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 đź’– (I’ll  take the tequila too please, thank you!).

      ​My Love / Hate relationship with our NHS

      A couple of things have happened this week which has made me reflect on my experience with our NHS. It’s left me thinking, love it or loathe it? 
      As some of you know, it took around two years to get The Monster’s autism diagnosis – that’s pretty good, and we are considered lucky to get a diagnosis at such an early age. He hasn’t been seen by his paediatrician for 6 months and is now due a follow-up.  I am desperate to get the ball rolling on getting  Occupational Therapy and a formal sensory processing diagnosis. This will not only massively benefit him (and us) but will also add some weight for his educational needs and support, which is now urgent given we have some big decisions to make before he is due to start school in September. I have made no secret about this and have spoken to health visitors, his GP and finally on advice that it would be the quickest route, I spoke to his paediatricians secretary. She advises me to call the booking team as nothing was in the diary. This is why I started to reflect, bare with me and I will put some more meat on the bones. 

      I am super greatful for our NHS most of the time. Let me pinpoint just some of the reasons why I LOVE it:

      • I have gone under the knife four times, each time losing a body part and have received good care on (almost) all occasions.
      • We have leaned heavily on it for The Monster and will continue to, likely for the rest of his life. He has had hours of observations, consultations and tests prior to diagnosis alone
      • His 3 month old baby brother (AKA The Small One) is also reliant on it after being born with only one kidney, a poorly one at that. He will be having his first operation later this month. I will be eternally greatful to the nurses that looked after my precious baby around the clock when he was born and in neo-natal away from his mummy. The unsung heroes of the NHS.
      • We are (almost) guaranteed to get a DR’s appointment on the same day we ring. 

      BUT

      Here’s the flip side:

      • Today I made a call to chase up The Monster’s follow-up appointment which is due this month (May). I get told that he can’t get seen until SEPTEMBER as the diary is full until then. I respond that this is totally unacceptable as it should’ve already been booked and manage to get one on 31st July. The booking system is so inadequate and the DR’s are so busy that they simply do not have the time or resources to offer more slots.
      • The Monster only received his diagnosis after me chasing the hell out of most appointments. In fact, right at the beginning of the process when he needed his first speech and language appointment, hearing and epilepsy tests they archived his files rather than sending to the relevant departments. If I didn’t chase, he may have been lost in the system forever. It is worth pointing out that the Dr was mortified that this happened, they only realised when I chased and pointed out it was due to a new system they were using. They advised me to complain. I didn’t. 
      • The Small One had his second lot of immunisations this week. After the nurse injected him, she slipped with the needle and stabbed my leg leaving me bleeding. She apologied, shocked and visibly a bit shaken. I said it was OK, and genuinely was OK with it as it had only been in my healthy boys leg. It could’ve been a different story though.
      •  I had several antenatal scans with The Small One where they identified he had Renal Dilated Pelvis (a poorly kidney), fairly common and should clear up after birth. They stated on the reports they had seen both kidneys (several times). He was born with ONE kidney. Now, I’m no doctor but surely they should’ve looked for the other given that they had identified one was poorly? When I have the time and headspace to fight this, I will campaign to get their scanning paperwork changed. Hearing the words “not compatible with life” when he was only 2 days old will stay with me for the rest of my life.

      I have met some of the most amazing, selfless people working in our healthcare system and for the most part the downfalls have been to systems and procedure. But it’s also evident that these guys are busy. SO busy. I’m not going to get all political. I just wanted a bit of a vent. How about you, do you love or loathe it? 

      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. 

      …And They Lived Happily Ever After âť¤

      Like many girls, from a young age I had a fairytale vision of how I wanted my life to pan out. When I looked to the future the chapters to my happily ever after story looked something like this in my minds eye (as a very quick, rough guide!):

      • Relationship
      • House
      • Career
      • Children
      • Children leave home
      • Retirement
      • Travel
      • Children marry
      • Grandchildren
      • Children care for parents if needed

      As I got older I started ticking off some of the major chapters of my story. Life was good. I had the main ingredients for my happily ever after but then out of the blue the story changed forever. 

      So just how much can your child’s autism diagnosis change the story so much? Truth be told, we don’t know how much it will change. He is only three years old. Many, many things could change with his developments, but this doesn’t stop my mind wandering.

