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Tag: #ludicrousmilo
Nonsense chatter
I wrote this last month, but today I went looking for it because I knew it would help me explain…..
The number of times these 2 try to get my attention is what is nearly breaking me at the moment. All of our adoption training spoke about how to talk to children in a kind, respectful way, but they’re trying to get my attention so often that I’m struggling to keep the kindness.
After speaking to some professionals and other parents I’ve found out that I’m not alone! Nonsense chatter comes from children who’ve experienced trauma and have attachment disorders, it’s their way of checking your still there. It is COMPLETELY DIFFERENT from kids without attachment disorders.
Someone suggested that I find an average of how many times they try to get my attention in an hour so that I can understand why I’m struggling.
On average, without Milo, the little ones say “Mum” 396 times an hour. That is 4,752 times a day. Each time they say “Mum” my thought process is interrupted and I need to start again. I have literally been locking myself in the bathroom and comfort eating my way through the chocolate because I though my feelings were petty and insignificant. I found out yesterday that they’re not.
I can’t tell you how happy I am to know what the problem is so that there’s a way forward to making it easier for me whilst still being able to nurture my babies.
The Trade Off
It’s quite common for autistic people to have a trade off after any kind of event that pushes them out of their comfort zone, often resulting in the need to recover for a few days. This is not a choice, it is a necessity. Not only does Milo get the social/emotional hangover that many autistic people would be able to relate to, he also gets a dumper truck of physical side effects too.
We’ve got some friends who run the most phenomenal charity in India, caring for or education and health care needs of children in poverty. It’s called Love the One and we are in absolute awe of what they do.
Milo decided that he wanted to raise some money for Love the One, so we had a little brainstorming session and came up with the idea that if he took some photos with his new microscope camera, we could charge people to enter and raise money for Love the One that way.
Last week, with lots of videos on Facebook, he managed to raise £110. Not bad going for a 9 year old! The following day, however, was trade off time, affecting his whole body. He was on edge all day, bubbling with anger, us all treading on eggshells trying to avoid a meltdown. In the afternoon his hands became “stingy” and wouldn’t work for a while, and then at midnight he started having a vertigo attack.
He’s had vertigo attacks, we think, pretty much since he was born. There were many times as a baby he was utterly inconsolable, but it was only when he was 3 and started to say “dizzy” that we knew this wasn’t normal and were referred to a paediatrician.
The jury’s still out as to what’s causing it.
We do know, however, that in times of stress or excitement that it causes a vertigo attack. Sometimes he’ll lose the use of his legs or arms. Severe attacks mean that he can’t use his legs or open his eyes and throws up every time he moves his head. This can go on for hours…..super scary for a little boy!
So how do you embrace life with the trade off? How do you live to the full, knowing that it will, very probably, end badly? How much living do you do whilst trying to juggle the “hangover”? For Milo, we follow his lead, embrace the fun and be there to carry him through the bad…. because that’s what parenting is about.
On a high
The last 24-hours have been amazing with Milo. A glimpse of the little boy we know so well. A little boy without fear, ridden with anxiety because of outside pressures.
Imagine, if you will, going through your day where every item of clothing, every noise and every small breeze felt magnified 100 times over. This is what happens when you have Sensory Processing Disorder. For many this would make it impossible to get through the day. This is exactly what Milo would go through and on top of that we would add in school, demands of school work, relationships with people that he didn’t quite understand. We would then expect him to deal with this AND LEARN. It is no wonder that he couldn’t cope.
Removing the pressures of school, most of the demands of life, has had the most amazing results. We are starting to see the little boy that we thought was gone forever.
The little boy who helps around the house without being asked. The little boy who helps little brother and sister off his own back. The little boy who starts thinking about how he can help others, without being prompted. The little boy whose curiosity about life and learning is returning, instead of spending 16 hours day rewinding.
This is what happens when you remove expectations, pressures and demands. We still have meltdowns, we still have problems, but to see him like this proves that we’ve done the right thing. I am so thankful that our little boy is coming back to us.
