Wow, sorry it's been so rough, Gewy. I hope your son feels better quickly.
Gewy - I hope your son is doing better today.
I really admire both the love and raw pragmatism of what you are going through and what you are doing. I hope you and your wife can get a brief respite but please know a lot of us are thinking of you and I wish there was more that could be done for you at our distance.
This is going to be kind of a rant but I just wanted to write down all the sh*t that been going on somewhere.
Well, it turns out that things don't get better as they get older. They seem to just get worse. My son who is almost 5 and still nonverbal has been doing just that. His behavior is getting out of control in ways that we just don't know how to deal with it at times. It's so hard to tell what's bothering him or what he wants because he can't do more than point or take what he want's. PECS books and expensive iPad apps have been a bust in terms of communication so where just left to guess on a daily basis.
It's really starting to take a toll on our marriage. We're both unbelievably stressed and try have give each other an hour to ourselves each day but it's not an hour spent together. One of us always has to be with him. He doesn't even want to sleep in his own bed anymore so gone are the days where we can at least watch TV together when he's asleep.
We can't even do normal things like take him out to eat because he won't last for more than 5 minutes without crying and screaming. We can't take the feeling of a thousand eyes staring at us so we simply don't go anymore. We can't even go to kid's birthday parties much anymore because he again doesn't last. If he hears a kid cry he starts to cry and want to leave, if the music is too loud he wants to walk right out. Kid's parties are pretty much too overwhelming for him. It doesn't mean that we don't still try but it just doesn't go well most of the time. We always try to expose him to new and different things outside his normal routine.
This weekend we drove 45 minutes to a friends house for a "Friendsgiving". We knew they had a swing and there would be a lot of kids his age there. Not 10 seconds after we walked through the door he started to scream and cry pulling our arms to go back out the door. When the kids there started to scream while they play (because that's what kids do) he started to cry even louder. We tried putting him on the swing (which he normally can stay at least an hour on) and take him for a ride on the bike for about an hour but he continues to scream and cry the entire time. So we decided to cut our losses 20 minutes after we got there and I would take him home alone while she stayed with her friends and catch a ride home. So here we are again doing things like we are separated.
I just feel like we are being forced to isolate ourselves from normal everyday life and it's f*cking depressing. Things are not getting better. They are getting worse for both my son and our marriage.
I just feel like we are being forced to isolate ourselves from normal everyday life and it's f*cking depressing. Things are not getting better. They are getting worse for both my son and our marriage.
Is there some sort of respite care in your area? It certainly sounds like you guys could use a break, and some time together away.
My son has mild autism. He undergoes 2x a week occupational therapy and once a week speech therapy.
Tempest wrote:I just feel like we are being forced to isolate ourselves from normal everyday life and it's f*cking depressing. Things are not getting better. They are getting worse for both my son and our marriage.
Is there some sort of respite care in your area? It certainly sounds like you guys could use a break, and some time together away.
Yes, there is. The city is actually paying for the respite. We are in the process of getting someone who has taken a required day-long class and fingerprints. It's just our hope that he is ok with the respite worker. I'm sure it will be rough at the start but may get easier over time. I think it will be worth it for everyone to just pull off the band-aid so to speak.
Both my kids are diagnosed. 15 hours of ABA, 2 hours OT, 2 hours speech per week each. Plus expensive therapy school. My older son is more moderate and the younger one is mild. For lack of proper description ABA helps with proper behavior and decreases negative behaviors.
Oldest son about a year ago would not go to bed. Would tear off his bedding, destroy anything in his room, scream for literally hours to the point that I would hide in the basement with headphones on. Worked with ABA team on a visual schedule and a number of trial and errors to get a routine down that he "got". Still has occasional bad nights but I don't feel my sanity slipping away.
Is the climbing and jumping new behavior?
Yeah the "can't have a kid conversation" thing kind of sucks. Progress for us has been getting a 1 word response to things like "how was school?" (usually good/bad/happy/sad) or "what did you do at school?" (usually play/draw/jump).
I've had this same conversation with a few kids about my son and I also felt pretty hopeless about the entire situation. The only difference is that my son is 5. We have playdates with kids a lot and all of them try to talk to him and talk and we always have to explain that he understands you but can't speak. I try everything I can to connect with him but he generally wants to do his own thing other than me spinning him in his spin disc chair or flipping him upside down. I try to read to him every day but he either doesn't want me to or makes me read 1-page over and over for 30 minutes. Like you, I would love to have a conversation with my son more than anything in the world but as days go by that is seemingly less and less likely.
