La versión en español está después de la versión en inglés.
I’ve been writing my blog for more than 15 years and many readers have been here for much of that time and have become old friends. How lucky I’ve been to have you. Many of you have joined in recent years (for which I’m also grateful) and I realized that not everyone may be caught up on all aspects of my life. For example, The Kid Brother. I talk and talk about him but you may not understand what’s going on.
I was nearly 6 years old when he was born and our sister, Dale, was nearly 9. He was an adorable baby, always a bit temperamental, but adorable. Some babies are more temperamental than others. By the time he reached the age of 3, his temper was explosive. Explosive tempers were common in my family, but his had no controls. I remember the first time he threw a toy metal gun at me and hit me square on the bridge of my nose. After that, there were black eyes from other hurled objects. I learned to duck. When he wasn’t having a tantrum for no apparent reason, he was still adorable.
We moved from Long Island to Brooklyn when he was 4. When he was 5, I took him to school for his first day of kindergarten. It was my first day of 6th grade in a brand new school. He had an excellent teacher who immediately recognized there were developmental problems. She spoke with my mother and did what she could. He made it to 1st grade but was then held back. And then he was placed in special education which was the beginning of several destructive years.
This was the New York Public School System in the mid 1960s. Their special education classes seemed to be nothing more than catch-alls for children with behavior problems. Although Chuck hadn’t demonstrated his temper at school, he grew more and more angry and less manageable in the two years he spent there. And he clearly received absolutely no education. Dale was loving and kind, and jumped at the chance to help anyone less fortunate, but she had her own problems and was not considered capable of taking on the responsbilities (and calming) that I took on with Chuck. I would wait outside every morning for the special bus that would pick him up (which is why I now hate when people jokingly use the phrase “short bus”).
Finally, my mother was told of a private school for children with special needs. He didn’t get much education there either. But he was respected, cared for, and safe. Also, there were many children in the school who were severely physically disabled and he learned that he could be of help to them. He became protective of some and considered them his friends.
His temper, however, grew worse. By the time he was 11, he was on medication and seeing a psychiatrist once a month. My father took off work to go the first time to meet the doctor. After that, as a brand new driver, I took my mother and KB. A miserable, stressful ride every time. I maneuvered my father’s boat-sized Chevrolet Impala sedan through congested streets of Brooklyn. My mother was a wreck and harangued me the entire drive. Chuck sat miserably in the back. I was in knots.
My mother, for whom appearances meant so much, would get upset when Chuck acted out in public and drew attention. By the time he was 13 or 14, people suspected he was on drugs (and not the kind he WAS on). Life became easier as he aged and began to look more obviously disabled. I began to have sixth sense it seemed for Chuck’s tantrums and often would head them off before he blew.
Chuck was eventually diagnosed, first as minimally brain injured, then minimally mentally retarded. Remember this was the ’60s. It’s possible he has Fragile X Syndrome, a genetic disorder caused by a mutation on the x chromosome. We knew nothing about the syndrome until the 1970s and we learned that my grandmother was a carrier. He was never tested, so I can’t say for sure but many of his behaviors and physical characteristics as he aged fit.
I grew up believing that if I had only been a better person somehow, he would have been “normal.” Every year when I made my birthday wish, it was that Chuck would wake up the next day and be “cured.” I was in my 30s before I actually wished for something for myself. And, believe me, I was not selfless.
After Dale died in 1981, my parents completed their wills. My mother told me, “You get everything.” And then added, “Including your brother.” Six years later, just before my father died, I was fortunate to get Chuck placed in a group residence thanks entirely to a dear friend’s help.
I spent much of my life believing he was simply my responsibility and never respecting myself enough to appreciate how much I loved him (or anyone else for that matter). Around 2000, I went to New York for a visit. Chuck arrived at my mother’s the next morning and when we saw each other, our faces (and bodies) exploded in joy. We both felt it. That was when I realized how much I loved him. My mother even commented on it.
I was never the perfect brother and I’m still not, but I do my best and I do love him. And he knows it. Oh, and he regularly drives me up a wall.
Llevo más de 15 años escribiendo en mi blog y muchos lectores me han acompañado durante gran parte de ese tiempo, convirtiéndose en viejos amigos. ¡Qué afortunada he sido de tenerlos! Muchos se han unido en los últimos años (por lo que también estoy agradecida) y me he dado cuenta de que no todos están al tanto de todos los aspectos de mi vida. Por ejemplo, mi hermano pequeño. Hablo mucho de él, pero puede que no entiendan lo que pasa.
