As the parent of an autistic adult, the last two months have been extraordinarily difficult.

[Ilsa]

My son's programs (dances, dinners, art recreation, music, etc) for recreation and socializing are all cancelled. Day programs are cancelled. Therapies he enjoyed are cancelled. Eating out in a restaurant - cancelled. Taking a trip: cancelled.

He cannot entertain himself by reading, etc. He doesn't like watching tv, just a few movies. He doesn't like competitive sports. It is difficult keeping him busy all day.

We've seen increases in undesirable behaviors, including hitting, property destruction, and self-injurious behaviors. Even his ABA therapist has to use Zoom to work with us and her clients. It's impossible to request more help right now.

We are fine, though. We are smart and use cognitive training and discipline on ourselves to deal with episodes because we have experience, training, and maturity. "Acceptance" is probably the better word to describe our emotions.

In the past though, suicidal talk in the household wasn't unheard of. We could get help for ourselves, but we weren't able to get help for our situation. Most people, after volunteering to help, were outta here after a few hours of trying to help. And on days when I felt physically bad with menopause symptoms it was worse. There were days when I wished Earth was hit by a giant asteroid to end it all.

All I ask is that people not judge the tragedy in Florida until they know what really happened, and I mean all of it, including the failures of the people around her, her neighbors, the school, the state. Most people cannot conceive of what the life is like, how consuming it is, until they've lived it, as a parent or foster parent, especially if aggression is involved, and especially now.

Peace.

[dawg day]

1. Hugs to you and your son.

I hope now the weather is getting better he can get outside. Covid isn't transmitted wildly outside. Maybe the activities will start being held outside in safe ways.

"Walk a mile in another's shoes"-- it's helpful too when someone like you explains it well and kindly.

[Ilsa]

2. The weather has been helpful and gorgeous.

He loves it outside, but I'm worried about summer if it is as hot as last year. It's possible we will be cooler because of less driving by everyone, but who knows?

[dawg day]

3. I love spring, but I've already got my first mosquito bites.

They love me. I'm like gourmet food to them.

I wish nature and I got along better! Nature is so restorative and spiritual... but then I hear that whine and know I'm going to be a pin-cushion again. An itchy pin cushion!

[Ilsa]

5. They love me too, but we haven't had

a problem with mosquitoes yet. I can barely see them here. In texas, I swear, they are twice as big. Seriously, though, I'll get a dozen bites while my spouse gets none.

[DeeDeeNY]

41. Your son sounds much like mine

Does he son like water? My son loved on warm summer days for us to turn on the hose and give him rags and towels so we could do a car wash in the driveway. It was cool and refreshing on hot days and killed a lot of time. Then we would drive him around in the car to dry it. We would do this every day.

[cyclonefence]

4. Thank you for speaking up

I think it's really important for parents of children with serious disabilities to speak out when these tragedies occur, not to excuse murder but to try make others understand how easy it is for parents (and in this case it sounds like she was a single parent) to become desperate without supports from the larger community.

I am afraid that we will be finding out about more deaths and mistreatment by parents driven to desperation when all supports for their children with disabilities--and supports for the families as well, such as respite services--are withheld over such a long period of time. My adult daughter lives in a group home with two other women, and while it's been tough not to visit in person, or to have them all over here to visit us, we've had it easy compared to the years when Sara was living at home.

There should be some kind of compassionate exception made for services provided to people with disabilities, with regular testing and appropriate safety measures taken, even if it is just a change of scenery. My child's day program center could be used for activities like dances or concerts or crafts, just to give clients something to break the boredom and families a chance to take a deep breath.

[Ilsa]

7. There's a group home for disabled adults

A few dozen miles from here. We used to see them regularly at church socials for the disabled. I've kept in touch with their rec coordinator to see how they are doing. So far, no COVID-19 exposures.

[kimbutgar]

39. My adult son lives in a group home

He used to go to a day program which is now shut. He is stuck in his room and FaceTimes us sometimes. We usually brought him home every other weekend but we’re toldvif we bring him home we can’t take him back. It’s been 6 weeks since he’s been in lockdown . We have social distance visited him the last two weeks but we’ve decided to bring him home. Now I will have to keep him entertained while he is home. He’s a 27 year old man with social emotional age of 7 years. Now I have to be mommy again and keep him entertained. His father and I are worried about his mental health stuck in his room all day, He keeps Himself entertained with his laptop and IPad.

One of the other clients who lives in his home is non verbal Young man was melting down while We were visiting our son on Saturday. I think he was upset our son had our visit and he hasn’t . I felt so sorry for him.

[JI7]

6. Is this the case of the woman that blamed it on Black Men ?

[Ilsa]

9. I don't know what you're referring to, so

I guess, "No."

