I might have mentioned transport before but it is a subject that does crop up now and again regarding autism and other disabilities too. There have been a lot of cuts made by local authorities regarding home to school transport which can makes things difficult with an application.
I can see where the LA's are coming from as it is expensive to provide taxis for our kids going to and from school but it is a great means of support. Help regarding travel can come in other ways too, there is travel training available which helps support a young person gaining independence to travel, discounted travel cards and fuel allowances which probably works out a cheaper option for most councils.
It should be about every individual and how their needs can be met but that's not also the case. There seems to be a drop off in support as our children get older. I know there is sometimes less transport support for post sixteen's going to college and even more so post eighteen's too. Yes the chances of some people gaining their confidence and independence to travel alone is something that can eventually happen as our kids get older but not always.
If you need any information regarding home to school travel you can get in touch with SENTAS - Special Educational Needs Transport Advocacy Service. They are a non profit organisation set up to provide parents and young people with information, advice and advocacy around issues regarding home to school and college transport. They have a website here:
sentas.co.uk which has so much useful information on it and and option to contact them too if you should need to.
It can be a very frustrating time trying to figure out not only everything that goes with school and our young people moving to college. Their education is a lot to deal with when it comes to SEN even before thinking how our young ones are going to get there and back from their schools or colleges but there is help out there if you need it so do get in touch with SENTAS if you are struggling.
I hope that helps and if I have mentioned this before I do apologise for repeating it but it is quite important that needs are met and I do know some people have a lot of problems in this area so it is good to just review it again.
Thank you so much for reading today. I will be back tomorrow with Pass the remote Sunday but for now.....
I saw this information about Spectrum Live on the National Autistic Society and thought it may help if you are facing diagnosis, maybe you are just going through the process or you are still waiting for an assessment.
If you go along to the NAS Facebook page and give it a like you can join in on a live discussion about diagnosis. It takes place Wednesday 13th March at 7pm. I think this is a great way to grab all the information you need and answer all those questions that are going around in your head.
They will be covering the different routes you can access for a diagnosis, what an assessment should look like and you can also join a campaign to help reduce the waiting time in which people have to wait for their autism diagnosis.
You will be able to submit your own questions too so I will leave you with a link to the National Autistic Society website with all the information about the event, how to access it and how to submit a question in advance.
Please think about taking part as even thinking about going for a diagnosis came seem a bit daunting, the wait can be frustrating so you may get some welcomed support from others here. They will be talking to autistic people and families on what it means to get a diagnosis so you will get information from people themselves in a similar situation to you or who can give you an insight to what will happen further into the process.
Just think of it as a little support group taking place in your own home, technology nowadays, it's amazing eh? So here is the link......
Thank you for taking the time to read my post today, please join me again tomorrow for some telly talk on Pass the Remote Sunday but for now I hope this helps and you all take care now.
A few weeks ago I caught sight of a tweet which was in fact a survey to find out what autistic people would think if their neurotypical parents referred to themselves as autism mum/dad/parent. Well this intrigued me as I had actually referred to myself being an 'autism mum' on a couple of my social media profiles. I know......oh heck I'm having to confess here but bear with me as I would like to explain why.
I don't really consider myself to be a neurotypical parent to start with so I suppose one reason for autism mum is that I am choosing to self identify as autistic without a diagnosis. That's probably another debate for another day but that suits me. The other reason is that of course my boys are a huge part of my life, I love them more than life itself. I am a single parent and Autism has been a massive part of our lives but I also help to support other families too as a volunteer with the National Autistic Society Derby and District Branch.
So you can see my life is full of Autism and I love it, I never mean to centre myself in it at all but act as a buffer for those who need me. I've never referred to myself as a buffer before but I do remember when Mr T received is diagnosis, for some parents this can come as a bit of a surprise sometimes and leave families a little lost at first. The thing is though when we do hold support groups, everyone in the room whether it be parents, carers, autistic people or those working in the health sector and education, they all feel passionate about wanting the best for their young people or for themselves.
So for me being an 'autism mum' meant that I was a mum first and my world revolved a lot around autism in a good positive way so I wanted to put that out as a beacon for everyone to be able to connect too. I have read all the comments though relating to the twitter survey and found it so enlightening. I had no idea it may not have been a good way to identify oneself and can see it would be slightly wrong coming from a neurotypical person but I have still since taken the decision to change my profiles in light of this and would totally respect the way in which this would make other people feel.
I do hope that explains a little why I did give myself the name of 'autism mum' and I hope it all makes sense. I have probably totally over thought it as I tend to over think all sorts of things but I just found it very interesting. This is what I do love about social media, we can have a healthy debate and give views and opinions, sometimes we just need to make people aware of what they don't know. Every day is a school day is what I say to myself, we are constantly learning, even as a middle aged woman like myself.
