Letter to my sons nursery SENCO

Dear Hannah,

Before you rush off on your secondment to manage another nursery, I wanted to let you and everyone else know how much my family have valued you, particularly over recent months with the dreaded EHCP process. 

The Monster started at the nursery you work at as a two year old. We knew back then that he was different but we were still in the depths of appointments, awaiting a diagnosis but suspecting autism. Choosing a nursery and placing our ultimate trust in a place to look after our child with differing needs to a “normal” child was no mean feat. You were the Deputy Manager and the nursery SENCO, I knew I needed to see something in you that others perhaps don’t consider, I knew you would work closely with The Monster and I would need to interact with you more than most parents need to. YOU were the absolute reason we chose to send The Monster to that nursery. You know every single kids name and they buzz around you when you walk in the room all of them getting your attention. Your passion is evident and the needs of the children and staff alike is of obvious importance to you.

I’d be lying if I said it has always been plain sailing. There have been times in the past where I have had to have difficult conversations with you, it really bares no significance now but I have to say what complete professionalism you and the team have dealt with my grievances and how your reactions have actually had a more positive impact than the grievance in the first instance (that’s quite an accomplishment to impress the queen of complaining 😂).

I want to thank you for bearing with me when I burst into tears when you wanted to move The Monster into his pre-school class before I was ready (it really was the hormones!) It was the best move for him and he has come on leaps and bounds in that class. I want to thank you for all the one to one support you have given The Monster and all of your precious time I have taken up chasing up news of emails from various sources and various funding options.

I want to thank you for all your time in writing his reports which formed part of his EHCP, it is through reading them that I really got to appreciate that you “get” him. Likewise thank you for helping with the report I have written. I know this process has been a learning curve for both of us.

I want to thank you for being present in all the meetings we had at nursery with third parties. Those for me are difficult, it is hard talking about all the things your child can’t do. It is exhausting going over and over how your child has such significant needs that they won’t cope in a mainstream school.  I want to thank you for being the diplomat in meetings when I haven’t been able to hide my disappointment and anger when things have been delayed by weeks / months and the right people haven’t even turned up for a meeting.

Thank you for all the behind the scenes work and meetings you have had concerning The Monster and his development and for offering to come back for meetings etc moving forward.

I’m sure I won’t be alone in wanting to thank you for being one of the spearheads in giving our children the opportunity to attend an Ofsted rated Outstanding nursery. 

Best of luck in your new role (but dont take too long to come back!) you will nail it. You’ve not just been a Deputy / Acting Manager, You’ve been a friend and have made my life and The Monster’s life easier, which definitely hasn’t gone unnoticed.

Thank you so much,


The Monster’s Mummy
X X X X X 

School Runs and Shopping Trolleys
Advertisements

10 THINGS YOU DON’T KNOW ABOUT BABY/ CHILD PROOFING FOR AN ASD CHILD.

I’m taking part in the SEND 30 Day Challenge.  Today, day 2 is titled 10 things you don’t know about. 

I’m going to focus this on monster-proofing. You may know this better as Baby-proofing / child safety. The two are similar but NOT the same, as other parents with ASD (and other) diagnosis’ may also understand!

Please note this list is relevant for us here and now. It will change over time as our four year old ASD guy (The Monster) gets bigger, stronger and potentially more vulnerable

1. The best place for a TV is on the wall (RIP TV #1&2) thus eradicating the ability to knock pull it over. NB being on the wall does not make it safe, but rather makes it safER. You may want to consider a TV screen protector or armor to protect it.

2. Many ASD children are runners / escapists. Door and window alarms are quite literally life savers for many. We don’t need to invest just yet but they are definitely on the radar for later.

3. Soft furnishings are scarce and out of reach permanently.  If left within reach they get moved, put in mouth, broken, knocked over, played with etc.   

4. Our hot tap in the bathroom does not work. We have deliberately not fixed it to rule out the risk of The Monster scalding himself. He loves water and playing with taps is a must.

5. We will hold onto The Monster’s hand or use reigns / pushchair / stroller etc when going anywhere. He is not safe enough to walk in public / busy places without either being strapped down or in physical contact. 

