Introduction and advice please

Hi,

This is my first post on this forum; or any forum for that matter. My name is Will and I am father to a beautiful little man called Jacob. 

I am at work so will keep this condensed for now. My niece and nephew are both autistic one is 17 and one is 12, so I have grown up with a good understanding of the behaviours and traits displayed to a certain degree. 

I noticed certain traits in my son from as young as 6 months old; I couldn’t really explain it, but I had a gut feeling he may be autistic. Anyway he is now approaching 2 in Feb and my feelings have been pretty much confirmed. He does not speak at all, flaps his hands, can become very distressed with certain things. I wont go on as those are not the issue. 

He has not be formally diagnosed yet, but has been in constant contact with health worker and now speech & language. She has referred him to paediatrician who will proceed with his care and hopefully come to a conclusive diagnosis. 

Ok so that is the summary; the reason I am here is of course for support, to know I am doing the right thing with my wife for our boy. We both work full time and it is hard leaving him. He is the most wonderful, loving little man, and is such a good boy. He has the odd meltdown, which is very upsetting, as only myself or my wife can calm him down.

At present his grandparents on both my side and my wife’s side split the child care during the week. This works well, he loves his grandparents and they have come to know how to make his days comfortable and as happy as possible. 

The big question I have is nursery. We tried when he was younger and he was beside himself, it was heart-breaking so we took him straight out. We are now going to try again when he hits 2. Just 3 hours on an afternoon twice a week, so he can integrate with other children. This terrifies me, it is fast approaching and I don’t think he will cope. He would be fine as long as one of us was sat in the room; but to be on his own for that long really scares me; I think he will get very upset. 

We have visited and he enjoyed the room, was ok with the lady there, but his mam and dad we present which is the huge difference. So really I was wondering if people could share their experience with nursery please and any advice. It would be greatly appreciated. He doesn’t have to go at 2, but would we be doing the wrong thing to not have him go? Myself and my wife just want what is best for our boy.

Thanks

Will

  • Thank you very much for your kind response. Jacob does not point yet or speak at all. I will take on board all advice, thank you.

  • Hi Will, I'm Bill, although a responded reply on a different "Family and Carers" Forum topic refers to me as Angry Man. to my "Help" with a perceived Problem. I don't Mind. I've been thinking that Thomas the Tank Engine may be a bit old for Jacob yet. It is quite normal for even non autistic children to follow the story being read and should you miss a word out, or as you say turn two pages they will correct the story as they know it. 

    Don't worry about Jacob having to learn a "Normal" Curriculum as other Children. In Norway for instance, they don't start school until they are in their 6th Year. Your son learning coping with the world is the object. Without becoming stressed by any living problem.

    Learning to communicate, possibly depending on his personal disability, is the Primary objective and it seems that Pepper Pig is absolutely fine., and as you say exhausting.

    I can only suggest that the General excitement of Christmas be modest It could be overwhelming. Keep it simple and as near normality as possible.

    I expect that If you had a simple Tape recorder such as a Bush to record your reading his story.  He could get the story at the touch of a button, when you are tired. He will like eventually to record something one day and then start and stop on a particular section to repeat it endlessly, an autistic behavior. He will eventually get through endless electronic goods, because they are so fragile, Tiny hinges on the Tape or CD cover is usually the first to go. I tend to buy my son's needs from Argos they have a reasonable returns policy for 1st year and you can buy Insurance for a second year usually a must if item is expensive.

    My son was in Nappies until seven, and has never really been toilet trained in his younger days, today better but there are mishaps, learn where the Handicapped toilets are and buy a couple of RADAR keys for emergencies.  

    Inquire locally at your Council run Leisure centre, they may have special swimming sessions for babies in special nappies, but other children crying would upset my son, so see if there is any special handicapped sessions such as a Saturday  between 12-12.30 ours are free, and they may take a baby in a special nappy. with you assisting. some handicapped children make a noise, but it's not a baby crying, that really upsets my son.

    I hope Your family copes, but best of luck. 

  • Hello Will and Jacob, 

    my son has just turned 3 and will start pre school in January.

    I cannot advise you my experience because we haven't got there yet but I wanted to say that there is no pressure for you and your family to feel that you should send Jacob to pre school at 2. 

    If it doesn't feel good then try again in a new season.

    Before I considered becoming a parent I knew I would like to keep my child with me for as long as possible and pre school would start at 3.

    My son has no grandparents or aunts to help with interaction so it's been all on me to be them all and you know what... he's fine. I don't think you need to feel sorry that your keeping him from going. They are in school for a long time.

    At 2 my son wasn't ready for pre school, he was hardly speaking and just got the idea of pointing. 

    Now he's just turned 3 and his speech is coming on slowly, I'm confident he will be ok now. I will let you know.

    I will miss him dearly but I know now he needs to be with other little people his age and learn from them how to get the grips of social interaction.

