Picking up the Pieces

I feel like everyday I pick up the pieces of the shatters, the fragments of my heart, soul and of my mind. Everyday I wake up and say it’s going to be different today; today it’s going to be better. Today is the day that the medications is going to work and therapy and all that I do for Ally will just click and she will transform like some magically fairytale and become the normal perfect child I so desperately I want her to become. But that’s a lie. I can’t just wish away a disease, nor can I hide out in my room till it goes away.

I am trying to find way to cope with her diagnosis because right now it rules my life. It makes me sick. I have been diagnosed with depression because it makes me sad as hell to know that she will have to live like this for the rest of her life. And she will have to learn to take care of herself and navigate life. I also have fibromyalgia and there are days where I the pain that is so bad I cant even get out of bed. But I do get up and go without pain medications because I have an 8 year old that needs me more. And I cry inside because no one understands the love of a mother until she becomes one herself.

Even my husband doesn’t understand how to handle our little girl. He tries but often ends up with upset and more then tears. We have a small circle of friends that I can turn to for emotional support but hard to go to for respite care.  It’s hard for me to trust because I have no idea how she will react, or how they will react to her.  But I am lucky in some regards for one neighbor Hope she gets me. She is there to listen to me cry and will hand me a glass of wine and help me formulate a plan on how to tackle the problems that arise. She will take Ally to the pool when I need a break.  And Hope is the first one to celebrate Ally’s small successes.

Lately there have been quite a few broken pieces. My sanity has suffered the most. Trying to keep your family together and whole while your 8 year old is on the warpath is hard. Trying to represent that your family is normally function military family isn’t easy. There is an expectation as an Officer’s wife of how you should look, act and be.  And there are days where I cant do that. I cant be who they want me to be. I can’t wear that mask. I have to ignore it and hurry home to my safe place and hide. I take it one day at a time. I know it will get better but today its one of those days where I am feeling down. But its ok for us mothers to have our pity days. It can’t always be sunshine and rainbows. We are only human.

There is no silver lining in childhood bipolar disorder

Sympathy is taking away from someone's suffering, trying to put a silver lining in it. Whereas empathy is connecting to the persons suffering which forms a comforting bond.  There is unique video that describes this http://youtu.be/1Evwgu369Jw. In effort to show more empathy with you, my readers I want you to know my story

I can’t even really describe to you when I noticed that something wasn’t quite right with Ally.  But I do know that it was at a very young age right around 10 months she still wasn’t meeting all the milestones you would typically see. She had a really hard time being separated from me, almost to the point of hysterical anxiety.  She didn’t really crawl but would butt drag across the floor. Ali would have meltdowns if she wore certain types of clothes and always tended to run hot even in the dead of winter. By time she was 18 months she still wasn’t talking. Early intervention didn’t really help, they just said she was delayed by 6 months and needed speech therapy. But a mother knows and my heart sank because no one would address my other worries.

By the time she was 3 she started showing what I believe to be typical signs of bipolar disorder.  She would have rages if we said no to her. If we set limits she would bite me or hit me.  She would have wonky sleep cycles. Some days she would go to bed at 6pm and sleep til 11am. Other times she would stay up til 11 pm and wake up at 4am.  But the scariest mom moment was when I would catch her doing some scary things that I thought were a call for help but the Dr just thought it was kid stuff.  She would frequently put plastic bags over her head. Or I would catch her with belts pulled so tightly that I wondered how she was still able to breathe. This frankly scared the shit out of me but the Doctors were unfazed.

Once she started preschool the child psychologist she did she that Ally had behavioral issues. She saw that Ally was a bully. That she would use her powers of manipulation to get what she wanted from the other kids and from the regular teachers. This is when they moved her to special education. Meanwhile I’m still here saying she needs mental help and services and I am still met with she is just developmentally delayed and at the most she may have ADHD.

Even in the special education room she continues to struggle and to have issues. The meltdowns get worse. I get phone calls everyday about her behaviors and her meltdowns.  She becomes a flight risks and runs out of the room when it becomes overwhelming. I can’t even describe to you the feeling that you get in the pit of your stomach each time the phone rings. The churning and burning, the sinking feeling that your tethering on a cliff and there is no one there to throw you a life line.  To be talking to anyone that will listen and then no one does anything to help. It quite exhausting and demoralizing. I spent many nights crying, wondering and hoping things would get better. But they never did they only got worse.

