Minxygal

We now have a website www.themazegroup.org Sorry I havent been around muchEaster seems to be the holiday from hell in our house for some reason

Aw thank you everyone. To be honest it's been a scary, but exciting time as we're going for charity status and the commitment of the drop in centre is a big step on from the support group. However with everything I have been through with my boys and learning about autism and learning to live with it the chance to make a difference to other parents gives reason and purpose to all we went through and I needed that for me. By the way The Maze name came from a conversation we once had about the maze of information that parents have to find their way through when a child is diagnosed. Our logo is a maze with a rainbow in the centre. The rainbow represents our beautiful children and we hope that our support will help parents find their way through their own mazes to the special child we all know is at the centre of it all.

After a year of hard work yesterday we opened our drop in centre for the first time. We started a year ago self funded, parents supporting other parents, we've had some funding now and through this the drop in centre in High Street Arnold, Nottingham has been born. We support parents of children on the autistic spectrum and one of the things we provide is a quiet, safe space to talk to other parents and access support as well as help with form filling, internet access and a book lending library. For anyone living in the Nottingham area we are open 5 mornings a week, Monday to Friday 10am till 1 pm

Had to laugh, just taken a look and my son has been on there, added a joke along with an explaination bless him....lol Thanks for the comments....Hi Smiley hope all is well with you, hope the birthday was a good one sweetie xx

I've been under pressure from my son to put together a forum for my Aspie Son to make friends and talk to other Aspies Well we've finally finished it, its called the Jungle and there is a games arcade attached to it too which should be fun There is a hidden section for the kids to talk about their aspergers and that sort of thing, but fear not I do have access and will be keeping an eye out. If any of you have kids that surf the net then they are more than welcome to register. Welcome to The Jungle

We'll see In a minute Because I said so Its your brothers turn!

I'm doing a talk at our local hospital group on coping with more than one child on the spectrum. I'd love to hear a few views from other parents who like me have more than one child on the spectrum, in particular I'd be interested to know how YOU felt when you recieved a second diagnosis for another of your children and whether it effected you differently from the first and also how youcope with more than one child on the spectrum. Thanks in advance Mandxx

Erm....I'd be really cautious of this list if I were you. Am I the only one that thinks this could be used to monitor your parenting rather than the behaviours of your child? I'm purplexed by the use of the word 'hassle' too, just doesn't sound appropriate to me. Sorry, but you did ask!

Feel the need to add....WHAT WIT SAID...lol!

My Son assaulted Santa We took Mark to see Santa and santa asked him what he would like for chirstmas and Mark told him a burnt out car. Well Santa smiled and said he'd see what he could do, reached down and gave my son a wrapped present which Mark unwrapped. But....It wasn't the burnt out car he had asked for, it was a set of juggling balls. Santa got quite a shock when my son attacked him accusing him of being deaf and stupid We can laugh about it now, but we no longer do a visit to Santa! This year Mark has asked me not to wrap his presents and although I was disapointed at first I then found out a school he had been stressing as to whether the cellotape will damage his gifts. So we've negotiated and he's having them unwrapped but in a huge santa bag.

I also meant to add that a very wise person once reminded me that an 8 year old child has only experienced Christmas 8 times, no wonder it's still so new to our kids!

