was clear that the teachers had been in communication about my site visit and I could not understand why I was not being welcomed as I had been already at 5 other schools.

Jenny told me that she was going to elevate this to DCSD leadership, to Annika Barton, Assistant Director of the pre-k program to get clarification of if something had changed policy wise. I also had spoken with Annika in the summer of 2022 via email and phone to establish a relationship and ask lots of questions that a mom with a disabled child has as they approach the school district for the first time. She assured me that we would be able to take steps to see rooms, choose a room (if space and accommodations allowed it), make this a positive and smooth transition from early intervention. Our conversation made me feel so much better, she cared, she was helpful, patient and kind. She got me connected with Jenny who has been working closely with me to make this all happen. Both were problem solvers, attentive and thoughtful. The push back from Meadow View and Clear Sky is the first time I have encountered lack of transparency, and what felt like bias and discrimination towards a mom and her special needs child, with no clear answers. When the situation was elevated to Annika, it was reported to me that she was very surprised that I was told I could not conduct a site visit (as I already had done 5 times in the district). She reached out to Eric Elmore who is the ECE Coordinator for these schools to get an understanding of what happened, and to also instruct him that I should be permitted to visit. He was told to tell the two room teachers to connect with Jenny to re-schedule my visits. Over close to a month later, to my knowledge, those teachers never reached out. Jenny asked if I wanted herto contact them to reschedule the tours for the third or fourth time, to which I declined. At this point, the teacher’s behavior and choices, asking Eric to support them in saying no, and taking away my ability to the see the room in a manner that is constructive to making a decision for Emerson’s education, took away Emerson’s ability to go to these schools in my opinion. Yes, I could still go tour them and enroll her there at a technical level. But I can guarantee you that no parent would feel comfortable at this point sending their child to a room with a teacher working hard to restrict access and limit a parent’s ability to understand the engagement of the room, prior to ever meeting the parent or student. These teachers and ECE coordinator have lost my trust and respect. There are many red flags with how this unfolded and the intention behind the teachers giving me the runaround, in what felt like the hopes that I would just give up, reducing the likelihood of having an SSN (Severe Special Needs) child placed in their room (not all rooms get an SSN kid placed in them).

I understand that having a disabled kid in your room is hard, it creates a different dynamic and challenge, but you absolutely cannot discriminate or push away a parent that might want to choose your room. I am a tax payer in Douglas County and have the right to open enroll her to any school, pending space and availability, wait lists and so forth. I was denied the ability to have a fair site visit in these rooms, a functional site visit instead a view of an empty room. The opportunity for Emerson to attend has been challenged by Meadow View and Clear Sky. This is unacceptable, inappropriate and flat out disgusting behavior.

At this point, Emerson has had her IEP assessment and I have chosen 1 of the other 5 schools I was permitted to see. It is not about Emerson anymore. It is about all of the other families with children who are disabled who will be coming to Douglas County School District and trusting them to provide unbiased opportunities to make an educated decision for placement of their child. It felt as though these two schools, and teachers, were willing to push back and back and back so that it would be unlikely I would send Emerson there. This is discrimination. When they were given multiple opportunities to reschedule, when instructed by the assistant director to allow it, there was never an apology given, nor any attempt to rectify what happened. Again, hoping I might just disappear.

I have asked Jenny for Douglas County School District’s written policy on site visits. I have been told there is no formal policy. This makes Eric, very new in his role, supporting his Meadow View teacher because she said no on her own choice, a bit more understandable on his end. So rather than asking his superior, or anyone, what the parent’s rights are, my visits were unjustifiably cancelled at the teacher’s request. You cannot have teachers in rooms who openly have bias against families with disabled children. 

My intention here is to turn this disgusting event into a positive. For us and for other families with children who cannot advocate for themselves. I have thought for a while prior to drafting this email about the possible push back, and attempted to create a solution for all of those possibilities.

There needs to be a uniform district wide policy in place that:

A) Promotes equality for disabled children of all need levels; Severe, Moderate and Mild Needs

B) Protects parents/guardians’ rights to have appropriate access to site visits

C) Protects teachers/staff and student’s safety

D) Protects student’s privacy

We cannot expect school district staff to make uniform decisions across the board without policy to support them and the parents simultaneously. There should not be a “gray area” on when a parent can visit. If a parent can come volunteer for a Valentine’s Day party with other students present, then a parent needs to be permitted to have an opportunity to evaluate the room’s layout AND engagement, with students present.

