Moving on

We have come to the end of the last full week of term for the 2020/21 academic year. It’s felt like a big week for each of the kids.

Katie has been invited to a friend’s sleepover and is there now. She came out of school absolutely beaming the other day because she had been invited over with 3 other girls from her class, and desperately wanted to be able to go. She was so excited! Having been told yes she could go her anxiety kicked in and she wanted to know every tiny detail of what was going to happen – what would they be doing, would she be able to sleep with the lights on but not have the others know it was her that wanted them on, what would they eat, what would the sleeping arrangements be, what if she wanted to talk to me etc.

I asked Katie if it was OK for me to phone her friend’s mum so I could let her know how much she was looking forward to it but also give her the heads up on some of her worries and get some answers to some of them. I’m all for speaking up about Katie’s diagnosis if it helps people to understand her and makes situations less stressful for her, but I’m also mindful of the fact it’s Katie’s diagnosis not mine, and for now she is really reluctant to tell people about it. But on this occasion she said yes it was fine but only if I phoned the mum and we didn’t text. She didn’t want a conversation left on a phone that someone could read.

The friend’s mum was lovely. She listened and asked questions, and it was definitely reassuring for Katie to know that her worries were being taken seriously. Her friend’s mum is using a sleepover company who come and set up indoor teepees so she sent a photo of what they look like so Katie could see in advance. She promised lights on was no problem and also said she would be sleeping downstairs in a room next to the girls so she could be there if anyone needed anything. Katie was worried about the tents all being in a line and that she wouldn’t be able to see the others, so her friend’s mum said she would make sure they were set up in a 3 and a 2 opposite each other. She also said Katie didn’t have to talk to her in front of the others if she was worrying, she could just tap her on the leg or they could have their own signal so that she could talk to her in private if she wanted to. She has been sending me photos through the evening so far, including one of the other girls having a dance competition while she and Katie are the judges. I know Katie will have felt much too self conscious to dance so giving her a different role but keeping her involved is really helpful.

I’ve also done what I can at home to make the sleepover a bit easier for Katie.

  • We packed her bag together and she re-packed and moved things around a couple of times until she had everything exactly where she wanted it
  • She doesn’t like wearing pajamas and just sleeps in knickers at home. She gets very hot. We found the smallest, thinnest pair of shorts and vest top that we could and she tried them on and laid down in them to check that the label was ok, they weren’t scratchy, and she wasn’t too hot or uncomfortable
  • She has her fiddle toys with her
  • She wanted to take a couple of teddies but worried the others wouldn’t need teddies. I told her I bet they will, so she may be happy to take them out when she gets there, but if not she has packed them in her bag anyway so she knows they’re there with her
  • She always ties her hair up when she goes to bed and is particular about how tight it should be and where the ponytail should sit on her head, so I tied it up for her before she left
  • She knows I’m keeping my phone on and I will answer any time if she needs to call / will come and pick her up if she needs me to
  • We have no plans for tomorrow. She can come home and flake

I would describe myself as a bit of a worrier but nowhere near on Katie’s scale. When I was younger I just looked forward to sleepovers and would head off without a second thought. I hope she is having a good time and can keep hold of the excitement she felt initially.

This is also the end of her last full week at her current school before she moves on to her new school. The Inclusion Lead at her current school, who I’ve had so many issues with and found to be so obstructive about everything, is now on maternity leave. Since she’s been gone and I’ve been dealing with a different member of the SEN team Katie has actually had regular ELSA sessions or been told in advance if they’ve needed to be rescheduled. She has had the same member of staff each time (albeit it’s only been for the last 4 or 5 weeks of term) and today she came home with a note:

“Dear Katie, I have really enjoyed working with you this term. Thank you for being you. I will miss you at Falkland but know you will have a fabulous time in your new school. I am giving you a special stone to help you with the move to your new school. Keep it in your pocket on your first day and give it a rub whenever you feel you need to. It would be lovely to hear from you and how you are getting on in your new school. With love, Miss C x”

It makes such a difference to have people like Miss C and her friend’s mum who are positive and who listen to what Katie needs. It makes me wonder if we’d been dealing with Miss C from the start would we not have ended up finding Katie a new school.

There’s not too much to say about Alice at the moment. She has the least amount of change coming up out of the three of them, but this is her final year as an infant and when she goes back to school in September she will be in the juniors (year 3). She’s growing up! She’s had a lovely end of year report from her teachers and for the most part is really happy at school, but one of her best friends is moving away in a couple of weeks and she will definitely miss her a lot and find it strange going back to school without her. It’s also in the back of my mind that year 3 is when Katie really started to struggle and I hope we don’t see the same for Alice – but they are very different children and there is no reason to think that Alice would struggle just because Katie did.

Matthew has two more days left at preschool and then he leaves because he will be starting school in September. I love love love his preschool. All three of our children have gone there, and all three of them have been really happy there. When I first went back to work we used to send Matthew to a childminder a couple of days a week. He either cried when I dropped him off or just put up with being there. When we visited his preschool he loved it straight away and from the first day he walked straight in and never looked back. I’ve never had to send him in crying or felt guilty for leaving him there. The girls were the same, and they all looked forward to their preschool days. It’s what you want for your children – they have felt safe and encouraged while they’re there and they have been able to learn through play. I’m talking about school in a positive way to Matthew but actually I’m really quite sad that he’s coming to the end of his preschool days. It’s like this lovely little cocoon where everything is so exciting and they can be themselves and they’re encouraged with everything they do. The plus side for school is that we know Matthew’s teacher as she taught Katie as well. She’s really nice and she waves at Matthew every day when we’re at school picking the girls up, which he loves.

This definitely feels like a summer of transition. The small people are all growing up, moving on and becoming slightly less small!

About Katie

Pretty much everything I’ve written so far has been about the things Katie finds hard in life – that’s just because that’s been a focus of our lives at the moment while she’s been going through a tough time, and we’ve been doing battle with school and applying to her new school. She has a giant personality and there is lots that I haven’t written about.

Katie is my mini adult. She is in a big old rush to grow up (until anyone mentions getting a job or leaving home). I often call her mummy number two as she loves to look after Matthew (although more so when he was smaller than now, unless he’s in the mood for her to baby him and then she’s all over him again!) She was 4 when he was born and was always fetching nappies or clothes, pushing him in his buggy, trying to entertain him if he was crying in the car or bouncing him in his baby chair. These days she likes to read him his bedtime story or give him his inhaler. She also likes to spend time with adults and help with ‘projects’ or what she thinks are grown up things. She will happily do the washing up, or keep John company on a tip run, feed the cat or help paint a fence. In many ways she likes being the oldest of the three. There was no sadness when she learned that Father Christmas and the tooth fairy weren’t real, just excitement that she was now a big girl and in on the secret. She is brilliant at still pretending for the other two and thinks it’s hilarious when I mention anything about Father Christmas to give me the LOOK to show me that she hasn’t forgotten it’s all pretend. She has recently turned 9 and the pre-teen tendencies are already rearing their head. She likes long soaky bubble baths, experimenting with makeup and is already pestering us to let her get her ears pierced and get a mobile phone. Her bedroom is already so messy it’s a bit of a health hazard and I dread to think what it will be like by the time she’s a teenager.

Katie is my green fingered girl. Since she was tiny she has loved being out in the garden. She doesn’t care if she’s planting vegetables, pulling up weeds or clearing leaves – anything will do. She doesn’t get bored of it and will happily spend all day out there. John often comes in laughing about the conversations she has with the plants, keeping up a constant stream of chatter while she’s working with them. I’m pretty sure she prefers plants to people because she can say what she likes and they don’t answer back. School used to offer a gardening club once a week during term time which Katie did for a few years (pre covid. It’s not been running since March 2020). I loved picking her up and seeing her working in their eco garden, pottering around and looking totally at ease. In the first year that she went to gardening club she won the school’s eco award because of her enthusiasm. A couple of years ago she went with some of the other gardening kids to go to the local garden centre to choose the school’s Xmas tree and then plant it. She was soooo excited to be chosen and it was such a lovely thing to happen as it boosted her self esteem as well.

Katie is an all weather girl. As soon as there’s a hint of autumn being on the way she’s getting excited about winter and the possibility of snow. All the kids get excited when it snows and we’ll pile on gloves and hats etc and get the sledge out, but the reality is that the other two are cold and soggy and whingy after about 15 minutes and want to go inside for a hot chocolate. Katie would stay out indefinitely. She doesn’t seem to feel the cold and will be rolling around making snow angels, building snowmen, sledging, trying to get the others to stay outside for a snowball fight, and bouncing on the trampoline and going on the slide because it’s more fun in the snow. When it rains she won’t just jump in puddles, she will take a running leap and make sure she lands hard enough that the puddle splashes up over the top of her wellies. I have videos of her gleefully pulling her wellies off and pouring all the water out of them, then putting them back on and soaking herself all over again. She never cares about her cold soggy trousers or wet and dirty socks. We went to Newquay last summer and the day we got there we popped down to the harbour quickly without having beach stuff, swim suits etc. Katie didn’t care at all. When the others were rolling their trousers up and just paddling she went in the water fully clothed and rolled around in the sand. She really doesn’t care what the weather is or how messy she ends up getting!

