I get a lot of unsolicited advice on dealing with Tim.
Most of it is meant with good intentions, I know that. Rarely do I get comments from buttinskis that mean their advice more to admonish my parenting than truly be helpful. Those are usually the people that have no freakin’ idea what we’re dealing with. I don’t get those anymore – mostly because, a few years ago, we stopped going out in public with Tim if he was unstable.
I get the good intentioned kind all over the place. My mother-in-law, bless her heart, truly means to be helpful when she comes to visit and, after being here for about a day, starts every fourth sentence with, “Maybe if you tried….”. I know she means well, and I know she does it out of love and a desire to be truly helpful, but it makes the hair on the back of my neck stand up.
Neighbors and friends sometimes offer ideas as well. I know that when these tips come, they come out of a place of support and sympathy.
I get comments here on the blog and emails from readers about alternative medicines and therapies, “new age” type stuff from all corners of the ether about cures, misdiagnoses, supplements, and how I’m “poisoning” my child with antipsychotic medication. Again, all come to me with a tone of support and desire to be helpful.
Please know – I appreciate anyone who takes the time to send me an idea, an article, advice, or something else to try. But just for the record, let me run down all of the techniques, medications, supplements, diets, and therapies we’ve tried to date:
Medications:
- Ritalin (that was a wild ride)
- Abilify
- Risperdal
- Depakote
- Seroquel (regular and XR)
- Lithium
- Geodon
- Lamictal
- Tegretol
- Invega
- Haldol
- Thorazine (which is still used for severely violent psychotic episodes only)
- Ativan
- Topamax
- Trileptal
- Clozaril
Supplements / Vitamins
- Vitamin E
- Vitamin B6
- Vitamin B complex
- Fish Oil
- Vitamin B12
Therapies
- Cognitive Behavioral Therapy
- Talk Therapy
- Play Therapy
- Occupational Therapy (for sensory integration issues)
- Speech Therapy
- Sensory Integration Therapy
- Points Systems
- Risk/Reward Technique
- Positive Parenting Technique
…That’s the bulk of it, but not the entire list. We haven’t tried each one individually, either. We’ve mixed, matched, taken out what hasn’t worked, added others. Right now, Tim is on a combination of Clozaril, Vitamin E, talk therapy, speech therapy, occupational therapy and point system.
I sometimes react badly when people try to give me unsolicited advice. Let me first say, I’m sorry. I don’t mean to seem ungrateful or annoyed by your attempt to be truly helpful. But please remember this – I belong to several different organizations dealing with children’s mental health, I belong to two support groups, I’ve read every book ever published, nearly every theory posted to the internet, and we’ve tried what sounds like it may have promise and discarded what sounds hokey. We have more than four doctors on “staff” and we’ve gone through more than a dozen others in three states. We’ve had more consulations and evaluations than I can count. It’s highly unlikely that what you will suggest we haven’t researched and either implemented or discarded.
My kid is on meds. Very heavy duty, atypical anti-psychotic medication. A medication with FIVE black box warnings from the FDA. And, right now, it keeps him from alternately trying to kill us or himself. Nothing else has.
Chrisa,
Since my previous comment wasn't posted, I can assume that you are referring to me amongst others. I do not send unsolicited advice, unless someone wants to take it that way. I say what I do as a way of having a dialogue with other people. I would never presume to tell you what to do with your own child Lord knows there are enough problems without well meaning people telling you what to do. When someone like me send comments, I send them because I am aware that other people read the comments section of the blogs and might want to get other viewpoints. Isn't that what a comments section is also for? I am puzzled that my comment wasn't published because nothing I said was offensive or directed at telling you that you are doing something wrong in your particular situation.
Hi – your last comment was about "curing" schizophrenia. No one has ever been "cured". The best we can do is, through medication, therapy, coping skills – whatever method works for you – have the best life possible with this chronic illness. Sure – we can hope for a cure, but good intentions aren't enough.
Comments are for dialogue between me, readers, and between readers, yes. But this is my diary – my coping with my child. I don't promote my blog, talk to the press, or have any intention to publish. 99% of my readers are blood relatives or longtime friends of my family. Hence, I post the comments I feel are relevant. Sorry – I don't mean to offend – but the idea of "curing" severe mental illness is a nice idea, but not a very realistic one. It's like saying you're hoping your son's diabetes will be cured through positive thinking. Parents go to jail for neglect for that.
I really appreciate this post. Thank you. My son started on Risperdal last year after an increasing difficult period. I was so excited about the effects that I made this mistake of telling some people that I haven't seen in years. One woman sent me a lot of articles and pamplets about the dangers of the medication.
It was as though I had just seen it in the drug store and said "Ooh, a heavy duty anti-psychotic! Neat! I wonder if my kid would like to chance diabetes and tardive dyskinesia!"
I know people mean well, but that kind of advice includes some ugly assumptions.
I don't even know how I found your blog. I think you are a fabulous writer, as is so often the case when we write from the heart and out of love. I wish you continual good blessings.
Sue
Mitten – for some reason, people who mean well seem to think we're illiterate.
Sue- thanks for your kind comments – they are most appreciated!
