Thursday, December 27, 2012

Welcome to Holland...again

Note: I am a very open person. The posts I write are always about my life and I have no problem sharing them with the world. But I am aware that the internet is a place where what you write might be used against you and in the interest of my children's privacy I have decided to keep their names private. I am also keeping my husband's name private. Our family, friends, and acquaintances can easily identify who each person is in my posts but this way their personal information wont be shared with every Tom, Dick, and Harry with access to a computer. Thanks for bearing with me. From this day forward the children shall be known as Peanut, Little Pixy (of the trouble making variety), and Mr. Serious or P, LP, and MS. And then there is my partner in crime, K.


     Have you ever read the poem Welcome to Holland? I have. In fact, I think I have read it about 20 times in my life. I used to work with some amazing children that had autism and I would often see that poem on autism websites, blogs, and literature. Every time I read it I thought, what a beautiful way to look at your life having a child with a disability. It's honest, sad, and then hopeful all at once. And even though I had read it many times before I had never cried while reading it. That is until I read it tonight. 

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......   
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Emily Perl Kingsley  1987


     I mentioned in my last blog about Mr. Serious being diagnosed with OCD and ADHD. I felt his doctor had not really done much of a proper evaluation and once they had diagnosed him they basically threw some medication at him and then tacked on additional medications as he had more side effects from the one before. Within three months he had already been on 5 different medications, 3 just to alleviate side effects from the original medication. And as for therapy I had read that the most effect method for treating a child with OCD was with CBT, or cognitive behavior therapy. But that's not what he received at the psychologist's office. He got talk therapy because she felt a young child could not properly participate in CBT. This would have been fine except that talk therapy often makes anxiety worse, not better. I felt like this doctor's office was missing the mark. So we took him to a place that specializes in children's mental health. 
I think it was the best decision we ever made. 

   This new place spent three months evaluating our son.Every session was tough on our checkbook but made our hearts feel a little lighter. Our son had connected with the doctor and he finally met with us to give us his impressions and possible diagnosis. Turns out the last doctor had been dead on about the OCD. But he had missed something. Once MS began on meds last January, his tantrums turned into full blown rage episodes. And when he wasn't raging he was depressed. And that's when we had to accept that we were headed to Holland once again because our son was recently diagnosed with bipolar disorder. 
 
      And so tonight I cried when I read that poem. 
I cry a lot these days. I cry because even though he is finally doing a little better on a mood stabilizer, he still rages. They don't last quite as long as they used to last but they still occur, almost every single day and often more than once a day. He has called me every name in the book during his rage episodes, threatened to hurt me, broken things, told me I am a horrible mother, and that he wishes I were dead. It's tough not to take it personally especially when I gave up a very bright future in my field to be at home with my children.  I cry because when he isn't raging he is often talking with pressured speech which is basically like listening to someone with ADHD times a thousand. He speaks quickly, without stopping, almost as if compelled to speak and he cannot be interrupted. He tends to use pressured speech right before a manic episode so I have learned to try and head him off at the pass. It doesn't always work but it helps sometimes.

   I cry because when he isn't manic he is often depressed. He asks why he was ever born and talks about wanting to be in heaven so that he would not have to live this miserable life. I cry because when his sister, Little Pixy, talks to me alone she asks why her big brother is the way he is and why can't he ever be like he used to be. The week before Christmas LP told me all she wanted was for her brother to be normal and for her family to be happy again and she said it all while sobbing uncontrollably. That day I think I might have cried a river of tears, all in private of course. I would never want the Pixy to feel more sadness from her mom and I really don't want Mr. Serious to feel responsible for something he cannot control. 

     I cry because it is heart wrenching and heart breaking when your 8 year old son is raging so badly that you actually have to consider taking him in for a psychiatric hold. I cry because his illness causes us to retreat and withdraw from our lives because we never know when or where he might be triggered into a rage. I cry because despite the millions of children who suffer from mental illness in the US, there is almost no support for them or us. In a city of over a million people there are no groups for children my son's age, no groups for children with mentally ill siblings, and only one group that meets for 2 hours total per month for parents struggling with their mentally ill child/children.

     
Having a mentally ill child is painful. On the outside they look normal. But when my son is in that dark place and we are in the middle of Target, he has no problem unleashing a barrage of obscenities because he wants to leave. I belong to a few Facebook groups for moms like me and many other moms write that they have heard every comment in the book about how spoiled their children are and what horrible mothers they are. I think that perhaps I shoot daggers from my eyes because no one has ever said anything to me and God help the first person who does. It's tough enough seeing how the media portrays the mentally ill and knowing that your child will forever battle the stigma, but when people start offering unsolicited advice it just makes you feel so incompetent and it makes my blood boil. Believe me, when we walked into the doctor's office that dreadful day I was praying to God in heaven that he would say, "Well Mr and Mrs. Parents of Troubled Child, it looks like there's absolutely nothing wrong with your boy. Not a thing. It just so happens that you both absolutely suck at parenting. Some of the worst parents I have seen in fact. Horrible, no good, totally spoiling your child." But that's not what he said. And so now this is our reality. 

