autism becoming less

[pinkpolkadot]

Hi Starry Night

Yes that is how our HV described it (she is really nice and very knowledgable as I know HVs can be a bit of a mixed bag haha!), she said that a lot of it is normal toddler stuff but the screening questionnaire was age dependent so takes into account if a child maybe would have been expected to have outgrown a particular phase etc....

Things like the echolalia seem to be getting much worse rather than better and her speech is very good (school say 'ahead' age wise) so I don't think it is down to speech delay, more down to repetitive behaviours.

Good luck for tomorrow morning, I hope you get some cooperation

I am not sure how DD will get on as sometimes she seems so 'normal', I worry if they will see what we see. I have been taking some pics and vids in case we are struggling to describe anything!

 

[alibaba24]

starry night keep us posted on how it goes for you this morning. I totally get that when you see this difference. with my daughter its so very subtle i can barely put my finger on it the way she talks I think makes her seem very babyish . I often wonder if her language was what it should be then You wouldnt be able to pick her out from a bunch of preschoolers. its just so hard trying to seek answers and analyze your child.

I used to run in circles trying to make myself dizzy too... because it was awesome fun! how do you know if this is stimming or a kid having fun?!

time for a cuppa

 

[pinkpolkadot]

starry night keep us posted on how it goes for you this morning. I totally get that when you see this difference. with my daughter its so very subtle i can barely put my finger on it the way she talks I think makes her seem very babyish . I often wonder if her language was what it should be then You wouldnt be able to pick her out from a bunch of preschoolers. its just so hard trying to seek answers and analyze your child.

I used to run in circles trying to make myself dizzy too... because it was awesome fun! how do you know if this is stimming or a kid having fun?!

time for a cuppa

Yes it is hard to put my finger on it exactly too. I was speaking to the pastor at the church playgroup the other day who knows nothing of her referral and he described her as "odd" (he is not very tactful but I don't mind, he means well!)

The stimming thing, yes I know what you mean, before, I would have just passed it off as excitement but now it has been flagged up I am looking at it in a different light, it could just be a matter of perception of course, it's a very powerful thing. It's funny how I kind of look at her quirks differently now even though she is my same lovely LO, I know this will pass but it worries me how others will look at her if she is labelled. Does anyone else worry about that?

 

[alibaba24]

starry night keep us posted on how it goes for you this morning. I totally get that when you see this difference. with my daughter its so very subtle i can barely put my finger on it the way she talks I think makes her seem very babyish . I often wonder if her language was what it should be then You wouldnt be able to pick her out from a bunch of preschoolers. its just so hard trying to seek answers and analyze your child.

I used to run in circles trying to make myself dizzy too... because it was awesome fun! how do you know if this is stimming or a kid having fun?!

time for a cuppa

Yes it is hard to put my finger on it exactly too. I was speaking to the pastor at the church playgroup the other day who knows nothing of her referral and he described her as "odd" (he is not very tactful but I don't mind, he means well!)

The stimming thing, yes I know what you mean, before, I would have just passed it off as excitement but now it has been flagged up I am looking at it in a different light, it could just be a matter of perception of course, it's a very powerful thing. It's funny how I kind of look at her quirks differently now even though she is my same lovely LO, I know this will pass but it worries me how others will look at her if she is labelled. Does anyone else worry about that?

the odd comment I know it was completely tactless but still a little bit funny lol! Yeah of course I worry about how others percieve my daughter. She has no obvious signs of asd shes very sociable friendly and chatty but I do worry about how others view her lack of language , I so would just love to wrap her in cotton wool and keep her with me all the time .
I do know what you mean one minute your looking at your child and they are perfect to you the next your looking at them with a gut wrenching feeling because you are now seeing things other people think is not right. Its a difficult thought to process but the best thing is to remind yourself she is still the exact same little girl

as for the label . You don't have to broadcast it its entirely up to you who you tell. For me personally If my DD gets the label I won't be shouting it from the rooftops but if it comes up then I would never deny it. Kids are really quite oblivious to other kids issues I have noticed. Unless It is something really very obvious but even then kids are just so accepting. they don't think like adults thank goodness

you always get playground bullies that is not avoidable but any kid is just as likely to get bullied as the next I was bullied myself and I have no condition x

 

[pinkpolkadot]

Yes it was rather funny and yes she is a bit odd there is no denying it, though I think I prefer 'quirky'

I think I am worried about how others will treat her differently, but yes you are right there is no need to necessarily broadcast her label.