6. I conduct Risk Assessments constantly! A visual inspection Is a minimum everywhere we go.  I see danger in things that nobody else will.

7. The Monster’s spatial awareness is limited so he still has a bedrail and  corners and sharp edges around the house are padded to prevent accidents, especially as our space is small and he can he sometimes stims (spins, bounces etc).

8. Medicines / lotions and potions / cleaning equipment etc is locked away or kept completely out of reach. You would probably expect to do this for any 4 year old, but this will likely be a permanent fixture in our house.

9.  Stools, chairs or anything else that can be used as a platform to reach  or climb something are closely monitored. The Monster is fearless and sees no danger in things.

10. With The Monster due to start school and getting a bit more independent we are looking at getting a tracker for him. In the event that he gets lost or runs off he wouldn’t be able to tell people anything as he is non-verbal. We need to be able to locate him quickly if this ever happens.


So there you have it. Are there any things you would add?



#SEND30DayChallenge

Special thanks to https://www.mumoam.co.uk for hosting the challenge. 

The good the bad and the ugly!

Anyone else feel like they are on a permanent rollercoaster!? Here’s all the aspects we would need to incorporate into a design if we had to build our own…

The Good Bits (the bits that make you scream happily, and make your tummy do butterflies!)

1. The Monster is the happiest kid I’ve ever seen.
2. We celebrate the small things.
3. He appears to be completely oblivious to any negativity.
4. He never fails to make us laugh daily.
5. He spreads autism awareness most places he goes!
6. He brings the good out in people.
7. He adapts well to most things.
8. He will randomly do something that will make you burst with pride.
8. On a good day everyone enjoys his company.
9. He can be super loving and cuddly.
10. He can nearly always communicate his needs in one way or another.


The Bad Bits (the bits where your heart pounds and you’re scared / apprehensive about what’s coming next!)

1. Disciplining The Monster is virtually impossible.
2. If you like sleep, you’re screwed!
3. “I know a song that’ll get on your nerves, get on your nerves, get on your nerves. I know a song that’ll get on you’re nerves. Get. Get. Get on your nerves”. AND REPEAT….


The Ugly Bits (the part of the ride you dread, but you know you have to go through it to get to the good bits!) 

1. It’s all just a waiting game. Nobody can give answers about how he will develop.
2. There is a constant battle against the system to get him the support he needs.
3. We still live in a judgmental world, there is a lack of awareness / acceptance and empathy for special needs.

Our ride would have lots of ups and downs, loop the loops and it would be loud and unapologetic.  You would keep coming back to ride it over and over because there are a whole lotta good bits going on that by far outweigh anything else, even if at times it doesn’t feel like it. 

Face of Mum

You will only see this on here once. A tear stained, blotchy face and stinging red eyes. Not an uncommon occurence in reality but a face of mum that you can’t see behind a keyboard.

Today we have spread autism awareness everywhere we have been. It would be great to be able to pick and choose where and when we do this, like I can on here but in reality we can’t turn autism on and off.

This face of mum has been up since 4am this morning (aside from the sleeping with one eye open until finally relenting and putting Cartoonito on at 6am). Apparently that’s an acceptable time to start the day – not for the first time in recent days. A 4am start combined with 3 get ups for The Small One through the night no less. 

This face of mum has been on a playdate with friends this morning.  A pang of jealousy ripped through her for their seemingly normal life. Four year olds playing together nicely in a bedroom. Parents eyes not fixated on every move their child made. She hates that feeling of jealousy but the feeling of guilt for feeling it in the first place is worse. The Monster was golden until it was almost time to go and he spread a sprinkling of autism awareness in the form of running at lightening speed through the house, escaping upstairs and trying to then come down unaided, shouting, refusing to put shoes on, slamming doors, lying on the pavement and refusing to walk to the car.

This face of mum has taken the boys to the Dr’s where The Small One had an appointment for his jabs. Here he spread his usual autism awareness by turning the self check in screen on and off and caused havoc in the waiting room, with the additional excitement of some furniture being brought into the surgery. Game over. Luckily they were then given a private room to wait in and the lovely nurse gave The Monster a pack of sweets whilst The Small one had his injections. After playing with the taps and a splash of water around the room later they left having only received a couple eye rolls from the elderly couple in the waiting room.