Katie is our little goof ball. Our nickname for her is Norbert because it just seems to suit her somehow. Good morning Norbert, that was a norby thing to do, love you Norb (it’s all said in an affectionate way!) For a girl who can carry an awful lot of anxiety and who can be very tense, she can also be very light hearted and enjoy just messing around. Parading downstairs in just her knickers and dancing around is quite a sight. Katie has no rhythm whatsoever so she will never try and dance ‘properly’, she will dance how she wants with limbs flying around all over the place, however she feels like it. She’s part of a children’s singing group locally and when they do performances there will usually be a minimal level of movement like stepping side to side or clicking fingers. Katie is always the one who is out of sync with the rest of them, who steps left instead of right or who is a beat behind but who has such a level of concentration on her face.

Katie is our chef. She likes cooking and we’ve got into the habit that when we do a shopping list she chooses a meal or a pudding that she wants to cook and then she’ll make it for us one day that week. She’s got a couple of really good beginners cook books and has done quite a few meals now. She’s happy getting on with it and doing it herself as long as one of us is in the kitchen just keeping a bit of an eye on things from the background. She usually does her meals on a Wednesday when I’m at work and John is home and it’s a nice thing for the two of them to do together. 

Katie has been a bookworm since she was tiny. She loved books from a way earlier age than the other two. We went to visit my sister in America when Katie was 4 months old and I took a load of books for the flight because even then she would spend ages looking at the pictures. It was a bit of a shock when Alice came along and I’d try and look at a book with her and she would just fling it on the floor or rip the pages! In other subjects at school Katie is where she should be age wise but in reading she’s always been ahead of her age. She’s always had at least 4 books on the go at any one time, mostly fiction but she does like The Guinness Book of World Records and she’s got one of 1000 animal facts that’s an old favourite. More recently this has fizzled out slightly but I think that’s because the horse obsession has taken over and at the moment she would rather watch You Tube tutorials on how to groom them etc than read about them. I also think that she’s so disillusioned with school that she doesn’t want to do anything associated with school at home, and for now that sometimes includes reading.

Katie is a generous little soul. When we’re on holiday she always wants to bring presents back for other people and she wants to help choose people’s birthday and Christmas presents. For John’s last birthday she insisted on getting him a little remote control car “because Daddy likes cars”. She kind of missed the fact that it was a kid’s toy and it was a cheap piece of tat really, but definitely one of those times that it’s the thought that counts! The other day she brought a book about fairies home from the school library and gave it to Alice to read because she knows Alice likes fairies, and when school had a book sale she didn’t buy anything for herself but brought a pop up monkey book for Matthew. 

Katie loves a good crafting session. This is an area that she and I are totally incompatible. I hate making things. I can barely even put a Kinder Egg toy together never mind help with 9 year old crafting activities. Glitter is the bane of my life and anything involving glue makes me cringe. Katie loves all that! Pre Covid I used to take the kids to a messy craft session at a local church hall which was held once a month and they got to make play dough and get their glitter fix and use all the stuff I don’t like. Katie also likes knitting. I don’t have a clue how to knit but my mum (Grandma) and John’s mum (Granny) can both help her, and she used to do knitting club once a week at school but that’s another thing that’s stopped for now because of Covid. Looks like I’ll have to put my hatred of all things crafty aside for a while and do more at home!

Katie’s ultimate love at the moment is animals, especially horses. As a toddler she was always so sweet to our cats. She never went chasing after them or pulled at their whiskers or tails. She never needed ‘teaching’ to be nice to them; she just was. She spent a long time asking us if she could have her own guinea pigs and eventually we said yes and got her two guinea pigs for Christmas – on the condition that they are 100% hers which also means cleaning them out, feeding them and changing their water. She looks after them pretty well and when she gets home from school she heads straight to the playroom to give them a snack. Getting her out the door is a bit of a nightmare as any time we go anywhere it takes her ages to go and fuss over the guinea pigs and say goodbye to them. Her favourite animal is horses. She was desperate for riding lessons and had to wait a long time for covid restrictions to lift a bit but now goes once a week, plus for pony days and stable management days in the holidays. She would live at her riding school if she could. She looks forward to every Sunday and spends most of her spare time on horsey things. It’s really lovely to see how happy it makes her and if her interest in animals stays as strong as it is now I hope she will be pretty fulfilled in later life if she can get a job that involves being with them.

Spare the rod spoil the child

There are a few things recently that I’ve mentioned in passing to friends or family of decisions we’ve made with Katie which have had a bit of a mixed reaction. I think sometimes me and John can struggle with how we parent her because we are bringing her up in a different way to how we were brought up by our parents and it can be a challenge to adapt our thinking.

There is evidence to suggest that autism may be genetic. From what I’ve read there are many adults who through their own child’s diagnosis come to realise that actually they are autistic themselves. This has not at all been the case for me. I knew very little about autism before Katie’s diagnosis and it has definitely been a journey of discovery, but not because it has helped me learn more about myself. The more I learn about autism the more eye opening it is. I’m learning an alternative view of the world and ways of processing information I wouldn’t ever have considered, and it fascinates me and baffles me. I think I’m about as neurotypical as you get. I think John would also describe himself as neurotypical, and certainly he finds it difficult to understand some of Katie’s reactions to things, which suggests he can’t identify with them himself. I would say we were both also brought up in a very ‘neurotypical’ way – respect your parents, do what you’re told, if you misbehave there are consequences. For me as a child this was fine. I was happy and I can’t fault my mum in her parenting decisions. They suited me and worked well on me for want of a better way to put it.

This way of parenting just doesn’t work with Katie. It confuses her and she ends up being very unsettled and angry. She doesn’t respect people just because they’re her parents / teachers / they’re an adult, she respects people if she feels they’ve earned it. She finds it very hard to do as she’s told unless she’s given a valid reason for it. If she asks for something and is told no she needs a reason behind the decision. Sometimes when she seems to be misbehaving, she’s really not. This is mainly to do with communication. She can come across as rude or annoyed when she isn’t, she is just very literal and doesn’t sugar coat things and she also finds it hard or impossible to notice the tone of her voice. She is also very anxious. Obviously being autistic doesn’t automatically mean you’re going to struggle with anxiety, and people can have anxiety without being autistic, but for Katie I think her anxiety is linked to feeling different and worrying that she’s done something wrong without always knowing how or why she has annoyed someone. My parenting with Katie is becoming much more about trying to make sure she’s at ease within herself and much less about discipline, but there is a bit of an internal struggle there sometimes that this doesn’t always match people’s expectations of what parenting should look like, or that we’re too lenient. I’ve given a couple of examples below.

Eating at the table

I’ve mentioned before that Katie doesn’t usually eat meals with us. She doesn’t want to sit and have a chat around the table and she doesn’t like the sounds of everyone chewing, breathing, cutlery on plates etc. The rest of us do still sit together because there’s no reason not to and those things don’t bother anyone else. So our approach with Katie is that if she wants to sit and eat with us she’s always welcome and we like to have her there. If she doesn’t feel like she’s able to that’s fine as well and she can take herself off to the playroom and eat on her own.

We find that Katie is much more likely to eat breakfast at the table with Alice and Matthew, but she hardly ever eats with us at dinner. I assume this is because she’s less stressed at the start of the day, whereas by dinner time she’s had a whole day of school or seeing friends or whatever it may be and she’s had enough and needs some quiet. It’s noticeable that when she does sit with us we can all just be together and it’s fine, because she’s chosen to be with us and can manage it. When we used to have everyone sat at the table for every meal because “that’s how it’s done” a lot of our meals were tetchy and argumentative because there were times Katie must have been struggling to be there and would constantly snap at everyone.

I have a friend who found her childhood quite tricky in some respects and has had issues along the way with her parents. As an adult she’s now being assessed for ADHD. We were talking about Katie not eating with us and her initial reaction was that she wished her parents would have done the same for her, very swiftly followed by “but there are some things we just have to do, and she’s got to learn to sit at a table”.

There is this idea that eating together round the table means quality family time. It doesn’t necessarily. For me, yes I like eating at a table with other people and I enjoy going out for meals. It’s nice to have a chat with people and sometimes eating together is the best time of day to stop other things and pay attention to each other. But it’s only quality time if it’s benefitting everyone and everyone wants to be there. It’s not quality time for Katie. What’s the point of forcing her to be in an environment that she finds stressful, that makes her irritable, and that gives her negative associations with food? There are a whole load of other ways to spend quality time with her where she’s a willing participant. She can spend time gardening with John, she can spend time showing me her favourite YouTube clips, we can play a board game together. As far as I can see the only real argument for everyone eating at the table is that it’s just more practical as the kids are dropping any mess onto the table rather than all over the house!

I’m also very conscious that Katie spends a huge amount of her time doing things she doesn’t want to do. I know this is true for anyone to some extent, but for me and John, for Alice and Matthew, and for most neurotypical people, the list of things we don’t want to do is a fraction of the size of the list for Katie. It’s also not always as simple as just not wanting to do something. Sometimes it will be because she’s 9 years old! But a lot of the time “I don’t want to’ is struggling with sensory overload and social difficulties on a daily basis. She already has to sit and eat her lunch in her classroom with 30 other kids 5 days a week. She comes with us if we go out for a meal and she can sit in a restaurant and manage OK and/or enjoy it, but she will most likely need to shut herself away afterwards. Home should be the place where she can be comfortable and do what she needs to do without being pressured or criticised. If that means taking herself away from a socially constructed idea that time around the table means quality family time that’s fine.