Thank you for reading today, please join me again tomorrow for Pass the Remote but for now you all take care.
I'm really proud of Mr T this week for making a decision by himself and choosing whether to take part in an activity. It is difficult for autistic people to contemplate whether to choose an activity as they involve a lot of social interaction which can be exhausting. I know for myself I find some events a big challenge but then end up feeling happy that I gave it a go.
I work myself up to some events thinking it's going to be worse than it really is even to the point of high anxiety but then it never seems as bad and I end up wondering what I worried about so much. It's the fear of the unknown, sounds like a tense scary movie eh? No really in some cases I have to visualise the whole event from planning the route to get there (in detail), making sure there is somewhere to park if needed, I will result to the bus or a taxi if it's all a bit too much and then I like to know the layout of a venue too so that I know exactly what's what. OMG if it's somewhere I haven't been before then that's a major issue. I have been known to give a place a trial run before the real thing.
Oh bless Mr T and his venture into an activity if that's what his mum goes through. He hasn't really been big on going to any after school clubs or activities and although I have encouraged, I've never made him go anywhere because as you can see I know how hard it is. Mr T announced he was going to go and try a choir session held at college on a lunchtime so I thought this would be great for him. He had sourced it out or been asked and decided yes, he was going to give it a go.
I went to pick him up after the session and asked him how it went and he didn't think it suited him, he said 'just pick me up at the normal time next week'. I quizzed a little to see what the problem was, not too much as he doesn't always want to talk about things but I did get to the problem. The choir was for the whole school to take part rather than a small choir from the part of the school where he was studying for Post 16's. This meant he would have to interact in a mainstream environment which I don't think he felt completely comfortable with and found it a little overwhelming.
That's ok though, the fact is he made a decision he was going to try it and found out for himself whether it suited him or not. Maybe there will be a chance to join something else in the future but it's a start. I suppose this post continues from last week with the decisions that we make but again we have to try. Fair play to Mr T, for now we will carry on singing our heart out in the car to The Beatles and for him a choir is on hold but hey our choir of two is fabulous for now and very funny.
It's only funny because I get the lyrics wrong sometimes......yikes I bet John Lennon is tutting at me from above and if Mr McCartney is reading this (yeah right) then I do apologise but just so you know, I did bring my son up with a great taste in music and he gets all the lyrics right!!
Thank you so much for reading today, please come back for more tomorrow when it's time for Pass the Remote but for now.....
I was reminded of a funny memory the other day. It is one that crops up now again especially when there is a time of deciding what is realistically achievable for an autistic person.
Well for me it is learning what is possible and sometimes the only way to learn is to give it a try. A while back when Mr T was still at school he went through a stage of saying ' I can't do that I'm autistic'. I think they may have been having a project about autism at school, I can't quite remember what exactly triggered it off.
Whenever I asked Mr T if he would tidy his bedroom he would say ' I can't do that I'm autistic' or to finish eating his dinner, the same thing ' I can't do that I'm autistic'. I do remember at that time having to have a re chat about his autism with him to try and grab exactly why he thought he couldn't do certain things. I explained to him that yes he may struggle to do some things but not everything and sometimes it is good to try new things.
So he realised he could eat his dinner, except for certain foods and textures he doesn't like but he will try new foods. He will tidy his bedroom now because he realise it's a help to me and it is actually important to be in charge of his own space. He is a teenager and his bedroom reflects that like any other teenager but I haven't heard him ever say that he can't do anything now because he is autistic.
In fact just last week we discussed the possibility of being assessed for travel training. This is a scheme set up to enable people with disabilities travel by public transport. I know, if you're a fellow parent you may be feeling my pain right now because in one way I need to let him go and try and the other part of me is shouting 'OMG there is no way it could be possible'. It is finding a balance of of what is achievable in a real sense and thinking it's a cruel world out there sometimes and Mr T won't be understood.
There are other worries which I'm sure are quite normal such as a bus not turning up on time - would he be able to ask for help? All things that we think about but how do we know unless we try. He would go through an assessment to see if he could go for the training and then if they say yes then he would be taken through the process of travelling over a period of time until he can do it independently. When we asked Mr T whether he thought he could travel on a bus his reply was ' who knows, but sometimes we all have to try'.
So we will see, he wasn't too keen when we first asked him but then I think he mustered up some confidence and wondered what the Fat Controller would say. If you do watch Thomas and Friends you will see that there is some brilliant scenarios which result in a positive empowering message so I can't fault Mr T for watching that at all.
It is difficult to make decisions for any of us and we all question ourselves as to whether we can do something. For our young autistic people we have to be there to give extra support but try and unravel a little of that cotton wool we so want to wrap them up in. It is hard.
