Monday, April 23, 2018

Part 8: Stigma and Upheaval

Tzviel's family never met or interacted with the school guidance counselor, despite several months of working closely with the staff at the school to help his anxiety. It was only once the topic of medication came up, that a meeting was called. Tzviel's mother tried explaining the 3 years of history of Tzviel's anxiety, about his sister's special heart and the current situation. The guidance counselor's suggestions were that his family was "doing too much", didn't really know what was wrong with Tzviel and that they needed parenting classes.

Despite her lack of qualifications, she pushed strongly to remove Tzviel from any medications. The guidance counselor immediately notified the principal after the meeting, that Tzviel's mother was a crazy obsessive mother who was self medicating her child and likely importing medication from abroad. (Laugh. It's the only way to process this bit. Much easier than crying- trust me.)

When Tzviel's mother met with the principal, she was interrogated about how she was obtaining medications and who was overseeing to Tzviel's care. Nothing productive came out of that meeting, except for Tzviel's mother demanding that the guidance counselor not be involved whatsoever.

Tzviel had started his new medication. For eight blissful days, Tzviel breathed deeply like he hadn't been able to for three years. He smiled, he interacted, he functioned. His parents got to see the version of Tzviel that they had been missing for so long.

If only things could have stayed that way. Adverse effects came on and made Tzviel's anxiety come back with a fury. Raising doses only made things worse and sent Tzviel into a tailspin.

When a classmate called Tzviel crazy and weird and pushed him, Tzviel went into a serious anxiety attack. Tzviel's homeroom teacher came to calm him, but the guidance counselor kept interrupting. The guidance counselor called and Tzviel's mother raced to school. His mother pulled up to the school to see Tzviel running in the rain being chased by his teacher, the guidance counselor, the cleaner and the guard. She watched as Tzviel scaled the fence, desperate to get away. Upon seeing his mother, Tzviel breathed and agreed to come to the car to calm down. The guidance counselor was adamant that this was not an anxiety attack and couldn't understand why Tzviel had disassociated and didn't respond to her.

Two days later an email was sent from the school, demanding an official letter that Tzviel was not a danger to himself or to others. Because an 8 year old boy climbed a fence.

Tzviel's family realized that until Tzviel was stable, the school was ill-equipped to help him and would only exacerbate the situation. All of Tzviel's doctors were consulted and the decision was made to homeschool-homecare for Tzviel until he was stable.

Tzviel's parents sat him down and explained that his anxiety was just like a very bad virus. Without giving his body and mind some time to rest, his body would work too hard and couldn't get better. His anxiety had to be taken care of and when he was well, they would slowly start school again. Tzviel breathed deeply and whispered, "Thank you."

Tzviel went to bed that first night, calmly and without any stress. He fell to sleep instantly and slept for 14 hours. The stress and exhaustion of the situation had caught up with him. Now he could begin healing. 

Friday, April 13, 2018

Part 7: More Help

Tzviel's mother had spoken in great length to their family doctor and to his therapist. It seemed that despite all the help that Tzviel was getting, the chemical component to his anxiety was still rising.

Tzviel's mother sat him down and said, "Tzviel, your anxiety has been pretty hard for you lately. You've been working so hard for so long to try to control it. There are different kinds of sicknesses. Some of them make us uncomfortable, but they can go away on their own. Like a cold. You sneeze for a bunch of days, feel pretty bad, but afterwards, it goes away. Sometimes that cold doesn't go away and causes a cough. We bring you the humidifier, rub some Vicks on your chest and work a bit harder to get you better. And some times that cough gets into your chest and causes an infection like bronchitis. In that case, we need medication to clear out the infection. You would still need the humidifier and the Vicks to help you get better, but without the medication, your body can't feel well."

"We can go to a special doctor and talk about your anxiety. He can give you a medication that will take your anxiety down, so that you can work on it again and control it better. All of our doctors think it's a good idea and will help you start to enjoy school again and stop your stomach problems. What do you think?"

Tzviel looked into his mother's eyes and simply nodded his head and said, "That sounds like a good idea."

When Tzviel met his psychiatrist, he liked him right away. He spoke softly and asked him all about himself, his family and friends. They spoke about sports and movies and Tzviel felt himself relaxing.

When his psychiatrist finally said, "So, Tzviel, can you tell me why you are here?" Tzviel answered, "I really need help with my anxiety." His psychiatrist said, "Wow, that's a great thing to hear you say. Who should talk to me about your anxiety? You or your mother?" "My mother," Tzviel answered.

