This is a different type of letter. Most of you aren’t expecting it. But I’ve allowed people to vent in my column, and this mother really needed to vent...
Dear Goldy,
This is a ridiculous letter for your column, but I’m writing it anyway. I find writing cathartic. It helps even me out, and that’s what I need now.
I was joking with my preteen. She said that when she’s a mother, she’ll have funner house rules than I have. I said fine; her house, her rules. She responded, “_____ (her brother’s name) will do the same thing too because you never let us do anything.” I quickly replied before thinking, “_____ isn’t going anywhere.” Then she asked, “Why?”
“Why?” It never occurred to my preteen daughter that her younger brother, who’s diagnosed with Autism and Global Cognitive Disorder, would never move out of the house, marry, and have a family of his own. My son is seven. Why should my daughter think about her brother’s life twenty years into the future now? At home, my son laughs, talks, and sings, but also lives in his own world. My husband and I, as well as my son’s therapists, teachers, ABA, BCBA, and respite workers, work with my son every day hoping that we’re doing right by him. My husband and I transferred my son to a different school, hoping it was the right decision. We had our reasons. Will the new one be better? Are we on the right track for my son to blossom into the mature man he’ll become and be able to do all he is capable of doing?
My son was diagnosed with ASD at three and a half years old. I spent the next week in bed. The future I always imagined for him flew out the window. Whatever I imagined happening will never happen. I needed to let go of that dream and ready myself for the life we will be faced with. Because I will now be involved in every aspect of my son’s life until my death—and you don’t even want to know about the worries I have for when my husband and I are not here to care for our son. Not only did I have to let go of the dream of him studying and complaining about tests, learning how to drive, and walking him down the aisle to his chupah, I had to let go of the small things too. My son telling me how his day at school was? Did he make any projects? Everything in my family’s life changed in the blink of an eye. And in order for me to be fully present for him in his life now, I had to resign myself to the fact that my dreams for him were never going to happen. I mourned my dreams.
That was four years ago. Our family life has changed. Our vocabulary has changed; we now know terms I never thought we would ever need to know. My days are spent (at work) fitting in Zoom calls with school and DOE administrators, going to doctor appointments (many doctors.) Every part of our lives is always adjusting as my son gets older because what worked a year or two ago doesn’t work now that he’s seven. Example: My son figured out how to open our cabinet locks. One morning I woke up to a lake of Dawn in my kitchen because the night before, I had forgotten to lock up the dish soap; but when my son woke up at 5:30 a.m., he found the Dawn and began to squeeze and squeeze. I have to do a check every night as if I’m a general walking through recruits’ barracks in order to make sure nothing has been left out that my son could “play with,” if I don’t catch him first. Another morning I woke up to a crash. My son was actually swinging on the chandelier. He wasn’t hurt, b”h, but half of the chandelier broke... We make necessary changes and continue to do so as he ages. I’m not looking for pity. I’m just trying to explain how different my life and the life of my family is. We’re still working on potty training! It’s been a project for over two years! I’m not looking for a “Why don’t you try...” conversation because, believe me, every parent of a disabled child has tried whatever they’re able to in order to make some aspect of their and their child’s life easier.
My heart breaks when my daughter asks for a “normal” brother. She wants a brother she can play checkers or cards with, or who she can go to an amusement park or trampoline park with who will play with her... Don’t get me wrong, she is the best big sister for my son. Hashem gave us my son on purpose: Because He knew we, all of us, are the best people to love and care for him. My daughter reads books to him, dances with him because my son loves music, tries to teach him new phrases, holds his hand in the street... She always says, “He’s mine too. Hashem gave him to me. Let me help.” But there are times when she’s not so happy to help, and I can’t blame her. We don’t go on day trips. I’m ashamed to say that I can’t take my two children out together by myself because each goes in a different direction and has different needs. It’s unfair to always do what will make my son happy when it makes my daughter miserable. I need my husband or a respite worker with me on outings...