     My son must take medication several times per day, most likely for the rest of his life. And once he is finally stable on medication there is a good chance he could become unstable again every time he goes through a growth spurt or when he reaches puberty. Our lives are currently spent trying to keep him as stable as possible. The best way to do that is to place as few demands as possible on him. Not always an easy task especially when he has to do schoolwork or share with his sister.They say families of mentally ill children often suffer from post traumatic stress disorder. We have to walk on eggshells because we never know what or who might set him off. And then he rages, and then he comes down and feels remorseful, and the cycle begins again, much like an abusive relationship. 

     Simply put, it is as close to hell as I ever care to get. There really is no other way to describe it. I have heard more than once that we should be grateful that it is not something far worse. But for us, for our son, at this moment in time, it could not be worse. Yes, my son is alive and healthy in a physical sense. But what about his quality of life? I used to ponder what my son would be like when he got older. Would he go to the same college that I did? What would he major in? Who would he marry? How many children would he have? 
Now? Now I think, will my son make it through elementary school without having to be hospitalized? Will he graduate high school? Will he even be stable enough to make it through college? Nearly one third of those suffering from bipolar disorder will attempt to take their life at least once. 
Nearly 20% of them will be successful. 
That is a scary high percentage and it is a number that never leaves my mind. Ever.
There have been a few studies done on how families grieve their child's disability and it has been found that these families grieve just as long as families with children who have died. It used to seem odd to me how a family could be that upset when their child was still alive. 

Now it is us who are grieving.
Now it makes sense. 
But we try to find joy in our son's small triumphs. When he has a day where he regains control quickly, we celebrate it. When he shares with his sister without asking, we celebrate it. When it seems like he is actually feeling empathy for someone else, we celebrate it. When we see him experiencing joy in his troubled life, we celebrate it. And we do our best to advocate for our son. We are his voice until he is old enough to have his own.  And like many trials in life his journey through mental illness is not the only one he faces. We have discovered in the last year that he has trouble with reading multi-syllable words, he continues to reverse letters and numbers, and his education coordinator agrees that he is having fine motor difficulties and this is making writing a lot tougher than it needs to be. So we have are also in the middle of having him evaluated for services for possible learning disabilities. That saying, when it rains it pours, is apparently very true for him. 

     We do try and focus on the positive as difficult as that is in the middle of a storm. Our son is a kind and gentle soul when he is stable. He is really good at math and building things in Minecraft. He is a witty kid and loves to make us laugh. He is very agreeable with friends and has no trouble making them wherever he goes . He has a good ear for music, loves to sing and dance, and enjoys painting and drawing. He is also a quick learner and loves his martial arts class. 

Does it sound like I am feeling sorry for myself? I am. I won't deny it. But mostly, I feel sorry for him. I wish I could take away all his struggles and carry all his pain, but it is his path to walk.
When he was a baby I would hold him while I rocked him to sleep and I sang to him a James Taylor song he seemed to love. Now this is the song I sing to my precious son:





Wednesday, January 11, 2012

"...I have issues?"

It was a typical trip to the grocery store.
Little Pixy (LP) was whining loudly, asking to be taken out of the cart and then put back in and then out again.
I continued to grab the things I needed as quickly as possible while watching her from the corner of my eye.
Every now and then I would catch her attempting to stand up and climb from the cart herself while demanding this or that from the store shelves.
Occasionally she would let out a high pitched screech just in case there were a few people in the store who had yet to notice us.
Mr. Serious (MS) was trying to tell me about a thought he had just had but I was ignoring him while I wrestled with the little beast.
I could tell he was beginning to melt down.
I just wanted to get the last few things on my list and high tail it out of Vons before anyone I knew saw us.

He was wringing his hands.
"Mr. Serious, we can talk about this when we are done, okay?"
"But, but, I neeeeed to tell you this right now!"
His voice was quivering and getting louder, and I could see his legs begin to twitch as he bounced up and down with his long surfer-like hair bouncing along with him.
"I know sweetie, I know, but...LP get down from there before you knock all those boxes down!"
"Mom,  please listen!"
His voice was projecting down the aisle and a woman with three quiet children turned and gave me one of those, what a brat kind of looks.
"MS, please stop," I whispered pleadingly.
"People are going to think you are crazy. They don't know you just have issues."
"What do you mean I have issues?"

