dd doesnt seem to fit any dx pead app soon need advice plz

[Chundle]

Hi all looking for some advice plz. Dd2 now 2.5 yrs. Been in the system since she was 9 months old due to delayed gross motor skills which are now all fine although still struggles with stairs.It was picked up that she had some sensory integration issues and referred to CDC which she attended until she was 2 when they discharged on the basis that she was too intelligent. She sees a developmental pead.

She had speech delay and has caught up now which only some minor issues/pronoun issues/refusual to talk in social situations. She is very very anxious, petrified of insects, will not tolerate new clothing, is a very poor sleeper (on melatonin), dislikes loud noises like the Hoover and cries, dislikes being amongst her peers and withdraws if approached by them. Tantrums are several times a day and prolonged and involve hitting, kicking and spitting.

She's fussy with food.

On the plus side she makes great eye contact with family and people she likes, she's very smart can work an iPad, count to 20, do puzzles and identify shapes and colours.

Pead said at last app he wanted her to have an ados for HFA mainly due to her sister having ADHD and some AS traits. However he said it depended on whether this was accepted by the rest of the CDC panel. It's been 4 months and we've heard nothing about the ados. Pead wanted it done before she started pre school so they could get an idea of her issues.

We are struggling with her behaviour but she has been discharged from portage as she can do their puzzles and from CDC as she was too smart so feels like we have no where to turn.

I don't know what to ask the pead for when we see him ?? He's a lovely bloke and was excellent with my older dd but I feel his hands are tied with my younger dd being involves with the CDC. DH thinks we should whip her out and get private assessment. What do you guys think? Sorry about length and thanks if you have got this far!!

Hi chundle, I have a Dd who sounds similar in some ways to yours.

Mine was not in the system at all until she was 5 and I got the ball rolling, like your Dd she is bright but she doesn't have good eye contact.

She has motor issues gross and fine although these wern't identified until she was 8. I did wonder for a while if she had dyspraxia and I still do sometimes.

She was eventually dxed with Atypical Autism at 9 although the psychiatrist decided to put ASD on the final letter because she said it would make it easier for us to access support. [no one knows what Atypical Autism is apparently.]

Girls are hard to Dx because they are not like boys [surprise surprise].

My Dd3 had really bad tantrums between 2 and 4, they are getting less regular now and last for shorter times.

I would reccomend keeping a diary of her issues, what causes them and how you deal with them.

This information got us further through the system than anything else.

Also does she go to preschool/playgroup. If you could find a good one with a decent SENCO they could start things moving from their end too. Just beware that she might hold it together while she is there and not show any traits. Although I still don't understand how Dd3's pre school and first school managed to completely miss her. Whe the second SENCO and class teacher picked it up in about a week.

Sorry my answer is so long, good luck.

Thanx ineeda that's really helpful. There have been many conflicting opinions about dd2. Pysch says no issues and I feel she blames me! OT says sensory, one pead said bit dyspraxic and some asd traits and latest pead mentioned HFA issues.

Last time we put her in nursery was a year ago and she went on hunger strike refusing to eat for the entire day and screaming at anyone that came near her. It persisted for 12 weeks so I had to give up work!

She will be going to dd1 school who has an excellent senco in September so hoping that goes ok.

Girls are notoriously hard I know, was a struggle to get dd1 dx with ADHD and we have only just realised that she can't follow a point and she's nearly 8!!!!!

I will start a daily log as we are going away over easter and she finds going away from home very hard so that will be good evidence. I feel this will be a very long road...

Hmm, I had the same problem with hunger striking. Dd3 has done it twice now at 16 weeks old she reused to take anything from our lovely childminder who had looked after Dd2 for 3 years. I had to give up work too. She did it again when she started school at 5 because she couldn't stand the dining room.

She still prefers not to eat at school but sits away from the crowds and hides, virtually in her lunch bag while she shovels her sandwhich down.

My Dd1 was nearly dx'ed with ADHD when she was 9, she is now 23. I actually think she has AS and ADHD but my parenting was blamed and she ended up with no DX.

I really stood my ground with the proffs over Dd3 and refused to allow them to blame my parenting.

Although I am lucky because I have Dd2 in the middle and she is as NT as they come..

Dd3 has mostly loved going away on holiday but she is very quick to establish new routines and rules, such as whatever time she has an icecream on the first day, that is the time evey day that she will have to have one!!
We camp so I think that helps because we have our own tents that she is familiar with.

I hope you don't have a long journey to get suport for your LO and fingers crossed for the SENCO helping you. Dd3's SENCO at her 2nd school is amazing, her and her team of support staff are so tuned in. I was very fortunate to have the school which is a resource base[for physical disabilities] on my doorstep. I only wish I had sent Dd3 there in the first place.

Thanks ineeda that's so very helpful!! Dd2 hunger striked in eurodisney last month so I'm sure its going to be a longstanding thing with her!! Now I've got acceptance of her nursery place I'm going in to meet with nursery teacher next term to have a chat and HOPEFULLY get some sort of help for dd. Will keep you posted how we get on at pead as well. Thanks for all your advice much appreciated x

One thing I leaned very quickly with Dd3 was to carry bits of her favourite foods around with me. Then if she did say she was hungry I always had something for her.

I used to worry that she could go without drinks as well so we always carry those around to. She only drank one brand of squash for about 3 years. LOL.

You know when they stop being little and you think you can carry a diddy little handbag!! No chance.

Hope you get on OK on holiday and with the nursery teacher.

I am just starting transtion meetings for the LO's I work with who are moving from preschool to Nursey in Sept.

You can find me on here for a browse most days. It is a great support network. I have had more support on here than anywhere else.

Good luck.

Haha ineeda your handbag sounds like mine!!!

Thanks I usually browse here most days too.

Thanks for all ur help

i think I would push for the ADOS. my DD has severe s&l issues but otherwise is quite un-autistic in many ways iyswim. dev paed always said she was pretty certain DD's issue were rather s&l related but not asd. as DD's Salt, EP and nursery Saw asd some traits, we had the ados and DD was diagnosed with classic autism. for us, the dx only came with the ados. no way paed would have diagnosed her with autism otherwise. paed also said after ados that girls can be very hard to pick up (esp when there are no speech issues).

Thank you choc I shall ask the pead about the ados then maybe there's just a long wait for it. Her speech has improved immensely she just has a few oddities that only me and dh understand what she means like she will say "a barney one" if she wants something particularly good or special as she's quite obsessed with barney from TV. But ' a barney one' could mean anything from a nice biscuit to us blowing her a big bubble!

Our paed wouldn't ados DS1 till he was old/developed enough for the module 3, and his ADHD had settled down a bit (when he was really hyper, I don't think the video would have been quick enough to catch his ASD )

I think the module 2 can miss some of the higher-functioning kids

I meant to say Dd3 was eventually dxed with the help of a DISCO assessment. There is a bit about it on the NAS website.

Thanks Maria that'd good to know! Maybe good idea to hold off then anyway, cheers ineeda will have look at disco assessment x