Sports day

Katie has always hated sports day. She spent most of her first school sports day in tears and wouldn’t join in with any of the races unless I did them with her. In year 1 and 2 she managed it on the day but there was a big build up to it at home beforehand with lots of worrying, talking about the races, how many people would be there etc. Last year sports day was cancelled because of covid, which I think Katie and I were both relieved about because she had moved into the juniors at that point so sports day would have been more competitive than previous years. It’s sprinting, hurdles and jumping rather than throw a beanbag into a hoop or do the egg and spoon race.

This year sports day went ahead but parents weren’t allowed to attend, again due to covid. I wondered if knowing that she wasn’t going to have an audience might help Katie but it didn’t. She was completely stressed out about it and couldn’t sleep just at the thought of the practice runs never mind the real thing. It was a bit of a no brainer for me and we told her she could take the day off school rather than do sports day. I just couldn’t see the point of making her attend.

I did get a couple of comments that it’s a slippery slope and if you let a child have the day off school just because they don’t want to do something it sets a bad precedent and they’ll be wanting the day off any time they don’t like something. Children need to learn resilience etc etc. I get that to a point but again this is more extreme than just “I don’t want to”. Every day Katie doesn’t want to go to school, but she still does. She doesn’t like PE full stop but she still does the lessons. She doesn’t like being in the playground but she still goes out there. She doesn’t like being surrounded by loads of other noisy kids but she still sits in a classroom that’s too loud for her. She’s an autistic child attending a mainstream school. She is already showing a stack load of resilience just by showing up every day. When there is an added stress on top of all the usual ones and she says it’s too much I’m not going to force it, especially when she has already struggled her way through three previous sports days.

If we had sent Katie to school for sports day this year I expect she would have had a meltdown or she would have shut down and not been able to take part anyway. She’s only ever had one full on meltdown at school before because she usually manages to keep a lid on things until she’s home or at least out the building. Afterwards she was embarrassed and she was worried about what everyone would think of her. She doesn’t want to stand out and she doesn’t want to feel like the ‘weird one.’ There’s no gain to forcing her into situations that make meltdowns more likely and damage her self esteem.

Being off school meant she got to spend the day with granny and grandad (John’s parents). She did some cooking, granny helped her with some knitting, she played, and she got some of the extra one to one time that she thrives on. Unless her feelings about sports day drastically change in the future I have no problem with her not taking part in any again.

Screen time

Katie gets a lot of screen time and that’s something that me and John have both struggled with a bit, especially John. We (people in general, not just us) are always hearing that too much screen time is bad for you, it limits your social skills, it makes you lazy etc. We used to put limits on the amount of screen time we allowed but now we don’t.

One pretty much unanimous piece of advice we’ve been given about supporting Katie as an autistic child is the importance of downtime or time to decompress. We have been told many times that when Katie comes home from school she needs no demands, no pressure, no questions…just time to do what she wants. For her this tends to mean shutting herself in the playroom with her guinea pigs and the laptop.

Sometimes yes Katie watches stuff on the laptop which serves no educational or social purpose. Don’t we all, that’s fine. Everyone needs to switch off and watch crap sometimes. But it’s so much more for her than mindless staring at a screen. She loves horses and she watches YouTube tutorials on how to check their health, how to groom them, how to tack up a horse, riding techniques… anything to do with horses. She has learned loads. The farm where she has her riding lessons is her happy place and she will sit and watch their YouTube video on loop with a smile on her face. She is also interested in animals in general so will also watch videos about caring for puppies and kittens etc.

Roblox is another interest for her and she spends a lot of time online playing that. There are a number of kids from school who video call each other and play together. It’s a much easier social situation for her than imaginary play at break time or face to face interactions. She doesn’t have to worry about body language or making conversation as they are all just playing and talking about the game and they all have a shared interest.

There is always something for people to worry and moan about. At the moment it’s screen time. For my parents’ generation it was probably “you spend too long on the phone.” Before that it was probably “you spend too much time with your head in a book” whereas now reading is encouraged. So I do worry a bit about the amount of screen time Katie has (and Alice and Matthew) but I’m not going to stop it. I also think it would be a bit hypocritical given how much time I spend looking on my phone. As with most people now my phone is my ‘go to’ for pretty much everything. I use it for social media, banking, reading articles, music, emails, arranging social stuff, ordering school lunches, photos, shopping etc. Whether we like it or not we live in an age of technology so as long as we’ve got parental controls in place and the kids aren’t watching inappropriate content that’s just how it is. They’re not about to turn into robots. They still like going to the park and swimming and bouncing on the trampoline and a bunch of other wholesome stuff!

Pregnancy and birth – Alice

After my two miscarriages in 2013 I was pretty sure I was pregnant again at the end of October and took a test with the idea of telling John on his birthday (31st October). It was negative, so that scuppered that plan. I was really surprised because that was my third (I thought) pregnancy in close succession and I was getting pretty familiar with the early symptoms. I was a bit gutted that the test was negative, but it was also John’s 30th and we were going away with friends for the weekend so I figured at least I could drink. And drink I did, and we had a great time, but my period still didn’t come so I did another test when we got home. It was another negative. I was quite upset as I’d just had my second miscarriage and we both wanted to try again for a successful pregnancy, but I seemed to be in some sort of limbo. Not pregnant but with a messed up body that presumably wouldn’t get pregnant very easily if I wasn’t having periods.

A couple of weeks later and I still hadn’t started my period so I did another test and it was finally positive. I told John in a very unromantic way and he was cooking dinner as I marched into the kitchen and stuck the test under his nose with an “I knew it!”

I had the weird pink tinge and a bit of bleeding again, which wasn’t as heavy as the two times before when I’d miscarried but I did go to the doctor who booked a scan for me given my recent history. The scan showed a little blob not even recognizable as a baby yet, with a heart thumping away. The sonographer said I was measuring about 5 weeks pregnant but must be a couple of weeks further along than that given that there was a heartbeat (by my calculations I was 7 weeks). I went away feeling much more optimistic that this one would ‘stick’ as there was a heartbeat. The bleeding didn’t carry on, and we got to the 12 week mark and had that scan – and there she was, looking like an actual baby now with arms and legs wriggling around.

A couple of days after the scan I got a phone call from the hospital. They said my blood test had shown abnormal HCG levels. I can’t remember if they were too high or too low, but they thought it might be a problem because it could mean the baby wouldn’t grow properly and could be too small. They also said the scan and blood work showed a higher than average chance that the baby could have Downes Syndrome. We were given the option to go back to the hospital and have an amniocentesis which could tell us for sure whether this was the case.

We talked about it but we agreed that if it was confirmed that the baby had DS we would still have it and therefore we didn’t need further testing. I did want to know for sure, but not at the risk of losing the baby, and since amniocentesis can increase the risk of miscarriage we said no.

The doctors told us that if there were any growth issues they wouldn’t show until the second half of the pregnancy as all babies developed at a similar rate up until about 20 weeks. After 20 weeks though I was put under consultant care and given more regular scans, partly because of their concerns that she would be small, but also because of my difficult birth and emergency C-section with Katie.

We talked about whether to find out the gender at the 20 week scan and decided not to. John had enjoyed not knowing with Katie, and I wasn’t sure I wanted to have to keep it a secret again! I really didn’t mind if we had a boy or a girl and I knew from having Katie that I should ignore any feelings I might have of what sex it was as my maternal instinct was rubbish in that respect! The 20 week scan was a good experience as luckily she seemed to be growing fine and looked healthy. They checked again for any signs of Downes Syndrome and couldn’t find any.

I was quite pleased with myself at the scan for resisting temptation to find out what we were having, but as time went on I really hated not knowing! John didn’t come with me for all of the follow up scans, and at one of them the sonographer asked did I know what we were having? I had a sudden impulse and said ‘no, can you tell me?’ Another girl! So again, I had to keep it a secret, and I didn’t even tell John I’d found out, but it was so much nicer knowing we were having a girl than thinking ‘it’. And again I did keep it to myself and John didn’t know until we had her. Go me.

Because of how big Katie had been when she was born and because of her dodgy blood sugars, this time round I was tested for gestational diabetes. My test came back on the high side of normal so no further action or testing was suggested.

Part of the discussion with the consultant was whether I would try for a vbac (virginal birth after caesarian) or have a planned C-section this time. She said that there was no reason why I couldn’t have a natural birth. It didn’t reassure me much, as there hadn’t been any reason why I couldn’t have a natural birth with Katie either but I hadn’t managed it. The consultant also said this time they wouldn’t let me be induced because that could be more dangerous after a C-section, so if I got to 40 weeks and hadn’t gone into labour they would do a C-section anyway, but if I went into labour on my own she would suggest I give birth naturally. I really wanted the C-section! I’d tried and failed with natural birth, whereas I’d been there done that with the C-section and knew what it was like. My dates didn’t match up with the hospital and they had my due date as 10th July, whereas I had it a week earlier. I was certain of my dates because of the fact we’d been trying to get pregnant and I could pinpoint Alice’s conception to one of two days, so their version of me getting to 40 weeks was actually my version of getting to 41 weeks. I didn’t want to end up going into labour, trying for a natural birth and then ending up needing another emergency C-section. So I opted for the C-section and it was booked in for 3rd July (39 weeks in their book and 40 weeks in mine).