Being a military family and moving every 3 years brings about an extreme about of stress. And that stress of an overseas move broke my daughter. Second grade is now known as the year of hell. Where shit really did hit the fan. She produced nuclear meltdowns, multiple tantrums where she threw chairs at students and cussed out teachers. She even left school and made it half way home before they caught up to her. They had the nerve to tell me it was still ADHD and we need to try medications. Even though I kept saying NO it’s something else.

Needless to say I gave it a shot. We tried our first ADHD medication and the DR suggested a non-stimulant route, we made it 2 weeks before I got the call that Ally was with the principle and I needed to pick her up immediately. She was out of control; bull in a china shop mad and nothing would calm her down. Her psychiatrist had an emergency consult and say we should try a stimulant. Again even though I knew that wasn’t what she needed, I agree. I placed my trust in him blindly and for that I am sorry.  Ali got worse. Her mood disorder came out full swing.

That’s what sent her into her first bipolar spiral. She became the irritable, angry emotional mess. She started not sleeping. Screaming that she hated school and me, that I was the worse mother ever.  She became the tasmanian devil and she broke whatever she wanted. She ruled our family life. We became hermits and never went anywhere because we never knew how Ally would react. Finally after living in hell the Doctor saw the light and diagnosed her with Mood Disorder NOS. She was started on Abilify and slowly started to get better.  Ally was never easy but she was manageable.

Then 3^rd grade started and school got to be hard again. She started growing. We had to keep upping her dose and soon Abilify stopped working. And her second bipolar spiral appeared. Ali was back to not sleeping, waking up at 4am and roaming the house. She would become hyper focused on certain things like birds and coconuts and wouldn’t want to do anything else unless it revolved around this.  It got to the point where she would run out at 4am to go hunting for coconuts or trying to trap birds. God forbid we said no, instant rage. But with that came a new scary phenomenon wanting to DIE.  The Dr didn’t seem overly concerned said it was probably medication related and switched her to Risperdal. Even with the new medication it seemed to no impact on her at all.

In fact she got worse. Her moods became so unstable that she would cycle multiple times a day. Super tired and irritable when she woke up, happy for breakfast, then on the walk to school back to angry and already taking about how she was going to throw fits so she wouldn’t have to work. She started hitting her brother. Calling him stupid. More talks about how she wanted to Die and even contemplated jumping off a parking structure.

That was my breaking point I had enough. I told her Dr that if he didn’t do something my daughter was going to have to be hospitalized. I just couldn’t do it anymore. We weren’t sleeping or eating. Ally wasn’t living, she was just existing. I wanted her to get better. I wanted a mood stabilizer for her, so she could be happy instead of this emotional monster.  And he finally said YES. She was started on Lithium about 3 weeks ago.

Being on Lithium as a young child isn’t always the right choice for everyone but for us was the best choice.  Ally wasn’t able to comprehend why she needed to get her blood levels checked every week. But she is able to say that she is feeling better. I see glimpse of the old her ever now and then. I only hope as her levels stabilize so will her rages, anger and irritability. Her moods for the most part aren’t cycling as drastically as they were. And I finally feel like I can take a breath. This last 3 months have been so difficult that I admit social retreat. I am no longer the happy go lucky free spirited mother I used to be. I am the one on guard that battles back the dragon of the disease that threatens to control my daughter and our lives.

A little bit about Asperger Syndrome Disorder

     Last post I talked about Marc being diagnosed Asperger syndrome disorder (ASD) and today I want to talk more in depth about what exactly it is. As I said before it is on the autism spectrum. It is considered to be the highest functioning kind.  Most children that have this type either get diagnosed at about the age of 5 or 6 (when the child enter kindergarten) or it goes undiagnosed until teenage or even adulthood. The reasoning for the under diagnosis is in this type of autism the language developmental is normal. These children are often very bright and learn at a very fast rate and ahead of their peers. However the two core features that are present are social and communication deficits and fixed interests and repetitive behaviors.

