Issue 54: Ways to Survive ASD Parenting and Stay Thankful
Issue 58: Winning Ways to Share the Love with All of Your Children
Issue 81: When Special Education Fails to Be Special
So now that I am over the initial shock and sadness, I suppose I am ready to blog about Jerry's diagnosis. After six months of observation by his two ABA's, his neurologist, and then a psychiatric evaluation, childhood schizophrenia has been confirmed. I can't say that we were completely surprised. We had been seeing the signs for some time and there was just no other explanation. Also, two members of John's close family had/have the diagnosis and heredity does play a factor. If the disease is going to manifest itself, it is typical to be between the ages of 15 and 17. Jerry will be 16 in February. Dr. F said some of the classic autism characteristics we saw in Jerry after his diagnosis at 4 could also have been childhood schizophrenia symptoms that we were simply unaware of because of his autism diagnosis...the paranoia, the thoughts that others were talking about him or out to get him or hurt him, plotting against him.
And apparently, if the disease is already present, just temporarily dormant, it can be brought to the surface quicker by the use of marijuana, even for medical purposes. Jerry took medical marijuana for his seizures and mood from February to May 2017. His schizophrenia symptoms surfaced by the end of May when we immediately took him off of the drug. Trying not to dwell on the should have's, could have's, or would have's. Clearly, at some point, Jerry was going to exhibit the signs of the schizophrenia. It just may have appeared later, early 20's possibly. Remembering and clinging to Romans 8:28 and "all things". As an adult with the onset of the disease, we would have had less influence over his diagnosis and treatment. So there's that!
And with this new diagnosis comes mandatory medications. I say mandatory because until you have experienced your child in the prone position of a parking lot crying and screaming, pale and terrified because someone is shooting at him...watched him argue with an owl on the shower curtain for 20 minutes...cry uncontrollably because a voice was telling him he wanted to hurt his brother Jonathan...seen him pace and argue with people who aren't really there, sometimes sleeping no more than 6 hours out of 48...and walked in to check on him in the middle of the night only to see him sitting straight up in bed and wide-eyed with his favorite superhero poster shredded all over his bed because "he wouldn't stop staring at me and bothering me", well let's just say you just haven't walked a day in our shoes. The medications are mandatory, for his peace and well-being, as well as ours.
He is currently on two antipsychotics that are being tweaked to find the right dosage to make his delusional periods (10-12 days per month) more manageable and even less intense. Haldol is an old-school antipsychotic that helps with the delusions and hallucinations. It is also a medication John's one family member had success with and so the doctor felt would be more likely to help Jeremiah as well. Rexulti is newer and helps with the more positive symptoms of depression, not caring for his personal needs (yes, we are wiping him again), and the mood swings.
So far, the results have been positive. These phases show a less catatonic and terrified/paranoid Jerry. He can tell us now what the voices are saying and why he is crying or what is so funny that he is giggling uncontrollably about. Usually, in those instances, the voices have said something he finds funny. Those are less concerning to us than the voices that are mean and threatening to him. I'm not sure it's a great thing to always know what the voices are saying to him now. Sometimes, they are just downright creepy, but I think it makes Jerry feel better to tell us so we can comfort him.
The visual hallucinations have lessened as well. He no longer seems to see people/entities that only he can see. That's good. Another hair-raising experience is to witness him walk up to a corner of the room, look up, and say, "Oh, there you are!"
Anyway, there are the basics and what we know. You all know that I am a researcher by nature. I research or Google everything to find as much information as I can on a topic and possible solutions to the problems it presents us. This has been a challenge with childhood schizophrenia. There is very little out there. There is a shameful, dirty stigma to the disease that no one wants to talk about it, especially if they or someone they love suffers from it. And that's why I plan to blog about it, as I have other challenges we have gone through with Jerry. People, parents in particular, need to know they are not alone. Someone else is going through similar circumstances, feeling the same grief, facing the same fears of uncertainty. I did find a great Facebook page for Parents of Kids with Schizophrenia and that has proven to be a pretty supportive and sometimes encouraging resource. However, it has at times been downright discouraging as well with stories of incarceration, suicide attempts, and long-term residential care. I try to filter those posts through the truth found in Philippians 4:8, which says, finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things.
As always, keep us in your prayers as we navigate these uncharted waters. Above are two fairly informational videos about childhood schizophrenia if you would like more information.
I am a Christian. I am a wife. I am a mom. I am an author. In that order.