We were the first ones on the list on the day which was handy since you’re not allowed to eat or drink anything. Not that the emergency C-section with Katie had felt stressful at the time, but a planned C-section was pretty relaxed! Everyone was calm and chatty and it all felt very chilled out. I could feel the doctor tugging a bit, and I knew the moment Alice was born because I suddenly felt a load of pressure released and there she was. John happened to look over the screen just as she was lifted out so he saw straight away and told me we had a girl. She didn’t need any of the extra attention Katie had had, so we had a lovely time holding her and taking photos while I was stitched up.

It was nice having her in the morning because we had all day for cuddles and phoning people, and in the afternoon my mum brought Katie to see her little sister. She gave her a quick cuddle and then was more interested in playing with the buttons on the bed and moving it up and down!

The after effects of the C-section were a lot more painful second time round. I remember going to have a shower and finding the walk from the bed to the bathroom pretty hard going. I had to stop and sit down for a bit before having the shower, sit down after the shower, and when I got back to the bed I was properly shaking. I made use of the painkillers they gave me plus took the morphine when it was offered. It only lasted a couple of days though and then I was fine.

With Katie I’d had dissolvable stitches but the doctor when I had Alice said my scar was a bit untidy so he decided to cut in the same place but use a different type of stitch. I don’t know what it was but the midwife doing the home check up a few days later had to cut them and take them out. She said the wound looked fine but later that day when I had a look one side was coming open. It looked pretty disgusting so I went to the doctor and they put steri strips on it to help it stay closed, and gave me some antibiotics just to be on the safe side. After that it was fine, and when it had healed properly the scar was definitely neater than after I’d had with Katie.

The hospital were going to discharge us after a couple of days but I thought Alice looked slightly twitchy. I remembered when I’d had Katie the midwife said it looked like she was twitching or shivering slightly and that’s why she had called the doctor, as it could be a sign that the blood sugars weren’t right. I mentioned it to the midwife and she said not to worry and Alice was fine, but I asked if they could check her blood sugars before they discharged us. They did (I think just to humour me) and found that they were too low – nowhere near to the extent Katie’s had been, and she didn’t need to go to special care, but they did keep her in for an extra night and got me to top her up with formula after a feed to make sure her sugars stabilised. I had mixed feelings about that one. I was desperate to get home to see Katie again but proud of myself that my maternal instinct was kicking in and I’d done what was right for Alice. We got discharged on a Sunday so we went round to my mum’s as she had been looking after Katie, had a roast dinner and watched the men’s finals at Wimbledon.

Two C-sections, two baby girls, happy days.

We’re moving school!

We got confirmation over half term that Katie has been accepted at the school we applied to, so she will definitely be starting there in September. She will be in a year 5/6 mixed class of 15 kids including her. There are only 47 kids in the entire school, compared to her current school where there are 60 to a year and about 420 in the school.

Even with all the issues at her current school and the fact that I’ve been hoping since we visited the new school that Katie would want to go there and that there would be a vacancy for her, I still had a moment of panic when we got the acceptance through. Have we done the right thing offering her the chance to go to a new school? Has she done the right thing deciding that she wants to move? Are we just making life unnecessarily difficult having Katie in a different school to her brother and sister? Do we ever stop worrying as parents that we’re doing the right thing?!

This was a very fleeting moment of doubt. I think the answer is absolutely yes we have made a good decision, and this is why:

1. Katie has seemed a lot more settled in her current school this term than she was back in January / February when we started thinking about moving her. She has been less resistant to getting ready in the mornings and most of the time she has walked straight into school instead of hanging back with me and desperately thinking of reasons why I might let her have the day off. Most days she comes out of her classroom chatting with a friend and looks pretty happy. So far so good, maybe after a tough couple of years things are getting better for her and we should leave things be.

Or not. Firstly she has only become more relaxed about going to school since she reached the decision she wanted to leave. It’s like she can put up with it better because she knows the end is in sight. Secondly, this kid can mask and she can mask extensively. There are times when she is genuinely OK at school. There are other times when she looks OK but is absolutely not. There are still plenty of days when she comes out of her classroom smiling and looking totally fine but literally the second we’re out the school gates the mask is off and the effort of getting through the day is obvious. She will snap at me, Alice or Matthew just for breathing never mind talking, her tolerance for anything is non existent and in the 5 minutes it takes to get home she’s turned into a different person. She will disappear into the conservatory to hang out with the laptop and her guinea pigs and won’t reappear for a couple of hours unless it’s to yell at someone for being too noisy.

2. Katie makes friends quite easily but finds maintaining relationships difficult. She has a couple of friendships at school so we have considered that maybe we shouldn’t be disrupting them. But I can’t really see it being a problem because her friends at school live within 5 minutes of us and I get on well with their mums. She will still be able to see them outside of school and keep those friendships going. Also one of her friends at school was possibly going to be moving to Scotland this summer but it’s fallen through and she will be staying now. I wondered if this would mean Katie suddenly didn’t want to move schools and would want to stay with her friend, but she still wants to move which is reassuring.

She has also recently become friendly with another girl in her class. She has told her she is autistic, and this other girl told Katie that she has anxiety and is being assessed for ADHD. I’m so glad that Katie is starting to get comfortable telling people that she is autistic because for the most part she still sees it as a negative and doesn’t want people to know. I don’t know this other girl’s parents but again this is a friendship that we can encourage outside of school because they’re local and I can make contact with the parents easily enough.

3. During the 3 weeks Katie had to home school recently because of all the covid cases in her year it just reminded me again how much more settled she is when she’s not in school. She seemed very comfortable learning online and did her work on the lap top with minimal complaining. She got through it quite quickly and to a pretty decent standard – even English, which she doesn’t like and I thought would be an effort to get her to do. It didn’t really match with feedback we’ve had from her class teacher who says that she needs to build up her stamina when it comes to writing and that there are times she just point blank refuses to do the work.

Katie said that it was easier to concentrate at home because it was quieter and she could sit on her own and just get it done and out the way. She also said she much preferred working on a laptop because writing hurts her hand. She still didn’t really enjoy doing the work but just those two things made a big difference to her ability to get on with it.

I know moving to a new school is not the same as home schooling but hopefully being in a class that’s half the size of her current class will help. By default there will be less noise and less crowding. This also reinforced that we need to look into occupational therapy for Katie. From what I’ve read it’s relatively common for autistic children to have OT to help with writing. Maybe she would benefit from access to a laptop for all her classes, maybe she wouldn’t. But I know for sure if I approached this with her current school they wouldn’t even consider it – they’ve pushed back on accommodations that don’t cost them anything never mind a laptop. On occasions where they are using laptops in lessons 1 laptop has to be shared between 4 children, whereas when we went to visit the new school they said that there is one laptop available per child so potentially this could really benefit Katie.

4. When I told Katie’s new school that we had put in an application for her to go there, the email back said ‘oh that is lovely, we will look forward to welcoming you all.’ One small and insignificant sentence but it made me so hopeful. I have felt for so long at the current school that we’re seen as annoying, that Katie is seen as a child with an attitude problem and that I have no choice other than to battle and make a nuisance of myself. I can practically see the eye roll at the other end whenever I press send on an email and my name pops up in their inbox. Whether the new school meant it or not it was just so refreshing to hear.

5. When I phoned the current school to let them know that Katie would be leaving at the end of the year they asked where she would be going so I told them. “Oh yes, that’s much smaller, I expect she’ll be happier there.” Which is true, but that was a total assumption on their part. They didn’t actually ask why we’d decided to move her. They didn’t seem to think it was weird that we’re moving one child and keeping the other two there. They didn’t ask for any feedback and just said that there is a waiting list for the school so now they know Katie is leaving they can offer her space to someone else. Which pretty much sums them up. From speaking with friends and neighbours it seems that children who keep up academically and who don’t have any additional support needs do well there (like Alice, who is very happy there, and presumably like Matthew which is why he will be starting there in September), and children that do need support don’t get it and end up leaving. It’s such a bad system and it’s so unfair on the children. There is a part of me that wants to leave Katie there, kick up a huge stink, make them change their policies, and make it better for all the SEN kids who follow. But I’m not willing to use Katie as the guinea pig for that. I just want to get her out of there and give her what will hopefully be a better experience at a different school because as things are at the moment she’ll have given up before she gets to secondary school.

6. If nothing else, even if her new school ends up being as completely unsupportive and lacking in understanding as her current school, by default it must still be a better environment for her purely on the basis of it’s size. One of my friends asked me if it was a private school (it’s not) because those small class sizes automatically mean the teachers get to know the pupils better and have more time to help them in areas they’re struggling.

So….roll on September when Katie will be at her new school and Matthew will be starting school for the first time. Here’s hoping that Katie has a better school experience than she’s had so far. And here’s hoping that Matthew is able to jump in at the deep end and enjoy a noisy, busy, chaotic school without support in the same way that Alice has been able to. If he’s not, we’ve learnt the hard way not to ask for help and to get him out of there as quickly as possible.

Miscarriage

After having Katie we decided quite quickly to try and have a second baby. John only wanted two children so we thought it made sense to have them close together. As was the case when we were trying for Katie I got pregnant straight away.

