There is no other word.
Our family has been struggling in an up-close-and-personal way with some form of mental illness for more than 10 years.
This is not a whine, a how-to or quite possibly anything constructive but might at be least cathartic for me.
I won’t use names to protect the innocent but it wouldn’t take a rocket scientist to figure it out. I’ll stick with the initials KJ to avoid at least the use of an impersonal pronoun.
We accepted another foster child in 2000. (Up to this point we had taken in perhaps maybe ten and were on our way to adopting three.) KJ came home from the hospital after recovering from severe burns at the hands of her biological father.
We knew from the git-go that KJ would always bear some physical scars from that horrible personal experience.
What we did not know was the internal damage that was done and how it could reach out and touch many others along the way.
Let’s back up. In the spring of 1995 we decided to pursue adoption of more children. We had two healthy normal girls but P... wanted to keep on “being a mom” so we began the process. I’m reminded of a drive to Silver Dollar City where we were going down a list of attributes, factors etc. to consider when adopting a child. There was (as I recall) a literal list of things you – as an adoptive parent – would consider (or not) in a prospective child. Valid questions all but when I think back on things we said and perhaps wrote down, I am struck by a couple of things: you’ll never know and you never know what may be hiding inside your child.
Five years or so later, we brought home a little girl. Her feet were all bandaged up and KJ had scars on her back from skin grafts to use on her severely burned feet.
I can’t honestly say I knew something from the beginning. But several months into our relationship, KJ and I spent an evening alone for the first time. What I recall is how she began to cry and I couldn’t do anything to stop her. I know, I know, this happens all the time. At that time I chalked it up to fear – fear of being alone with a male – from her experience only months earlier with her bio-father.
Fast-forward a couple of years. We began to notice things. And I’ll confess I’ve forgotten way more than I will remember. I think the brain has the capacity to un-recall unpleasant things; if we’ll let it.
But things began to happen. The typical terrible twos moved into the 3s and 4s and …
Some situations were pretty tough. But for the most part dealing with a screaming 4 or 5 year old is, again, often normal. Not saying good or acceptable, just not out of the realm of a reasonable expectation.
KJ began seeing a play therapist and somewhere in here is where we first heard the words; “bi-polar”.
Shocking as they were, they were not totally unexpected because we had learned that bio-mom and bio-dad were also bi-polar which I guess increases the odds of their off-spring being bi-polar in exponential ways.
So began other treatments and medications. Add a psychiatrist to the list. Add weight gain to the list of side effects. But bottom line overall, behaviors were a mixed bag; good days, bad days and some “absolutely no good horrible days.”
Again not pretending to have some insight but I always wondered about the bi-polar diagnosis. Can’t quote stats but in the last decade or so, juvenile bi-polar as a diagnosis has also grown exponentially. Yet some professionals in the field don’t even think it is possible; that it doesn’t manifest itself until late teens or even later. Again, a mixed bag.
But this is what we had, so we muddled along. I won’t bore you with details and day-by-day, let’s just say it has been a bumpy ride.
We tried various meds, natural remedies, different counselors and therapists and overall, plenty of ups and downs. Hopeful days and periods of peace and plenty of difficult days and periods of … let’s just say not peaceful or good.
Along this road we also encountered a long list of acronyms that would at one time or another be applied to our daughter: PTSD, ADD, ADHD, RAD, ODD. These are not mutually exclusive and can run along side one another (co-morbidity is the technical term), mimic one another in terms of symptoms, share some common therapies and treatments and in general just add to the ongoing confusion and struggles that ensued as we tried to determine what courses of action to take – some of these on a daily basis; others for the long term.
A couple of years ago we reached a breaking point as a family. Not the first one but one that screamed “Do something now!” So another change, another test etc. This indicated maybe some symptoms that moved toward the autism spectrum but nothing definite or specific.
So we continued pretty much the way we had been going.
A year or so later, another breaking point. This was resulted in a week-long stay at a facility several hours away. The goal – we thought – was to get her off ALL meds, re-evaluate and then decide what things should be continued or not. But about a week or so later (I think insurance limitations may have had some impact on the length of stay and quick diagnosis) KJ came home with a slightly different diagnosis and a different (slightly) regimen of meds.
I’ve lost track of which trial number this one might have been. But again we approached things with as much hope and optimism as we could.
But within the year, back to square one. This time (and with lots of meetings and help from various groups and individuals) KJ was sent to another facility. Again same initial goal – baseline – this is the word I guess where you remove all medications and then slowly re-introduce them along with monitoring etc. to see exactly what is going on. All done with medical and other professionals monitoring on a daily basis.