This face of mum instinctively let go of the pushchair for 3 seconds max to check The Monsters hands whilst walking home and he rubbed his hands through a thorn bush. In those three seconds (max) the pushchair had free rolled into the road and was still moving. Thankfully there were no cars coming.

This face of mum has received post for yet another hospital appointment for The Small One. As usual on a day The Monster is not in nursery. This mum can’t deal with thinking about that today.

This face of mum has had emails from The Monster’s Educational Psychologist today delaying an appointment made for June by almost a month and also wants another meeting in less than a weeks time, looks like she will be facing that one without Dad again.

This face of mum has packed the boys in the car and driven until they have both fallen asleep just so she can catch her breath today.

Today, this mum craves normality, an easier carefree life for her babies. 

    

Five reasons my son’s Autism diagnosis has made me a better person. ..

I firmly believe my sons diagnosis has made me a better, kinder person. Here’s 5 reasons why:

  1. Autism has made me realise that kids you think are being naughty might not be. Those kids lying on the floor in the supermarket screaming, or being out of control in a restaurant may not just be being awkward or being naughty. There could be a medical reason such as autism, ADHD, Sensory Processing Disorder or a whole plethora of other reasons which I wont pretend to understand. The fact is, these kids aren’t always being naughty. The parents do not need another eye roll, they need help and understanding.  
  2. Everybody’s notion of hard is different. To me, my son’s  autism is hard. Knowing I may never hear his voice is hard.  Fighting the system (always) to get help and support is hard. Being sleep deprived is hard. Communication on all levels with my autistic son is hard. But my level of hard doesn’t  make your level of hard any less and my level of hard shouldn’t be any less than your level. Took me a while to appreciate that. 
  3. People will tell you they are ok when really they aren’t. It’s not often people ask how I am and get full chapter and verse, that I’m struggling, that I’m burnt out and that I need help. Not many know that side of me because society dictates when we are asked how we are we respond “alright thanks, you?” also, because I don’t want to burden you or make you uncomfortable.  I set this page up as a form of therapy for myself but also to educate others and to offer support for others following the same journey. It works, I’ve had messages from people saying thanks. 
  4. You’re only ever a couple of steps away, or a couple of wrong decisions away from losing it. Your sanity, your house, everything. Who you are or what you have doesn’t alter it, that’s fact.  I try not to just walk by the homeless on the streets. I stop and have a chat, ask them if they have somewhere to sleep, if they are warm enough, how their day is looking before offloading shed loads of snacks to them.  Autism hitting our house didn’t make me do that, but what it did do was open my eyes to life’s struggles and challenges that people go through. Often with little or no warning your world can be turned upside down. 
  5. Autism has made more accepting of people.  I understand  now more than ever that everyone is different and that’s a wonderful thing. 

What is it they say? When life gives you lemons, make tequila. Or in my case: When life gives you autism, be kind 💖 (I’ll  take the tequila too please, thank you!).

      A journey down Diagnosis Lane.

      Hello,

      I’m the mum to an almost 4 year old boy who I affectionately refer to as The Monster, and a baby boy who is 3 months old. I’m a long time partner (but not wife as he refuses to put a ring on it) to my other half.

      I often get asked how we knew The Monster was different. What triggers were there that made us question his ‘normality’? Well in short we didn’t realise he was different since we had no comparison. Was he hard work? hell yes. Was he challenging? of course. Was he hitting all his milestones? Some but not all. All sounds pretty normal to me. Nobody had ever told me having kids was easy so I assumed this was ‘normal’. The fact I’d managed to eat toast and have a shower which I’d been reliably informed was impossible when you had a small person meant we were winning, surely!? 

      It was his childminder who raised the flag. She described him as having tunnel vision and very busy. His speech wasn’t coming, he was super noisy but no words and he was mildly delayed at walking, taking his first steps at 17 months. When she told me in no uncertain terms that he was, quote “hard work” it was music to my ears. I thought all kids were this challenging! And so with that we mentioned it to our GP and the ball started rolling….and rolling….and rolling. Here began what was to become a just over two year diagnosis process. 

