I would like to have the time to write more often and something more comprehensive than this, but life admin and especially the admin involved with trying to get anything sorted for Katie is monumental at the moment. We are making baby steps but still have a long way to go, as ultimately her mental health has been plummeting for several months now and we are also still in limbo when it comes to a secondary school placement for September.
Everything revolves around the unholy trinity. The three P’s of processes, paperwork and phone calls. And people who don’t pass information on or call you back when they’re supposed to.
I’ve been trying to get hold of the secondary school the LA named since early March when they finalised her EHCP. I’ve dutifully phoned at the times I’ve been given and then told that the SENCO isn’t available. I’ve left my number for her. I’ve left my number with the main office. I’ve emailed. I’m yet to actually speak to anyone.
The SEN school we would like Katie to go to (and requested that the LA name on the EHCP) came and did a home visit with us, and then also invited Katie to go and view the school. They have told me that they think they can meet Katie’s needs and will give her a place if the LA signs off on it. I have no words to describe how much I hate our shitty SEN processes and how powerless they make parents. We want Katie to go to the school. The school is happy to take her. Job done. Except not job done because she still can’t go there unless some random person at the LA who has never met Katie decides to give it the green light, which I don’t hold out much hope for as they’ve done nothing but delay things and refuse help since we first asked for it.
I have submitted my paperwork to the tribunal to challenge the completely useless EHCP that the completely useless muppets at the LA wrote for Katie. It took me forever because there was so much from the assessment reports that they missed out and I challenged pretty much the whole EHCP. It also took multiple phone calls, promises of someone calling back, and several weeks to get hold of a mediation certificate. I only ended up getting one because on about the sixth attempt when I was told no one was available I said I’d sit on hold until someone was free because otherwise they were going to make me miss my appeal deadline.
The LA have agreed to fund Katie for 6 weeks of a horse therapy programme, which is great but also creates paperwork. More forms to fill in for the LA who said we had to set up a new bank account which can’t be used for anything else apart from the lump sum they’re putting in for the therapy, and forms to fill in for the stables.
A referral has gone through for Katie to have an initial session with the Mental Health Support Team specifically for her emetophobia. It’s for CBT which seems to be the only thing on offer even though people keep telling me CBT isn’t usually effective for autistic people, but we’ll give it a go in the hope that it does help, because the sick phobia is ruling everything at the moment. More paperwork.
The EBSA team made some suggestions to help Katie at Christmas, then ignored her for 3 months and didn’t check in again until Easter and seemed surprised that Katie still wasn’t in school and her attendance had actually got worse not better. Cue a sudden flurry of activity and a promise to bring in Alan the new team member to see what he could do. Alan deserves a blog post of his own and it’s on my to do list, but so far he’s spent several hours making appointments to see me, spending time talking to me, and I’m still not quite sure what he’s meant to be doing to help because actually I just keep having to take time out of work to see him and then nothing happens. At least half of the questions he’s asked me he should have already had the answers to as it was information I’d already spent time going through with two of his colleagues.
We were asked to attend a meeting between Katie’s current school (that she hasn’t been to since February), her new school (that we won’t be sending her to and are appealing against), someone from the LA (but they declined to attend), and the autism advisory team at the council. It was set for a date I was already scheduled to be doing a workshop to 200 year 12 students at one of our schools so I asked if it could be rearranged and was told it absolutely had to be this date, so I had to bail on work and arrange for a colleague to cover it. Only to find when we tried to join the online meeting that there was no one there….phoned school, no answer…phoned autism team, was told I couldn’t be put through to them as they all work offsite even though I phoned the number that’s given for them on the council website…tried the link several times and it still wouldn’t let us in…eventually gave up and went to work. It turned out we’d been sent the wrong link. Give me strength.
Hopefully at some point we’ll have a hearing date for the EHCP appeal, although I guess that will create a whole load more admin as well. I have so many thoughts constantly going round in my head and no time to get them out!
Well the time has finally arrived! 15 months of asking, arguing, researching and stressing, and we have a finalised EHCP in place for Katie.
It’s not worth the paper it’s written on. All it’s doing at this point is rubbing salt into very open wounds and demonstrating that even with an Ed Psych report, 2 Occupational Therapy reports, 2 autism advisory reports and a CAMHS report the LA is still not listening.
The EHCP doesn’t reflect Katie’s situation. There is no mention of the fact that she can’t enter the classroom and sits on her own in the staff room. There is no mention of the fact that the EBSA (emotional based school avoidance) team has provided her with a robot so she can learn without being in the classroom. There is no mention that her timetable has been reduced even further.
There is less budget allocated in the EHCP to supporting Katie than what her current school is/was already spending on her before.
Half of the ‘desired outcomes’ sections have been left blank.
The accommodations written into the EHCP are so waffly it barely makes any sense. It’s not enforceable in any way because nothing is specified e.g. she can have access to a quiet area but no information on who else would be using this space, how often she can go there, what she should do or who she should communicate with if she needs to use it etc.
There are ‘get out of jail’ phrases all over the report which means school staff can basically decide not to implement the support Katie needs. It talks about things like reducing demands ‘if necessary’ with no information on what the criteria is for ‘necessary’ or who gets to make these decisions.
Section F isn’t fit for purpose. Loads of support needs identified in the reports have been missed out. I sent the LA four pages of copied and pasted quotes from Katie’s assessments that haven’t been catered for in the EHCP.
The whole document is written as though Katie is just going to magically walk into school and happily sit in a classroom, at which point her support will start. No one is acknowledging the fact that she’s been basically out of school for this academic year with no clear steps in place to help her feel safe or develop secure relationships with key staff and no indication that she’s in any fit state to return.
We asked for a specialist setting for secondary school and the LA have named mainstream. No one has any answer when I question how they expect her to manage a mainstream secondary when she has already tried and not been able to cope at two mainstream primaries.
I’ve spoken several times to SENDIAS. I used an independent company to review the EHCP and my feedback on it. I spoke to a friend who works in a specialist school and gets involved in EHCP tribunals as part of her job. All three of them said Katie’s EHCP wasn’t fit for purpose and all the feedback I’d sent back to the LA needed addressing.
And the LA still just went ahead and finalised it anyway and there’s absolutely nothing I can do about it. So now I need to go to another round of mediation and/or tribunal and the wait for a tribunal date is about a year.
The secondary school the LA named said they can meet Katie’s needs but that’s because they’ve been sent the LA’s cruddy version of the EHCP which doesn’t cover half the issues. I sent the school SENDCo my feedback on the EHCP and she said she wanted to talk to me, so I phoned her when she said she’d be available and she didn’t answer. Let’s add that follow up to the to do list.
The LA said they didn’t feel the specialist school we requested was suitable for Katie. It’s a tiny school with maximum class sizes of 6. Tick. It caters for children with high anxiety. Tick. It specialises in children with school avoidance who have had involvement with EBSA teams. Tick. It’s for children who tend to retreat and shut down rather than show aggression in the classroom. Tick. They have a therapy dog that comes into school two days a week. Tick. This school would be perfect for Katie and when I pointed this out to the idiot who signed off on Katie’s EHCP she had no answer.
Trying to get this sorted while having Katie at home all the time is a full time job and it’s really hard to do my actual job properly. Having worked at it for a year and been proud of myself for losing 3.5 stone in 2021, I’ve put a stone of that back on since October because eating my feelings seems like a marginally better option than going and punching certain members of the LA in the face. Having also never struggled with anxiety or depression (apart from a period of PND after Alice was born) I went to the GP in January and got myself prescribed with happy pills (sertraline). It was definitely the right decision because there are a lot less tears and a lot less brain fog going on now, but I’m pretty resentful that a bunch of idiots from the council who have never met me or my child and apparently can’t read or digest information are exerting so much control over my life and making me fat and depressed! (To be fair, I realise that I can and I will change this again, I’m just taking a moment to wallow!)
