Developmental disorders/learning disabilities/genetic syndromes & more support group

[Reid]

Sorry everyone I know I am bypassing your replies but I just can't think straight right now I am so angry. Whilst waiting for a bus Thomas was babbling to me. A middle aged man then started making fun of Thomas by doing daffy duck impressions. I am so so angry that anyone can make fun of a child. I hope he falls under a bus. I will come back later and reply to posts I have to dp washing now

What a low life scumbag making fun of a little child really I hope he doesn't have any children or grandchildren. He must have felt like such a big man after that eh ....idiot
I hope thomas didn't relise what he was doing xx

 

[Tiff]

Oh Squeena.... massive hugs.

People just don't think before they speak. Did you call him out on it? I'm always torn between the fine line of educating and then realizing that there are some out there who just won't get it no matter how hard I try.

Karma will get him, it just sucks that chances are you won't be there to see it happen. I'd be LIVID as well. Massive hugs to you and Thomas.

 

[Starry Night]

sequeena - How horrible. You'd like to think that people outgrow being bullies but some never do.

Lately I've been thinking I'm going to have to make Taylor Swift's "Shake it Off" my new theme song. It's my passive aggressive way of mentally giving people the finger.

Thurinius - not sure it's very brave of me to go to music therapy. My son is in the preschool group and is probably the oldest one there. So in some ways he seemed to be the highest functioning kid in the room. He was just the most wander-y. One other boy started to speak with his mother so I felt a little relieved I didn't have the only verbal kid in the room. I was feeling a bit like a fraud. I think that kid even spoke better than my son. The only girl in the class broke my heart a little. She only sat there and stared and drooled. She wouldn't even pick up the toys or register the ones her parents had put into her hands. When my son started to bang on a toy she was holding her parents were eager to let him to do that and didn't want me to stop him. I realized they were happy to see another kid want to play with her.

I don't know how I'd feel seeing the older kids. I still like to tell myself that my son can become higher functioning some day.

He had his development assessment today and the various therapists said they were pleased with the bulk of his skills. He could draw lines and circles and tried to copy the face drawing the OT showed him. His gross motor skills were pretty good too though he did have some trouble understanding the directions for the various games until the therapist would show him how to do it -- he is quite visual.

He didnt comply for the hearing test (he hates having his ears messed with) so we have to go back in a month or two. And he had a really hard time transitioning between the various stations. We also couldn't get him to do a puzzle or use scissors. His first test was gross motor skills and while he passed the stairs test, he kept playing on them and was horsing around when he suddenly fell down. The therapist dove down in time to catch him before he hit is head on the floor. But he was quite shook up and threw a big fit/meltdown and it affected his other activities. He was mad enough that some full sentences came flying out -- the words come when he's motivated! "Open the door, I'm going now" was the big one. He shocked both me and the SLP (he's met her twice before now) with that one. Most of the time he has one or two word phrases.

Feeling sick today and only got through everything by downing a bottle of Pepto Bismal. Now am taking the pill form like it's candy. dH is probably going to have to take DS to the therapies on his own tomorrow.

 

[annanouska]

sequeena he sounded a dick. I do tend to make comment now.

I think diagnosis is hard but surly it's better than limbo. I'm sick of limbo, I second guess myself now wondering if I have imagined it all. I do question now he is not ASD or if so he is lesser affected. His communication is improving well but socially he interacts as a learn behaviour and laughs but doesn't properly play with other kids and is terrafied properly terrafied of children he doesn't know. He will,leave the park if a child comes in, he screams and cowers away if a child approaches him but adults don't worry him. We have had two terrifying things this week...l1 he wondered off in costco, he often goes to end of aisle and back to us but properly gone. We checked everywhere all the shed, in between things etc. he wA fwr end of the shop on a pink leather chair feet up he was not at all phased. Next he nearly got run over...just bolted he won't stop he won't hold hands nothing. I'm tying a its strap but he gets it off

 

[Starry Night]

anna - how terrifying. It's so scary when our kids wander off. I'm glad he was all right and unaware of how frightened you were. We use a harness/back-pack with a leash. Our son is pretty happy with it though so I don't know if it's fully escape-proof especially as we use a generic one you can find in a baby/toy store. I'm on a support site where people special order ones designed for older special needs kids.

And I agree that limbo is worse than diagnosis. We were only in true limbo for about a month or so and that was pure torture (when we were first referred I felt confident that the doctor was wrong so didn't worry about it). Is your son still in the process of being tested or is it one of those cases where the doctors can't make up their minds? I hope you get some answers soon.

 

[bumpin2012]

Annanouska, in sick of limbo as well. I'm tired of feeling like I'm failing him because I don't know how to teach him about interacting with other children. He's 3 next week, but the size of a 5 year old. Which makes others expect behavior of a 5 year old, even though developmentally, he's closer to 2.
We went to an indoor playground today. I left crying. There we're some older (like 5 ish) kids who were avoiding him. I overheard one call him stupid, but mostly "that weird boy" it hurt my mama heart to hear it. It never affected him, but I know one day it might.

