Sleep

New parents are famously sleep deprived. So much so that when the occasional news story comes out that some parent drove off with their baby still sitting in his basket on top of the car, people are appalled but not really surprised. So it is with some despair that I find myself chronically sleep deprived some 14 years after the birth of my last child.

My children, with all their various quirks, insomniac habits, and need for either constant supervision or complete and total personal care, have left me with permanent new parent syndrome.

The Clouds are Gathering

Daughter number one has been doing well for a few months, keeping her schedule and maintaining a normal approach to life. But I think she's slipping. I see the signs beginning to show their slippery little heads.

For borderline personality disorder, these are the signs I see lining up in her behavior:
phases of mild mania
erratic sleep pattern
failure to do parts of her mandated routine
increasing inattention (taking the night meds in morning, or vice versa, or forgetting to take meds at all)
drop in grades
inadequately doing the parts of her routine she is still doing
asking really dumb questions (is it okay to sleep with hair spray in my hair? is it okay to use this plate instead of the other plate for my hot dog?)

All of these signs are small, but they are gathering up and increasing and coupled with the fact that she has started to stand right in front of me and make faces again, just to literally get me to look at her, I figure this all means that she is cycling and will start inventing ailments again or manufacturing a crisis.

Let's count the days - although her dad and I now have better recognition skills and an arsenal of mental restraints to use to try and contain her through this. Let's hope we're good enough to keep everything under control this time.

It's a Big Theme

I thought that writing things down and thinking them through on this blog would be helpful to me and to others who have serious medical and psychiatric issues to contend with in their loved ones. What I find is that writing these things down is hard. Knowing what I want to say is hard sometimes, but more often, finding the time and energy is hard. The last year and the last six months in particular have been harder than any other period in my life, and the parade of serious issues - any one of which should have taken all my time and attention - has been non-stop and stunningly severe. So much so that I hestitate to even write them for fear that readers will believe that I am the family member with borderline personality disorder. When I sit back and review from an observers vantage point the list of things we have dealt with in this house I cannot trust that anyone will believe the truth of what is written. I physically don't have the time in the day to gve attention to all the needs, let alone write about all of them. We won't get into the emotional resources necessary to handle all this, because I ran out. I had to pick one issue to throw completely under the bus. Which left me with no enough for the rest, but at least there was a little for the rest.

So tomorrow I will begin to write in concrete words, not the vague psychic spillage that has been this post.

Can't We All Get Along, redux

It can be hard to get to know people that aren't like you. The reasons are many. Sometimes it's as simple as just not being around each other. Other times it's differences in communication methods, or fear, or nervousness, or pre-conceptions that make it difficult for us to hear what's really being communicated.

Blogger "Mama Be Good" has reached out to families with special needs kids and families with just plain special kids, and asked them to talk about talking to each other. It's wonderful and worthwhile stuff. Take a look.

Will Health Insurance Be Better?

I don't have health insurance.

I'd like to have some. I can afford to go to a doctor when I am sick but I'm really afraid to go unless I already know what my problem is. And I'm afraid to go for a regular check-up. Why? Because if it turns out I have a disease, then I'll never be able to get health insurance. Early treatment is critical for most serious illness, but once you have a diagnosis you're unable to get insurance if you didn't already have it. So, I have simply avoided doing anything that might reveal that I have a health condition. Stupid? Maybe, but not under the insurance system that we have had up until today.

A year ago I tried to get health insurance for myself and my husband. But he was turned down by every company I tried, because he has been diagnosed and treated for depression. He wasn't being treated at the time I was applying for insurance. He wasn't having a depressive episode. And when he has been in treatment, it hasn't been particularly expensive. But because of it, he was turned down for insurance by all the companies I could afford.

He could have gotten insurance through the high risk pool run by the state we live in. But that is basically a joke. Although it is available and they will take people with extremely high risk health conditions, the cost is astronomical, and we couldn't even begin to come up with a budget that would have allowed us to purchase it. Not unless we gave up electricity and all food but rice and beans.

Today the health insurance reform bill was signed. I don't know very much about how it will directly affect us yet, but I do know that my husband won't be turned down for coverage any more. I don't know what it will cost, or how well it will actually cover our needs. But at least we won't be afraid to go to the doctor anymore.

Health Insurance

Health care should be accessible whether or not the individual has health insurance. Plenty of people who have health insurance now can't get the health care that they need because of games being played by the health insurance companies.

Pass a bill. But don't confuse insurance with care. Insurance will NEVER care about health.

