new here please help im pulling my hair out :(

[emmajh]

Hi all I have two daughters M is 8 and has ADHD.R Is 3 today and has been under a pead since birth due to prematurity. R got referred to child development centre at 9months old due to slow gross motor skills, it was picked up there that she had sensory integration issues. She was discharged at 2yrs old due to her being very intelligent and they couldn't see any realy problems. This cdc mainly takes in severley disabled kids so R must've appeared wonderfully easy. She did however hav great difficulties remaining in the room as she dislikes busy places. Last December pead referred her for ados. We are still waiting. Operate discharges her as she could do all their puzzles.

 

She was speech delayed at 2 but has caught up wonderfully with just some pronounciation issues. she disnt walk til 19 months and is partially toilet trained just this week.

 

She has a severe button phobia and won't wear any clothes with buttons on or that are a funny textures. She doesn't sleep and takes melatonin. She is a tyrant in our home and has to control everything. It's her way or the highway! She screams very high pitched when ahes excited or cross and is so very demanding. Fave toys are her trains or her DVDs.I am really struggling as is my hubby at the mo to satisfy both girls needs. R will get very angry AMD screech and hit/throw objects. She is due to start preschool in few weeks and theyve agrees to give her support without a diagnosis. She has awful seperation anxiety.

 

Everytime we see pead he nods and says we are atill on waitinf list for ados!! We should get another appointment in September. What cani do to get some help speeded up? Is it worth ringing gp and asking him for referral to different pead out of area? I don't want to go back to CDC as they just didn't have kids like R there and didnt understand. She has good eye contact with people she likes but will be completely mute and not talk in other peoples company that she doesnt like. Does this sound like asd? What can I do?

 

Many thanks and sorry for the essay

[emmajh]

Forgot to add she dislikes company of other children and hates any sort of grooming

[A-S warrior]

What cani do to get some help speeded up?

 

fight fight and fight. never give up, be strong and brave. do whatever you have to do, any means possible and get every avalible reasorce to use at your disposal. i dont know much about being a parent, but as a son, i was always at my happiest when my mother displayed strengh and confidence.

 

ive probably been no help, but if nothing else, welcome to the forum.

[emmajh]

Thanks warrior much appreciate your reply

[Lyndalou]

Hi Emma

 

Has the Paediatrician given you any idea as to how long the waiting list is? I don't think professionals realise how stressful it can be for things to be left so open ended but it is perfectly acceptable to be given an idea of how long you will have to wait. My son was under the Paediatrician in our area for around 10 months before he was assessed but this was actually partly my choice as I wanted to see how my son would develop and what the outcome of going to the Community Speech Therapist would be (my son has a speech disorder). Otherwise, my son would actually have received his developmental assessment much sooner. I probably also helped in our case that the Paediatrician suspected Autism from the first visit.

 

However, over the course of this year my son attended a Mainstream 2's Group (age 2-3, pre-Playgroup in Scotland) twice a week and the staff were aware that concerns had arisen about my son's development. Again, it probably helped that one of the staff has a son with Classic Autism and another staff member has a son with Aspergers so they were very supportive when I discussed issues which arose. I have to say that my son's behaviour was very manageable, insofar as if he was anxious around the other children then he just separated himself from them and he tended to engage in repetitiive behaviours, line things up or play with letter and numbers (his primary obsessional activity) which is possibly quite different from your daughters but it is possible that some of your daughter's behaviour stems from her anxiety and her inability to understand the concept of sharing etc. If she definitely has sensory integration issues then some of the anxiety could stem from this. For example, her button 'phobia' may in fact be a sensory issue. My son normally refuses to wear tops with buttons or trousers with buttons and zips, he won't wear many tops with embroidery or ironed on pictures, has difficulty with having things on his head and pointblank refuses to wear sandals (buckles) and puts up a fight when required to wear wellies.

 

However, I believe strongly that a child can, with time and patience and a big pinch of choosing your battles, learn to tolerate (some, not all) things that initially caused distress.