     The social communication deficits seen in ASD are a lack of eye contact, lack of normal back and forth conversation, trouble reading facial expressions and body language, and trouble maintaining relationships. Fixed interest and repetitive behaviors can include repetitive use of objects or phrases. Such as they always have to use a certain plate to eat breakfast, one for lunch and another for dinner. Or the child loves to line up his cars; he has to keep his room tidy. An example of the repetitive phrases could be off their favorite cartoons “ Hey Squidward” or my sons favorite right now “Twerk this and twerk that”. These children are also highly addicted to schedules and routines. They like to know when they are going to be doing something and get highly stressed if an activity occurs outside of its scheduled time. And will often have meltdowns when changes to their routines occur.  Persons with ASD also tend to higher sensory processing, which can cause either an indifference or excessive interest to their environments.

     Children with ASD sometimes have speech that lacks rhythm has a weird inflection, lack of rhythm, or have a monotone pitch. They often have an absence of skill to control the volume of their voice to match their environments. Often times their parents remind them to lower their voices because they don’t realize how loud they are talking. This is usually a problem at a library or at church.

     Unlike other forms of autism where the child seems to withdraw from the rest of the world children with Asperger do want to be included but are isolated because of poor social skills and their narrow interest. As I have discussed above these children then to have fixed interests and amass extreme knowledge on these subjects. They become mini professors and then become your teachers to the point where they don’t let you get in a word edgewise.  A lot of times these children will tell you that they don’t have anything in common with kids there age because they are not on “their level” but have “lots in common with adults because mentally they are their equals.” Well excuse me!

Some children with ASD are very active as kids.  They have lots of energy but may not meet all the motor skills milestones as early as other kids.  These normal motor skills are peddling a bike, catching a ball, or climbing playground equipment. Sometimes they can have an awkward walk or run. Marc still has trouble walking and is quite clumsy. We joke about his two left feet.

     A lot of times children with ASD will develop problems with anxiety or depression. This can come from the break from their routines. A challenging time for them such puberty, a parental divorce, a pet dying or any other traumatic event to the child. Other common co-occurring diagnoses are attention deficit disorder (ADHD), and obsessive-compulsive disorder (OCD).  Treatment for this co-occurring diagnose is the same. Your physician should still approach the child with therapy and medication if necessary. Please see your doctor if your child is exhibiting symptoms of these other disorders.

     This is a little bit about what ASD is about and if you suspect your child may have the first step is making an appointment with your pediatrician.  After that initial step they should then refer you for a comprehensive evaluation. The team will consist of a psychiatrist, psychologist, neurologist, speech therapist, and occupational therapist, and any additional professionals who would be helpful in diagnosis your child. The testing process is lengthy. The younger your child is the longer the process will be. But basically they test your child neurologic, cognitive, language, IQ, psychomotor function, verbal and nonverbal strengths and weakness, styles of learning and independent living skills. After they gather all the data the team meets and decides what diagnosis best fits your child.

     Asperger disorder or autism does not have a cure. However there are various treatments out there that work for these unique children. As I continue to preach children are uniquely made and these therapies should be tailored to them.  An therapeutic treatment plan should build on the child’s interest, should stick to a expected schedule, teach good social skills, use simple steps, absorb the child’s attention in organized activities and provided reinforcement of wanted behavior. I am a firm believer in therapy, therapy for the child, for the parents and for the family.

     Since my son’s Marc’s diagnosis I have been hitting the books and the Internet. What I didn’t see before now I see. I have been a little more forgiving when it comes to his interest.  For him he is hyper focused on vine videos, and SIMS. He has a photographic memory and can recite to me almost textbook like the ins and outs of the cardiovascular system. He is in 7^th grade but doing 11^th grade math. Talk about a brainiac! But he relates poorly to kids his age and has a hard time telling when people are joking with him. He tends to reveal, to openly, personal information about me that I normally wouldn’t want people to know. We live on an island with some of the most beautiful beaches but he refuses to go because he hates the feeling of being dirty. We are working through all of this. The diagnosis, the treatment and the therapy, but just like everything else we will get through this like we do everything else like a family.