As everything had been plain sailing with my first pregnancy it didn’t really occur to me that anything might go wrong. It had been a fleeting thought when I was pregnant with Katie but I’d dismissed it and enjoyed my pregnancy so I assumed it would be the same the second time round. I was only 5 weeks pregnant and had only just done the test when Katie’s 1st birthday came around, but since we had family and friends over we told them then that we were expecting again. A couple of weeks after that I miscarried.

I went to the toilet before bed and noticed ever such a slight pinkish tinge when I wiped. It was just a hint of something and definitely not proper blood so I tried not to worry about it and went to bed. When I got up in the morning there was a bit of blood but not too much. I wasn’t sure what was going on or if it was just spotting, and I didn’t know what I was supposed to do if it was a miscarriage. Do you just bleed and then it’s done? Do you go to hospital? Do you see the GP? I booked a doctors appointment for later that day and went to work. By the time I saw the doctor my bleeding was heavier and she said it sounded like a miscarriage and booked me in for a scan at the hospital for the next day. I went back to work.

The scan the next day confirmed that I had miscarried. I’ve got to be honest, I have always wondered about my reaction to that miscarriage and if it was normal or if I’m just really heartless? I wasn’t that upset. It was more of an inconvenience than anything else. The plan for our family had been going perfectly and suddenly it wasn’t. Surely miscarriage was something that happened to other people? That was about the extent of it for me. It wasn’t a pleasant experience to go to the toilet and flush the blood away as that was basically what would have grown into our baby. But it was such an early miscarriage I didn’t feel a massive attachment to the baby that would have been – it was still quite an abstract image of something we were looking forward to a few months down the line.

As it was John and I both dealt with it pretty easily. Obviously we had to tell the people who knew I was pregnant that I wasn’t anymore and mostly they seemed more upset than I was which I felt a bit weird about. My manager insisted I had a couple of days off work, which I really didn’t need, but I had a nice couple of days sat watching Wimbledon and wondering why I wasn’t feeling as bad as everyone else assumed I was. My feeling was that this was a minor blip and I’d get pregnant again and have baby number two.

I got pregnant again straight away and felt that my bad luck was done and dusted and that this time everything would be fine. However, again I had the same slight tinge on the paper when I wiped and again I then started bleeding. I didn’t go to the doctor this time and I didn’t ask for a scan. I knew I was having a miscarriage. Like the first time, because it was early it didn’t hurt and it was like a heavy period. This time though I felt quite worried. What if having Katie had just been a fluke and I’d never be able to have another baby? What if I just kept miscarrying? What if I never even managed to get pregnant again? Did we try again too soon? And then because I hadn’t seen a doctor I worried because how did I know everything had come out? Could we try again or should we wait?

I am really thankful both miscarriages were early. They didn’t hurt, I didn’t have contractions, and I couldn’t tell the point that I actually lost the foetus. They were just heavy periods with some clotting. I imagine if I’d been even a couple of weeks further along I would have felt very differently about it. If I’d seen a sac or the beginnings of the baby it would have been an awful lot harder. I didn’t really have an emotional attachment to the pregnancies I lost. I’d never seen a heartbeat or felt them move. I like to think that their hearts never started beating in the first place and that’s why I miscarried them. I would hate to think they had started and then stopped, that the foetus had actually ‘died’.

I’m also really thankful that we already had Katie and even if we never had another baby we had her. It’s pretty hard to feel sorry for yourself or dwell on a miscarriage when you’ve got a one year old to look after. She kept me cheerful and I kept her entertained and it definitely wasn’t as bad as it could have been or as bad for me as many other people find it.

But I do wonder what my overall lack of emotion about it says about me as a person. My issue was more that our wish for a second baby seemed to be getting harder and the ideal of us as family of 4 was moving further away, rather than mourning the two babies that weren’t to be. I know a number of people who have had miscarriages and they have all been a lot more upset than I was. It’s not something that I find difficult to think back on and it was quite sad rather than traumatic at the time. I had worked out my due dates and do still remember them (4th February and 23rd April) but I don’t wonder what could have been or think of us as having ‘angel babies’. I don’t think of Alice as our rainbow baby. It was what it was.

Anyway, we tried again, I got pregnant straight away again and third time lucky it stuck. 9 months later, and 2 years and 1 month after having Katie, we had Alice. The miscarriages receded further into the background and we had our family of 4. I’m not trying to minimise the impact of miscarriage and the devastating experience it can be for many people. I count myself very lucky that I miscarried early and went on to have more children.

Sensory observations

In the last year or so Katie’s sensory sensitivities have really come to the fore. When she was younger I don’t think they were very noticeable. I’m not sure if that’s just because we weren’t looking, or if she was masking, or if she used to be able to cope with them more easily when she was younger and life was ‘simpler’ in terms of the number of demands and social interactions she had to deal with in addition to sensory issues. These days she is a lot quicker to get angry about things and she has meltdowns, which started around the age of 6. I used to wonder why she’d never thrown tantrums as a toddler when it was understandable or expected, but did at an age she should ‘know better’.

I understand now that there is a vast difference between tantrums and meltdowns. A tantrum tends to have an end goal in sight and when that’s achieved the tantrum will generally end. A meltdown is involuntary and is a reaction autistic people may have to extreme stress such as sensory overload, changes in routine and inability to communicate effectively. They happen in adults as well as children. They are physically and mentally draining and recovery time is often needed afterwards.

Katie has been amazing and is growing much more self aware in trying to identify her triggers and communicate them to us so that we can work together to try and reduce them. They may change over time, and there are probably some we haven’t found yet. I am also getting much more aware in terms of watching her, keeping an eye on her body language, and trying to notice when things are bothering her and what’s bothering her so that it’s not always down to her to tell me.

Noise – sounds, tone, processing

Katie doesn’t like noise but I find it hard to know what she means by that sometimes as it’s not just related to volume. It’s more when there are a lot of sounds at once or a lot of background noise. She’s never mentioned that noise hurt her ears but she does say it gives her a headache and makes it hard to concentrate. When she uses her fiddle toys at school it’s nearly always because she’s finding things too noisy and is trying to focus herself. She also has very good hearing and is often scared by noises that me or John just can’t hear, which makes it really difficult to reassure her. At night she sleeps with white noise but it still doesn’t block all the other sounds out. We’ve talked about ear defenders or noise cancelling headphones but she is a bit reluctant to try these for now because she doesn’t want to look different, especially at school.

She is also massively sensitive to tone and at home if me or John are getting a bit frustrated she will tell us to stop shouting at her when we haven’t raised our voices. She says most of the teachers at school are horrible and yell at her all the time – I assume this isn’t always the case but any note of irritation in someone’s voice will be perceived by Katie as shouting. We have asked school to be mindful of this and really consider the way they say things to her and the volume they use. Obviously there are also times when they are genuinely shouting, either to get the class’s attention or to tell people off, and Katie finds that very difficult to deal with.

Katie’s processing of sounds is an interesting one too. We’ve had so many times when she’s been scared because she’s heard a noise, and we’ve told her it’s the hot water going through the pipes, or it’s the cat running around downstairs, or whatever it is, and we might as well be talking a foreign language. It just doesn’t register with her and she’s still just as scared as if we’d told her someone is trying to break into the house. We’ve recently come to realise that she needs to process the sound visually as well – she can’t just be told what’s causing it, she needs to see what’s causing it. She explained this to us really well when she was telling us about the singing group she’s part of. She is in the juniors and they are at the front of the group with the seniors behind them. When it’s not their turn to sing they are expected to face the front and not turn round because sometimes they are recorded and their teacher wants them looking tidy and professional. Katie really struggles not to turn round because she said that although she knows the sound behind her is the seniors singing, it still bothers her unless she turns round and sees it’s them. Now we know this we have spoken to her teacher and she isn’t asked to stay facing the front any more, but it’s things like this that it’s so important for us to know and learn about. It’s small accommodations like this that take no effort but make her day to day life so much less stressful. The fewer triggers there are the less likely she is to feel so stressed, and the less likely she is to experience a meltdown.

Last night Alice came out of her bedroom to go to the toilet and her door creaked. Katie freaked out because to her it sounded like a really loud angry bee buzzing. It wasn’t enough for me to tell her it was Alice’s door creaking and that there was no bee inside. She had to go to Alice’s door and see it move and hear it creak at the same time before she felt reassured.

Labels

I know a lot of people are sensitive to clothes labels, and Katie is one of them. This is one of the things that seems to have developed as she’s got older – when she was smaller I could dress her in anything and she never complained. More recently though she has started refusing to wear tights because she said they feel like someone is sticking pins into her legs. I asked her if they had always felt like that or if it was a recent thing, and she said they have always felt like that. It really bothered me because she had worn tights to school most days for 4 years before she started objecting to it. I asked her why she had never said anything before and she said she just thought she had to wear them. Also for her that feeling is ‘normal’ because she’s never known any different, but what a horrible thought that we were unknowingly getting her dressed in clothes that were causing such discomfort because we didn’t know any better and she thought she had no choice. She also has some clothes she won’t wear anymore because the label is in the wrong place (she prefers them at the side not at the back) or doesn’t sit right, and she won’t wear leggings that are too clingy / tight.

