I’ve spent the past two weekends taking all the paperwork we have about Tim and putting it in chronological order and in to three ring binders. Twelve and a half years of paperwork, comprising every evaluation, every IEP, every page of every inpatient stay of Tim’s life, from Pre-K through last week. It took four, three-inch binders to hold it all. As I sorted through it all, I saw the progression of Tim’s illness in stark black and white.
What really startled me was the suggestions that Tim had Schizophrenia as far back as age eight. As I read their clinical notes I realized what they were trying to tell us back then but, for some reason, didn’t have the guts or the desire to label a child so young with such a diagnosis. I remembered the psychologist that recommended we give up our rights to get Tim treatment because he would need, as his notes read, intense mental health treatment, likely for the rest of his life. I remembered the therapist that gently told me Tim needed to be hospitalized and on meds, and that he would likely need several hospitalizations throughout his adolescence. I read the notes of his first inpatient stay, and how the psychiatrist noted daily that Tim was experiencing psychosis, and that he was most likely already had or was heading towards Schizophrenia, and I remember him trying to tell us, but he had been so amazingly uncommunicative with us during Tim’s time in the hospital that we wouldn’t hear him. Every one of those doctors did a psychological assessment of Tim and none of them were willing to put that word on paper – not a single one.
I spent a lot of “what if-ing” while collating and punching holes in those assessments. What if we had listened to that boorish doctor? What if any one of them had had the nerve to sit us down and tell us the truth, over and over until it sunk in? Would it have made a difference? Would we have gotten Tim better treatment? More appropriate schooling? Would we have been able to keep him home with community-based services rather than send him away? I drove myself a little batty playing the what if game for a few hours. But ruminating on all that led me to one of the reasons I write most everything down here. At first, it was to make sense of it all to myself. Eventually, as others who are traveling down this road started finding it, it became a way to commiserate, share information, and hopefully, give one family a smoother progression than ours, as can be witnessed in four, three-inch, three ring binders.
The "What Ifs" are killers. Please don't go there. {{{Hugs}}}
I don't know if this helps or not, but we were told when my daughter was very young, about 3 or 4 years old, I think. I remember nodding and thinking there was no way he could know that! I knew she had FAS and autistic characteristics were clearly there, but how could he possibly know schizophrenia? However, she has been under the care of an excellent psychiatrist since the age of 3. At home therapies, good school(until this year)
and the bottom line is, it is what it is. I don't know what I could do differently and she is 9. I think you do the best you can with what you're given. I know love can't cure this awful thing, but I think love and a close connection with us makes it easier for them to talk to us about this chaos that goes on in their heads. At this point, my daughter will tell me if the voices get too loud or tell her to do something bad. I am hoping this trust will help her as she gets older. I don't know, of course, but it is the one thing I know I can do. Chin up, you love Tim so much, I just don't believe there was anymore you could have done that you didn't do or are doing.
Chrisa,
Your words, this blog has made a huge impact in my journey down this road with Pickles. While it may not make the bumps go away, it does cushion them a bit. It was the inspiration for my starting mine. Just in the hopes to not only allow me to vent, but so that maybe someone else can take my hand in the darkness and lead them over their bumps the way your blog has done for me. Thank you!
Thanks to all of you for your comments. My regret is more retrospective than introspective, as it used to be. At this point, it is what it is. Hindsight is most definitely 20/20. If what we've been through helps just one other child, writing it all down here will have been well worth it. Having you here and leaving such supportive words sure does soothe me.
Chrisa, this comment is directed toward your last post… and I preface this by saying I know that you have the best intent with everything you do for Tim, that you love him and know him best. I have read every one of your blog entries and I read a lot of psychology/psychiatry and foster/adopt blogs. I have an extensive personal and family history of mental illness. I am sincere and not here to attack you or anyone else.
To make a long story long, what I want to say is it breaks my heart to hear you, and many other parents of the severely mentally ill, cast definitive negativity into their childrens' futures through comments suggesting they will be incapacitated by their symptoms/medications and require some form of child-like dependent care for life. Why? Because I am one of those children, grown up. I received no mental health treatment at all until the age of 17 despite my consistent violence toward myself and others, hallucinations, delusions, social isolation, and multiple suicide attempts. I spent a lot of time in "the system" from age 17-24ish, a significant amount of that time on heavy medication and being told I would never be able to function and might as well just apply for SSDI and seek some form long-term residential care. No one believed in me and no one ever had. How could I believe in myself?
