The impact of raising a mentall ill child on the family

I don't know if there are any formal studies on what families go through when there is a mentally ill child in the house.  I bet there are.  I need to do some research.  For now I can say that with my family, and the many families I know, the impact is huge.  I'm going to list our family members and talk about the impact...good and bad....of having a family member with  mental illness.  Before I start I will say that this is OUR experience.  Oksana's mental illness (bipolar, ADHD, anxiety disorder, ASD, RAD, and suspected PTSD with brain damage on top of it all) manifests itself in aggression, both physical and verbal.  Many people with mental illness are not aggressive so their families may have very different experiences.  A family with a child who has similar diagnosis can have very different struggles.  Mental illness is way too complicated to say this is how it is for everyone.  Just ask her therapist and psychiatrist.  They see kids with various similar diagnosis every day and Oksana still stumps them. 

Mom and Dad - I wonder if there are any statistics that show the number of parents of mentally ill children who are on anti depressants or anti anxiety meds.  If there are I can already guess that the number is huge, and I'd also guess that a good percentage of those who aren't on them need to be.  Let's think about this.  Many of these parents are abused, either emotionally or physically, by their child.  All of them have suffered the loss of dreams and hopes for their child, themselves, and their other children.  Most of them feel lonely, don't have the support they need, and/or are blamed for their child's behavior.  And that's just the tip of the iceberg.  I will tell you that I too have had to look to medication to help me through this.  About a year and a half ago I would have panic attacks when I had to pick Oksana up from school.  As early as last week my heart started racing and I started sweating when I knew she was likely going to blow up over what I had to tell her.  In that particular case she didn't, but you never know when she will and you don't know what form it will take.  I've been berated and called every name in the book.  I've been scratched, bitten, and had my hair ripped out.  I've struggled with guilt.  Horrible, horrible, guilt because it's hard to like someone who hurts you.  I've shed more tears over her than my 3 other kids combined.  Now let me bring Larry into this.  As a couple we have been isolated.  We have to say no to a lot of fun things.  It took us a SOLID year to find a caregiver who could handle her so that we could get away.  We used her for the first time a few weeks ago and it was wonderful.  Larry struggles with the pain of watching me suffer.  He is amazing and takes on as much as he possibly can to help me, but he still worries what will happen when Oksana is bigger than me and he isn't home.  I was recently introduced to the term compassion fatigue.  This is the definition:  Compassion fatigue, also known as secondary traumatic stress (STS), is a condition characterized by a gradual lessening of compassion over time. It is common among individuals that work directly with trauma victims such as nurses, psychologists, and first responders. It was first diagnosed in nurses in the 1950s. Sufferers can exhibit several symptoms including hopelessness, a decrease in experiences of pleasure, constant stress and anxiety, sleeplessness or nightmares, and a pervasive negative attitude. This can have detrimental effects on individuals, both professionally and personally, including a decrease in productivity, the inability to focus, and the development of new feelings of incompetency and self-doubt.  I think this describes far more parents than we realize.

Now the good.  Oh goodness, we are stronger than we ever thought possible.  We are closer than we have ever been.  We are meeting some of the most amazing families and encouraging them while they encourage us.  We are incredibly blessed to have the most amazing support system of professionals and doctors of all sorts.  We have confronted some very ugly things about ourselves and have been forever changed in the process.  We are more compassionate, more patient, more loving.  We see pain in people where we never saw it before, and we meet them there because we understand.  Suffering has changed us in more ways than I can count.  I joke that I thought I was just fine before this and didn't really need it ;). 

Clayton and Evan - If I had to guess I would say that Evan takes this harder than Clayton.  A big reason for that is Evan is more of a target for Oksana.  She still has never gone after them physically, though we have trained them in what to do if she does, but she uses her incredible verbal skills to hurt them.  She targets Evan because she knows he will bite.  We have been training him in how to respond to her when she starts in on him so that he can stop it.  They have bedrooms downstairs and I think that makes a huge difference.  They always have the option to retreat down there and they use that option frequently.

I think the number one good thing that has happened in my boys is compassion.  They see the world differently because of Oksana.  They understand things that boys there age shouldn't have to even worry about, but they do it with the maturity of kids much older.  A couple of weeks ago we had an incident with Oksana.  She was physically attacking me and I had to put her into a hold to stop her.  Anya was disturbed by this and threw her yogurt across the room.  Yogurt was EVERYWHERE.  Clayton stepped right in, got towels, took Anya by the hand, and had her help him clean it all up while I dealt with Oksana.  I was so proud of him.  I personally think more good than bad has happened to the boys as a result of having a mentally ill sibling.  That doesn't mean it hasn't been terribly difficult, but it does mean that they have learned a lot and grown a lot through it.

