Mum of 4, wife of 1, our lovely biggest boy has Asperger Syndrome

#AMileForAutism

2014-05-20T01:56:00.000-07:00

On 20th July 2014 you are invited to do #AMileForAutism

You can walk, run or cycle a mile, or do it in any way you want to! Do 1 mile and donate £1 or more.

Do your mile and then text AMFA14 £1 £2 £5 or £10 to 70070 to support Ambitious about Autism, the national charity for children and young people with autism.

Post your #AMileForAutism picture to social media and nominate your friends to do the same.

Together we can raise money and awareness, and we can all be Ambitious about Autism.

My London Marathon

2014-04-15T10:15:00.000-07:00

A year ago, I entered the London Marathon ballot, didn't tell anyone, and crossed my fingers. It worked, and a minor miracle occurred - I got a place on my first attempt. Fast forward to a year later, and there I was, on the start line, waiting to go. It all felt quite surreal. When I entered the ballot the most I had ever run was about 4 or 5 miles. My training had gone well up until about 5 weeks before the big day, where during my 20 miler I had stupidly managed to slip off the pavement, injuring my foot and then my hip. The last couple of weeks I hardly ran at all, to try and prevent it getting worse, as even walking was quite painful at times. But it felt a lot better in the last few days of last week, so I was hopeful it would get me round.

I spent quite a bit of time in those couple of weeks worrying if I would manage to do it. Then a few days before I woke up one morning with the realisation that this might be the one and only time I got to do the London Marathon, so whatever it took I would finish it and I would blooming well enjoy it too.

And I had the extra incentive to keep me going, knowing that I was running as part of Team Ambitious, raising money and awareness for Ambitious about Autism. No further motivation was needed.

My hip behaved itself until about mile 8, and then started to get painful. I had to stop a couple of times around miles 14 and 16 to try and stretch it out. And from mile 20 I had to walk quite a few times. But, I loved every single second of it. My hope of finishing around the 4 and a half hour mark went out of the window, but the crowds kept me going every single step of the way. It's quite hard to put into words exactly how amazing they were. I had people cheering me on, telling me to keep going and I could do it, calling out what an amazing cause I was running for, giving me a massive cheer every time I started to run again after walking. It was the most amazing thing. Not only that, but having family, friends, and the Ambitious about Autism cheering points around the course really made a difference. I first saw my family just before mile 9, then again for a much needed hug just after mile 18. By that time it was hurting quite a lot, and I was thinking of the race in terms of "just to the next cheer point". I knew that the UKRunChat team would be at mile 19 and it was great to get a smile and cheer from them, then Ambitious about Autism were at mile 21.5 for a big cheer, a wave, and a huge smile. I was spurred on to mile 23 knowing that Ambitious about Autism had a samba band there. They were amazing, not to mention the supporter who spotted me coming, and ran over so that she could give me a much needed high five as I went through. I ran the whole of the last mile with one of the Runner's World Pacers. I had been near him for most of the second half so thanked him for keeping me going. We agreed that we would run the rest of the way, and it was possibly the best mile of them all. As we came up to Buckingham Palace he was whipping the crowd up to cheer extra loudly, telling me "they're cheering for you" and we crossed the line together with hands aloft, celebrating. It was something I shall never forget.

It was an absolute joy to run for Ambitious about Autism, and my fundraising total currently stands at just over £1700, more than I could have hoped for. I am particularly touched by the generosity of people who I have never even met, it's been incredible, and thank you to every single person who donated.

Being part of Team Ambitious has also meant that I got to meet the lovely Kate. Turns out we live near each, both started running for similar reasons, and have got quite a bit in common for one reason or another. Also turns out I love running with her. And turns out she's ace. So we met up with each other at the start, soaked up the atmosphere together, had a lot of fun, and ran the first 12 miles together before my hip decided I had to slow down. I couldn't think of anyone I would rather have done all that with, and I'm hoping we might get to do it all again another time too.

It's not too late to sponsor if you would like to, donations can be made to my Virgin Money giving page here: http://uk.virginmoneygiving.com/SusanSpence2014 or you can text SSLM77 £1 to 70070 to sponsor me £1.

So, (and here's something I would never have thought possible a year ago) job done - I'm a marathon runner!

My brilliant biggest boy

2014-02-25T14:07:00.000-08:00

It's a miracle. My second blog post within a week. A year or so ago I was writing something new at least 2 or 3 times a week. If I'm being honest, there was lots to write about. And lately there hasn't been, which is a good thing because it means everything has been going smoothly, according to plan.

But it occurred to me that an update on my biggest boy was probably a little overdue. It occurred to me on the walk home from school this afternoon. On a walk home where he made me laugh most of the way home. Where he didn't actually walk but danced home for at least half of the way. Where he was telling me jokes that he knew would make me laugh. Where he asked if he could make me a cup of tea when we got home.

The short version is, he's doing BRILLIANTLY. Not only is he coping with school, but he's enjoying it. In fact, I would go so far as to say he positively bounced in to school yesterday morning, on the first day back after half term. And I'll admit that at one point I never could have believed that would be possible. Not only that, but he has been off the anti-psychotic medication for over 2 months, medication he was on for over a year and a half, and a fairly hefty dose of it at that.

What a dude.

I can't quite explain how proud I am of him. But wanted to share it, so that everyone who has been with us from the start could see how brilliant he is, how hard he has worked, how far he has come. And to give hope to anyone who may be at the start, who may be where we were a year or so ago.

My brilliant biggest boy.

50 days

2014-02-22T13:08:00.001-08:00

50 days. In 50 days time I will be running the London Marathon. Now there's a sentence my old PE teachers would never have believed. I'm 36 years old, and up until almost exactly a year ago, school PE lessons was the last kind of exercise I had (begrudgingly) taken part in.

Then I heard about Couch to 5K. I still wasn't remotely a fan of sport, but I am fairly stubborn and I do like a challenge. So I thought I would give it a go. Mainly for the 'no one would think I could do it, so I'm going to do it' reason. And much to my surprise I didn't find it completely hideous, and actually quite enjoyed it. Me! Enjoying running! I didn't really tell anyone I was doing it, and ran in a park which was set back from the road to minimise my chances of being seen by anyone I knew. Then, as I was starting to run for longer and longer, I got a bit bored of running round the same circuit, got brave, and actually ran on actual pavements, where people I actually knew might be able to see me.

And I kept running further and further. And I kept loving it. I entered myself for a 10K, which I enjoyed. And then, I found myself in the lucky position of running my first half marathon, the Great North Run, as Jo Whiley's running buddy. I can't quite explain how much fun that was, and how much I loved it.

