Look Who’s Back

Hey! I’m back! How is everybody? It’s been a while since I’ve touched this blog, frankly because I’ve been preoccupied just living. But I’m making a return to this blog with the renewed goal of continuing to share my experiences and advice for managing asperger’s syndrome.

From now on, you can look forward to (hopefully!) more regular posts. I plan to post at least once a month, so we’ll see how that goes.

I’m going to start by doing some retrospectives on my existing posts – honestly, re-reading through the thoughts of my eleven-year-old self has been quite a treat – and hopefully my newer, wiser self can provide some better insights. I also plan to record some of my experiences with volunteering, and my experience of a Cambridge University residential trip. And of course I’ll be doing lots of updates on strategies for how to cope at sixth form.

I’ll also be posting some content related to my own interests. For example, short stories I’ve written or thoughts on books that I’ve read; some of which will be explicitly related to my aspergers, some of which will just be my own opinions on things. I’ve found that being on the spectrum influences every part of my life, as I view everything through a neurodivergent lens, and so recording my reactions to things and the topics that come up in my own fiction has been useful for me in spotting patterns in how my aspie brain works, and I hope this may also be of interest to you.

The transition from Primary School to Secondary School – it’s not all that bad!

I had been at my Primary School for 7 years and was accustomed to the buildings, staff and everyone around me. I‘d had the same teacher for 4 years and had all the support I needed. But when the time came to decide on a Secondary school, things were actually ok. I was taken to have a look at the 2 secondary schools in my area whilst I was in Year5 and then again in Year6 so it wasn’t all too much to take in and I was quite relaxed. Although I like doing things in a traditional way and in a routine, I also like new, fresh starts and a chance to make myself better, so the thought of what a new school could offer me made me feel positive.

We went to the Open Evenings which were really busy and although I was excited and fascinated it was difficult to relax. I spent a lot of time smiling, but still avoiding looking at anyone. Then we went for a private tour which was better and then we met with the head of SENCO at one of the schools. I was included in all of the meetings and although I felt a bit awkward I could tell that the teacher we met knew so much about Aspergers that I felt like I trusted her right away.

Making the decision between the 2 schools was difficult so we sat down as a family and the tactic I used was to list all the pros and cons of each school. Once the decision was made, my primary school and my parents made appointments for me to visit the school – just for half hour at a time. I sat and ate lunch with a teacher so I could see the dining room at its full capacity. I visited and watched the classroom change-overs so I could hear the bell ringing. I saw a break time and got the chance to walk round the school when it was quiet. After every visit I wrote down any questions or requests I had that I hadn’t been brave enough to ask in person.  My mum could email the SENCO and find the answer, or we would arrange another visit. I was given a map and shown the contact book that we would be using. I liked this because I was able to analyse my surroundings, and when given an opportunity to find where I was I was thrilled because using what I’d learnt made me feel confident, even if I was in a new place.

My primary school was especially helpful: towards the end of the year I became part of a small group and we would talk about our worries and feelings with a teaching assistant. She gave us a little book which contained advice and tips on what to expect and importantly, how to respond! My best friend was also going to the same school and our parents both asked if we could be kept together in our Tutor Group. I think that thanks to both schools working together, this was made possible.

Over the summer holiday my new school emailed me my timetable. This was great because I was able to colour code it and put copies on my wall. I was also sent my profile. This is a piece of paper that all my teachers would have before I got there which explained my likes and dislikes. This was brilliant because I knew then that I would not be put in any awful situations – like the teachers telling me to “look at me when I’m speaking to you”. Something which I am just unable to do.

On my first day we had arranged that I would go in with my friend from her house so we didn’t have to worry about meeting somewhere and we could go in together. I was given a timetable and map along with everyone else but I felt confident because I had already seen these before.

I was given a locker and lots of books but it was all very exciting.

So far everything is going really well. There are of course some issues, mainly with not knowing how to respond to other children, there are so many personalities and it can get very busy. What helps me is talking it over with my family as soon as I get out of school and being given a resolution – so for example, the lunch time queue for food can be very busy and jostling so my mum suggested asking the school to put my plate to one side for me to collect. Once I knew I had this option I was able to deal with the queues, knowing that I had a way out but so far I have not needed it.

The SENCO are also very pro active in my school. I find it almost impossible to ask for help, especially when I am upset but the school has teachers specifically to look out for us and one of those teachers was coming to find me every week to make sure I was ok. Now I go to see her every other week. I keep a list in my head of anything that is bothering me and she will go through the types of things I can say to people to help me resolve things.

Everything is really positive. The only negative thing that I can really think of at the moment is that sometimes when someone knows you have Aspergers and they have read about what Aspergers is, they think a “one size fits all”, when it doesn’t. I don’t mind too much because it is really good that they have tried to understand it but sometimes I feel a bit awkward when they are trying to help me but it’s really over the top. It just shows that as Aspie Kids, we are all different and until you get to know us as individuals you won’t know how our needs differ. Because of my communication problems I can’t tell you if you are off track but it’s nice that you’ve tried!