It would be great if the powers that be could try and keep in mind that there is a child at the centre of all this. It shouldn’t be this hard to get support and it shouldn’t all come down to lack of funding or specialist school places. It definitely shouldn’t come down to people who aren’t competent to do their jobs.
Next steps – phoning Global Mediation to get the appeal process started. Can’t flipping wait.
We had our mediation session with the LA scheduled for yesterday afternoon following their refusal to issue Katie with an EHCP. It wasn’t ideal that it was the first day of the Christmas holidays in our area so Katie’s head teacher wasn’t available and neither was anyone from SENDIAS (As a side note, apart from taking longer than the 5 days they aim for to get back to me SENDIAS was really helpful in terms of reading the notes I’d prepared and giving feedback. It’s another area struggling with lack of funding. In our region there is one person dealing with all the primary school issues and one person dealing with all the secondary school issues and that’s it). But my friend / manager was free for moral support and to take notes and I was half dreading it and half looking forward to actually being able to make our argument face to face with the LA instead of through all their passive aggressive emails and refusals.
The LA emailed a few days ago to say that the panel had reconsidered our case and decided that they would issue an EHCP after all, so the mediation was cancelled. Or in the words of Global Mediation “Case Resolved – LA Conceded”, which sounds good to me!
At the risk of being cynical I’m assuming this is just the start of another fight. The LA says they will write a draft “as soon as reasonably possible” so who knows what that means and presumably I’ll be chasing them up on that. So far the LA haven’t shown themselves to be very good at reading reports or acknowledging relevant information so I’m guessing the draft will be woolly and missing a load of accommodations and we’ll be going backwards and forwards to get a decent EHCP in place. I’ve heard lots of stories of LAs finalising the EHCP even when the parents have refused to sign off on the draft because it’s not right, or of having to go back to tribunal.
BUT at least after a year of wrangling we’ve finally got confirmation that Katie will get an EHCP. One battle done.
She also had her CAMHS assessment on Monday after nearly 2 years of waiting. She wouldn’t look at the psychologist and didn’t say a word the whole time we were there. But at least I’ll finally have a CAMHS report and some paperwork to give to the LA and that’s all they seem to care about. CAMHS said they can offer Katie some CBT and she is a priority but it’s still another 9 month wait for that to start. Our local MP has been fairly vocal about trying to get CAMHS waiting times down and I keep being told it’s the parents who shout the loudest and make a nuisance of themselves that get anywhere, so I contacted her about our experience so far. She’s actually been quite helpful and raised it with the Trust as well as asking if we felt the wait for CAMHS had affected any other areas such as education. So I said yes I think it’s caused delays in getting accommodations in place and hasn’t helped us with trying to get the EHCP and she said if we want her to raise concerns with the council’s Head of Education Services then let her know.
So that’s a fair bit of positive progress over the last week or so, and I hate to be negative but I don’t really feel better about things. At the root of everything we still have a 10 year old who is big time struggling, help that’s been promised but with no clear time line, and a family unit that isn’t functioning very well. Katie is completely burnt out and can’t cope with any demands at all, even picking a coat up off the floor or getting dressed or going to get the other two from school, without either just refusing to do it or a load of negotiation needed. She has all of the attention all of the time and Alice and Matthew just get left to their own devices. I don’t feel that kids should necessarily have equal amounts of everything because it depends on their personalities and needs, but while Katie needs the attention she’s getting it’s not fair on Alice and Matthew either. It’s impossible to balance their needs because Katie just wants quiet and to be left alone (but not actually alone, she wants to be with me or John all the time), and Alice and Matthew want to be running around and playing and doing Christmassy things but Katie can’t manage that. I try and keep them all happy and all that ends up happening is that no one is happy.
When I was pregnant with Katie my mum said to me that her and my step dad thought being a mum would be the making of me. It was a really positive and reassuring thing to hear, and I was quietly confident and agreed with them. I always wanted to have kids and I had a good example to follow in my mum. I love my three so much and it’s really hard that I’m not the mum to them that my mum was to me. I really only have good things to say about my childhood and I don’t think Katie, Alice and Matthew would say the same. I wonder if something happened to me how they would remember me. Grumpy, tired, boring, snappy? Or how they will look back on these days. Katie is desperately unhappy, misunderstood and angry. Alice is scared of her big sister, lacking in self esteem and constantly overlooked. Matthew just seems fairly bemused at the constant drama. I’m slogging my guts out every day and doing my best and it’s not even close to good enough. Reading, researching, asking, demanding, arguing, trying, emailing, phoning, waiting…everything is painfully slow and Katie’s emotional health just gets worse and home life gets harder. I wonder how, when and if things will get better.
The last few weeks have not got any easier, largely thanks to the powers that be at our local authority who have decreed that Katie does not need an EHCP and they won’t be issuing one. So instead of now being in the draft EHCP stage and trying to finalise additional support measures we could put in place for her, we’re no further forward than we were this time last year. I have submitted a request for mediation and been given a date of 21st December.
Katie is now unable to attend school unless she has a parent or a grandparent, i.e. someone she feels safe with, going in the building with her and staying there. She is just in school Tuesday to Friday 9-12 at school’s suggestion. Even with one of us there she refuses to enter the classroom so we sit in the staff room (or in the hall if the staff room is being used) while her teacher pops in and out with work to do. She’s been allocated a robot (she’s called it Bob-bot) which sits in the classroom instead of her and is linked up to the school i-pad so that Katie can see and hear the lessons.
I have mixed feelings about Bob-bot. Katie quite likes it and it definitely helps for now because it’s better for her to be involved in the lessons to some extent than not at all. But it gives her no motivation at all to get back in the classroom, and what she really needs is to be in an environment that doesn’t overwhelm her and set off all her anxieties. A robot doesn’t help with that. It also doesn’t help her to feel safe enough to get into school without someone having to be with her. Us staying at school with her every day is creating so much pressure and it’s not sustainable. Me and John are finding it really hard to juggle our jobs round it, and we’re lucky to have parents who can help us with it but it’s not fair on them either. They have their own lives and don’t need to be spending their retirement sitting for hours at a time in a school staff room.
Apparently to the LA this looks like a child who is well understood by her school and who is having her needs met. I think Katie’s school have tried really hard to support her. I don’t think they understand her. I don’t think she understands herself and I don’t think we as her parents fully understand her. And a child who is only going to school for 3 hours a day, won’t go in the classroom, and won’t be there without a trusted adult who isn’t part of the school staff, is not a child who is having their needs understood or met.
Katie’s OCD and fear of sick have also escalated massively and she’s constantly in full on panic mode. Sod’s law having had literally years of no one having tummy bugs, Alice and Matthew both caught sickness bugs in half term and Matthew was sick again last week. It’s safe to say our accidental exposure therapy has not helped Katie at all. She’s been absolutely terrified and illogical.
Meal times are turning into a battleground. If she thinks Alice or Matthew have got too close to her, touched the same food that she’s eating (like if they’ve put their hand in the cereal box), or breathed too near her, she won’t eat in case she’s got their germs. This is now the case whether they’re actually ill or not. She’s refused to eat anything me or John have prepared because we’ve been close to the other two when they’ve been ill. Sometimes she’ll make herself something instead, but other times she’s too worried about what she might have touched and the fact that soap ‘only’ kills 99.9% of germs so she could still get ill. On one of the days she was in school some kid brushed up against her and that sent her in to full on meltdown mode. She took her hoodie off and put it in the wash as soon as we got home, washed her hands at school and again at home, and then still refused to eat anything because there would be germs on her hands. I really don’t know how to help her with this because there’s no reasoning with her. She gets an idea in her head and you can’t shift it. This kid brushed against her arm, he didn’t even touch her hands. She didn’t want to use a knife and fork because she decided the germs would travel down from her hands down the cutlery and down to her food. She wanted to put plastic gloves on over her hands to feel safe to eat.