A couple of weeks after that, I found out that I had got a ballot place in the 2014 London Marathon. I hadn't actually told anyone I'd even entered the ballot, not even my husband. I had heard about the people who have entered for years and years in a row and never got a place. And I got one on my first year of entering! I'm a big believer in things happening for a reason, and took this as a sign that someone somewhere thought I should keep running.

I also have an extra motivation to keep running, and that is raising money for Ambitious about Autism. They are the national charity for children and young people with autism, and the work they do is amazing. Their mission is to help children and young people with autism to learn, thrive and achieve. I ran the Great North Run for them, and knew as soon as I got my marathon place that I would run again for them too. As part of Team Ambitious I was lucky enough to visit Tree House School a couple of weeks ago, and see some of the ways they put this mission in to action. I left feeling inspired and even more dedicated to raising as much money as possible for this amazing charity. As a parent of a child on the autistic spectrum I am inspired by their positivity and outlook. I am thankful that they exist to help and support not only children with ASD, but also their families.

So, this time last year the longest I could run for was 3 minutes. Yesterday I ran for over 3 hours, and ran 18 miles. In 50 days I shall run the London Marathon. All 26.2 miles of it. I shall run it proudly as part of Team Ambitious, wearing my Ambitious about Autism vest, and knowing that I am raising as much money as I possibly can for the most amazing cause.

If you are able to sponsor me a £ or 2 you can do so here:

http://uk.virginmoneygiving.com/SusanSpence2014

You can also sponsor me by text, by texting SSLM77 followed by either £1, £2, £3, £4, £5 or £10 to 70070. So to sponsor me £2 you can text SSLM77 £2 to 70070.

Thank you.

STAARS Project - major new research into early detection of Autism and ADHD

2014-01-28T09:54:00.000-08:00

Last week I was invited to Birkbeck, University of London, for the launch of the STAARS project - Studying Autism and ADHD Risk in Siblings. The aim of this project is to learn more about the early development of baby brothers and sisters of children with either autism or ADHD, in the hope that the study will provide long-term help to improve early detection and diagnosis of children with autism and ADHD.

It was a fascinating morning. We began by hearing about the work that the Babylab does, and the research that has already been done into early detection of autism. We were told that 40% of children with ASD also meet criteria for ADHD. Those working on the STAARS project feel it is important to understand what early risk factors might be specific to ASD or ADHD, and which risk factors might be common to both conditions. Children with an older sibling with one of these two conditions have a significantly higher possibility of also developing either ASD or ADHD, and so it is these younger siblings on which the new research will focus. As a parent of a child with ASD, I fully understand how earlier detection and diagnosis would be a welcome and positive step, leading to earlier support and earlier access to relevant services. It was also explained that approaches to treatment of the two conditions have, up until now, had separate traditions, but this might be about to change. Understanding early infant neurodevelopment may also identify new types of interventions. Early results of the research are expected in 2017/2018.

We were then taken on a tour of the Babylab itself, which was fascinating. It was a relaxing environment, and it was obvious that participating in the research is a fun experience for both the children involved and their parents. A parent whose child had been involved in an earlier phase of research was also present during the morning, and confirmed that this was very much the case, that it was great fun, and actually a lovely way of spending time with your baby. We were shown research methods such as the eye tracker, the EEG sensor net, and the Near Infrared Spectroscopy hat. This NIRS hat it was explained, was helping to fill a research gap that currently exists because of the practical problems of young children undergoing an MRI scan. It was explained that babies up until the age of about one could undergo an MRI scan when they were asleep, and children from about six years of age upwards were old enough to have the process of an MRI explained to them before undergoing it. However the gap exists in between these two ages, and the NIS hat is helping provide research to fill that gap. Research techniques include monitoring whether babies respond more to social cues (e.g. an image of someone smiling) or non social cues (e.g. a tractor), monitoring how the brain responds to socially interesting videos and sounds, play based assessments, questionnaires, and DNA samples to name a few.

So, in order to carry out this ground breaking research, infant scientists are needed! The STAARS project is looking for families who are expecting a baby or have a baby up to the age of ten months old, who also have an older sibling who has already been diagnosed with either an Autism Spectrum Disorder or ADHD. 200 families are needed, 100 with a sibling with autism and 100 with a sibling with ADHD. Following my morning at the Babylab, I know that I would absolutely get involved if I had a child young enough to take part. If you meet the criteria, and would like to know more you can visit the STAARS website here or you can email staars@bbk.ac.uk

Knowing how hard our own personal battle was to get an autism diagnosis for my son, any research that may make this process a little easier in the future can only be a positive step. I know that an earlier diagnosis for my son would have meant earlier access to relevant support and services, and a much less traumatic time for not only my son but also our whole family. If you can, I would urge you to find out more, and get involved.

2014 - A year of running for Ambitious about Autism

2013-12-31T03:55:00.001-08:00

In 2012, my eldest son was diagnosed with Asperger Syndrome. It was a challenging time for all our family, and I began running as a way of having a little time to myself, and as a way to relieve some of the stress.

In 2013 I have gone from being someone who couldn't run up the road, to completing my first half marathon - the Great North Run 2013.

2014 is the year that I run my first Marathon! I am very excited to have a place to run the London Marathon on 13th April. I'm also running the Silverstone Half Marathon, the Bupa London 10K, and the Great North Run. There may also be a couple more events to add to that list! I'm doing it all to raise as much money as possible for Ambitious about Autism, the national charity for children and young people with autism. If you are able to sponsor me you can do so here:

http://uk.virginmoneygiving.com/SusanSpence2014

You can also sponsor by texting SSLM77 plus the amount you wish to sponsor me (£1, £2, £3, £4, £5 or £10) to 70070. For example, text SSLM77 £2 to 70070 to sponsor me £2.

Thank you so much for your support and your kind donations. It means so much, and is that extra incentive to keep training and keep running.

3 wishes came true

2013-12-21T10:53:00.000-08:00

I haven't blogged in a really long time, but I just remembered this post that I wrote almost exactly year ago, in which I made 3 wishes for 2013. I read it again, and thought that an update was well overdue.

I first started writing this blog fairly soon after J's diagnosis. It was a really tough time for all of us, and blogging it out was a way of helping to make sense of it all. For about a year after the diagnosis came J was only able to cope with an hour of school per day, and on a one to one basis. The classroom was a noisy, scary place and his anxiety was so high it was too much for him to cope with. We had incredible support during this time from CAMHS, Autism Outreach, and Hospital and Outreach, without all of whom a return to school would never have been possible. There were many times when we just couldn't see how he would ever be able to be able to be back with his class again. But slowly, and surely, he was able to do it. Probably the best phone call I have ever had came from school. My heart sank a little when I saw the number come up on my phone, only to answer it and be told "J says he would like to stay in school all day today, and wants to know if you can bring his lunch down please." And he was back.