[tblue37]

29. Yes, it is. nt

[Initech]

8. Hey I definitely feel for him.

We're all going restless and stir crazy because of this thing. I too have lost everything that brings me joy in life. I've lost nearly an entire year worth of concerts, two vacations (plus two future trips planned), I can't go visit my brothers or anyone in my immediate family. My parents lost their baseball season tickets. Also a lot of my favorite restaurants are either going under or struggling financially. It really fucking sucks.

[Ilsa]

11. But he doesn't understand the reason for having

All of his fun stuff taken away. He may have a sense that something beyond my control has changed, but I don't know for sure. Hence, the frequent outbreaks of hitting, throwing, breaking, biting others and himself, head-slapping, etc. Just imagine all the suckiness, and then add violence to the mix.

[Initech]

14. Man that does suck.

Eventually things will get better. We got to let these next few months play out and see what happens. I keep telling myself that.

[Ilsa]

19. Me too. Patience. Prayer. Planning, etc. nt

[Coventina]

10. As a caregiver for my mother who had dementia in her fifties while physically very strong

I almost never pass judgment on these folks.

That she tried to blame it on the mythical "evil black man" is contemptible, though.

[Ilsa]

26. Agreed. Blaming, and racist blaming show

where her thinking is, where her heart is.

[Shanti Mama]

12. You sound like such an amazing and caring parent

And this must be so hard for your son and all your family. I wish there was something we could do to help!
Thank you for trusting is with your feelings.

[Ilsa]

15. It took us years to get to this point.

So now, naturally, that we know what we're doing most of the time, we have to plan on the eventuality of him leaving to join a group home.

Thank you for the compliment. I used to get upset when people would tell me that God must have known we'd be good parents. We weren't. We didn't know a fucking thing about raising a child with autism, and I'm an RN, and my husband is a tech professional.

[Shanti Mama]

40. My kids are adopted and I hate the "they're so lucky" stuff

If they were so lucky, why did their birthmothers have to give them up????????
Personally, I very much doubt god had anything to do with it, but that's me.

Stay sane and carry on!

[Lulu KC]

42. A good group home is amazing

Message me if you would like to discuss. When guilt turned to knowing we’d done the right thing = group home.

[FreeState]

13. So sorry - I work in the field

If you feel comfortable let me know and I might be able to help. The company I work for is currently offering in clinic, in home, zoom groups and one on one ABA. All of our programs are up and running (with social distancing and the clients comfort level).

[Ilsa]

16. For now, I don't trust anyone else to come

into our home, and I have support from our ABA specialist every two weeks (severe case). My son won't stay tuned to a virtual group to exercise, dance, make music with, etc. He won't focus on that for more than a minute.

[Ilsa]

21. But thank you so much. Maybe there are others near

Your working group that can benefit from your assistance. Sometimes, just a kind word of support, to let them know they haven't been forgotten.

[FreeState]

31. Your welcome

And I completely understand - everyone’s comfort level is different and valid. Here’s to hoping solutions will be coming your way soon

[Hekate]

17. Ilsa, thank you so much for speaking out from hard experience...

I have been wondering the same thing, but it's so much more real coming from you. You are brave to talk about it with us.

Over the decades, as there has been a push to place all responsibility back in families -- first from a combination of political bean counters wanting to save money and compassionate people wanting to close institutions and replace them with adult group homes (which were then underfunded), and then from families themselves pushing to mainstream their children in schools -- I have wondered from time to time about the immense pressure on families, especially mothers.

Occasionally a case like this comes up, and I wonder all over again.

Thank you. All the best to you. Peace.

[Ilsa]

23. Hard experience indeed.

My life does not belong to me. Same with my spouse. Been this way for two and s half decades. We won't be enjoying a retirement filled with travel, etc. We save for taking care of our kids.

My antidepressants help. I actually need two very different drugs to keep me going, and a benzo to help me sleep through the night. I lived without drugs for years, then bam. My experiences have worn my neurotransmitters out.

[SKKY]

18. As the father of a son with Down Syndrome, I can empathize 100%...

...I hope we are not too much longer in this situation. I can see a difference from two months ago with my son and it's not particularly good.

[Ilsa]

20. I'm so sorry.

Have you found an online activity group for him? My son won't participate in that, but others are getting something out of online group activities.

[SKKY]

22. Yea, but it's not the same. My son responds well to face-to-face interaction...

...and he just hasn't responded well to the on-line environment he has available. He just doesn't seem as interested. But, we're working through some things, and hopefully we'll get him back on track soon. Kids like ours need routine, and things they can count on.

[Ilsa]

24. Yes, planning and routine have helped. nt

[Nitram]

25. I wish you and your son well. I have several autistic people in my family and know that it

takes a lot from everybody concerned to hold things together and keep moving forward.

