Autism - 2 years after diagnosis

two years after my son was diagnosed with autism


Two years since were were told that Eldest likely has autism, two whole years since our lives took a sharp change in direction from the one we had planned.

Whilst the first year after diagnosis was tough, the past year has seen us regain some of our family mojo. We are starting to celebrate the special moments more often than we battle through the tough times.

School

The biggest change last year has to be school. After a year and a half of battling, we have found a school which is able to support Eldest. No more battling for the right support, or fighting against exclusion.

Despite my initial hesitation about moving to a special school, the new school has helped him to calm down and his previous anxiety has virtually disappeared. He has gone from several behavioural incidents a week, to none in the 9 months since he started at school. That's right - not one!

STOP button. Our favourite technique introduced by the new school. When you say "Stop button", you need to stop what you are doing.  stopping all behaviour and waiting for instructions when the teacher calls out "Stop button". We are now using this at home to get Eldest to stop unwanted behaviour, and whilst we are not quite as effective as school we are getting there.

Knowing our school battles are over means that we can finally start to relax, as we don't have the constant worry of getting a phone call from the school to come in and discuss the latest behavioural incident or a potential exclusion.

This year I hope that school will be able to focus more on the academic side, as Eldest is still behind expected levels for his age despite his potential to excel.

Key Milestones

The biggest excitement of the year was seeing Eldest overcoming his resistance to writing. I still get a kick each time I see him start to draw a picture or write something down, and am so pleased that he no longer gets distressed when asked to write something out. I know it is just a matter of time before he writes his first story for us to enjoy.


Our boy has also started to enjoy reading. The joy of finding him sitting with a book reading aloud to himself is indescribable. You will often find me hiding just out of sight, listening to him reading and smiling like a Cheshire cat. I hope he continues to enjoy reading as it helps to keep him calm, unlike screens which seem to cause him to go into over-drive when he has been watching for too long.

Another big milestone was getting dry overnight. This had been a struggle for us, and we were beyond excited at being able to wave goodbye to the overnight pull-ups.

This year I am hoping that we will be able to add riding a bicycle to the list. He is almost there but still wants us to hold the bike and run behind him. I think this is just a matter of confidence, but he refuses to try without someone holding on. Thankfully we have a bike balance buddy to save our backs.

Social Skills

Social skills have always been one of the biggest challenges, and this year we have started to see Eldest make attempts to think of others.

At school he is starting to ask what other people are doing rather than insist they the play his way, and I was especially pleased to see him think of his sister in the run up to his birthday, when he suggested that she may want to invite one of her friends to his party.


We are using boardgames to encourage turn-taking. These usually last about 30 minutes before we need to abandon the game, either because he starts to try make his own rules up (to suit himself) or he gets upset because the game is not going to plan. Our aim with these games is that he learns to wait his turn and is able to lose without getting extremely upset.

As Youngest grows up, finding the balance between what Eldest & Youngest want can be a challenge. Youngest no just does what Eldest tells her to, which can be an issue for Eldest and is causing increased tension between the two as she starts to do things her own way.

I think the next year is going to be an interesting one. I hope that Eldest's social skills will continue to develop and that he will learn to start taking other people into consideration when doing various activities and games.

Emotional self-regulation

Another big challenge for Eldest is dealing with heightened emotions.

We definitely have fewer meltdowns these days, however I think that is more down to us being more aware of Eldest's triggers and managing the situation around him. This can be very tiring, and it feels like we are constantly trying to prevent things from escalating.

The biggest triggers at the moment are linked to screen time. Screens - the bain of my life!!! You could say Eldest is a "little" addicted, which means we have to control his screen time quite carefully.

Saying no to screens leads to disappointment and frustration. This is something that Eldest can't deal with well - it will often take a couple of hours for him to settle down after being told No. Too much screen time leads to over-excitement. This over excitement which has Eldest literally bouncing around the house can quickly spill over into meltdown mode. Either way we have a little boy with heightened emotions that he struggles to deal with, and we need to work hard to bring him back to a calm level.

My biggest hope for the year ahead is that Eldest will continue to learn to self-regulate his emotions, and that he will become better equipped at dealing with frustration and disappointment. I also hope that his obsession with screens will become more manageable, and that we wont be battling with him each day to limit the time he spends on them.

The Rest of the Family

On the whole we are doing ok as a family.

It feels good not being in crises mode, and both Dad & I are starting to recover from the stresses of the year before. Finding more positive moments is helping us to bond together as a family, and we are enjoying life a little bit more.