Every school event this term has reminded me how far he was come in the last twelve months. At the Harvest Festival last year he went along with his Dad, but was unable to control his anxiety and they had to leave after ten minutes. This year he not only took part along with the rest of his class, but climbed up the steps to the pulpit, and did a reading in front of the whole school and all of the parents. Last year he sat with me for the Christingle Service, and struggled throughout. This year he stood in the middle of the church, proudly holding his Christingle along with the rest of his class. Not to mention this years' Nativity where he stood on stage with everyone, belting out all the songs with a huge smile on his face, and gave me a thumbs up at the end. My eyes may or may not have been leaking a bit at this point.

And another milestone, today is the first day in over a year and a half that he hasn't taken any anti-psychotic medication. Obviously that is early days, but he's been on just a minimal dose for the last three months, so (on the advice of his psychiatrist) we're trying to be free of it over the holidays and seeing how we go. And how wonderful that will be.

Next year presents new challenges for J, the main one being the transition to secondary school ,which is of course a huge change. But the school we've chosen seems perfect for him, the support available for him is really impressive, and he seems genuinely quite excited about it, so it's a good place to be starting from.

As for me, this year has been incredible. I discovered running, much to my surprise and the surprise of those who know me - and I love it. Not only that but I got the opportunity to do the Great North Run with lovely Jo Whiley. We were running buddies in the build up to the race, training together and encouraging each other, and it was the most brilliant experience, and I loved every minute. It also gave me the opportunity to raise money for Ambitious about Autism, a charity that is so close to my heart. And in a moment of possible madness I entered the ballot for the 2014 London Marathon....and got a place! I'll be running for Ambitious about Autism again of course. I'm nervous, but excited and absolutely determined to do it.

To return to my 3 wishes, it's safe to say that they all came true, and without any stress or worry. 2014 is shaping up to be pretty good too.

The next chapter

2013-10-11T13:17:00.001-07:00

I really haven't blogged very much at all in the last few months, running-related blogs being the exception. I suppose running has taken over quite a bit, butt that's not a bad thing at all. Running has become a passion and a way of life now, something I never thought I would hear myself say! Not only is it something for me, something that I love, but by running the Great North Run I have now raised (including Gift Aid) just over £1000 for Ambitious about Autism. And I shall add to that - I have a number of challenges in the year ahead, not least that I shall be running the London Marathon in April 2014!
This is what next year will entail:
http://uk.virginmoneygiving.com/SusanSpence2014
and I am doing it all for Ambitious about Autism.

But, to go back to the lack of blogging recently, I suppose there's quite a lot to catch up on. First of all, is how completely brilliantly J has been doing. Back to school last month was just incredible. I braced myself for the return of the anxiety in the last part of the summer holidays, but it never happened. The first day of term I walked him in to school and he had a huge smile on his face. No worries, no tears. And considering that this time last year he was only able to cope with an hour a day at school on a one to one basis, this is no mean feat to say the very least! I'm so hugely proud of him.

We are also looking at the next step, and that is secondary school. At first I was full of dread in having to deal with this transition. For someone who thrives on routine and familiarity, the change from a small primary school to a big, busy, noisy secondary school will be far from easy for J. But I'm starting to see that there may be a lot of positives. I think that secondary school will mean that he will be able to meet more like minded people. There will definitely be others who have ASD at secondary school, whereas so far J hasn't met anyone else on the spectrum. There will be more that he is interested in - science club, cookery club, computer club. We had already picked out the secondary school that we thought would be the best to meet his needs, and this week was their open evening. J absolutely loved it. He was quite quiet to start with, but as soon as we got to the science labs he was joining in with the experiments, and having a brilliant time. It made me so happy to see. He was able to cope with the new surroundings, the noise, the business of it all, the unfamiliar people. There will be a long transition process to make sure he is as familiar as possible with his new school by the time next September rolls around, but the fact that he seems genuinely excited about going there is a huge step. I think the next chapter will be an exciting one, and one that may be the best possible thing that could happen for J.

As a comparison to this time last year, the school harvest festival was a couple of weeks ago. Last year J went but found it too hard and had to leave after about 10 minutes. This year he casually mentioned a couple of days before that he had been asked to do a reading. So in front of the whole school, and all of the parents, that's exactly what he did. He walked up the steps to the font, did his reading, and gave me a huge smile and a thumbs up afterwards. What a star.

And if that wasn't enough good news, I am the very proud owner of a brand new baby nephew. His name is Harry and, as you can see, he is one handsome little dude.

The Bupa Great North Run - we did it!

2013-09-19T10:53:00.003-07:00

A week before the Great North Run, my race pack and number arrived...and had the effect of making me panic! In that week I lurched between excitement and feeling really quite scared. I was following the plan that Simon, the Bupa physio, had advised, so was tapering my training. My usual outlet for releasing stress would be to go for a run, but I couldn't do that!

On Saturday I made the journey up to Newcastle, meeting my sister when I got there, who came to cheer me on. We went for a wander along the river and saw the Tyne Bridge looking like this, which made it seem all the more real.

I saw Jo, and it was good to talk to someone who knew how anxious I was starting to feel! Dinner was carb-heavy, and I kept to advice to avoid alcohol and caffeine. I had a fairly early night and slept better than I thought I might.

After an early breakfast we set off to the start line. Considering our training session the week before had been in glorious sunshine, the weather forecast for the race was pretty awful, mostly consisting of torrential rain and gale force winds. It turned out to be a lot better than predicted, and the rain stayed away the whole time we were at the start, although it was cold and windy, and keeping warm was a priority.

Jo was interviewed on the BBC programme alongside Mel C, and I was really pleased to find out afterwards that they had played a film made at our last training session where I was explaining why I had got in to running in the first place, and why I had chosen to run for Ambitious about Autism.

Before we knew it, it was time for the race to start. We were starting right at the front, not too far away from a certain Mo Farah. Simon had warned us that the start would be really busy, with people jostling for position and trying to push past. There was a lot of that but we all managed to stick together.

Jo was a little speedier than me, so we ran the first three or four miles together, and then I dropped back a little bit. The promised rain came, but not for too long, and there was a tailwind so it helped to push us along. The crowd along the way were everything that I had been told, and more. The atmosphere was incredible and such a help in keeping going. My personal favourite was Elvis in a bus stop - made me smile just when I was starting to feel really tired. I ran faster than I had in training and was over the moon to finish in 2 hours 13 minutes and 2 seconds, just 8 minutes after Jo. Crossing the finish line was such a brilliant feeling, quite emotional and a huge sense of achievement.

My total raised far for Ambitious about Autism was just incredible. I had hoped to raise £500, and ending up raising (including gift aid) just over £1000. A huge thank you to everyone who sponsored me, it really means such a lot.