 

[Thurinius]

Annanouska, in sick of limbo as well. I'm tired of feeling like I'm failing him because I don't know how to teach him about interacting with other children. He's 3 next week, but the size of a 5 year old. Which makes others expect behavior of a 5 year old, even though developmentally, he's closer to 2.
We went to an indoor playground today. I left crying. There we're some older (like 5 ish) kids who were avoiding him. I overheard one call him stupid, but mostly "that weird boy" it hurt my mama heart to hear it. It never affected him, but I know one day it might.

I know exactly how you feel. My four year old has no interest at the moment in making friends. He'll play with his little brother but other children he ignores.
I worry they'll come a time when he wants to make friends but won't be able to do it (he has difficultly reading social cues) and that'll upset him.

 

[Thurinius]

Screwed up my courage to attend a local group this morning for children with disabilities and their siblings.
I'd been shy to go to before, still in shock re my sun being autistic I didn't want to see any older asd children because I couldn't picture his future.
But you know what I had a great time and my kids loved it. And of the siblings attending I genuinely couldn't tell which was the one with the disability all I saw was a load of kids having fun.

 

[annanouska]

We go to a special needs group I love it, met some of the coolest kids ever there!

Marcus had a catch up with his salt...she deff thinks he is not ASD and to be honest I agree but feels he shares many of the same features, especial the social emotional issues and sensory issues. The neurologist said he may have some random genetic defect that causes it all. I find it icredibly hard to explain to somebody what's wrong. He has language disorder and I feel that's becoming more apparent he recites hide and seek where are u etc then just babbles off and can't put basic things together, then he has the epilepsy, the spd, the white matter changes on mri, his increased hyperactivity and lack of danger etc. if I just real off a list he sounds like a liability just wish I could say yes this is marcus he has some difficulties as he has green spotted frog syndrome but he's doing great!

 

[annanouska]

bumpin was meant to say your son sounds much like mine. Those comments are hurtful and mean. It's hard when they look w lot older. I do correct ppl of his age and advise developmentally he is younget x

 

[Starry Night]

bumpin - I'm sorry you had such a rough outing. When we first started taking our son to play-places (like at the mall) he was so shy and insecure and somehow became a bully-magnet. Each time it was a random selection of kids yet every time the 'mean' kid targeted my son. And my DS wouldn't catch on at first. He'd think it was a game until the other kid became so unrelenting and the violence increased. And of course the mean kid was the one with the mom on the phone.

But now my son is a lot more confident and even if he ignores the other kids he just does his own thing. The mean kids ignore him now because he pushes and hits back. He thinks that is how they play and it's all a game to him. His friend is starting to bully him though and it's hard. I think it might just be the age though (4ish). The mom is so apologetic and says her son is being that way to everyone right now. But my son still loves him. The bullying isn't violent. It's more the incessant teasing. It just hurts to see other kids noticing the differences. His friend's younger sister complained the other day that my son was ignoring her. When the kids a year younger can see the differences it's tough.

anna - it's interesting that your SLP thinks it is not ASD with your son. It sounds like he's similar to my son but we got the diagnosis. I find this all very confusing. What makes you think it's NOT autism?

afm - my son decided he didn't need a diaper for bed tonight. We'll see how that one goes. At least it's a positive step towards night-time potty training, right? Right???

 

[alibaba24]

Hi starry iv been reading your updates! I think its great he wants to go without a nappy at night time hope all else is well with DH

 

[alibaba24]

We go to a special needs group I love it, met some of the coolest kids ever there!

Marcus had a catch up with his salt...she deff thinks he is not ASD and to be honest I agree but feels he shares many of the same features, especial the social emotional issues and sensory issues. The neurologist said he may have some random genetic defect that causes it all. I find it icredibly hard to explain to somebody what's wrong. He has language disorder and I feel that's becoming more apparent he recites hide and seek where are u etc then just babbles off and can't put basic things together, then he has the epilepsy, the spd, the white matter changes on mri, his increased hyperactivity and lack of danger etc. if I just real off a list he sounds like a liability just wish I could say yes this is marcus he has some difficulties as he has green spotted frog syndrome but he's doing great!

my girl has a language disorder too its rough

 

[Starry Night]

He did it! I heard him go to the potty during the night and he was totally dry in the morning. I guess he had put his diaper back on during his night time potty trip because the diaper wasn't there anymore (he had left in in the bathroom before bed) but it was totally dry when we got up. I'm going to try sending him to bed without a diaper again tonight. I was nervous because he had tried taking his diaper off in the past but then would wet himself so I thought he wasn't physically ready to wake up when he had to go.

