Systems Of Care: Hope for Parents Struggling within the Systems of Care

Every parent of a child with special needs struggles at times. Some struggle daily, hourly or, at times, minute-to-minute. We are twins who co-adopted two sons, both of whom are persons of color and have special needs. Our oldest is Gabriel, who is autistic and experiences intellectual/developmental disabilities (I/DD), a myriad of medical issues, as well as mental health (MH) and behavioral health (BH) challenges. Our hope is to share some sage advice from the struggles our family has overcome.

Suggestion #1: The nationwide Systems of Care (SOC) (educational, medical, MH/BH and community supports) appear to be broken! This is not our fault; and yet, it becomes our problem. Knowing it might be broken helps us prepare for the battle, fighting for our child’s rights!

Experience tells us Systems of Care see our kids as a diagnosis or as belonging in a specific silo within the system. But Gabriel is not a number or a statistic. He is a person who has needs across the spectrum, making him a “complex” child.

Our education into this system began when Gabriel was attending preschool at age three. He would hide under tables or desks instead of sitting in a chair because the classroom was too loud. He would run out of the room or building when frustrated. He was viewed as a behavior-problem, and as a defiant child because he refused to do everything most adults told him to do, NOT as a child whose actions were really his attempt to communicate his discomfort or emotions. We did not know these behaviors were typical for autistic children. After many tests and evaluations, Gabriel was wrongly diagnosed at age three with a ‘likely conduct disorder,’ despite no ‘bad behaviors’ at home. The schools and medical experts refused to consider autism as a factor.

In 1st grade, ages five to six, we learned more as special education professionals denied implicit bias was at play, yet reported Gabriel’s autistic behaviors as “insubordination and willful defiance.” These led to over 120 restraints and seclusions over six months, with elopements from his classroom and school grounds.

Suggestion #2: No matter who in the SOC tells you they are looking out for your child’s best interests or have your child’s best interests at heart… DO NOT SIMPLY BELIEVE IT…LISTEN TO YOUR HEART!

People may believe they are trying to help – and you may even want to rely on them as they are “experts and professionals.” But, you are the only one who really knows your child and what is best for him/her. If your gut tells you something doesn’t sound/feel right, or you doubt their input, GO WITH YOUR GUT! LISTEN to your inner voice!

For Gabriel, we determined we had to engage a Special Education Attorney to represent his interests. While he had better accommodations on his Individual Education Plan and additional evaluations by the school – staff continued to see him as an “angry, black boy” who was a behavior problem. They never acknowledged his behaviors as a form of communication. We later learned these ‘significantly distressed, unsafe behaviors’ (which they called “violent and aggressive”) were communicating that he felt unsafe because he was being physically abused by staff.

We were first-time parents who “didn’t know what we didn’t know.” We assumed if he was being hurt at school, he would tell us, since he is verbal. We didn’t understand that his behaviors were his ‘voice.’

Suggestion #3: ALL behavior is a form of communication. Every form of behavior is telling you something. Angry or unsafe behaviors mean something is wrong. School staff are adults, and it is their responsibility to figure out what is upsetting your child while at school, and/or what your child is trying to tell us.

Behaviorist approaches (e.g., give a sticker to a child to motivate good behavior) may work for neurotypical youth, but not for many children with special needs. Educators need to determine WHY a behavior is happening, so steps to address our child’s needs can be taken.

At age seven and a half, we started to make progress. His attorney was able to obtain testing from an outside-source – who confirmed what we knew to be true – Gabriel is autistic. At this point, Gabriel started saying things like, “I wish I could go to the moon so I won’t have to go to school.” He was also depressed and would cry before and after school. It took time, but we finally found a pediatric psychiatrist who was also a parent with lived experience. This doctor made referrals and ordered tests, ultimately confirming the autism diagnosis. Through MH therapy, Gabriel was able to tell us about the abuse he experienced from teachers/staff. We found a new school with an experienced special ed teacher who worked with his MH therapist to help Gabriel learn skills to express his feelings through safer behaviors.

Suggestion #4: Do not back down, shy away, or apologize for standing your ground and being your child’s advocate. That is your job, your privilege, and your right! Your child will not be able to succeed without you!

If we had not continued to fight – to get the testing, the attorney, the supports and the services all to ensure we found the ‘right fit’ for Gabriel, he would not have been able to make progress. To our relief, he did, and it was wonderful to witness!

It was 7th grade and COVID hit. Gabriel struggled with “school-from-home.” His behaviors escalated through puberty, and were unsafe at home. We started intensive in-home services which focused on Collaborative Problem Solving (CPS) three hours a week – teaching, coaching and supporting us through the escalations and unsafe, distressed behaviors.

In 8th grade, Gabriel experienced overt racism at school. While I do understand that this is NOT a blanket, empirical statement that every child of color will experience overt racism, this happened to Gabriel. Additionally, something we feel compelled to share is that, prior to being parents, we were blind to race, as we lived the unacknowledged social advantage of being white. We believed in diversity, and felt we were “color-blind” as we supported everyone without a thought to race or ethnicity.