I do worry about bullying too, kids do tend to pick on any little difference and I have seen 2 of her friends 'ganging up' on her already telling her she smells like poo which may or may not have been related to her pooing in her pull up still

 

[alibaba24]

Yes it was rather funny and yes she is a bit odd there is no denying it, though I think I prefer 'quirky'

I think I am worried about how others will treat her differently, but yes you are right there is no need to necessarily broadcast her label.

I do worry about bullying too, kids do tend to pick on any little difference and I have seen 2 of her friends 'ganging up' on her already telling her she smells like poo which may or may not have been related to her pooing in her pull up still

aw no thats awful. if it makes you feel any better some kids at my girls pre school have been very rude about my LO telling their mother she is naughty. another one said "Hi smelly Rosalie!" luckily my LO wasnt paying attention . at the time i dont even think she would have picked up on the insult tbh. she would now though. I wondered though because the girl who said to her with has a name (i wont mention it) that ryhmes with smelly so i wonder if someone has said to her. sadly though although it feels like a knife through the heart it is just one of those horrible things in life we need to deal with x

 

[alibaba24]

hope everything went well today starry

 

[Starry Night]

Well....that was, um.....interesting. Good luck dissecting my child, professionals!!

The "real" DS that I know and love showed up today but man, does that child ever send mixed signals. The examiner even at one point said, "Well, that's interesting...I..." then she cut herself off, probably because she's not supposed to make any diagnostic-like comments. But I could tell he was surprising her.

As soon as we got into the room, he ran to the circle of toys, picked up a toy plate and brought it to his mouth and went "Nom! Nom! Nom!" and then he threw it down. I think the examiner missed that though because she was still setting up. He became fixated on a pop-up toy and she asked if we had one at home. I said that we did but he mostly played with a small set of action figures. He also kept running off and trying to climb the furniture and reach some teddy bears on a high shelf. While playing, she called his name and he responded right away on the first time. Then she moved to another part of the room and he ignored her until she shouted his name. Then she tried to get his attention to an object behind her, telling him to look. He kept looking around the room with a confused look on his face. He kept asking "What?"

The imagination part of the test went really well. He played along with the games. He even went along pretending that a cylinder block was first a cup to drink from and then an airplane at the examiner's suggestion. There were other times he knew to ask for something and other times he needed to be prompted.

For the dolly birthday party he had to be prompted into pretending but he then went along with it for the most part. He did keep trying to steal the doll from the examiner. "Gimme back my baby!" he kept shouting. He also tried to eat the play-doh cake. He also started to cry and get upset when the examiner sang "Happy Birthday". He hates others' singing, I guess.

He did display some reptitive behaviour that the examiner picked up on. He has this fedora hat that he wears EVERYWHERE. He can't do anything without it. For the past few weeks he likes to take it off and punch out the inside. He did it a lot during the test--mostly when he was excited and when he was quite upset.

But yeah, just as confused as ever. So, good luck to the professionals going over the assessment results. We see the doctor again on the 19th.

 

[alibaba24]

haha there must be something with happy birthday my daughter didnt enjoy it on her 4th birthday was fine on her 5th but probably wasnt loving it.

well it sounds like it went pretty good though! so glad you dont have to wait a long time either only the 19th

how do you feel

 

[pinkpolkadot]

Glad you don't have to wait too long Starry Night. Did you have much involvement today or do you just have to watch?

 

[Starry Night]

I was supposed to just watch but he wasn't staying at the table so I had to sit there with him in my lap.

Not sure how I feel about everything. I had been worried we were dealing with a learning disability of some kind and then they threw the "autism" word at me yet he isn't really fitting that box either.

 

[alibaba24]

I was supposed to just watch but he wasn't staying at the table so I had to sit there with him in my lap.

Not sure how I feel about everything. I had been worried we were dealing with a learning disability of some kind and then they threw the "autism" word at me yet he isn't really fitting that box either.

I hate saying this but the word disability scares me for some reason It sounds like something I Can't handle which sounds so silly as I know clearly my daughter has something that is going to be considered a disability. but shes just so ...not? I dunno. theres so many amazing people out there classes as disabled . or less abled even i am unsure of the correct term.

all your feelings get thrown into a fan is how i have been feeling.

Iv been spending a good hour yet again going over my daughters baby/toddler videos. I have decided to stop beating myself up over the fact that I never picked the issues up sooner. her eye contact and facial expression has always been good. shes always been interactive. yeah somtimes she would ignore u in favour of the tv but tell me a child who has not done that? theres videos of her pointing and saying "whats that?" age 2. singing twinkle twinkle to me age 3 very engaged and happy.

