Just a Mother Sharing How Autism & Mental Illness has Imapcted our Family

Evolution of a Diagnosis



“I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I’ve bought a big bat. I’m all ready you see. Now my troubles are going to have troubles with me!” 
Dr. Seuss

When I was a child I often saw the world, people, and places through rose colored glasses. Even though my childhood was a turbulent contradiction of my optimistic conception of how life and people actually operate in reality. It was those rose colored glasses that propelled me through life and gave me hope in my darkest hours.  They are the same fictitious glasses that help me rise each morning with the optimism that today is going to be  better day than it was yesterday. They are the same glasses that give me hope, (irrational as that may be considering the current circumstances), they give me hope that one day my child will have a life, a mind, that isn’t so undisciplined and tormented by thoughts he no longer controls.  They are the same glasses that prevent me from drowning in negativity and holding onto unjustified anger towards a child who has little control over his actions.  It is that childhood ideal that every individual has a story and reason as to way they behave the way they do that has kept me grounded. As a parent of a child with a severe mental illness, it is those rose colored glasses that hold together the very seams of my own sanity at times.  Without those glasses, that optimism, I don’t know if I could have ever made it this far.

When my family moved to San Jose, Ca. we all felt that perhaps this would be a chance for a fresh beginning.  Our lives in San Diego had been so tumultuous with Jordan’s behavior having escalated to a fever pitch on a daily basis while we lived there. Now though, Jordan was on a new medication that was helping to control his episodes, my husband had a new job, Jordan was starting in a great new program at a new school, and we had a new home that wasn’t drenched in negative energy.  We felt extremely hopeful about the changes in our situation and things went well for a short time.

My experience with Jordan’s prior school district in San Diego had taught me valuable lessons and inspired me to grow more of a backbone. Because of this, I was able to secure him a space in a classroom exclusively for  children with special needs.  There were two licensed therapists in the classroom and the teacher had a PH.D.  I felt Jordan was in qualified hands and perhaps I could finally start working again.  The staff in my son’s classroom was amazed at how well behaved my son was.  Truth be told, I was a little amazed myself.  In fact, Jordan was so well behaved that the staff started questioning whether or not he even needed to be in a special needs class or have an IEP.  The thing of it is that Jordan when presented with a new environment feels unsafe,  He works exceedingly hard to hide his challenges in fear that if he were to act out that some form of harm would come to him. When he comes back to an environment in which he feels safe he will unleash onto those he feels safest with.  Eventually Jordan felt secure in his surroundings  at school and the the staff never questioned me again.

Although Jordan was on a medication that helped control his moods and anxiety, we noticed that it was causing some very undesirable side effects.  He was on Risperdal and it was causing Jordan to have severe head and stomach aches. It also caused him to begin growing breasts, yes breasts, that really can happen. His new psychiatrist switched him to Abilify letting us know it was a safer medication and had fewer side effects.  The medication seemed to work and Jordan lost weight, lost the breasts, and stopped feeling sick all the time.  We noticed though that Jordan’s behavior was becoming increasingly violent and hostile.  We also noticed that he seemed to have an increasingly unrealistic thought pattern and some obsessive compulsive tendencies.  The classroom staff also began observing increasingly disturbing behavior, such as stalking and what they thought to be delusional behavior.  There was not a day that went by for almost two years that I was not called to the school.  Jordan went from being able to attend a full day to barely being able to attend half days.  I felt scared, lost, confused. I kept looking to the professionals for answers but no one seemed to have any.

School behavior was deteriorating rapidly and home life at the time was almost unbearable.  Jordan was having meltdowns almost every day.  I was having to take him to the emergency room at least twice a month when we couldn’t help him to calm down at home.  I was having to call the police to our home because he was threatening me with knives and threatening to kill himself.  One moment Jordan would be this loving, sweet, playful little boy and somehow he would get triggered by something so minuscule and it was like a switch in his brain just flipped. He became violent, incoherent, illogical, and brazen in his behavior.  At the time I had a huge professional support team. We had his therapist at school. an outside therapist, psychiatrist, a crisis team, and eventually a psychiatrist at Stanford. You’d think that with that much support someone would know what was happening with this little boy, but no one did.  They just kept attributing all his behaviors to Aspergers and anxiety and hoped that as he grew older he would grow out of most of the behaviors.