While Tzviel's mother started talking about his little sister's heart and about all the hospital stays, Tzviel felt himself feel bad. He started moving his body around, and felt himself sink to the floor and hide under the desk. He ran to the other side of the room, and crouched into a small space between a chair and the wall.

Tzviel's psychiatrist said, "Got it."

(To be continued)

Sunday, April 8, 2018

Part 6: Frozen in Anxiety

Second grade started in September for Tzviel and he got a new wonderful homeroom teacher. She was kind and greeted the kids with a smile. He liked her very much and was able to warm up to her. There were many other teachers introduced. Some were nice and warm. Others walked into the classroom, slamming books and talking sternly. Tzviel started to feel very on edge with each subject change.

Two weeks into the school year, Tzviel's incredible homeroom teacher asked to speak with Tzviel's mother. The year had only just begun, and she had seen little windows into Tzviel's wonderful personality, but she had concerns. Tzviel seemed to sit frozen in class, with his hands tight in fists. After a long conversation explaining Tzviel's anxiety, his mother consulted with his CBT therapist, who provided the teacher with a list of techniques that could help "ground" Tzviel when she noticed his anxiety. They stuffed his pockets with stress balls to squeeze, lined the bottom of his desk with velcro for him to touch, made up code words so he could go to the hallway and do some jumping jacks and a bunch of other things.

Tzviel appreciated that his teacher understood him and knew how to help him. With her, he was able to relax a little bit. But all other teachers made him feel uneasy. Tzviel would come home from school exhausted from trying to keep his anxiety under control all day. Each morning was again a battle to go to school, not wanting to have to endure another day. His stomach problems came back even worse and were now causing daily problems.

His parents worked closely with his CBT therapist, utilizing every technique they could. But Tzviel's anxiety kept climbing. When Parent Teacher meetings came around, Tzviel's mother sat down with his homeroom teacher. She said:

"Tzviel is such a bright, sweet boy. You need to know that he is extremely intelligent and has tested into the national gifted project. He is also such a sweet, kind, good heart-ed kid. I've been speaking with all of his other teachers. We all see him completely frozen with his anxiety. As smart as he is, at this point, he isn't learning and we can't teach him."

(To be continued.)

Tuesday, March 27, 2018

Part 5: Learning Tools

By age 7, getting Tzviel out of the car in the morning wasn't possible. His parents would reassure him, coax him and do everything they could. One morning, while parked right outside the school building, during an anxiety attack, Tzviel said, "I want to help myself! How? How do I make my anxiety better?" This smart boy had asked the smartest question. His family turned to his art therapist and family doctor who both highly recommend cognitive behavioral therapy (CBT).

In one of the first few sessions of CBT, Tzviel's therapist took a coke bottle and explained to Tzviel and his parents that the coke bottle was Tzviel. She started to shake it. "This is what happens when we start to feel bad inside. Afraid, scared, anxious. Tzviel, can you guess what is going to happen if I keep shaking it?" With a devilish smile and twinkle in his eye, Tzviel answered, "It will explode!" With that, Tzviel and his family went outside to the garden. Tzviel's therapist explained, "Tzviel, you've been feeling so scared and it's making you feel really bad inside. All that emotion has no where to go." She kept shaking the bottle. "Without slowly releasing the air from this bottle, you know what will happen. It's the same thing with you." With that, she opened the bottle and everyone watched coke spray everywhere.

She took a second coke bottle and started shaking it vigorously. "When our anxiety builds up and up, it feels terrible. I'd like to teach you ways to help your anxiety, so it doesn't explode. I'd like to teach you tools or techniques, so you can start feeling better." With that, she slowly opened the cap of the bottle. Some air came out. She did this a few times. "You see, Tzviel. No explosion."

Tzviel went for a few sessions, where his therapist would give him and his family exercises and techniques to learn. As well, she would ask questions and purposefully trigger anxious responses in Tzviel to get a good grasp for his anxiety. For many sessions after that, just Tzviel's parents went for the sessions. It was clear that Tzviel's separation anxiety had now expanded to a more broad anxiety disorder.

With cognitive behavior therapy, Tzviel's whole family learned how to communicate more effectively, to assess the situation, and learned how to diffuse situations very effectively. Tzviel felt much calmer, knowing that his parents understood his triggers. He felt safe when they knew how to reassure him. He started to feel really good.

(To be continued)

Sunday, March 25, 2018

Part 4: Getting Help

When Tzviel was 5, he had so much trouble with his fears and frustrations. They just felt too much for him. His parents talked to their family doctor about concerns they had with behaviors they were seeing and the things that Tzviel was explaining to them. Art therapy was recommended as a source of an appropriate emotional support. Tzviel would cut out pictures of animals from magazines, draw their habitat around them and then draw a very firm and thick box around them. His deep seeded need for security was clear from every piece of artwork he made with his therapist. Through Tzviel's art, his overwhelming fear received a proper term "Separation Anxiety".