                                                                                                                      

Preventing Suicide

 POWWWW!!!!! That’s life hitting you with a right hook that you never saw coming. This is what my husband and I felt when we received our son Marc’s diagnosis of Aspergers just over two weeks ago. Aspergers is a form of Autism that is considered to be on the high-functioning end of the spectrum. Initially we started pursuing psychiatric help for him due to  symptoms of depression. After moving to Hawaii and starting middle school, he had some trouble with bullying. Then he wasn't making friends at school, was having problems sleeping, and was socially isolating himself. He even expressed to me that he was having thoughts about suicide. Now that is another punch to the gut! Not to mention, a tough thing for any parent to hear. But it is important that you LISTEN to your child so that you can get them help. 

    When your child is suicidal the most important thing is their safety. You’re also going to have to ask them some tough questions. First ask them how they plan to commit suicide. That way you have a clear understanding of how they plan to do it and then you can take away their means. Then ask how long they have been feeling this way. A lot of the time we are busy attending to other members of our families (for me that’s my bipolar child) that we lose focus on the other children. 

Next ask if they have hurt themselves. This can be tricky because at this age they can hurt themselves in any number of ways through cutting, pinching skin, severely scratching skin, burning skin, punching skin or hitting yourself or banging your head. The are also smart, as they can hide these behaviors in places where clothes cover. If they say they do hurt themselves ask them to show you where. Take note and see how fresh the wounds are. This can tell you how long the behavior has been going on.

 Observe their moods and behaviors. Listen to what they have to say. If they are telling you that they are having a hard time and they need help, they are. It’s not a teenager thing, or a young child thing, and they will grow out of it. They wont. It’s a chemical imbalance in their mind and they need help. 

     Once Marc expressed this to me I took away his means. He told me he thought about asphyxiating himself with a belt. So I took away all his belts and had a long chat with him. In this chat we discussed all of the above. And after our long chat he felt better and so did I. But if I felt that he was unstable as in he was self harming, he had been feeling depressed, and he had a plan as was ready to carry it out, I would have taken him on the spot to the emergency room to be admitted. This is what should happen IMMEDIATELY if your child has suicidal thoughts, a plan, and the means to carry out the plan. Then it’s “Marc get into the car.  We are off to see the Dr.”

     Now we did see the Dr. When we had the discussion it was at 8pm at night. But the very next day we had a same day appointment with his pediatrician, who in turn recommended an amazing child psychologist and psychiatrist. After all the assessments and evaluations we did not receive a depression diagnosis but we received the Aspergers one - which as a parent isn't something that I was wanting to hear. Realizing that your child has a disorder not a diagnosis was tough. But it is something that we are learning to come to terms with. Once Marc got into therapy, I am happy to report a lot of his suicidal thoughts has diminished and he is back to his happy-go-lucky self. But this doesn't mean I have dropped my guard. I still routinely ask how he is doing and how he is feeling. I still ask if he thinks about hurting himself or others. I still observe his sleeping patterns, his mood and behaviors. I do all of this because thats my job, because I am his mom. Most importantly I do it out of love.

Decompensation

     Lately its been quiet difficult in our household. For the last 2 months or so Ally has been on the road of what I like to call a decompensation.  When you have a mental illness it is inevitable that you are going to have set backs. Set backs usually consists of problems with a medication dose, growth spurts that cause hormonal changes and fluctuations that affect a person’s mood and behaviors, as well as school or home life becomes difficult for the person and the stress causes a set back. 

     Usually if an adult is stable on medication these fluctuations don't cause to much duress and they can handle it by talking to their family, friends or therapist for advice. But in a child that is a whole different story. Their little bodies are still growing and hormonal changes are happening on a daily basis. A medication dose that worked for them 6 months ago may not be what they need now. Also each child is uniquely made, no two children are alike not even twins. Medication studies and trials have shown that even identical twins react differently to the same drug even though they were diagnosed with the same mental illness. On that note a child can be expected to respond a certain way to a medication but they maybe one of the 10% that responds negatively to it. This is the reason why it is so important to read the patient educational handouts that come with the medication the pharmacy send you home with.

    On that note in order for children to be on a correct dose it is extremely important for parents to observe their moods and behaviors. The best way I have found for this to work is to keep a journal. If your child is in a decompensation, like Ally is I find it more beneficial to do this on a daily basis. When it is really bad I journal her mood and behaviors in the morning, afternoons and before she goes to bed. This is helpful for two reasons, a lot of the time when you go to see their psychiatrist you end up forgetting a lot of valuable and useful information and also it is very therapeutic for you as their parent. And when it gets really really REALLY bad I video tape it, because sometimes I need them to be able to see what I am describing. If I say Ally has been raging and saying she wants to die for over 30 min, it much more believable if I caught that on tape.

