First step on road - toddler autism <update page 4>

[Twinminator]

Could be christmas, could be a tad under the weather...? Lolly was unbearably agitated/aggressive/itchy-footed when she was under the weather a few weeks back. (thank goodness her sister just hugs her teddy and lounges on the sofa in the same condition!!!! ) xxx

 

[Midnight_Fairy]

Could be christmas, could be a tad under the weather...? Lolly was unbearably agitated/aggressive/itchy-footed when she was under the weather a few weeks back. (thank goodness her sister just hugs her teddy and lounges on the sofa in the same condition!!!! ) xxx

Oh I totally know what you mean. My other daughter is so laid back bless her. She is used to him LOL x

 

[stresshead]

hi im fairly new to this site and popped over from another forum to have a nose.I have a 7yr old daughter who was diagnosed with high functioning autism a year ago.I started asking for help when she was 2 as i started noticing her development was a lot slower than her younger sisters.Her 1yr old sister was talking yet tanisha at 2 wasnt,also she would rarely interact with other kids and didnt seem in control of her own emotions.I spoke to my health visitor(actually i spoke to several) and wwas told she was fine as she could sing word perfect.When she started playschool she had i.e.p's and every 6 weeks would have meetings with senco.Also the playschool got the ball rolling with speech therapy.Then when she started primary it all stopped apart from the i.e.p's,i was so confused.It was only when i spoke to her year 2 teacher that we both agreed that she needed to be referred to our local cdc centre where after 2 assessments and a class obs we got her diagnosis.My only struggle so far is finding mums with girls on the spectrum,everyone i know has boys.To be honest i would recommend exactly what every-one else has regarding sites to go on.With regards to managing day to day(especially if you have other kids) routine will be your best friend along with as much pre-warning as poss.I used to sit down with tanisha and tell her in as much detail as poss what was going to happen thru out the day as surprises were a no-no and this was all before we got her dg.If you dd finds it easier you can use picture cards to explain,you could maybe ask your h/v if she can get hold of any.I know its hard and can make you feel isolated,frustrated,angry etc but your not alone,i found sites like this fantastic as every-one knows what you are going thru.xx

 

[Twinminator]

Thanks stresshead, that's really helpful. Lauren's had a really good weekend and it made me think I'm imagining everything, but while we were away, she struggled with the routine changes and is obviously more comfortable at home where everything's familiar, nap time is regular and in her own cot, etc etc etc. I didn't think much of it and I didn't even really notice myself doing it, but I have to say "bumbum" and "nappy" to her several times now before I take her out of the room to change her nappy, because if she's just whisked off, no matter how playfully or lovingly, she goes mad.

When I go to see the paediatrician with her in a few weeks time, I want to be able to take a list of her recent behaviours/events to cover in as little time as possible all the things she may not have time to exhibit during the assessment. But it's hard because sometimes as a mother you take things for granted (as well as seeing things others don't see on the flipside of that).
So thanks again, it's useful to read others' experiences as it triggers my brain to remember what to put in my list! xxx

 

[Midnight_Fairy]

Glad you had a good weekend x

 

[stresshead]

hi again just wanted to reply about your list you want to make.You could include things to do with eating i.e. certain textures she wont tolerate,clothing i.e is she fussy about trousers touching her hips(my dd is) or certain fabrics,routine changes,does she have obsessions with certain toys i.e stacking blocks over and over or lining things up(stickers was my dd's thing),loud noises,busy crowds.I know its a lot to think about but any-thing you know she reacts differently to compared to her sister write down.Dont ever be afraid to be pushy or really firm,you know your daughter best.xx

 

[Twinminator]

hi again just wanted to reply about your list you want to make.You could include things to do with eating i.e. certain textures she wont tolerate,clothing i.e is she fussy about trousers touching her hips(my dd is) or certain fabrics,routine changes,does she have obsessions with certain toys i.e stacking blocks over and over or lining things up(stickers was my dd's thing),loud noises,busy crowds.I know its a lot to think about but any-thing you know she reacts differently to compared to her sister write down.Dont ever be afraid to be pushy or really firm,you know your daughter best.xx

Thank you hun xxxx
(I can think of something for each and every one of those categories by the way!!! )

 

[Midnight_Fairy]

hi again just wanted to reply about your list you want to make.You could include things to do with eating i.e. certain textures she wont tolerate,clothing i.e is she fussy about trousers touching her hips(my dd is) or certain fabrics,routine changes,does she have obsessions with certain toys i.e stacking blocks over and over or lining things up(stickers was my dd's thing),loud noises,busy crowds.I know its a lot to think about but any-thing you know she reacts differently to compared to her sister write down.Dont ever be afraid to be pushy or really firm,you know your daughter best.xx

I agree good luck xx

 

[Eoz]

hey hunny how are you doing and your little one xxxxxx

 

[Twinminator]

Hi Eoz, she's actually doing really good She's started saying mamamamamama, which started from her pursed-lipped whining, then she opened her mouth so it'd carry more volume lol and realised she said Ma, and now there's no stopping her!

My doc specifically asked (when i said she had no words at all) whether she even babbled mama or dada, and I said no, which is what prompted him to worry more than when i described her behaviours.... now she's going to make a liar of me at the paediatrician appointment... Oh well, it's a nice way to be made a liar of I suppose

I had painful braxton hicks last night and then i had vivid nightmare about waters breaking and losing plug at the stage i'm at now (25wks) but hospital turned me away saying they were too busy to look at me!!!!!!!