      Until D-Day (Diagnosis Day), I had been very short sighted with what impact autism could have on our lives. I was very much focused on the short term looking no further ahead than primary school. Now, I have considered as far into the future as my headspace will let me. These are some of the things that hang over me like a huge grey cloud, they are some of the chapters we don’t yet know about:

      • Will The Monster ever talk? – I have (I think) accepted he may not and if he does, is likely to not have the same level of speech as a typical person. The thought of never hearing my child’s voice (actual words) makes me want to weep. The thought of the frustration getting worse for him makes me want to wrap him in cotton wool and always be his voice. Obviously I can’t do this indefinitely. Even now people probably wonder why I answer for him when strangers ask him questions. 
      • What type of school will he go to? – this is work in progress. Check out some of my other blogs for information on where we are at. When we have a child we never imagine they will need a specialist school and they may need 1:1 support. 
      • Will The Monster be able to lead an independent life? Will he live with us permanently, will he require sheltered acomodation? This is one of the biggest concerns for me and it is very much the waiting game to see what the outcome will be. When we have children we teach them and raise them to be independent. We are doing this from a real young age, without probably realizing it. For example, dressing, eating etc. We are basically training them to be able to live without depending on us. So we can pack them off to university, downsize and get our lives back. Will this ever be the case for us?
      • We know that autism is a life long condition. There is no cure. When we’re long gone, who is going to be around to care for him? Another one that makes me feel sick to my stomach. How will he deal with anything happening to us and what provisions can we put in place to know that he will be OK in the event that we are no longer around? Typically you leave your children your legacy, your estate etc but this won’t be enough for The Monster. What if he doesn’t need bricks and mortar but requires the same structured routine. Who is going to know him and all his quirks like we do? 
      • It dawned on me very recently that my career is over. Or as I’ve told a few people, my life is over. Sounds dramatic but it’s hit me hard and I am struggling with this at the moment. I am ambitious. I am driven. I have so much to give. I want to be successful. I want to work. I want to provide for my family. I want a comfortable lifestyle. I don’t want to be just mum (albeit the most difficult job on the planet). I don’t want to be reliant on the state. But how can I juggle this when wrap around care / after school club likely won’t be an option. Even if it is, will The Monster cope with such a long day? When we have no support network to lean on for regular help and when a holiday club / play scheme won’t be appropriate for the school holidays. Any jobs out there that cater for people like me? I can start at 9.30am (provided we have had no meltdown at school and the traffic allows me to get to work on time), I need to finish by 14.30 (to get to the school pick-up for 15.00, based on a job being local enough to school), I will need all school holidays off. Oh, and I will probably need a fair bit of time off for appointments, therapy sessions etc. 
      • Me time / us time. Will we ever get the chance to travel as a couple again, will we ever get to enjoy just a few nights taking time out. Will we be able to retire (probably not based on the above!). 
      • There is a ridiculously scary statistic that 80% of couples with special needs children split up. They don’t make it. I couldn’t do this without my sidekick. I’m determined not to be part of that statistic but this puts into perspective the added pressure we’re under on a daily basis.

      Our story so far has taught me that you’re only ever a chapter away from your story changing forever. Having a child with autism changed ours. It is going to be full of adventures, trials and tribulations but ee by gum it’s gonna be the best book ever. 

          Never let anyone dull your sparkle. 

          I need to do this today. Let me explain, this week I have visited a special school for autistic children as part of my due diligence in shortlisting suitable schools. I have also had our first meeting with The Monster’s Educational Psychologist today. Such events are emotionally draining since there is a constant reminder that your child is different and the nature of said events tends to focus on all the negative aspects of your child. This mornings meeting alone was 2 hours of discussing what I find challenging, what my concerns are and a whole host of systems and processes that both I and the nursery need to work on to improve The Monsters communication skills amongst other things. It’s hardly surprising I left the meeting with a headache and as usual after these kind of interventions feeling a bit sad. He really is different to a neurotypical child, something I forget for the most part as I tend normalise Everything as I know no different.

          So, right now I need to shout from the rooftops some positive things about The Monster. There are obvs, a whole host of things I could choose but I’m going to try and whittle it down to five. After all nobody likes a bragging parent! 

          1). Laughing!  He has a number of different laughs that brighten up the most rubbish day. There’s the uncontrollable laugh, this one is my fave and the most spontaneous, it’s normally when he is being tickled, or when he is making you laugh. Then there’s the mischievous laugh, this is probably the most staged laugh you have ever heard. It is loud and in short bursts, often done when slamming a door in your face…because that’s hillaire! There’s the delighted squeel, where he, as it says on the tin, squeels! The sound of The Monster laughing is my most favourite sound in the entire world. 