    Don’t change the dose yourself. We are not Doctors. Although it is tempting to up the dose before your next visit this isn't the wisest idea.  7 years ago when I went to nursing school we learned that in the elderly population and in children “we always go low and start slow.” Which basically means that doctors like to start at the lowest possible dose and then slowly add to it. The rationale behind this again is because their bodies are growing and these mental health drugs were created for adults and are being used in pediatrics. So there aren't to many studies on how growth and development is affected by taking these medications.  I cant tell you how many of my friends have confided in me that they don't wait for their doctors to "UP" their child’s ADHD medications they just dot it themselves and little Johnny is no worse for the wear. And inwardly I cringe because you have no idea how it can negatively affect your child. These drugs are processed through the liver and excreted through the kidneys, you don't want to damage either one of these vital organs. Additionally these drugs can either have an activating effect on the neurotransmitters or a deactivating effects. If the dose is too high it can cause your child to be more unstable and unable to focus, not the behavior you where looking for. Always consult with your physician before making any changes.

   Ally setback started with a growth spurt which in turn caused her stability on her medication to go out the window. She started to have problems with her attention and focus at school. Her mood stability also took a dive. Ally’s mood disorder is consider to be they type that is ultra rapid in that she cycles through multiple different mood several times a day. Normally she was able to keep it together at school but with her decompensation it started to affect her there as well. She is lucky that she is followed by school behavioral health so her psychiatrist, social worker, counselor, and behavioral therapist all talk to each other.  After upping her antipsychotic medication it was decided that she could benefit from the use of a mood stabilizer. So we are now on that path. It is a slow process. We are only on week two of lithium. As much as I would love to wave my magic wand and have the Ally that is a happy focused little girl I know the wisdom of taking your time with adjustment. For now we are strapped into our seats for the emotional roller coaster ride that is finding the right medication cocktail that will work for her. Ally being uniquely made and responding differently to medications only time will tell what will be the right ones for her.

An Explosive Child

     I am going to introduce you to a term that you may or may not have heard its called an explosive child. What is an explosive child you ask? Well its a child that has meltdowns, temper tantrums, screaming fits, rages, and emotional outburst that can occur at a drop of a hat. These meltdowns can happen anywhere and everywhere. They happen at home, at school, at the park, at the mall, at the grocery story, on a plane, on a train, well you get the picture.

     These meltdowns can hurt the child because they thrown themselves on the floor, hit themselves on their heads or hurt others. Often times the child will lash out at their parents, brothers or sisters in a rage because they have trouble processing their emotions. The best way I can describe it, is that they are having an emotional seizure. They are experiencing such an overwhelming sense of emotions that they cannot contain the sadness, anger, and overwhelming frustration that they lash out. As you can imagine it is quite traumatizing to both the child, their siblings and their parents.

  The explosive child is usually sorry after their meltdown. As is the case with my daughter Ally. She apologizes, usually with big hugs for me. When I ask her how does it feel when you get these rages? She says "I can't control it, I can't stop it Mom, it comes out of me and I just say mean and ugly words and I don't mean it." So what is a parent to do?

 #1.  Stay calm is key. As much as I feel like I want to rage and scream sometimes at the mood disorder that has affected my child, this will not help the situation. Staying calm and control of my emotions in the meltdown is essential. By modeling the correct behavior for her I am helping teach Ally to do the same.

#2.  Next is don't give in. Now there is some leeway there. For kids that have mood disorders there are times where I do have to reward or bride. Lets say I go to the grocery store and I need her to behave to listen and stay with me. For Ally she likes to wander and she is a flight risk. So if she stays by my side without leaving for the 45 min trip she is rewarded with a candy bar at the checkout. Or sometimes if I am at the Dr office and I need her to cooperate with a blood draw I will bribe her with a happy meal. Since the blood draw is a traumatic and unwanted activity.

