A and A

We have just been refused an assessment for our son for the second time in just over 5 months. We are wondering do we still have the right to appeal against the second decision? As the letter from the LEA with the second decision didn't mention anything about our right to appeal.

Hi there Joels mum, I am Anna mum to Liam who is 3 who last week has been diagnosed as with ASD, we have only been going since June this year so we are relieved that we got the diagnosis so quickly compared to other parents that we have spoken to. Liam was lactose intolerant from 8 weeks so had to go on Nutramigen powdered milk as I was unable to breastfeed. Liam doesn't speak at all and uses PECS to communicate with us, Liam has very little eye contact and plays with no toys at all and is affectionate but only on a very small scale, Liam is a very happy little guy who loves watching Mr Tumble where he gets very excited over and dances and hand flaps in front of the Tv. We were told that Liam had outgrown his Lactose allergy but we were not convinced so have put Liam back on Soya products and we have reduced his Gluten intake by swtiching things such as bread,pasta, biscuits, cakes and breakfast cereals.We are currently waiting on a appointment from a dietician to discuss this further. We feel it has helped by changing the diet with regards to gluten and dairy we have noticed that Liam has a little more eye contact and is becoming more loving and the stomach cramps has lessened by a huge amount and so has the constipation so I would say go ahead and try it is well worth it. Sorry this is so long. Which area do you live at. Good luck and keep at it. Take Care Anna (from A and A)

Hi there thank u for thinking of us, Liam has attended 5 weeks of group portage and has made a improvement only small but for Liam that is great news he actually picked up a paint brush and done some painting which is a first for him. We have been put down for the Earlybird course by the specail needs health visitor all the staff that we are working with have been fantastic and could not ask for any better. How are things with you and your family. Anna (A and A )

Hi there we have a ds that has just been diagnosed with asd at the age of 2 we feel lucky as this all started in June this year so we have not had to wait as long as some parents, we know now that this is just the beginning of a long journey and would like to hear from other parents with newly diagnosed children as we are very uncertain about our feelings and not sure how to cope. A and A

Hi there we have 2 children Joshua aged 5 and Liam will be 3 on halloween, Liam has his final assessment at the CDC Nursery this wednesday when the nursery sessions ends we have a meeting with the MDT Team where we know that we are going to receive a diagnosis of Autism for Liam, which I am finding it hard to accept and don't know how to deal with my feelings so would like to hear from parents in the same situation and how do u cope. Anna

Hi there we have a son who will be 3 at the end of october and has 3 weeks at a specialist nursery for assessments by the MDT team and then we have a meeting with them after where we have been advised that Liam will receive a diagnosis of Autism which we think we are prepared for but guessing it will be different on the day when we hear this. The nursery that Liam attends has asked for information about writing an IEP but really don't know anything about them and not sure what to say. Any help would be appreciated. A and A

Hi there we are A and A, We have a lovely boy who will be 3 on halloween, Liam is currently having assessments as he has no speech and has a global developmental delay and sociocommuniaction problems, done at the cdc centre in bury st edmunds suffolk and is to have 3 weeks assessments in there specialised nursery after which the whole MDT Team will discuss what they have observed from Liam and then talk to us, all Liams tests blood tests for fragile x, Metabolic disorder have come back negative and his chromosomes have been checked and they are fine, so the paed said it is looking very likely that Liam is on the spectrum we are putting in a Statement of special educational needs soon and would like to hear from anyone that has had to apply to Suffolk LEA for this. A and A

Hello there we are looking to hear from anyone that can help us find a ABA Consultant in East Anglia as we have tried and can't seem to find any. Anthony and Anna