When his baby sister was hospitalized, his artwork transformed to bird's nests being held up by a string, tied to a pole that could never support itself. His thoughts and fears were clear: Tzviel was frightened by the instability of his home. Tzviel learned to express his anxiety more and more. His parents learned to be more tuned in: to understand this wasn't just a 5 year old acting out (as so many people offered in their brilliant opinions) and to learn how to respond better.

His parents slowly began to understand that his sleepless nights were linked to his fear that something would happen to his family in middle of the night and the uncertainty of what he would wake up to. They began to understand that his refusal to get ready in the morning was really his inability to prepare to leave the safety of his home.

As time went on, Tzviel's anxiety grew and grew. Bedtime became unbearable and only with the help of melatonin, would Tzviel eventually fall asleep. Morning routines changed drastically, as Tzviel needed constant support. He had also developed some chronic stomach problems because of his anxiety.

(To be continued)

Thursday, March 22, 2018

Part 3: Tzviel's Perspective

I'd like to tell you our heart story from a different perspective. Tzviel's perspective. 

Once there was a little three year old boy. He was bright, quiet and very funny. He was extremely easy going in most cases, but every now and then, his parents would notice specific situations that would stress him out. Like crowded rooms, or having babysitters. He was quiet around those outside of his family but when alone at home,  he would say some of the funniest things anyone had ever heard and the rest of the time would impress with some scientific fact way above his age level.

When he was three and a half, his parents told him that a new baby was in his Ima's tummy. How exciting! Everyone seemed thrilled about it. Until a few weeks after that big announcement. Then he saw and felt the stress levels go way up. He would catch Ima crying a lot and heard snippets of conversations that he couldn't understand. His parents explained that they were worried about the baby being healthy.

The day before Tzviel's little sister arrived, there was a very big move. Tzviel moved in, along with his big sister and Abba to his grandparents home for a long time until the baby could come home.
And then the baby was born. It wasn't joyful. It was stressful. Ima lived at the hospital for 24 days and came back to visit every few days. Tzviel and Mechal came to the hospital to visit every few days. He spoke to Ima by phone and Skype daily. But nothing was the same for anyone. No one was in their normal environment and everything was different.

And then Ima came home from the hospital with Tzviel's baby sister, Tehilla. Everyone moved back home which felt very nice. His family was all together again. Until 2 days later, when Tehilla had to be rushed to the hospital with Ima. And two days later again, they rushed to the hospital. And for the next five months, Tzviel would go to sleep at night, unsure if his baby sister would be rushed to the hospital again. Unsure whether his Ima would be home. Unsure if his family would be together.

The first year and a half of Tehilla's life were filled with frequent moments where Tzviel's family wasn't together. There were so many hospital visits. Sometimes they were just for one day. Sometimes they were for a week or more. Everyone always did as much as they could to help, but the instability of Tzviel's home made him very scared. He desperately wanted his family together at home.

(to be continued)

Tuesday, March 20, 2018

Part 2: How to explain

Part 2:

I thought I had parenting and life figured out before I had kids. I knew all the ways I was not going to parent and saw all the flaws in what everyone else was doing. My kids would never do that and would surely be everything I set out for them. Someone give me a time machine to slap some sense into my naive former self.

This post isn't just about giving an explanation for my lack of posting. It's not about updating the world and letting everyone into my personal life. This post, I hope, will do something. I hope this post gives validation to those that have been down a similar path. I hope this post opens minds and educates. I hope this helps in some way to change the world. I need it to change the world.

I'll start by saying that Tzviel does NOT have pediatric diabetes. Again, he doesn't. But what if I told you he did. What if I told you that around the time Tehilla was born, we started seeing something irregular. What if I told you that we spoke with our family doctor, who directed us medically. What if I explained that we started treating him and doing everything we could. What if I told you that as much as we tried helping and treating him, his condition worsened and we had to keep providing him with treatment. And at some point medication became necessary. How would you react?

You would nod your head in understanding and mention some friend of a friend who also had a kid with pediatric diabetes. You'd listen sympathetically to the challenges we faced and the changes we all had to undergo in our family to accommodate and assist our child. You'd have been supportive and wonderful.

Would you have suggested if we were stricter and better parents, then he never would have developed pediatric diabetes? Would you have called our judgement into question for providing him with medication? Would you have pushed for him to be removed from other kids, fearing he somehow effect the other children?

I'd like to tell you our heart story from a different perspective. Tzviel's perspective.