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Friday, May 4, 2012

Crisis Years

When Benjamin was two years old, I noticed that he was blinking repeatedly and in sort of a weird way. I kept track of it for a while and then brought it to the attention of our pediatrician. He told me what countless doctors since then have told me about a host of things I asked them about: Don't worry, he's just a boy. Boys have tics sometimes and he'll grow out of it. I'm sure he was trying to comfort me, but instead I felt like he was telling my I was a neurotic mom who was making things up to worry about. I just watched Ben and waited. I knew in my Mommy Heart that this was more than just a meaningless tic that would eventually disappear. 
 Over the years, Ben's tics came and went, changed in type and severity, waxed and waned. I knew what was going on, but doctors were unwilling to label Ben with any type of diagnosis until he was older. When Benjamin was five years old, he began having tantrums that were so severe that Alex and I felt we couldn't handle them on our own anymore. Ben's tantrums were very long and very aggressive. We tried everything we could think of to help him. We tried behavior modification techniques, reward charts, time outs, time alone to calm down, being loving, being name it, we tried it. Nothing was helping and the tantrums were getting worse and affecting the whole family.

It takes a lot for me to feel like I have to seek help, so this was a big big thing. I started with our pediatrician. Who referred me to a psychologist. Who wanted to see King-of-Separation-Anxiety-Five-Year-Old Ben by himself without me in the room. Good luck with that, lady. After agreeing to see Ben in the company of his Mommy, the psychologist recommended seeing a neurologist because she couldn't make a diagnosis. However, she felt Ben had Tourette's Syndrome and ADHD, among other things. So I started the next chapter of our adventure, the hunt for a neurologist. When I found one, he agreed that Ben definitely had a tic disorder, and although he didn't want to label it Tourette's at that point, he said that Ben did in fact meet all the criteria for a Tourette's diagnosis. He also said Ben had ADHD and a mood disorder. We started medication trials. Some meds put Ben to sleep. Some made him super aggressive. Some made him have night terrors. Some gave him a rash. Some made him sleep walk. Some made him irritable. Nothing worked. Ben was also getting counseling, physical therapy, and occupational therapy during this time. We were frantically trying to find a way to help Ben calm down and have a happier, more peaceful family. But the tantrums just kept coming.

About this time, Jonah started having changes in behavior. He was so sad, for no reason. He would just cry and cry about nothing. He had tantrums. He was irritable and moody. I brought this up with our neurologist, who, after checking him out, said Jonah also had ADHD and a mood disorder. Jonah was also receiving counseling, PT, and OT every week. Nothing was helping us understand how to deal with what was going on with our boys. Alex and I got counseling to figure out the best way to handle our challenging boys. We were scrambling. And the tantrums just kept coming. We started trying different medications for Jonah. Sometimes a stimulant medication used to treat ADHD can make tics more prevalent, and this is what happened with Jonah. His tics became more pronounced as we tried meds for ADHD. His tics came and went, changed in type and severity also. He met the criteria for a Tourette's diagnosis just like his twin brother.

 Maddeningly, but also thankfully, Jonah and Ben were able to hold themselves together in situations away from home. With grandparents or at school or church, the boys were able to hold their anger inside and not explode. Until they got home. They were able to function in settings apart from home pretty well, which made it even more difficult for Alex and I to convince the outside world of the painful struggles we were having at home. We felt like we were going crazy! It was hard to know where to go for help, and I felt like I was constantly chasing a new lead only to have it disappear before my eyes. I didn't know what was wrong with my boys, but I knew this was not in the realm of "normal" and that we needed help desperately. It was a confusing, very frustrating time. And ultimately, I was searching everywhere I could think of to find help for our boys who were obviously struggling in a way we could not fix.
 I researched as much as I could online and through books. I found a doctor an hour and a half away who specialized in childhood onset Bipolar Disorder. I made an appointment with her for the boys, read her book about the disorder, and researched her and Bipolar Disorder as much as I could. When we saw the doctor, she tried to comfort us by making light of our situation. She kept saying at every visit "Don't worry so much. Just go home and enjoy your beautiful boys. They're doing great!!" But she didn't come home with us and see the fallout we experienced on a daily basis. She had the boys go through neuropsychological testing with her team to find out exactly what was going on with them. They were diagnosed with Bipolar Disorder, ADHD, Dysgraphia, tic disorder, and anxiety. The doctor put the boys on a medicine that was very mild and had no side effects to try and stabilize their moods. It helped a little, and we were grateful not to have the terrible side effects of other meds we had tried. We did this routine for a while, although we didn't feel like the doctor was really helping the boys. I didn't know where else to turn. We had done everything I could think of and I didn't know what else to try. But every day, I had hope. Hope that things would change. Hope that we would find out what was going on in our little boys' brains, hope that life would get better for them. 

