I have something that has bothered me for awhile. As I mentioned earlier, we had a major move last January. Our son came with us. He was 19 at the time of the move, has since turned 20. He does not have a visible disability, though most people close to us know that he had an IEP and was in the special ed program through high school.
He has not found a job (unemployment is over 8% in our new town) and he has not returned to school. We do not qualify for instate tuition until next January and the local schools do not have his program anyway.
He has worked hard and getting plugged into the support services he needs. It sometimes takes time to get the right doctors and counselors lined up.
I am feeling some judgement from family, the people that should know him best. Every time I talk with someone I am asked if he has found a job yet, if he is signed up for classes yet. I explain every time that he has spent his time going to doctor’s appointments and getting the services he needs.
I always thought I had fairly thick skin and allowed stuff to roll off more easily than other people. I am really getting tired of the same questions over and over. I am starting to question how well I really know my son and maybe he really is capable of going out and getting a well paying job without any skills or formal training and I just need to push him more.
Any ideas on how to respond to someone that asks for the 100th time if he has found a job yet, how many has he applied to, why haven’t they called him for an interview anyway? (well, um, he is 20 without any formal training, and the unemployment rate is 8%, school costs too much until January, and he likely wouldn’t do well in that school anyway because of the LD’s they all know about, and even if he gets called for an interview he needs to pass it. That is why getting him into Vocational Rehabilitation is important, they can help him get training and practice interview skills.)
And how come I have to explain the same thing over and over to well meaning people?
Ugh, that’s tough. We get the same type of questions a lot. I think people mean well. It’s EXPECTED that young people will go out and work. It’s the movie that runs through our brains! I respond differently, depending on my audience. Often, I will say that our son is stable, happy, and kind to others, so we are pleased. If people push at all, I go on to say, “His full-time job is staying sane.” That usually shuts them up. I’m sure your case is different, but that’s what works for me.
In most cases, I don’t think pushing works very well, but outsiders don’t get it.
Our chronically ill kiddo‘s full-time job is working with her med team to get and stay as healthy as she can. Anything more is gravy! It’s not the life she would have chosen nor what we would have chosen for her but she’s made delicious lemonade with the lemons she’s been handed.
Meditation has helped me let this kind of thing roll off my back more easily. Don’t doubt yourself in the face of people who don’t know your son or situation as well as you. Their questions have more to do with their own inner workings than what is best for your family.
In the case of family, I suggest firmly cutting off these questions. “We’re happy with Smedley’s progress. We’ll let you know when he gets a job or signs up for classes. How about those Cubs?” Repeat as necessary until they get the message. If you don’t want to talk about it, you shouldn’t talk about it.
Sadly, I have mostly quit hoping my extended family to understand or empathize with chronic illness—they just don’t get it and “gee, she looks great.” Over the many, many years, we get numb to the lack of support and are just glad for the terrific people our kids are.
Happily WE get it, their true friends get it, and celebrate what they can and do accomplish.
No. No. A thousand times no. Parents of nondisabled kids are experts (in their own minds) at parenting kids with disabilities. Parents of kids with disabilities get far too much unsolicited advice from people who don’t know what they’re talking about, and who are sure that if they had your kid, all problems would disappear because of their firm parenting.
The last thing we need is more condescending, uninformed advice.
Forgive me please. What I meant was asking someone who butts in, well, what would you do? in such a way that it makes them face the fact that they have no idea what they are talking about.
I know that all of you have worked so hard to grow your kids to be the best that they can be, against terrible obstacles. @bajamm, your post just reminded me of when I had a toddler, and childless people would complain in my presence about babies crying on an airplane. It made me want to say: well, what should they do? Throw the baby out of the plane? Put the baby on ice in the galley?
Yes, I have relatives who thought I was the worst mom in the world until they’ve had their own children and realized that kids DO have free will and exercise it! They’ve become much more pleasant persons.
They still think that those of us with chronic illness would be better if only we did x, y, or z, none of which would do anything good.
@bajamm I would say he is signing up for community college soon and leave it at that. If they push, tell them you have to wait for in-state tuition rate. I would tell family he is doing great and you are doing great. If they keep pushing for answers, say you don’t have a crystal ball and just take things one step at a time. Many students and youth in their 20’s take time to sort things through. Can he start doing some volunteering at some place that interests him that could give him some skills to then find a job? Depending on what is available with Vocational Rehab. Keep plugging away but if relatives keep asking questions, just keep deflecting. Maybe long pauses, change the subject. Or say “I have to go now…”
They have no idea what they’re talking about, but that doesn’t prevent them from giving you their useless or counterproductive ideas in a smug and condescending tone. They’re sure that if you did with your disabled child what they did with their nondisabled child, you’d get the same result they did, and it will make the parent of the disabled child want to throw these bigmouths out of a tenth story window.
