當我錯過了我兒子患有思覺失調症的跡象 | When I Missed the Signs That My Son Has Schizophrenia

Mental Health Association for Chinese Communities 美國華裔精神健康聯盟

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撰寫者: Patty DeMauro

原始來源: https://www.nami.org/family-member-caregivers/when-i-missed-the-signs-that-my-son-has-schizophrenia/

2021年11月3日


作為一名家長,我深刻體會到,要意識到自己的孩子正在受疾病折磨——無論是哪種類型的疾病,尤其是心理疾病——是多麼困難。在穿越錯綜複雜的心理健康照護體系後,我發現早期發現可以幫助減輕心理疾病的嚴重程度。然而,這一點只讓我更加深陷內疚之中,因為我覺得自己辜負了我的兒子。

我常常問自己:我怎麼會錯過這些跡象?


當這些跡象開始出現


我的兒子 Frank 一直是個「完美」的孩子。他快樂、開朗且聰明。他是個滑雪運動員、滑板愛好者、吉他手,並且差一步就能成為鷹級童軍(Eagle Scout)。最重要的是,他總是那個會在學校餐廳陪伴新同學的孩子。我從未懷疑過,他的未來將會光明而幸福。


變化是逐漸發生的。他的成績開始下滑,接著與朋友之間出現小爭執,然後開始撒些無傷大雅的謊言。他越來越常獨自待在房間裡,最後甚至開始拒絕參與他曾經熱愛的活動。我也越來越常發現他呆呆地凝視著空間。


內心深處,我知道這些可能是警示跡象。但當我與他對峙時,他會露出燦爛的笑容,告訴我我太過擔心了。他向我保證他很好,和其他青少年沒什麼不同。於是,我把這些徵兆歸咎於青少年的典型煩惱。


當這些跡象惡化


對於父母來說,孩子生命中的某些里程碑會深深烙印在我們的記憶裡,通常是那些輝煌的成就。然而,對我來說,有一個特別痛苦的記憶一直揮之不去:那一天,我接到警察的電話,告知我 17 歲的兒子被捕了。


我的第一反應是,警察一定弄錯了。但 Frank 確實被確定了身份。他和另一個男孩闖入了一名同學的家,偷走了一台 CD 播放機。


當我趕到警局,看到警察帶著 Frank 出來時,我立刻注意到他看起來不一樣了。他的臉像是被無形的線拉扯著,擠出一個扭曲的笑容。我沒有質問他,而是緊緊抱住他,告訴他一切都會好起來。不久之後,他被交由我照顧,直到他出庭接受少年法官的裁決。


在法庭上,法官對 Frank 嚴厲訓誡。她命令他歸還被盜物品,接下來四個月內,每週執行八小時的社區服務,並每週接受一次毒品檢測。Frank 表現得很有禮貌,也充滿悔意。他被分配到鎮中心的維護工作,每週三去接受毒品檢測。我開始允許自己感到一絲希望。


當這些跡象轉變成診斷


然而,改變我們一生的電話很快就來了。這是來自法官辦公室的通知。Frankie 沒通過毒品檢測,而且這已經不是第一次了。法官曾與我的兒子談話,警告他若繼續吸毒、無視法院命令,將會面臨後果。最後,法官判處他在縣少管所服刑六個月,他將於次日被送往該機構。


Frankie 依然固執地認為,這只是「微不足道的一點大麻!」當我質疑他為何無視法官命令時,他甚至笑了出來。然後,他就變得沉默不語。我試圖擁抱這個如木頭般僵硬的兒子,但他粗魯地推開了我。他說了一些關於手機的話,我聽不太懂。更多我無法解讀的訊號。我在門口失聲痛哭,看著他在社工和縣警的陪同下走出家門。


Frankie 入獄第二個月後,我收到了少管所醫療單位寄來的一封掛號信。他被診斷出患有急性偏執型思覺失調症。他嚴重退縮,開始聽見幻聽,而據醫生所說,他已完全脫離現實。他們準備開始給他服用一種嚴格管理的藥物,並要求我簽署同意書。