An empty cup
I’ve woken up this morning feeling emotionally hungover, drained, saddened and like a real mediocre mum.
Yesterday was a really tough day for Milo. I was going to see my Mum and gave Milo the choice of whether to come or not. Milo desperately wanted to come and see his nan but he couldn’t. Covid-19 has had a massive effect on his mental health. When we first went into lockdown he used his Go Henry card and bought over 600 plasters from Amazon. In his mind, the plasters would help keep him safe from the virus. He hasn’t left the house since lockdown was announced.
One of the hardest things about PDA is not being able to do something you really want to. He wanted to see his nan, but couldn’t. The pressure from this had a cumulative effect, he developed a vocal tic, and by last night his brain was ready to explode.
During meltdowns one of us, usually me, will stay with him until he’s calmed. Last night however, I had to back out and leave it to Steve. It’s so important that Milo has who he needs there at the time, but there also has to be a balance where I protect myself. My cup was so empty that I needed to regroup, relax and emotionally strengthen myself. I had no more to give and even though he was screaming my name and phoning my mobile from the landline continuously until about 1am, I was done in.
It’s so rare that I can’t cope with meltdowns, so unusual for me not to be there for for my baby boy, but last night I had to look after myself. This morning, however, I feel as if Guilt came bounding into the bedroom the moment I opened my eyes. Mum guilt is hardcore.
No matter how many times you deal with meltdowns, it never gets any easier. You’re left feeling weary and depleted. For the person melting down it’s just as difficult, if not more so. Sometimes, we handle them brilliantly, sometimes we need to do better. I’m learning that this is ok. I’m learning that we can’t be perfect all of the time.
I’m waiting for Milo to wake up, so that we can start afresh. I want to apologise for not being there for him, not because it was the wrong thing to do, at the time it was absolutely what I needed to do, but I want him to know that not being there was hard for me too.
So today we will snuggle down, have cuddles, watch films and fill our cups back up, ready to handle the next meltdown better. Or not.
The PDA bomb.
I wasn’t sure how to approach the PDA part of our life. If you haven’t heard of PDA when it comes to autism it does NOT stand for Public Display of Affection. PDA or Pathological Demand Avoidance is possibly one of the hardest branches of our life to cope with.
Imagine, if you will, the pressure of being told to brush your teeth too much to cope with. Imagine not being able to go out to a theme park, because you’re so excited, it has now become a demand. Imagine every tiny aspect of life becoming a demand and your brain is hardwired to say no. A big. Fat. No.
It’s taken many years to try and understand how Milo’s brain works. How we need to speak to him and what we need to say to help him do what we are asking. We’ve had make some drastic changes in our lives things that 5 years ago I would never, ever have believed we would do. No child of mine was going to stay up past midnight. No child of mine would still be sharing a bed at 9 years old. No child of mine was going to be allowed to eat a spoonful of Nutella for breakfast. No child of mine was going to be taken out of school. How wrong I was! How little I knew!
It’s so easy to be the perfect parent when you have neurotypicals kids that do what you ask and, in general, behave themselves. When you have children who have various different neurodiversities, you quickly learn to parent more fluidly than you ever thought possible.
Parenting children with additional needs is, in our experience, relatively easy. The part we have found difficult, actually impossible, is fighting the professionals to get the help your child needs. I have never known anything as soul destroying disheartening and daunting as trying to get some help for your child.
My first experience of this was at CAMHS. It had been mentioned to us by a few people but Milo might have PDA and when we looked into it the similarities were breathtaking. He ticked off absolutely every item on the PDA checklist. I had no doubt in my mind and so brought it up at the next CAMHS. The response I got what was not dissimilar to that of a plumber telling you the job was going to be unaffordable. The psychologist sucked air through her teeth and said that at CAMHS they didn’t believe that PDA existed. I was completely and utterly confused. How could PDA not exist when when it was discovered back in the 80s, there had been lots of research papers and there was a PDA society. The main reason I was confused was because when I read the the list of signs it was EXACTLY WHAT OUR SON WAS LIKE!