If you are in the Derby City Council area and would like further information about Travel Training then you can find it here:
Thank you for reading today, please join me again tomorrow for Pass the Remote Sunday but for now......
Well I started off the week with a review meeting at college for Mr T's Education Health Care Plan (EHCP). Do you ever get to the night before and completely forget to have filled in a form? How many times have I said to my kids not to leave homework till the last minute and there I was not taking my own advice and frantically plucking my views out, here there and everywhere.
Any form filling tends to blow one's mind slightly, but they have to be done. I was thinking of saying that my homework was eaten by the dog but we don't have a dog and that's just not right at all. Anyway paperwork was finally in order and we had a good chat including Mr T and together we discussed the support he would need to progress. We also talked about his future plans for moving to a different venture in September. I think we all felt that there are a few options that we, as a family could explore and support Mr T with what he wants to do in the future.
I finished the week with two lovely support groups. We had a change of venue with one group but it was well supported by the school and there we had a few good discussions. Today's meeting was another well attended meeting with quite a few good topics to chat about. The EHCP came up quite a bit this week, it must be review time for a lot of families and we also had people who were new to this information too so together we helped each other and it just felt like a great positive morning.
If you need any information about the EHCP then you can find more information here at www.ambitiousaboutautism.org.uk/understanding-autism/education/statements-and-education-health-and-care-plans
So I feel a lot better now than I did at the start of the week mainly because I have talked to different people and not only got the support I felt we needed but also have been able to chat to others and help them too. You see as a parent I can feel stressed because I am so desperate to get the best support for my son, he can't make a lot of these decisions by himself so we have to help him to make them and I feel so lucky that I have lovely people around to help.
If your head feels a bit like scrambled egg then don't worry, it's all quite normal to feel a bit anxious as it shows you care but please chat to someone and to help iron out those lumps and bumps. Eggs are fabulous scrambled but sometimes we just need life running like a nice smooth omelette.
I have never referred to support using eggs so that's a new one on me, hope that made sense, if not then it's just my brain thats 'fried' (ha ha see what I did there?) I'll go now because the egg jokes are getting silly now.
Thank you for being here and reading today.......please do come back tomorrow for Pass the Remote Saturday but for now......
Yes!! We held our first support group of the year as part of the Derby Branch of the National Autistic Society this week. We were back at The Farmhouse Mackworth in Derby who do a wonderful job of providing a venue for us to meet and the atmosphere was so nice.
It's good to back and even better to be here for people to be able to receive support. We started the evening with just one person and then after a few minutes we had so many, our little circle kept getting wider. It's always a bit difficult to know how these little 'get togethers' will work out. Will everyone want to discuss topics as a group or in individual groups? We left it to people having their own small discussions which seem to work out fine.
I think each small group had a representative from the branch with them and I hope they were able to get the help they needed or just a bit of comfort from us all. There were some battles being fought and newly diagnosed family members even some thinking of supporting family members with an approach to a diagnosis so quite a mix of subjects to cover.
We didn't have a speaker this month so it was just a chatting session and when I stood back and looked for moment at this room of people it was so satisfying to be able to provide this as a branch. It's simple really, just a room, a few brews and people who, although don't realise it as parents but are champions and professionals in their own right, whichever stage of the process they are at.
I think Autism can sometimes bring the best out of a situation, yes there are tough times and it was clear listening to peoples stories here but with the power of speech and the camaraderie between us I think we felt we could conqueror battles or certainly try and put each other on the right road to deal with any problems. I love it!
Remember if you are struggling, seek out your own local support group or if you can't find one maybe think about starting your own. You don't need qualifications just a few people to get together and talk. Who knows, when people find out about your small group more people will join you and away you go - a support group. Big or small they work in the same way, you could even meet in a local teashop or cafe so it doesn't need to be expensive by hiring big venues. The people make the groups not so much the location.
Well a great start and I certainly enjoyed it. Thank you so much for reading today. Please join me again tomorrow for Pass the Remote but for now......
There was an article just recently which a few people seemed to have mentioned to me about a firm in the U.S called Auticon where all the staff are autistic. It was a news item by the BBC and I will include the link for it at the end of this post.
I love seeing these stories where parents have supported their kids in finding the right education place or work environment. If it hasn't been the environment which is right, I love even more that the parents go and make the correct place happen. There was another news story very similar to this a while ago where someone had set up a car wash scheme and employed all autistic staff. You also have people like Anna Kennedy who struggled to find a suitable education for her to sons and then went out to raise money to start a school for children in a similar situation.
It's so inspirational to see and also it gives us parents the hope to have that place where , yes our kids can get an education and fulfil employment but be safe and happy while being there. That's what it's all about really, making sure people are happy and comfortable in their day to day life whether they choose to work in an all autistic workplace or finding inclusion within other places too.