We have his second speech therapy appointment this morning. I had told the SLP that I wanted to focus more on conversational skills and expressing emotions as his labeling language is actually pretty decent. When he is motivated enough he can say what he wants or point things out. I would really like to have a conversation with him. We are also going to see if he is ready to work on annunciation. Even his scripting is hard to decipher and we usually have to translate him to others.

alibaba - DH is doing better accepting the diagnosis but is still very resistant to signing him up for any therapies. Very little is covered and the little that is will only be for a short time. I know we don't have much money but it doesn't change the fact DS NEEDS therapy. I think he thinks we can get away without therapy. So right now, unless it's free or very, very cheap I can't convince him to let me sign DS up. It's really stressing me out. My son seems to have a rather high functionality but in order to push him to have that independent life we have to help him. I feel like he has the chance to have everything but we're just sitting here and not doing anything and it is slipping away.

How is your little girl doing?

 

[alibaba24]

He did it! I heard him go to the potty during the night and he was totally dry in the morning. I guess he had put his diaper back on during his night time potty trip because the diaper wasn't there anymore (he had left in in the bathroom before bed) but it was totally dry when we got up. I'm going to try sending him to bed without a diaper again tonight. I was nervous because he had tried taking his diaper off in the past but then would wet himself so I thought he wasn't physically ready to wake up when he had to go.

We have his second speech therapy appointment this morning. I had told the SLP that I wanted to focus more on conversational skills and expressing emotions as his labeling language is actually pretty decent. When he is motivated enough he can say what he wants or point things out. I would really like to have a conversation with him. We are also going to see if he is ready to work on annunciation. Even his scripting is hard to decipher and we usually have to translate him to others.

alibaba - DH is doing better accepting the diagnosis but is still very resistant to signing him up for any therapies. Very little is covered and the little that is will only be for a short time. I know we don't have much money but it doesn't change the fact DS NEEDS therapy. I think he thinks we can get away without therapy. So right now, unless it's free or very, very cheap I can't convince him to let me sign DS up. It's really stressing me out. My son seems to have a rather high functionality but in order to push him to have that independent life we have to help him. I feel like he has the chance to have everything but we're just sitting here and not doing anything and it is slipping away.

How is your little girl doing?

brilliant!

I totally get why your frustrated as I am sure you have read over and over early support is paramount. it must feel your wasting time

I am sure in time he will come round to your way of thinking

 

[bumpin2012]

Thanks ladies

G doesn't have a clue that other kids avoid him, he thinks it's all a game, totally misses those social cues... It only bothered me to see. I did mention to the kids that he is only 2, and that's why he's not playing the way they think he should.

ASD is such a large spectrum, I assume that's why some kids are, and others are not. G doesn't fit the picture perfectly, but has many of the pieces. If be surprised if they say he's not on the spectrum.

 

[Starry Night]

I think that blindness can be a gift. At some point they should probably learn so they don't get suckered into bully traps (the classic invite the awkward kid to the popular kid party just so they can humiliate them) but for now, I want to preserve my son's innocence. He is happy to just be in the same room as other kids. He sometimes finds a "friend" in the play place. One time he was the rough kid with another kid, running around and screaming and knocking into each other. It was mutual so I let them but he did knock over another girl and I made him apologize.

One time, a group of kids surrounded him and started asking all these questions but he wouldn't answer, and a bigger kid said "he can't talk". I held my breath and expected the worst. But then the bigger kid started pointing things out and saying the word for it and asking my son to repeat it. Then he helped him up the slide and looked after him the rest of the time. Good people and kids are out there. I will never forget it.

The speech therapy went really well today. The SLP showed me this chart of how they rate skills. And of the more basic speech/communication skills he has them fairly-well mastered. She was also impressed with his pretend play. Made me glad I play with him so much and get into his space a little to get him to engage.

 

[RachA]

Starry Night-that's great about using the potty in the night.


In my experience when children are younger they are generally much more accepting of differences so don't make fun of those that are different in any way. I've not heard anyone commenting on Esther's lack of talking in a horrible way.

I do though have issues with her playing with friends. At school I think she's ok but u really feel that we are missing out of her making friends because I don't feel I can invite any one round for her to play with. She still plays along side others rather than with them so I'd be inviting someone round and E wouldnt actually play with them. I really don't know what to do.

 

[alibaba24]

rach does esther let you play with her?

 

[Starry Night]

Normally my son just does side-by-side play too so I was surprised at how interactive he was with the SLP the other day. We don't have people over a lot and yeah, I feel badly that he is largely ignoring his friends. They will bug him a bit to play then give up when it's clear he isn't responding. Yet they are all he will talk about for days afterwards. He is becoming more interactive with me, inviting me to come play with him outside and then inviting me into his games of soccer and whatnot. Maybe he is just more comfortable with adults?

Last night our son wet himself and had a MAJOR meltdown over it. He woke up crying just as I was going into the room to check on him. So we cleaned him up and put him in a diaper but in the morning his diaper was completely dry. So tonight we tried going diaper-free again and around midnight (I'm still up then anyways) I woke him up and brought him to the potty. He went and then I put him back to bed. I don't think he would have gotten up on his own. We'll see how the rest of the night goes. Finger's crossed!