Yo tenía casi 6 años cuando nació y nuestra hermana, Dale, casi 9. Era un bebé adorable, siempre un poco temperamental, pero adorable. Algunos bebés son más temperamentales que otros. Cuando cumplió 3 años, su temperamento era explosivo. Los temperamentos explosivos eran comunes en mi familia, pero el suyo no tenía límites. Recuerdo la primera vez que me lanzó una pistola de juguete de metal y me dio justo en el puente de la nariz. Después de eso, tuve ojos morados por otros objetos que me lanzó. Aprendí a agacharme. Cuando no tenía una rabieta, sin razón aparente, seguía siendo adorable.
Nos mudamos de Long Island a Brooklyn cuando tenía 4 años. Cuando tenía 5, lo llevé a la escuela para su primer día de kínder. Era mi primer día de sexto grado en una escuela completamente nueva. Tuvo una maestra excelente que inmediatamente reconoció que había problemas de desarrollo. Habló con mi madre e hizo lo que pudo. Llegó a primer grado, pero luego repitió. Y entonces lo colocaron en educación especial, lo que marcó el comienzo de varios años destructivos.
Esto ocurría en el sistema de escuelas públicas de Nueva York a mediados de la década de 1960. Sus clases de educación especial parecían ser nada más que un cajón de sastre para niños con problemas de conducta. Aunque Chuck no había demostrado su mal genio en la escuela, se volvió cada vez más enojado e incontrolable durante los dos años que pasó allí. Y claramente no recibió absolutamente ninguna educación. Dale era cariñosa y amable, y siempre estaba dispuesta a ayudar a los menos afortunados, pero tenía sus propios problemas y no se la consideraba capaz de asumir las responsabilidades (y la tranquilidad) que yo asumía con Chuck. Todas las mañanas lo esperaba afuera el autobús especial que lo recogía (por eso ahora odio cuando la gente usa en broma la expresión “autobús para niños pequeños”).
Finalmente, le hablaron a mi madre de una escuela privada para niños con necesidades especiales. Allí tampoco recibió mucha educación. Pero era respetado, cuidado y estaba seguro. Además, había muchos niños en la escuela con discapacidades físicas graves y él aprendió que podía ayudarlos. Se volvió protector con algunos y los consideraba sus amigos.
Sin embargo, su temperamento empeoró. Para cuando cumplió 11 años, ya tomaba medicamentos y veía a un psiquiatra una vez al mes. Mi padre pidió el día libre en el trabajo para ir a la primera cita con el médico. Después de eso, como conductora novata, llevé a mi madre y a KB. Un viaje miserable y estresante cada vez. Maniobré el enorme Chevrolet Impala sedán de mi padre por las calles congestionadas del viejo Brooklyn. Mi madre estaba hecha un manojo de nervios y me regañó durante todo el trayecto. Chuck iba cabizbajo en la parte de atrás. Yo estaba hecha un manojo de nervios.
Mi madre, para quien las apariencias eran tan importantes, se enfadaba cuando Chuck se portaba mal en público y llamaba la atención. Cuando tenía 13 o 14 años, la gente sospechaba que consumía drogas (y no del tipo que consumía). La vida se le hizo más fácil a medida que crecía y su discapacidad se hacía más evidente. Empecé a tener una especie de sexto sentido para las rabietas de Chuck y a menudo las evitaba antes de que explotara.
A Chuck finalmente le diagnosticaron primero una lesión cerebral leve y luego un retrasado mental. Recordemos que esto ocurrió en los años 60. Es posible que tenga el síndrome del cromosoma X frágil, un trastorno genético causado por una mutación en el cromosoma X. No sabíamos nada sobre este síndrome hasta la década de 1970, cuando descubrimos que mi abuela era portadora. Nunca le hicieron pruebas, así que no puedo asegurarlo, pero muchos de sus comportamientos y características físicas a medida que envejecía coincidían.
Crecí creyendo que si tan solo hubiera sido mejor persona, él habría sido “normal”. Cada año, al pedir un deseo de cumpleaños, pedía que Chuck se despertara al día siguiente “curado”. Tenía treinta y tantos años cuando por fin deseé algo para mí misma. Créanme, no era nada desinteresada.
Después de que Dale falleciera en 1981, mis padres redactaron sus testamentos. Mi madre me dijo: «Lo heredas todo». Y añadió: «Incluido tu hermano». Seis años después, gracias a la conexión de una querida amiga, tuve la suerte de que lo admitieran en una residencia para personas con discapacidad.