Pain

Katie’s pain threshold is all over the place and definitely not what you would expect. Since she was tiny she has always had a huge reaction to falling over or bumping herself. She will trip over and cry as though she’s broken her leg but there’s not a mark on her. If she trips and we’re holding her hand and grab on harder as you do instinctively, she won’t be relieved that she didn’t fall over, she will cry because her hand hurts. She is intimidated by the playground at school because she hates other kids bumping in to her. She can’t really tell the difference between someone knocking into her while they’re running by and someone giving her a shove on purpose. In a way it’s irrelevant because both situations hurt her, but it means she often interprets the other kids’ actions as unkind whether they are or not. Her reaction to pain has also earned her a bit of a reputation as a drama queen. It’s really difficult for her because she’s often hearing “that didn’t hurt” “what are you making a fuss about now” “that hardly touched you”. It’s true the things that hurt her wouldn’t bother a lot of other people but that doesn’t mean she’s exaggerating or that her pain isn’t real.

She hates having her hair brushed because it hurts (beyond the usual complaint that having knots brushed out isn’t nice). She’s always complained that having her toenails cut hurts, but not her fingernails. Before I knew better I used to try and rationalize with her that one couldn’t hurt and not the other, and that actually it doesn’t hurt to have nails cut unless you slip and clip the skin. These days I listen and if she says something hurts it hurts so we either don’t do it or we try and think of a way around it.

On the flip side, last year she had appendicitis and she made so little fuss about it that we nearly missed it and by the time she went into surgery her appendix was gangrenous and had ruptured. All she told us was that she had tummy ache, and she says that multiple times every day so it wasn’t a cause for concern to start off with. Mostly she has tummy ache caused by constant anxiety, and her complaints about it when she had appendicitis were no stronger than her complaints any other day. Also she had been sick in the night so I just thought she had a tummy bug. I didn’t think it was anything more serious until she brought up a bucket full of green bile that stank a hundred times worse than normal sick! And even then when I took her to A&E the doctors weren’t sure if she had appendicitis and wanted to monitor her until the next day because although it was a possibility they thought she would be in more pain – but then they got the results of her blood test back and rushed her straight into surgery! She was an absolute trooper with the stuff you’d expect kids to complain about and she got through the surgery, blood tests, having a cannula put in, and having the drain pulled out of her stomach afterwards with barely a peep. But try and get her to take her painkillers and antibiotics and she kicked off big time. It’s like she’s in reverse – she doesn’t seem to register pain that would really bother most people, but is extra sensitive to things most people would just find slightly uncomfortable.

Not too long ago Katie was deliberately hurting herself. She was scratching her legs as hard as she could, biting herself, digging her nails in to her skin, hitting herself and pulling her hair. She did it hard enough to leave marks and bruises and break the skin. This was definitely in part because of emotional distress and came with a lot of negative self talk about being useless and stupid, hating herself, and deserving to feel pain. I’m not sure if it was also part of her desire for deep pressure tactile input and a way to calm herself down. Either way she has stopped doing it for now.

Temperature regulation

Katie’s body temperature is different from most people and she doesn’t seem to feel the cold. Her school told me off for letting her wear socks when it was snowing and said she should be wearing tights or leggings – I explained that she doesn’t feel the cold and also finds tights and leggings too uncomfortable, and they still told her she had to wear leggings. I told her she didn’t have to and I would take it up with school if they got cross about it but she went in wearing leggings – and got too hot and bothered and had to take them off. She often doesn’t wear a coat and it’s not unusual for her to be walking back from school in a T-shirt in the middle of winter. I shiver just looking at her as she won’t wear pyjamas either so goes to bed in just her knickers with a tiny thin bed cover which half the time she ends up throwing off. She likes pressure so we’ve tried a weighted blanket for when she’s feeling stressed, and she likes it but she can’t keep it on longer than about 5 minutes because it makes her too hot.

Eye contact

I guess eye contact is a ‘classic’ sign of autism and Katie certainly finds making eye contact difficult. Again she’s developed pretty good masking strategies and unless you’re really watching her you wouldn’t notice how uncomfortable it makes her. Instead of making eye contact she will look at someone’s forehead or just to the side of them. The only time it’s really obvious is if someone is specifically telling her to look at them because she just can’t do it. I remember watching her in a swimming lesson once and her teacher was trying to explain something to her and kept saying ‘Katie look at me’ and Katie was too far gone to even pretend at that point, she was turning her head well away from her and looking at the wall instead.

At school she finds it very hard to have too much input, so if she is listening to the teacher she tends to be looking at the floor or have her head in her hands rather than looking up at the board. This has got her in to a fair amount of trouble in the past and she has come home upset because she’s been told off for not concentrating because she’s not looking where the teachers think she should be looking. It’s been really frustrating how slow her school have been to understand this. I’ve had to literally spell it out to them – you can have her looking at the board and you’ll think she’s listening but she won’t have a clue what you’re saying because she’ll just be trying not to flip out, or you can let her look down and she’ll actually hear you and take in what you’re saying.

Balance

Katie’s balance is also quite off kilter. She’s always been incredibly cautious and was very still as a baby. I could easily leave her on a sofa safe in the knowledge that she wouldn’t roll or crawl off it – if I put her down and went off for 5 minutes she’d be in exactly the same place when I came back. She was late to walk (16 months, so late but not cause for concern) and never did the half running / half drunk falling over style walk that most babies do in the beginning. She was always slow and steady, one foot in front of the other, a very solid plod. She very rarely fell over. She would be on one of those tiny kiddy slides that are barely off the floor, with her feet already practically touching the bottom, and would sit there for ages trying to summon up the courage to slide down. So many adults want to pick kids up and throw them in the air or dangle them upside down, and Katie hated it. She would see other kids enjoying it and laughing their heads off and would want to do it too but as soon as she was lifted up she’d freeze and go stiff.

She’s always had difficulty going backwards e.g. to get her hair wet in the bath. I usually still tip water over her head for her or she has a shower. In her swimming lessons she is slow to progress through the classes because she can do everything she’s asked on her front – she can float, swim, go underwater etc – but she can’t do it on her back. There’s something about that motion she just really struggles with. It looks like she’s not trying because she barely moves from upright, but she really is trying hard. She also finds escalators difficult, especially going down. She can’t just walk on to them, she has to stop and gear herself up for it.

Eating and drinking

Food is becoming more of a sensory issue as she gets older. As a baby weaning her was great fun – she ate anything that was put in front of her with lots of enthusiastic yum yum noises, and she carried on eating anything and everything until she was 7. Then seemingly out the blue (although presumably something happened that we never got to the bottom of) she just stopped eating for about a month. She would have a bite of a sandwich each day and that was about it. Once she started eating again (and as with when she stopped, I don’t know why she started again) she was much more particular about what she would and wouldn’t eat. Fruit is now pretty much a no go. She will eat dried mango and sometimes raspberries or apple but nothing else. She stopped eating chunks of meat, so if we have a roast dinner she won’t eat her meat anymore and she picks the chicken out if we have a stir fry or something along those lines. She is much more sensitive to the colour and texture of food than she used to be. She can also be obsessive about sell by dates so if she thinks something is too close to its best before or use by date she won’t eat it. Again, she has to see – if we just tell her something is in date that’s not enough, she will want to go and look on the packet and see for herself.

These days Katie prefers to eat by herself. She sometimes eats breakfast at the table with us, and usually on a Sunday she eats with us, but it’s her choice so she eats with us when she’s comfortable to do that and not when she isn’t. Most dinner times she will shut herself in the conservatory and eat by herself. She doesn’t want to sit and make conversation round the table, and I assume she’s less willing to do this at dinner because she’s had enough of socializing and being around people at school. She doesn’t like listening to chewing, breathing, knives and forks scraping etc.

Katie isn’t very in touch with her body. She doesn’t drink anywhere near enough and needs constant reminding. When I say reminding I mean putting a cup literally in her hand and asking her to drink something while you watch her do it, otherwise she will put it straight back down and forget. She also has a bladder of steel and can go pretty much all day without a wee. I’m not sure how effectively she can tell whether she’s hungry or not either. When she was little everyone used to comment on her appetite because she would just eat and eat without stopping. She never seemed full, but she didn’t used to ask for food very often either. It was more a case of if it was there she would just keep eating it. These days she is more likely to comment that she’s full, but often it’s because she’s eaten so much she feels completely stuffed rather than she’s just had enough.

I know most people have some sensory issues to some degree and I guess that’s partly where the phrase “we’re all somewhere on the spectrum” comes from, but I don’t think that phrase is accurate and it undermines the experience of autistic people. I will occasionally find a label in my clothes a bit scratchy, and I feel irritated if there is too much background noise or too many people talking at once and I can’t hear properly. But it doesn’t affect me on a daily basis and I’m not constantly challenged just to keep on an even keel and avoid getting overwhelmed. I don’t experience pain or discomfort every day and I’m not living in a world that isn’t designed with me in mind. I don’t understand most of Katie’s sensory issues and they mostly wouldn’t even occur to me if I wasn’t watching her or she wasn’t telling me about them.

