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......
I'm not sure I am myself really. I know the schools and colleges have finished now which can cause a little disruption again for autistic young people. My youngest really doesn't settle with the holidays, he would attend college all year round if it was up to him. He prefers the structure and the routine of his college days and feels a bit lost over the holidays.
My eldest has absorbed the Christmas TV guide already and now knows when all the Disney films are on. He will tell me every day what is on which is really handy (if it's Disney you want to watch). We have to walk every day as well in the holidays which I love because I need the exercise after eating too many chocolates. I suggested a walk tomorrow and looked at the weather forecast only to see rain. I put this to Mr T and he said ' well we have our coats Babs'. That's my nickname for those who may have missed it before.
I quite like the rest from the normal routine a little bit, I do still find it a bit unsettling and think I need to be really lazy when in fact I find that really hard to do. I also get enthused at first about having a lie in in the mornings only to wake at the same time as I usually would and then have to get up and do stuff. I have realised that I am really rubbish at sitting still. I know!! I thought I was good at it but it seems not. My mind races and I have to do the things that are going around in my brain, it's like I can't switch off. Maybe I do need my routine more than I thought.
Christmas has changed a lot really as my boys are now older and the magic has disappeared slightly. It feels a bit weird and as though I'm not really caring too much for it all this year but I think it's just a shift in the way life is at the moment and how it changes. It takes time for us to process change and I think that's my problem this year. For so many years it has been a time toys and tons of presents, but now it's money and vouchers and not too much excitement about whether Santa will be here.
I don't care, I'm still putting out my treats for Santa on Christmas Eve because that's what we've always done. I do hope your Christmas goes ok and without to much stress. Some families do have a tough time so please take it steady. The National Autistic have a list of tips to prepare for Christmas here:
I found some of those tips quite good. They did make me realise, especially the ones for autistic adults on how we need to prepare for budgeting and shopping. It is the prime time when our bank accounts tend to get the most abuse and also for me personally I cannot go shopping when it's really busy at Christmas. I find I do a lot of shopping online now and find it so much easier. People from Amazon just drop things off at the door, and usually next day......now thats great for me!!
I am going to take this opportunity to wish you all a Merry Christmas and I will be back tomorrow for a bit of telly talk with Pass the Remote Sunday but for now you all take care.
Following on from last week I thought I would just conclude the pasta saga. Well I got another message to say that Mr T would be tackling the pasta again this week. I said 'what?' but lovely cooking teacher you promised us chocolate cake this week. I was pleading for the cake as I wasn't loving the prospect of putting it to Mr T that it was pasta again especially after the last meltdown and refusal to cook.
The refusal to cook last time though meant he had to. try and finish off the pasta so we could tick it off and be done. I ventured into the unknown (Mr T's bedroom) and had a team talk, the way us parents do with our autistic kids. Nice and calm, ease into the conversation gently then any sign of meltdown withdraw immediately and not bother, then retract to living room with a brew to calm the nerves.....sound familiar?
Well team talk went well and he said he would try his best with the pasta as cool as anything so I retreated in shock, thinking this was going far too well. I went with it and sent the ingredients in with him and as sure as anything he came out of college with a nice tub of pasta salad. Yes my fellow Autistic brewsters, we have completed operation pasta and now we could move onto to chocolate cake. Yes!! (punches air), never been so pleased to see a finished pasta salad and a happy boy.
This week he got to bake a chocolate cake and he baked with gluten free flour so I could eat it (that was my idea). Mr T made the most gorgeous gluten free chocolate cake I have ever seen and tasted. I have been trying for ages to bake a decent sponge and he just comes home with this masterpiece. I couldn't stop raving about it and he started to look a bit smug. So he should, so proud of him for tackling everything again and allowing me to eat chocolate cake.
So it just goes to show that if something in our autistic minds is not going well and causing anxiety it may be that we need to shelve whatever it is and leave it for a while then come back to it. This may not always be possible for some people. I know I find things difficult to do one minute but then have to rethink a different way or just give it time and try again. We have to find that different way of processing things to ease the anxiety, allowing that precious time, how ever long it takes to allow us to cope.
A happy Mr T after all and I do have to say I did go to parents evening at his college and he is doing so well. I'm so proud of him, we celebrated by eating a little cake, just a little bit (honest).
Thank you for reading, I just thought after the anxiety we faced last week I needed to tell you that it all came right in the end. I will be back tomorrow with Pass the Remote Sunday but for now you all take care.
My son Mr T has been having a love hate thing with cheese pasta for the past few weeks. He is doing some catering at college as part of his course into independent living and getting on well with it all but we hit a road block which ended in a emergency stop this week.