I'm departing the blogs since I could never equate and don't have anything to offer you. I just had one last thing to share with you. You say Tim finds patterns, so do I. You don't have to post this. Please don't. It's embarrassing. I thought it was kind'of cool because I've heard of many people with this disorder have number stories. I wondered if Tim has anything to share. I find them all of the time.
For 12, I have a magical box that I use:
12X13=156 2+3=5 2X3=6 100+50+6
12X14=168 2+4=6 2X4=8 100+60+8
It gets a little tricky with
12X15=180 2+5=7 2X5=10 100+70+10+0
12X16=192 2+6=8 2X6=12 100+80+10+2
12X17=204 2+7=9 2X7=14 100+90+10+4
You can use for 13, 14, you just have to pay attention to the extra rows of 10. I've only used it for 12 thus far.
I need a job, but they kept asking me if I'm disabled, and technically I am, and I can't lie, so it's hard.
They would know if they did a background check, I mean. Sorry. I hope Tim finds his control and peace.
That's a cool pattern trick – I'll have to show it to him next week when we visit. Tim is a whiz at the Rubic's cube. He figured out it was a pattern without looking up the "secrets" on the 'net.
Chrisa, good for you for posting this. You and Michael Schofield have shown an incredible amount of tolerance and restraint toward the commenters (especially one in particular, ahem, see first comment) who show up again and again and again INSISTING that if only you tried the latest herbal, quack treatment, your son would be "healed". As someone previously mentioned, this is not the place to push a nonsense, anti-medication agenda and I'm willing to bet everyone is sick of reading about it by now.
Keeping you and your family in my thoughts this weekend.
This is a wonderful post, wonderful. I have just started to read your blog and am so impressed by your positive attitude and resiliance. I see that you are involved with Jani Schofield and her family. I've been reading Michael's blog and it seems like him (and Susan) are lashing out at all the professionals that are trying to help them. I understand why they are angry but it seems so counter productive and a bit unfair. I am a social worker who has worked with children and adults with mental illness. I've also worked in a school district and on IEP teams. I hope you can help them realize that the majority of professionals out there really are doing everything they can to try and help. I know there are bad teachers, social workers and doctors out there. But there are so many more of us who are good–who want to give 110% to every child we work with, who take home the emotional stress of our jobs, who rage against the lack of funding and resources. My fear is that the Schofield family will further isolate themselves by refusing to believe that any professional truly cares about Jani. I hope you can help them with that. Blessings to you and your family.
Anon:
I totally understand what your're saying, but I totally get where Susan and Michael are coming from. You have to remember – we have 8 more years of experience at parenting a child with a severe mental illness. We have 11 years of IEPs under our belt. We've dealt with four school districts in three states, including two in California. We've been through the anger, the frustration, and we've gotten to the point where we know exactly what the law is and the most effective ways to advocate for Tim. Trust me – there are many SED administrators and teachers and school psychologists that wish they never met us. Hell – the head of SED for our current school district actually turns and walks away when she sees us coming!
The truth is, there are a lot of good SED teachers that want to do all they can for our kids, but for every good teacher there is an administrator that is under the directive to do EVERYTHING they can to deny services that bring up their average spend per student. I actually had our school district say that they don't see how Tim needs residential, but they wanted to do EVERYTHING they could to help us get the Individual Care Grant to put him in residential. They knew that's what was best for him, but they'd be damned if they were going to pay for it.
One of the reasons we left California was school districts like the one the Schofields live in. Not because of the teachers – because of the administration. We are lucky to live in the only state in the union with an entitlement program for children with severe mental illness – the ICG – to pay for either residential care or community-based (wrap around) services. There are less than 500 children in the state of Illinois that have an ICG grant – not because only 500 qualify, but because only 500 families have the stones it takes to get through the hellacious amount of paperwork and bureocracy it takes to get one. Tim's program is – and this is a conservative guess – 70% wards of the state. Kids from foster care. Some of them had parents that relinquished them to the state because they couldn't get services any other way. Some are children that had disrupted adoptions because social services never told them of the issues the child had when the adopted. It's sad – we actually had a well-respected child psychiatrist recommend we relinquish Tim to the state so that he could get treatment. No one should have to give up their child! What kind of twisted system is that?
I am happy to hear about 20/20 doing a piece on Jani, if for nothing else than to put another hour on national television for people to see that these kids and their families are suffering with no help from insurance companies, schools, or anyone else.
I thank you for your well wishes – Jules, thanks to you as well!
Chrisa,
You are so right, I did show my ignorance in forgetting the fact that your family has been dealing with our broken system so much longer than the Schofields.
Your comment about school districts knowing what the best treatment is but not wanting to pay for it hit me like a ton of bricks. I have been told specifically not to suggest certain outside resources because once I do, it makes the district financially responsible. It makes me sick. All of it.
Please tell me and others how we can help change this system. How we can help kids like Tim and Jani. So many of us in the helping professions feel well, helpless. I belong to professional associations, donate what I can, advocate with all my heart but I know I can do more. I need to do more.
Chrisa, I have no advice, I have no cures, I have nothing but my love and wishes that you may find comfort and support from your friends. You are in my thoughts and I will never know what you have gone through and are going through, your own private hell. Take care Chrisa, remember you are loved.