I honestly feel my doctor watching them would be more useful to her than me trying to descirbe her on paper as it just seems all wrong when I put it into words.

urgh. app is at 9.15 am thank goodness no waiting around .

will update tomorrow x

 

[Starry Night]

I sort of feel the same way. "Disability" is so scary. In my mind, that word makes me think of a barely functional person who needs their parents for everything until the parents die and then....what? My aunt is mentally handicapped and my grandma is almost senile yet still is responsible for her (my mom helps out a lot though). So I do know what disability CAN look like. It's something I've feared ever since he was born since the pregnancy with him was so complicated and I had issues with the placenta and the blood flow to the placenta was partially cut-off. then he lost some oxygen during birth and we almost lost him. I've been so paranoid about any potential brain damage. I also had an extremely high fever during the first trimester with him.

No one wants anything to be wrong with their babies. I never wanted to be one of those parents who had crazy expectations of what or who my child should be but I did expect he'd grow up, move on and fly into the world. Now even that minor expectation feels taken from me. It hurts.

But he's still my miracle baby. He went through a lot just to get into this world. One day at a time.

Thinking of you!!

 

[alibaba24]

I sort of feel the same way. "Disability" is so scary. In my mind, that word makes me think of a barely functional person who needs their parents for everything until the parents die and then....what? My aunt is mentally handicapped and my grandma is almost senile yet still is responsible for her (my mom helps out a lot though). So I do know what disability CAN look like. It's something I've feared ever since he was born since the pregnancy with him was so complicated and I had issues with the placenta and the blood flow to the placenta was partially cut-off. then he lost some oxygen during birth and we almost lost him. I've been so paranoid about any potential brain damage. I also had an extremely high fever during the first trimester with him.

No one wants anything to be wrong with their babies. I never wanted to be one of those parents who had crazy expectations of what or who my child should be but I did expect he'd grow up, move on and fly into the world. Now even that minor expectation feels taken from me. It hurts.

But he's still my miracle baby. He went through a lot just to get into this world. One day at a time.

Thinking of you!!

placental problems here too. born early due to IUGR 3lb at birth. poor blood flow to the placenta I often wonder if this has given her some brain damage too.


also I have the same fears and that is what does the future hold is going to be ok when im gone . I keep reminding myself she is a gift from God and he has it covered. Its easy to forget though but they are still so young and have their whole lives to learn x

 

[Starry Night]

Exactly. Only He knows what is in store for them and He will be with them just as He is with us. And you're right, they're quite young still. There is still loads of potential in our children. And maybe us too.

 

[pinkpolkadot]

I hope it goes well tomorrow alibaba, will be looking out for your update. Don't feel bad about not spotting anything, for what it's worth we have always thought there was something a little different but every time we have brought it people reassure us saying it's normal toddler stuff and so we have put it aside.

Starry Night, what you sat about the future really strikes a chord with me too

 

[Starry Night]

I'm still thinking there is a good chance he'll get an ASD diagnosis but now I think the chances of him NOT getting one is higher. I could be misinterpreting things though. Only 8 more days. Yeesh.

 

[alibaba24]

well our review went as well As can be expected.

DD was truly great she impressed both the peadatrican and the nurse.

we went in and the nurse took her off to play whilst me and the doctor spoke.

we went over the up to date information and both agreed she has made significant progress. she asked me a few more questions that she couldnt get answered on her griffith asessement. she noticed how much DD had matured and how her attention skills had improved just by observing her briefly while talking to me and DD was with the nurse.

we discussed doing some genetics testing which I have agreed to. both mine and the nursery scores came back low for autism questionaire.

with all the evidence and DD's social awareness etc the peaditrician is not going to take the autism testing further at this point as she believes it is unlikely she is on the autistic spectrum. She said to keep an open mind But it is definately on the back burner for now and she will be reviewed again in 6 months time .

still kind of feel without answers but things could go on like this for some time. I think its become very clear though that her issues have came from poor receptive language rather than asd.

My head is kind of whirring theres a couple of things i forgot to ask how typical!

so yeah thats about it really

I have not processed any thoughts yet I know I should be feeling really happy but its still no not clear cut. Doctor said if she were to get a future diagnosis of asd she would be very high functioning previously titled aspergers.

as I was coming out there was another little boy and his parents waiting to go in and when the nurse asked if he wanted to go play with some toys he got very upset my heart really went out to him and his parents because these appoitments they just arent fun and such a worry for the parents.

It made me even more thankful for my LO x

 

[pinkpolkadot]

I'm so glad it went well, it sounds really positive for you

 

[Starry Night]

That sounds like a terrific review. And I'm glad they're not in a rush to slap on a diagnosis. It does seem frustrating that there are still questions and tests to be done. But it sounds like your daughter has every chance to "catch up".