I would really like for her to have an assessment and/or some sessions with an occupational therapist because at the moment we’re just taking a guess at the things we can do to help. We don’t have knowledge of proven strategies. One thing we have found is that when she’s upset pressure helps calm her down, which is why she has a weighted blanket but as mentioned it can be limited in its usefulness because she gets too hot really quickly. She also has a sensory sheet which she sometimes uses to ‘fight with’ – she will get underneath it and push it and stretch it out as much as possible. Sometimes she’ll ask me to put her swimming hat on for her because she likes the pressure round her head. Other times she’ll ask me to squeeze her wrists or she’ll push her feet against me as hard as she can. Sometimes it helps, sometimes it doesn’t. I’m also sure there are other sensory triggers that we haven’t identified yet that maybe an OT would pick up on since they know what they’re looking for. We’ve been told in our area that children can access OT if they have an EHCP (Katie doesn’t) or through a GP referral. Our GP put in a referral to CAMHS and they closed the case and said Katie didn’t meet their criteria. Our other option is to pay for sessions privately, which I guess we will need to do. In the meantime it’s a case of listening, learning and adapting.

School enquiry

A few weeks ago I sent an enquiry to two schools in our area, both of which have good reputations and are much smaller schools than Katie’s current one. I outlined that we were struggling to get accommodations put in place for Katie at her current school, listed what those accommodations were, and asked each school firstly if they would be able to support them and secondly if they had any spaces available. We figured if they said no to either question we wouldn’t take the enquiry any further, but if they said yes it might be worth looking into moving schools.

School number one was our preferred choice, mainly because we had direct feedback from a friend who also has an autistic child who had been similarly unsupported at Katie’s current school. They ended up moving him to school number one where he was much happier. The school replied to say yes they could make adjustments for Katie and yes they had spaces. They suggested we book a visit so that we could see if they were a good match for Katie. I went by myself and then took Katie with me for a second visit. The headteacher took the time to come and meet us both times, and when Katie came with me she also asked to meet the person who would be her teacher. He came and spoke to her and answered all her questions, which she had written down and he went through them one by one. He spoke to her not over her head to me. Bear in mind Katie does not have an EHCP and any school she moves to would not get additional funding for her being there, so I appreciated them still making an effort with us.

School number two was one we were considering because it had an outstanding Ofsted rating including for their SEN provision, was a similar size to school number one (ie much smaller than current school) and was just down the road from us so logistically would be a lot easier than school 1. They sent me a reply which immediately got my back up. It was long winded, passive aggressive, gave advice that wasn’t requested, and didn’t answer the actual questions I had asked.

The problem is I’ve been made to feel like such a nuisance parent by current school and by organisations who are supposed to offer support but don’t (*cough* CAMHS *cough*) that I really question my judgement sometimes and wonder if I just moan about too much or expect too much from others. But the more I read the reply from school 2 the more angry I get at the condescending tone and the assumption that we’ve done nothing to help Katie up to this point. Here are some of the gems from their reply to me:

I am sorry to hear that you are unhappy with the provision for your daughter at her current primary school. You do not mention which one this is.” I deliberately didn’t mention which school she’s at now because I didn’t think it was relevant or appropriate at this stage when I’m just making an enquiry that may not go anywhere.

“This has been a very difficult year for all our children and especially our children on the autism spectrum. On top of that, the usual autism advisory teacher support has been temporarily unavailable to schools as there has been a change of staff in the advisory team.” This has been a difficult year for everyone. It doesn’t excuse any school not making necessary accommodations for any SEN child.

Usually, after diagnosis, an autism advisory teacher would visit school to meet with pupil, staff and parents to look at how best to support the child and if there is anything else the school can add to the provision, but sadly this hasn’t happened due to a mix of staff changes, team vacancies and lockdowns. However, all should be returning to normal.” I didn’t ask for information on the autism advisory team and I am familiar with their process. They may not be able to visit schools directly at the moment but they can still advise parents and teachers via zoom calls etc. I have been in contact with the advisory team since Katie’s diagnosis and they have been really helpful in making suggestions to her school – however they work in an advisory capacity (the clue’s in the title!) and don’t have the power to ensure their advice is actually implemented. They confirmed to me that what we were asking for Katie was totally reasonable and have spoken to her school with us and independently to make suggestions, which have mostly been ignored.

The social difficulties you describe are very much the type of difficulties one would expect a child on the autism spectrum to experience.” No shit. That’ll be why she’s got a diagnosis then. I would have hoped someone working as a SENCO would know that the autistic community overwhelmingly prefers identity first language over person first language, i.e. autistic child not child on the autism spectrum, and to update their terminology accordingly.

They will sadly happen at other schools too, until your daughter is able to learn and develop the skills that she needs to overcome these difficulties.” Of course they will, that’s why it’s so important to find her a school that supports her in managing her difficulties. She’s 8 years old, she’s not going to just magically be able to do it herself.

Getting a diagnosis doesn’t cure this and moving schools will also not be a magic wand.” I’m not asking for a cure and I’m not stupid enough to think we can just wave a magic wand, but thanks for making me feel about 2 inches tall there. However, I would like to find a school we can have an open dialogue with and work collaboratively with to help Katie to thrive instead of enduring her time there, and I really hope I’m not naïve in expecting that should be possible.

I would advise against moving a child in year 4 unless it is a last resort, as it is even harder to establish new friendships where they are already secure and where children live some distance away.” I didn’t ask for your advice or opinion on that but thanks anyway. This is a last resort, we’re not just looking at moving Katie on a whim.

I would advise in the first instance that you contact your current school and ask for a meeting with the SENco (Special Needs Coordinator) so that you can discuss your concerns and come up with a plan together.” I LOVE the fact that you think I have an autistic child but don’t know what SENco stands for. Plus, are you kidding me? I’ve been in constant contact with our current school for approaching two academic years now, and particularly in the months since Katie’s diagnosis. My concerns aren’t being listened to and attempts to come up with a plan are not productive.

I would perhaps ask if they can arrange for a visit from the new ASD Advisory teacher to visit and seek her advice on next steps.” We’ve already done that and she is lovely but the SENCO at Katie’s current school is not. Thanks for the assumption there that we haven’t bothered to try and help Katie yet.

If you are however fixed on applying for a place at *school no2*, then you must go via the *county* Admissions panel. You can find details of this on their website.” I’m not at all fixed on applying for a place, it was just an enquiry. You’ve sent me a reply that belittles me as a parent, makes assumptions, and gives advice that wasn’t requested or wanted, but you haven’t actually answered the two very simple questions that were asked, namely whether you could support Katie and whether you have a vacancy.

I sent a reply back to school number 2 where I was sickly sweet and thanked them for their advice and assured them we had already taken all the steps they’d listed. I asked if they could answer my original questions. They didn’t reply.

I’m really glad we emailed both schools because it reinforced our thinking that school number one was informative and co-operative and genuinely seemed to want to help. School number two’s oh so charming passive aggressive response was very similar to the tone of Katie’s current school and put me right off them. I suppose that’s what they wanted. They can’t outright say they don’t want SEN kids at their school but they can be awkward and unhelpful enough to put parents off.

Katie already struggles to feel that she fits in and the last thing I want is for her to be in a school that amplifies this feeling instead of reducing it. I don’t expect any school to wave a magic wand and I don’t want a cure for her as suggested in school number two’s reply. I just want her to be able to be comfortable in a school setting without her or me feeling we’re being a nuisance. It’s no good if she’s only supported at home or only supported at school, it needs to be a collaborative effort and it’s honestly quite depressing that mainstream schools that are willing or able to do this are potentially the exception rather than the rule.

Chalk and cheese

This week has been just me and the girls at home together due to them having to isolate for 10 days after positive covid cases in their school bubbles. They are the only ones who have to isolate unless either of them get covid symptoms and then we would all have to stay home, but for now John has still been going to work and Matthew has been at preschool. I can’t remember when we last had so much time just me, Katie and Alice. I’m always commenting what complete opposites the girls are but they have really shown it this week.

They are both being set work by their teachers and have a combination of online lessons and worksheets to do. Katie prefers to do little chunks at a time spread out with lots of breaks. She’ll have an online teams call with her class and then take some downtime before getting on with the work that was set on the call. Her work ends up taking her most of the day by the time it’s all done. Alice gets up and wants to crack on with everything. She is usually finished by lunchtime and has the afternoon to do whatever else she wants.

Katie is very particular about what she likes and doesn’t like. At school she hates writing and it’s not unknown for her to just point blank refuse to do it. At home she’s been able to use a laptop to do her English work and she’s actually been pretty amenable to it. Also because she likes animals, especially horses, she’s incorporated something about animals into all her English work which has made her happier to do it. Having said that, earlier this week she still refused to dial in and join one of her online lessons. I kind of have mixed feelings about how she refuses to do things she’s not interested in. I half really admire the fact she’s got the balls to turn round to someone in authority and say no. I also can’t understand it because not in a million years would I have done that at school or to my parents. There were plenty of subjects I didn’t really like but I always did the work because I was told to so that was it. I guess I’m a bit of a sheep! Katie also has no qualms at all about handing work in that she knows she could have put more effort in to or that has mistakes in – her view is she’s been asked to do it so she’s done it and the standard doesn’t really matter, or that she didn’t want to do it and it was boring and pointless as far as she was concerned so why should she bother.

Alice likes to start the day off with the work that she least wants to do so she gets it done and out the way. She’s only in year 2 so her teachers aren’t even asking them to submit what they’re doing at home, although they can if they want to. If she makes a mistake she will redo it until she gets it right. She doesn’t like to hand anything in unless she knows it’s perfect.