Eventually, Alex and I agreed we had to try something or someone else because this Bipolar doctor was just not seeing the gravity of the problem, and wasn't treating our family accordingly. We were stuck, stagnant, and our family was falling apart more and more because of the boys' mood and behavior problems. I finally found a pediatric psychiatrist. I was pregnant with our fourth baby when I met him for the first time, and I remember I was wearing a light orange shirt that day. I remember I told him about our boys, the struggles we had been through, the long journey of medications and doctors that was leading nowhere, our frustration and desperation. And through my tears I pleaded for him to help us, because, I said, he was our one last hope. 

Dr. S. turned out to be the light at the end of the tunnel for us. He believed me when I told him about the boys' behavior and mood problems. Their anxiety, OCD symptoms, tics, rages. He did not downplay our crises. He knew what to do. He knew we needed to treat one diagnosis at a time until we had it under control, then work on the next issue. We tried a couple different meds until we found one that addressed the boys moods a little bit more effectively than the previous medication had. Then we set to work on finding a medication to help with the ADHD. We found one that worked after some trial and error. The boys were still struggling but life was a small bit more manageable. They still got counseling, PT, and OT. They did social skills groups, went to the chiropractor for various treatments I had learned might help them. They took a variety of vitamins. We had tried going gluten free but since it didn't significantly change the problem behaviors the boys were having, we decided to just try and keep them on the healthy, well-rounded diet that they had always had, while limiting sugar and dyes. We still tried everything we could think of to help our little boys. Meds were our last resort, but we were at the end of our rope and needed medical support in order to deal with the magnitude of what was happening in our family.

During the summer of 2011, Dr. S. wanted to take the boys off their mood stabilizer to figure out if their symptoms were due to ADHD or Bipolar. We did this, and it was the worst time of our lives. I can't describe the war zone we endured that summer. Ben was out of control with rages that lasted hours every single day. Jonah was emotional, depressed, and angry all the time. Ben was constantly in physical battle with someone in the house. He destroyed things, he hurt people, he hurt himself in the process. At one point the psychiatrist mentioned to me that there was the option of hospitalizing Ben if necessary, if things were too out of control for Alex and me to handle at home. But I couldn't even imagine doing that. As bad as things were with Ben, I did not even want to think about putting him somewhere where I couldn't take care of him. I didn't keep a journal during this time because I didn't want to remember the specifics of these months. This is not who Ben and Jonah really are, these were symptoms of their diagnoses. I did not tell most people about the severity of chaos in our home because I didn't want them to judge the boys based on their actions, that they were not in control of. The boys were sick. Their brains did not work the way they were supposed to. They were suffering because of their special needs. We seemed to be always in crisis. 

That summer, Jonah and Ben's negative behaviors leaked out of the security of our house and into the neighborhood. They would start to get angry with friends who lived on our block, and it would escalate to the point that they were having rages outside. We had been able to keep the boys inside during rages until that point, but now their special needs were seeping out into the world and affecting not just our family, but our friends too. I started having to explain to our neighbors and friends what was going on with the boys, their diagnoses, and what we were dealing with. I had to apologize to countless parents for the way my sons treated their children. I had to reassure them that my boys were not dangerous and mean, but suffering with difficult symptoms that we had been desperately trying to get under control for years. I had to let them know that Alex and I were aware of what was happening, and hope that they would understand the depth of the crisis we were in. And bless their souls, most people did understand. They did not make their children stay away from ours, although I would have understood had that been their decision. Our friends still let their kids play at our house, play with our boys who had special needs. And I stayed vigilant as ever, trying to block the boys' challenges from permanently affecting their lives outside of our family.