    My personal opinion is that our babies are only little for a short time and it's lovely to have them with parents and careers if it's doable.

    The preschool I'm using is relaxed and parents are offered to come in when they fancy it and help out, get on the committee, stay for a cup of tea if child is quirky that day. Have a chat to yours and see what they are like in regards to you being involved.

    Ive learnt that there are different types of preschools....some are all about getting them ready for school, some are just all about play, some are just right for certain characters.

    ... give yourselves a pat on the back and just go with the flow. :)

  • Thank you for taking the time to reply. It is very helpful. 

  • It is natural to protect them! My daughter didn't start until nearly 3.5 years old as she just couldn't handle it and nor could I, we don't have the issue with hair cuts luckily but brushing it and washing are always fun she can't stand water near her face even a stray drip leads to hysterical tears and trying to jump out the bath, it used to be worse as we couldn't get her in the bath! 

    As I said go with your instincts you know your child the best.

  • We are so protective over him. I don't want to be too smothering but I worry every minute I am not with him. He is such a lovely little man. You have really hit the nail on the head about his books. He adores them. We have set them out in sections which he likes, so he has touchy feely ones, musical ones, pepper pig ones, and then bigger ones with pictures of animals and so forth. No exaggeration he can sit on my knee or my wifes knew for an hour whilst we read the same book, he turns the pages and gets very excited. If a page gets stuck together he knows to go back. However if we get tired of reading that particular book and he is not ready he can get very very distressed. Thank you for taking the time to respond, any advice is greatly appreciated. This is a really hard time because I feel we are in limbo, I know in my heart 100% no doubt he is ASD but we have to wait for a formal diagnosis.

  • Thank you ever so much for your kind and helpful response. My gut is telling me he isn't ready, but I don't want to be acting out of selfish reasons because the thought of it terrifies me. We have to cut his hair for him, we bought silent hair clippers and we make a night out of it, it take ages haha. But it is so much better than the hairdressers, we tried 7 times, and each time was worse, my heart broke. It wasn't him being naughty he was distraught, I thought he was going to be sick he was crying so much. Me and my wife said until he understands what is happening we will cut his hair, which he still doesn't exactly love, but no tears...just runs away haha :)

  • As a Parent of a severely ASD son, different from birth in behavior from his older brothers and sisters.

    while your son exhibits ASD symptoms you probably, according to this website and my experience, will not get a definite diagnosis until around 3-3.5 years. Then you can get  funded special schooling some how.

    Your son has to make sense of his world to the best of his limited ability, this is what he is trying to do, and his frustration triggers the behaviors you see.

    He most probably has no understanding of, and the concept of language how it works to communicate his needs.

    Sending him to a nursery will not help him. he will be at the mercy of "Normal" children each seeking how to dominate their own situation, but with fully life developed protective measures for their own survival. Your son will not be able to compete. He will need specialist education to help him and this will need to be funded by your local Council. He needs family, who may understand his needs for love and protection. To the outside world he is a Costly Package when you might get help. Always seek help from the CAB or NAS maybe in trying to deal with your Council. Perhaps they have a funded special nursery.

    He will need repetition of simple matters for his sanity.   He will need a simple story book like Thomas the Tank engine read to him. the same one read many times,  He will like it I expect because, it is a make believe world and repetitious..  

    so start with the first simple stories. He will eventually go through the lot. even at times when out shopping having to buy the same book several times, because he sees it in a shop and wants it. or a tantrum. He will not understand the Language but the "Melody of your speech". and learn the words. He will probably like a simple Tune as a melody.

    He may eventually teach himself to read and write in seeking to break out of the "prison" his mind is trapped in, but not understand a word of what he has read or written, because he does not understands the Language, but as he gets older gradually he will understand more and more. It just depends just how his ASD affects him, You can perhaps judge this by looking at his autistic cousins. You are fortunate to have the help of his Grand Parents.  He is your child not theirs, but you could ask them as to other relatives they have, who were thought different and perhaps hidden away from society, 

    I am 79 and my wife is 77 we are still caring 24x7 for our autistic son  of 35 as Unpaid Carers of last resort.

  • Hi, 

    I don't think you would be wrong if he didn't go at 2, it does depend on the child! Mine have all been different my 8 year old (undiagnosed asd) hated being separated at playgroup she would scream hysterically for about 45 mins she still doesn't like the initial separation from me when she goes in to class in the morning although she does settle quickly now. My youngest daughter literally couldn't wait to start and never had any problems. 

    It is really up to you and your wife when he goes it may be worth trying to see if he can manage it and if not defer it for a year or until he has been diagnosed and possibly consider a specialist setting.

    It is clearly obvious that you are a devoted father who wants the best for his child go with your gut if you feel it's to much then wait.

    Good luck 

    Josie