Anyway... April is Autism Awareness Month. Instagram is full of videos made by parents of children diagnosed with ASD directed at parents in the same position they’re in. Those are the only ones that can truly understand what our lives are like. We never have a free moment to breathe. If it’s too quiet, then I begin to look for my son and what he’s doing. Planning a short car trip causes anxiety if my son isn’t in the mood to go in the car. I can’t even sleep because neurodivergent kids have different sleep/wake cycles. It could be three days in a row when he wakes up at 3 a.m., which means I’m up at 3 a.m. And I can’t nap after my kids go to school because then I have to go to work! Forget about switching his diet on Pesach. It was a nightmare.
There are no Shabbos invites for lunch or the entire Shabbos because my son doesn’t sit and runs everywhere and can wake at 2:30 a.m. Having Shabbos guests is difficult too. My son doesn’t have playdates. I curse the rain on Shabbos. We’re stuck indoors. When the weather is nice, we visit three or four parks to pass the time. At the end of the day when I’m tired, I still need to pack his snack for the next day—and give him a bath, check the kitchen... Who can I ask to do any of this so my husband and I can have a 24 or even 48-hour break? No one. He is ours, and we don’t pass him onto others or rely on others to take him. Our families try to understand, but how can they understand waking at 3 a.m. for two days in a row, changing diapers, and trying to play with or teach my son while not ignoring my daughter when he doesn’t have therapy or school? Don’t even start talking with me about screen time. IYKYK. Whenever we’re asked how we’re doing, the fake smile goes on and “B’h fine. Thanks for asking.” No one wants to hear how tired and exhausted we are or how worried we are about mundane things they don’t think twice about.
I’m used to the life I live now. I know to expect the unexpected and to have a Plan A, B, and C. But it wasn’t until my daughter made her innocent comment about her brother moving out that it really hit me. My beautiful, happy, lovable, huggable son will never find his bashert. He’s seven now, but he’ll be twenty, I.Y.H., one day. People won’t see this cute, adorable kid soon. They’ll see a person they’ll tell their own child not to stare at in the street. He’ll never know love from one partner to another, of building a life together with someone else and starting a family.
And in that moment, when my daughter asked “Why?” my heart broke again for my son. I hadn’t really thought about marriage for him. I had, but I never dwelled on it. I’m dealing with him in the present. I must put all my dreams and hopes away so I can be 100% here with my son in the now. But now I knew: There will be no marriage or living on his own or ever not living in a constant state of worry/anxiety. So, when I hear about the craziness associated with shidduchim, questions asked, research done—even before a first date—I won’t have that for my son. I’ll welcome it for my daughter. Yes, I’ll welcome it because it’ll be the only time I’ll be going through it. But I wonder, will having a brother diagnosed with ASD hurt my daughter’s chances at a good shidduch? “It’s in the genes...” People refuse dates for superfluous reasons. What will be said of my son? My son won’t experience the joys in life that a young chasan experiences. My son will never be an “Abba, Tatty, Daddy...” or a “Honey, Sweetheart, Babe...” to anyone. But to think that my daughter may have to suffer one moment of any disappointment or pain over a shidduch because of her brother—it’s too much. She’s been through so much as well. I try to keep my mind focused on the here and now and not worry too much about the future (but how can I not?) This wave of him never dating or knowing the joy that comes along with any of it has hit me like a ton of bricks.
[I will end the letter here. The mother goes on to speak about worries that other families may take for granted.]
A Very Worried and Exhausted Imma
My response in next week’s paper.
Goldy Krantz is an LMSW and a lifelong Queens resident, guest lecturer, and author of the shidduch dating book “The Best of My Worst” and children’s book “Where Has Zaidy Gone?” She can be contacted at This email address is being protected from spambots. You need JavaScript enabled to view it.. Goldy is an experienced dating coach offering private sessions. To inquire, contact her at This email address is being protected from spambots. You need JavaScript enabled to view it..