During Alice and Matthew’s bugs it was difficult because I wanted to be looking after them but instead everything was revolving around Katie. Thankfully they were star patients (probably because they had no choice!), took themselves off to the toilet to throw up and just sat and took it easy. Whereas Katie was constantly in floods of tears and hyperventilating. She’s now at the point where she won’t actively settle down to go to bed because she’s convinced that she’s going to be sick in the night so she’s scared to go to sleep. She sits and stays awake for as long as possible until she’s basically too tired and just passes out. I just have no idea how to help her with that because I already sit on her bedroom floor with her until she’s asleep and we have a roll out bed now permanently on the floor in our room because she ends up coming in and sleeping on that at some point during every night. In terms of trying to make her feel safer or believing that it’s OK to go to sleep nothing seems to get through to her and there is no empathising or rationalising or reassuring that seems to make any difference. And it gets so frustrating and draining going through the same thing every night.
For the life of me I can’t work out her thought processes because for someone who is so paranoid about other people’s germs and people getting too close to her, she is really unhygienic herself. She’ll be around animals, including mucking out at the stables, and not give it a second thought. She’ll have horses slobbering on her hands and be knee deep in mud and poo and then eat lunch without washing her hands. If she thinks her toothbrush has touched something it shouldn’t or someone has got too close to it she will go days without cleaning her teeth, and doesn’t grasp that that’s creating more germs than the thing she was worried about. Getting her to shower and wash her hair is an absolute mission. She’s managing it about once a fortnight at the moment and that’s only because I’m doing it for her.
Katie is incredibly hard to be around at the moment. The fear of sick dominates every area of life and is causing her massive separation anxiety. She is extremely confrontational, especially with Alice and Matthew and I think she is angry with them for getting sick in the first place. She’s completely irrational and has to have the same conversations multiple times. We’re living an exhausting and depressing Groundhog Day every day.
I’m struggling to be the parent she needs at the moment. It’s increasingly hard to keep myself on an even keel to be able to deal with the never ending and repetitive sick conversations. I’m resentful at the lack of support available, I’m terrified for Katie, I’m worried about the implications of all of this on me doing / keeping my job, I can’t concentrate on anything, I’m sad for all of us that our family life is so difficult for now, I’m craving some peace and quiet and time to myself, I feel isolated.
I’m also trying to remember that if this is hard for me and John it’s nothing compared to how Katie is feeling. It feels harsh to be complaining about the effect this is having on me, but it is having a big effect and that’s my reality at the moment. It’s hard to get a balance between recognising that I need to offload sometimes but making sure not to do it in front of Katie and keep trying to help her.
At the moment this looks like:
Staying with her for social activities and at school
Having friends to us instead of her going to their houses
Reducing demands and expectations
Staying with her while she goes to sleep / being available during the night when she’s scared
As much horse time as possible (horse therapy and afternoons helping out at the stables she goes to for riding lessons) – this is really the only time she seems genuinely happy
Weekly sessions with a play therapist (we found her and are funding it ourselves. Katie has had 4 sessions with her so far, fingers crossed)
Katie found a 6 week programme to help with emetophobia and asked if she could do it. I took it as a massive positive that she’s actively looking for ways to get better so she’s currently on week 2 of that, but she does seem to have hit a bit of a wall and is finding it hard so I’m trying to encourage her not to give up on it.
EBSA (Emotionally Based School Avoidance) team involved at school
She finally (nearly 2 years later) has an assessment with CAMHS booked in December. Not holding my breath on this though as they’ve already told me there will be another wait for any treatment post assessment and they offer CBT which they don’t think will be particularly successful in Katie’s case.
Going to mediation to keep trying to get an EHCP in place
Emailed our local MP who apparently is on a mission to reduce CAMHS waiting times but says “there are routes available for support whilst waiting to which I can direct you.” I sent her a summary of our experience with CAMHS and the other support routes we’ve tried to access and asked for her advice. Let’s see if she comes back with anything useful!
Hopefully one or any of these things will help because we’ve hit breaking point.
We’re in the thick of things at the moment and I’m hoping this is the low point and it gets better from here. On the one hand things have snowballed really quickly, on the other hand it’s been a slow burner over a number of years of battling to access any support.
Katie is currently unable to access school. She doesn’t feel safe and isn’t able to force herself in any more.
She is struggling with things she usually enjoys. She doesn’t want to go to youth group or singing unless she knows me or John are right outside in the car. She was scared to be left with her grandparents yesterday while me and John were at work.
She is regressing in skills we’ve seen her demonstrate and know she has. She is scared to canter at riding and she panics when people come too close to her unexpectedly.
Her fear of sick has escalated massively and she doesn’t want to do anything or go anywhere in case she is sick or someone near her is.
The deadline for her EHCP assessments is today. She hasn’t had an OT assessment because the waiting times are too long. I was told I’d have sight of submissions from other agencies but all I’ve seen is the Ed Psych report. The case worker we’d been assigned has left the local authority and no one told us. Our new case worker hasn’t contacted us or given us any updates. We had a meeting scheduled for 17th October to discuss findings from the assessments and accommodations needed in the EHCP (assuming / hoping she gets one). That meeting has been cancelled. No one has answered my follow ups about the OT / asking to see any paperwork that’s been submitted / whether a decision will still be made this week given the meeting has been cancelled. Almost a year of paperwork, appeals, tribunal, and they’re still taking the piss.
I’ve been back to the GP for signposting anywhere else other than CAMHS as it’s been nearly a year since we had any contact with them and they’ve still never met or spoken to Katie. Waiting to hear from them.
I’ve looked into two private places to try and get Katie some help. One has a waiting time of 30+ weeks. One isn’t taking anyone on because their waiting lists are too long.
We’re currently half way through the school summer holidays and I’m not sure what to make of them so far. My job is term time only so school holidays are me and the kiddies, no summer camps or holiday clubs. Generally I think that’s a good thing as Alice and Matthew would probably enjoy camps well enough but I don’t think Katie would, and especially as they’ve all got older it’s mostly nice to be able to spend time with them over the holidays.
This summer so far we’ve spent time with family and friends, had a week away in Cornwall, and we have another week away coming up. We’ve been to some old favourite places and discovered some new ones too. As there’s been a heatwave in the UK over the last few days we’ve been on the hunt for anywhere free to splash around and definitely found a couple of good spots. So for the most part the holidays are ticking along nicely (although Alice fractured her elbow during a gymnastics class which we could have done without!)
However, it makes me somewhat sad to say I’m struggling a lot with Katie during these holidays. I’ve generally been under the impression for a while now that school is at the root of a lot of her behaviours because it’s such a difficult environment for her. I tend to think back to the first covid lockdown when schools shut and the kids were at home from March to September 2020, and Katie was literally like a different child, so much calmer and more patient. Most school holidays are relatively short and she tends to spend them stressing about going back to school, but I suppose I’ve been a bit optimistic in hoping that the 6 week stretch for the summer might help her relax more than usual.
