cant wait for first appointment...pulling my hair out...heeeeelp

my son harvey is 23 months old and is disabled. he has a multi system genetic condition called tubeorus sclerosis complex. he has brain tumours, severe epilepsy, west syndrome, heart tumours causing wolff-parkinson-white syndrome, tumours on his kidneys, global development delay, gastroeasophogal reflux, eye sight problems inc right convergent squint, sensory processing isues, hypersensitivity and possible autism. he had his assessment at 20 months of age as they wanted to do it before his 2nd birthday. as he is disabled and has many diagnosis they couldnt tell me for deffinate if he has autism altho they did say it was very likely and with TSC there is a 40% chance he will have it. Make a list of all the activities you do with him every day, like bath time, dinner, going to the park things like that and choose things that he will associate with doing those things, like for harvey, when he is going to have dinner or breakfast or snacks i show him his bright red plate first and say "were going to have some food" ive started doing this for everything we do, bath time i show him his sponge, going in the car i show him a toy car that i take with us in the car, its object association, helps them recognise things and associate words with activities. harvey also doesnt like things being moved in the house or people coming in so i show him a picture of who is coming round and tell him so he recognises them when they come. i havent seen a huge change in him as of yet but with everything else medical going on ive been told not to expect it.

Glad to have helped a little and good luck on Friday! I hope that you can get access to SALT the sooner the better really we were on the waiting list for AGES! and if they put you on the list quicker then you will be seen quicker. Have you requested special needs support through your local authority or HV? I don't know what is available in your area but our local authority runs childrens centres that supports both children and parents particularly cildren with SEN.

Thanks for your suggestions. They have helped me try and re think my situation. I have a meeting on fri to join a carer's support group and i am also going to try taking him to a different toddler group. I have requested a S.E.N which, if they agree, will give him access to SALT. So fingers crossed. Thanks again

Hey. I take my son to playgroup 4 times and a week and i just wanted to let you know that even though you may feel like people are staring at you, they're probably not. I've seen children that seem diffirent to the other children, and to be honest i dont pay more notice to them than i do to any other child. The reason being is that 1. I wouldnt want to make the mother or child uncomfortable and 2. yes a child may be diffirent, but it's not like they've got two heads, they're just diffirent. You'd be surprised how many other people think like that too. Maybe taking him to play group might help him with social skills abit more. It's a pity for you not to go just because you feel that people will stare.

Hi Teresa
My middle son displayed lots of autistic tendancies especially around the age of 2 and with me working with children with special educational needs I was very aware of the signs etc. Nobody would listen to me when I became concerned about his speech well lack of it at the age of 1 and a half - I just knew that something wasn't right. My HV wouldn't refer me at all to SALT it was just pure luck that when I went to clinic one day it was a locum HV who referred me straight away. It only took a few months of SALT for him to really develop his speech and language and as that improved so did his challenging behaviours - it was purely frustration that was making him so difficult. Although I still feel that he displays some tendancies possible dyspraxia which comes under the spectrum umbrella. The main thing that i can suggest is try and get him to mix with other children and I know how difficult that may be as you are so aware that he is different as you say but bite your tongue and try again perhaps a group a little away from where you live? Also research makaton - as used by Mr Tumble on CBeebies, he may take to it or he may not but it is worth a try. You say that he enjoys songs etc would he perhaps participate using an 'instrument' even if only a pan and spoon?! Again possibly worth a try. Another suggestion is using a hand puppet some children particularly autistic children prefer to communicate through a third party, try 'talking' over play telephones, roleplaying with teddies etc. Rolling a ball to one another and shouting names, blowing bubbles and popping them - all activities that I have to use with autistic children as advised by the local authority. There are lots more and would be happy to share some ideas with you, bit tied up at the mo as have a 7wk old at home that doesn't like to sleep very much lol! Hope my rambling has helped you a little! x

I have a 26 month old boy, not talking and displaying some very loud 'red flags' that indicate autism. He babbles and makes lots of noises. He loves it when i sing and read to him but makes no attempt to participate. other abnormalities are: 1. he doessn't point or wave 2. he still wont drink from a cup, or feed himself 3. doesn't engage in pretend play 4. he doesnt hand flap, but spends a lot of time looking at his hands and fingers. 5. i have tried picture cards but there is still no communication between us although recently he has started to grab my hand if he wants something, or he will grab my skirt and lead him to his chair if he is hungry. 6. There are no other toddlers in family and he rarely sees other toddlers although when he does he does smile at them. i tried a couple of play groups, but felt so aware of how different he was to the other kids i felt everyone was looking at us and left in tears. I tried searching for a group we could join for kids with problems like this but i couldn't find any. I have already resigned myself to the fact he is probably somewhere on the autistic spectrum. It broke my heart but i am determined to help my little boy progress and i am starting to get over the heartache. The health visitor has recommended i take him to a local centre for assessment, and i have now received a first appointment...in eighteen weeks!! I am just wondering if any one has any suggestions that might help, or any tips on trying to improve the situation meantime. I feel he is deteriorating and am in despair at the thought of waiting all that time. Any advice would be very helpful thanks teresa