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newbee looking for some advice...

Nikkinoodles29

my lovely boy is turning 4 in august, since he was born ive known something wasnt quite right. I had his eyes tested, his hearing, i spoke to countless gps and nothing - they told me until he was the age he is now, no one would assess him. I signed him up for a nursery in January, it didnt go well (although it started well) and after 3 days i had to tell them he wasnt going back. He has lots of autistic tendancies such as his obsessions, routines, facial expressions, not responding to his name being called, no sense of danger, no understanding of being good or naughty, he doesnt understand children are different ages and treats them all the same - he thinks he can hold their hands and stroke their hair like his baby cousin, his speech isnt fantastic and he uses his hands through conversations to 'sign' what hes talking about, he becomes extrememly upset if things arent done correctly, he has sensory issues with his hearing, sight, taste and touch. he loves being spun around, is constantly on the go from 5am til he collapses at 6pm. He doesnt sleep well, wont toilet train and is very funny with people and socialising. My sister was statemented with aspbergers last year aged 25 (my mums being trying to have her statemented since she was 2) and my cousin also has autism (shes about 11) I have been reffered to the peads, and have a 6 week course starting which focuses on behaviour and speech (im told its a stand in while i await the assessment with peads which can take upto 4 months before we get an appointment) ive read and spoke to lots of different people about their experiences, being a complete doh i thought it would only take a few months to see everyone, but i now know it can take years! i feel sooo sorry for my son, i feel like im constantly shouting at him because he doesnt listen, and is constantly doing everything he shouldnt be, i dont know if im heading completely down the wrong track, although im 99% sure im not. I just feel so bad for him, i dont know how to help him or where to take him to. I know no one can give me a straight answer, just looking for others to talk to with similar experiences xx

  • My son is 3. We adopted him from birth. My husband spotted the tendancies at 18 months (tip toe walking, stimming, obsessions with spoons and long handled cooking utensils which he would hold for hours, lack of speech and eye contact). We started speech and OT when he was 18months. We do not live in the UK but we are lucky to have an excellent school from nursery to high school which caters for all special children. We have just had our end of year review. The speech is still not there although he grunts and gestures for things he wants. He has started pinching and kicking. Thing is I feel so upset as the worst case scenario was laid out to me of what he could possible have to look forward to as an adult. I have been so miserable and upset for the past 2 days and am in denial. I think that any day he will wake up and everything will fall in to place and he'll start talking etc. I find I shout at him when he is doing things he shouldn't. He has no sense of danger and will hit the dogs and run away when we are out. When does it get easier? When will he start to listen and understand a little bit?

    I went though a list of forums when trying to get pregnant and the IVF route and Adoption which was a great succes. But now I am back on the forums. Life just doesn't seem fair. All you want is for a normal life for your children. Good job, happy marriage, kids for them but all of that now seems a long shot.

    Thanks for listening

    xxx

  • Hi Nikynoodle, After 3 years we have finally received a diagnosis for our 7 1/2 yr old son. Since he began school is has been obvious to us there were issues that needed help but we have had to fight our way through every person within the system. It is a matter of being persistent and keeping your Childs well being at the forefront of everything you do. My husband and I are now feeling so guilty as we were given incorrect advise on how to deal with our son due to incorrect diagnosis so we now have lots of reading and planning to ensure we an manage his ASD correctly. Stay strong and know there are people gon through the same thing as you. I wish we had accessed these forums when we started this process as you feel so alone going through the system. Keepi in touch you have an ear from me should you need one. Fieryphoenix

  • Hi Nikkinoodle29

    I'm new to this too , I really feel for you, it's difficult enough having young kids ,as wonderful as they are, let alone when there are so many questions wanting to be answered and there is no  real support. It must feel like an uphill climb especially after your mother's experience trying to get your sister diagnosed .

    My girl's 13 but I knew something was wrong when she was ten months old and couldn't roll over or sit up. *** feeding was a nightmare because she couldn't stand being held, I used to lean over her when she was sleeping to *** feed and if she wasn't aware of me she used to feed perfectly. She began walking at two and talking at four, that is combining two or three words. At nursery she would stand in the corner and scratch her face, the teachers would ring me to take her home because she was so distressed.  The gps continually repeated it was late development nothing to worry about. She developed obsessions with knives , spiders, mirages in roads, ordering all her pencils, counting, lining things up and standing on the edges of things, windows , roofs no fear of danger at all, she would run at moving cars, very scary.

    She has never been diagnosed, we live in a country where it's almost impossible, I so regret not pushing harder because in adolescence things are very tricky.

    Don't give up, it's worth it.

     Best wishes for you and your boy

    Kezercorn