Instead I feel like I’m constantly walking on egg shells and nothing I say or do is right. She will argue that black is white and red is yellow and night is day. She’s defensive and snappy about every comment even when it’s not directed at her and even when it’s not a criticism. It’s pretty much impossible to have a conversation at the moment. Her sleep has definitely not improved and if anything it’s worse as she’s taking the usual forever to get to sleep but also waking up every night at the moment (rather than just some nights). If she’s asked to do something she’ll ignore the request or argue about it.
I mostly feel in the last couple of years that I’ve learned a lot about autism and it’s improved mine and Katie’s relationship significantly, but these few weeks feel like a backwards step. I’m finding it really hard not to get irritated by her, not to see her as rude and difficult, and honestly I’ve been breathing a sigh of relief on the days that she’s been out riding or with a friend because it’s just easier not to have her around picking fights with everyone and complaining about everything. I know she’s not doing it on purpose, and one of the things I’ve read over and over again is that behaviour is communication, so I know the difficulties we’re having at the moment are related to unmet needs or sensory issues or whatever it might be….but I don’t necessarily have an accurate idea of what they are or the best way to approach them. I know she finds Alice and Matthew difficult to be around all the time because they’re noisy and they want to do different things to her and they interrupt what she’s trying to do. I know she hates having to stop what she’s doing because we’ve got to take Alice to gymnastics or Matthew to a friend’s birthday party or whatever it might be. I know she doesn’t like it when they have friends over. But I don’t have the solution to that and I can’t split myself in pieces for everyone. The difference is that Alice and Matthew seem to understand that sometimes they’re going to have to do things they don’t want to do, but Katie doesn’t. Katie had a 4 day riding camp earlier in the holidays which meant Alice and Matthew had to get up early and do an hour’s round trip each morning, and they did it without complaining. But taking one of the other two to a friend’s house 10 minutes down the road causes an argument with Katie.
Where possible we do as much in the holidays for Katie as we can, like the riding camp or keeping up with her youth group or quiet days at home. But the girls are polar opposites in pretty much every way so where quiet days at home are fine for Katie, Alice can manage one or two and then gets bored stupid. I struggle to find the balance between knowing that Katie has more particular needs than the other two but recognising that sometimes they need to come first too and it can’t just be about Katie all the time. I also struggle with the fact that Katie either doesn’t appreciate or doesn’t understand that we do whatever we can whenever we can to keep things less stressful for her. As an example Matthew has swimming lessons on a Tuesday afternoon which Katie very rarely comes to. She usually either goes to a friend’s house instead or over the holidays John or my mum have taken Matthew swimming and Katie has stayed at home with me. Yesterday was the first Tuesday in ages that she’d had to come to one of Matthew’s swimming lessons and she kicked off about it. We also changed Alice’s gymnastics classes from a Monday to a Wednesday so that Katie didn’t have to come (because John has Wednesday afternoons off work so can be at home with the other two while I take Alice to gymnastics). I’m not expecting Katie to be falling over with gratitude about the fact that we make adjustments for her but I do find it hard to take when on the odd occasion we have to take her along with us she acts like we’ve done it on purpose just to wind her up and it’s a mammoth undertaking just to get her out the door.
Also over the last few weeks Katie has become massively paranoid about her health, which we’ve experienced on and off over the years but not to the extent she’s at now. Her sick phobia has become quite extreme to the point that it’s stopping her doing things she would normally want to do. When we’re in Cornwall she loves one of the theme parks and we have to go there any time we visit. This time she refused to go on half the rides in case they made her sick. There have been multiple car journeys where she’s been in tears in case she’s car sick, or it’s been a battle to get her in the car in the first place because she’s scared. The conversations at bed time about being sick are never ending at the moment (see previous post on bedtimes and sick phobia here). I’m not sure what has triggered this because she’s never been car sick in her life and has barely ever been sick full stop. I’m also not sure of the best way to help her through it because empathising, giving advice on how she can eat sensibly and make sure she’s drinking enough etc, or reassuring her on how unlikely she is to be sick don’t seem to make any difference. So we just go round and round with the same issue constantly rearing it’s head, and I can see that she’s panicking and stressing and I know it’s hard for her but it’s also so frustrating because it’s like groundhog day.
Every day is also relentlessly full of I’ve got a headache or I’ve got a tummy ache or I just don’t feel well, all things which I’ve previously felt are symptoms of school based anxiety but they have got more so over the holidays not less. She’s also gone from not drinking anywhere near enough to freaking out if she doesn’t have a drink with her at all times, so I’m glad that at least she’s drinking more but it’s gone from one extreme to the other. I will speak to the GP about her symptoms but I don’t think she has any illness as such, I still think it’s anxiety related. But again I’m not sure of the best way to support her with that.
Katie’s need to be around me or know where I am is also quite difficult for me at the moment. I love my kids dearly but I appreciate breaks from them as well, whether that’s 10 minutes or a whole day to myself. Alice and Matthew are in bed by 8pm so that’s a bit of evening down time as far as they go, but Katie is up with us all evening. During the day she wants me to let her know if I’m going upstairs / downstairs i.e. a different floor of the house to her, and she will immediately come with me. If she can’t see me even for a minute she’ll be calling for me or come and find me. She wants me to do her bedtime every night and doesn’t want John doing it. She’s started requesting when I’m on the toilet that I leave the door open so she can still see me. I’ve refused to do this and explained that it’s private and offered that she can talk to me outside the door if she wants to, but it’s still causing some problems because she still gets upset about me shutting the door. She doesn’t see herself as a child or appreciate that some things aren’t yet appropriate for her, so for example if I’m watching TV she wants to sit with me and watch too. Sometimes that’s fine but sometimes the content is not OK for her, so then I ask her to watch something on the laptop or her tablet instead or read a book etc. She usually does, but only after a long discussion and/or some anger on her part. The other day I really needed some space so I took a cup of tea out to the garden. John was in the house so Katie wasn’t on her own, but still within 30 seconds of me sitting down she was there next to me and found it very hard to understand when I explained to her that I wouldn’t be long but I just wanted to be on my own while I drank my tea. She seemed really quite hurt by it so then I just felt guilty for wanting some space but I feel like she’s my prison warden at the moment. She’s there with me constantly through the day, I’m with her all evening, she’s getting me up every night, and it’s draining. I love John, I love my mum, my sister, my friends, but I value my own space and time as well and I don’t want to be with any of them 24/7…and I’m not. I love Katie too but I don’t want to be with her 24/7 either….and I am.
The ironic thing is that Katie can’t wait to be an adult because she thinks she’ll be in control. She doesn’t believe me when I point out the things that adults do because they have to, not necessarily because they want to. She has no realisation of the extent to which she is in control of me. It’s exhausting having to constantly negotiate my right to do really basic things like watch TV or go to the toilet on my own or go outside to hang the washing up. I don’t get to go to bed when I want to, I don’t get to regroup, I don’t get to have my own agenda. The bedtime sagas are slowly driving me insane, particularly at the start when Katie goes to say good night to the guinea pigs and checks the doors and windows (because she doesn’t feel safe relying on me or John to lock the house up). She has a really strong compulsion to do the same things every night, check the locks on the guinea pigs’ hutch are straight, put the door handles a certain way, tug on them x amount of times, etc etc. It goes on and on and it’s fine if doing those things make her feel safer or more secure, but it’s the fact that she wants me stood right there with her while she’s doing them all that drives me nuts. If I don’t stay with her she won’t do them and will go straight into meltdown mode. So I stand there gritting my teeth and desperately trying not to let her see how much I hate it and how I want to scream the second she starts with the never ending tugging and tweaking which take long enough on a good night and forever on a bad night.