This facility was in KC so we burned up a lot of highway going back and forth for weekly visits (sometime even more often) until KJ came home for good in the summer of 2012.
Again this time with a revised diagnosis – not bi-polar but maybe just severe depression. And ADHD although my memory is fuzzy on exactly when this one first entered our lexicon. So meds are revised and we resume somewhat our routine again.
One beneficial side effect of the med change – weight loss. KJ lost a lot of weight and so far has not put it back on. That was never a huge issue for us but … I hope it has helped her self-esteem and is certainly healthier in the long run.
But little by little old behaviors and some new ones began to surface.
Add again another psychiatrist. We aren’t shopping around; the one we had been seeing retired or moved so we started with a new one.
We met him recently and for the first time in years – at least for me – we found someone who would talk to us, explain things in simple language and didn’t act like we were the fault or reason for behavior.
Now I’ll admit we have made plenty of mistakes along the way. When you aren’t sure if a behavior is caused by a medical reason, hormonal reason or just learned behavior, it makes discipline and related matters hard. You can’t punish a child for something they don’t know they are doing. You do try to stop bad things but you must be careful how you handle them and what you do. But mistakes were made.
Along the way it gets harder to know what things are organic, caused by meds or the absence of meds, environmental, dietary (sugar, caffeine etc.), inflicted by others (us included). None of this is as simple as pulling a hand away from a hot stove and slapping it.
We’ve gotten lots of good (and some questionable) advice along the way. I’m sure everyone has only been trying to help and had all our best interests at heart. But unless you live with something the better part of 24/7, your suggestions etc. may or may not work or be a good fit for the situation.
Back to the more recent present.
We learned on a recent visit to the new psych that ADHD manifests itself in ways we had been observing. We were treating this already but with a low medical dose and apparently it was not sufficient to really help with the ADHD and was allowing related behaviors to go unchecked. So the dose was increased. But in general we still see some of the same behaviors and they seem to be related to when the meds wear off. These types of medications work for awhile but then are used up. Otherwise you couldn’t sleep at night. And it was almost every night we’d be dealing with some issue.
So we are still working on that.
But as we progress more testing is being done.
Not too long ago a new word was added to our vocabulary, Asperger’s.
Not one you want to hear but given the earlier diagnosis which indicated the possibility of Autism, not entirely surprising.
On one level, I’d rather not have a label but yet a label at least narrows things down. But the tiny dangerous bit that I know about Asperger’s, every child and their behaviors and reactions to various stimuli, are going to be different. These are NOT one-size-fits-all diseases or mental illnesses.
I’ve begun visiting a new set of websites to see what this is about, where to find help, information – not unlike we did in the past when the bi-polar label was applied.
I’d like to have confidence in the newest diagnosis but given our track record, not so sure. I also am not happy with a label that KJ may carry for the rest of her life and the added indication that Asperger’s isn’t something you grow out of, treat for awhile and then you get well; this is beginning to look like something all of us will have to deal with for a long, long time (as if 10+ years is not a long time already!)
It can be comforting to have a label and at least it appears to narrow down your options. You don’t keep taking aspirin if what you really have is a cut on your hand. But Asperger’s is this huge thing and most definitely doesn’t follow the “one-size-fits-all” category.
I see support groups in our future. P... already is spending 2 or 3 afternoons a week dealing with some form of therapy.
I hadn’t planned on this having any spiritual component at all but my goal here is to get this out, to help me and maybe help someone else dealing with similar issues but, for years and especially for P... during one really difficult year on our lives, she leaned on Jeremiah 29:11; the “I know the plans I have for you” verse. I believed that, and still try to believe (Lord, help my unbelief!) but am really struggling with this part as it applies (I think) to our lives: “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”
It’s especially this part “…not to harm you.” But also the “give you hope and a future.” that I’m really struggling with right now. I looked it up in a couple of different versions and both substitute the word “evil” instead of harm. Well that’s very different. I don’t see what has happened to KJ and us as evil in the traditional sense of the word. Harm – I do believe all of us have been harmed; and the scars run deep and long. So I’m not sure where to go with this. If I hang on to the word “harm” then I find myself asking God why? Why are we being harmed and by whom?
We are now a few weeks into the Asperger’s diagnosis. Like it has always been; some days are good and some are not so good.
I’m reading this huge book on Asperger’s right now. One thing sticks out that it seems many parents agree on: getting the Asperger’s label is devasting but it also is a small odd comfort of sorts. It takes away the guilt and blame that so often accompany any child with behavorial issues. I can’t tell you how many people have intimated or downright said out loud that we were the problem. While our ignorance may have made some tough situations worse, at least we didn’t cause them. And little by little we may get a handle on those things that even KJ can’t control – at least not without some help.