The first week he attempted making cheese sauce he said that he had turned his butter into caramel while attempting a roux sauce. Nothing wrong with caramel with my pasta I thought, could be a new thing here. I love pasta and I love caramel, what you worrying about Mr T? Well he wasn't happy after that lesson, had to clean the pans - tough day that was.
Attempt two seem to go well and he came out of college with a lovely tub of cheese pasta, hurrah I thought. Why in the bad mood though Mr T, you've done it? Well he got in the car with said tub of pasta, a sandwich, crisps and a drink. Now just to explain he has lunch at college on a Monday, Tuesday and Friday and this was a Wednesday. Well they had given him a lunch by mistake at college and it sent him into a flutter. He would not speak to me or Mum and Dad from the Brew who were in the car too as we were all going out for lunch. It wasn't until we hid it all away that he could carry on with his day.
'Those silly people have given me a lunch and I don't have a lunch today from there' he said. He could just not cope at all with that but was fine when we took it away and hid it all. He then had lunch with us and everything was fine.
But then he had to make cheese pasta again and was so wound up about it he didn't tell me he needed the ingredients to take in to college until 10pm the previous evening. I struck up a deal with the tutor and he came home with another tub of pasta, all fine.
Get this though, he had to do it again the next week!! Now I had a parents evening to go to so this gave me a chance to find out why we were having to overdose on cheese pasta. Apparently he just needs to be assessed on the boiling part. Mr T had said he was bored with cheese pasta and wanted to cook something more exciting (cannot blame him, even I was bored with cheese pasta). We suggested he made a pasta salad, take away the cheese sauce and highlight the fact that when he has done this it's chocolate cake next week!! Woo hoo.
So I waited in anticipation to see what would become of Wednesday's practical.....would we get pasta again?..............(I so want to put 'to be continued' here)...................but.......................NO we didn't get any pasta and I don't think Mr T will want to cook pasta for a long time yet. He flatly refused, got in a mood and had to do something else.
I kind of admire his autism sometimes because he will just say no but I do feel for him as he tends to bottle all his feelings up and then explode. He isn't the greatest communicator unless it's a conversation about the facts about Disney, Thomas and Friends or Star Wars so we don't get far on general conversations. I do encourage him to tell me about his days at college and sometimes I get a little of what he has been doing but sometimes he'll say 'oh I don't know' when I ask and there is no pushing it any further.
I don't like to see him anxious so the pasta saga will have to be put on hold for now and return to it with lightsaber in hand ready to tackle an army of stormtroopers. I can't wait for that.. In fact Mr T would make mountains of pasta in that scenario. It's tough being autistic sometimes as processing the information required by other people and understanding why we have to keep cooking cheese pasta is difficult for some. For some people it's a case of understating that there is further assessment needed in a educational setting but for him especially, he has cooked it once why would he need to do it again? I have explained believe me but no, he's done with the old pasta.
I'll keep you posted on this one but thank you for reading, I will be back tomorrow with Pass the Remote but for now..........
You take care and don't mention the pasta!
This week we had our last two support groups of this year at the National Autistic Society Derby & District Branch. I can't actually believe we are coming to the end of another year. It was lovely to see people and have some full on discussions.
We make November our last dates as our groups are held in a couple of schools so December gets so busy for them. There are lots of events that take place that naturally parents want to attend so we always give December a rest. We will all be back in January ready for a cuppa and some chat about the Christmas holiday. It is stressful for some as routines get messed around a bit and there is quite a bit going on over the holidays at this time of year.
I do feel that the support groups are a great place to get advice, share ideas or to just generally get things off ones chest. We all have times when things either get to us a bit or we don't know what to do in a certain situation, it can be stressful and upsetting so sitting and chatting can have a massive effect, believe me.
Please don't ever struggle and think you can't talk in front of anyone about your problems, we can sort out a moment to speak to anyone individually at our groups, in private so please don't be put off. You wouldn't believe the amount of friendships that have been created through attending groups. People sometimes tend to meet up, realise they have children at the same school or have a lot in common and then go and meet regularly at other times or do activities together. You need never feel alone.
If you are struggling to find a local group then go to the NAS website and search the Autism Services Directory, you can use this link:
Here you will be able to search for services you require in any part of the country. So give it a try. It is worth it. I come away from our groups learning more and feeling quite strong, as though I can cope and I run the groups so I'm always learning from others too. The thing is I can then go and pass useful information onto other people in other groups and that's how it works.
We will be back in January as I say and if you would like more information about the Derby Branch of the NAS then go to our Facebook page here: www.facebook.com/NASDerbyBranch/
I would just like to thank everyone at our groups for coming along and take this opportunity to wish you all a Merry Christmas - see you in 2019 for more chat and of course, a brew or two.
Thank you for reading today. Join me again tomorrow for Pass the Remote but for now take care.
Every Saturday I will be talking about Autism and will review any useful information which may have been highlighted at any support groups in the week.