This has been such an incredible experience. I've absolutely loved every minute of being Jo's running buddy. It's been brilliant to go through the whole experience with someone else every step of the way, to support and encourage me, and help me keep going. I'm also so grateful for all the brilliant expert advice I've received from everyone at Bupa, it has been invaluable. Running with a buddy is definitely much more fun, and I've absolutely got the bug now. Newcastle - I'll see you again, for the Great North Run 2014!

Countdown to the Great North Run

2013-09-05T02:52:00.001-07:00

On Monday I made my way back to London for my second training session with the lovely Jo Whiley, our last session together before the Great North Run next Sunday.

I've been pleased with how my training has been going since we last met up. On the advice of Simon, the Bupa physio, I've been increasing the distance of my long run (which I usually do on a Sunday) by a mile each week. And the weekend before last I ran the full 13.1 miles. It was hard work, and I did it in 2 hours 26 minutes, but I did it! I don't think I've ever been so tired in my life afterwards, and at any given point in the week afterwards I could have happily fallen asleep. I wasn't really ready for that, having felt OK after the 11 and 12 mile runs I did. So I'm prepared to take it easy in the week after the Great North Run now, and expect to feel quite tired!

Before the training started we had a couple more interviews, and more photos taken:

Then we had a really useful session with Bianca, a nutritionist from Bupa. She gave lots of advice about what we should be eating in general whilst training, but also what to eat the night before and the morning before the race. I've recently stopped eating meat so I was also able to get advice from her on what I should be making sure I'm eating instead (top tips were low fat cheese and unsalted almonds).

After that we went back outside with Simon for some warm up stretches, and then we were off around Regents Park for a run in beautiful sunshine.

Whilst we were running Simon talked to us about what to expect on the morning of the race, what to expect at the start line, and the best way find space to run in the crowds once the race has begun. It was a really hot day, but the run went well, and we finished off with a warm down and more stretching. I think we're both definitely feeling nervous, but also excited about the run. I feel a bit more apprehensive now, knowing what hard work the 13.1 miles was and how tired I was and how much I ached afterwards! But I'm confident that we'll do it! It's great to have the support from Jo, and to be able to support her in return, as well as all the brilliant advice that I've had from everyone at Bupa. My extra motivation comes in knowing that I'm raising money while I run for Ambitious about Autism, the national charity for children and young people with autism. I was thrilled this morning to see that I have reached my fundraising target, but I'd like to raise as much as I possibly can for this amazing charity that is very close to my heart. If you haven't sponsored me yet and would like to you can do so via my just giving page which is here: www.justgiving.com/Susan-Spence1
Alternatively you can sponsor me £1 by texting SSAA77 £1 to 70070
or you can sponsor me £5 by texting SSAA77 £5 to 70070.

A huge thank you to everyone who has already sponsored me. You are supporting a brilliant cause and helping me to keep one foot in front of the other! The Bupa Great North Run is next Sunday, the 15th of September - I'll let you know how we get on!

Autism can take a back seat..and stay there.

2013-08-14T04:29:00.002-07:00

It really feels as though autism has taken a back seat for now. And it feels great. And it can stay there.

J has coped just brilliantly this holidays. I was away in London all last week, with my daughter who was doing her dancing summer school. Not only did he cope, he had a great week, and although he said he missed me he really seemed to enjoy the time with his dad and brothers. Considering that this time last year he couldn't cope with me going out for an hour in the evening, it really is massive progress. He is also sleeping in his own room all night again, after over a year of being too anxious to sleep on his own, it's another huge step for him.

We are also in the process, as advised by the psychiatrist, of reducing his medication so at the moment he's on half the dose that he was a month ago.

He's happy, he's laughing, he's having fun. Today he's gone to out to a local theme park with Dad, his sister and one of his brothers. He wanted to go and was excited about it, and that's a different J from just a few months ago.

So autism is taking a back seat, and life seems to be getting back to normal fairly rapidly. Of course there will be back to school to contend with fairly soon, but we're preparing for that already and we're ready for whatever it throws at us. I don't want ASD to be the first thing that people think about when they think about J. I want them to think of a boy who loves Power Rangers, who is brilliant at Lego, who is kind and loving, who loves science and computers. The ASD will always be there, but I'm not going to let it take the driving seat.

Running the Great North Run as Jo Whiley's running buddy

2013-08-02T10:33:00.000-07:00

I've blogged before about how I've fairly recently started running. I started doing it as something just for me, where I can get out, headphones on, forget about things, and run. I've surprised myself with how much I enjoy it, with how much of a buzz it gives me, and how actually I'm not nearly as bad at it as I thought I probably would be! A few weeks ago I did a local 10k race, and that made me think about whether I could stretch myself to do a half marathon, something I would never have even considered a few months ago. At about the same time I saw that Bupa Running were running a competition on their Facebook page, where you could train with the brilliant Jo Whiley as her running buddy, and then start the Great North Run together. This seemed like an amazing opportunity and so I entered.

I explained on my application that, like Jo, I had 4 children and so knew how hard it was sometimes to find both the motivation and the time to get out for a training run. Also in common with Jo this would be my first half marathon. I also mentioned that I have a stubborn streak which enjoys the challenge of pushing myself that bit further, which should make me a good person to be a running buddy, and should stand us in good stead for getting to that finish line. I also explained that I would run to raise money for Ambitious about Autism, a charity that is obviously very close to my heart. Much to my surprise, Jo and Bupa picked me!

So this week I had a brilliant day in London to meet Jo and have our first training session together. It wasn't what you would call a typical day for me! There was a photographer taking lots of photos of the session, as well as a film crew filming and interviewing us. The Bupa physio was on hand to give really useful advice, amongst other things on the best way to warm up and down before and after a run, and on our running style. He filmed us running so that he could explain which parts of our running style were good and where we needed to do some work. Apparently Jo and I both run like gazelles - up until then I was fairly sure that I ran in a style similar to Phoebe in 'Friends' so I'm holding on to the gazelle comparison! A brilliant part of being Jo's buddy is that I have the support of the Bupa team during my training, so I can have access to this type of expert advice. As a completely novice runner this is invaluable.

The buddy system means that we can encourage and support each other, for me it's an extra incentive to keep training and pushing myself, being part of a team means you don't want to let anyone down. I've been a big fan of Jo's for a long time and it was so lovely to meet her, to talk to her about why I started running, and why I want to raise money for Ambitious about Autism.

The physio gave me confidence that I'm on target in terms of my training, and now I know what I need to be doing between now and the race on the 15th September. We have another training session later this month so I shall report back. There will also be updates on the Bupa Facebook page.

In the meantime, if anyone is able to spare a pound or two to sponsor me I would be incredibly grateful. This can be done via my JustGiving page here.