Surviving Christmas This is a leaflet that we put together at our support group. Hope someone will find it useful. Getting ready for the big day! During the lead up to Christmas there is a lot of preparation for both parents and children. Because of the added excitement and the changes it may be helpful to think of the difficulties that those on the autistic spectrum may experience. For example: * Shopping - Noisy, busy shops, streets and transport *Christmas Carols - Strangers at the door *School Activities - Nativity Plays, carol concerts, parties * twinkling lights - over stimulation * Family/friends parties - new people, noise different foods strange houses * Different religious ceremonies * Talk of a strange man with a long white beard coming in the night Christmas day is traditionally a day of festivities ( depending on individual beliefs) giving and receiving of presents and high expectations of everyone being happy and jolly. But for a child with ASD it MAY be experienced differently. * Excitement/noise/ presents * Broken structure - No school, parents at home, visitors * Broken routines - different food/ mealtimes * Everyone hugging and kissing- getting too close to the child * Meeting distant relatives that may have been forgotten about for a year * Our Own expectations that everyone should be happy * Everyone tired - Big build up. late nights * Stressed Parents - worrying that everything will be ok, the expense incurred, has anyone been missed out? HOW CAN WE MODIFY 'OUR' BEHAVIOUR??? As the child with ASD has difficulty understanding the world and it's peculiarities, it's up to us as adults to try and modify OUR behaviour. By trying to understand the difficulties that children with ASD experience when there are sudden changes to their routine and their daily structure becomes distorted, we may be able to help them go successfully through what could be a very upsetting and difficult time for them. Therefore we need to think about the following.... * Everyone working together, towards the same goals * Prepare the child for changes * make changes as minimal as possible * Keep as many routines in place as possible * Keep the structure of the day as near normal as possible * Be aware of our own expectations * Remember Christmas can be a difficult time for our kids * Include the child in the preparations * Take time to explain what is happening * Try to remain calm The point about our expectations is really important. Christmas doesn't have to be perfect you know. We all want the chocolate box Christmas, but it only happens in fairytales. Have more realistic expectations, in many cases surviving Christmas is an achievement in itself. Try to put yourself in your Childs shoes so that you can work out what it is that?s making them behave in a particular way? What is this behaviour trying to communicate? Makes sure the kids get enough sleep, don't do anything that over excites in the evening. Watch what they are eating, just because it's Christmas moderation and limiting some foods is still important. A few little other things??.. If your child needs reassurance that you have bought the gift that they have asked for maybe it wouldn?t hurt to show them just to remove that stress. Don?t spend a fortune on things that you feel are age appropriate and that you want your child to have, even though they?ve shown no interest in them. It will be you feeling bad when these toys are thrown in a corner or broken at the first opportunity. There should be no strict rules at Christmas, do what works for you and don?t try to do what you think everyone expects from you. If your child can't cope without reassurance that he has what he's asked for Christmas, find a way of reassuring him. So many people see Christmas as having rules that we all have to follow, I think for many of us living up to other peoples expectations is often the hardest part of Christmas

We tried this with Mark for his agression but it didn't help much at all and in the short time we trialed it he pot on loads of weight. It was important for us to make the right decision as to whether to keep him on it or not because with it not being effective the weight gain meant he was harder to handle. In the end we chose against it and are now trying something that is more of a sedative.

Could it have been sensory overload? so many of the kids are suffering st the moment with Christmas around the corner and all the changes that go with it.

Not sure about the training, but I have real concerns about the number of headteachers taking on the role of senco. In principal it's a good thing as the head should be able to find more time to fulfil the role. I am uncomfortable though with the holder of the purse strings being the one who should be fighting for the needs of our kids.

For me the family disappeared like a speeding bullet when my boys were diagnosed and so did many so called friends. My brother in Law was at least honest enough to tell me straight out that the reason they never came round with their kids was because they didn't want their kids to copy mine To be honest not having family turning up unannounced, especially at this time of the year has been heaven sent its a hassle we find difficult to cope with. Saying that I have a huge extended family, all of them friends and I think all of them have children with special needs. I love the fact that my friends never even blink of one of the boys kick off and I'm proud of the fact that it's the same with their children. I could live without my biological family anytime, but never without my friends.

Yoyo I think I know what you mean. My husband grew up with no confidence at all as his family thought he was a clown and only good to laugh at. Since discovering he was on the spectrum I have watched his self esteem grow and I've looked on with pride as he has slowly let go of so much of the past, a past which made school feel like a prison and which told him that different was bad and he should feel ashamed of it. The relief he seems to have got from knowing that there was a reason for him feeling so different as a child and as an adult has made all the difference to him. I find now that pointing out when he's not realised I need help or the boys need something from him is much easier than sitting and waiting for him to get it. For me it's helped a lot too. I spent many years pulling my hair out trying to work out why I had to ask him to be with me or with the boys or why I could cry and he'd not even notice. It's helped me a lot knowing now it's nothing personal.

My hubby is very high functioning too and as you said it does explain why whenever we had a disagreement, or should I say I had a disagreement lol, he just stared into space. Now we don't argue because to be honest I put my efforts into something else because rowing with him is not worth the hassle. That said it's hard when he kicks off with the kids instead of being there to help me de-escalate a situation. I sometimes wonder how many kids I actually have