Pasé gran parte de mi vida creyendo que simplemente era mi responsabilidad y sin respetarme lo suficiente como para apreciar cuánto lo quería (ni a nadie, en realidad). Alrededor del año 2000, fui a Nueva York de visita. Chuck llegó a casa de mi madre a la mañana siguiente y, al vernos, nuestros rostros (y cuerpos) estallaron de alegría. Ambos lo sentimos. Fue entonces cuando me di cuenta de cuánto lo quería. Mi madre incluso lo comentó.
Nunca fui el hermano perfecto, y sigo sin serlo, pero hago lo que puedo y lo quiero mucho. Y él lo sabe. Ah, y a menudo me saca de quicio.
Click the thumbnails to enlarge.
Haz clic en las miniaturas para ampliar.
Mitchell, even though I’ve been reading your blog for years now, I think this is the first comprehensive post I’ve seen about your history with your brother — so thanks for all the history and detail. You’ve done so much for him! (And he for you, in his own way, I suppose.) I love all the photos, too. You’re a good brother and I’m sure Chuck knows that, behind all the “Who’s on First?” and Superman jokes.
Steve:
I can’t even remember how I ever “explained” Chuck in the first place. I know Chuck knows I love him and I know he appreciates me.
No one could be as devoted to his brother as you are without truly loving him. It’s a selfless love.
Love,
Janie
janiejunebug:
Thanks. I feel a bit ashamed now. I wasn’t fishing for compliments.
That was a lovely post. What a huge heart you have.
Kathleen:
I hadn’t intended to be so me-me-me. Was just trying to tell his story concisely.
Without you, where would KB be? You’ve done more for him than many people would ever understand, or recognise. Underneath it all, I’m sure he knows it. Even if he is infuriating! Jx
Jon:
Oh, Chuck definitely knows it. And that’s really nice.
You already know how much I love and respect you and all you have done and continue to do for KB. But it never hurts to let you know those facts again. You are a very lovable and wonderful big brother. KB knows it in his heart even, perhaps especially, when he is driving you up the wall. xx Mary
Mary:
Thanks so much. Sorry I seem I like I was fishing for compliments. Chuck definitely knows I love him and I know he loves me.
I don’t know how long I’ve been reading your blog now I’ve always enjoyed the stories of you and your brother and how he can drive you nuts. But you have to admit you’ve been adorned good brother and he is lucky.
On a side note are we surprised even at a young age you were sitting on something long in phallic?
Mistress Maddie:
Thank you for noticing my cannon. It can be a burden.
Thanks for this, Mitchell. I admire your patience and resilience. Both of you know how much you mean to each other. It has been a long but rewarding road for both of you.
Jim:
We both have grown to understand how much we love each other. Thanks.
Thanks Mitchell for sharing all this. I didn’t t know the full story of your life with KB. I always enjoy reading about your interactions with Chuck!❤️❤️
Robin:
Thanks. I realized after I wrote this that I never explained it at this level.
Awww, I love the pictures! I’m glad to hear this story with this much detail.
May I ask, how did your family come to know that your grandmother was a carrier? (And, is that your mother’s mother, or father’s mother?)
Judy C:
This is my maternal grandmother. In the 70s, one of my cousins wanted to have children. In our extended family, one aunt had two severely disabled sons (one fits every characteristic of someone hit hard by Fragile X Syndrome). There was Chucky. And I had other cousins with issues. So my cousin thought she should have genetic testing before having kids. We had never heard of Fragile X before then. It was determined our grandmother carried the gene. When my cousin questioned how our grandmother could have had 7 perfectly normal, healthy children, the doctor asked how many miscarriages she had. About 6! Those could very well have been affected by Fragile X. My mother had a miscarriage after having the two of us and then had Chuck. Another sister had the same story. Finally another had a miscarriage after her two and everyone said, “Stop!”
Thanks for taking the time to write this out and share the backstory with those of us who have not been here from the beginning. I am always in awe of your love and care for your brother and the things you do for him. And not just because he has disabilities in your helping him out, but because you are an amazing sibling. I have four siblings and have nothing even close to the relationship you two have and of that I’m incredibly envious. But I have no doubt this is also hard on you. It taxes your energy, your finances, and your patience, making all the more commendable and admirable. I feel lucky to have met you online and then in person and I look forward to many more stories about the interactions with your brother. Not because they’re entertaining. But because their heartwarming.