Hi there good to hear from you, yes we have got another appointemnt at the CDC on september the 7th to discuss the the blood and urine test results we know the blood tests have come negative after testing for the following Chromosomes, fragile X, CK, Plasma amino acids, we are waiting for an assessment for Liam at the CDC Nursery not sure when that will be, we are still continuing with speech therapy, physiotherapy and are waiting for a educational psychologist to contact us regarding specialist nursery placements. No we didn't have any luck with portage as they said Liam doesn't fit the criteria for home portage may have a place in group portage but after discussions with salt and community paediatrician Liam needs hoem portage not group so the salt and paediatrician have referred Liam again. A and A

Hi there we have a 2 year old ds who is currently undergoing assessments and tests as he is showing the signs of a autistic child. When we first asked for help due to our concerns for Liam which we were listened to and everything seems to progress really quickly such as speech and language therapy, physiotherapy, referral to an educational pyschologist, appointments at the CDC, blood and urine tests have been taken, but we now feel that everything has come to a full stop. We would like to talk to any parents with Autistic children in the east anglia area. A and A

Hi all, I'm wondering if anybody on here has experience of ABA? I want to do something to help my son, sooner rather than later. Fed up with all the waiting around for help from our services. I've seen some online courses, anybody think there worth it? Are there many trained ABA special needs teachers in this country? and are they available from LA or would i have to go private? Thanks, Anthony

Hi there Lisa the books we have found a help are The Autism Spectrum by Lorna Wing and Not Stupid which is written Anna Kennedy by a mother with two autistic children and her fight to give the children the quality of life they deserve. I was reading your message above and wanted to ask you some questions we have a 2 yr 8 month old son who is having assessments by the multi discpilnary team at the child development centre, so far he has had his hearing tested and thats fine, he has seen a consultant paediatrician once who has requested blood tests for fragile X which have been taken a week ago, he also wants Liam to have a muscle test and possible MRI later, he wants to see Liam again in 3 months time, we are waiting to hear on portage which was refused but the doctor and speech and language therapist (who he sees for an hour each week as Liam doesn't speak at all) have done a re referral as they feel he needs portage at home, we are also waiting to hear from a educational pyschologist about getting Liam a place at a special needs nursery, what age did you feel you needed help as you had concerns on your son and what age did the assessments start and how long did it take to get a diagnosis. Sorry its a lot to read, it our heads we know he has autism as the doctors have agrreed that the signs are all there, I just dread the day when they say what the diagnosis even thoughwe are expecting its gonna hit us very hard, how have you coped since your son was diagnosed. Anna from A and A

Hi there well done on you and all signed here. Anna

i dont see being off work for 4 months and beng on anti depressants as coping, i think you should give it up.

hi there just to say we applied for a statement of statutory edcational needs for Liam aged 2 years and 8 months who is showing ASD signs liam doesn't speak any words just makes sounds, the statement of educational needs came back as a no due to not enough evidence which we were expecting but the panel did notice that Liam requires further support and help so they have referred him to a educational psychologist who will contact us soon, with regards to specialised nursery placements a statement is not needed you just need a referral from the educational psychologist so be sure to get this arranged. A and A

Hi there we have a ds aged 2 years and 8 months and we had our first assessment on monday with the paediatrician at our child development centre as there are concerns that he is a asd child, the paediatrician was fantastic listened to our concerns and what we had to say and took a history from us on Liams health and development and took measurements such as height, weight, leg length and head circumference, and he agreed that Liam does need further examination and assessments, so he has arranged blood tests for fragile X and other things and wants Liam to have a muscle test and possibly a mri scan at a later date, and we also have physiotherapy, speech and language therapy, and they are wanting to see Liam at the child development centres nursery to observe him there, so all I can say is don't give up and remember to fight for what u believe in and we have, just hope u have a great multi discplinary team like we have. Take Care A and A

Hi there we were asked lots of questions about the pregnancy and then we spoke about Liam and his development and what we felt the problems were and then the doctor listened to liams chest and then measured his height and his leg measurements and measured his head and then done his weight, we then chatted some more and he agreed with us that Liam is showing signs of a child with autism which we had prepared ourselves for this, the doctor has requested to see Liam again in 8 weeks in which time he wants him to have blood tests done for fragile x, a muscle test and possibly a MRI scan at a later date, he was also going to chase portage as he feels that Liam would benefit from having portage at home. He also said that the multi discplinary team have a meeting every wednesday and he is going to discuss liam with them so will just wait and see what will happen next. A and A

