Dear Higley District and State of Arizona

Dear Higley District and State of Arizona:

My daughter bears an Autism diagnosis. For 2 years I have been her voice. Time and time again you have ignored not just my voice, but HER VOICE. Besides Autism, she suffers with other diagnoses and interesting circumstances which you have used to discredit what she experiences and have thereby, more than once, violated the Child Find Law because she used to be a foster child and your method is faulty. “This is not a delay, her problems are caused by something else.” As if the something else you SPECULATE from her first environment negates that she still has Autism (a diagnosis given by a doctor after a lengthy process of ruling out everything we were seeing. She didn’t ask for this. I didn’t ask for this.)

Let’s get to your failed promises from January of 2017:

1. “There’s nothing we can do for her even with an Autism diagnosis at the preschool level, but we can make an IEP for her and she can ‘hit the ground running in Kindergarten’.” 
2. We can put her on a ‘watch list’ for the emotionally disabled.
3. You can pay for the preschool program if there are openings, ‘it’s too bad we can’t fit her in now tho so that we could be collecting data all of this time before Kindergarten’.

It appears we have hit the ground at the realities we see, and she’s not running. We are in the second quarter of her Kindergarten year and we have left yet another meeting without an IEP. You explained the reasoning to us that “medical autism is different than school autism”. The ‘watch list’ doesn’t actually exist (neither of my children who were screened by you had any info from you provided to their home school prior to Kinder enrollment). My daughter’s needs were too high for the regular preschool program even tho your tests said her needs were too low for the SPED program. Because she is a high needs child I was also told there was not enough room in the class the public could pay for, and that it was too late to register. We had to go to a different community daycare/preschool where they were not well enough equipped to handle the needs of a child like mine and she was kicked out of preschool—the child you told me was ‘normal’ could not function in a normal preschool. 

Conclusions from interacting with your Special Education teams: 

1. You have framed your teachers’ positions so that their job is not to help but to reject children who have needs while also putting off parents who advocate for as long as you possibly can.
2. You will not help us and at every turn you tell us we’re alone (with a smile no less).
3. Your system rejects kids in need as a money game, but then you pay for it dramatically later when their needs are more severe because you contributed to their problems when they were young by not helping them. Surely in the field of childhood development you would understand that time is of the essence, and yet you act like all we’ve got is time.

Fortunately for us we found someone who WOULD help us. It was SUPPOSED to be you. We were sent to YOU by our pediatrician, developmental pediatrician, psychologist, occupational therapist, and attachment therapist. Five medical and mental health professionals who have worked directly with my daughter said she needed to come to you and that you could/would help her, but you refused her time and time again. We did find someone who would help us. You won’t be happy to hear who it was. His name is Eddie Farnsworth. 

Eddie Farnsworth (yes, the same man who has been painted to be a villain to AZ public education itself). When our public education system wouldn’t listen, THAT man HEARD parents who have kids with special needs like mine. He participated in writing and passing Jacob’s Law. Jacob’s Law was essential to helping me get medical and behavioral health therapies for my children in need during the most critical time they needed it.

You have been routinely rejecting my daughter because your system and extremely difficult process for qualification dubbed her as a “normal” child who doesn’t need any help. My daughter has not only received an ‘alphabet soup’ of medical diagnoses to prove that she is deserving of assistance in educational setting, but also through that route she has been qualified for and attended the following:

1. Occupational Therapy
2. Attachment Therapy
3. Behavior Coaching
4. Anger Management 
5. Psychologist and Counseling appointments
6. Social skill assistance

Apparently children with these types of needs at a very young age and rigorous therapy schedules are “normal” cases to you.  At times our family has averaged 9-12 therapies IN ONE WEEK. Apparently that’s so normal that in order for you to believe us you have now put more responsibility on our plate to get an “outside evaluation” to prove her needs are high enough. Sure thing—we’ll just cram that extra, time consuming, expensive, and lengthy process into our schedule while we’re still working to survive daily life since obviously our daily life is as normal to you as people who raise neurotypical children. 

What could raising neurotypical children be like? Wait—as I think about it—I DO have experience with neurotypical children—a lot, too! Besides being a teacher and seeing hundreds of children in my classrooms, I have also raised neurotypical and gifted children. There was a day when our family only had an appointment for medical reasons when something small like an occasional ear infection came up—once every few months or so. Back in those days I had plenty of time to schedule outside evaluations if they had been needed.

To you our kids are just “other people’s children”, and by the time there is equitable change in our state’s education system for children who have special needs like mine, MY child’s needs have been and will continue to be missed by you.

Don’t worry about my child. She’s a fighter (her two in-school suspensions from last week are evidence of that—oh wait—never mind, I guess you believe that behavior is normal for Kindergartners). Being alone and left without any additional SPED help from our public education system is something we’re getting used to. We can and WILL move this mountain without you (thanks to Eddie Farnsworth, Anika Robinson, Susan Woodruff, and Angela Teachout, we have more tools to do it) but it would have been nice if in the process the one place that no less than 5 other doctors and therapists sent us to had actually done their job to help my daughter. We believed you would be on her team, but you chose not to. As her parents who have worked harder than we ever thought could be possible to raise this one child, WE will be taking the credit for her progress and also giving HER all the accolades for overcoming mountains larger than a 5 year old should ever have to climb on her own. We will also give credit where it’s due—to the people who were listening to parents like us and who opened the way for outside assistance even tho it’s still been rough.

