Break the Stigma: A Mother’s Story (Part 3)
In this final segment of Break the Stigma, Kathy continues to advocate for Max’s in-school evaluation while preparing him for high school. While helping Max, Kathy’s daughter battles with anxiety and depression after being diagnosed with a chronic illness.
At the suggestion of Mayo Clinic and Max’s therapist, I turned a written request into the school for Max to be evaluated for a 504 plan, which would accommodate Max’s learning needs within the general school curriculum. When I attended the meeting to discuss the evaluation, I was told that the school would not evaluate Max because he had to be at school five full days in a row so they could witness his anxiety. I had documentation from the Mayo Clinic, his primary care doctor, and his therapist to support the need for the 504. I cried that last 10 minutes of the meeting and was unable to speak because of the things that were said about my son and me.
Soon after this meeting, the school turned me into the school district’s truancy court. I had to attend a meeting at the courthouse to hear about why truancy is serious and what could happen to me if I don’t make sure my son is at school. I had to sign up for truancy mediation at the school, if I didn’t my case would go into the court system. Again, all this occurred during a time in which my son had a medically-diagnosed condition and I was requesting that the school address his medical needs. All of these experiences crushed Max and me. I ended up filing a request for mediation with the State Department of Education, then hired an attorney in order to force the school to evaluate Max for an alternative education plan. He was finally evaluated in September of his 8th grade year – seven months after my written request.
All this time we continued Cognitive Behavioral Therapy. Max worked harder than I can imagine any 12-13 year old could. It was really hard work for both of us. There is no magic pill or potion that “fixes” this. There is no easy answer.
After his evaluation, Max qualified for education services tailored to his individual needs under an Individualized Education Plan (or “IEP”). He was assigned an amazing teacher who understood his anxiety. He was allowed to take breaks when needed, have help breaking down large projects when needed, and check in with his teacher before- and after-school. He was at school nearly every day. It was still hard work, but it was amazing. We continued very regular therapy (still with no insurance coverage) to get through 8th grade and prepare for high school.
Our lives will never be the same. Along with the challenges we faced, I had to sell our townhome and get a second job because of medical debt. During this challenging time with Max, my daughter, Jane, was diagnosed with severe Crohn’s Disease 3 ½ years ago. She also suffers with depression and anxiety after her diagnosis with a chronic illness. The combination of out-of-network, uncovered services (therap and high out-of-pocket maximums, and my determination to pursue all avenues for care and treatment for my children, exhausted our resources.
Currently, Max is about to finish his freshman year of high school. He was just transitioned from an IEP to a 504 – what I requested in the first place. There continue to be bumps in the road. Sometimes when things are not going well, we are both really scared. Our journey continues, one day at a time. I am so proud of Max. This was an incredibly dark time for him, and it hurt so much to watch him go through this. There are so many unknowns, but this I know: Max will be a successful, self-sustaining, contributing adult.
As we worked to figure out Max’s condition, many people spent more time punishing him than trying to help him. As a parent, this is heartbreaking and exhausting. You evaluate and judge yourself constantly, and you soon realize so does everyone else. Not only do we continue to work on coping and managing the day-to-day anxiety, we are still recovering from the traumatic experiences we had to deal with because this was a mental illness. Stigma is real and it needs to change.
For this blog post, I asked my children two things: First, “Could I share this story?” Second, “What would you want me to share?”
They said, “We are people just like everyone else,” “People don’t want to seek counseling or help because of stigma, but do it: it works,” “Keep looking for the right counselor,” and “Break the stigma.”
So, we have become life-long advocates for children’s mental health. There is so much we can do to improve things. As this is Mental Health Awareness Month, please share this story with others and help to raise awareness and fight against stigma.
Click here to learn more about mental health services available to parents. Have a story to share about your child’s mental health? Visit Speak Now for Kids on Facebook or tweet using #HeroesofHope