I just like to see everyone happy and settled. You can see that these places work, the environment with Auticon seems very relaxed and everyones needs seem to be met. How cool is that? It is also a chance for autistic children to grow into autistic adults and know they can use their special interest and be successful. We so need to tap into this intellect and passion autistic people have because it makes them not only an asset to any company but for them to be able to fill their dreams.
Anyway if you haven't seem the article take a look at it here:
Let me know what you think, does it make you feel good when you see somewhere like this? If you are autistic yourself would if be a place in which you'd like to work? For me I would just like to work somewhere where I could be me and work in the way I want to to be able to achieve positive results. Isn't that what anyone wants really?
Thank you for reading today. I will be back tomorrow for Pass the Remote but for now......
My post today is one of those thinky doodly type of posts, great description that. To be honest I didn't know what to write and I was trying to come up with some great Autism info for you all but failed miserably. I will find some inspiration but what I felt I needed to do was probably share some things that I have on my mind at the moment if that's ok.
It's nothing serious and I'm not particularly down about anything, well ok I might have the post Christmas blues a bit which sounds a bit weird as I didn't really get into Christmas all that much. I think though that it's the time where there has been a massive shift in routine and we now have to move away from the chocolate, oh sorry I mean the calm of the holidays and get back into the hustle and bustle of regular life again.
For some that is so easy, for me I find it kind of hard shifting from holidays to regular weeks, then just as I'm happy in my regular routine, we have a break and I have to restart again. So I am at that stage but also thinking what the year has install for me as a parent of a gorgeous autistic adult. He is blooming gorgeous and I love him to bits.
I have the EHCP meeting later this month, oh I know we all love that one eh? Mr T's college are really good though so this has so far been an ok experience but now we face a bit of uncertainty. I know I just need to have a good chat with the college about his future, but at the moment we don't have any plans for where he moves onto in September. That's always a big worry isn't it fellow parents? Which school? Which college? It's still just a hard when our children become adults.
I will take time, take in advice and sort it, I always do but it always seems as though we as parents nail one thing and think we can then relax before another thing pops up. This is when it's important to stress that although our youngsters don't have a visible physical disability there is a lot the people don't see or realise what goes on.
It's a bit like a massive blockbuster movie, when you see it on the big screen it looks amazing and just so real but we never think of the work that goes into producing that movie. The behind the scenes technical stuff, hair, make up, scenery, locations, it all has to come together and aim to be successful. That movie is also usually filmed in different orders so sometimes the final scene can be filmed before the opening scenes, that sends my autistic brain a bit into a mish mash I can tell you. I would have to film in the right order as a director, good job I'm not one really. My point is though that this is what our lives are like in the autistic world, there's a lot of planning for something very simple to come together and be a successful such as a deciding on a school place.
Then we have to deal with the sequels.....Autism - The Meltdown, EHCP Part 2,3,4,5,6, PIP - the Renewal and Diagnosis Another Day. It never ends, but we are all here for each other and for saying I didn't know what to write today I think I 've done alright. The thing is now I've shared my thoughts with you I feel so much better. I am now at that 'bring it on' stage. Ready for autistic parent action......just like Bruce Willis in Die Hard, although I won't fire any ammunition but I will stick to my guns.
Thank you so much for reading today, I really appreciate being able to air my thoughts. Please do pop back tomorrow for Pass the Remote Sunday but for now.......
I thought as a new year was approaching that I would share our meeting dates for the Derby Branch of the National Autistic Society. We meet at three places at present in the Derby area with both day and evening times available.
We have a Facebook page which is there to seek more information and to also get in touch if you need to know more. We do update our information regularly and some of our meetings change to accommodate a speaker. So here are our dates for 2019.......
The Farmhouse at Mackworth 60 Ashbourne Rd, Mackworth, Derby DE22 4LY
Tuesday evenings 7pm - 9pm
2nd April - AGM
Ravensdale Junior School 55 Devonshire Dr, Derby DE3 9HB
Friday mornings 9.30am - 10.30am
No April date
The Long Eaton School Thoresby Rd, Long Eaton. NG10 3NP
Thursday mornings 9.45am - 11.00am
No Feb date
No April date
We do provide a nice friendly atmosphere where you can chat with others or come a seek advice in confidence too so please do come along. My son is autistic and was diagnosed at 4 years old, he is now 18 and ever since his diagnosis I have found talking within groups very helpful and still do. My son is now going into adulthood and I feel I will always need to grab advice or just be there to help others in any way I can too.
I hope that helps a little if you are in our area. There are many branches throughout the UK too so go to the main NAS website here and find your local branch.
Thank you for reading today, please join me again tomorrow for Pass the Remote Sunday for now......
Every Saturday will be about Autism, family and life.