Now here is an example where I won't give in. Ally lost a kitty hand sanitizer holder I got her from bath and body works that cost me seven dollars. She wanted me to replace it for an even more expensive one. I said no. She threw an EPIC meltdown. Complete with a "I want to Die" and "Mommy doesn't love me" for the mall full of Labor day shoppers to hear. I calmly told her no, handed my purchase over to my husband and took her to the car. Didn't give in to her wishes and I kept calm and in control which is hard to do when your in a mall full of people staring at you. And most importantly I kept Ally safe from herself.

#3.  Praise good behavior. Whenever I see Ally doing something I like I make a huge deal about it. For example when she shares with her younger brother Andy. Or when she takes out her homework without me asking. I will say " Ally I like the way you shared your cookies with your brother." Or " I like how you used your words to tell me how you felt instead of crying."

#4. Create a Reward system. I am a huge believer in reward charts. I just will google or go on Pinterest and find a rewards chart you like and give a star for good behavior. Have your child decide on a reasonable reward for filling up the chart. Ally likes shopping dates with mom, or getting a pedicure. Make sure to find lots of opportunities to catch your child being good. Trust me it makes a huge difference in their self esteem. Here is a link to Pinterest for some examples on rewards charts http://tinyurl.com/lplzpwc

#5.  Lastly learn your child's triggers and avoid them. For Ally, their are triggers that can be avoided and some that can't.  She has problems with abrupt transitions. So I have to give her some warning before we are going to stop whatever she is doing to do another activity. She also dislikes loud noises, so movie theaters are out of the question unless we have earplugs. Another thing is homework, she needs to have it broken up. So she does one right after she gets home from school, then another one hour later, then the other after dinner.  Taking time to recognize the triggers and the child's reaction can help lesson the explosion.

  This is what I have learned has worked for us. I am continuing to learn what works and what doesn't work for Ally. Even though she is an explosive child that doesn't define her completely. She is an amazing artist. She can play goalie for her soccer team fantastically. And most importantly she is quite loving and gives the best hugs. Always remember our children are uniquely ours and we are doing the best we can.  To all my fellow parents out there with explosive children is there a way you deal with your children? Anything you would add to my list?

Is it ADHD or is it something else?

     Don't you wish all children came with an instruction manual? At the vary least a troubleshooting guide to go to when problems arise? Well when you are a parent of a child, or in my case children, with mental illnesses that would be extremely helpful. I have a Bipolar child who is 8 years old but according to the medical system cannot be diagnosed until she is of age, usually the late teen years. So the official label is Mood Disorder not other wised described. The diagnosis at this point doesn't really matter because the treatment approach is the same. Usually it involves medication in the form of a mood stabilizer, a antipsychotic, sometimes a antidepressant and therapy. Lots and lots of therapy, cognitive behavioral therapy for the child as well as for the family.

     Normally if you are lucky the medication and therapy work and you don't have to do to much leg work. Or if you child is unique they will require some trail and error. Unfortunate for my daughter she doesn't respond to medication like you would normally expect. Initially when she was a small child before we learned she has a mood disorder we thought she just had attention deficit hyperactivity disorder (ADHD). It wasn't until we tried her on ADHD medication that we learned of her mood disorder.

     A little fact about mood disorders they co-occur with ADHD or they look like ADHD.  The common signs of them are: impulsively, inattention, hyperactivity, physical energy, frequent behavioral and emotional changes, learning problems, and motor restlessness (they can't sit still). What is different in mood disorders is these children typically have angry outburst and temper tantrums that seem to last for 30 minutes to hours. Also children with mood disorders seems to be triggered into angry outburst usually by limit setting and conflict with authority figures where as ADHD children tend to be overly stimulated. Another common sign in mood disorder is irritability, especially upon waking. Also another key is their moods, ADHD children are generally very pleasant and their moods for the most part remain the same. On the other hand the mood disorder children have a mood that is ever changing they can be happy one second, sad the next, mad, then back to happy again.

     If you suspect that your child has ADHD or that something is off it is best to trust your intuition. There are a few ways you can seek out help and advice. You can seek out the advice of your child's pediatrician. Ask for a free evaluation at your child school. And if your child is under 3 you can also request a evaluation at your local school district, where they will screen for their early childhood intervention if needed. There are many resources at your disposal and don't be afraid to use them. But remember that every child is uniquely made and they are not all one size fits all. There will be trails and you will have to adapt but that is part of this journey. This is what our parenting journey is about and writing our own instruction manual.