MandyB

Hi Ricky, really good to hear from you, but sorry to hear you feel so down. You seem extremely articulate and self-aware which must make it all the more difficult to feel alone. You have shown your willingness to put yourself out there on this forum, there must be other places near you where young people get together...how about contacting the National Autistic Society local group to see what is available for guys like you? Or look at your 'local offer' of services for yp on the local council website? They have to put stuff on there for people to find nowadays...just google 'local offer' and your borough's name and it should be there. Keep making contact, things will get better for you I'm sure, and if nothing else just know that what you've posted here is obviously heartfelt and shows a level of compassion that other people (but not maybe other mean kids from old school) will find very appealing about you. Good luck Ricky,

..yep about as steep as they come! For me it was about processing all the information and seeing that it fit with my little chap....it made me look at all the difficulties we'd been having in a totally new way and the realisation that he didn't fit the remit for all the happy-go-lucky parenting books I'd read was a huge relief! The moment i came to terms with Jamie having autism (way before an official diagnosis) I mentally packed up all my baggage of feeling like a failed parent with an impossible child and put it all in a box at the back of the shed marked 'history'. Suddenly all his bonkers behaviours made sense because they had a real cause which could actually be predicted and avoided when we started to know what to look for! I hope you will find the help and support you need, but know that just caring enough to seek out information for Calum makes him a lucky boy. Wishing you all the best. Mandy

Hello, your post rang a lot of bells with me! Sounds like you're in the process with the professionals regarding Calum. Wherever the assessment road leads you, I would like to offer that this is first and foremost YOUR chance to find out lots of information and begin the important process of whether or not Aspergers fits what YOU know about your little boy. Then you can begin to really help him and also get the right professional guidance. Read lots but don't get overwhelmed! Filter out what doesn't fit. Think of it as the start of a new chapter in a book where you were previously missing the synopsis on the back! With regards to a diary of behaviours, I found with my son (also aged 4 at the time and having trouble at nursery!), that when I started to look, I could see all the clues that had been there for so long.....a diary might help you to see the big picture but don't obsess! Also, you are doubtless looking at schools at the moment. It might be worth speaking to the school's Special Ed Needs coordinator (SENCO) for advice and to find out how the school can support Calum, whether or not he gets/needs a formal diagnosis. I wish you all the best as you move forward.

Hi Rhys' Mum! Your chap sounds just like mine!! He's 5, diagnosed last year with ASD, has a neurotypical 2-year old brother and we have all the same sorts of issues! We're very lucky with his school, they are being very supportive and pro-active in trying to get him a statement, but I know this is not necessarily the norm for everyone. Make friends with the SENCO as soon as you can! Playtime is my son's toughest time at school, and his teacher has been taking him to a quiet area when he's getting over-excited or pushy! He goes with her happily as he's ready for some quiet time which is good. Perhaps Rhys would benefit from the same - mine always runs around wildly with a big grin on his face, but actually is anxious and happy to get away from the noisy situation when given the chance. If someone at the school can recognise his "triggers" (and there's always a trigger!) this would help him escape and avoid getting to the hands-on stage. I wish you lots of luck and hope the school will be a help and support - and if not you've always got here! Best wishes Mandy B

Hi there, You certainly seem keen to find some answers for your son and that's got to be a good start! My son was diagnosed ASD last year aged 4 and a lot of his stuff is more "typical" I guess - although like you I see lots of things that don't fit the remit also! He sounds like a sweetie which I'm sure makes you more determined to help him and get him the right support! I would suggest a couple of books to help you in the first instance, firstly the well-renowned " The out-of-sync child" by Carol Kranowitz" - a great place to start as it's all about sensory disorders and not solely on the big autism question. Also have a look at the slightly-cuddly and American "Ten Things Every Child with Autism Wishes You Knew" by Ellen Notbohm. It really helped us look at our child in a different way, in order to look at his needs and issues, rather than focusing on what WE were doing wrong! Best of luck, Mandy B

