“What’s seven plus four?”
“Eleven?” I answer cautiously.
“What’s eight plus three?” my nephew Jason fires at me.
“Eleven?” I reply curiously.
“What’s six plus four?” Jason squawks.
“Ten!” I retort, starting to feel quite impressed with myself.
Jason paces, excitedly, as my daughter, Hadassah and I gingerly set foot in the entryway of his home.
His excitement is marked with more math problems. Seven plus two. Eight plus five. Nine plus four. Back and forth.
Animated and energized, Jason paces.
“Who is your drama teacher?” Jason barks.
As my eyes widen and my shoulders start to shrug, ever so slightly, Jason gets louder and more urgent.
“WHO IS YOUR DRAMA TEACHER?”
My sister-in-law, Andrea, gently intercepts: “He wants you to ask him who HIS drama teacher is,” she explains.
“Oh! Jason, who is your drama teacher?” I ask.
“MISS LORI!” he sings as he prances into the kitchen, whooping excitedly.
My nephew Jason is autistic. He is 17 years old; the same age as my oldest daughter.
I don’t get to see Jason very often, since he lives with his parents in Maryland. In fact, it’s been many years since I’ve spent any meaningful time with him. Travel is impossible for Jason. Any change in routine upsets him tremendously. My brother, David, and his wife, Andrea, have introduced Jason to each of my children through family photographs. Jason has learned to recite the names of each of his seven cousins. And though it has been a while, he knows I am his “Uncle Mike.”
David and Andrea welcome me and Hadassah into their dining room. We only have two hours before we have to head to the airport – not a particularly long time to enjoy getting reacquainted with family. But as we settle into our seats, it becomes increasingly clear that our two hours together won’t be about reacquainting ourselves at all. David and Andrea don’t have that luxury. Jason needs constant supervision. And since there are visitors in his home, Jason also needs extra coaching and redirection; new people make him agitated and upset at times, and his parents have to work extra hard to reassure and calm him.
Jason, a tall and strikingly strong young man, spends the entire two hours cycling between the dining room, kitchen and playroom. Barking, chanting and whooping. Back and forth. In and out. Round and round. Loud and strong. On and on.
And I watch. I watch David and Andrea, who aren’t afforded more than just a few moments at the table. I watch as Jason yells and screams and pushes and paces. I watch David and Andrea’s hugs and gentle touches. I watch their calm and caring demeanor. I watch their patience. I listen to their soothing words. And I am in deep, indescribable awe.
I am not new to parenting, or noise, or chaos.
My wife and I have seven children, four of whom still live at home.
And I am a pediatrician. I am surrounded with crying babies, angry toddlers and anxious parents. Day in and day out.
I care for many families with children on the autism spectrum and up until now, I managed to fool myself into thinking I was on the front lines with these families; that somehow, I basically knew what it entailed to raise a child with autism.
We can never understand another’s challenges, nor can we judge how they react to, are consumed by, or work to overcome these challenges.
But after two hours with Jason, I am humbled at how wrong I was. And, I have to be honest, that after those two very long hours, I couldn’t wait to leave. And I couldn’t help but admit to myself that I would be too selfish and impatient and intolerant to survive Jason, if he were my child.
Yet somehow, my brother and his wife don’t just survive Jason, they parent him… actively and intentionally. They lead with empathy and love and kindness. They lead with smiles and caring. They lead with: “Who is your drama teacher, Jason?” and, “What’s eight plus four, Jason?” and, “Who loves you more than anything, Jason?”
Somehow, Jason got the parents he needed. And I got the perspective that I needed to help me understand the families I serve: the perspective that we can never understand another’s challenges, nor can we judge how they react to, are consumed by, or work to overcome these challenges.
But we can observe those who are more patient, more kind, and more selfless than ourselves, and we can learn from their greatness.
(11) Nancy, December 2, 2019 12:46 PM
I just read the article again.....
And I think the author was trying to say that he had gotten a lesson in humility from spending time with Jason. I am the mother of a now young adult on the autism spectrum and I have worked with ASD children in a professional capacity. Leading a social skills group for two hours once a month was hard work, but the parents of the children I worked with had a MUCH harder life. I always hired extra staff to watch for those children with a tendency to elope (run away). However, I did not have to worry 24/7 about my child running away in the dead of winter wearing no shoes. If we have more rachmones today than we did yesterday, we are in good stead.
(10) Anonymous, December 2, 2019 5:18 AM
Why didn't you visit?
Parents of children with special needs often suffer from isolation. You are an uncle and you knew Jason wouldnt travel. Why didnt you visit him sooner? His parents would really have benefited from some family support. Dont think they didnt notice that you were itching to leave. A little empathy can go a long way.
(9) Anonymous, December 2, 2019 2:44 AM
Parent would find this article disheartening
I appreciated the brutal honesty of this article but found parts of it offensive ( as a parent of a child with special needs ). He could have written the kudos to his brother without explicitly relaying his relief that he doesn’t have to live with a child like that . This doctor should go home and brainstorm how he can help his brother in some capacity .. by calling his nephew or Skyping , sending a favorite toy , sending money for respite care , etc . Hopefully , These two hours have educated him in a powerful way to improve his empathy to his patients as well.
(8) Steven Fox, December 1, 2019 11:39 PM
Milestones
It is a nonprofit which helps those on the spectrum.. including parents, those of us who are on the spectrum, and professionals...their confidence in the spring has over 100 educational sessions...
(7) Yehuda Minchenberg, December 1, 2019 10:36 PM
This article about the author's autistic nephew is spot on!