我的理智在與崩潰的情緒抗衡。我開始回顧過去,彷彿透過全新的視角重新審視我們的生活。思覺失調症最初就像一層薄霧,隨著時間的推移逐漸加厚,直到將我和我的兒子完全包圍在難以穿透的迷霧中。


當我們尋求答案


我意識到,如果我不開始學習這種疾病,我的兒子可能會永遠困在妄想和偏執的迷霧中。於是,我們的旅程開始了——這是一場將持續一生的旅程。


首先,我與家庭醫生推薦的幾位精神科醫師交談。我查閱了關於抗精神病藥物的資料,擔心它們帶來的可怕副作用。在與一位專門治療思覺失調症的精神科醫師及 Frankie 的監管醫生討論後,我甚至協調了一種更強效的藥物送達少管所的藥房。


我每天都會打電話給少管所的護士長,詢問我兒子的狀況。她向我保證,Frank 受到了妥善的照顧。她還告訴我,儘管 Frank 仍然在與症狀對抗,但他總是試圖微笑,並經常對護士輕聲說「謝謝」。這讓我感到一絲希望——希望人們能夠看到我兒子病症之外的本質,看到那個我所認識的優秀年輕人。


找到康復之路


經歷了無數的祈禱與小小的進展後,我很幸運地遇見了 NAMI Collier County 的時任執行董事 Kathryn Hunter。認識 Kathryn 之後,我不再孤身一人尋找答案。她強調要善用所有可及的資源(而事實上,這些資源相當豐富)。


她建議我和丈夫參加 NAMI 家長團體,這是一個由家長領導的小組,成員們互相分享應對挑戰與成功的經驗。最重要的是,她向我們介紹了 佛羅里達州積極社區治療團隊(FACT),這成為我兒子康復過程中的支柱。


FACT 採用跨學科方法,為重度精神疾病患者提供全天候、每週七天的醫療照護。她建議我們將 FACT 作為 Frankie 出獄後的第一站。這個計畫的導覽讓我們安心,因為我們知道兒子會有一整個醫療團隊——精神科醫師、個案管理員、治療師和護士——隨時提供協助。


這些導師與資源改變了一切。Frank 得以踏上康復之路,並朝著他應得的生活邁進。Kathryn 的指導,以及我們在這段旅程中遇見的無數倡導者的關懷,使我們堅定地願意分享經歷,並為那些也在與這種疾病抗爭的人們帶來希望。



Patty DeMauro NAMI Collier County 的熱心支持者,並在零售業擁有 30 年經驗,經營 Patty’s Apparel 服裝店(位於 Naples)。透過她的家庭親身經歷,她希望能為那些正在與心理健康問題抗爭的人們提供一條生命線。


Written by: Patty DeMauro

Original Source here: https://www.nami.org/family-member-caregivers/when-i-missed-the-signs-that-my-son-has-schizophrenia/

November 3 2021


As a parent, I’ve learned that it can be unbelievably difficult to recognize that your child is suffering from an illness of any kind, least of all a mental illness. After navigating the maze that is the mental health care system, I discovered that early detection can help reduce the severity of mental illness. This only served to fuel my guilt that I had failed my son.
I’ve often wondered: How did I miss the signs?


When the Signs Started

My son Frank had been the “perfect” child. He was happy, fun-loving and intelligent. He was a skier, skateboarder, guitar player and one notch from Eagle Scout. Most importantly, he was the child who sat with the new kid in the lunchroom at school. There was never a doubt in my mind that a bright and happy future awaited him.
The changes were gradual. His grades began to slip, then came minor skirmishes with friends, followed by small white lies. He was spending more time alone in his room. Eventually, he refused invitations to do the things he loved. More and more frequently I’d find him staring into space.
Deep down, I knew these might be signs warning me of trouble. But when I confronted him, he would turn on a thousand-watt smile and tell me I worried too much. He assured me that he was fine and no different from any other teenager. So I dismissed it all as adolescent angst.