[ismnotwasm]

27. I have an autistic grandson

I adore him. He adores me, but JFC he’s a lot of work, like almost constant. And it can be very intense. My daughter homeschools, so she’s with her kids all the time. She sets up lessons for him and he’s coming along, but the other day he got a hold of her phone and figured out how to call emergency services. All the dispatcher heard was a major meltdown as my daughter tried to get her phone back. Lots of cops showed up. No fun.

My daughter is so good and so is her husband, but an autistic child is challenging in the most profound sense of the word.

He’s awesome, I just love that kid, but I don’t have to care for him 24/7

[Books_Tea_Alone]

28. I teach children with severe autism. Their parents are among the true heroes

In this situation. I am in constant contact with the parents while trying to teach remotely. I honestly am in awe of what you are doing on a daily basis. Three of my parents have had Covid-19 while trying to manage their children with severe behaviors. Over the past week I can see some are at the breaking point..they ask me if our school will be open for July (not a chance) and I cannot even tell them that probably not September or October either. We are in NY/NJ area, closed in early March and still under quarantine and curfew. We are very far from schools opening. I do not know how the parents can handle the fact that we are not even halfway through as they have been home bound for almost three months. Most of my students are a flight risk, so outdoor activities are difficult.

You have my utmost respect.

[Ilsa]

33. At least I don't have to worry about

"elopement" any more. I really feel for those parents, too.

[delisen]

30. Thank you. n/t

[EndlessWire]

32. I notice you said he had a dance class.

Could a floor dance mat work for him? They are fairly cheap and they look entertaining.

Also, there is the traditional piano floor mat. You can go on Amazon and take a look!

The dance mats can have two dancers at once, and might provide an opportunity for him to have fun with another locked down person.

[Ilsa]

34. He loves his dance class, but he barely

Moves in it. I think he likes the music and social event part of it. So, many days, I ask Alexa to play those dance sonngs he's familiar with, like Cha-Cha-Slide, the Chicken Dance, YMCA, etc, and I take him through the motions on my kitchen floor!

[RainCaster]

35. My neighbor's son is on the spectrum, her life has been difficult

He is very low functioning and with all his routines disrupted, he has chosen to become very violent at times. The father has one of those jobs that keeps him away several days at a time for work. Then she is home alone with him and can't even go out in the yard to garden.

Both parents are dreading when puberty hits this kid. All walls in his room are padded, the furniture is bolted down.

When you think your life is a mess, look around, somebody else has it far worse.

[EndlessWire]

38. Yeah.

Lived next door to a nice married couple for many years. Wife died of cancer. He had been a house husband. After his wife died, it was apparent he was impaired in some way. He couldn't figure some easy things out The whole neighborhood tried to help him.

Came home from an appointment one day, and I discovered yellow tape and cops everywhere. Turns out that a relative was visiting him, and something she did set him off. He took a ball bat and beat her to death. Then he kept the body in his back yard. Explained why there was this gawd-awful odor coming from somewhere over that way. They took him away and gave him 26 to life. Autism is not a mitigating factor, although I think it should have been.

I have nothing but respect for those coping with this. Wish we understood it more.

[Rainbow Droid]

36. Respect to you. I simply can not imagine myself doing what you are doing. I mean, I literally

do not think I could physically or mentally do it for any significant length of time without completely losing my health and sanity. I've seen it up close. I have a good idea of how hard it is. It's one of the most mentally and physically debilitating long term challenges any human being can undertake, and I don't think even the strongest people can get through it undamaged, even if they have massive resources and a support network (and most do not).

The only thing I can think of that comes close are massive physical injuries that require lifestyle changes and long term PT, and even then I'd personally still rather deal with 3rd degree burns on 90% of my body than care for a violent autistic adult child for two or three decades.

So, yeah... Complete respect.

[meadowlander]

37. Does he have any indoor special interests he can go nuts with?

I'm on the spectrum and the lockdown has been hog heaven for me. No social demands, being stuck in environments I can't control and I get to bake, garden, write and draw floor plans every waking hour I'm not at work. The real challenge is going to be ever getting me out of the house again.

Does he like computer games? Can any of his regular programmes recommend anything? When I'm feeling really stressed Candy Crush type apps help a lot. Absorption in special interests is one way to manage challenging behaviours (I'm sure you know ). It's not like it needs to be education or enriching or anything. You're both just trying to get through the day.

As for the Florida situation, I can't imagine how difficult it is dealing with a person with high support needs 24/7 but I'm just not buying that there are any answers to "what really happened" that can excuse murdering a child. Certainly not "his disability made him really difficult to deal with", I hope we can all agree. She might not have been the only person that failed him, but she had options besides murder. She could have surrendered her parental rights to the state. There might not be good options in that situation, but there were better ones than ending his life. She chose not to use them and she should be held accountable for that.