Life

Just another day as a SEN mum ….

Well, it’s been a minute hasn’t it. I said I’m back then go missing for a couple of months but you know how life gets. I feel like life has been “life-ing” at the minute. It’s been busy & things with Billie have been a rollercoaster of late. Why is it with additional needs children, when you feel like you’ve put one fire out, another one lights? It’s as though you’re running on a treadmill with no emergency stop button. I feel like it’s been so long since there has been a period of just living with no immediate concerns with Billie. I mean, personally, she is just living her best life but as a parent, I’m exhausted! So let’s get you guys up to date!

Ok so the first thing I’m going to chat about is sleep. I’ve wrote a blog about sleep previously and highlighted that autism & sleep are a complex duo. Some children with autism don’t have issues with sleep, just like Billie in the past but many have serious troubles. When Bills was younger, she would sleep really well but with occasional night wakes that could last from 1 hour to sometimes 3 hours however she would happily lie in her cot until she drifted back off. However, recently, things have taken a bit of a turn. I would say when we transferred Billie from a cot to bed, is when things started to change. We delayed this transition for as long as we can because we knew that she would take every advantage of her new nightly freedom … & we were right! As she is now more able, she would get out of bed once she woke in the night so we would be constantly getting up to put her back. She also never really had issues falling asleep, it was staying asleep that would be the issue, but again this has now changed. She now doesn’t fall asleep for hours after putting her down and can wake up just a few short hours later and be up for the day. Recently she has woken at times like 0310, 0400, 0410 and she would be up for the day. When I tell you it’s an absolute killer … is an understatement. The most recent one was she went to sleep at 8pm, woke at 2345 and was up all night! She had a little nap at around 1030am for about 2 hours and then she was her normal self for the rest of the day. Not only can this lack of sleep hugely affect her, her mood, how she is at school but it’s has an escalating effect on the family. If she isn’t feeling 100% because she is exhausted, she can be harder to stimulate and regulate meaning her mood isn’t great. This affects time I can spend with her sister or even her behaviour towards her sister. It can also make me feel off, grumpy, snappy because I’m exhausted which means I’m not so patient with others or being the best I can be. She does take melatonin but to be honest, I don’t think it’s working great. I’m trying to have her dosage increased but we all know how some doctors can be.

I know it’s not her fault and she can’t help it & it’s just another one of those things that comes with autism that we all have to accept but my gosh, it’s just hard, isn’t it. No wonder so many parents of additional needs children can not work. Not because they don’t want too but just because they can’t. Some days, I’m so exhausted I literally do the bare minimum I have to do in a day to keep everything afloat and everybody happy- never mind throwing a job in the mix. Of course there are plenty of reasons why so many of us parents are currently out of work but this has to be one of the biggest contributors! If your child struggles with sleep, when your next awake in the middle of the night gripping onto the last bit of sanity you have, just remember you’re not alone and there are most likely, plenty of other parents doing the exact same thing!

Another biggie that we’ve been dealing with lately is school. Now again, I’ve talked about Billies school in previous blogs, & I’ve always held it in such high regard but the last few weeks, they’ve really put a shadow of doubt over that opinion. Billies goes to a mainstream school & she has a 1:1. She absolutely loves it & her 1:1 … so much so, she is genuinely sad during the school holidays! With the end of the school year approaching, we were starting to wonder about the schools plan for Billie next academic year. Back in March, I had a meeting with the school SENDCO to discuss Billies EHCP and in that meeting, it was brought up that Billie may have to repeat reception rather than go up to year 1 with the rest of her peers. The reason they had was Billie not being able to keep up academically but also the environment not being “right” for Billie. I automatically didn’t feel comfortable with this. Firstly, she adores her classmates so much and they love her. They are so understanding of her and tolerant and just all round beautiful kids so I wasn’t comfortable with the thought of taking Billie away from that. Secondly, who is anyone to decide what Bills can or can not cope with before letting her have a try first? She has shown unbelievable progress this year at school, way more than I would have very believed or imagined 18 months ago so who knows what more potential she has in her. We did however come to a joint agreement that Billie most likely won’t be able to continue her education much past year 1 in a mainstream school & im ok with that. I agree with that. But until then, why not challenge her and see how far she can go with a little encouragement.

After that meeting ended, we agreed that we would have another one not too long after with a set plan for Billie going forward. However, after many emails and phone calls from myself, no meeting was ever planned. At the end of last term, I finally received an email saying that I would have to wait for an answer on Billies future until a meeting that would be set during the last term of school. Again, this put my back up. If the school were making decisions I wanted to appeal, it didn’t give me a lot of time to appeal it. Sure enough, that is exactly what happened. However, no meeting was set but I was sent an email saying that yes, Bills can go up to year 1 for the majority whatever that meant BUT they were going to change her 1:1. Straight away, I felt sad, disappointed, angry and confused. Why on earth would they take the one person who Billie trusts, loves, listens too and has contributed so much towards Billies progression away from her? It’s just cruel. Her 1:1 is her constant and over the year, they have really got to know each other and built such a great bond. Billie feels happy and safe to go to school and that is mostly down to her 1:1 so again, why change it? The schools reasoning was because her 1:1 has a lack of experience and therefore won’t be able push Billie with the year 1 curriculum … but Billie doesn’t even follow the national curriculum so that point is invalid. The school are also not getting anything out of Billie academically if she is not happy & taking her 1:1 away will result in her becoming unhappy.

Billie will go through so much change from September- new classroom, new route to school as her classroom is at a different part of the school, new teachers, new environment plus her dad is going away for 4 months with the military from October. So again, why add more stress and more change? It honestly blew my mind! I spoke with her 1:1 and she wasn’t happy either. She said she wanted to stay with Billie and she let that be known to not only myself but also to the school. Anyway, I set a meeting with the SENDCO & another member of SLT which didn’t go great. I stood my ground and they stood there’s but I wasn’t giving up. Just over a week after that, I attended the SEN parents evening at the school where I again raised my concerns to both her class teacher and the SENDCO which finally resulted in Billie being able to keep her 1:1 next year. Of course I am ecstatic about it but that was 3 weeks of stress and worry that ultimately did not need to happen. There were other aspects of the plan to change 1:1 that I won’t go into that also made up feel concerned so yes, I do feel as though it’s a victory but one that never needed to happen. So my message from this, is never give up fighting! If something doesn’t feel right, stand up and make your voice heard. You know your child better than anyone else and you have to advocate for them because ultimately only you truly care about your child & their future.

Alongside that, we of course had the annual dummy speeches from the dentist, toilet training lectures from, well, everyone and the classic dead ends with the professionals. We’re currently trying to get started on the ADHD diagnosis pathway for Billie which I’m sure for those of you that get it, don’t need me to explain the complications of that, and for those of you that don’t get it …. Imagine constantly running towards an automatic door that never opens when you get close to it.

Anyway, so that’s my little life update as life parenting autism! I hope you’ve all been enjoying the beautiful sunshine as much as you can as again, what is beautiful and welcomed by others, for some us, it just brings a heap load more of struggles. As always, feel free to leave any comments, tips, experiences or if you just want to get something off your chest, feel free to do so. Until next time ….

Speak soon, xo