In February 2012, we had to switch psychiatrists. I found one that several people had recommended, and he agreed to start seeing the boys. He changed their medications a little bit and added a new mood stabilizer. It seems to be a miracle. We haven't had a rage for about 2 1/2 months!!! The boys' anxiety has decreased dramatically. Jonah goes to school most days without weeping beforehand. Ben gets angry about things that people normally get angry about now, and his anger is proportionate to the situation. He's not out-of-control angry anymore, he's just normal-angry. He doesn't lash out physically anymore. He doesn't destroy the house. He doesn't try to hurt people. He doesn't talk about killing himself. Jonah doesn't cry for no reason all the time. He doesn't spend the day sad and irritable. He even says once in a while that he had a great day and that he's HAPPY!! 

It has taken me months to realize that this positive change may be here to stay. We've had other honeymoon periods where an intervention seemed to be working but then stopped and life went back to crisis mode. So at first I couldn't let myself believe that we were not going to revert to crisis at any moment. I lived in constant fear of the boys having a rage, letting it bubble up out of control and taking us all by surprise. I watched vigilantly as always for any sign that I would need to physically intervene in a fight between my children, so that one boy wouldn't get beaten to a pulp by his big brother. I watched the boys to make sure that if a dish was thrown, or a toy vacuum, or a vase, that I could dodge it. But nothing was thrown. No fights erupted that required my intervention. We haven't lived like this, without crisis, for four years. Since Jonah and Ben were 5 years old. They're almost 10 now. 

Jonah and Ben have never ever been good sleepers. But there was a time when not only would Ben and Jonah wake for the day between 3 and 4 a.m., but they would also wake in a rage. Our first wakeful moments of each day would be one or both of our boys in full raging mode, wreaking havoc and screaming at the top of their lungs...about nothing! We just couldn't figure out what was happening with our kids. But since about 2 months ago, we don't have any of that. Sure, the boys get grumpy sometimes. Sometimes they fight with their siblings or are stubborn with Alex or me. Sometimes they feel sad or angry. But it's not the extremes that we dealt with for so many years. Now it's just what I always thought "normal" families had to deal with, "normal" issues. Now I feel guilty sometimes for how easy it is to be with my kids. I've stopped feeling like I have Post Traumatic Stress Disorder, and I trust that this incredible change in the boys is here to stay. At least for the foreseeable future. And I'll take it. We have lived so many countless moments in pure crisis, I am tremendously grateful for this peaceful time in our family. I trust my boys when they are out with friends in the neighborhood, riding bikes or playing ball. I trust they will not yell swear words at their friends or act in other terrible ways. I trust the boys will not destroy everything in the path of their hurricane anger. I'm almost willing to patch up all the holes in the walls they created last summer with their anger. 

The boys still have "special needs". That hasn't changed. The way they take in the world and process it all, the way they lose focus, the way they need 504 Plans at school, the way they need their medications in order to stay stable, the way they still have anxiety about leaving Mom and Dad, the way they can't focus sometimes, the way they still need their weekly therapies, the way they require patience patience patience...but a piece of their brains is working a little bit better because of all the interventions we've done. We have a lot of challenges every day to slog through, but the outrageous, irrational anger has evaporated for the most part. 

Now we see in Benjamin and Jonah the boys we always knew they were. Instead of catching tiny glimpses here and there of these amazing characters, and spending most of life with the boys off in some dark angry world, we are seeing them emerge into the sunlight of peace. They smile, they love life again, they are so kind and creative and loving. And they are so grateful for Alex and my love. Even through the worst rages, I always knew the boys were not trying to make me go away, they just didn't have the capacity to control themselves. They desperately wanted and needed their Mommy even when they pushed me away with every word, look, and action. But from the time my sons were born, I was there. I was not going to leave them in any way, I would always show up and be there for them. No matter what black and blue marks they gave me along the way. And all that love and diligence and searching for help is starting to pay off. When they both spontaneously thank me at night for being their mom, and for loving them, I know all the years of crisis may be coming to an end. At least for this moment. And I will take whatever I can get and enjoy each little taste of who my children really are, in spite of their special needs. 


Lori said...

Carrie, your writing is just amazing! I am so glad that Jonah and Ben are doing so much better right now. Kudos to you and Alex for ALL that you have done to make that possible!

Sharron said...

It's hard to respond to this because of how deep and emotional it is, but Carrie, what you and Alex have been through with your amazing children is something we can all use to put our lives in perspective. You are both unbelievably caring and dedicated parents, and your children and friends are lucky to have you in their lives!

Sharla Steever said...

God Bless you and your family, Carrie. Your experience is going to bless others in ways you will never know because you have shared it. So glad and thankful that things are changing for the better now.
Love to all of you...