I know there are professionals out there who would say we’ve gone too far in what we (or I, as I’m the one who is home with the kids more) allow Katie to ‘get away with’ (such as the ones who told me to put a time limit on how long she can have to discuss her worries, after which we should refuse to engage with her especially when it comes to bedtime) and that she needs discipline and consequences. I’m fairly sure that’s what I would have thought before I had Katie. I’m also pretty sure these professionals don’t have autistic kids and if they do I would think their kids are struggling even more than Katie if that’s their approach with them. Discipline and consequences don’t work with Katie. They make her angry, confused and dysregulated. Empathy, feeling heard and accommodations help her and that’s the route I’m following as far as possible (and that doesn’t mean boundaries don’t get implemented, e.g. no watching me on the loo!). But some times for Katie are easier than others, and some times for me are easier than others, and at the moment it feels not easy at all.
Life after our Lake District get away has picked up right where it left off, i.e. hectic! Work is crazy busy with the end of term looming and schools trying to cram events in, and life is crazy busy – again with the end of term looming and the sports days, plays, collections for teachers etc that come with three primary school aged children.
I’ve referenced in passing a couple of times that my request for Katie to have an EHC needs assessment carried out was refused by the LA so I appealed it and it went to tribunal. This process has taken up a massive amount of my time and emotional energy in terms of putting Katie’s case forward. I put the initial application in just after Christmas, so this has been going on alongside daily life over a 6 month period and it’s been horrible.
The system is not set up to support SEN children and their families. It’s designed to intimidate, delay and offer the minimum amount of help possible.
The LA rejected the initial assessment request because “The evidence clearly showed Katie’s level of need is well understood and is being appropriately met by her current school. Katie is achieving well academically and making progress. Therefore the EHC Panel is confident that an EHC assessment is not required at the present time”. I’m not sure what evidence they were looking at there. Presumably if someone’s needs are being appropriately met by their school they wouldn’t dread going in every day, wouldn’t be under CAMHS, and wouldn’t be dysregulated on a regular basis and needing recovery time after school. But what do I know.
I researched quite a bit before deciding to appeal the decision. It was hard work getting the forms together to do the request in the first place and I didn’t want to go through a whole load more paperwork for an appeal if there was no point. I contacted the autism advisors at the council (who ironically have absolutely no input or sway in the council’s decision on whether to carry out an EHC needs assessment even though they often know the child involved), SENDIASS, and SEND Family Instincts and they all said I had a case and should appeal. I’m also on support groups on social media for children who are struggling in school and the general consensus there is that LAs (seemingly across the country not just ours) reject EHC assessment requests as standard in the hope that parents will give up and go away. If a rejection is appealed a lot of the time the LA will concede before the case gets to tribunal, and if it does go to tribunal a ridiculously high proportion of them (something like 96%) go in favour of the child / family.
Why is it standard practice for the LA to reject a request for an EHC needs assessment? That in itself is shameful. No parent is going to go through the process of filling in a multitude of forms and having to highlight what their child is like in their lowest moments for the fun of it. When you’re applying for an EHC assessment it’s because you’ve run out of options and you’re recognising that your child isn’t managing in a mainstream educational setting. The standard practice for the LA should be to act as a sounding board and support system for families, not effectively tell them to go away and stop whining. Why not assume families know what they’re talking about and are asking for help because they need it? Instead they make it as hard as possible and set a load of random thresholds that need to be met while pushing back on parents and assuming they’re making it up.
I submitted the appeal and kept everything crossed that the LA would concede but they didn’t. I received an email from a solicitor in their ‘People Team’ saying she had been instructed by the local authority and all communication had to go through her moving forward. Not necessarily a problem in itself and it wasn’t a nasty email but the whole language around tribunals, judges, solicitors, and being referred to as ‘the appellant’ rather than your name is scary. I don’t have a legal background or any legal knowledge and I wasn’t aware that a solicitor would be involved from the council. I thought I would be arguing my case and someone from education services at the council would be arguing their case. You throw a solicitor into the mix and it gives it a very different feeling. It was intimidating and I felt out of my depth.
The LA’s mean reasons for opposing our appeal were:
They said the occupational therapy report we’d submitted wasn’t relevant because it was carried out in August 2021, before Katie started at her current school.
They felt the driving force behind our application was concern over what would happen when Katie starts secondary school, which they said shouldn’t be considered because she still has a year left of primary school.
They said the fact that Katie’s behaviours and anxieties have improved since she left her old school and moved to her current one showed that her current school is meeting her needs
They cited again that she is meeting or above the academic expectations for her age group.
You get two deadlines with an appeal, one to put your evidence forward and another one a couple of weeks later as the absolute deadline for any additional evidence. I used the second deadline to challenge the LA’s views so I sent my counter arguments as additional evidence, which were:
The OT report was 100% relevant as it highlighted sensory issues and causes for dysregulation which are applicable and need to be taken into consideration in any environment. It also made recommendations to be implemented at school, most of which currently haven’t been.
Concern about secondary school is definitely one of the reasons for wanting an EHCP for Katie but it’s not the only one. She’s struggling in school right now so needs extra measures in place as soon as possible. Also she may not be starting secondary school for another year but it’s only 4 months until we have to make our application for her secondary school so it is a relevant consideration.
Katie’s behaviours and anxieties have definitely improved since moving schools, and we acknowledge and appreciate the support she has at school but that still doesn’t mean it’s enough. She’s managing to tolerate school at the moment rather than hurting herself and saying she can’t imagine ever feeling happy as she was at her old school. That just means she’s unhappy rather than desperately unhappy, it doesn’t mean her needs are being met. Also how can they know her needs are being met unless they do the assessment?!
I couldn’t care less about her academic achievements right now and I’m fed up of them being highlighted constantly as a reason why she doesn’t need any help. EHCPs aren’t just for kids who are falling behind academically, they are also supposed to cover their emotional and social health and that’s what Katie needs one for.
Obviously I said it in a more professional way than that! The LA then submitted their final evidence literally about an hour before the absolute final deadline which meant I couldn’t counter it. They said it was a healthcare issue not an educational one and that CAMHS was dealing with that (great we’ll just hang tight until late 2023 then, which is when CAMHS told us would be the earliest they’ll be able to get round to seeing her), an EHC isn’t required to access OT support and we could go through the GP for that (already tried that and the GP told us it had to go through a CAMHS referral or she had to have an EHCP that highlighted the need for it) and – yet again – that Katie is making progress academically (banging my head against a brick wall with that one).
I was quite worried that not only did the LA not concede rather than go to tribunal, they also came back not once but twice to submit counter arguments against us. I’ve been told so many times (mainly by Katie’s old school but to an extent also her current one, plus prospective schools I’ve spoken to) that Katie is fine, or that they don’t see the behaviours we see, or that it must be a parenting issue not a school issue, or that her needs can be easily accommodated in school, and for the most part I’ve stood my ground because I know Katie better than these people and I know she needs me in her corner. But then with the LA refusing to back down and saying the same sorts of things I felt really defeated. It’s such a battle to get anyone to listen or understand and it does make me feel like I’m an overbearing, over anxious, over protective pain in the arse parent.
We had a month to wait from the final deadline for evidence to be submitted until the date of the hearing. It’s like when you’re little and you’re so desperately excited for Christmas that time goes sooooo slowly, except that instead of excitement to deal with you’ve got dread. A month to think things you don’t want to think about. What if the tribunal sides with the LA and I’m in that tiny percentage that doesn’t win the appeal? What does that say about me as a parent and as Katie’s advocate? What if we lose? We’re out of options, that would be the door to any extra support in school shut. Do we keep Katie in school? Do we home educate? Do we keep pushing her to breaking point? Why didn’t I think to say xyz? It’s too late now and I can’t change it. What the hell is going to happen to her when she gets to secondary school if she doesn’t have an EHCP in place?