          2). Water! He is ace at swimming. He started swimming lessons at 10 weeks old and has gone weekly ever since. Actually it was at one of his first swimming lessons that I had my first ever “proud mum” moment. He loves nothing more than putting his head under water, so he’s pretty amazing at diving in, swimming under water, collecting diving rings etc. It’s not just swimming he loves, it’s water in any shape or form. Washing up, having a shower, water play, drinking water, puddles. If there is an opportunity to get wet, he’s there with bells on.  

          3). Good manners!  He’s super polite. For someone who is non-verbal he is pretty darn good with his P’s and Q’s. He signs “Please” and “Thank you” in context. As an example, he likes to watch YouTube videos on my phone in our bed when he gets up. I will often wake up to a phone being held on front of my face and him dramatically signing please and thank you. This probably sounds minor to a parent of a neurotypical child but this is fab communication for him. He says sorry (well he gives a big cuddle) when he has done wrong. He blows kisses and he never fails to make us smile on a daily basis with the way he communicates to us.

          4). Entertaining! He provides hours of entertainment. What I would give to spend a day in the life of The Monsters head. I could watch him for hours. The concentration on his face when he is lining his cars up and pushing them around the room systematically. The way he is intrigued by how everything works and when things don’t work he wants to fix it (he thinks you fix everything with a screwdriver), his fascination with technology / buttons / cause and effect. His quirky routines and ways of doing things. He’s a fascinating little boy and life is anything but dull when he’s around.

          5). Happy! Everybody loves him. It’s clear to me that he is well liked by his peers, despite his differences. I love watching him in stealth mode when I pick him up from nursery, one of his little pals adores him and gives him oodles of cuddles and really looks out for him. I’ve never felt that he has been excluded and I believe this is testament to his jolly personality. I am super aware that this may not always be the case and I dread the day, if it ever arises that he doesn’t get invited to parties etc. Not that it would phase him in the slightest, he is genuinely one of the happiest children I have ever seen.

          So there you go, there’s five positive things about my beautiful boy. Wouldn’t it be lovely to sit in a room with people and talk about all the things he is good at doing and all the nice things about him, the truth is though we would need a lot more than a two hour meeting for that ❤. 
           

          Welcome to our world…

          Way back when my cheeky little boy was only one,  before his tiny feet had even took their first steps his then childminder raised concerns about his social awareness and his communication skills.  Never had the words “He’s hard work” been such a relief. I thought all children were this challenging, afterall I have nothing to compare him to.  Being told that he was “the hardest work out of 20+ children” on their books was music to my ears!
          Armed with concerns about how he had tunnel vision, didn’t listen nor follow commands amongst other niggles I approached his GP who then referred us to a Paediatrician.  Since then it has been a two year roller coaster of hospital visits, tests, observations and therapy sessions. 

          Today marks the last observation before diagnosis day. 

          The day we sit together with a consultant and team of people to go through in detail what the diagnosis of our precious boy is.  We have finally been told he is on the autistic spectrum (despite having known this for a long, long time but with no one confirming nor denying it), so very soon we will get to find out how this will impact on his and our lives. 

          We have already started making provisions for schooling and there will be many, many things we won’t know but it helps having a diagnosis as we will have help and support that we have otherwise been unable to access. If our journey can help anybody, then I want to share it.  

          Here is just a snippet of how life with The Monster rolls!….

          The Monster is a 3 ÂĽ year old, cheeky, happy and very busy little boy.  He can’t talk, other than to say the words car, gone and go (when he feels like it). Despite not being able to talk, he is VERY noisy!  He communicates by pointing (which happened over a 18 months  later than most children), pulling at our clothes and excitedly grunting at us.  We’ve worked hard to learn sign language (Makaton and some BSL) to allow two way communication. A challenge in itself when he makes little eye contact.  I often feel like I am signing to myself and then weeks later he indicates he must have seen me as he picks it up!  He can’t sign a lot but can say (through sign) things like “more”….you have no idea how important this one is!  More food, more playing, more food, more singing, more food, more Paw Patrol, and did I mention more food :)!   He can sign car, tell us if something is hot amongst the more basic gestures such as waving, clapping, nodding and shaking his head.  He understands everything we say.  Actually we have to talk in code and now for some things…mention raisins, the shower or van and he will be tugging at us to go to them! He can follow commands, even when out of context. He’s really quite a smarty pants considering he is non-verbal and communication is difficult for him :).


