Meet Sequoia
This girl loves to have fun! One of her favorite things to do is sing Lady Gaga karaoke, with dance moves and all. She enjoys relaxing, doing puzzles, and reading books. Sequoia also has a large collection of dolls and loves to dress up the doll babies, never forgetting to pack up their little diaper bags! (It’s super cute.)
​
Sequoia LOVES music. Not only to dance and sing to, but she listens closely to lyrics and if she doesn’t understand their meaning, she will ask for an explanation or look it up. She truly enjoys all aspects of a song and artist.
​
When someone does something nice for her it will never go not noticed. She is so appreciative! I tell her all the time about her community’s support for her and I can see her heart filling up as she rubs her hands in her face. She is so generous and always chooses to spend her money on others because doing special things for others brings her joy.
Sequoia also has a very empathetic heart. She knows what its like to struggle with anxiety, medical issues, and feeling as she states she doesn’t belong. She feels so much for others because of her personal experiences and journey. Her goal is to make a difference herself by encouraging peers to use communication tools to support their needs.
The journey.
My name is Kelly and I am the lucky mother of Sequoia. Sequoia has a rare genetic disorder known as Prader-Willi Syndrome (PWS). The most challenging characteristic of this diagnosis is insatiable hunger. This hunger causes a severe amount of anxiety which leads to dangerous behaviors with herself and others. Having any food in her environment impacts her safety and her ability to be educated, as she can’t focus on anything else besides the food. Even at home food must be securely stored; Sequoia simply cannot be around food unless at mealtime. Because of this I advocated to her teachers, principal, and district administrators to remove food from her learning environment (i.e., classrooms). Unfortunately, not enough was done to accommodate her disability. As a result of constant exposure to food in her learning environment, as she grew older, Sequoia’s mental health started declining at a drastic rate, which led to hallucinations and suicidal ideation.
​
A few years ago, I discovered a school in Massachusetts known as Latham Centers that specializes in Prader-Willi Syndrome and provides total food security. This is a private school that is funded mainly by the school districts of their students from all over the country. At Latham Centers, Sequoia would not be constantly exposed to food in the classrooms, hallways, offices, etc., and suffer from the severe anxiety related to those experiences. I asked Lincoln County School District (LCSD) if they would fund this school since they are unable to keep her classrooms free of food and provide her free appropriate public education (FAPE). They ignored my request multiple times.
​
I then practiced my right to file a due process complaint with the state to present evidence and ask a judge to order LCSD to fund Latham Centers. The judge agreed with my evidence that LCSD could not provide Sequoia Free Appropriate Public Education and ordered them to pay Sequoia’s tuition to Latham Centers. Not even bothering to appeal the court order, LCSD did not comply and refused to fund the school. It took a mandate from the Ninth Circuit Court of Appeals to get the district to finally fund Latham Centers. (A year after the original order was written.)
​
Sequoia has now been at Latham Centers for four months and is thriving! She has never felt so comfortable with herself and is able to articulate what she is learning for the first time. She loves her food secured environment, being surrounded by peers who have PWS, and staff and teachers who understand PWS.
​
Unfortunately, LCSD has recently filed a lawsuit against Sequoia. Their intentions are to withdraw her from Latham Centers and place her in a “public separate school” in our community. In other words, they want to remove her from the school that was proven in court to be the most appropriate environment for her safety and education. I CANNOT LET THEM DO THIS. Once again, we have had to retain legal counsel to fight LCSD and protect Sequoia.
​
We believe LCSD is trying to financially and emotionally break us and force us to settle with Sequoia attending an isolated, food-secured school. Taking Sequoia from an environment where she feels safe and understood at Latham Centers to an isolated classroom without PWS trained educators or PWS peers will break her. Just in the past two years she has had to be admitted twice to a mental health behavioral hospital for suicide ideation, likely brought on by her stress attending a school that did not recognize and is unable accommodate her disability . I cannot imagine what tearing her away from Latham Centers and forcing her to go back to school in Lincoln County could do to her emotionally, especially now that she has experienced acceptance, camaraderie, and most importantly, what feeling “normal” is like. Sequoia is happy, safe and stable at Latham Centers and I will continue my fight to keep her there.
My letter to LCSD that started it all.