 

I personally think that going to pre-school would be helpful for your daughter and if you can find ways to work with the staff to lesson your daughter's anxiety while there, she will have the opportunity to learn social skills, including the concept of sharing and turn-taking and group work. I had to stay with my son in 2's Group for some time before I was able to leave him there on his own and the same happened when he started mainstream playgroup. Then, he normally required one-to-one help to take part in group activities and allowances were made for how difficult he found story time and similar activities. They also gave him he space to engage in his repetitive behaviours etc if it was clear that he was getting stressed. Towards the end of his time at Playgroup (age 4), it was starting to get very very noisy and cliques were forming so this was very difficult for him but at the age of 2, children tend to be more receptive to adult's direction and the environment was 'safer'.

 

I might be helpful for you to try to find other parents in your own area in order to find out their experience with the Paediatrician your daughter is under. They could give you some advice about how you could proceed. Contact your local NAS for instance. I do think though that your daughter's time at pre-school is a prime opportunity for you to have others observe your daughter's behaviour, for you to learn to understand more about what her difficulties are and where her strengths lie.

 

Note, intelligence should not be used for a reason not to pursue an assessment for ASD. Someone with a high functioning form of Autism are of average to above average intelligence.

 

Lynda :-)

[emmajh]

Thank you Lynda that's really very helpful. We were told she was on the waiting list but on enquiry she's still only on the 'thinking list'. They are put on this list to save having a huge waiting list! Then we progress to waiting list!

This pead actually diagnosed my eldest with ADHD and was very helpful however she was older and so didn't come under the cdc jurisdiction. I think peads hands are tied by the cdc team as to how much he can do. It's all very stressful. Yes I'm hoping preschool will be good in that they will see all her behaviours.

[aspergers mom]

emmajh

I think it would help you to read three books I have just read they are free until tonight you can find so much out they are by Stephen Gandy on Amazon.co.uk The one is an autobiography the 2nd about all problems from a mother with two children one with core autism and the other with aspergers You can just read which chapter is beneficial to your problems the chapters have been titled so the answers are easy to find sensory problems toilet training are all in there.

Hope you find these helpful they are written by real people. The third is looking at the world through autistic eyes.

[aspergers mom]

oh and emma jh been there done that got so many tea shirts

[emmajh]

Thank you very much have downloaded them now

[Sally44]

I don't know what CDC stands for?

 

I would go back to your GP and ask him if there is a specific team that assesses and diagnoses children on the autistic spectrum. You could phone your local childrens' hospital and also ask them [child's clinical psychology might be a good place to start].

 

If she has sensory problems, she should also be referred to an Occupational Therapist. She needs to be assessed for Sensory processing Disorder. And although the NHS OT service do not do much [if anything] for this type of disorder; having SPD as a diagnosis can be very useful further down the line ie, for example, you are looking for a school that can meet her needs as she may struggle in mainstream school environments due to sensory processing difficulties and getting overloaded and overwhelmed.

 

Your hospital should also have a PALS service, and they should be able to give you advice too about waiting times, and may also be able to find out about a specific department that sees children with an ASD.

 

Another route to professionals is via education. Is your daughter at nursery? I would suggest it would be useful for her to be going to a nursery because if she has problems there the nursery staff should refer her themselves to an educational psychologist, or a speech therapist or an Early Years professional. You could phone your local authority and ask them for the contact details of Early Years or Portage too.

 

Remember that the whole process of getting a diagnosis can take time [took us 18 months in total], but your daughter is 3 and could be starting school before any actual diagnosis - which could be hugely detrimental, especially with the sensory issues.

 

I'll try to find a link to a governments 'autism exemplar'. That should give you an idea of who should be involved and the timescales too.

 

This is the link http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4090571.pdf

 

There are also organisations that can help as you are going through the process such as www.ipsea.org.uk; www.ace-ed.org.uk, www.network81.org

 

I would also recommend that you get a copy of the Special Educational Needs Code of Practice, which you can download from the top of the 'education' forum on this website. This will tell you what the process is [via education], for children to receive support and professional input in school.

 

You can also contact the National Autistic Society and attend one of their "Help" Seminars. These are for parents of children suspected of having an ASD, or newly diagnosed. They give alot of advice about the process, benefits, education etc. Get onto the list for any seminars in your local area.

Edited August 28, 2012 by Sally44