Sorry…that Anon çomment was me, Sassybear!
Sassybear:
I realize I never really went into this level of detail in the past. My mother was alive at the time and I wouldn’t have shared as openly.
None of us are a perfect anything but I think you come close as big brother. KB looks a little elfin. I wonder if that’s a characteristic of Fragile X Syndrome.
ellen abbott:
I’ve never heard KB described as elfin before. Interesting. Some physical characteristics as a person ages can be narrowing (triangulation) of the face, and protruding ears. Chuck, if he would stand up straight, might be about 5’9″. I’m 6’2″ and Dale was about 5’11”. Interestingly, too, people with Fragile X have a tendency to be shorter than average. A lot changed when he reached puberty, also common.
A lifetime of love.
David Godfrey:
Yep.
Of course you have been the best possible caretaker/big brother K.B. could have ever had but it hurts my heart to think of how much of yourself you’ve had to sacrifice to give him all the love and caring he’s needed. Trust me when I say that few actual parents would do this. I’m not saying that you shouldn’t have done it, I’m just saying that you have gone way over what any sibling I’ve ever heard of has done when it comes to the way you’ve taken care of him, loved him all these years. And I know that you probably just couldn’t have possibly done it any differently. Not only are you by nature a very kind and caring person, you were taught from childhood that it was your job to watch over him, ensure his safety, attend to his needs. And then for you to believe that if you’d been a better person, Chuck would have been more “normal”? That is unconscionable. My god. YOU needed therapy to help you see the unreasonableness of this, to help you see your worth.
I could say more. I won’t. But thank you for trusting us with this honesty and truth.
Ms. Moon
Ms. Moon:
This reminds me of other stories I need to relate. I was terrified of therapy when I was young because I was afraid my “secret” [sexuality] would be discovered. I didn’t get help until Dale died and I was out of the closet. That therapist said, “A father’s love is conditional while a mother’s love is unconditional.” I was a mess but still thought ‘this woman doesn’t know what the fuck she’s talking about.’
You may have been a mess but that therapist did not know what the fuck she was talking about.
I’d never thought of how frightened you must have been, thinking that if you went to a therapist your secret would be revealed. Oh, Mitchell. That makes me even sadder.
Ms. Moon:
The current me would have replied to that therapist with, “Have you met my mother?!?” What an idiotic generalization… and by a professional.
Scoot, you’re the loving, big hearted big brother to an exuberant X-man! You both should count yourselves fortunate. What? You didn’t really expect me to get all mushy, did you? Seriously, I love reading (when I can focus) about your exploits with the Chuckman. As usual, big hugs.
Deedles:
I LOVE thinking of Chuck as an X-man!
What Ms. Moon & Duchess Deedles said!
Tundra Bunny:
Thanks. They’re both so wise and insightful… and kind.
“I grew up believing that if I had only been a better person” … you were THE better person. You were just a child yourself, and rest assured that no one could have done more or have been a better person than you were and continue to be. P.S. Happy Pride! 🌈
Shirley:
Ah, thanks. I didn’t mean to be fishing for compliments!
That’s so common, that those of us with relatives who need special care wonder if we could have fixed them. We couldn’t, and what you do for him is far more than many parents do. It’s very hard on you, but you go on anyway. I have such admiration for you.
I suppose labels don’t help much at this age, but when they’re younger, we’re desperate for a way to understand and describe what they need. I hear you on the BOCES programs, much better now I think, but then definitely warehousing rather than any teaching.
Boud
Boud:
Everything was my fault when I was young(er). I’ve never needed a label for Chuck except that people have always asked what his diagnosis is. Any answer I supply comes with a paragraph of qualifiers and explanations.
Thank you for sharing all this. I only knew the bare minimum from what I’ve picked up over the last few years here.
I’ve said it before and I’ll say it again. You are a good, kind, and loving person, Mitchell, and I admire you greatly.
Kelly:
I’m now ashamed because it seems like I was fishing for compliments. Thanks for the kind words.
It didn’t come off that way at all. I enjoyed reading something so inspiring and uplifting.
The birthday candle wish is a very vivid memory for me too. My mother would always glance at me to remind me what that wish had to be. My brother was 18 mos older than me and like you I eventually became his legal guardian. It seems like KB is in a good place. Its hard to find a good place. My brother’s last residence was caring and I am grateful that he spent his last years there. Chrissy couldn’t communicate like your brother and was very very hyperactive. I had three much younger siblings so I was the one in charge. I really appreciate your sharing your story. You should know that you are a very good brother.