We received an outcome from the tribunal on Wednesday. They upheld our appeal and have ordered the council to secure an EHC needs assessment for Katie.
I am so bloody happy I feel like I’ve been walking on air the last couple of days. I’ve heard the expression of having a weight lifted off your shoulders but I’ve never physically felt it until now. I know the assessment could be carried out and they can still say she doesn’t need an EHCP. I know they could issue an EHCP and it could be useless. I know it’s not going to happen tomorrow and we still have a way to go. I know that ultimately this is about Katie and what’s going to benefit her, but….I finally finally finally feel heard and I feel vindicated. The judge in their reasoning of their decision referred back to all the points I’d raised and highlighted them as valid and necessary, in comparison to the LA who they said had provided conflicting evidence and had incorrectly applied the SEND Code of Practice.
My experience of school as a child was positive. I absolutely loved my primary school and most of my time at secondary school and I was sad to leave. If we didn’t have Katie I would probably still be singing the praises of education and mainstream schools because Alice is learning well and is happy at school, and Matthew has settled in well since starting in reception. When everything is going smoothly you can sit back and admire the job the teachers do (which I still do, I think they are amazing), you can sit proudly at parents evenings, you can look forward to “aren’t they adorable” at the school plays and nativities. Having Katie has given me a whole new perspective on the school system and while it’s fine for the kids who are fine, it’s not fit for purpose for the ones who aren’t. It’s understaffed, there isn’t enough training or understanding of how to support these kids, it’s underfunded, it’s reactive rather than proactive, it’s painfully slow, it’s exhausting, it’s parent blaming rather than supportive. It sucks and there are thousands of children and families who are being forced to battle through it who are hidden in plain sight.
A long way to go, but in the meantime: screw you to our local council, go and get my child her EHC needs assessment like you should have done 6 months ago.
In 2010 John and I had a mini break in the Lake District, staying next to a farm in the middle of nowhere. On our last day we went up to ‘Surprise View’ which overlooks Derwentwater, and John asked me to marry him. I’d thought he’d been a bit possessive over the backpack while we were away and it was because each day we’d been out and about he’d had a bottle of champagne, glasses and an engagement ring smuggled in the bag and he’d been trying to pick the right moment! Obviously I said yes, and it summed up a very happy few days away.
We always said we’d go back to the same place for our 10th wedding anniversary, which was last year. We’d booked it all but then because of whichever covid lockdown was in place at the time we couldn’t go in the end (I think the rules last year were that we could meet people outside but not go in each other’s houses, so we couldn’t send the kids to stay with grandparents or have them come and stay at ours). We managed to re-book it for this year so have just had 5 days / 4 nights days back in that same spot in the Lake District.
We big time needed it.
This was the first time in 3 years we’ve had a night away and the first time we’ve ever left the kids for more than 1 night. I was so excited to spend some time just with John, just being us as a couple not mum and dad. It’s next to impossible to spend any time together at the moment. John is working long hours and when he’s around day to day life takes over. It’s not always a bad thing because it’s spending time with the kids or other family and friends, but it’s also the drudge and daily grind that mean days can go by where we’ve barely spoken. Or we do speak but it’s 100% functional. Can you make the lunches while I do bedtime? Did I tell you I need to be in work early so can you do both school runs? Don’t forget to take the cat to the vets. Or we’re tired and by the time we’ve struggled through yet another difficult bedtime with Katie we end up arguing with each other. All the habits I thought we’d never let ourselves slip into yet somehow we have.
There is no phone signal where we stayed, although there was wifi so we did WhatsApp the kids to check in. Other than that we didn’t look at work emails or get sucked back into normal life, we just had those 4 days to switch off. It was like stepping back in time 12 years. It was reassuring to know that we can still have conversations that don’t revolve around Katie, Alice and Matthew. I don’t even know what we talked about and I love that. 4 days of being able to make each other laugh, talk about everything and nothing, or not talk and have comfortable silence. It was a very happy few days and I felt a lot lighter.
I didn’t want to come home and that makes me sad.
I missed the kids and was happy to see them again but I find every day life a bit overwhelming at the moment.
I find the lack of sleep really hard to deal with and can’t see an end in sight to that one. I go to bed later than I’d like to pretty much every night because of Katie’s difficulties with switching off and getting to sleep, and it’s very unusual to have a night without either Katie or Matthew (or both, but it’s usually Katie) waking me up for something. The getting up isn’t necessarily an issue but a lot of nights once they’ve got me up my mind starts racing and it’s really hard to get back to sleep. Nearly 10 years of cruddy nights are taking their toll and Katie has so much anxiety and so many habits and rituals she has to go through that I don’t know where to start with trying to get more sleep.
I know it’s the same for a lot of parents but the amount of life admin is so much sometimes, and it was really nice to escape it for a short period! The never ending emails from school about sports days, permission slips, school trips, cases of headlice or chicken pox or worms, fundraising and requests for volunteers, reminders about where you can and can’t park, non uniform days etc. Remembering to book breakfast club for Katie, ordering school lunches for Matthew, booking after school club for all the kids on a Monday. Remembering to book riding lessons for Katie. Making sure PE kits are being sent in on the right days and homework is getting done and going back to school on the right day. Monthly repeat prescriptions for Matthew’s asthma medication and the cat’s heart medication, booking check ups at the vet, hospital appointments for Matthew’s asthma and allergies, check ups at the dentist, check up at the opticians (Katie is currently about 3 months overdue). Birthday cards and presents to buy, playdates to arrange, after school activities to get the kids to.
There isn’t a day of the week where one of the kids doesn’t have something going on apart from Mondays, but then they’re in after school club because I work later on a Monday. Tuesday Matthew has swimming, Wednesday Alice has gymnastics, Thursday Katie has youth group, Friday the girls do singing, Saturday the girls have swimming, Sunday Katie has riding and then we start again. John suggested we drop something but I don’t know what that would be. I’m the one that makes them do swimming lessons because I don’t want them to drown! Matthew is on the waiting list to move to a Saturday class so that would free Tuesdays up, but at the moment there isn’t space for him. Alice absolutely loves gymnastics and Katie absolutely loves riding. They’re their ‘things’ and while they’re getting so much out of them I wouldn’t ever want them to give them up. The youth group Katie goes to is one that’s run just for autistic kids and it’s benefitted her a lot and built her confidence so that’s staying. Which just leaves singing and I have mixed feelings about that. The lady who runs it is passionate about supporting children’s mental health and has good intentions but she doesn’t have kids herself and it shows. She bombards parents with emails and has sometimes unrealistically high expectations about how much time kids can devote to practicing. I don’t agree with some of her initiatives, like the ‘golden microphone’ award that gets handed out each week to the kid who was most enthusiastic or knew their words the best etc. It’s a bit like ‘star of the week’ at school, which I also don’t like. If anything I think it demotivates some of the kids as there will always be the ones who are trying really hard but are consistently overlooked. But…Alice in particular does really enjoy it and they get involved with some really nice projects. They’ve recorded a CD, sung in concerts, got involved with Xmas lights switch on etc. And my mum pays for it and takes the girls when she can so singing is staying on the agenda as well for now!