Hi there Julieanne I know exactly how u feel we have a 2yr 8 month adorable boy who has his 1st assessment and blood tests, mri test and a mmuscle test is being arranged the paediatrician that saw Liam was fantastic and has got things moving, yes i feel a huge sense of loss we have just spent 2 weeks in china with my family and they have a little daughter who is two at christnmas and it was upsetting seeing her doing the things that Liam should be doing,we also looked at video footage that we recorded when he was a baby and he responded to voices and play which he doesn't now and that had me in tears as i feel we have lost the little boy in that video but we still love the little boy that we have very much. Anna

hi there we had our 1st assessment yesterday with our ds aged 2years 8 months and the paedatrician was great he asked lots of questions about the pregnancy and Liam and then he examined him usual things height weight etc and then done a few tests with toys such as bricks and jigsaw puzzles but got no response from liam.We discussed what happens next and he wants Liam to have blood tests for fragile x and other things, he also wants a muscle test and a MRI scan possibly at a later date, he agreed that it very much looks like Liam is showing signs of autism but obviously to early for a diagnosis yet and then to see him again in 8 weeks time when the blood test results are back. We feel now that someone is listening to what we have to say and Liam has got a lot ahead of him as he starts speech and language therapy on thursday and physio in october and we are waiting to hear from a education psychologist to find liam a suitable nursery as its been identified that he needs that extra bit of help and support. A and A

hi there we have just recieved a letter from Portage and we wasn't accepted but they maybe able to offer a group placement if they can get 4 other children but explained to the portage staff they liam would have done better on his own as in a group situation he doesn't do well as he hates lots of noise and backs of from the activity, and the other knock back is that they won't do a statement which we were expecting as there isn't enough evidence as yet as he has his first assessment at the cdc on monday but they have acknowledged that Liam needs a special needs nursery placement so they have referred Liam to an educational pyschologist which is good news, just feel really low at the moment and hubby is taking the brunt of my feelings which isn't good for him bless him. Anna from (A and A)

Hi there we have a loveable boy who will be three in october and he is showing all the signs of being a autistic child, he has his first assessment at the child development centre next monday and I am worried about what is involved and what will they do while we are there, and what is a CARS form. A and A

Hi there we are just starting the process of a Statutory assessment for our 2.5 year old son who is showing all the signs of a ASD when we recieved our letter yesterday what they want to start with is your views on your child so we have included the following information Our childs birth and his first few months of life and any problems he had, any help or advice that was given early on, the childs health eating, sleeping, illnesses, physical skills, communication,personal skills,behaviour,relationships, social skills, and why we think that the assessment needs to be made and then we have to send it back and then they have 6 weeks to decide whether they go ahead with the statement which hoping that they do they will write to us and Liams nursery asking for written statements about him. In my opnion and from what I have read the more information the better as you have to really fight to get the assessment done , but as the school is requesting it that sounds hopeful. Good Luck A and A

Hi there Karen, the reason I am worried about the MRI is that I had one done of my head when I was pregnant with Liam and another one when i had pancreatitis so being it honest it was ###### scary and I hated it and wouldn't want any child to go through that ordeal. Do you miss nursing as I am a carer that works with the district nurses covering the hours of 6pm till 10pm and I love the job. Anna

Hi there the appointment is the 14th of August. I phoned up about portage yesterday and they have recieved the referral and they explained that they are sending out letters for receipt of the application, and that the panel are meeting on the 26th of June to decide which children get a place on portage, so fingers crossed huh. What age did the assessments start with you and how long did it take till you got a diagnosis. Anna

Hi there we need to find out as much as we can about fragile X. A and A