HI,
As a father of an 18 year old son with autism, I read this article and found myself nodding from beginning to end. The author's description sounds exactly like my son (he is not into math and his art teacher but he cycles from room to room, gets very animated, is high energy all the time, and requires a tremendous amount of supervision. Unlike the child in the article, our son is willing to travel, Boruch Hashem, and therefore has more of a relationship with his aunts and uncles. Thank you so much for publishing this- it gives us tremendous chizuk that others are facing the same challenges and doing the best they can (as we try to do!)
(6) Tara, December 1, 2019 9:46 PM
Thank you for this article. As a parent of a blind/non verbal autistic son I think all parents wonder how they get through it. I guess the best thing you can do is be flexible and have a open heart. My son is 19 and is with me 24/7. Some day go well and other days not so much. We live rural and there are days I take the 30 minute drive to buy groceries and 1 minute into the store hes having a meltdown so I have to leave my groceries and drive home again. I know its only the the Lord that has given me the strength to get through each day. Some days seem like eternity but just last Shabbat when we were also celebrating his 19th, I wonder where the time has gone. It's a rollercoaster ride but even if there were a magic button to go back and not have him it would be impossible for me to choose that life.
Nancy, December 2, 2019 12:28 PM
To commenter #6 Tara
Have you been able to access any respite type of services through your county? Perhaps the social worker at your son's school can assist you in this regard. I too am the mother of a now young adult on the autism spectrum, and I know first hand just how exhausting this care giving can be. I also know that one often needs to be a detective in order to obtain the appropriate services for one's child.
(5) Dina Barten, December 1, 2019 7:04 PM
Autism
We also have an autistic girl and recgnize the whole situation.
(4) Joseph A Toubes, December 1, 2019 4:46 PM
There was this new principal from Texas
I am unique, a chemistry teacher (retired) with a masters in behavior and learning disabilites. I also was case manager for 3 group homes , mild, moderate and severe/profound mental disabilities. So working with that population was a benefit, plus I also taught youth at risk at a court ordered program for 12 years.
Needless to say my last 5 years, i was transferred to work with 11th and 12th graders in science for some students. I was given a tall autistic student who was boarder line trying to make it work and not. One day this student came in and was pacing which was not good for him. So I let him decide what would be the best way for him to deal with his own behavior. In so many words,"Just leave me the F*** alone, I will do it when I am good and F***ing ready." Worked for me. So I went on with the rest of the class. The principal was very new, from Texas. Full of spit and vinegar, wanting to be top dog one day. He walks by the room sees the kid pacing, ranting, raving, arms in the air but not in the seat. Suddenly the door opens, and this prinicpal tackles this kid who by that moment was just about to settle down and decide if he was ready to work. I had to pull the principal off the kid, and the kid was now in a fight or flight mode. I am only 5 ft 6 in and this kid is a stocky 6ft 3 in. So I am telling the principal to leave, the principal is yelling that he is going to expel the kid. I am telling him to leave my room and I will handle it. After the dust settled, Iwent to the principal and said, "There was no problem, you can't expel special ed kids, let alone suspend them because of their disability. In the future, I will call you if I need any help. right now i am just fine. " It takes having people who understand how to work with kids with special needs, and many of the principals are without a clue
(3) Devorah, December 1, 2019 4:09 PM
I don't think the parents of Jason would appreciate this article
As a parent of a child with special needs, this is offensive. The uncle calls the visit which must have been super hard on the parents, too long, that he couldn't wait to leave? And that Jason got the parents he needed? These parents did not start out this way, they have no choice but to parent Jason and be patient with him. The author can just say he was humbled and in awe of the patience. And that he can learn to be more patient with his own children, so that he is not tested with such a severe challenge as having a child with special needs.
nechemia coopersmith, December 1, 2019 6:00 PM
The parents of the boy read and approved this article
I understand why some readers may find the sentiments expressed in the article offensive. As a parent of special needs child i didn't view it that way (although my wife did) - i think the author's honesty, while harsh, makes the article powerful and thoughtprovoking.
Nancy, December 2, 2019 12:57 AM
To Nechemia Coopersmith
This is slightly off topic, but I just wanted to shout out a hello. I was on the Women's Re Connection trip to Israel a few weeks ago and we all had Shabbos dinner with you on Friday night at Aish Ha Torah. It was the first trip I ever took to Israel, but Iy"H NOT the last one!
Alan ., December 1, 2019 7:48 PM
I don't agree with your premise...
I am glad that the parent's approved the article.
That said, the author did a yeoman's job of conveying not only his deficiency if he were challenged, but went above and beyond this and complimented his brother and sister-in-law.
Yes, it is true that Jason's parents did not start out the way they needed to be with their son. Each and everyone of us can rise, no, must rise to whatever challenge Hashem puts before them, as best they can. The author thankfully did not have to step up to the challenge with his own children. This does not take away from his empathy nor from speaking the truth, such as, paraphrasing, 2 hours was more than enough for him. Jason's parents can not have this luxury. But I do not think that because the author was being honest, the Jason's parents would not approve of this article.
Sharona, December 2, 2019 5:55 AM
I agree with the above comment
I AGREE!
(2) Deborah Litwack, December 1, 2019 3:33 PM
great article
I'm a pediatric PT. It amazes me what special needs kids elicit from their parents. How most arise to the occasion and love the kids unequivocally and advocate for them. I'm in an out of homes every half hour; I can be patient that long! Kol ha kavod!
(1) Nancy, December 1, 2019 12:46 PM
I’m glad you got to spend quality time with Jason
And Ibwish I could have met him. Shavua Tov.