Is DD slipping away? what’s happening?? | Autism PDD

My 3 year old dd seems to be getting worse from one day to the next. I've posted before that the endless tantrums and screaming are back and less language and more nonsense words and recitation is going on. She had been doing really well before and making all sorts of progress in her speech therapy (still is I guess) but we seem to be in a rather dark period.

I am so scared that I'm losing her and it's getting worse (and also hoping it's just a 'phase" or 2-steps forward, one-step back thing) I don't know what's going on. She is totally withdrawn today and has been getting progressively so over the past week.

After her nap today, she was sitting on her potty chair and suddenly started moaning and crying and yelling "get off" over and over. I think she saw a bug or something not really sure. Anyway, after that she was insolable and would get right in my face and scream at the top of her lungs. She looks so angry when she does that. Then she started whimpering for her DIAPER (she normally wears underwear at home) and pajammas - this was in the afternoon right after her nap! It was so sudden, random, irrational, intense and severe. I couldn't for the life of me figure out any REASON for ANY of it. She also started in with her stress echolia which is soooo scary and heartbreaking to me (and yes, I did start crying. I don't know how to reel in all those emotions of despair and fear, etc. that rise right up when these episodes happen. Any tips there? I know it's distressing for her. I don't sob or anything but my eyes do tear up.) DO NT KIDS HAVE THESE TYPES OF MELTDOWNS OVER NOTHING?????I honestly don't know what's normal or not as dd is my only child. To me, it seems beyond the pale and very much NOT normal (by the intensity and severety and duration... and by the pit that sits in my stomach..........)

I didn't know what to do. I thought it couldn't hurt to let her wear those things if it would give her some comfort. It did and she settled down a bit and then got all agitated again asking for oatmeal (what she eats for breakfast every day). It was like she was really confused on what time it was or something. It was very strange, that's all I know, and really shook me. Now she's really withdrawn and won't really engage or talk or respond so I'm more freaked and had to come here to vent. Her neuro appt. is next week, so the wait is getting shorter but what do I do in these cases? Was I wrong to given into her requests (she did use words to ask for them after all)? I just couldn't face another 2 hours of crying and wailing over something so easy as wearing pjs. WHAT are these episodes about - does anyone know? Is it her way of coping with stress or releasing stress and frustration or what???? When it's a tantrum about safety issues like holding hands in parking lot or not getting a piece of candy or something like that, I hold firm and don't give in come what may. I am very consistent in that and emotions don't really come into it. But when it's these random, unknown meltdowns it's a whole other ballgame and she's in such distress........Any advice or insight would be greatly appreciated!

sallys,

I think that since your dd is only 3 years old, you are not wrong in giving in to her demands. It takes time and a lot of effort to teach our kids to cope with "Life". Melt downs are going to be frequent, and often, severe. When our kids tantrum, everything upsets them. As long as they're not injurous to themselves or others, it's okay to let them choose to eat oatmeal when it's not breakfast time, or stay in their pj's all day long. Some of the simplest things can set them off. Now is the time to document what was happening when she tantrumed so that you can learn what triggers the bad behavior. Once you know the triggers, you can learn what you can do to eliminate the triggers, or change the resulting behavior.

Hang in there-- Our kids really do improve over time.

Kim

Wow I don't know. Ds really doesn't say much of anything so I can't even relate to the nonsense talk. I guess I can't be of much help on this issue, but I just wanted to lend an ear and say I'm hear to listen. I hope things come together soon, as far as the doc appt giving you some information. I think once I get a diagnosis (if I do) that I will feel better. I do not know if what is going on w/ your dd is autism or not, but it does sound strange to me just reading it. It does sound like it could be due to the duration, severity, and it being so irrational. However I am no expert and I also don't know much about the other disorders or language disorders as far as other symptoms that can accompany them. If indeed she is getting confused on what she is doing and what time of day it is, that is pretty scarey. I would get just as upset as you. It's so hard feeling confused and helpless when we just want to help and protect our children. I really hope things improve for you soon.

Amber

Wow, thanks everyone for your kindness and support. I can't tell you what it means to me to be able to come here and be listened to. I did think in the beginning that dd was coming down with something, that was the first thing I thought when she started being "off" but as each day went by and no symptoms (runny nose, fever, etc. etc.) arose and the tantrums/etc. escalated I began to think it must be something else. It's been about a week now. Maybe she doesn't feel well but there is no obvious signs of illness (she would never TELL me she doesn't feel well - or at least hasn't yet).

I felt so bad leaving her at school today. I don't know why. I just picture her sitting off by herself or calling boys "she" or yelling "It's a brilly" and the blank looks on the other kids faces or laughing at her (These are all things I see everyday when I drop/pick her up, so I'm not just being morose here). Most days I think school is good, but today I'm thinking "I just left my ASD kid in a NT preschool to fend for herself." I guess I'm getting stuck on that label thing because I KNOW she's fine at school and even likes it. I guess that reality is sinking in further into my mind, body and soul - she is on the spectrum. Mildly, moderately, severely, autism, pdd-nos, I don't know, but she's there. (guess it's not asperger's because she has the language disorder/impairment).