Hi there, your little chap sounds a bit like mine! He's nearly 5 and the day to day can be so hard, isolating, boring, stressful etc etc. And he has a little brother too who seems to be the focus of his most negative behaviour! Mine's started mainstream school in September and that's a huge relief because he's tired at the end of the day and calmer too. If you can afford it (!) try occupational therapy, they can help with things to use up his energy and meet some of his underlying sensory issues needs if he has them (food is a biggie in this department so chances are he has others too!). Mine now loves spinning round ten times each way on an office chair. He loves it and is calmer after! Weird but it works! Anyway I know this isn't much to offer in terms of help but just to let you know lots of people will understand, you just have to find them! Try the NAS first for local groups. And push for that diagnosis! If GP not helping try Health Visitor or local pre-school support team (if he's not in reception already?). Thinking of you and understanding!!! Best of luck Mandy B <'>

Hi there, After my son was diagnosed, the centre where he was diagnosed offered help to fill in the form and it was really great. they helped me with language to use and how to look at each problem in it's "worst case scenario". It doesn't feel great putting down all the bad things about your child but if it helps with getting additional help financially, it's got to be worth it! Good luck mandy B

Hi there, Had to reply as your young chap sounds just like mine! He's 4 1/2, diagnosed in June. It was a strange relief to find that all the many embarrassing situations I'd been in and pressurized environments I'd exposed him to, desperate for him to "fit in" , weren't just a result of my failed parenting style or naughty child! I'd wish for him that this wasn't so, but at least now I can find answers and hope rather than flailing around in a sea of "What am I doing wrong with this child???!!!" I hope you will too! I wish you the best of luck on your journey! Warmest wishes Mandy B

Hi Andrea, I saw your message the other day but first chance to respond! I know just how you feel, the holidays just means more pressure for us to keep them amused and hope their behaviour doesn't make every small outing a complete nightmare! I have a son aged 4 recently diagnosed ASD and another little one 20 months who also needs lots of attention! It's so hard and makes me feel so lonely sometimes. Anyway I just wanted to say Hi and hope you will find "safe" things to do to make the days go by....roll on September.... Mandy B <'>

Hi, you sound so lovely! Sorry to hear you're having a hard time. I'll bet there's other girls at school that feel the same way you do, that can't articulate themselves as well as you do! Things can change, don't give up trying to make friends, sometimes they come along unexpectedly! Sending a hug <'> Mandy

Hungry

They can really surprise you sometimes with the stuff they can handle! Hope for us all Madme! Mandy B

Yes, that's it, you can only do one course not both! The next "plus" course is November so I could do either within plenty of time of diagnosis (only Dx last monday!!). But as jlp says they use video in your home on the pre school one (scary!) but this could be more beneficial. I'm just worried that there might be a big gap between 3 year olds with ASD and my 4 1/2 year old. (yeah, I know, he's more like a 2 year old at times anyway!!! Aaargh) Thanks for your replies, appreciate the input. And JsMum, at least we've got the forum to keep us up to date with stuff, even if your "little one" isn't so little now!! MAndy B <'>

Hi Folks, Just wondering who's done the Earlybird or Earlybird Plus courses for parents by the NAS? They seem like a great idea as we've just had DS diagnosed with ASD and looking to get all the help we can now! Our little chap is 4 1/2 and starts school in September. There is a space held for us on an Earlybird course for pre-schoolers starting September, but should we wait and do the Earlybird Plus course later on, as it's for 4-8 year olds? Which one would be more suitable do you think? Any help would be welcome! Thanks Mandy B

Hi Flora, it went well! Great doctor, knew her stuff, and she felt it is the right decision to give him The Diagnosis! I think we've been very lucky to get to this point in a relatively short time. The pre-school support advisor that first observed DS at play group had sent in a very thorough report and this helped enormously to get to referral stage. My little boy was so patient too, we were in there ages and he just kept busy doing his thing. My thoughts tonight are .....he has an asd.....OK so now what??? I'm a bit blown away by all the info actually and just need to get my head around it. It's good news isn't it??? Doesn't change my little chap and just means we can get the right help! Anyway feeling ok about it right now. Thanks for your message Mandy

Thanks all of you, some really good advice in there. I think on balance I'll tell him it'll be a bit like seeing the speech therapist lady - which he quite likes! but that there'll be different things for him to do. Will take his favourite toy maybe so if he gets stressed I can get it out and he can relax a little. Thanks so much I appreciate your time to answer and give some varied but very valid perspectives! Mandy xx <'>

