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.