My son was 4 years in May 2011 and I have been concerned about his development since he was 9 months old. He didn't display the usual signs of development such as waving, saying yes or no, pointing or attempting to say our name. He wasn't answering when we called either and seemed in his own little world. He loved tv then and still does but has always made lots of sounds. He has always eaten all kinds of foods and slept well. He is not agressive at all and is always very happy and chirpy. However he has got his own agenda and we are still struggling to change this. He has always been very affectionate and does pretend play. He finds it difficult to kiss us but will blow kisses when we request. He also finds it difficult to interact with people outside the family circle not because he avoids them but he just tends to blank them when they speak to him. He has got a lovely relationship with his big sister, interacts well with her and misses her dearly when she goes for a sleep over etc (she's 6).
I raised the concern with my husband, health visitor and friends when he was 1 year old and we did an ear test when he was 18 months and found out that he had glue ear. He had been going to a private nursery and was always sniffly and his stools were very runny so I did my own research and put him on soya milk. His hearing improved a few months later and I also decided in March 2009 to take him off nursery and hired a child minder. He had then been referred for speech therapy and we could then do the exercises with him at a calmer environment. The nursery reported that his level of activity meant that they could no longer cope with him without 1 to 1 support so I felt that that was the right thing to do.
He was seen by a Peadiatric consultant and we did a Ruth Griffiths test then which stated his age as 11 months, when he was 2 years of age. We put him in the system and applied for a certificate of special educational needs, so that he could start at the local school nursery at 3 years with 1 to 1 support. He attended his local school nursery for 2.5hrs a day, 5 days a week from September 2010 to July 2011 and he has shown signs of improvement. He has started to point at what he wants and is getting slowly better at remembering words but still at a very slow pace.
He stated at the special needs unit at our local school in September 2011, full time and he gets 1 to 1 support. He is in a small group and has settled well. We've got a plan in place for him and he sees a consultant speech therapist every two weeks. The teachers are being supported and guided by the head of the local school for autistic children as well.
As a mother I still feel anxious about his development and I wish that the school could involve us parents a bit more, especially give me more tips on how to deal with him at home. My son finds it hard to switch off from activities and getting him to acknowledge me when I come from work is usually hard. I need tips on how to do this. The school and health visitor tell me that I need to let him relax after school and allow him to do what he wants (within reason) as he is put under pressure for so many hours. They say that all I need to do is be a mum and do things that normal families do... like go to the park with them and just act normally.
I have read a lot about applied behaviour therapy and the son-rise programme and feel very confused about all other possible options, all private and very expensive, when he is already being looked after by the NHS. When I mention other options, my health visitor feels as if I am not grateful for what I'm receiving which makes me even more frustrated... I haven't seen my son's speech therapist for over a year, but the school says that she visits my son every two weeks and leaves them with goals when she leaves. I have put him on a gluten/casein free diet since September 2011 and he's shown some improvement but we still don't know whether it's due to starting school full time. He will have a cromossome test this month as well but at the moment it's all very daunting to me. Doctors haven't been able to diagnose him yet because they feel that my son is too complex and doesn't tick all the boxes for autism. He is not potty trained and although he knows how to use cutlery, he prefers eating with his hands. His gross and fine motor skills are excellent and he is very clever with puzzles and IT. He has no problems with routine and no tantrums. He doesn't answer questions such as 'what's your name' or 'how old are you' but he understands what we ask him to do and follows instructions 100% better than this time last year. He still drinks from a beaker as he tends to tip his drinks over. He plays hide and seek and ball games with us and likes our company as well.
Well, sorry for the hassle but I am shooting at all directions at the moment and don't know what to do. I'm worried about him every moment of the day and everyone else things I'm just fussy. I think he notices that and that this also impacts in my bonding with him. Any advice would be appreciated...