Eventually circumstances became so out of control and I felt I was losing my son.  I was afraid that he would hurt himself or someone else if we didn’t manage to get things under control and soon.  When Jordan turned ten we took him to Children’s Health Council in Palo Alto, Ca.  We paid an obscene amount of money to have him evaluated and this is when we were given the diagnoses of childhood onset schizophrenia.  After the initial shock wore off I hoped they could guide us in the right direction to get help.  Other than telling me that this wasn’t my fault and that it was a very rare condition they provided absolutely no guidance at all.

A few days after the diagnosis I met with Jordan’s doctor at Stanford.  She read the report by the Health Council but didn’t agree with their results.  She told me that a child with Autism can present the same types of symptoms and that just because Jordan has a vivid imagination it does not mean he should be labeled as schizophrenic.  I cannot begin to express the overwhelming joy and sense of relief I felt.  No parent wants  to hang the stigma of a severe mental illness over their child.  I felt that since his psychiatrist worked at Stanford she must know what she’s talking about.  Stanford is one of the most prestigious facilities in the country and only the best and the brightest are accepted there and if his doctor says it’s not schizophrenia, then hey, obviously the Children’s Council misdiagnosed him.  At least that is what I wanted to believe ever so desperately.  It’s what I needed to believe at the time because I couldn’t accept a diagnosis of schizophrenia.

Unfortunately, it was not a belief I could hold tight to for very long.  After three more years of revolving diagnoses my son was once again diagnosed with onset schizophrenia at the University of Colorado by a well respected psychiatrist whose specializes in childhood bipolar & schizophrenia.  I could no longer deny what was happening to my son.  I had to come to terms with his illness so that I could help him move forward and get him the best help possible.  We are now in the process of having my son meet with doctors at the National Institute of Health in Bethesda, Maryland.  We hope that after meeting with the highly esteemed doctors at their facility that we will have a better idea of how to proceed going forward with this diagnosis.

“You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it.” 
Maya Angelou

Author: angeliamarie44

This blog was created to share our experiences and the impact of mental illness and Autism. I believe in the importance of erasing the stigma of mental illness and for that to happen, families such as mine need to speak out, advocate, and provide the real story of what we endure daily. That includes, the struggles and the successes of our daily life and interactions with the health care system, schools, police, and society in general. Mental illness, just like cancer, diabetes, or even the flu is a medical illness and it's past time that we treat it as such. I feel our societies failure to provide treatment and support services for mentally ill individuals and denying hospital care to the mentally ill is setting a separate and unequal standard in our country that the mentally ill are somehow less deserving of medical care and being treated with the same dignity and quality care that any other person facing a medical crisis has the right too. They too have a right to a successful life free from pain and without proper care and understanding their illness could have life threatening consequences. As a mother with a child who has struggled for years with mental illness and Autism, I feel it is my path in life to raise awareness so that we might create the much needed change in this country and end the discrimination facing the millions of mentally ill. "Mental illness is an equal-opportunity illness. Every one of us is impacted by mental illness. One in five adults are dealing with this illness, and many are not seeking help because the stigma prevents that." ~Margaret Larson

4 thoughts on “Evolution of a Diagnosis

  1. Oh how incredibly difficult this must be for you… getting a diagnosis can be so difficult – and then finding a treatment that works is just as challenging! Wishing all the best for you and Jordan. May you both find what you need, and soon, to have a peaceful life!

    • Thank you. It has been a long and difficult road but knowing the direction to head in now makes such a difference. My son is doing well for now and on medications that seem to keep him stable and meltdown free for the moment. We just have to hold onto the small blessings.

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