Maybe if I talk about this enough and write about it enough, residential placement will seem less surreal. My son was having a tough go of it recently, and consequently, so have we as a family. We're again considering the possibility of residential placement for him.
He's on the autism spectrum -- very mild. One of the psychiatrists he's seen said that he'll probably end up being more "quirky" than most people. He's not great in the social department, likes to focus on his topics of conversation (trains, dinosaurs, fish, trains, dinosaurs, fish), and often gets "stuck" on his mad feelings. But whatever. It's not a big deal, as far as being on the spectrum isn't a big deal.
He's also got ADHD and Sensory Processing Disorder (can you be on the autism spectrum and not have SPD?) and anxiety. It's the anxiety that is the culprit here. It's the anxiety that we're having such an awful time managing.
He doesn't do anxiety like most people with severe anxiety do anxiety. He glides past the heart-pounding panic attacks and goes from that very heightened frightened state to psychosis. Clinical psychotic episodes are pretty rare for anyone, let alone a six-year-old. I mean, let's face it, kids are basically psychotic and imagine things all the time. But when I say my son is psychotic, I mean psychotic in the most horrible of ways -- where the imaginary ideas threaten to hurt him.
I think if he were simply hallucinating and delusional without the aggression, we'd be fine. But added to his mix of breaks with reality is fight, as in "fight or flight." When my son gets scared, he does fight, and fight with a physically gifted child has become unsafe in our house. On the dramatic end, I've been kicked down 9 steps on our stairway because "Bowser, Jr. was on the wall and told him to do it." In more everyday circumstances, I am usually sporting some bruise or scratch due to him.
What's hard for us is that while the PDD-NOS spectrum symptoms are present nearly always, anxiety with psychotic features (my diagnosis) isn't always apparent. He could go for days and days and days without an incident. Hell, he went for nearly nine months without one. But when they come back, they come with a vengance, which is when our household becomes unsafe.
So the question is whether to ride out the storms, which can be excruciatingly intense but then can dissipate (in which case things are "fine"), or to place him outside of our home where he can get the help that he needs for those times of trouble.
This has been a question that my husband and I don't see eye-to-eye on. Why should we, though? He's bigger than I am and can take my son's physical aggression more than me. I think he's feeling guilty that he can't always be with us to protect us. But that's just the way life goes, right? I mean if we could be everywhere and everything to everyone, would that make us something more in the category of a god than a human?
We're taking the road to residential placement slowly. I want to get another neuropsych work-up on my son, which takes a while. He's on the wait-list to begin testing sometime in June, which should take some weeks, and then we wait for the write-up, which takes some more weeks. The point is to spend time observing and really assessing our household and family life to try to figure out if this is in the best interest of our son and our family.
I'm not sure how people ever come to accept or determine that it's time for their minor child to live somewhere else, but I guess I'm starting to learn.
My heart aches for you to even have to consider something so extreme for your child. Is there no one who can go to bat for your family to push the evalutions up to, oh like, immediately? It certainly seems as if a professional should see your son when he is those moments of psychosis and see that he truly can be a threat to both himself and others.ReplyDelete
I'm sure you've already thought of it, but can you video some of these episodes to show to evaluators or others who might be able to help you? I know, so much easier said than done in the moments they're happening; we've tried to capture our son's severe episodes of pain-induced SIB's but it's hard.
Sending you prayers and thoughts of strength. And a sincere wish that your son gets the help he needs so he can remain with the family.
When my Mother talked my Father into moving my Grandmother with dementia to a home she finally had to say "what would you do if she wandered away, or fell down the stairs". Cruel, but true. What would your husband do if he was at work and someone got hurt or killed while he was gone??ReplyDelete
Even if he isn't convinced it's time to start the paperwork as you've done. Document all incidents and as others have said, tape them if you can. Do you even know what the waitlist time is?? Is there a particular placement? What are the rules - which is one of the problems parents with children with autism are having since after 1yr they become wards of the State here in Ont.
Lot's to think about. You may never move him, but it's better to be prepared, just incase.
When we were having behavioural problems with my eldest - we're down to the 10yr old mouthies and moodies - at the time it was furniture crashing and head slamming and he was 6 - one of the FSW I saw said that the "mild" one's tended to have the most excessive behaviours. They didn't know why. That theory holds true in our house.
Whenever you write about this conflict I think to myself how horrendous. My heart aches for you as a mother and the seeming impossibility of this situation. It makes me angry that these choices -- to keep your beloved son at home where he is a danger to you and your family or to place him in another home and break your heart -- are what you face. I think how inadequate words are and must be to describe this sort of thing.ReplyDelete
In my own darkest hours, I'm not sure what grace visits me to sustain me. But it does. Your love and strength demand that grace. I will pray for it for you and your family and insist that it comes when it needs to come.
I sincerely feel for you and your family. My son's episodes aren't as dramatic as yours (yet?) but I, too, have the scratches and bruises from sharp nails that constantly dig into me from frustration and seemingly unfounded anger. I can't stop the thoughts in my head about how I will deal with all of this when he gets bigger. He is 60 lbs. and so strong right now as it is.ReplyDelete
I know that whatever decision you come to--whenever you need to come to it--will be the right one.
Hug to you.
What a tough decision. I know that in our darkest hours with our daughter, I foresaw this exact situation that you are describing. And she was only 3 at the time! I remember telling my husband that if we lived in a different time our daughter would be institutionalized. But I think I was projecting my thoughts to the future and thinking exactly what you are thinking.ReplyDelete
Since you say that he can go for a time without the psychotic episodes, can I ask again if you have ever tried antibiotics? I'm not trying to minimize this in any way. Its jut that everything you describe sounds so incredibly familiar to me. I know how hard and draining this is and I feel for you. I wish that I could help and I know that really no one can help you and that is what makes it so hard!!! I will be thinking of you.
Sending support and a hug your way.ReplyDelete
I am so sorry this is happening in your family. What a horrible decision to have to make.ReplyDelete
Have you read the book Saving Sammy? I don't mean to overstep and offer suggestions without knowing a thing about you, but PANDAS can have dramatic psychotic flare ups and then go away, etc. I'm sure you've already done a ton of research but just thought I'd put that out there.
Sending you warm thoughts for safety and peace.