This scene occurred about two months ago and I realize it was not one of my finest moments as a parent.
But it was typical of our outings.
MS had always been an anxious child and as he grew we accepted that his mini meltdowns were going to be a part of our lives.
I remember taking him to Disneyland when he was three.
We took him straight to the Casey Junior train.
He had seen the Dumbo movie probably thirty times and we knew he would love to ride the train just like in the movie.
But he was not excited.
He was not even indifferent.
What he was was frightened beyond comprehension about getting on that train.
While families with children smaller than my son passed us by in line our son freaked out, crying and crying about not wanting to ride the train.
Why was he so scared?
What was this really about?

We always thought he might have ADHD.
Or rather we tried to ignore the signs that he could have it.
But since I have ADHD and it runs like a raging wild fire through K's family, we kind of wondered which of our kids would be cursed with it as well.
MS has always had a difficult time with transitions, had trouble listening and following directions, avoided eye contact, talked nonstop and while moving constantly, got overwhelmed with sounds, smells, and textures, and was extremely emotionally reactive.
I knew these symptoms to be possible ADHD with possible sensory dysfunction.
That I knew how to handle.
But there were many things he did which we could not label.

He was always a cautious child.
At Chuck E Cheese he would avoid the climbing structure until he was almost five.
He feared swings, wasn't a huge fan of slides, and didn't like crowded places.
While most kids looked forward to fair and amusement park rides the mention of any such thing would send him into a panic.
As he got older his fears grew faster than we could understand.
He feared being alone in his room at night which we attributed to just being young.
But when he was afraid to be in his room alone during the day we began to wonder what could really be the cause.
Then he didn't want to go from one room to another without someone by his side.

About six months ago he became obsessed with always doing the right thing. He felt the need to confess to us about any lie he had ever told anyone and he was constantly asking me if Jesus would forgive him for telling a white lie. This was all coming from a kid who didn't even really know how to be untruthful.
Then one day when K was spraying insect spray in the house MS insisted he got the chemicals in his mouth, despite being out of the room when he was spraying. 
And so began his obsession with contamination.


Last month we moved into a new house and he began washing his hands repeatedly throughout the day. And if he touched something in the house he had to come check with me to see if it was okay. Within a week of moving in he was asking me hundreds of times per day if it was okay that he touched the wall, the staircase, his sister's shoe, and on and on.
One day I broke down and began crying when he had come into the room twenty times within five minutes to be reassured.
He cried too.
That day we called Kaiser and we were given an appointment the next day to see a psychologist.
Then we saw a psychiatrist.
They diagnosed Mr. Serious with ADHD, OCD, and possible sensory integration dysfunction.
Finally we had our answer. It was nothing that I wanted to hear but we needed to hear it.

He was put on medication to deal first with the OCD. From what the doctors said and from everything I have read, the medication to treat ADHD can make OCD symptoms even more severe.
That was two weeks ago. SSRI medications take several weeks to build up in the system so we haven't seen much change in his anxiety.
But during that time I have been researching OCD like crazy and have learned more from the parents in online forums than from the doctors we have seen.
I learned that MS had made me a part of his ritual of reassurance and that he would only get worse if I continued to reassure him. He had meltdowns when I had tried to ignore him before or when I had not listened to him fully but I decided if he was going to improve then I was going to have to let him experience the anxiety.
I sat him down and explained that I would no longer be answering him when he came to me for reassurance.
We discussed how nothing would happen if he did not tell me something and that it was only his mind tricking him.
He actually handled it really well and even though he tried to gain reassurance in other ways he has almost completely let go of that compulsion.
He has added some other minor rituals and he had a major meltdown in Walmart last week but overall he is really trying to take control and face his anxiety head on which I hear is really necessary if he is going to overcome it.
Unfortunately the medication for OCD has made his ADHD worse, a lot worse. He now literally talks nonstop, from the moment he wakes up, and has been having a really difficult time going to sleep. Being with him all day, every day has been trying on me and I often go into another room to silently scream. I know he can't help it and I know we need to conquer the OCD first but it is tough. I find myself praying often for the hours to pass quickly.
As parents we worry constantly about our children but with all of this comes even more worry.
I am worried that we will not be able to find a right balance of medication to help with both his ADHD and OCD.
I am worried that when life gets tougher as he gets older that he will be taken over by the OCD and he will be unable to function without compulsions.
I worry that his life will always be a struggle.
It's not fair but I try to remind myself it can always be worse.
He is a wonderful child who is creative, funny, and very loving and he is physically healthy.
His therapist said he seems like a tortured little boy.
As sad as that makes me feel to hear it, I agree.
But she is hopeful that one day he can enjoy life like any child should, excited about the world around him instead of fearful of everything.
I hope she is right.