When the Signs Escalated

For parents, certain milestones in our children’s lives are etched permanently in our minds, usually triumphs and achievements. However, for me, one particularly painful memory endures: The day I received a phone call from the police telling me that my 17-year-old son had been arrested. My first thought was that surely the police had made a mistake. But Frank had been positively identified. He and another boy had broken into a classmate’s home and stolen a CD player.
When I arrived at the police station, and they brought Frank to me, I immediately noticed that his face looked different. It was as if strings were pulling on the corners of a smile that was twisted on his face. Rather than question him, I held him tightly and told him he would be fine. Shortly after, he was released to my care until his appointment to appear before a juvenile court judge.
Once before the judge, Frankie received a stern lecture. She ordered him to return the stolen property, to perform eight hours of community service a week for the next four months and to submit to weekly drug testing. Frank was respectful and apologetic. He was assigned to a maintenance crew in our town center. Every Wednesday, he went for his drug test. I allowed myself to feel a sense of hope.


When the Signs Turned into a Diagnosis

Then, the phone call came that would change our lives permanently. It was the judge’s office. Frankie had failed the drug test. And this hadn’t been the first time. The judge had spoken to my son and warned him of the consequences of getting high and ignoring her ruling. The judge then sentenced him to the county’s juvenile detention center for six months. He was scheduled to be transported the following day.
Frankie remained rigid in his insistence that it was such a “minuscule amount of pot!” He even laughed when I questioned his disregard for the judge’s orders. And then he just shut down. I hugged a wooden statue of my son who gruffly pulled away from me. He said something about his cell phone that I didn’t understand. More signs I was unable to decipher. I wept openly as he walked out the door flanked by a social worker and a county officer.
It was during the second month of Frankie’s incarceration that I received a certified letter from the detention center’s medical unit. He had been diagnosed with acute paranoid schizophrenia. He was severely withdrawn, hearing voices and, according to the doctor, completely out of touch with reality. They were prepared to start him on a strict regime of medication for which I had to give my consent.
My rational mind fought against my desire to shut down. It was as if I’d been looking at our lives through a different lens. Past events began to make more sense. Schizophrenia began as a fine mist that thickened over time until my son and I were enveloped in an impenetrable fog.


When We Pursued Answers

I sensed that if I didn’t begin to learn about this disease, my son might remain in his haze of delusion and paranoia. And so began our journey — one that has been, and will continue to be, a lifelong effort.
First, I spoke to several psychiatrists referred by our family physician. I read up on anti-psychotic medications and worried about the terrifying side-effects. Along with a psychiatrist who specialized in the treatment of schizophrenia and permission from Frankie’s doctor, I even coordinated the delivery of a more powerful drug to the detention center’s dispensary.
I called the charge nurse at the detention center daily to check on my son. She assured me my son was getting the proper care. She also told me that even though Frank was struggling with his symptoms, he always tried to smile and often whispered “thank you” to any nurses that visited. This information made me hopeful that people might look past my son’s diagnosis and see the amazing young man that I knew.


Finding a Path to Recovery

Many prayers and small steps later, I had the good fortune of meeting Kathryn Hunter, the then-Executive Director of NAMI Collier County. After meeting Kathryn, I was no longer alone in my search for answers. She stressed the need for embracing every available resource (of which there were many).
She suggested my husband and I attend the NAMI Parents Group, a peer-led group that shared the challenges and successes of those facing similar experiences. Most importantly, she introduced us to the Florida Assertive Community Treatment team (FACT), which became an anchor throughout my son’s journey to recovery.
FACT, an interdisciplinary approach, offered 24-hour, seven-days-a-week care to people with severe mental illness. She advised us to make FACT our first stop upon our son’s release from the detention center. The orientation to the program gave us a refreshing sense of security, knowing that our son had a psychiatrist, caseworker, therapist and nurse who were only a phone call away.
These mentors and resources made all the difference. Frank was able to get on the path to recovery and work toward the life he deserved. Kathryn’s inspiration, and the concern of the many advocates we were privileged to meet along our journey, have kept us committed to share our experiences and spread hope to those also battling this illness.


Patty DeMauro, an avid supporter of NAMI Collier County, brings 30 years of experience to her retail store: Patty’s Apparel in Naples. Through her family’s personal experience, she aspires to offer a lifeline to those suffering from mental health conditions.


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