Hi folks, just after a bit of advice please, we have a neurodevelopmental assessment tomorrow for DS aged 4. He displays lots of ASD traits and we're fairly certain he will be on the spectrum, especially after all the stuff I've been reading on here. My question is, do I take him totally unprepared for the meeting and have a "take him as you find him" policy, which could result in him having a hissy fit and refusing to go in, or do I do a little preparation work about what to expect? I don't want the poor little guy to be stressed but does it add credence to our case if he behaves as he might in an unfamiliar situation? What do you think? Mandy

I'd be interested to see it if you still need anyone Cheers Mandy

Wow, Julie, I so know how you feel! My DS is only 4 though and we're just taking on the reality that all his stuff is not "just a phase" - something I had been trying to convince myself for a long time now!!! The days can be so hard, especially with no family nearby to help. Isolated? yeah, most days. It creeps up on you......Let's keep battling on though I guess, and have a good rant on here. Take care, hope for a better couple of days to give you a break! Mandy

Hi I've got a post in help and advice and your reply really helped.. I'm new to this and it was great to have a response from someone who understands! Thanks for your input MandyB

Thanks guys, I really appreciate the advice and will look into getting more help... especially after another really awful day!! Thanks to JsMum especially as I saw you are leaving the site, thanks for taking the time to offer your experiences before you go and best of luck Mandy

Hi I'm fairly new around here but so need an outlet... Finding my 4.5 year old so difficult at the moment. He makes me madder than anyone on earth, and yet I feel so guilty that I should be feeling sorry for him and trying to understand his behaviour...when all I want to do is SHOUT STOP IT YOU'RE DRIVING ME MAD!!!! A thousand embarrassing interludes trying to encourage him to "fit in" with what the other kids are doing (before we had a clue what might be wrong), a thousand yells of frustration as he hits his brother then runs away or empties a toilet roll down the loo again, a thousand guilt trips that i'm not teaching him right... I feel resentful so often because I try to make things ok for him and yet he just behaves however the hell he feels like in the moment with no thought or consequence. I need to help him to make sense of the world but i don't have the energy day after day when nothing seems to change.... The summer is looming and I don't know how I'll cope. We're supposed to enjoy these days with our kids aren't we??

Hi there, I'm new too, and although I have a boy with ASD (as yet undiagnosed) I can totally relate to some of your stuff... it really does seem that every case has symptoms that fit and symptoms that don't, which makes it difficult to be sure until someone else tells you! Anyway good luck and hope you hear from a few folks with girls! Mandy

Hi guys and thanks for your warm welcome! I'm finding it hard to decide whether to tell friends about my son's likely Asperger's/ASD, so nice to have somewhere I can find other folks with some understanding of the situation, so I don't feel so isolated! Thanks again Mandy

Hi there, I'm totally new to forums so this is a new experience for me! I'm also totally new to the idea that my 4 year old may have Asperger's /ASD and am fumbling around in the dark somewhat! I hope you might be able to help me. His playgroup invited a local support co-ordinator to observe his behaviour and speech last week after I mentioned his difficult behaviour at home and lack of conversational speech. I was taken aback when she reported 3 key areas of concern after her observations - she was so specific about the types of behaviour that I felt she was guiding me to look into it rather than just blurt out ASD was what she was suspecting. Sure enough after looking up symptoms of ASD, my son described to a "t". I had just never put all his quirks and oddities into one over-all problem before..suddenly a lot of things made sense... lining up cars all the right way for ages, touching every car wheel on a walk into town, specific orders of things to be done to avoid tantrums, lack of chatting and questions. But yet so many things didn't fit and still don't- he makes eye contact and can talk in sentences about lots of things, he's had us and his playgroup all fooled for so long because he has friends and can behave perfectly "normally"! I think now he's just learned how to behave to fit in, and yet so much of it seems innate in him and he enjoys being sociable and making people laugh. My biggest problem with him is at home. He had a hard time adjusting to the arrival of a baby brother, and this hasn't improved in 16 months! He just can't stop himself hitting him/poking/squeezing. We've done all the usual discipline things but to no avail. I guess I thought one day he would just learn to love him and it would pass so they could play together. Now I'm not sure this will happen and I'm heartbroken that I don't know how to make it better. He does like to make him laugh sometimes but usually he just gets That Look and I can't stop him going over to give him a shove. My HV suggested social stories which we will try. Has this worked for anyone else in a similar situation? Anyway sorry to go on, I definitely need an outlet! Thanks for any help you can offer Mandy