Alternatively you can text SSAA77 £1 to 70070 to sponsor me £1, or text SSAA77 £5 to 70070 to sponsor me £5.

Thank you! I shall keep you updated, and in the meantime leave you with some photos from this week's training session.

To answer the question "I don't know how you do it"

2013-07-23T09:42:00.003-07:00

Today I re-read 'Welcome to Holland', a brilliant poem by Emily Perl Kingsley that explains perfectly how it feels to raise a child with a disability. If you're not familiar with it you can read it here

I haven't read it for about a year and it made me quite emotional again. I think the part that gets me most, is that it's ok to say "This wasn't what I wanted".

I'm always quite surprised by the amount of people who have said to me over the past year "I don't know how you do it". As if it's a choice? I usually just smile politely but part of me is tempted to explain that when the diagnosis letter arrived, it didn't come with a tear-off slip giving me options of choosing between just getting on with it, or asking for a refund, or an option of swapping my child for a neuro typical one. You do it because you have to. You're a parent and that's your job.

It's like if your child catches chickenpox - you don't say "Well I'm sorry, I can't cope with this" and hand them over to someone else to look after until the spots have gone away. You stock up on piriton and camomile lotion, and brace yourself for even less sleep than normal. Life deals us a hand of shit from time to time but you have to suck it up and get on with it. If for no other reason than no one else is going to do it.

But this poem makes me feel that it's ok to not always be happy about it, it's ok to be a bit jealous of the people who always get to take their holidays in Italy, and it's ok to sometimes wonder what life would have been like if you had got to go Italy. That you don't have to justify feeling a bit sad that you'll never get to go there after all.

Being pushed from pillar to post

2013-05-31T10:17:00.003-07:00

So, apparently getting an ABC assessment done for J, to finally determine whether or not he has dyspraxia, is actually the hardest thing in the whole entire world.

No, really.

The Consultant Psychiatrist asked for it to be done over 18 months ago now, and it seems to have turned in to some sort of farce. Fast forward another 14 months or so and it still hadn't been done. So the Community Paediatrician who did J's statutory assessment repeated that it needed to be done, asked me to ask school to do it, and to tell them that they should refer the results straight on to Occupational Therapy. The reason for this was that if they sent the results to the Paediatrician he would just get put to the bottom of the pile, and be referred on to OT when he got to the top.

So an ABC was done, but school can't score it (i.e. know whether or not it confirmed that J had Dyspraxia) and there weren't any Occupational Therapists any more for them to be able to refer him to anyore. So I phoned the Paediatrician's secretary to find out who this mythical OT was. She said she would get him to phone me back. He never did.

Fast forward a couple more months to when I had the appointment with the OT at CAMHS, to discuss J's sensory profile. But this OT, it had previously been made clear to me, wasn't a usual OT. They were one specialising in mental health. So not able to help with the Dyspraxia issues. This OT was brilliant though, and emphasised that it was important to get the ABC done, so that the relevant support could be started as soon as possible if J does indeed have Dyspraxia. They also told me that it was possible to self refer to the Children's treatment unit at our local hospital (which includes OT's and physio - Paediatrician also thought that J may be hypermobile).

So, I self referred. Yesterday I had a phone call saying that, actually I can't refer for physio, could I get a letter from the GP? That will be the same GP that has had naff all to do with him other than telling him to pull himself together 2 days before we ended up in A&E and under the care of the CAMHS crisis team.

And today I had a letter from the OT department of the Children's treatment unit saying that they had been in touch with CAMHS, and seeing as he had had contact with an OT from there, we wouldn't be getting anymore OT contact from them.

So back to being pushed from pillar to post. Yet again it will have to be me that gets on the phone on Monday morning and has to sort it out. Because no one else can be bothered, but I have to be.

All I want is for someone to do an ABC assessment and give us an answer. IS IT REALLY TOO MUCH TO ASK??

Being me

2013-05-25T13:08:00.000-07:00

My blog posts have been fairly few and far between lately. I've been lacking in inspiration quite a bit. To be honest I'm finding the 'autism parent' tag quite hard at the moment. I'm struggling with the fact that this is all that I am. That for a lot of the time that this is all that life is about. I need to be Susan again for a while, rather than just a mum of someone with autism.

I have made some changes. I have begun my A Level Government and Politics course. I'm continuing to run, to enjoy running, and to push myself further with it. I have also changed my twitter name, so that I'm Susan on there, not just a mum or a wife or an autism parent. I have pondered changing the blog title, but not sure what else it could be.

It's hard to explain. Things are certainly better than they have been in the whole of the last year. Maybe now that I have a little space to breathe, the impact of that last year has come and walloped me in the face. I still struggle with the unnecessary and exhausting process that being an autism parent involves. Of being the go-between, of organising things that someone else should have done, of constantly chasing up other things that yet another person should have done, of other people making life harder than it actually needs to be.

I'm not really sure of the answer at the moment. I will continue to blog when I think I have something worth saying. But in the meantime I feel as though I'm looking for something, I just haven't quite worked out what it is yet. I'm not quite sure who I am anymore and I don't know where the answer to that may be. I guess I need to keep on looking.

The grief that diagnosis can bring

2013-05-08T13:48:00.000-07:00

I have thought about writing this post for a while. But wanted to make sure that I wrote it exactly right.

I wrote briefly, about 9 months ago , on my feelings about J's diagnosis. For those readers who may be new to the blog his diagnosis is Asperger Syndrome, an acute anxiety disorder, he has complex sensory issues, and is also likely to have Dyspraxia too.

His diagnosis came a year ago, and only after we had reached a crisis point. That crisis point meant that for most of the last year J was only able to cope with an hour a day of school, and also that he needed medication. He remains on anti-psychotic medication to control his anxiety and also melatonin to help him fall asleep.

When the diagnosis first came, it felt like a victory. Not because I wanted him to be on the autistic spectrum, not because I wanted him to have any of these difficulties, but because it was the result of a long two year battle. A battle of trying to get people to realise that because he was displaying symptoms at home but not at school we weren't just neurotic parents. A battle of ignoring people whose opinion was that, because he was well behaved and not disruptive, he couldn't possibly be on the autistic spectrum. A battle against people who thought that, despite no medical training, thought they knew better.

A diagnosis suddenly triggers an awful lot of support and advice. This was the biggest thing for me - that we could finally get specific and relevant advice. That we were doing exactly what J needed, rather than guessing at the best way to help him. I have always been, and remain incredibly grateful for, this support. I can't praise highly enough both CAMHS and Autism Outreach for all that they have done and continue to do for our family. We waited so long for the diagnosis, getting to a point that was so horrible for all of us, and to which we hope we will never get again, that the overwhelming relief and support it brought us is hard to explain.