I know the days will get better and I'll get better and I'll never let it impact her more than it has to...but somedays I just feel so sad and heartbroken for my little girl. And not knowing what the future will bring....but I guess no one really does, so you just have to go on. I just feel lost and sad today.

Sallys maybe she isnt feeling well? Maybe she is coming down with something...?

I know how sad you are feeling but cheer up it is probably a phase and yest sometimes the NT kids are completely irrational.

Hang in there sweetie, we are here for you

hi sallys , i doubt this will make u feel any better but my 2 1/2 year old neice was poorly recently but my sister didnt realise and she rang me up saying that her little girl was screaming and wanting pj's and nappy etc on even though not bed time. it turns out she was unwell and just wanted to be cosy and was screaming cause fed up with feeling poorley etc . i dont know if it helps but maybe she is unwell . i hope that is the reason and not her getting worse etc.

if u need to talk we are all here xxxxxxx

Dear Sallys,
My heart goes out to you.

I don't really have much to say for comfort other than something Michelle wrote to me once ... that sometimes as our child improve in one area, it's like their world is changing so they tend to act out in other areas. It's hard for our little ones on the spectrum to deal with change. I wish so much I could have the right words to help you. I know I'd be just as upset and worried as you. You're obviously a very wonderful and caring mother and I think you did the right thing by giving her what she wanted to bring her comfort. I'll keep you and your dd in my prayers and hope you have a much better day today.
Kellie

Have you read the book "The Out of Sync Child"? Here's an excerpt from the website that reminded a lot of what you describe about your daughter. I wonder if she has sensory integration dysfunction, which you can have along with other disorders, like ADHD and autism, or by itself. Maybe some attention to her sensory issues might be helpful. http://www.out-of-sync-child.com/

http://www.out-of-sync-child.com/examples.html

TOMMY HAS TACTILE DYSFUNCTION

Tommy is the only son of two adoring parents. They waited a long time before having a child and rejoiced in his arrival. But when they finally got him, they realized that they got a handful!

The day after he was born, his parents were told that he could not stay in the hospital nursery because his wailing disturbed the other infants. Once he arrived home, he rarely slept through the night. Although he nursed well and grew rapidly, he adamantly rejected the introduction of solid food and vigorously resisted being weaned. He was a very fussy baby.

Today, Tommy is a fussy three-year-old. He is crying because his shoes are two tight, his socks are too lumpy. He yanks them off and hurls them away.

To prevent a tantrum, his mother lets him wear bedroom slippers to school. She has learned that if it isn't shoes and socks that bother him, it's inevitably something else that will trip him up during the day.

His parents bend over backwards, but pleasing their healthy, attractive child is a challenge. Everything makes him miserable. He hates the playground, the beach, and the bathtub. He refuses to wear hats or mittens, even on the coldest days. Getting him to eat is a trial.

Arranging play dates with other children is a nightmare. Going to the barber shop is a disaster. Wherever they go, people turn away -- or stare.

His teacher reports that he avoids finger painting and other messy activities. He fidgets at story time and doesn't pay attention. He lashes out at his classmates for no apparent reason. He is, however, the world's best block builder -- as long as he isn't crowded.

Tommy's pediatrician tells his parents nothing is wrong with him, so they should stop worrying and just let him grow. His grandparents say he's spoiled and needs stricter disipline. Friends suggest going on a vacation without him.

Tommy's parents wonder if yielding to his whims is wise, but it's the only method that works. They are exhausted, frustrated, and stressed. They can't understand what makes him tick.

as for NT kids that age throwing tantrums over what seems to be nothing or something very picky.. yes it happens

In fact last night we had a throw yourself on the ground failing hands and feet with all the tears tantrum from my youngest (2 1/2) because we didn't walk directly to the pool but instead tried to take him upstairs to get dressed. Nothing would console him, even our assurances he was going to the pool, until we actually got him too the pool (though trying to get a suit on him while kicking and screaming wasn't pleasurable).

Hi sallys

I don't have any pearls of wisdom to give you, so sorry... but you ARE in my thoughts & PRAYERS!!

About the "Tommy" thing, ya know, Iwas alot like that!! Actually, I still am to a certain degree. I can't STAND for my socks to wrinkle, can't stnd for blankets to be wrinkled on my feet in bed, can't stand for my feet to be tight in my shoes...can't stand when I itch to any degree. My skin CRAWLS at night, especially if/when I'm exhausted ...which has been ALOT lately.

I've asked my Son's doc & my own doc if it could be possible that I had autism or tactile dysfunction, & was just never diagnosed as a child, but I'm treated like I WANT to have something wrong with me, & they just kinda look at me & say something like"Ummm, no...don't worry about it".

Linda ...aka MWN64 ...aka Tony'sMom

Amber