I'm almost 27 now. It's really amazing, after a lifetime of despair, how much changed when I decided, for me, that I was going to teach myself to be as functional as possible, or (literally) die trying. I hadn't stepped outside the door of my apartment in 3 months. I was so afraid of water (a common element of my psychotic stretches) I couldn't shower, wash dishes, or even stand the thought of my clothes getting wet in the laundry. I was hoarding trash. I was regularly overdosing on diphenhydramine to induce dissociation and give myself relief from my voices. Not to mention, I had effectively no support system. I was living on credit and luck.
The past 3 years of baby steps (anything from putting my feet on the floor to walking to the mailbox to researching careers online might have the peak move of a given day) has added up, slowly, to a lot of progress. No magic to it.
Why am I telling this to a complete stranger? The same reason why I told it to Michael Schofield. Because I believe kids like Tim, Jani, and me can and do beat these illnesses. I have a full time job now, nothing glamorous or high stress, but where I make enough to support myself on my own in a modest lifestyle. I'm not taking any medication, though I once (no exaggeration) had 20 different prescriptions in my bathroom, all related to my mental issues. I'm married to a stable man who loves me (although I won't lie to you — the strain of what remains of my symptoms has been heavy on us.) I am not "neurotypical" and I never will be. A lot of people don't understand me and a lot of those people judge me harshly. But I am by no means dependent. I hope you keep your mind open to Tim's opportunities for such things, even though it might seem hopeless now. It is so important that he does not have the idea engendered in him that he is limited in his capabilities. I believe many people who have walked on the dark side of the brain have forgotten and/or had beaten out of them the true power of will, desire, and time combined.
Zell, first, good for you. I'm so glad to hear a story like yours. And I pray that for Tim that could be true. And maybe, in retrospect, my posts are more fatalistic than I intend. But right now, this is our reality. I'm fighting with the school to get things on his IEP like, "Tim will be able to make change for a $20 with 80% accuracy," and "Tim will increase his reading level from a 2nd grade to a 4th grade level as determined by standardized testing.".
One of the other stark awakenings about the progression of Tim's condition that organizing his paperwork revealed is just what kind of damage long term psychosis did to his IQ. He tested at 87 at age 5, 80 at age 8, 74 at 11, and 66 at 11. His last test at 14 was 62 (he's tested every 3 years as part of his IEP mandated triennial testing). That, as much as his mental health condition, is why I'm sure he will need some level of my care for life. I hope I'm wrong.
Typos, argh. Should have been 66 at 14, 62 at 15.
I hear you, Chrisa. That's a fair point. I have lost some IQ potential myself over the years… I actually come off as a lot more intelligent than I really am because my verbal skills are off the charts while everything else (things like basic math, spatial reasoning, empathy, frustration tolerance, common sense) are below average, embarrassingly so. I really appreciate such an understanding response from you, and I agree things look rough for him now. Maybe I'm just hoping for a miracle and projecting too much… maybe I just need to believe that what happened to me wasn't some kind of fluke and I could figure out how to help others with similar issues. I wish you the best, Chrisa.
Zell – I wish that too – so much!! Thanks for sharing your story. It does give me hope.
Just want to say that a parent always fears for their child's future – it's a natural response and it stems from the fact that we know we will likely leave this earth before our children and when one of them is so incapacitated it's terrifying. I hate the medicine I give my son, I hate that he has had few fond memories of childhood to carry with him in his life. I have heard other grown children tell me that they decided they were just fed up with their illness and did everything they could to care for themselves and have thus far been successful. If my son could grow up like Zell, I'd be the happiest mom on the planet!
Maybe Zell, you can tell us a little more about how to help our kids?
Bonnie
So, maybe now you can digitize all that stuff using the ThreeRing app for your iPhone. You can keep those cumbersome binders in a safe as backup but have digital, anywhere access to the records via the ThreeRing portal. Loads of uses for this amazing app.