Work is hectic at the moment and I sometimes feel I’ve taken too much on, but then it’s hardly like I’m the only working mum out there. I totally fell on my feet with my job as the hours are really flexible and it’s term time only so I can be with the kids through the school holidays and don’t have to worry about childcare. I also like what I do and the people I work with are lovely. A few months ago my role changed (at my request) which although was a good move for me it’s meant having to more or less start from scratch and re-learn a load of new processes. I also changed my hours so I could be around more after school, mainly for Katie, and although again it was my request and it’s great that work were flexible and allowed me to do that, I feel like I’m always bouncing between work life and mum life and not doing a good job on either of them. My head is never completely in work or completely with the kids. I’m usually in some sort of not very satisfying limbo where I’ve not quite finished what I wanted to be doing work wise or had to cut a conversation short with one of the kids because I’ve got to rush to get out the door on time.
If I break work and home down into small pieces I like them both. I’m really glad I can be around to ferry the kids to their activities. I get to see Katie light up when she gets to the stables, I see Alice’s perseverance at practicing her gymnastics moves, I get to see Matthew’s excitement that he’s been moved up a swim class. I see the improvements they make over time and I know what they’re talking about when they mention whichever horse or whichever person in their class. I get satisfaction out of my job and in spite of feeling like I’m not always concentrating on it as much as I’d like to, I am also quietly confident that I’m pretty good at what I do. Even the life admin stuff is fine when it’s taken in isolation. It’s nice that I can order Matthew his lunch and know he’s having something he likes, and permission slips generally mean something good is going to happen for one of the kids. It’s just when it’s all thrown together and I’m bouncing around endlessly from one thing to the next and the to do list is never getting any smaller and it’s hard to find the time just to cook dinner never mind achieve anything.
We separated the kids while we were away, so Katie stayed with my mum and step dad and Alice and Matthew stayed with John’s parents. We thought it would be easier for our parents than having all 3 kids at once, and also thought the girls could benefit from some time apart. Their relationship isn’t good and is something I probably should write about at some point but I’m not sure where to start. Unfortunately a break from each other doesn’t seem to have had any benefit which is difficult in itself.
The big thorn in my side at the moment is the tribunal coming up for Katie’s EHC needs assessment. I’ll probably do a post on that at some point but at the moment I’m alternating between furious and desperate and wish I’d never started it and I’m not in the head space to write about it. I submitted the request back in December, the LA refused it, I appealed, they rejected the appeal, and it’s now going to tribunal. The amount of time and emotional energy I’ve put into submitting all the evidence and responding to the BS the council is throwing at me is huge. The whole process is intimidating and demoralising but it’s out of my hands now because the final deadline for evidence has just passed and the case will be heard sometime before the middle of June. Whichever way it goes it will be stressful because if the tribunal agrees that there is no need for an assessment I’m out of options and that’s a big heavy door slammed in our faces in terms of accessing support for Katie at school. If the tribunal decides there should be an assessment that’s great but it will probably also mean another load of paperwork, a lot more time, and after the assessment there is still no guarantee she’d get an EHCP.
For now….keep calm and carry on. And look back on photos of our mini break!
I did posts about each of the girls and their personalities some time ago and have meant to do one on Matthew but never quite got round to it until now, which probably sums up his experience really – we have good intentions but as the youngest he definitely does get forgotten about sometimes! Even when he was born, in a lot of ways our relationship was just quite functional and it felt like it took a long time to get to know him because everything else was so busy. He would get put in his bouncy chair or I’d attach him to me in the baby carrier while I got the girls dressed or made them lunch or played a game with them, and he was just ‘there’. I didn’t have the time to sit and coo at him or work out his sleeping patterns or gaze into his eyes while I fed him. He had to nap around school runs and play dates and be fed at the same time as I was reading someone else a story or sorting out an argument. We did have two mornings a week that were just me and Matthew while Alice went to preschool, but the rest of the time she was around too or we were fitting in school runs for Katie or whatever else was going on for the girls. Thankfully I didn’t experience post natal depression again like I did after having Alice, so I wasn’t worried that getting to know him was taking a while, and it was a lovely if slightly chaotic process.
It sounds so easy to say he had to nap around school runs and play dates, because I know from experience (Alice!) that not all babies do just slot in to the schedule but luckily for the most part Matthew did. Apart from the fact that he was a milk guzzling monster and took forever to sleep through the night he was a pretty easy going baby and for the most part he has always just got on with things and put up with having his schedule determined by whatever else might be going on.
Without meaning to compare the kids with each other, in a lot of ways Matthew is the middle ground between the girls. They are complete opposites in almost every way I can think of and don’t do very much together at all. Alice likes imaginary play whereas Katie likes practical things. Matthew will happily do both and will be playing games with Alice and then go and do some gardening with Katie and John. He’s pretty flexible and doesn’t seem too bothered that with two older sisters he never gets much of a say in what they’re going to do or what game they’re going to play, he just mucks in and gets on with it. The girls tend to play just with other girls and don’t like boys very much, whereas Matthew’s friends at both preschool and now school have so far been a mixture of both. Alice very much plays with stereotypically ‘girl’ toys. She’s very into dresses, dolls and mermaids and Matthew loves to play with her especially when they play with mermaids in the bath. He also loves tractors and screws and more typically ‘boy’ toys, jumps off things constantly and rides his bike like a maniac.
All my 3 have been huggers and although I still hug the girls or hold their hands etc, they’re too big now to come and sit on my lap or be picked up, whereas Matthew can still do that and I’m making the most of it before he grows too much as well. It’s such an automatic thing that you don’t notice until one day you suddenly realise you’re not doing it anymore. If I sit down with a cup of tea (yes! My kids are old enough that I’ve passed the stage of reheating the same cup of tea 5 times before I actually get to drink it or giving up and drinking it cold, wohoo!) more often than not Matthew will appear and worm his way onto my lap or snuggle up next to me and he’s very affectionate in general. He’ll come and give me a kiss or he’ll quite often just stroke my hair or stroke my arm or tell me he loves me. He’s never got the concept of someone saying “I love you” and the other person saying “I love you too.” He always dives straight in with “I love you too Mummy”.
At this point Matthew is 5 and he’s small and cute and he knows it. I just can’t imagine him growing up and getting hairy and smelly!! One of my friends is always saying she wants to adopt him and every time Matthew sees her he literally puckers his lips and flutters his eyes at her. He also knows exactly how to wind the girls up and can 100% take on the mantle of being the annoying little brother who then makes out that he’s so sweet and innocent and denies all knowledge of why the girls are cross with him.
Matthew loves a bit of toilet humour and his favourite toy ever is a joke poo! He has hours of fun throwing it around and thinks he’s hilarious when he sticks it next to our cat or leaves it on a chair that someone is going to sit on. He also sleeps with it under his pillow! We generally get an announcement when he’s gone for a poo and he’ll proudly take the credit for his burps and farts. He also loves a ‘wild wee’ and will take the chance to take aim and water a bush or a tree pretty much any time we go for a walk!
Matthew can be quite sensitive. He notices things and he’s a real charmer – he’ll comment if I’m wearing a new top or he’ll tell me he likes the earrings I’m wearing because they’re pretty. Last year when the girls were both at school we had Mummy and Matthew Thursdays where I didn’t work and he didn’t go to preschool, and at the time he would always let me know he liked our Thursdays and now he’s at school he still tells me he misses them. Last year our next door neighbours had a fire which was all very dramatic and we came home one day to find fire engines and police cars down our road with the lights flashing etc. I think people expected him to be excited about the emergency vehicles but he wasn’t really, he was quite tearful until he knew everyone was OK.