      In the months that we waited for his first appointment with his paediatrician I raised the flags with The Monster’s health visitors. His two year check was fast approaching and I was now more aware than ever of the things he wasn’t doing. He used to wave but had stopped, he used to say hiya but had stopped. He didn’t have enough concentration to hold a crayon never mind draw a line and he was constantly busy. Sleeping was cheating and being up for several hours in the middle of the night wasn’t an uncommon occurance. Everyone assumed it was normal waking and nothing some sleep training wouldn’t resolve. I finally broke, ringing the health visitors uncontrollably sobbing down the phone after a particularly long stint of about 4 hours broken sleep a night. They sent someone around that day. But they still didn’t get it. The boy did not sleep! This was to continue until the actual day of diagnosis when I was finally granted the magic potion, melatonin. Hello sleep…oh wait, hello newborn baby! 

      At the first paediatrician appointment I was asked a whole host of questions whilst The Monster ran rings around me. He turned on every switch he could find, played with the taps, banged the window and avoided all toys in the room, obvs. At least he was on form and she could see what he was like. We got refered for a hearing test, a speech and language appointment and for an epilepsy test since he was having frequent episodes of staring into space. We waited so long for these appointments to come through that I arranged the hearing test and contacted a speech and language therapist myself. Eventually he had his epilepsy test and it came back normal. After over 18 weeks we still hadn’t heard anything for the other follow-ups so I contacted the paediatrician to find out what the blooming heck was going on, only to be told his records had been archived rather than sent to the relevant departments. Furious. Lucky I had been so pro-active or he could’ve been lost in the system forever. By this point I already had a speech and language report and he was undergoing more hearing tests which at least meant we didn’t have to start afresh. I can’t recall too much from the next appointment with the paediatrician other than to confirm that he needed further assessment.

      In the months that followed we confirmed he had no major hearing problems that would affect speech. He had an NHS speech and language appointment and he was observed at home before being refered to the multidisciplinary team for observations which would ultimately lead to a diagnosis.  

      I did my homework. I read and read and read about autism, I completed countless quizzes online and I watched The Monster a lot. I did all this in secret. I was plagued by guilt for looking so much. What if he wasn’t autistic, what if he was ‘normal’ after all? 

      Communication was becoming increasingly difficult. He was growing physically but mentally and emotionally he was now much behind his peers. He still didn’t talk, he only just started waving and he couldn’t nod to indicate if he wanted something or even if he liked something. We started signing and amazingly he picked up a few. Progress at last. His behaviour was at times uncontrollable and I began dreading going to new places. On one occasion before diagnosis I apologised about his behaviour and said he was autistic. That was the first time I used the ‘A’ word to anyone outside my circle of friends and family. He wasn’t even diagnosed. He had tried to nick someones mobility scooter so I had to say something! I had a lump in my throat the size of a grapefruit and I cried all the way home. 

      Time went by and I had it all but confirmed that he was autistic. I was relieved when the assessments came around. Another step closer to it becoming formal. But what if they didn’t see what I saw, what if in the hour a week that they observed him he was on good form, what if he wasn’t behaving autistic enough!? 

      The assessments came and went and finally D Day (diagnosis day) loomed. My partner and I were handed a 13 page dossier before entering the room. It was tough reading but also made me laugh out loud. They had seen what we see. They had him down to a tee. We entered the room and were granted the sofa whilst the paediatrician and 2 other professionals sat opposite us. Not daunting at all! We went through their report fully before finally being told “He has Autism Spectrum Disorder”.  I think they expected us to crack there and then, constantly asking if we were OK. My feelings? Relief. Sadness. Happiness. Grief. Real.   

      It’s been five months now since The Monster was diagnosed. I still grieve for the child I thought we would have. It gets me some days that I may never hear my boy talk, I may never see him ride a bike, have a partner, get a job, learn to drive, leave home. I’ve learnt it’s OK to be sad sometimes and I don’t feel guilty for shedding a tear about it. It doesn’t mean I love The Monster any less. If anything I love him more. He has taught me to always be kind, to be compassionate, not to judge, to be patient and to be a better person. All this and he isn’t even four. That’s pretty epic. 

