Baila Kash
We needed a vacation. I mean really. It has been quite a year. No complaints and B”H much to be grateful for. Although quite a few of my family members got Covid, B”H no one was seriously ill, and except for an occasional krechts here and there, it is behind us. And, we made a chasuna. A beautiful, wonderful, if-more-than-usually-complicated, Covid chasuna. So no complaints – but it really was a stressful year on many counts. And we needed a vacation.
But you know how it is. Work. Home – and home includes Baruch, our wonderful, if-sometimes-challenging 19-year-old with Down syndrome. So here’s the rub. His married siblings are more than happy to host him for a few days. But – who? Raizel doesn’t even have enough room for her own kids to sleep. Tova has girls and nowhere but a couch for Baruch to sleep, and lives in a different city. In fact, they all live in a different city except for the newlyweds and Raizel, who has no room. The daughters-in-law are as happy as the daughters to host Baruch, but to get to school would be a long shleppy ride on intercity bus routes. And, it isn’t as if any of my sons have extra room either. Not an option. Ok. Raizel is usually happy to host Baruch despite the crowded conditions. Ah, but the buses from her house to Baruch’s yeshiva are impossible. No problem. My wonderful daughter-in-law, Shifra, usually drives in from out of town to get to work. Any time we have been away she drives a long circuitous route to pick Baruch up at Raizel’s and drop him off at his yeshiva – and keeps telling me it is nothing but it isn’t nothing and I know it. Still, usually Raizel is willing and Shifra is willing. But Raizel just got extra hours at work and can’t even see straight and Shifra is on bedrest. Hmmm….
Not an option.
So, forget it.
And then – joy of joys. Baruch comes home and look at what he brings. A note from the yeshiva. They are having a special program in the respite hotel next week Friday to Sunday. We just need to add Thursday at their respite hotel and bravo. A vacation!!
Oh, well; I also have to arrange to get off from work on Thursday (read: spend hours preparing work sheets to keep them busy while you are away). Get off from work on Sunday (different job, but they got a sub – whew!). Pre-record the class for Sunday night (another place – don’t ask). Pack Baruch’s things. (Baruch said we will do it together. Actually, he really is getting good at this. But you know how it is with DS. It only took twice as long.)
Oh – right- I have to write a note for the Rebbe and to the afternoon staff so they know what is happening on Sunday and when he is coming back home. I have to go to his doctor for the med list, work out the business with the suitcase on Sunday because it is a long walk from his yeshiva to the bus he takes to another bus to get home – not a great idea in the heat with a suitcase.
Ok check, check, check. And my wonderful son-in-law – the one who lives in the same city as we do – says ‘no problem, Ima, I will go to his yeshiva before afternoon seder and pick up the suitcase and bring it to your house on my way home’ (It is not on his way home – he is just nice).
Hmmm. One more thing. Baruch comes home by himself, but even though he has a key to the house, after being away for a few days there probably should be someone there to greet him. So my wonderful newest daughter-in-law, Perel, instead of going home after a LONG day at work, will come to our house and make dinner. My son will join her and Baruch will be welcomed by his newly-married brother and sister-in-law.
Perfect
Can I relax now?
Well no – Covid testing (I am vaccinated and my husband had Covid plus one shot, but still.) A few other minor details and off we go to RELAX.
So, there we are relaxing. A woman starts chatting. Somehow the subject of special needs comes up and I tell her I have a son with special needs.
Here we go……
She asks where he is in school.
I tell her. I could have fudged or changed the subject but I didn’t think it was such an invasive question. I was wrong.
Bless her little heart. “No one who goes there learns anything. They don’t advance one iota. They never get anywhere. The only place they go from there is to a mental institution. I know, because my cousin, the ONLY good person there – works there.
I am wondering if perhaps she might need some mental health support herself.
But I am trying to RELAX. So I stay pleasant. She asks how old Baruch is.
I tell her he is 19.
“He should get married. Very important for them to get married.”
I HATE it when anyone calls our kids THEM – they are individuals – but she didn’t read that article. She doesn’t speak English for starters and I am beginning to wonder if she knows how to read at all.
Then she asks another one of my all-time favorite questions. “What does he have?”
I tell her Down syndrome.
I am waiting for either:
1) How old were you when he was born?
2) Is he your youngest?
3) Did you know when you were pregnant?
4) Oh, I have a friend whose sister has a neighbor who has a kid with DS who speaks 47 languages and owns three hi-tech companies.
She doesn’t say any of those things but it’s ok because I have heard them before already. So have you, right?
She says: “OH, Down syndrome. HE CAN’T get married!!!!!”
Well, thank you, young lady – young enough to be one of my (younger) children – for your expert advice. I think I’m going to go stretch my legs now and RELAX.
All of this was really quite serendipitous because dear Sarah Sander asked me to write an article and I had nothing to say. Now I do.
But you know – it all evened out. Because I came home and Baruch was fine. Everything went smoothly. Well, almost – his suitcase – the one my son-in-law picked up – well he couldn’t pick it up because they accidently left all of the suitcases from all of the bochurim who were in respite that Shabbos — in the van. And the person in charge of afternoon program called me to tell me that Baruch thinks that he is going home but he is supposed to go to his sister. Right? Wrong. Baruch is right – and you are wrong. Glad you called.
RELAX.
We worked that one out. Don’t you usually come home from vacation, after several frantic phone calls, via the house of the driver of the van? I do, apparently.
Ok, all good. We did have a nice vacation.
I was thinking about advice. Maybe we should all just keep quiet.
Then two days later I was walking out of a building and saw a fellow DS mom coming out of the same building. We hadn’t seen each other in ages and she didn’t notice me, so I didn’t say anything. As I was walking home she drove by and pulled over to offer me a ride. “I am so sorry. I was thinking about something and only later realized it was you. SO happy to be able to give you a lift.”
We caught up – how is your daughter how is your son. She stopped in front of my building and we chatted about the realities of young adult kids with Down syndrome; the joys and the challenges. Then she apologized again for not noticing me. I told her I figured she didn’t recognize me. That’s really what I thought. “NOT RECOGNIZE YOU?? Your advice picked me up off the floor!!!!!!!”
Oh.
I remembered she had a hard time when her daughter was born. I guess I gave her some advice. Don’t really remember what I said.
So I guess there is advice… and there is advice.