Claudia (I don’t know why but I am coming out anonymous)
Claudia:
And clearly you are a very good sister. I know you completely understand. At one time I thought of writing a book for siblings like us. Ah well.
I’ve been reading your blog for seven or eight years now, and although you post a lot about your brother, this is the first time I’ve gotten the backstory. Very beautifully and sensitively written. Thank you.
Kirk:
I wonder if I ever even explained in this detail.
I think that it has all been said above. You are the best brother and I find it a little sad that you had so much responsibility for your KB when you were so young yourself. Thank you for the story. He was a cute little boy!
Frances
Frances:
When I was in my 20s, I considered writing a book for siblings like me. What ever happened to that idea? He was adorable when he wasn’t monstrous.
Mitchell, thank you for sharing the story of KB on your blog. It brought tears to my eyes. I am not sure how long I have been reading your blog, maybe about 6 or 7 years? I have really loved getting to know you through your words and photos. Your description of driving through the streets of Brooklyn with your mom and brother must have been absolutely dreadful. You are a good, kind, and thoughtful person. These are not compliments, just the facts as I see them!
Michael:
I can still feel the tension of those drives. So much tension, and my mother didn’t keep it to herself. I can’t believe we even got Chuck in the car. I wish I felt like a good, kind, and decent person. Sometimes I do. Thanks!
Beautiful, and thank you for sharing! That places everything into context.
You’re a good brother, and an excellent caretaker.
Rade
Rade:
A comment you recently made had me realizing I needed explain to more about who we are as a family. Thank you for that!
Wow! That’s very moving and turned in quite an unexpected direction. I admire your self-revelation; this must have churned your innards a bit to write it. I don’t know if I am capable of doing so myself. 😘
Wickedhamster,
I guess it did churn my innards a bit. The telling was kind of a revelation.
I have been following your blog for quite some time and I never knew the whole KB story.
How hard for Chuck, and you and your family, not knowing what was wrong but having to adapt and learn how to manage his temper.
Your mother “giving” you Chuck was a sign of how she felt about you, and how she knew how you and Chuck felt/feel about each other.
You can call it responsibility but a lot of people would never take that on, and that’s where the love comes in.
It’s love.
And now my eyes are wet.
Bob,
I thought I was telling this for those who haven’t been reading me for long. But I realized I never told this much before.
I have been reading your blog for years – never commented. I always realized you cared for KB but never realized in what capacity or his story. You know there are unselfish and truly good people in this world but we don’t always get to hear their struggles and story. Thank you for trusting us with yours. You are indeed a brother any of us would be so fortunate to have xx
Rosemary:
Thanks so much for sticking with me and for your comment today.
you are fortunate fellows to have each other.
Urspo:
I tell him he’s my best friend.
Oh Mitchell ❤️❤️❤️❤️ Olivia
Olivia:
Sending hearts back to you. Thanks.
Mitchell, thank you for sharing this with us! My 25 year-old grandson is on the autism spectrum and I can appreciate some of what you and your family went through, although our experience was not as intense as yours. There were early signs and suspicions that were glossed over and several approaches tried in an attempt to help him be “normal.” Finally, he has been accepted for who he is and it’s made all the difference. He has a job where his fellow workers love him, he has his own apartment, and drives on Austin’s busy highways that scare the dickens out of me. lol I also have to say there is more information and increased public awareness now that has been a big game changer for folks like him. Bravo to you for being such a good brother.
TexasTrailerParkTrash:
Fragile X Syndrome often manifests like autism. Though, unlike your grandson, Chuck functions mostly at the level of a 6-year-old. I’ve always thought he’s 6 going on 90 (I used to say going on 65, but he’s now 66). I’m so glad your grandson grew up in a time when there was more knowledge and more help — and more respect. So many people were limited in what they could achieve when they would have been capable of so much more, like your grandson. Hugs to you!
My grandson and his mom (my daughter) went to New York City about a year ago. It was something she promised him when he finished high school. They had a wonderful time visiting The Top of the Rock, the Metropolitan Museum, and Times Square. She was pleasantly surprised to find how helpful people were at the airport and hotels, etc., when she told them he was autistic and needed a little extra patience. Many went out of their way to accommodate them. That probably wouldn’t have been the case ten years ago.
Beautiful post full of humanity. It is nice to hear about the kid brother and how he manages his life. You are the good brother (not a compliment) a simple fact.
larrymuffin:
Thanks!