Right now we are doing all the paperwork and preparation for kindergarten and we really have an impossible decision to make. Do we put in in regular common core kindergarten with neurotypical kids where he may flourish with kids thats try to engage him but will prolyl fail academically or, do we put him in a Special Education environment where he learns life lessons rather than reading and math but be with kids that have varying ranges of mental health issues?
All of this is just getting harder instead of easier as he gets older. He's such a sweet kid and it breaks my heart every day that he will not get the same opportunities as other kids. It makes us feel like failures as parents.
Man, gewy, I don't know how I would handle all that. Soul crushing.
I've had this same conversation with a few kids about my son and I also felt pretty hopeless about the entire situation. The only difference is that my son is 5. We have playdates with kids a lot and all of them try to talk to him and talk and we always have to explain that he understands you but can't speak. I try everything I can to connect with him but he generally wants to do his own thing other than me spinning him in his spin disc chair or flipping him upside down. I try to read to him every day but he either doesn't want me to or makes me read 1-page over and over for 30 minutes. Like you, I would love to have a conversation with my son more than anything in the world but as days go by that is seemingly less and less likely.
Right now we are doing all the paperwork and preparation for kindergarten and we really have an impossible decision to make. Do we put in in regular common core kindergarten with neurotypical kids where he may flourish with kids thats try to engage him but will prolyl fail academically or, do we put him in a Special Education environment where he learns life lessons rather than reading and math but be with kids that have varying ranges of mental health issues?
All of this is just getting harder instead of easier as he gets older. He's such a sweet kid and it breaks my heart every day that he will not get the same opportunities as other kids. It makes us feel like failures as parents.
My stepson's father is autistic and my stepson has shades of his father's social issues. Some of it could also be his mom's ADHD though. Tough to determine.
Anyway, if we had known how hard Kindergarten would be for him we would've held him back a year. It was awful. He's basically a year behind all of his peers when it comes to social awareness, understanding and maturity. He's smart and good looking, so he hasn't been subjected to bullying or anything, but if he wasn't attractive I'm almost certain he would have been bullied. He has issues with sitting still, making sounds and distractibility. He's in 4th grade now and has more or less settled in and isn't having quite as many issues in school as he was before. The first couple of years the teachers would use reward charts of some sort to reward the kids who had good behavior and every year he would basically be at the starting point while other kids lapped him for multiple rewards. He simply could not stop making noises and whatnot.
I don't have any answers for you, but knowing what I know now, an extra year of social, emotional, etc., development would've been a huge boon for my stepson. We would've had to pay for another year of preschool/daycare, which would've sucked obv, but he probably would've benefited from it more than being consistently feeling like a failure almost every day he went to school.
We were lucky with Tristan, in that he got diagnosed so young that he automatically qualified for preschool when he was 3 that was paid for through the county. He went through two years that would have probably been more beneficial had we not moved in the middle of it. So he started in one pre-school, then spent 6 months in his second, the full year in a third, and then started kindergarten at his fourth school. And then we moved back while he was in first grade, so he's now in his 5th school at 7 years old. But still, I'm sure he would have been way further behind had we waited to put him in school until kindergarten.
We go through periods where he doesn't talk much, and then periods where he is a little chatterbox. Our biggest issue right now is him being a bit lazy, not wanting to do his work in school, and I can't remember the last time he brought his homework home. My wife is on her way to their IEP meetings right now, and I'm sure she's going to get an ear full about missing homework, but holy hell is it a pain to keep getting on him every night when I know he's purposefully not bringing it home. It's a war of attrition that I've pretty much lost at this point.
I've posted in this thread a couple times, but don't think I ever quite laid out about my stepson like the above. So, naturally, today, we get this email from his main teacher:
Good afternoon. I'm writing to inform you that the last couple of weeks at school have been extremely difficult for T. He has been very disruptive, talkative, and hesitant to do his work. I plan on implementing a visual reminder/incentive plan to try to help him control these undesirable behaviors, but I will need your help at home to reinforce.I know we discussed some of my behavioral concerns at conferences in October, but the frequency and severity have increased significantly since our conversation. Between all three classes, we estimate that he's interrupting class about 7-10 times per day. Each time we have to redirect, we lose 2-3 minutes of instructional time, which is about 15-30 minutes lost per day. I broke it down for you this way not to make you feel bad or to make it seem like T is a "bad kid," but to illustrate to you that this is atypical of children of this age. In the first 20 minutes of school today, I had to remind him to stand up for the pledge, stop doodling during instruction, stop reading while I am teaching, and stop making vocalizations (rocket blasting off, horse neighing, and clicking) that distract other students.