Actually my communication has improved massively since starting secondary school. I know that I only have to be with a teacher for a single lesson, so they are only looking at me for an hour – not like in primary school when it was 6 hours! So I feel like I have a break in the intensity, even if I will be seeing them the next day.

Having Aspergers matters to me but it doesn’t bother me, if that makes sense? I don’t feel I need to tell people if I don’t want to because I think people judge me for me, not because I have Aspergers. My Aspergers is just who I am, it’s not a separate thing. People can’t like me but not like my Aspergers, because it’s the whole of me. If you like me, you like that I’m an Aspiekid, and so far that’s working just fine!

The (very) early years of having an Aspie-Kid

Our gorgeous daughter was born in 2005. You may not know Erin but she is beautiful, kind, intelligent, has amazing creativity and to us, is perfect in every way (takes after me I think!). She was our first child and my husband and I were the ultimate proud parents – although we really had no clue and I thought I deserved a medal for just getting out of the house before 3pm!

We realised Erin was not happy with other children pretty much as soon as she was old enough to know they were there. She didn’t really crawl and when other babies would crawl over to her she would start to scream and cry – a real “end of the world” type cry. As time went on and we graduated to soft play centres, Erin would be the one sat on my feet, wanting to investigate the toys but from the choice of staying attached to me or playing, she would choose the former. She didn’t need me to acknowledge her there, on my feet, but she would not let herself go unless I went with her. It’s worth saying we weren’t with strangers, I had the most amazing post natal group of friends who became my life line of support and who we met with once or twice a week every week for 5 whole years! One even became Erin’s Godmother! Erin knew these children and their parents but it made no difference.

When Erin was up and walking we would go to the park. On one occasion Erin was sat in a timber car up a ramp. It had a side window, a tiny gap that was about 5 foot off the ground. Another child slid onto the seat beside her and Erin shot out of this tiny gap to get away – luckily I caught her! Our friends just accepted she wasn’t good with other children. Nursery was a nightmare. She went for one day a week so I could work. I lost count of the number of calls I had to go and collect her because she had been crying so much she had made herself sick!

Erin liked everything just so. But that’s not unusual, many children like things in a routine. Their drinks out of a certain cup etc. I can remember one day I was carrying Erin upstairs for her nap and I had been dusting and had not put an ornament back onto the window sill. Erin screamed and cried and was burying her head in me saying “put it back, put it back”. I think it was this final reaction that made me realise that something was going on.

Erin’s dad and I did some research and we realised Aspergers seemed to fit the bill. Erin was clearly very bright. We still had very little understanding though and kind of muddled through. Erin was so well behaved but just got sad. It wasn’t until Erin was in about Y3 at Primary School. It was Christmas time and she was standing underneath a gazebo at school and I could see her face twitching. By the time we got home the twitch was worse. Having no idea I said “what on earth are you doing with your face??” Now knowing that that was probably the worst thing to say! The twitch got worse over the next few days so much so that in one period of 90 seconds she twitched over 60 times. I made an appointment with our GP who immediately referred us to a neurologist. Terrified does not come close to how we were feeling as parents. But it was Christmas so we had put up all the decorations, cards were hanging from every wall space and we tried to cheer everyone up by constantly talking about Santa.

We saw the neurologist within a matter of days. He examined Erin and told us it was stress. Stress! What on earth did my 7 year old have to be stressed about? My God, were we really such awful parents? He was great and explained that a child’s stress is completely different to an adult’s stress. Even exciting, positive stimuli could cause stress to a child on the spectrum. Erin’s stress levels were so high they had manifested themselves into a physical release.

We were referred to CAMHS. Initially I refused to accept the referral. I was mortified that my child was stressed and felt that CAMHS dealt with really ill, depressed children and that was not my daughter. My GP spoke to me and reassured me that they would be able to help. I am so glad we went. The wonderful Dr we saw chatted to both me and Erin and felt that Erin did have Aspergers. She explained the importance of keeping stimuli to a minimum and taught us both about the spectrum.

I cringed at how we had done just the opposite of that over Christmas. The guilt you feel as parents is indescribable. I grew her in my tummy so ultimately I felt the blame rested with me. How could my daughter who is so loved, feel so sad? We analysed over and over again everything we had done “wrong”. Then the fears for her future enveloped us, would she be happy? How could we make her happy? How could we protect her from this huge scary world? Well, with lots of research (and I mean loads) and lots of support from some fantastic friends, family and school, we put in place some great strategies for keeping routines and helping Erin know exactly what was coming next and importantly what was expected of her. Erin simply transformed.

Erin, at times, had a kind of sadness about her. People have said to me since, “oh she was such a miserable baby” (yeah thanks, that’s really great!) but now we understand why. Now that we understand so much more about what works for Erin she has absolutely blossomed.

I could write forever about our experiences, this all just seems so brief, but I think knowledge is truly key and Erin is the one who gives us, as her family, so much knowledge about where she is coming from, it makes it a privilege to be able to help her overcome the massive challenges that she faces in a simple day. We couldn’t be more proud of our Aspie-Kid and we love her to bits!