In thinking of steps that can be taken to each of these points, please see below:

• A) Promotes equality for disabled children of all need levels; Severe, Moderate and Mild Needs
  •No child should be restricted based on the level of need to evaluate the room unless the classroom is unsafe for said student. All SSN kids have a right to be in a room regardless of it the teacher “wants it”.
  •Follow established guidelines already in place to how many of each category need student can be in each room
                                                                             i.      It is fair and understandable that if there are already 2 SSN kids in one room, it is not safe to add a third. This is why I toured five schools, ideally 7, to have backups based on placements who come before Emerson’s turn for placement. I respect this policy already in place.
• B) Protects parents/guardians’ rights to have appropriate access to site visits
  •Uniform policy will allow all parents, of all socioeconomic status, race and ethnicity to have access to evaluating the room
  •Some parents may not have the time recourses or energy to advocate as hard as I have- a uniform policy will remove barriers to those who can’t send 5 page emails ;)
  Again, there are 72 rooms, that is 72 main teachers, 72 assistants and close to 35 ECSE and OT staff. With appropriate steps taken, parents should not be given a different answer from each school based on the teachers own opinion that will inevitably vary with this many involved.
• C) Protects teachers/staff and student’s safety
  •Site visits should be planned in advance with teacher and staff notification
  •Parents must access the school through the front as all visitors do, sign in, give copy of identification
  •Consider background checks – this seems more than necessary since parents do not need this to volunteer for a classroom party, field day, or so forth. But, in trying to think of every reason I could be told this policy wouldn’t work I wanted to give as many solutions as possible. For example, I am coaching my son’s soccer team with Colorado Rapids. I was required to complete a free background check and safety course in order to be able to be a volunteer coach. I can assure you that parents who are touring schools months before even attending, would not mind taking an extra step to promote safety in our schools.
  
  D) Protects student’s privacy
  Multiple releases are signed at the beginning of the school year. Permission to be in photos and the yearbook, permission to apply sunscreen, and so forth. Photos posted to the school website by parents who signed releases are public. An addendum could be added to sign knowing future parents may be present in the room, who are planned and known about. Do we require a release that allows parents to be present to volunteer for a party with other students in the room? Not to my knowledge (and I have volunteered for my sons’ activities in the class), so I do not see how a future parent would have any more risk of exposure to student privacy protection than a regular volunteer or parent of another child dropping off a snack or attending a celebration.

I know that this is a complex process and that creating legislation is challenging, time consuming and a ton of work. I am here for it. I am going to be a parent in DCSD presumably for the next 20 years. I am not here to cause any more hardship for Emerson than she already faces. But this experience was a “slap in the face” reality check of the discrimination she will unfortunately face for the rest of her life. I will continue to advocate for her for both easy and monumentally challenging parts of her life. If I don’t advocate for her, no one will. If I don’t advocate for future families trusting the school district, more families will be hurt. This is an opportunity to make a constructive and positive change in our district that protects teachers, staff, parent’s and student’s rights.

Douglas County is one of the most affluent school districts in the state and nation, and yet we still face bias and inequality at the sole discretion of a teacher’s opinion, and even the desire to drag other teachers and schools down with her.

Uniform policy can reduce or even eliminate this.It is not a matter of it can be implemented, it is a matter of what do I need to do to make this happen.

                I appreciate the time it took you to read this lengthy email, and to think about what happened here. Emerson is a precious, kind, smart, funny and remarkable human. She deserves every opportunity, she has taught me and my family so much about life, life’s expectations and the reality of what we think is guaranteed. She has worked for everything she has and I have worked to advocate for her through every hardship she has faced. I have advocated against a g-tube, allowing her to continue to support her oral motor skills safely, her team at Children’s Hospital now agrees, she does not actually need a g-tube. I have advocated against medications that would have suppressed her bright personality and taken on years of dietary changes as trial and error to find a root cause, which again her team at Children’s is now in full support of. If I just say “ok” to everything laid out in front of her, where would she be? She is beating the odds, she fights like crazy to do the things you and I do without even thinking about. I am here to fight for her, and her peers. Will you please help me?

I can be reached most easily via email but am happy to meet in person or discuss over the phone if need be. I look forward to hearing from you and I am open to any ides or feedback you have in regards to this. I am also reaching out to the House Representative, The Director and Assistant Director of the Pre-K program, and Mrs. Kane, the Superintendent, to start. I am excited to hear what the next steps entail. My long term goal is to implement this as the county level, then the state level, then take it to the national level. I look forward to working together to improve the rights of our disabled children in the district.

Please consider signing this petition to support parent’s right to a fair site visit, planned, on a good day for the teacher, with safety checks in place. 

Thank you, 

Steph