Dear Team,
I think we can all agree that the situation with Sequoia has escalated to the extreme. Her insatiable hunger due to her genetic condition makes life in the normal world nearly impossible. She is obviously struggling beyond what anyone of us can truly comprehend. When she was diagnosed at 3 months old, I was told what her limitations in life would be. I could not believe they could tell me her future. She was just a baby, MY baby. I was raised to believe with the right mind set and dedication anything was possible. I was respectful of the science of a missing chromosome and what could be, but did not let it limit my daughter. I have spent 13 years researching Prader Willi Syndrome. I have been to 3 national conferences across the United States. I reach out to not only her 7 doctors too often, but to expert professionals in PWS with PhDs to attempt to make her life manageable. She has been through day treatment at Olalla Center and developed many skills that she still uses to this day. And yet even with all this effort, dedication, and love she is still in crisis.
Her world will never be liveable without food security.
I love Sequoia, more than I ever knew anyone could love another person. So if it means changing the world (currently school) to have food security, I am making it my mission in life. I have researched this subject and discovered there is an easier way…….. To create an environment that is built for someone with Prader Willi Syndrome. I have attempted this at home full force and still receive a B- with all efforts put forth and her being an only child. In my research I found a school that caters to kids with complex special needs specializing in Prader Willi Syndrome at Latham Centers located in Cape Cod, Massachusetts. This facility is residential, has a 7:1 teacher to student ratio, and provides FULL FOOD SECURITY. It has 41 students with the majority diagnosed with PWS. Her I.E.P. could be custom to her abilities and goals, not around her displays of anxiety.
This is extreme, I know! I have been on a roller coaster of ideas of how to give Sequoia this gift of a real life. I was willing to pack up and move, but that does not make her eligible. THE ONLY way is for her current school district to provide this level of care. I am willing to do anything to provide her the best life possible despite her chronic condition, but It doesn’t matter. Her future lies in the hands of Lincoln County School District. I hate this. It is a road-block, a wall, something I can do nothing but advocate for and hope for the best. I do not want to battle, but I will, just like I hope all of you would do for your kids or someone you love as much as I love Sequoia.
The ultimate goal is to provide all students with the least restrictive environment possible. This is not possible due to the lack of food security at Newport Middle School AND/OR Newport High School. Due to her anxiety (characteristic of her disability) she did not participate in ‘Career day’ because I was told it is a mondaine activity and her anxiety is too much of a threat to herself and others. Career day is considered a highly desired activity to her. When she was told she could not attend she broke down in tears. Her entire life is limited, and now HER school does not allow her to participate in activities that all her peers do . She sees the posters, she feels anxious and excluded. She does not feel safe or supported in a school environment with candy grahams, jolly ranchers, rewarding with food, gingerbread houses, school store with food, and ice cream parties. She is constantly stressed over being the least bit rude, her threatening to kill peers is a display of her anxiety disorder and a cry for help, so please, lets help her!
I am thrilled the school district is willing to pay and participate in professional PWS training, but is the district able to change? Are you able to change candy grahams to flower grahams? Are you able to change school dances to not provide an unlimited amount of candy and food to students who only cannot always afford it financially or in regards to their health? Are you able to eliminate every Italian soda, leadership party involving food, and support a fully food secure environment?
Sequoia and our family have such a huge level of support from our community, SHE IS LOVED! She has participated in every dance organization, theater, equine therapy, sports, Special Olympics, 4H, and every after school activity. I have exhausted every source. She eliminates herself not only because of her anxiety, but no one ever understanding who she is and does not want to ”freak out”.
I will not accept this for her. I ask you to consider her to be educated, fit in, and live in a place where she is not discluded from a world she strives to be in. This is a huge decision to say the least. I have spent 60 days considering residential care for her. At first I couldn’t imagine not being a part of her everyday life. I would miss squeezing her guts out because she is so cute, laughing and dancing with her, seeing her bury her little face into her hands when she is excited about something, her love, and so much more that I cannot even focus on because it is not about me, it is about her. I miss my daughter already because she is not the same kid. She has moments that she appears happy but they are short lived and surfaced because inside she is dying. I am willing to do whatever it takes to bring back the joy that once was in her heart, the real joy that is not forced.
The thought of her living without the anxiety of food in her school takes all my selfish needs of having her here away. I spoke to her psychiatrist and multiple PWS experts that predict her behaviors will increase as she gets older and lack of food security will intensify even more. This is no way for her to live.
I will continue to work with NMS staff while this option is being explored to create an IEP, behavior plan, and safety plans that support her needs and keep everyone safe all while she is being educated in the least restrictive environment. I do want the team to know there are other options that would open her world without changing your school to accommodate her disability. She is one student, and her disability may be inconvenient to all, but she has a right to an education with food and psychological security. Latham Center would accommodate to her needs and free L.C.S.D. from providing food security at all times, no emails from me, and less I.E.P. meetings. (we have had 4 in 3 months)
Thank you for your time and anticipated consideration and cooperation.
Sincerely,
Kelly Gutierrez
​