Then, a few weeks after the diagnosis, I was invited on to a course (run by CAMHS) for parents of newly diagnosed children on the autistic spectrum. I found this course a little difficult. While I was feeling euphoric about finally having a diagnosis and being grateful for any advice and support given, the other parents were mostly negative, dwelling on the difficult situations that they were in, particularly with their children's school.

But here we were told that it was very usual, after a diagnosis, to feel a sense of grief. A sense of loss for the child you were expecting, for the child that you had made plans for the future for. I didn't get this at the time, I was too focused on getting J the specific support and help we had been so desperate for, for so long.

But I think this grief hit me later, and stays with me now to some point. I don't want to trivialise grief in any way. I am grateful for my lovely biggest boy, and all that he teaches us, every single day. But the sense of loss hits at different times. The loss of the life we all expected to have, the plans that we made, the things we thought we might do.

It hit today, going to look at a possible secondary school for J. The school was brilliant, and the senco even more brilliant. Then it hits at how early we have to start this process, how difficult this transition will be for J, for the whole family. It hits as I write the referral form for him to (finally) be assessed for Dyspraxia, for him to get the Occupational Therapy and Physiotherapy that he needs. It hits every morning that his 9 year old sister and 4 year old brother run happily into school, while I need to take him in to his class teacher to explain all that he is feeling anxious about that day. That (some days) he has to be peeled off me, crying. It hits when something like a family day out is too much for him to cope with.

I think it will get easier. That as J gets older and is taught ways to cope, then so will we as a family. But in the meantime I shall maybe remember that it's ok to feel a little bit sad sometimes. That this is normal. And to feel positive for the future, and all that it may bring.

Three wishes are coming true

2013-05-03T10:28:00.002-07:00

There are lots of good things happening at the moment, and lots of things to look forward to. I was reminded earlier today of this post I wrote at the start of the year, about my three wishes for the twelve months ahead.

J has now done two full weeks of full time school. Today when I went to pick him up, he casually told me that he had gone to assembly this morning (he usually stays in his classroom and reads a book), and when his teacher had asked who would like to read out a prayer, he volunteered and read it out. Not only in front of the whole school, but also in front of a number of parents who were there! So wish 1 seems to be complete.

Today was also our first visit to look round a secondary school. It feels a little daunting, and we're pretty sure that the school we saw today isn't the right place for J, but having a statement means we can start the process sooner than we could otherwise, be more prepared, and have help and support in choosing the best school for him. Once again we were accompanied by our brilliant Parent Partnership supporter, who gave us great advice.

And as for things to look forward to, there are lots. Compared to this time last year when, in all honesty, getting through the day was hard enough for all of us. I've started running, which I love. I love the feeling I get, I love the challenge and achievement of it, I love pushing myself that bit further. As one of my good friends said "I was trying to think if I knew of anyone less likely to go running than you....and I just couldn't"! I didn't take offence because this is so true. So maybe the part I love most of all is proving people wrong. My husband would probably agree that I can be quite stubborn when I want to be! I'm also looking forward to getting stuck in to studying again, and will start that in the next couple of months.

I have booked for my daughter to go to ballet summer school in August, and she and I will stay with my sister for a week, and we have lots of fun planned. J knows all about it, and is prepared for it, and actually seems looking forward to a 'boys week' while we are away. Wish 2 is on track for completion.

The week after next my husband and I are going out for dinner, and then to see Sean Lock do stand up. It's the first night out we've had together for getting on for two years I think. Not only that but we have tickets to see one of our favourite bands in October, and another night planned for November to see Mickey Flanaghan.

So it's safe to say that wish 3 will be achieved too. Seeing as we're not quite halfway through the year, I reckon that's pretty good. I am proud of J. I am proud of all of my children for the way they have dealt with everything that the last year or so has thrown at them. And I'm looking forward to the next few months and all that they will bring.

Starting the search for Secondary school

2013-04-26T10:41:00.000-07:00

Since J is in Year 5, and since we are now in the position where he has a statement, we need to start thinking about Secondary school already. It feels like a bit of a minefield, to say the least. As J is our eldest child we haven't even gone through the process in 'normal' circumstances, let alone with a child with special educational needs.

At this point I want to talk briefly about the National Parent Partnership Service. Because they are INCREDIBLE, and I am so grateful for the support we have received from them. Our Parent Supporter is beyond amazing, and without whom we wouldn't have got to the stage of being in receipt of J's statement at this stage. Our Parent Supporter attends every meeting at school with us. Our Parent Supporter supported us in submitting a Parental Request for a Statutory Assessment, and is there at every single step of the way, whenever we need them. I feel so much more confident knowing they are by my side, making sure that our voice is heard, and that we get our point across. I wanted to mention them, in case anyone reading this post can benefit from the service they offer, and was not already aware of them. Their website is here and you will be able to find your local service. They are also on twitter @NPPN_tweets.

Another way in which NPPS have helped us was in running a seminar on the process for applying for secondary schools if you have a children with a statement. Before I attended this I had no idea that the process was different. Instead of the usual procedure of giving a list of three schools in order of preference, the Local Authority will write to parents of statemented children in October to ask which one school we want our child to go to. We will then have fifteen working days to reply. Hence the reason why we need to start the decision making now.

And so we are starting to visit schools, and work out where will be best for J. Our Parent Supporter is helping hugely with this process, making appointments with SENCO's of local schools, and coming with us when we visit. We will take J's statement with us, and ask how each school will provide what his statement requires.

It does feel very daunting, and I have no idea what sort of setting will be the most appropriate for J. I've been told that I'll get a 'feel' for the right place when we're there. I don't know yet if it will be in a mainstream setting, or perhaps somewhere that has an autism unit or autism base. The distance of the school is also something that needs to be considered. I don't think he would cope with a bus journey, it would be too noisy and stressful, and I don't think he will be independent enough by that stage. There are also there logistics of possibly getting him to school in a different town from my other three children. Or he may possibly qualify for transport. We have agreed though, that when we find the right place for him, we'll find a way of getting him there, whatever it takes.

So that is what the next couple of months are all about. It will be such an important decision in terms of his future, as it is for any child of course. But I'm confident we have the support that will help us make the right choice.

And to finish on a positive, J has done his first full week in school since March last year - what an absolute star!

What a week

2013-04-19T11:34:00.001-07:00

This will only be a fairly short post, but I really wanted to share what's happened over the last few days with everyone who has been so supportive over the last few months.

Back to school on Monday was the calmest that I can remember in recent years. J seemed excited about going back, and chose to stay for a little bit longer than we had planned, so did nearly 3 hours (in his Year 5 classroom) on the first day back. He did the same on Tuesday too.

On Wednesday we moved on, so that he went in to school at the same time of the morning as everyone else, for the first time in over a year. I took him in to his classroom rather than him going on his own. We took his sister and brother in first, then I asked him if he was ready. He looked me in the eye and said, "I was born ready." And in he went.