Good insights

Came across a great blog today. It is intelligent, sharp and personal on the subject of mental illness. I have already added it to my bloglist, but thought it deserved a special mention. http://blogs.psychcentral.com/depression/2010/03/in-the-shoes-of-the-parent-of-a-child-with-bipolar/

One of the posts on this blog also references guidelines that have been developed for use by journalists in reporting on suicides. I don't think they are widely known. At least, they are not widely followed, so I am mentioning them here as well. If you are a journalist or editor, take a look.

http://www.afsp.org/index.cfm?fuseaction=home.viewPage&page_id=7852EBBC-9FB2-6691-54125A1AD4221E49

The kids that don't grow up and out

When I first had kids, a recurring piece of advice from older parents was to recognize that my life would be all about the kids for the next ten years. After that, the traditional advice goes, you begin to have time to do things other than take care of kids, and when they grow up and move out you'll miss them but you can go back to spending time on your own hobbies.

The traditional advice doesn't apply when you have special needs kids. The older my kids get, my time and mental energy continues to be consumed by them. One child has physical disabilities and the older and bigger he gets, the more time it takes me to bathe, dress and groom him. A "quick" bath was possible when he weighed forty pounds, but as a full grown man, moving him is never "quick." Plus he now needs to shave, etc.

The other two kids with special needs don't need physical help, but they do need near-constant supervision. Which means no running out to the store. No sitting and reading a book for more than ten minutes at a time. No starting the day without creating a plan and schedule for the two of them that will cover nearly all the minutes in the day. Free time for them is a request for chaos. I do try to avoid chaos as much as possible.

My days are full. My nights are spent considering how they will live when they are grown. Considering how they will live when I can no longer physically move my son by myself. how they - and I - will live when they no longer have school to go to everyday. How they will live when my daughter has the legal right to leave home and avoid my constant supervision (remember the chaos thing?).

My situation is exacerbated by the fact that I have more than one special needs child, but every parent with special needs kids has the same trajectory. Devote all your waking time to your kids when they are infants and toddlers, gain a little free time when they start school, go back to devoting all your waking time, and often, many of the night time hours as well if you have insomniac children like I do, to your kids when they grow older.

It's just different. And sometimes, it's lonely.

Counting Days without Drama

For our child with borderline personality disorder, drama is like an addiction. Even when she knows it is bad for her, even when she recognizes that she is creating drama, she is compelled to indulge in it. Always with results that end in her losing control of the situation, sometimes with results that hurt someone or many people around her.

The way we have chosen to deal with it on a day to day basis is to think of it exactly like an addiction. AA teaches alcoholics to take things one day at a time, and that every day without a drink is a good day, a day that they are in recovery. One drink will start it all over. They are taught that there is no permanent state of recovery, and vigilance every day is the only way to stay in recovery. So we have my daughter count days without drama. We know that every day is a battle for recovery, and any day could be a bad day. But every day without drama is a good day.

State of Catastrophe

I'm learning about borderline personality disorder now. It turns out that we can now semi-officially acknowledge a diagnosis of borderline personality disorder for the daughter that now still officially carries the diagnosis of bipolar disorder.

The articles on BPD tell us that it is a difficult condition to treat, but that there is hope. The medical professionals tell us that it is a difficult condition to treat, but that there is hope.

The family members on the support forums tell us, "it will never get better."

Of all the hard things I have done in my life - and with lots of disabilities and debilitating diseases in my family there have been many - this is by far the hardest so far. I see in front of me a perfectly ordinary young woman who is thoughtful, intelligent, and often delightful to be around. But what I know is that she is unreliable, manipulative, a liar, and completely oblivious to the normal rules of ethics and morality and empathy if they are a hindrance to what she wants at that moment.

This mostly delightful, ordinary child who we have long thought of as having some difficulties took a tailspin during the last two months of the year into places that I would have previously said there was no conceivable way she would do anything like that.

And yet, she did.

Which means she could do so again. No matter how ordinary and normal she seems at any given moment.

I can no longer afford to trust anything she says or does. There is simply too much danger in being wrong, both for her and for the rest of the family.

The ultimatum we have had to give her, and the choke collar that we now have her on, are some of the most difficult things I have ever had to do. And there will be no end. I cannot ever let down the guard and just believe what she says.

So I have had to reshape my relationship with this girl. I have had to form her into a different person in my mind. I don't like what she is now to me, and until I learn to completely accept the person that she is, as opposed to the person that we all thought she was, it will continue to be painful on a daily basis. She is handicapped far more than her brothers, and will be just as unable to take care of herself int eh future as they will be. The difference is that she has the capacity to do harm to others.

It is hard to dislike your child.