Sorry, this is long. I’m anticipating some may be bothered by our approach. We could not really get good advice from drs on this subject. Most Drs encouraged privacy due to stigma. Others wanted ROI’s and as much dialog between agencies as possible, but not with the public. We had to find our own way.
Our son was dx at 7/8yo.
As he aged, I wondered what to do?
I may be outspoken, but he’s very private.
I wanted to care for him, protect him, and yet: teach him how to live with this.
I sometimes tell people quietly with him present. For instance: dentist office, vision appointments. They need to know that everything could be fine, or he can say something or give you an answer that is misleading, unless you “get it”. (Vision appointment was tough!!)
Sometimes I’ll answer matter of factly, and have been repeatedly surprised by the results.
Some people will turn to my son and ask: "What’s your disability? Do you have scz? "
What!!!
I’m glad I don’t go off about privacy issues and how rude they are to ask…a child at that!
BUT, most of the time the person has a family member with scz, they just “know”. Usually they come from the time of serious stigmatization. (My mothers generation struggled with the dx, my mother/grandmother/uncle AND brother was dx, and it was not talked about. Still isn’t with them.) They almost always ask him if he is taking his meds? Then, when he doesn’t react in an upset manner (he doesn’t usually), they will beg him to remain on his meds, sharing their own heartbreak regarding their loved ones. IT HELPS!!! And yes…strangers have told us that their loved one committed suicide. It hits him hard. (One time, the man approached, he was my age (mid 40s) and his 35yo wife was just dx. He said he felt so alone ,and appreciated meeting my husband and son, as he was worried about the future for their young children.)
I also ask our son if I embarrassed him? OR, perhaps more important: did I speak of this subject in a respectful way? How does he feel about the dialogue that just happened? What does he think?
He says it’s better for him if I explain. We have found too many people who actually “know”. The statistics are high for what we call at home “standard scz”. Our older son is at high risk for the standard scz that occurs in the early 20’s. Our younger son has the Early Onset form.
Both boys say that talking about it helps. BUT, what they are really referring to is this: It’s okay for me to talk to people about it. In front of them too…but I do the talking. They aren’t talking. Older son said he found a few people on line who will talk, but he waits a long time before opening up to them. The ones with siblings have really helped him, as they tend to be private too.
My husband is in a powerful position at his work. The competition and pressure is tremendous. He is naturally quiet and reserved as well. However, I have noticed over the years that he will find a few men (it’s a male field) who “get it”. He doesn’t talk to them alot, but he does reach out with certain people. Often, they have personal experience and appreciate the quiet and discreet support. They can’t have “this” interfere with their day at work, and they can’t really talk about it…but just knowing that someone understands seems to help husband. The stigma seems to be strongest felt within my husbands field of employment, and within our parents generation.
When our son was dx, and the family found out…that’s when we learned that there was more dx history in our bloodlines than we had realized!!! They only confirmed and then grew silent. Neither side of grandparents speak to our son. There’s just silence on the subject of scz. Been this way for years.
Our son who is dx will now have short conversations with strangers about scz. I learn a lot from him talking to others. They have asked him directly why there is such an issue with med compliance? He answeres about the side effects, and the head trips. He said he believes he helps be the voice for the ones who aren’t taking the meds, as he “gets it”.
What I don’t appreciate is that some people will blurt out LOUDLY that they know all about scz, and isn’t it amazing how many different personalities and names a person can have? Nooooo, you’re talking about Multiple Personality Disorder…not schizophrenia.
Must remember he’s almost 14yo. In some ways he’s like a 10 year old, other times, I swear he’s an old man.
Bottom line? I tell people in general. Why? We have moved 18 times in 10 years for my husbands job. IF our son leaves and is wandering around the neighborhood, someone will notice and know what to do at least. It’s happened, and people are generally very kind.
Example: a school bus LOST our son in Utah. They called out extra buses and drove my older son and I around until the younger was found. He was in the midst of a psych break in Salt Lake City. Everyone was informed, everyone searched and everyone helped him get settled down. He was 9 years old and newly diagnosed!!! Everyone searched, and it turned out okay. We also learned a lot!!!
It seems that we meet a lot of people who have a relative or friend with scz. The last apartment we moved to had regular maintenance people. I introduced myself, told them the situation, and right away TWO young men said they had a brother and a cousin each who were dx. That was all it takes. They programmed my phone number into their phones, were introduced to our son. An agreement was easily made that should anything ever happen, if (our son) was out and confused, he could just find one of them. They would keep a look out, and be available. They did…others have too. For our son, it’s the validation that he is not the only one. We have a new apartment, and neighbors on both sides have done the same.
When he’s having a really hard time, husband has asked that he wear a brighter tshirt. He likes this, as husband must wear bright yellow shirts at work, so son will borrow one of these. (He’s a big boy and fits Dad’s shirts already.) The reason? We can find him if he’s lost. We also take a picture of the boys just as we enter an event or large crowd. We then have a family picture of what he looks like THAT DAY. Should he get lost, we have a current understanding of what he is wearing. It’s easier to get others to help search if necessary, as they know what to look for. I jot down our contact info on a 3x5 card which goes in his pocket.
The other thing? Husband has tracking programs on sons phone. The lock screen on the phone has our telephone numbers on it too. He can’t remember things when he’s stressed, but we can be found if the worst case scenario happens of his getting lost.
Another safety aspect: son asked that we reinstall the baby lock on the backdoors of our Jeep. Why? He said the voices really command for him to join them outside the vehicle…while it’s driving. He was trying to manage it, but was becoming scared that he might submit. We also agreed to his request that we discreetly open the back door when we park so “no one will know”.
I’m glad he told us. When he was little, he tried to jump out. We didn’t know what was going on, but years later it was still an issue apparently.
Sorry for the length of this…I just wanted you to know WHY we tell others. Our situation is unique with the moving frequently…but we have learned that people are really pretty cool and quite encouraging! That makes disclosure not only necessary, but beneficial in my opinion.
(Still have never met anyone with Early Onset dx until this forum. Thank you especially!)