As the parent of a child (now young man) with autism and another who was (and still is) a very difficult child, I would look the other parent (or adult) in the eye and say “when you have a child with _______, you learn to pick your battles, and THIS isn’t one of them”. Then I’d walk away, with my child.
Nah, it’s just not worth the energy! At this point, I just say my kids are doing great and change the subject. If they really cared, we could have a deeper discussion. But I don’t otherwise choose to spend the time and energy.
Am not as close to many of my sibs as a result. They honestly don’t get it and have selective amnesia that no, my kids haven’t magically been “cured” so they are now “normal.” Even when I’ve had honest conversations with them, they keep expecting me and our kids to somehow magically “get healthy.” I don’t bother any more—no point in it.
I never say “if you had a child with autism (or LD or etc), you’d know” because one thing I know is that every person with autism is different, let alone every parent of a child with autism. It’s a catchall diagnosis, like saying “my kid has hearing problems” - that could be like mine, fluid in the ears every once in a while, maybe they miss what the teacher says for a week or two. Or it could be like my friend’s son, completely deaf and on the list for a cochlear implant. Every waking moment of his day he is deaf, and his parents deal with it and help him deal with it.
I guess I’m lucky I am younger than many of my generation on both sides of my family. They’ve got “normal” kids who have run the gamut of less-than-successful lives. So if my kids have any issues, they might ask but I do have a snappy rejoinder like “yeah, he doesn’t have his license yet, but that means he hasn’t lost if for DUI” or “yeah, he hasn’t dated yet, but he hasn’t knocked anyone up either”.
Well-meaning people who butt in, yes I agree it’s fine to pawn them off. Unless they actually have an idea to help, or are close enough to you to understand, practice your smiling at them like they are a five year old who asks why they can’t go visit the moon. The five year old doesn’t get it, and neither will the well-meaning folks.
The only other comment is that if your child is happy and healthy, forget about employed or not. My oldest is a bit of a trial right now, but I have not heard him express suicidal thoughts since he was nine. Other than that, most of us are doing just great, even if we are unemployed and on the couch for a while.
We have Vocational Rehab in our back pocket for my DS '18 if college does not work out. We had to send him to a less prestigious less competitive local college because there were just too many concerning signs. Maybe what people say isolates us from some family members, but it draws us closer together as a nuclear family. He has been a 18 year project for us and people who see him once or twice a year really can ask “how is he doing?” and can answer “that’s great” or “hope everything works out”.
I work with a gal that has a suicidal sister, elderly parents, didn’t get married until 45 and has 3 adopted children from Russia. The two girls (now age 18 and 21) are doing OK; son is at a living away from home situation that is a good fit for his needs. The co-worker is retiring at 62 and I can see why - her family and kids have worn her out. Sister hasn’t expressed suicide for a number of years (the last time she took an OD of medication that had no antidote, so because her heart was strong she survived) and just was admitted yesterday as she now is suicidal again.
Many people, many not very well meaning either, can be very nasty. One does the best they can. Love the examples you gave @rhandco - many young people have so many opportunities and make bad choices. Parents of disabled kids have to parlay every opportunity and head off every threat to their child’s well being and development.
I’m another turning 62 year old mother of daughter with special needs.
Burnt out working full time 40 years.
Not sure if we’ve saved “enough” for retirement AND to provide for DD but can’t last much longer…
Last five years we’ve been able to find wonderful supported shared housing for our DD. Set her up for state programs, food stamps, supported employment, recreation, transportatipn, etc.
Massive effort but well worth it.
Yet, chronic medical conditions and a family history of suicide make me realize our time may not be as lengthy as we hope.
No standing still.
My son toured a furniture plant this morning. The company makes it a point to hire half their workforce from the disabled population. DS agreed to a tour but said he wasn’t ready to think about working yet.
Well, he liked it so much that he’s going to pursue a job there! He can work as little as four hours a week. A transportation service can give him rides - the factory is only 3 miles from his apartment.
He won’t earn enough to affect his SSI benefits, whew. DH and I are trying not to get our hopes up too much, but this would be so amazing!
He agreed to go up to our cabin with us this weekend - he hasn’t wanted to go for years.
That is fantastic news MLH! The company sounds amazing, I wonder if the owner’s family was affected by serious mental illness. All the best for your weekend, hope you have beautiful weather and fall colors.