The same happened on Thursday, but then I got a phone call at 10:45. My heart felt it briefly stopped, only for the reason for the call to be "J says he would like to stay all day, so please can you bring his packed lunch down to school?" !!!!

So yesterday was his first full day in school for over a year, and today....he did it again. To say I'm proud of him doesn't scratch the surface really. Just a few short weeks ago we thought he may never be able to get back into the classroom, and look how far he has come. I think that he feels in control, that he knows he isn't going to be forced in to any situation that is too difficult for him. His teacher said today that it was all getting a bit noisy in the classroom which he was finding difficult, so he took himself off to the office to sit for a bit of quiet time. I'm so proud that he could recognise that the situation was getting tricky, remove himself from it, and find a way to cope.

Whatever happens next week, and I'm reminded often to be prepared for downs as well as ups, this week has been incredible. My biggest boy knows how proud we are of him, and is very rightly proud of himself too.

Sensory issues and sensory profiling

2013-04-15T05:57:00.000-07:00

Last year I went on a course, run by CAMHS, for parents of children who were newly diagnosed with ASD. The session that was the real eye opener for me was the one about sensory issues. So many things that were being said made a huge amount of sense to me, and explained a lot of J's behaviours since he was really quite little. I realised why he was reacting like he was to loud noises, or strong smells for example, and began to understand why they had such an effect on him.

More recently, his Autism Outreach worker felt that it would be of great benefit to have a sensory profile completed. She felt that noise, in particular, may be one of the biggest barriers preventing him from being able to take part in full time school in his own classroom. She helped us to complete the profile, and it was then sent to the Occupational Therapist at CAMHS to be analysed.

I was told shortly after that this analysis had shown that J had a very significant sensory profile, and last week I went to meet with the OT so that she could explain both the profile and her recommendations to me.

There are four areas of the profile - Sensory Sensitivity, Sensation Avoiding, Low Registration (missing or taking longer to respond to sensory stimuli) and Sensory Seeking. He scored 'more than most young people' in the Sensory Seeking section, but scored 'much more than most young people' in the other three areas. The conclusion was that J can be easily overwhelmed by sensory stimuli and may find it difficult to manage these experiences. She explained that, as well as being a person on the autistic spectrum who had a need for routine and structure, that these sensory issues would also mean that he will probably have routines and rituals in order to make his experiences more predictable. Also that he may have become reliant on others around him if they support routines that he can see are soothing, but that at times his experiences may be overwhelming.

A number of recommendations were made, which we have started to apply whenever possible already. These are:

Limiting the amount of information that is provided at one time
Limit background noise, and develop an understanding of music and sounds that J finds soothing.
J may benefit from wearing ear defenders.
When reading information, cover up the information that isn't being looked at - for example by covering it up with another piece of paper. This will help him being overwhelmed from trying to take in too much information at once.
To organise the environment and clear away clutter (this may well be the biggest challenge in our house!)
To label drawers and items.
To place everyday items (coats/shoes/bags) in the same place.
To use dim or natural lights.
Work in small groups or individually.
To identify a quiet space for J to have alone time if needed, preferably a pop up den/tent.
Identify soothing smells that J can wear (we already let him choose which fabric conditioner, air freshener etc we buy).
To engage in physical activities that keep the head upright such as biking or running.
To engage in activities that strengthen grip such as using playdough.
To develop gross motor co-ordination - sitting on a gym ball while watching TV.

Also recommended was the use of a weighted blanket (which we already have), drinking through a straw as a calming technique, getting J a fidget toy to use in class when he needs it, and introduce hard chew edible food items such as cereal bars. She talked about how, if his teacher could see that he was starting to become overwhelmed that she could give him a task to do, such as taking a note to another teacher or to the office. This way he can leave the environment that is starting to overwhelm him, but is not just being left on his own to get more and more distressed.

She also couldn't praise highly enough the benefits of getting a trampoline. So that was the first purchase made. And even though the sodding thing took 5 hours to assemble yesterday, it's a huge hit already. J was bouncing last night, back out there at 7:30 this morning, and back to school today has been a lot less traumatic than I had feared. He's out there now, with his littlest brother, bouncing as I type.

I was with the OT for over an hour, and really felt that it was of a huge benefit. All of her recommendations make really good sense, and I believe that they will help relieve some pressure for J. I will also make school aware so that they can understand what sort of an impact sensory issues can have on him, so hat they know about the recommendations, and how he can be helped if his environment is becoming overwhelming.

I feel further equipped in ways to help my biggest boy cope with life and the environment around him. And that can only be a good thing.

Where is the respite?

2013-04-08T10:37:00.001-07:00

A couple of months ago I wrote a post asking about people's experience (or lack of it) of respite care. The responses were varied, but mostly that there is a definite lack of any sort of respite care being offered to parents and carers.

Then today I read this article from Disability Scoop. It's an interesting read, and reports on a study that showed that just one hour of respite care a week could mean a huge positive impact on the relationships of the parents interviewed. It also mentions a previous study that showed children and young adults with autism, whose parent or carer was in receipt of regular respite, were less likely to need psychiatric hospitalisation - a fairly significant finding in my opinion.

So where is this respite? I certainly have never been offered any. A few weeks ago I was told, by a friend about a charity called Kids Short Breaks. My friend has a child with a diagnosis of ASD, and was told about the charity by another parent in a similar situation. My friend was offered 6 hours per month of respite for their child, and my friend urged me to get in touch with them. I did so, explained about J's diagnosis, and how he was only currently able to attend 1 hour of school per day. But then I was asked when I lived....and told that the local authority in my area does not provide the funding for this respite. My friend only lives 10 miles or so down the road, but is just over the border in to the next county. So whilst the local authority in the next county deems that a parent of a child on the autistic spectrum deserves 6 hours per month of respite, my local authority has blown a big fat raspberry and told me to shove off. Well that's how it feels anyway. What makes me angry the most is the fact that there is no consideration to individual cases. No one has weighed up the evidence and said, you don't really need respite, carry on as you are. No one has said that another case is more deserving and respite will be offered. My local authority has just said a big fat NO to respite of this kind for anyone at all.

So never mind that there is some evidence that it can have a positive effect on the well being and relationships of the parents and carers, and even a positive effect on the mental health of the child or young person in question. Everyone carry on as you were.

An update, and looking to the future

2013-04-04T02:27:00.002-07:00

I've been lacking a little in inspiration to blog lately, but I thought I would give a brief update of how well things are going for J just now.

