Your most frustrating thing to deal with | Autism PDD
I've got to say ... I'm the Queen of poop, and I am getting sick of it!
This is really one of the main things I think that is holding my child back. The GI appointment we just had on Friday, the doc told me that he seemed to be cleaned out. Well, tonight, he fell asleep and there was a poop explostion of enormous proportions. Let me put it this way, I threw away a pair of sweatpants and a beachtowel, and there are currently 2 cushion covers and my favorite blanket in the washing machine.
We talk all the time about the great things about our kiddos, which is great - but what is the ONE thing ... the ONE single thing you wish you could change or would magically improve overnight.
The screaming....I so wish the screaming would stop. My son is in a whiny phase and when things do not go his way (as they often don't when he's whining - I try to ignore it) he starts screaming. This is an activity reserved for home (I've never heard of him doing it at school yet thankfully), but it gets on my last nerve. Today it lasted for an hour (it used to last 2-3 hours when he was younger and without words). It's funny how other screaming children don't bother me (I work in a preschool), but my own kid can drive me crazy.
And yeah, today I threw away a pair of his underwear and shorts. Just couldn't handle today's "delivery."
I would love to change how my son HAS to have drinks given to him a certain way or he won't drink them. Example, milk has to be warm and mixed with vanilla Pediasure in a blue Platex sippy cup or it will not be drunk. Water or tea has to be from a clear glass with a bendy straw or again not happening.
DRIVES ME CRAZY!!!!
There seems to be no reason for him to not have better language after 14 years of DAILY speech therapy. His IQ on nonverbal IQ tests (where language is circumvented) is in the low 90's, which is certainly adequate (average). His hearing loss is only moderate and is corrected to a large extent by hearing aids. He is dx'd with PDD-NOS because of he good relatedness and the fact that he understands and recognizes emotions in others as well as himself. He can read, he can write, he can do math. He just cannot adequately talk. This frustrates him and is at the root of why he is so stressed and has tics. It also is at the root of his potential aggression. Meds control both the tics and the aggressive tendencies, but the worry that those may resurface is always there (and the fear is great due to his enormous size -- 6'2.5" and 300 lbs). And, because of his excessive size, he is simply not allowed to have even the tiniest or most involuntary aggressions. Example: This past week, I began a 4 day a week job. That means Jamie comes home to an empty house 4 days a week. My DH is home within an hour. When he comes home, Jamie is happy and occupied or napping. The school says he's GREAT in school. I see no issues later in the day that haven't been present all along (excessive talking, LOUDNESS, some minor non-compliance, immaturity, etc.) The problem is this. Apparently, he's been having "behaviors" on the bus that are involuntary and most likely caused by tics. For example, he mouths the seat in front of him. He lets out blood-curdling screeches. He laughs hysterically. Wed., he grabbed the matron's shoulder -- hard. I KNOW what this was. It was a tic -- he sometimes NEEDS to squeeze during a tic. The bus driver and matron made things worse by lecturing him on why he can't make noise and can't grab. So he tried harder to control himself, which resulted in more stress and more tic-like behavior. He got written up and they INSISTED that I lecture him in front of them. You can imagine how that went off! Anyway, my point is that if he had normal language, he could use talk therapy to address his stress, he could have communicated to the matron and driver that he was upset about coming home to an empty house, etc. But he can't, so he tics. I have a call in to the doctor to increase his before-bus meds. Thanks for letting me vent. NYM3 -- You have PLENTY of company in the torture arena! The thing causing the biggest problem right now is my son's obsession with the bus/automobiles. He tries to get into other peoples cars and if we pass a bus on the road he tries to unbuckle like he can just get out and get into the bus some how. It makes no sense to me but is causing a lot of problems for the last couple of weeks. Nicholas - I wish he had more friends. I worry that he will become a hermit who can't hold down a job or make friends and he'll live off junk food. That's not living - thats existing and I know he is capable of more. Lachlan - We are never sure what will set him off. the squealing and the full blown meltdowns are tough to handle. As he gets older he is harder to control physically. I feel a lot of his problems could be better addressed if he would just 'calm down'. The poop issue gets me too, but I know we'll get there eventually. Top of my list is is eating though. I am sure he is deficient in most things which contributes to his anger. Ah....vicious circles.
NY Mom, if Nicholas is having those kinds of bowel movements, the gfcf diet and some enzymes and probiotics and can help him immensely. I hate the frustration of her wanting her way all the time and debating ..which can go on for hours if I let her~I am too old for that!