Early in the year, a classmate called him the “N-word” multiple times in a row. The teacher refused to stop or punish the offender. Even though Gabriel was the victim of racism, office staff supported the offender, and sent Gabriel home early (in lieu of a suspension) since he was angry and yelled at the offender.

A few months later, a Behavior Specialist sent him home early for watching “obscenely, explicitly violent material.” He tried explaining it was mythology, and content for which he received prior approval. He told us he viewed a graphic novel (i.e., comic book), where Prometheus was chained to a rock and an eagle was sent to eat his liver. We demanded an investigation. The picture he viewed was painted in the 1800s; not gory, nor violent.

In the follow up meeting, Gabriel asked why the two other boys, who were watching graphic slasher-movies, didn’t get into trouble. Upon investigation, Gabriel was found truthful. It is only fair to share that the two other boys were white. While we cannot prove racial bias was part of this decision, it would be untruthful if we did not share this fact. And unlike Gabriel, these two boys were not disciplined or sent home early.

Suggestion #5: LISTEN when your child tells you their perspective on what happens at school. Do not minimalize their concerns. The school may not have had an intent to do harm, but harm may have been done!

School staff tried to say Gabriel misinterpreted the situation. But the effects from the Behavior Specialist were real and harmful.

Sadly, things got worse. His new special ed teacher discriminated against him by barring the doors to the school, refusing him entry. While Gabriel got an insincere apology two days later, on the third day this same teacher barred him entry to the classroom by holding the door shut and locking him out.

This final act, by a special ed teacher, no less, sent Gabriel reeling. He attempted suicide several different ways in the hours that followed. In the end, he required emergency MH care. We transported him to a hospital with a youth psychiatric unit. After a week in the emergency room, which required physical and chemical restraints, the MH team agreed he needed acute psychiatric care.

We faced further discrimination based on his disability; in this case, referred to as ableism (a discrimination in favor of able-bodied people). Gabriel has medical issues that requires wearing pull-ups. These issues, combined with his I/DD, require additional supports with activities of daily living (ADL), including adult assistance when he has diarrhea.
While hospital staff agreed he needed to be admitted to a youth psychiatric care unit, neither program in the area staffed their adolescent units with nurses (to assist with ADLs). With limited beds available, they might have to place someone without a disability instead of Gabriel.

Suggestion #6: Think outside the box! Be creative! Do not allow people to tell you “No!” or “You can’t!” when you know “this” (whatever “this” is) is what your child needs.

In this situation, while Gabriel was 13 years old physically, he was at different developmental ages: cognitively, he was about age 10 or 11; but socially, emotionally, and morally, he ranged from ages three to eight. For that reason, the psychiatric unit finally agreed to admit Gabriel into the children’s ward, which is staffed by nurses. After several weeks, he was discharged. It took six months to find a MH therapist, but he was then admitted into a youth day-treatment program. It has been two years since the life-threatening crisis and Gabriel is doing much better. While his go-to is retreating into his electronic devices and the TV, he has been making great strides toward socializing and engaging in life again!

Suggestion #7: It’s ok to get angry and feel negatively about the SOC. And, It is easy to get stuck, lost or even paralyzed into inaction. FIND YOUR SUPPORTS! Family and friends are good, but what many (if not most) of us need is support from other parents with lived experience – those who “REALLY GET IT”!

For example, on social media, take the advice/support you want, and ignore/disregard the rest.

Reach out.

Get involved. That may mean one hour a month, or every day.

Do not berate or criticize yourself; just do what you can.

We needed this support; there is no shame in it!

Gabriel is a sophomore in high school now. We are encouraging him to stand up for himself and ‘speak out’ whenever he perceives an injustice or feels he has been persecuted. We fight for him, we fight with him, and we support him by modelling socially appropriate ways to express oneself in a way others will hear and listen to him.

Ending on a positive note

Despite the trials and tribulations Gabriel has overcome, he has found joy in Special Olympics. This season, he is powerlifting! His confidence grows every week, and the practices afford him the opportunity to support his peers. It is such an encouraging experience – to be told “do your best” and “you’ve got this” – instead of more neurotypical sports where kids are told “try harder” or “you can do better.”

Gabriel has set a long-term goal of “being a therapist for kids like me – kids of color… or a blacksmith!” Maybe he will – maybe he won’t. It doesn’t matter to us because we love him and support him no matter what.

He has encouraged us to engage in parent advocacy for youth with I/DD and MH and/or BH challenges – to be part of the solution. We make recommendations toward fixing our state’s broken SOC. Despite all of Gabriel’s pain and anguish, his courageous persistence ushers forth the strength we need to support others. Gabriel is our champion! We hope some of this advice will help strengthen those of your who are on the same ‘parenting special needs’ journey.