      I no longer feel guilt for accessing support and I can talk freely about his autism without feeling like I am betraying him. 

      My name is Lisa and my son is autistic. 

      Why helicopter parenting is absolutely necessary in our world…

      We live in a world where everyone is quick to judge and everyone has an opinion and is keen to express it. This is especially true when thinking about parenting. Breast feeding, bottle feeding, stay at home parent, working parent, 1 kid / 10 kids, single parent, same sex parents. You name it people judge you for it. 

      I’ve read a couple of blogs recently where so called helicopter parenting comes under fire. Dr. Dunnewold PhD says, when referring to this style of parenting with toddlers…

      “a helicopter parent might constantly shadow the child, always playing with and directing his behavior, allowing him zero alone time”  

      I’m here to defend why we have to helicopter parent our child. You simply can not judge this style of parenting for every kid. The Monster is autistic. He needs to be hovered over.

      We will be the ones hovering over our child at the park, chasing his every move and being in his shadows. 

      Why? The Monster gets so excited when he sees people on swings that he thinks nothing of running in their path, he could be knocked over by them causing significant injury. He picks things up off the floor he shouldn’t and wouldn’t think twice about putting discarded food / drink in his mouth, or anything else could also get put in his mouth due to his sensory needs.  He runs everywhere in an uncoordinated manner and frequently needs peeling from the floor and dusting down after a fall. His attempt to make friends often involves pushing other children, understandably this doesn’t go down well with said children or their parents. He doesn’t understand park etiquette; queuing for the slide? Why do that when he can push himself to the front knocking down whoever is in his way. 

      To make the park an enjoyable visit for everyone, we will follow him, play games with him and teach turn taking. We encourage his independance and follow his lead but we will be in his shadows and guide him when necessary.

      We will be the ones not letting him walk down the road (path strictly speaking) without either a tight grip of his hand and / or reigns on.

      Why? The Monster has absolutely no sense of danger. He also has very selective hearing and will most often not respond to being told to stop, wait or walk. He would think nothing of running into a busy road into oncoming traffic.He will not just walk alongside us, instead he runs, opens and closes neighbours gates, attempts to touch all parked cars and if he sees our car the other side of the road he would run over to it regardless of what’s in his path. 

      It would be nice to be able to take a leisurely walk where he could run to the next lamppost and wait, or run a stick along a metal fence, or take his scooter / bike to the shop but he simply can’t be trusted to do any of these things without us being in physical contact with him. I would consider one of those retractable dog leads if I could get away with it 😁.   

      We will be the ones not able to relax even in the confines of your house.

      Why? There is a running joke amongst family and friends that there is baby-proofing and then there is Monster-proofing. I am so on edge when at peoples houses that I rarely get to have a focussed conversation. He will play with your phones, pull over your ornaments, turn over your TV, destroy your CD / DVD collection and your DVD player when putting several in at a time, he will drink or knock over any cups / glasses, he will put anything that fits into his mouth.  He can’t do gentle, so even his attempt to look – with his hands in typical kid fashion! he is likely to damage / break your belongings (RIP TV number one). He will turn on your cooker, slam your doors, go in your wardrobe, grab your hoover and flail around the house pretending to clean without a care for what he breaks in the process (RIP TV number two),  he will love playing with your housephones, especially when they make a noise. He will yank at your blinds and wrap himself in your Laura Ashley curtains. He will run your taps, bang his hands on your windows, climb on or even in your furniture and go around turning your plug sockets on and off. And that important mail on the side? Yeah that’s probably been shoved back through the letterbox all screwed up and ripped. Those toys you got out for him to play with? They’re still neatly where you left them when we leave, natch.  Nothing is safe. I have to do a risk assessment in every house we enter, often moving your belongings out of reach. 

      Of course, these are extremes and in familiar environments we can relax a bit. They are real life examples but don’t worry, they didn’t all happen in one day! 

      Helicopter parenting still a bad idea? I didn’t think so. Hopefully we can relax this style of parenting as The Monster gets older. We want him to be independent, we want him to grow, to flourish to experience his world without us in his shadows but right now he needs us to guide, teach and protect him. So for now… 

      We’re the pilot and he’s the co-pilot!