Beside the interruptions that the teachers are struggling to manage, I want you to know that students have begun coming up to me and speaking with me privately about how his talking out is distracting them from their learning. T's interpersonal relationship skills are atypical for his age/grade. As the school year progresses and the kids mature, these behaviors could alienate him from his peers. None of us want to see that happen! We want him to have secure friendships and desirable behaviors in place before the transition to Lakeview.
I would like to speak with you in further detail about what we can do here at school to support T and help shape his behaviors into more positive, age appropriate ones. Please let me know if you prefer a phone conference or a face-to-face meeting, and then we'll look at dates that'll work for everyone.
Nothing here we haven't encountered before, but the timing is interesting and the use of "atypical" is a first.
We saw these types of behaviors in both of our kids. Sabastian is WAY worse than Tristan, but Tristan still shows the same type of symptoms even if the degree isn't as severe. Both are diagnosed with ADHD and are on fairly mild doses of Concerta that I give them in the morning. It's like having two different kids when they're on their meds. The impulse control gets far better, the blurting out every thought damn near stops, and they become far more focused. Off their meds it's like a madhouse around here, and I have almost no control over them. They work each other up, and can get into repeating loops to the point where they're shouting and it's like they have no control over it.
I was SUPER hesitant at first to put them on any kind of medication, because I didn't want a couple zombies in the house. I didn't want to think that I was just throwing a pill at the problem rather than working through it, and I didn't want to have to worry that I was... subduing their personality, if that makes sense. But looking back, it was definitely the right call. Tristan was a little different because it's almost impossible to try to determine whether or not an action is cause by being autistic, or ADHD, as the symptoms overlap quite a bit.
Just going to post a link that goes into the symptoms. If nothing else it might help you guys redirect some of the behaviors.
Yeah, my wife is ADD (or ADHD, not certain) so the overlap between her rapid cycling brain and her ex's autism is an incredibly tough nut to crack.
We're in the process of finding a therapist and will go that route first and let the counselor and GP influence our decision on whether or not to medicate.
Thanks for the reply!
Just reading through all of your experience makes me feel less alone in all of this madness. It makes me wonder if I will befit from a group of sorts once a month to vent and listen to people that are going through the same things we are. Our kids certainly go through a lot of therapy but sometimes I feel like I need some too.
I feel a little anxious posting sometimes because Tristan, for the most part, is pretty normal. Yeah, he has some odd mannerisms and we have our challenges, but overall we aren't really challenged as much as, well, probably the majority of parents with autistic children. Tristan has his issues, but they don't really hinder our day to day lives much. We've moved on to the more broader goals (school, long term self care, etc).
I did join a group at one point, but between my own social anxiety and really crappy work hours I never actually attended anything. Assuming your location under your name is accurate, you might want to check out some of the groups on meetup. I'll post the link below, but there seemed to be a good number of groups near you. Some are support groups, I saw one play date type group in there but it wasn't updated often (though they did just have a meetup a couple weeks back). You might find something that fits you guys in there.
https://www.meetup.com/topics/autism...
But beyond that, keep posting here. Don't let yourself fall into the trap of caregiver burnout.
I would agree with the “facilitated communication” hypothesis... the teacher may not even be aware that they’re doing it.
While I unfortunately can't recommend anything to directly Gewy, one of my best friends has a now adult child with special needs. I know from discussions with my friend that this has been a complex piece of setting up a financial trust for their family specifically because of the balancing act of providing income to that adult child who is limited in their ability to work a higher paying job against the pragmatic need to make sure they remain eligible for various assisted government healthcare support.
I would say many of the people / lawyers you'd reach out to put a trust in place will usually at least talk with you in an information setting (in my case at least there was no charge) so I could at least ask the questions that helped build a vocabulary to help me assess next steps.
Good luck
We’re only just getting to the same point Gewy. Mostly because of our last meeting with our son’s social services worker - RDSP (RRSP with extra Gov’t contributions), Gov’t sponsored disability bonds (something like a $1000 bond every year for up to 20yrs), a will for us (which would delineate a trust).
It feels very overwhelming, but we’re going to do our best
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