 

[Twinminator]

Got paediatrician appointment on Friday but really don't have the energy for this right now

DH had a lot of health issues the past few months, he's been very depressed with it, had given up smoking since leaving hospital early Oct then announced to me last night that after two months smoke-free, he's just started up again, which he really can't afford to do on many levels.

I've been carrying on, 6 months pregnant, with my twins, virtually snowed in (can waddle to corner shop but 12 days not been able to get out in car/with the girls now, and fresh bloody snowfall overnight, just great) and DH like a zombie in the corner, but I've thought it'll be worth it when everyone's health things are sorted out, and have been keeping as upbeat as possible and making life as comfortable as possible for everyone.

Now I just feel totally deflated, like I'm fighting a losing battle with everyone. I'll probably not get to the appointment on Friday anyway if we don't get a thaw pretty bloody quick and I'm just struggling to see why I bother at the moment

UPDATE: Head paediatrician spent hour and a half with Lolly, and says " without a shadow of a doubt" she is autistic and to "expect a long term relationship" with her and her team. Will post rest later. Bit shocked

 

[Newt]

oh hun, it sounds like everything is on your shoulders at the moment, no wonder youre feeling deflated. it may not sound like it but having a professional saying that se is definatly autistic is a good thing, she should get all the suport she needs rom now on and the earlier the intervention the better. We are still waiting for someone to say that to us and being in limbo is so much harder.
I hope your dh picks up a bit soon, you need him strong

 

[Twinminator]

Thanks for your words hunny, knowing there are others out there going through similar thing is really really really helpful, I can’t tell you how much. Have got over the shock a little bit, but right now it's not the autism itself that's playing on my mind but the particular behaviours that are manifesting in her because of it, that are “unique” to her - namely her dangerous obsession with climbing combined with an ingenuity for improvisation (i.e. clever ways to get to where she wants to get) and her seemingly superhuman strength.
I keep finding her on window sills for instance, how the hell she manages it is beyond me (paediatrician said she'd never seen a girl her age so strong) and isn't such a problem in winter but she did it at my friends house, upstairs when supposed to be napping. Still can't figure out how she got out of the travel cot other than just hauling herself using her upper body weight.
I had been hoping and praying all this was a phase and by the time the baby was born, she may have grown out of it, but the paed petrified me talking about funding to have special pushchairs made for later on if I still can't control her...
I just don't know how I will cope with her physically in this particular scenario if she can't learn it's dangerous.

Sorry to run on, I just wish I had a crystal ball that would tell me she'll definitely not need that level of intervention. But she's such a big and strong willed child, I'm feeling a bit hopeless at the moment.
Thanks for you message of support, I really appreciate it xxx

 

[Newt]

I know, what you mean, I am terrified that my lo will go off with someone, he has no fear of strangers and will go to them if he thinks he can use them as a 'tool' to get what he wants. You will cope though hun, you find a way, its not impossible to get through to autistic children, its just a different route.
thw, if you ever find that cristal ball, can I have a lend? lol x

 

[Twinminator]

LOL no problem! xxx

 

[Midnight_Fairy]

I know, what you mean, I am terrified that my lo will go off with someone, he has no fear of strangers and will go to them if he thinks he can use them as a 'tool' to get what he wants. You will cope though hun, you find a way, its not impossible to get through to autistic children, its just a different route.
thw, if you ever find that cristal ball, can I have a lend? lol x

I feel the same. Its emotionaly draining tbh, keeping an eye on them all the time. Hugs all of you x

 

[Twinminator]

Hugs right back at y'all! xxx

 

[Twinminator]

I'm keeping this short and sweet purposefully, I'm angry and upset and possibly hormonal, although I think I'm justified in my frustration

Health visitors came yesterday for a home visit, spent an hour 'playing' with lauren alone, it was all her own agenda, did some of the tasks they wanted her to do but generally was in her own world. And silent throughout. As I expected. They're putting tickscore into their computer system and coming back to follow up on new years eve. Fine.
Today was her hearing test at the clinic. I'd wondered how they were going to do it and was dismayed that it was simply making noises behind her, I knew she'd fail, and she did. If she wasn't trying to get on their furniture, she was engrossed in a particular toy, and would not turn round for the sounds. To prove my point that she CAN hear, I crinkled a pack of mini cheddars behind her and she turned. But they said they couldn't pass her, she had to respond to the things on their tick list (bloody tick lists!!) so now she's got to have the ABR hearing test at the hospital under sedation. Fine.
I texted my best friend to fill her in, and added at the end "I can't help thinking that this is all a far cry from the kind of pursuits I imagined sharing with my daughter growing up " and after a while I got a reply back saying "Big hugs. But I didn't want for my daughter to have excema and wear glasses, but shit gets thrown at you sometimes."

Now forgive me if I'm wrong / over-sensitive / selfish, but I'm so cross, disappointed and saddened that she is comparing such issues, she knows me and my girls really well, we're godparents to each others' children, etc etc. Oh I don't know. I'm better off in a cave, I don't see the world in the same way, I don't like what I see a lot of the time. Is it my hormones?? Am I expecting too much by way of support, nobody seems all that bothered.

 

[Midnight_Fairy]

I think her response was very insensitive! What a stupid comparison. (IMO) I hate to say it but some people just wont ever understand xxx

 

[Twinminator]

It's so hard at the moment to gauge how I'm meant to feel/ react/ behave, when I feel I ought to be taking pregnancy hormones into account. Having had PND after the twins too, I always feel like I've got to be almost apologetic for getting upset about things, or logically talk myself out of anger, because "it's all in my head" but I'm starting to think I sell myself short and I should NOT feel guilty for being cross and upset for once.

Sorry, I think I'm just trying to convince myself...!!! xx