awaiting an assessment/groups

[MummyMana]

Hello all, I hope I'm allowed to post in here as we have no diagnosis, we haven't even had our initial assessment yet but I was hoping I could reach out to some of the mummies in this section...

Imogen has had some behavioural difficulties, mostly to do with headbutting, but there's other things too... We are working with a health visitor, a family practitioner, and have just been given a social worker with special needs experience, and have been referred to PIMHS and a paediatrician. Sometimes imogen will have good days and I'll think "surely this can't all be necessary" but then she will have a normal day haha. All the people we are working with seem to echo the same opinion, than imogens behaviour definitely isn't typical, but the frustrating part is none of them will elaborate, they just say we can't possibly tell until she's been assessed properly, so I can't even prepare myself!

The other frustrating thing is groups. There is one toddler group around here, and although it's a fantastic group, it is a major trigger! But there is so much pressure, even from the people who are working with imogen, to attend the groups. It's supposed to help her social skills, but it makes her so angry it's a very busy, crowded environment and we seem to spend most of it alone in the foyer :/

I was wondering if anyone has been in a similar situation to us, how long it took to get any diagnosis if at all, what I should expect, and if there's any ways I can help build on her social skills with other children if the toddler group overwhelms her so much? I was thinking about trying to set up my own group, a more relaxed one specifically for children with additional needs, but it's such a new experience for me I wouldn't know where to begin! There must be other mums in my area who avoid the groups because their children react in the same way :/

Again sorry if I'm not meant to post in here, and sorry if I ramble a bit!

 

[lusterleaf]

Hi, how old is your daughter? Not sure where you are located but I am in the US and when my DS was 18 months I called up our local Early Intervention department- mainly because he was still not talking. They sent over the evaluators to our home and at first my DS was found to be severely delayed in expressive and receptive language so they approved speech services for him. But then, I pushed for a psychological evaluation because I noticed DS displayed some odd behaviors (like obsessively opening/closing doors) and the psychologist diagnosed him with ASD. He has been receiving services since. At first my DH was angry that I brought the psychologist in that diagnosed him, but my reasoning was, I want him to be able to get services as early as possible.

I think its great that you want to get her involved with social groups. I myself tried going on meetup.com to try and start a group of moms and their special needs kids for playdates but it didn't quite work out.

Anyway sorry for rambling, but if you know something is not right with your DD then I would get the steps moving toward getting her evaluated, and maybe this will get her services that she needs.

 

[MummyMana]

Thankyou so much for replying she is 21 months just turned

Can I ask how long it took to get your diagnosis once the ball got rolling, and also what sort of things did the psychologist do/look for?

I'm in the UK and it sounds like things move a lot quicker where you are! She's on a waiting list for an initial assessment, she will be seen some time within the next 18 weeks basically, but we're also down for short notice cancellations, so it could be sooner! But we won't get a diagnosis from that, they will just be deciding if she needs further assessment...

Half the time I feel like I'm going crazy! Like I've got all these people coming in, talking about next steps, a social worker with experience in special needs told me that after 5 minutes observation she could notice things about imogen (I never found out what), then my mum will talk to me when I'm stressed out and kind of trying to get it off my chest, and say she doesn't think theres anything up with her, which then makes me feel like Im just imagining it all she will have a few good days and I'll wonder why we're even going through this process, then we'll have bad days and I'll wonder how I'm still standing at the end of the day haha!

 

[mummy2o]

In the UK it varies region to region. When my son was diagnosed they just sent him to an assessment nursery for a few weeks and that was the outcome. I believe we were on the waiting list for about a year though but according to his paediatrician this was quick!

 

[Reid]

We're in Scotland my son was referred for speech therapy this took 7 /8 months before we seen anyone. I've found most things take time which is very frustrating. I'd say to you if your not happy and your child's not happy at these groups I wouldn't go don't feel you have to because the hv says you should or even cut down the time say go 20 mins if she settles into it you can add 5 10 mins slowly over the weeks. It also could be am idea to ask the hv to come and observe her at this group to see how upset she gets at it. I've found you have to ask alot of questions they don't just tell you and if it's playing on your mind ask her what it was she seen the 1st visit to see your daughter xx

 

[MummyMana]

I'm seeing the social worker again next week I think, so hopefully I'll get a chance to ask her sone questions she's going to come with me to the group and observe imogens behaviour there, which will hopefully help build up our case, so to speak!

It gives me hope that you all day the process moved pretty quickly once the initial wait was over, I think not kbowing what's going on is a big part of the stress for me, it's like being in limbo...

 

[lusterleaf]

To answer your question about the psychologist, basically he brought over a suitcase full of different toys to see how DS would react to them. Like one was a toy rocket he shot off and DS did not follow it with his eyes. Another thing he did was cover a shape sorter toy with his hands and to see what DS would do. DS tried to move his hands from the toy but he was looking for my DS to look at him to try and communicate that he wanted him to take his hands off. Also asked me a bunch of questions about his behavior. So from his testing and from the questions he asked me about my DS he was diagnosed. I was fortunate enough to have everything move pretty quickly though.

 

[MummyMana]

I have no idea if imogen does those things I think her eye contact is great but that's because we've been working on it with a lady who comes round, it was almost none existent before but now she's good and will make eye contact for a second or so at a time, so I think she would look at someone if she wanted a toy they had... Or just get angry and try and take it lol, she's so hot and cold!

 

[mummy2o]

Since autism is a spectrum I wouldn't worry much if she chooses to have good eye contact during that appointment. There are some children on the spectrum with brilliant eye contact. There are no two people alike on the spectrum. One can have decent, although not perfect communication skills, were another has none. One might run on tip toes and/or hand flap, were as another doesn't need that type of stimulation. All parties looking at your daughter will be trained to look for key signs your child does, which 'normal' children don't. Behaviour wise my son was more or less pretty placid. He did have his meltdowns for sure, but they weren't as frequent as others. He adapts well to change which isn't what many people on the spectrum like, unless its really important to him. Also there are signs in my daughter being on the spectrum also. Which is fine and she has good eye contact for her age, but she doesn't play with toys like a normal child her age and does a lot of things her brother did like sit in front of the washing machine go round.

 

[MummyMana]

Thought I'd give a quick update as I've been quite quiet on the forums lately... I got imogens appointment through today her behaviour seems to have taken a turn for the worse in the past few weeks, so it's come just in ttime! Her eye contact seems to have plateaued which I'm quite happy about as I was worried she'd lose that with her behaviour getting worse again :/

I'm nervous and excited at the same time to hear what the paediatrician has to say - excited that they may be able to help but nervous that they'll just say it's my fault and she's just "unruly" or something :/

 

[sequeena]

Good luck! !

 

[MummyMana]

I was wondering if anyone has been in a similar situation to us, how long it took to get any diagnosis if at all, what I should expect, and if there's any ways I can help build on her social skills with other children if the toddler group overwhelms her so much?

UPDATE!

For anyone in a similar situation searching old posts for answers. 3 years. My daughter was diagnosed with autism last month!