Katie has been in her element at home without constant face to face interactions. She shuts herself in the conservatory to do her school work but then she’s been staying in there pretty much for the rest of the day playing games online with other kids from her class. She has spoken to them more this week than she does at school. She’s suggesting group calls, getting everyone together, chatting non stop. It’s a massive contrast to when she’s at school and she sticks mainly to a couple of friends or feels the need to retreat and be on her own.

Alice is the opposite and is much happier face to face. When she’s at school she goes skipping in with a bucket load of confidence, but when she’s on her class zoom calls she either just listens without talking or she talks really quietly and comes across as shy. She gets bored at home with no one else to talk to apart from me and Katie (really just me since Katie shuts herself away most of the day, and I’m trying to get my own work done along with home schooling so I’m not the best company). She was so excited today because Matthew doesn’t go to preschool on a Thursday so she had him to play with! She is already planning for when her isolation period is over and talking about who she wants over for tea and who she is going to play with when they’re back at school.

It’s not just their responses to isolation and home schooling that are different, it’s pretty much everything about them. Katie loves animals and Alice is either scared of them (dogs) or pretty indifferent. Katie is practical and likes a project whereas Alice is all about imaginary games. Alice is miss active who loves gymnastics and swings upside down off anything she can. Katie has balance issues, doesn’t like PE and says gymnastics is stupid. I could keep going with this, it’s a long list.

These two have been polar opposites from the get go. I love how two children with the same parents who are being brought up in the same environment and have many of the same experiences can be so completely different. There’s only so much influence parents can have and the more these girls grow the more they go their own separate ways. Nature is definitely winning over nurture in their case.

You’ve got this

There is a common theme doing the rounds on my social media pages these days of “We’ve got this” or “You’ve got this.” It picked up momentum in the third lockdown given that a lot of people were struggling. In one sense it’s comforting and gives a sense of we’re all in this together. But on the other hand, yes we’ve got this but at what cost?

I definitely did find the third lockdown challenging. It was the hardest of the three for me. It was during this time that Katie especially struggled. Her anxiety was worse than usual and she started self harming, and we really experienced the bleak end of a system that is clearly struggling to manage its load. The agencies we turned to for help were unable or unwilling to do anything useful. Instead the Emotional Health Academy told us to contact CAMHS, and CAMHS told us to contact the Emotional Health Academy. The GP put in an urgent referral to CAMHS, who promptly said Katie didn’t meet their criteria and closed the case. How can an 8 year old who is self harming and saying she should be dead not meet their criteria?! The Emotional Health Academy took a month to get back to us and their advice was to go on a parenting course and read a book. That stung. Absolutely we need to do parenting courses and autism courses, and that will be ongoing, but we had already done several at that point and we needed help for Katie specifically. They said they would contact us to follow up and see how Katie was getting on but they didn’t. They have since written to us to say they are closing Katie’s file and that we are still on their waiting list for their parenting course. We were (and are) still in an ongoing battle to get her school to provide the accommodations she needs to stop her getting overwhelmed on a daily basis. It’s a never ending uphill marathon that shouldn’t be so difficult. She deserves better. We deserve better. I spent most of that lockdown feeling totally helpless and desperate for some guidance and someone to lean on.

It was so hard for me and John to get any time together to talk things through. During the day we were working, or the kids were around, and evenings are non existent. Whichever of us was doing bedtime would spend hours with Katie trying to reassure her, make her feel safe, listening to her worries, trying to help her switch off and get to sleep. And then we would fall in to bed to get up and go again the next day.

I never felt so lonely as in that lockdown. We’re so lucky we have phones, video calls, social media etc as ways to stay in touch but week after week of these forms of communication rather than face to face is draining. By the time I was done with the work teams calls, the extra curricular zooms for the kids, the phone calls to school, the council, SENDIASS, CAMHS, the GP, the Emotional Health Academy, looking into private therapies because we were making no progress with the above, I didn’t have the capacity to call the people that actually mattered. I so wanted to talk to family and friends, but I couldn’t bring myself to pick up the phone again or get on yet another screen. There is no replacement for an impromptu catch up with a friend in the school playground or a hug from someone. It felt like conversations were getting harder as more time went on and no one had any news to share. No one was doing anything, no one was going anywhere, people were just existing. Even without covid a lot of people close to us have been going through their own personal difficulties and I didn’t feel comfortable adding my load.

Add covid on top of that, and even if no one had any bigger personal issues, lockdown 3 was still nearly 3 months of balancing home schooling, work and general life admin for most parents without their usual support networks. It was a case of head down and make it through each day. It was really difficult to look up and look around to see who was keeping their head above water, who was frantically splashing to stay afloat, and who was quietly drowning.

So yes during lockdown 3 I guess I found that “we’ve got this.” We avoided covid and we got through the lockdown just about in one piece, albeit slightly fragile. Life has certainly got easier now that things are easing up again and we’ve been allowed to start seeing friends and family outside. Katie and Alice have benefitted from their extra curricular activities starting up again. Katie lives for her riding lessons and Alice absolutely loves gymnastics. They also both do swimming and singing lessons.

There have also been some positives and things to be proud of for me personally during this time. During lockdown 2 and 3 I made a big effort to lose some weight. I pretty much ate my way through the first lockdown and having gone into it already bigger than I should have been, I came out of it with an extra stone on top. I’ve now lost 2st 10lbs and am thinner than I have been in the last 10 years. I’ve never stuck at healthy eating for this long and I’ve never lost this much weight before. At the moment I’m certainly motivated to keep going with it and hopefully I can lose a bit more and then maintain a healthy weight. I’m not sure how I’ve managed to get myself in the right head space to do this but I’m definitely pleased that I have.

I’ve also been seconded at work and am now in a different team. I was moved in November and started getting to grips with my new role in December, but then ended up being furloughed in January and February with lockdown 3. Once I came off furlough it’s been a real fast learning curve but I’ve got myself up and running to be delivering virtual workshops into secondary schools and have had some really good feedback from them. It’s been a challenge learning a totally new role and new processes alongside everything that’s been happening personally but I think I’ve done it well.

So from that point of view yes I’ve absolutely got this. Not only have we got through the lockdowns just about in one piece, but I’ve also achieved a big positive professionally and have made big inroads into losing the weight I’ve been yo-yoing up and down with for the last decade. I’ve gone from a size 14/16 to a 12.

As of tomorrow (17th May) the UK is easing restrictions even further and we will be allowed in each other’s houses, so in theory life is about to get even closer to some sort of normality. But not for us. Covid suddenly seems closer than it did through the peak as it’s suddenly spreading through the girls’ school. There have been positive cases in both their bubbles so they are both at home isolating for 10 days. They will both be off school next week and then Katie can go back on 24th and Alice on 25th. We’re back to home schooling and trying to juggle two different sets of school work with me trying to keep up with my own work. No extra curriculars, no seeing people, no leaving the house. It’s hardly the end of the world but it does feel like quite a set back. Katie is gutted to be missing her riding lessons. Alice is fine at the moment but she’s little miss sociable and will be bored and grumpy by the end of it. We’re actually really lucky that this is the first time through all of this that any of the kids have had to isolate because of being in contact with a positive case, but it is quite nerve wracking having to sit it out and watch for symptoms.

Being in our 30s John and I haven’t been fully vaccinated yet. I had my first jab yesterday (yay!) and John has his on Friday. We don’t have dates for the second jabs yet. I know the chances are that we’d be fine if we caught Covid, but that doesn’t mean I want to try it! John was asthmatic as a child and when all this first started he was put on the shielding list, but then told he didn’t need to shield after all so the messaging there isn’t too clear. Matthew also has asthma and has been hospitalised twice for breathing difficulties in the past. He is still under consultant care and takes inhalers twice a day and pills once a day. His consultant has been reassuring and said given that covid presents so differently in children she doesn’t think he’s at any greater risk than any other child, which is great. I’d still rather not find out though!

So, a lot of the time I feel I shouldn’t moan. We really are lucky in the grand scheme of things. But I have a twitch in my left eye that won’t go away and is seriously annoying. I have a lump in my throat that the GP thinks is silent reflux. It doesn’t hurt, it’s not really a problem, it’s just there. All the time. I feel breathless a lot. I’m the first to admit I don’t do anywhere near enough exercise but this isn’t breathlessness from walking or going up the stairs. It’s sitting down or lying in bed but feeling like I need to take a really deep breath and I can’t get enough air in. I’ve had an upset tummy on and off for the last few weeks. I have an itchy dry patch of skin on my stomach which again has been there for a few weeks now. I have a long term bad habit of picking my lips, which I had pretty much conquered, but have started doing that again with a vengeance. My lips bleed and are sore (one good thing about having to wear face masks, people can’t see!). I find it really hard to concentrate on work. I’m not as productive as I should be and then wake up in the middle of the night worrying about it. I’ve always been a headachy person and they’re not going anywhere any time soon. I have a headache most days. None of these are massive issues, but I would guess a collective physical result of emotions without the outlet they would have in normal life.

Yes I’ve got this. Yes my head is above water and I will keep swimming because there are still a lot of positives in life. But it would be nice to know when we’re going to reach dry land again and be able to take a break.