          He can not and will not walk.  

          He has two speeds, fast and faster!  He didn’t walk until he was 17 months old and boy he has made up for the small delay in not using his feet! He spins in circles and he shakes his head from side to side because he loves the feeling he gets from it. We spend a lot of time gasping in our not especially big house where he is always only millimeters away from a fall. He falls over quite a lot because he is always in a hurry…I also blame his Dad for his ginormous feet!

          Imagine a world where you can’t read emotions.
           

          A world where you don’t know if people are happy, sad, angry, upset, hurt etc.  This is how it is for The Monster.  He laughs a lot and fills our lives with happiness but he struggles to differentiate that between any other emotion.  This makes disciplining him virtually impossible and is probably the thing I struggle most with.  Of course, toddlers push boundaries, they test the water and they learn from doing this…he doesn’t learn!  He has an obsession with doors and despite one actually closing with his finger in it, they still fascinate him! Trying to tell someone you are sad because for the second time in a year they have broken your TV falls on deaf ears (he has had 4 hearing tests and a sedated hearing test and there is nothing wrong with his hearing!). Crying your eyes out because you have been pushed over the edge at a toddler class where it seemed only your child was misbehaving goes unnoticed, yelling because for the umpteenth time in 5 minutes you have asked your child not to spin on the bed because they could fall and break their neck is a game and cause for an hysterical outburst of laughter.

          Sleeping’s cheating has definitely been the case in our house for the entire of The Monster’s life.  

          His Personal Best is sleeping through for 12 consecutive nights.  We have suffered sleep deprivation like you wouldn’t believe.  I have watched Peppa Pig at every single hour of day / night. I have cried myself to sleep out of exhaustion.  I have out of pure desperation called health visitors in floods of tears begging for help.  I can honestly say I have slept less in the last 3 ÂĽ years than I did in the entire 10+ years of the party days (taking into account two girls holidays, uni and the days I used to go out on a work night until 5am and still get to work at 9am the same day!) There is nothing worse than lack of sleep. I survived months on end on 4-5 hours of broken sleep per night.  Him wide awake for 2-6 hours a night and nothing, I mean nothing would get him to sleep, despite him being obviously exhausted.  

          I’ve tried every sleep technique known to man.  

          The last three nights alone I have lost around 7 hours sleep! I CANNOT WAIT for the day he wants to stay in bed all day, when he wants to be a lazy teenager…I am going into his room banging pots and pans, demanding he gets up and plays, screaming and crying!
          The Monster loves water, he is pretty awesome at swimming and getting help with the washing up is a treat!  He loves having a wash and brushing his teeth….bet that changes when he’s a bit older! I often have to stop him drinking rain water when playing in the garden.  Any shape or form, if he can get wet, he will. It’s his “thing”, that and playing in daddy’s van!  He gets obsessed with things very quickly.  He only has to do something once in a particular way and that’s how it has to be done every time. He is all about routine and breaking that can be quite disruptive. Something as trivial as having someone new in the car with him can cause a complete meltdown, and I am currently struggling with the changes to his nursery hours which have had a big impact on his confidence in all other areas.


          The reason I have finally spoke out about this is because whilst I don’t want autism to define him…

          I don’t want it to go unnoticed.  This will come as news to friends and family members as we haven’t gone into detail with many people. If you’re one of the few that I have gone on, and on, and on to about our journey, I thank you. You are special and I appreciate your support and on exceptionally rare occasions a shoulder to cry on when things get too much! I want to shout from the rooftops if he does something that to everyone else seems no big deal…if and when I hear the word Mummy or Daddy  out of his mouth I will want to tell everyone!!  

          I want people to understand autism more and rather than being judgmental when you see what appears to be a parent not being able to control their child, be a bit more compassionate.   

          I look like the parent that can’t control my child and in honesty,  I can’t but that’s not because he is naughty, he has never done anything really naughty.  It’s because he doesn’t understand. The world is a very different place to him, and whilst most go on the quickest journey from A to B we are going the scenic route….we may go A,C,D,E but we will get to B eventually having taken in every sight, smell, twisty turn along the way, so we’re going to sit back and enjoy the ride….

          life will be anything but boring!