In the mean time, you need to understand that children JUST LIKE MINE in our district and state are being rejected for services.

You also need to know that there are MANY children with similar situations as mine, but their parents have a different socioeconomic status that prevents them from finding a way to help their children get what they need. Those same families will be directed to you and you will reject them. They may not have the financial ability to stop working to take their child to therapies like I did. They may not have a college degree to eventually pick up a higher paying  job to undo the financial damage from the hardest season of their life. They may not be married and they may not be able to weather the storm of care-giver burn out on their own. Their pediatrician and developmental pediatrician will send them to you for help, they will feel like there is hope for their child and situation, and there you will be using your screening/evaluation system that’s set up to reject their children with special needs and you’ll be turning them away with a smile. 

All of this will continue to happen, unless of course, you understand that the following changes in the way you run your Special Education program are essential to the future of these kids and their families.

1. A developmental disability such as Autism (or the equivalent ASD verbiage for kids under 5) needs to be recognized as qualification for special ed services at the preschool level (Kindergarten is too late).
2. Girls with Autism fall under the radar and are not served best by the same ADOS testing system as boys with Autism. This does not negate that they still have ASD. This does not mean their needs are to be neglected.
3. A mental health diagnosis such as Reactive Attachment Disorder (RAD) can not discredit other diagnoses such as Autism.
4. Mental health diagnoses such as RAD, PTSD, or unspecified mood disorders must also be recognized as special needs both educationally and developmentally (the earliest interventions for these disorders are essential for their future, and they CAN be treated when done early).
5. Recognize that one-on-one testing systems with an adult evaluating a child are done with completely different scenarios than the social settings a school classroom provides. We cannot reject children with special needs diagnoses because they can perform cognitively well in a low stress setting. Recognize that stress (such as social situations) can trigger meltdowns and rages where their IQs drop. These drops in IQ affect themselves and others and is something that needs to be worked on on the spot, regardless of their ability to stack cubes in a silent room with one on one adult attention.
6. A child who has trauma has a situation that affects their childhood development. They have a situation in which they manifest delays. These delays can be reversed with early intervention, but leaving them on their own because you don’t believe the situation counts as a true delay is ignorant on the part of the educators, and also violates the Child Find Law because it is impractical to view their situation as undeserving of additional special educational resources and assistance. Whether genetic or caused by environmental factors, ANY delay with adverse effect to childhood development IS an educational special need.
7. Foster parents who have a child less than 6 months cannot be rejected from testing because their child has not been with them for very long.
8. If a home district rejects a child with special needs, open enrollment and school choice options for other public preschool programs must also apply to the special education program. (We would have gone to the Gilbert Special Ed preschool program upon finding out the lacking nature of the Higley’s program, but once again state law continued to mandate our children with special needs had to face their struggles alone).
9. All teachers (and special education teachers especially) need trauma training and certification to appropriately recognize and work through the behaviors that come with these types of children. Foster parents have a deeper understanding of and more training hours on the adverse childhood effects of trauma than educators do (I know, because I have become both a certified educator and a certified foster parent. To my dismay ONLY ONE person on the special education team that rejected my daughters even remotely understood and was concerned for the adverse developmental implications of my daughter’s Reactive Attachment Disorder diagnosis). Just as the Structural English Immersion endorsement was required of teachers, trauma certification needs to be added into University classes and teacher certification requirements.

It has been brought up to me by a school psychologist that certain types of mental health diagnoses such as schizophrenia can look like autism at a young age. Because my daughter has a RAD diagnosis and we live with it, I am WELL AWARE of the dark odds that are playing against her future—that realization has been crushing to me and my husband. Let’s remember that schizophrenia and other such diagnoses are not given until a child is in their late teens or early twenties. For MY daughter, that kind of an evaluation is FIFTEEN years from now. Shall we wait for a decade and a half to decide if we will meet the needs of this child, or will we actually do something to deal with the diagnoses she CURRENTLY bears? Will we discount what she experiences because we do not know what other mental health issues she may deal with in the future thanks to RAD? Are we going to be the ones to nail the coffin in her future when it’s not our place to play the doctor? It IS possible to have Autism AND Reactive Attachment Disorder. My child has both, and I see it every day. Her highest chance of beating the odds against the challenges of both issues comes with early and intensive focus to therapeutically help her, and part of that therapy must be appropriately helping her in her educational setting. Will you or won’t you decide to be on her team?

We look forward to watching the Higley District and the State of Arizona make the necessary changes in our education system to serve not just my child, but to effectively, appropriately, and adequately serve the state’s most vulnerable population of children with special needs.

Sincerely,

Debra Jo and Mitchell Borden