After a temporary role change in 2015, I have been able to settle back fully into work and am enjoying having something else to focus on. There are weeks when trying to cope with work and home life is tough but it is nothing like the year before when we were struggling with school and getting an EHCP .

Weekends are usually spent at home as we all need time to unwind after the week and we want to avoid any potential challenging situations which can quickly arise when we go out. We have learnt how to cope with some situations like eating out, however this takes a lot of planning and management of the situation which means that we don't do it as much as we would like.

The biggest plus this year has to be the community of support that I have found online and in local support groups - having people in similar situations to talk to has been a lifeline. As one mum said to me "We do have such drama and ups and downs but they [NT parents] don't get the same sense of community we all have"

We do have such drama and ups and downs but they don't get the same sense of community we all have

Hopefully we will be able to get out more as a family by this time next year, and we will have more positive moments to celebrate.

In Summary

All in all, it has been a good year with some moments to celebrate and others which require a bit of planning and patience. Life still requires a little more effort to get through, but we seem to be heading in the right direction.

Spectrum Sunday
Keep Calm and Carry On Linking Sunday


14 comments

  1. Thank you for sharing this. This fills me with complete confidence and hope that Sonny will in time settle and grow his skills. I am so pleased for you for all the progress you have made over this last year especially where school is concerned. I hope some day soon we are able to write without fuss and play board games together as a family.
    #spectrumsunday

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    1. I am glad this filled you with confidence and hope for Sonny. I have no doubt that in a years time you will be reflecting on the growth in Sonny's skills over the year - our children may develop at a different rate and in a different way, which makes celebrating their successes all that more special.

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  2. This is a very informative post about the progress that can be made with the different strategies you're using and with support. It is very generous of you to share what you're going through as it will help families that might be going through something similar. I'm so glad your son is doing well at his school. #kcacols

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    1. Thank you. One of the main reasons I blog is the hope that our experiences will be able to help other families going through something similar, even if it is just to show them that there are others going through similar challenges to them.

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  3. Sounds like you are all moving forward brilliantly. The right school makes such a difference to every part of life. #KCACOLS

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    1. The right school has made a HUGE difference for us.

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  4. This is a very nice article, one of my son has got autism and I don't really talk about it. There is a lot of struggles to be honest and as a working mum I find myself always tired and stress. I wish my son will have a good development progress as well like yours. Maybe it's just giving time and attention as well which I find it difficult at the moment as I have 2 years old boy who doesn't understand his brother. They often fight or make a mess or can a bit cheeky together. My 2 years old does copy his brother most of the time that I felt
    Like I'm dealing with 10 children when they are together. Thank you for sharing this. #KCACOLS

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    1. As a working mum, I also find it difficult to give time and attention. I also feel like I am also constantly trying to balance between my Eldest and Youngest (she is 4) as they give us the run around or are having gos at each other.

      The one thing we try to do is take each day as it comes, celebrating the good ones and working out how we get through the challenging ones. Things are still really tough for us, which is why I need to remind myself to celebrate the positives :-)

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  5. What a difference a year, or in this case two years makes. There is such progress here. In our home David is experiencing less meltdowns. Anthony is also beginning to 'get' writing. So your lad is doing so well. Life in an autism household will always require a bit of planning, prep and patience (if not a lot) but I think you are right - so many positives to take away. xxx Thanks for linking to #kcacols, and hope to see you there again xx

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    1. Ann, great to hear that you have great progress and home as well.

      It would appear that my writing about fewer meltdowns triggered something in the universe, and we have had 2 weeks of meltdown central. The ups and downs of an autism household. :-)

      Look forward to joining #KCACOLs again.

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  6. I'm so glad you guys found the right school!!! My oldest is on the spectrum and school was really challenging. We ended up homeschooling because we couldn't find the support we needed. I love that his autism is very autismy!! I think that is my new favorite word!!! #KCACOLS

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    1. the right school has made a huge difference, thankfully as i would not be that great at homeschooling. Getting my son to eat breakfast is enough of a mission for me ... couldn't imaging trying to get him to do school work - we would just end up fighting.

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  7. It sounds like he has made some brilliant progress. Your successes give me hope. We are a few years behind on this journey and things like writing and potty training feel like they will never be achievable right now! Thanks so much for linking with #SpectrumSunday. We hope you come back next time.

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    1. I never imagined we would be here. I still get a thrill each time i hear him take himself to the toilet or I catch a glimpse of him holding a pen or pencil.

      I look forward to joining again next time :D

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