For the last week of term he went to school for 2 and a half hours each morning, and spent the whole of that in his Year 5 classroom, doing the same work as the rest of the class. He seems to have really enjoyed it. The plan is that, after the first few days of term after Easter he will increase to doing full mornings. He won't have to go to assembly, but will be able to stay in the classroom and read a book instead. Again, he seems excited at the thought of this which is brilliant. Once that is established then we will look at staying for lunch etc.

Yesterday he was invited to a friends house. The friends mum, who is wonderful, suggested that he go for an hour to start with and then see if he wanted to stay a little bit longer. He ended up staying all day, nearly 8 hours! I honestly can't remember the last time, if ever, that he was able to do that. He came home tired but happy, an incredible achievement.

I have an appointment next week at CAMHS to discuss his sensory profile, which I think will be extremely interesting, and hopefully I will be able to bring away from that some recommendations which will further help with his reintegration back in to school.

As for me, I'm starting to think about the future a little bit too. My recent trip to Westminster has rekindled my enthusiasm for all things political, and has inspired me to start studying again. I am hoping to start an online A level in Government and Politics within the next couple of months, and feel really excited about that. I hope that it won't be too long before I can think about going back to work too. As far as my working life has gone, I've only ever really done jobs that fitted in and meant that bills got paid. I've never really known what it is I wanted to do, or been a huge success at anything. I intend for that to change. Watch this space.

Progress, positive steps, and meeting Edward Timpson

2013-03-20T15:13:00.000-07:00

This week has been incredible!

It began on Monday with me taking a trip to Westminster, thanks to Tots 100, to meet Edward Timpson, the Minister with responsibility for special educational needs and children with disabilities. I went along with other bloggers, all of whom have a child with SEN. Before going in to meet the Minister we met each other, explained who we were and about our children, and why we blog. Then we went in to meet the Minister. He had been briefed beforehand about us and had also apparently read bits of our blogs. He wanted us to go around the table, and explain our circumstances. I thought that he seemed genuinely interested in each of our stories. When it was my turn I explained about J's diagnosis, the current situation with his education, and that we were nearing the end of the statementing process. The Minister asked me at this point if that was something that school had done for us, so I explained that it had only happened because we had put in a parental request. I also emphasised that this had only been possible because of the support we had been given from Parent Partnership, and how grateful we were for our supporter.

I ended up not really taking notes, as I had intended to do, as I was too busy listening to what everyone had to say. But I felt that it was a really useful discussion, and one that I was very glad to have been able to be a part of. The Minister listened to everything that we all had to say, and I felt that he understood our frustrations with the current system, He also understood the need for a change in culture in order to be able to move forward. He also talked briefly about Nurture Groups and Keyworking, and it was apparent he felt that these were very important in the future of SEN.

I left feeling buoyant, feeling as though my opinion mattered. We were also encouraged to keep in touch, and to forward any information that we thought was useful, which again made me feel as though our opinions and experiences were important. I also felt like 'Susan' again for a few hours rather than just 'Mum' and I loved every minute.

I arrived at St Pancras to catch my train home, and had a phone call from Dadof4Husbandof1 to tell me that.........J's proposed statement had finally arrived!! To keep it brief, it gives him 20 hours of support, on top of the 5 hours he is already getting, which gives him pretty much full time support. We are very happy with it. I met with my afore-mentioned totally brilliant Parent Partnership supporter yesterday to go through it in detail, and I think it is exactly what we were hoping for.

And as if that wasn't enough good news to be going on with, here's some more:

From tomorrow J is going to try doing 2 hours 15 minutes each morning at school, rather than just 1 hour, all of which will be with his Year 5 class. He will do an hour of maths, followed by an hour of literacy. There is morning playtime in between but he has the option of spending that with a teacher in one of the classrooms if he doesn't want to go outside. I don't know if he'll manage it or not, but the important thing is that he has asked to do it, and has been incredibly excited about the thought of it all day today.

My cheeky monkey 4 year old has been awarded headteachers award for his class this week, so we'll watch him get that in assembly on Friday morning. He's very proud of himself, and I'm extremely proud of him.

Oh, and my lovely big sister is expecting her first baby, and I couldn't be more excited!

I wish I could bottle the feeling I have this week, it's incredible. I feel like a weight has been lifted.

I feel like we might just be getting back to normal again.

Unpredictability and keeping faith

2013-03-13T13:49:00.001-07:00

I had a bit of me time today. Dadof4Husbandof1 did the school run this morning, and I got ready and headed out. I had a mooch round the shops, and then went and had lunch with a very lovely friend.

In the meantime J went on a bit of an emotional rollercoaster. He wasn't at all bothered about me being out for the day, which is a huge achievement in itself. I wouldn't have been able to do it just a couple of months or so ago. He didn't know exactly where I was going, or what time I would be back, but he was fine with it. Him and Dadof4Husbandof1 had an expedition to the library and then to the local museum, before it was time for him to go to school for his lesson. He loved this, but when he got to school he got very anxious and tearful, and had to be prised off Daddy to get him into his lesson. Dadof4Husbandof1 phoned me and we had a conversation along the lines of, "I'm not sure he's ever going to be able to get back into school".

But then, and only 10 minutes later, school phoned Dadof4Husbandof1 to reassure him that J was fine. Not only fine but he had decided that he would like to join his class, in the classroom, for their literacy lesson. He didn't want to be in the pod, but he chose to go into the noisy, busy classroom. And he stayed there for the whole hour. And now he plans that every Monday and Wednesday he will join his class for their literacy lesson.

How fab is that???!!!

Every time I wonder how on earth we are going to move forward he chucks in a surprise to keep me on my toes. He doesn't realise it, but he's reminding me, "Don't lose faith Mum, we'll get there, we can do it"

And we will.

And we can.

Some days are better than others

2013-03-11T14:32:00.000-07:00

Some days are better than others.

There's a fairly obvious statement to begin my first blog post in nearly a month.

But it's something that is hard to remember sometimes. That I need to expect that there will be downs as well as ups, but that a better day could be round the corner. J has had a tough couple of weeks, and this morning saw a meltdown on a scale we haven't seen for a couple of months or so.

At the time it happens it feels like the worst thing in the world. I go through a whole range of emotions. Sadness, anger, helplessness, relief when it begins to subside. I feel that I'm getting better equipped to deal with them, but they still seem to come out of nowhere and are impossible to predict. But once it is over it seems less significant. Once he is that happy, laughing, smiling boy again it seems like I must have been dreaming. That it didn't happen. That it won't happen again.

I wish that I could wipe these moments out. To make it easier for J. To make it easier to me. To make it easier for all of us. But I know I can't. I know that this will be a feature of our life. I think I need to make sure that we forget about the meltdown as soon as it's over, and remember that there's a good chance that tomorrow will be better.

And maybe not specifically the day after today, but it will get better in the future. It will get easier. J will get back to school. We will all get back to 'normal'. It will get better.