Anya - We are just starting to see the impact on Anya.  Anya is confused by Oksana's behavior she vacillates between laughing at her (because quite honestly some of what she does is so ridiculous it is funny), and being very confused and upset.  Our biggest concern recently is that she is mimicking Oksana.  One example is that when she is mad she is now pulling or even ripping out her own hair (a common Oksana behavior).  We are also seeing some of the behaviors like throwing the yogurt that I mentioned above.  She was confused and scared and that was her response.  We have started having Anya removed from the situation when Oksana starts up.  We have a code word that we use with the boys.  When they hear the code word they get Anya and take her downstairs to play with her until we say she can come back up.  This protects her physically and emotionally. 

Picking out the good for Anya is harder because she really doesn't understand all of this.  She loves her sister no matter what.  Developmentally they still parallel play and don't interact with each other a ton, but Anya loves to be with her sister and wants to know where she is if she leaves.  When Oksana came back from respite a couple of weekends ago Anya was so excited to have her back!  Thankfully so far, even though the impact on Anya is concerning and has to be addressed, we have caught it early and we are working hard so that it will do minimal damage.

If this has done nothing else I hope that if you know someone who has a family member with mental illness you might understand a bit more about what they experience.  If you are a person with a family member with mental illness I hope you know that you are not alone.  We get it and I'd love to hear from you because it's good for me to know that I'm not alone either.  On a side note I do think we are entering another stretch of stability since Oksana's last med increase.  She is really leveling out and her aggressive incidents have decreased dramatically.  She is happier and more peaceful.  Now we enjoy it because we have no idea how long it will last!

Halloween and Oksana

I'm doing 2 updates in one here:

We had a great Halloween.  Oksana was with us until it was time to go to her respite center and then she had a fantastic time trick or treating with them.  I'm so thankful that she loves going there so much!  Anya was HILARIOUS!  Her first Halloween she had only been home 11 days.  She was horrified by the whole thing and wanted nothing to do with it.  Her second Halloween she refused to wear a costume and then screamed "NO!" at everyone when they opened their door to give her candy.  After a good handful of houses she figured out it wasn't so bad.  This year she was ALL IN.  She literally RAN to each house.  If they didn't open their door fast enough for her she opened it for them!  We got good exercise that night!  It was cold here so we took Anya to 15-20 houses and then asked her if she wanted to go home and eat some candy.  She was thrilled with that idea so it was a short lived evening!   The boys walked around with us but they didn't trick or treat.  They did dress up though as the 11th Doctor and The Master.  Doctor Who fans will know what I mean :)!  Their pumpkins were a castle (Oksana), Olaf (Anya), the crack in time (Clayton), and a Dalek (Evan).

So now an Oksana update.  A few weeks ago we had to increase Oksana's meds again.  She had significant aggressive episodes 5 out of 7 days and was requiring restraint in almost all of those.  The med increase might have helped slightly but she's still having a pretty hard time.  We are meeting with our IEP team on Monday and again in December.  On Monday we are discussing how she is doing currently.  We all want to be on the same page with the best approaches for her and make sure we are all on the right track still.  In December we will be meeting with the principal of the new school for kids with significant behavior issues in our district.  That school will be opening for the next school year.  I'm anxious to learn more about it.  As of right now there are no firm plans to move here there next year, but it is definitely not out of the question either.  Everyone seems pretty excited about this program and it might be a great fit for Oksana.  Next year would be a transition year for her anyway since she would have a new sped teacher.  I'm sort of feeling like if we are going to have to transition her anyway, and we all feel like this new school would be a good fit for her, then why not make the move.  Who knows.  I have a lot of questions to ask before we would decide something like that.  We had someone through our Regional Center come out today and train us in some basic methods to keep us and Oksana safe when she gets aggressive.  It was really good.  The last couple of days have been good for her.  I'm hoping it's a trend, but I know better than to hold my breath.

Right now I'm trying to take care of myself.  I'm feeling the weight of parenting Oksana lately and that usually means I'm not doing what I need to in order to stay emotionally healthy.  I think it's time for a date night and a massage!