The days she is way too quiet and zoney makes me sad and wondering where she is at and if she will ever just get stuck there:( OOPS! That is more than one thing..I will shut up now:) Andrew - The screaming. He is a huge screamer. The temper is totally out of control and I don't know what to do about it. Nikolas - communication. The bowel thing with him too, I guess those 2 are equal. Nikolas isn't as bad as your Nicholas. I upped the laxative daily dose and he's started pooping in his pullup again. Its a little soft but its normal and its daily. I'm happy with that for now, we'll tackle the toilet down the road. I feel we could get there if there was better communication. Thanks LeAnne. I think I'm just having a bit of the blues tonight. I'm in Orlando for the week on a business trip (IT conference). I'm sitting in a hotel room by myself relaxing with a book. Even got a pedicure after dinner. But I'm lonely and miss my family. I'm sure that to folks that never travel it might sound like heaven, and I have to admit that last night I enjoyed relaxing alone and going to bed early, but now I'm on night two and already bored and homesick with 3 more nights to go. It might not be so bad if I were anywhere else but Disney. (The conference is at the Dolphin where I'm staying.) Everywhere I go I see happy families with kids and I'm here by myself... Wow, I can so relate! Parker freaks if I put on the wrong Calliou! Some days he doesn't like any of them so you can't win. The thing that really bugs me is his tantruming and insistance on getting what he wants. Also the wanting to watch t.v. all the time. I'd also love to have a conversation with him, also that it not be about trucks, lol. I wish many things. These are just a couple. I love him dearly though. He is my sweet angel! NYmommy I so agree with you on the poop thing we have the opposite problem though neither of my kids poop and are on daily medication to help so when they do they do. Especially my youngest. My biggest grip with my oldest is behavior and pooping in his underwear. Plus the running away if you let go of his hand for two seconds. With my youngest it would be the screaming. The inability to be flexible. Who cares if someone doesn't want to continue to play star wars xbox for the 4th hour!!! Do something else kid!!! And not Legos----for the next 3 hours!! (star wars--of course) And my wonderful son-----please don't meltdown AGAIN because people don't want to do what YOU want to do!!!
Sorry to lose it, I was desperately trying to distract myself from the crying going on in the other room and unwisely touched the keyboard. It was like a Ouija Board experience...swear, I barely touched it and all this stuff came spouting forth! Aaaaaaaack - its the Exorcist. Kristy - apparently the margarita DID make its way to me! Am normal again! Oopsie, ya'll...sorry for the mommy tantrum. The most frustrating thing to me is, ironically, frustration. C gets very frustrated when he tries to do something and doesn't master it right away. This comes out at school too. He thinks if the teacher asks him a question that he is supposed to know the answer and gets frustrated / upset when he doesn't. We keep reinforcing that kids go to school to LEARN and they aren't expected to know it all already. Not sure if that is really sinking in yet... When he can't do something he'll say things like "I can't, I'm a loser, I'm a stupid boy."
And then to have his cry and whine and scream relentlessly because we put on the wrong Backyardigans movie. Right now - he is whining and complaining and crying non F***ING stop and I'm about to blow my top and scream at him. Autism SUCKS SUCKS SUCKS SUCKS. LeAnne, I empathize with you re: the "wrong" Backyardigans movie. We have 2 entire seasons of Justice League on DVD, plus at least 3 - 4 other JL DVDs. Probably around 30 - 40 episodes in total across all these DVDs. The boys will ask for a specific episode by giving me a random one sentence description of one part of a plotline under the assumption that I am intimately familiar with every detail from every episode and can immediately make the desired episode appear on the TV on the first try. Of course I'll put in the "wrong one" and my NT son will scream "that's the wrong one mommy" and then C will scream "I like this one, let's keep it on" and then they'll start fighting over which episode to watch. Then I get pissed and it spirals downhill from there quickly... Everyone's allowed - it's better to come hear and let everything spew than to let it all fester inside! For me, I think right now I would like ds to stop having an immediate negative reaction to things. It doesn't happen all the time - probably only less than 50% of the time - but it just makes me nuts. Sometimes, he will get upset and do this squealing type "NOO!" or just even a negative squeal/grunt (it's hard to explain) if I even step into the room and he wants to be alone. Or, if I ask him to do something. Or if I tell him we're going somewhere. Or if I tell him it's time to come inside/stop playing, etc. A lot of the time he is okay - or at least doesn't have the immediate negative reaction. But a lot of the time he does. I cannot figure out how to get him to use his words consistently to tell us how he feels. He is capable of it as he has done it several times. But, perhaps I'm interrupting at an inopportune moment. I just wish I knew! I'm doing a second one as well. Like someone else posted - he feels he should be in charge and get his way! Especially in going first. My dd will often just let him go first - but she shouldn't have to and I try to get in the way of that! [QUOTE=NYMommyof3]Awww ... kristy ... that's so sad![/QUOTE]
But the biggest thing is his pervasive fear of the floors in our home-he
scrambles from one piece of furniture to the next in a total panic. I have to
negotiate every room change--he begs to be carried over the floor everyday,
and I have to avert a total meltdown and not give in at the same time. He has
actually injured my back and neck a few times trying to climb up me in a
complete panic. It's hard to deal with. It's even harder to watch him so
overcome with anxiety.the physical aggression. All the hitting, punching, biting, headbutting,
kicking, grabbing, scratching, spitting that he does to people when he
doesn't get his way - ugh. It is what holds him back. It's why he doesn't
attend school. It's why he got kicked out of special olympics. It's why he is
disliked by most people in the community that have contact with him 
important but I always have to stay hypervigilant. I can say on the way to
the store that he has to stay by me and is not to talk to or touch strangers
and he says okay. Two minutes later in the store he will run up to
whatever adult grab their hand and invite them to a party (what party ?).
I do not understand. He actually is trying but I can see his anxiety
building when he holds himself back. And weiredly enough he is much
more likely to talk to a walking person than a standing one.? It is almost
like a strange complex tick brought on by a moving animated object.