Serious Emotional Disturbance Takes A Toll on Everyone in the Family

Hello, my name is L M, married 21 years, raising 3 boys, 17, 13, 10. I’m here to share about my 13 year old son. He is diagnosed with Attention Deficit Hyperactivity Disorder; Oppositional Defiance Disorder; Reactive Attachment Disorder; pediatric Bi-Polar.

Our days consist of defiance toward nearly every suggestion, reminder, or demand that we make of him – even as simple as washing hands with soap, brushing teeth – resulting in gingivitis, or ensuring he has clean clothing to wear. We deal with daily anger and aggression; anger often morphs into destructive and aggressive raging. Nearly everything has been removed from his bedroom as anything he has becomes a projectile.

His walls and door are damaged and destroyed. We are on constant guard for assaultive behavior. It happens often. We have called 911 for safety assistance 9 times in recent months, handled countless situations on our own, and called his therapist or on-call services numerous times in an attempt to keep everyone safe.

He is now on probation with Juvenile Justice due to his behaviors. The relentlessness and extreme level of these behaviors allowed us to qualify for the SED Waiver [Serious Emotional Disturbance], starting back in 2016, administered through CMH.

These are additional/enhanced services provided by Medicaid to support families in keeping our children in the home. “Promises” of support provided by the SED Waiver include:

1. Respite – (11 days/mo)the one time we used respite needed to p/u early d/t aggressive behavior.

2. Crisis respite – (3 days/mo) we couldn’t use as they didn’t feel he was aggressive enough.

3. Currently respite is 3 hours once a week; it also involves two hours of transportation time.

4. SED Therapy options – Art, Music, Sports. We were offered Equine therapy and CMH authorized one block of 8 sessions. My son made significant connections, then we were told it is not covered under the SED waiver so additional sessions were denied.

5. Off the record, I’m told not to re-apply again. YOU have had the Waiver ‘too long’–Not that behaviors had improved.

I was exhausted emotionally, and physically… didn’t have the energy to fight. We moved to the BehavioralHealthHome program where everyone
could get services.

So far it is a complete failure. SED Waiver defines the youth as a “Family of One” I have TWO ‘other’ children. With the things they witness, and overhear daily, things our family cannot do they DESERVE support also.

Services he received through CMH: B. Therapy, Wraparound, CommunityLivingSupports met at our home, saving us significant drive time.

Therapies attempted include CBT Cognitive Behavioral Therapy, DBT Dialectical Behavioral Therapy, Trauma Focused-CBT, EMDR -Eye movement Desensitization and Reprocessing — unfortunately nothing helped. Music therapy made no positive impact on behaviors, despite over a year in the program.

II. Crisis Help
A. First attempt to get help outside of home

1. Medical Hospital – we did not know where else to go.

2. Dr on staff with hospital did not agree with the private psychiatrist’s diagnosis of ‘Pediatric Bi-Polar’ so took him off meds and sent home unstable. When questioned this
decision based on concern for the SAFETY of my other two children, I was threatened with CPS and child abandonment charges.

3. I was also informed that if a sibling was injured, CPS would be called d/t not protecting my other boys. They moved to grandparents for a MONTH while we worked
to stabilize K.M. B. Recent hospitalization.

4. After 3 continuous days of raging, culminating in violent/graphic descriptions of his plan to kill his youngest brother, attempt suicide, and kill my husband and me, we called for outside help (Sheriff). K.M. threw a large rock at my husband; left a 5’ x 3’ hole in his bedroom wall.

5. He was admitted to Pine Rest, stayed 12 days. Less than 3 hours of getting home he was into another rage. The following day we requested another emergency med review. A week later we received notice that the final three days of his stay were denied by CMH due to lack of medical necessity. I was returning home from the hospital after being in the ICU with stroke-like symptoms and receiving TPa.

I am not blaming my son for my health issues, rather level of challenges and stress in my home. The stress we have endured for last 12 years has taken its toll. My circle of support includes: My parents, in mid & late 70’s as well as other families raising children with similar challenges.

We are all at a dangerous level of frustration and exhaustion.

Conclusion: Raising a child with severe challenges is beyond difficult in itself. Having little support, ineffective services or no services, and learning to navigating systems
adds exponentially to the burden. Legally our children and families are entitled to care and support based on need. Unfortunately, we are denied and lied to at nearly every effort to gain those supports.

Our goal is supposed to be to keep K.M. in our home and in our community. When appropriate services are withheld we do our best even as we are in constant mindfulness of the lack of safety in our home. The constant stress of the situation leaves us physically, mentally and emotionally exhausted. I don’t know how much longer I can continue to push forward, even as I stand by watching my son destroy my home in both physical and emotional ways every day.

My son is now in the juvenile justice system. My son is NOT a criminal. He is a youth with severe mental health challenges. The current system leaves me no option for help other than to pursue police involvement, which results with my son having a criminal record. We are told it is the only way to get him help.

If you are in a position to help us. Please hear my story and step up to help.