Autism thread

We can only get him to take liquid meds this way, but we lie him flat on his bed and give him 1-3 ml at a time and wait for him to swallow. I try to squirt the liquid down the side of his mouth so it doesn't gag him. We've found that if his head is even at a slight angle, like on a pillow, he'll easily be able to spit it out, but perfectly flat, it's difficult. I think he'd be able to spit it out if we put more volume in at once as well. Maybe other kids can spit it out even perfectly horizontal though, due to better oral motor skills.

We wound up taking our son to the ER last night because he's been crying and fussing and yelling nonstop. After 9 hours, the best answer we can come up with is walking pneumonia, since he tested positive for that particular bacteria's antibodies. It took intranasal sedation and 4 people wrestling him for the nurse to get the IV started. Then, my wife and I spent the next several hours physically stopping him from pulling it out, which was very draining and frustrating for all involved. They used the trick of putting diapers around his hands like makeshift boxing gloves, and this helped for a while until he started biting at them. Eventually he got so pooped he gave up and fell asleep. Of course he woke up again later when it was time for his IV antibiotics.

Anyway, needless to say, we looked on with great envy at the family across the hall whose kid just watched Ipad videos while his mom sat there and looked at her phone.

The ER doctor actually wanted to admit him to the hospital, because she wasn't convinced the walking pneumonia would account for some of the abnormal lab values. The thought of confining him to a hospital room while he was pacing and screaming and getting into things there and not sleeping was very distressing. I interrogated the doctor at length about what they would do there... further tests? Additional treatments? I told her they'd have to pull the IV out because it was only a matter of time until he took it out with his teeth. It sounds like the main thing is she wanted to observe him. She revealed that she sent a child out not too long ago and wasn't really sure what was going on with him and he died an hour after being discharged. I'm sure this influenced her decision. Turns out he had an infection of the heart tissue. Sounded like a rare, freak occurrence to me, and after speaking with my wife, we elected to take him home and monitor him here, where he's more comfortable.

I never thought I'd ever be the type of person to sign myself or a family member out of the hospital against medical advice. It was a bit of an agonizing decision and the doctor gave us this look like we were being derelict parents. I wish people would understand that he's not going to just sit there in the hospital room, watching TV. It would have been torture for everyone involved.

Anyway, he's still miserable and pacing and crying, but he's drinking and obviously in no imminent medical danger, so I'm sure they would have already discharged him by now even if he were admitted, so we made the right choice in my mind.

I just wish things were easier. And now I have done my unloading for the day.

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.

Thanks for the thoughts. Everything is status quo today. Wish he’d be getting better after two doses of the antibiotic, but the fact that he’s still drinking fluids and active (albeit miserable) confirms to me that hospitalization would have been useless.

Large bruise on his jaw is back... must have hit himself again some time this morning.

I think we’re in the home stretch for this illness finally, after 16 straight days. Last night my son started vomiting again and had diarrhea, so we were freaking out. But it’s gotten better today and he even ate a little bit.

Plus, I started with the nausea and vomiting myself so I’m pretty sure he just got a stomach virus in the ER or the pediatrician’s office. No need to worry about something more severe.

Ugh, I hate nausea. I might rather be in pain. Feel so bad for my son having to endure that.

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.

Sorry to hear all that Tempest. I can relate to a lot of it- the nonverbal, PECS and Ipad being a bust, limited time with spouse, feeling like things are just getting worse, in particular.

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.

My son has mild autism. He undergoes 2x a week occupational therapy and once a week speech therapy.

Coldstream wrote:
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.

Just wanted to mention this somewhere and I'm pretty sure everyone I know in real life (which isn't that many people to begin with) is tired of hearing about it and completely disinterested.

We are on the verge of having to remove all tables from our house since we can't figure out a way to deter our son from climbing and jumping around on them, grabbing ceiling fans and light bulbs, etc. We barely use them anyway, since it's not like we're having regular sit down meals and can't leave things like papers on them without them being scattered around and eaten.

Empty rooms seem so disheartening though.

Is the climbing and jumping new behavior?

It comes and goes, but has been worse lately. Also he’s getting taller and heavier and almost tipped over a table he was standing on.

Well, time for me to vent again.

Today, one of my wife's old friends from where we used to live was driving through town and briefly visited with her 7 year old grandson who went to the same developmental preschool my son did years ago. He was only slightly taken aback by my 9 year old son's antics of getting close to his face and poking his hair, but mostly unfazed by everything else, like the hand waving and random yells. While my wife and friend chatted, her grandson was asking me about some of the Lego sets I had displayed on the shelves in my office and he pointed out which ones he had built, and started talking about the latest Star Wars movie, etc. He asked what Lego sets my 9 year old son had built, and I explained to him that he couldn't build them.

"Oh, he can't follow the directions?" I explained that he can't follow the directions and he also can't read or talk. This kid thought about it briefly then innocently asked, "Is he still a baby?" For some reason, this really got to me and I almost broke down crying in front of this 7 year old kid with his grandmother nearby. Yes, my 9 year old son, who now weighs 100 pounds and is almost as tall as my mother-in-law, is basically still a baby and I am near certain he always will be.

I must admit, I briefly imagined what it would be like to have an actual conversation with my son, like I was having with this child. Generally, I don't indulge in this kind of thinking, because it's unproductive going through "what ifs?" and there are certainly people out there who have much bigger problems. Also I feel like maybe it's, I don't know, not fair to my son I guess, but it really smacked me right in the face this time and I couldn't avoid it. I'll probably be distraught about it for the rest of the day at least. It doesn't help that my wife was even more irritable with me than usual this morning due to chronic sleep deprivation and I was already stressed out about other, unrelated life stressors.

Also, we did wind up getting rid of one of the tables he kept standing on. At least he's ignoring the dining room table for now, possibly because it's always covered in laundry and other junk. I guess being messy and disorganized is good for something.

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.

Tempest wrote:

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:

Spoiler:
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.

https://www.nimh.nih.gov/health/publ...

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.