A good friend of mine wrote this and gave me permission to post it on here, I hope it is helpful to someone Is your Partner on the Autistic Spectrum? You?ve been through the ups and downs of getting one or more of your children diagnosed with Autistic Spectrum Disorder. Maybe you or your partner have noticed some similarities in the way, they themselves behave. For your partner to get this far without a diagnosis probably means they are at the higher functioning end of the Autistic Spectrum or they have Aspergers, and through the process of time and learning they have been able to hide a lot of their traits to the outside world. Once in a close intimate relationship though this is much harder for the Autistic person to do and you may have picked up odd behaviours that don?t seem quite right. On an emotional level your partner may find difficult to deal with you when you?re upset. The lack of empathy makes it difficult to place themselves in your shoes, and they may be looking for some clue as to what they can do. They may look at you almost as if staring as they try to work out what is required from them or the sense of powerlessness maybe too much for them to deal with and you may find your partner walking away or turning the TV up when faced with such an emotional situation. Your partner most probably has some sort of special interest, this maybe computers, a TV programme, the list is endless. It maybe that the job your partner has chosen to do is also a special interest as they put their heart and soul into it, working long hours and talking about it at home. It is important for you to understand that their special interest means a lot to them and ultimately helps them function within society. Your partner may have more than one special interest. You may be in a position where you are also seen as one of their obsessions. This can be wonderful in the first throws of the relationship, which is ultimately why we fall in love with them in the first place. You are the centre of their universe and they want you to be happy. You though are an unknown quantity and they will seek ways in which to control their environment including you, this can also have the opposite effect where they put you in control of them. Change, usually of the environment of which they have learn?t to feel safe can cause problems for your partner. Things like change of d�cor, new furniture etc or even just the tidying of their workspace can cause a lot of stress for them. To avoid such situations they need to be consulted and a date or day agreed as to when this is to happen and is best done on a gradual basis rather than a full-blown makeover. Of course we are all human and even our best intentions don?t always work out, try not to see this as a failure on your part your partner will get over it, it just takes more time. Discuss how their Autism affects them on a basic level, this may take some time to process and is best dealt with in small bite size chunks. You may need to come back to the same subject at another time. As you are probably already aware, Autism affects the senses and your partner may be in situations where they have sensory overload. Such as too many people talking at once it is difficult for them to filter out these other distractions and may find it almost impossible to talk to a person in those circumstances. On a more basic level, you may have an argument or a disagreement with your partner, it is important not to shout at them, as you will find they are not even listening to you and have completely shut down. If you ask them about what was said at the time they will not remember, as they simply did not hear you. All adults and children on the Autistic Spectrum are individuals and experience a vast amount of different traits. The important thing is to work on what is required to help your relationship. You may need to make adjustments to help your partner feel they do not have to perform an act with you at home and give them the confidence to say ?I am having difficulties today I need some time out?. Having said this it is a two way thing and if you want them to do something for you or for the children you will need to be clear on how and what you want to be done. Don?t be afraid to say to them this is not acceptable but take time to find a way round it. I know you may sometimes feel this is too hard why am I making all the effort, this is normal. But consider also how hard it is for your partner to do stuff that comes naturally to you and me. Last of all we fall in love with this person for a reason try not to lose sight of that. Think of the positive qualities your partner offers.

Yes I agree with everyone else I co run a support group and we have a few parents there who haven't yet got a diagnosis and meeting other parents and sharing experiences can be a real help when you are seeking a diagnosis. Many people are afraid to take that first step into a support group, it can be a daunting experience but group leaders are aware of this and most will be happy for you to make contact with them prior to the meeting so that you have made at least one contact before you go. Being able to laugh and cry with people who know what it's like to walk a mile in your shoes is the best support available. Theres nothing more reassuring that being able to go into a meeting and say you've had a bad day and not have to elaborate because the people know what a bad day is.

James has AS with hyperactivity as the peadiatrician so nicely puts it. To be honest I rarely mention the ADHD, there seems to be less sympathy for ADHD than there is for AS, especially with the bad press that has surrounded ADHD recently and hyperactivity seem for us a much easier diagnosis to work with. Does it make a difference? No not really it just explains why my son is never still.

I'm glad you found this useful there is so little information on PDA available and even less for parents that you don't need a degree to read. There seems to be two trains of thought on PDA. Some think it's a seperate condition and not part of the autistic spectrum others including the NAS see PDA as being part of the spectrum and that it goes hand in hand with the autism for some children. I am very much in the second camp. My son has autism and PDA and it is the PDA that brings about the worst of the agression due to the intensity of the anxiety these kids carry with them. What makes me so cross is that for many children with PDA traits schools fail to recognise the PDA and these kids are labled autistic to a point and then willfully abusive and manipulative. This is really unfair and I would love to see a study done on how many of those children on the autistic spectrum that are excleded from school show evidence of PDA.

I once knew a boy who could memorise the phonebook, line for line. I suppose he could have been labeled gifted and talented. The thing is he couldn't use that information, he couldn't pick up the phone and make a phonecall.

I know a few children who are diagnosed as ASD with PDA traits and many of them have failed miserably in the mainstream system before being diagnosed and understood. I think the anxiety aspect of PDA and ASD is the most important part to understand as without it these children can be labeled vicious and manipulative when in fact they are controled by fears and phobias and anxieties. It's a complex subject and for me understanding the reasons behind my sons behaviours have been the key to supporting him.

Hi hun, hope all is well with you xx <'>