Having said that he’s also quite stoic and just gets on with things. He’s not a poorly child as such but he has been prodded and poked a fair few times for blood tests and skin prick tests etc, and the doctors and nurses always comment about how good he is and give him extra stickers. He doesn’t cry, he just sits and watches what they’re doing. He has asthma / viral wheeze (not entirely sure which or if they’re the same thing – basically he has had respiratory issues on a few occasions) which have resulted in hospital admissions for oxygen and nebulisers, and he uses daily preventative inhalers and takes a pill before bed each day which he does quite happily. He also has a severe peanut allergy. As he’s still young and his immune system is still developing he has yearly check ups to see if it’s stable or if it’s changed, which he does fine with. At the moment he has to carry epipens with him wherever he goes and isn’t allowed to eat food with peanuts or which say may contain peanuts on the packaging, but his last test suggested his allergy had improved so we’re waiting on the results from a follow up blood test and fingers crossed he’s cured himself!
Matthew is literally the tickliest child I’ve ever met. You just need to approach him with a wriggly finger and he’s in hysterics and I don’t think there’s an inch of his body that isn’t tickly. He also loves being tickled, which for the life of me I can’t understand as I hate it, so we spend lots of time tickling him while he squirms and can’t breath for laughing!
Matthew in 5 words – entertaining, energetic, loving, cute, noisy
When we got Katie’s report following her autism assessment it included a list of reading materials to help us and Katie understand autism better. One of the books was “I’m An Aspie Girl” which is aimed at girls aged 5-11 ish (Katie was 8 at the time). The terminology is outdated as it refers to Asperger’s, which isn’t officially diagnosed anymore and is also a term that most of the autistic community reject, so in all honesty if I was given the list now I wouldn’t read that book. However, this was about 18 months ago and I wasn’t aware of the issues with the terminology then so we did read it. The book is written from the point of view of a girl called Lizzie who describes how she feels about certain situations as an autistic girl, what she’s good at, and what she finds difficult. I read a number of reviews all raving about how great this book was, and I bought it.*
I read it with Katie one evening, not necessarily with the aim of explaining to her about her diagnosis, but more just to start bringing autism in to conversation. She was tired and had a headache but had asked for a book so when I started reading she was lying on her bed half paying attention.
Within a few pages her ears had pricked up and she sat up and started following the book with me. Within about 6 pages she piped up and said “Mummy I think I might be an Aspie girl!” With each page she became more and more engaged and started talking about things without me needing to prompt or ask questions – telling me the smells that bothered her, the friends that she found it especially difficult to share, the difficulties she had in getting her ideas across to others at play time, how she didn’t like being in groups. Some of this I knew anyway but because of my own observations of her rather than because she’d talked to me about it. Some of it was a complete surprise – I’d never even known she was sensitive to any smells but she told me the reason she didn’t like it when I changed my car was because she hated the smell of my new car and about how certain people’s houses smelled funny to her but that no one else noticed anything.
And over and over again after each page “Mummy that’s like me”, “I do that too!” in an excited voice, and at the end of the book “Am I an Aspie girl?”
I asked her how she would feel if she was. She told me that she liked Lizzie and that would be OK.
“Yes sweetheart you are.”
A smile from Katie and a request to read the book again. So we did. And again on each page she stopped and talked about the ways that she was the same as Lizzie. She asked me if there were other autistic people at school so I said yes there would be. Katie is left handed so I explained to her that in the same way that a few others in the school are left handed but most of them are right handed, there would be other kids at school who were autistic and whose brains work in the same way as hers, but most of them work differently.
She hugged the book and asked me if she could keep it. She went to bed that night without getting up again and saying she was scared, without panicking that she was going to be sick, and she slept all night (which was probably the last time she did that – her sleep generally is pretty rubbish!)
As a family who knew next to nothing about autism it seemed at the time that this exploration into understanding more and explaining things to Katie had gone pretty well. However, from Katie’s point of view her initial positive reaction very quickly turned negative. She had started to experience a lot of issues at school and was becoming more and more aware that she struggled in ways that others didn’t. She was often very upset and described herself as weird and stupid. She realises she is different from most other people her age but she doesn’t want to be and her self esteem is pretty low. To her mind autism has not been something to embrace, autism is the root of all her problems and something to blame.
One of her constant questions has been where are the other people like her? I told her there were other autistic people and other autistic children but couldn’t put my money where my mouth was and show her that she wasn’t alone because we didn’t know any other autistic people (or thought we didn’t!)
That has changed a lot over the last 18 months. We found a local charity that runs a youth group for autistic children, and Katie now goes to that each week. She enjoys it and has made a really good friend through going there. It’s the kind of relationship Katie really thrives on. She and this other girl are completely in each other’s pockets and have formed an intense relationship which is equally balanced on both sides – which is great for Katie because there have been other times when she’s been very invested in a friendship but the other person understandably wants other friends as well and doesn’t want to be exclusively with her.
Katie has also made two friends at her new school. Although it’s a mainstream school there is quite a high proportion of SEN kids there as other parents are attracted to it for the same reason as us – it’s small and quiet, the staff can really get to know the students, and it’s generally a more suitable environment than a mainstream school that’s 10 times the size. Of her two new friends one is autistic and one has huge anxiety and is on the pathway for an autism assessment. It’s been huge for Katie’s confidence to be at a school where she doesn’t feel like the only ‘different’ one. Her old school has 400+ kids in it but (this is just my experience anecdotally) only really seemed to offer support for the ones who were falling behind academically, not the ones who were struggling emotionally or because of sensory issues. I have come across numerous parents who were in the same boat as us and ended up moving their children to different schools because they were just not being supported or accommodated in any way. The lack of support was an issue in many ways, including the fact that it reinforced Katie’s feeling that she was the only ‘weird’ one. In comparison at her new school she sees other kids having alternative arrangements made for them, going to quiet spaces, having movement breaks, using noise cancelling headphones etc, and she now feels that it’s OK for her to do those things too. She used to be embarrassed to be autistic and was adamant that she didn’t want anyone to know, but she has voluntarily told her new friends and found that she’s not the odd one out because they are (or possibly are) autistic as well.
Katie and my niece have had a special relationship ever since they met. My niece Cara is 9 months older than Katie and we didn’t see much of them when the girls were little because my sister lived in America, but whenever we did see them the girls were always so excited to see each other. They have been back in the UK for the last 7 or 8 years and live 10 minutes down the road from us (yay) and I am SO pleased our kids are all growing up together. Katie and Cara have always been happy in each other’s company although in a lot of ways they’re quite opposite to each other. Katie can really be quite intolerant of kids her own age and gets annoyed with them quite quickly, but I’ve literally never heard her say a cross word about Cara. Well Cara has been on her own journey and has recently been diagnosed as ADHD and autistic, as has my nephew (my brother’s son) who we don’t see nearly as often but is someone who again Katie has always got on really well with.
I think it’s been quite a revelation to Katie that she’s not alone, especially given that her two favourite people (Cara and Poppy her friend from youth group) are also autistic. Her definition of weird has become much more positive and she set up a messenger group for the 3 of them called The Weird Girls Group. I think her relationships with the small group of friends she has have become a lot easier because they are all neurodivergent. It’s not at all to say that she can only be friends with other autistic people and not neurotypical people but whether she realises it or not she seems to be more naturally drawn to people who aren’t neurotypical now that she’s in environments where she’s got that option. Which I guess is the same for neurotypical people but it’s a lot easier for us because we’re always the majority.
I hope it’s a springboard for Katie to feel more positive about herself, calmer and more settled with her friendships, and know that she is not alone.
*For anyone reading this who might be needing to have conversations about autism with their children or who is looking to get more understanding, I wouldn’t recommend “I’m An Aspie Girl” because of the issues with the terminology it uses and I’ve only referenced it here because of our experience at the time. There is a great video which has recently been released which I can’t share because it says playback on other websites has been disabled by the video owner, but please go to YouTube and search for “Autism acceptance 2022 The Neuro Bears”.
Mum life 