The list of negative experiences surrounding PDA continued. We were made to feel like we will making it up. We were made to feel that we were bad parents. We were made to feel that it was entirely our fault. We had a child who when in public could not walk due to the demand of walking, it was that severe, and yet nobody was believing us.
Our life was in tatters. Our mental health was in tatters. Milo hadn’t been to school for 4 months and we were being threatened with fines.
A turning point was going to a PDA course and listening to Harry Thompson, a young man with PDA. I immediately bought his book and devoured it it in one sitting. He helped us realise that school was not necessary. We had add a few private assessments turn on Milo and all the experts agreed that he could not stay in mainstream school. Not only were we refused an EHCP to get him into a specialist school, but the report was so unbelievably shoddy that we realised to fight it it was going to cost us thousands.
Why pay thousands to fight to get him into a school that may not have worked anyway?
We took a very long hard look at ourselves, Milo and the little ones, did lots of research and realised that, especially with PDA, unschooling was the way forward. Taking them out of school was one of the most liberating things I have ever done.
PDA is one of the hardest aspects of life that I have come across. What has been truly wonderful has been family and friends doing their research, learning about PDA and learning how they can make life easier for Milo. If you know a parent whose child has PDA please do the research. Take the time time to learn, so that the parent doesn’t have to spend time and energy explaining to you.
Professionals out there working in in the autism arena: please, please diagnose PDA. It’s hard enough living with it, let alone being made to feel that you’re f***ing insane for even mentioning it!
Milo’s rules.
For many autistic people, they see life very literally. They don’t understand the small facial expressions, tones of voice and slight nuances that most people easily learn to understand. Milo is no different. He has made us cry with laughter at times, helping us to see the innocence of his world.
One of the things that really annoys Milo, is the (very common) mainstream way of advertising things for boys or girls. If you have penis your colour is blue, if you have a vagina your colour is pink. What confuses Milo is that his favourite colour is pink. How can he use something if it says it’s for girls? Why can Lets read a book that says it’s for boys? She’s not a boy.
We’ve been trying to encourage Milo to not just sit back if there’s something he doesn’t like but to challenge it. Often this ends up with emails to the companies telling them what he doesn’t like. He has, quite often, emailed the council to tell them people who drop litter should be in prison.
Today however he’s thrilled. A Salt of the Earth spray that we often use during meltdowns used to say on it but it was for girls. To Milo this meant that he couldn’t use it because he was a boy. He emailed Salt of the Earth and they replied saying they were in the process of changing the design. Today he has seen that his favourite spray is no longer just for girls.
I’m so proud of our little boy. He knows what he likes, he doesn’t care what anyone thinks, and if your advertising isn’t inclusive he’ll email you pretty quickly!
Always hide chocolate
The shopping came and instantly Milo locked the chocolate away. The more I think about it the more I think this picture shows perfectly how an autistic brain works, especially Milo’s.
If I use this as an analogy for Milo’s brain, it shows that when things look complicated at first glance, they’re actually really simple. There’s only one padlock that’s actually doing it’s job here. Things that may seem really complicated just need to be simplified. On the other hand things that may look simple are sometimes very, very complicated. Navigating life with Milo is like being on on a raft, constantly moving, never staying in the same place, constantly having to try different things in order to keep your balance.
If you don’t pitch something right, say something slightly wrong, the volcano that lives inside Milo erupts. Sometimes. a few of the tectonic plates are bumping invisibly under the surface, sometimes you can see the bubbling. When the eruption starts, run for your life.
Like many autistic people, Milo can be very violent during a meltdown. Whilst I’m not going to concentrate on the violence it is worth remembering that an autistic meltdown is akin to a panic attack. It is not something that he chooses to do. It is not something he has control of. It is, at that moment in time, the only way he can communicate what is happening to him. It is no surprise that parents of autistic children live life on high alert, never being able to pause the hypervigilance of the threat of meltdowns.
Here’s your friendly reminder (if you don’t listen feel free to go f*** yourself) meltdowns cannot be changed by reward charts, naughty steps, or stricter parenting. At best, you may be able to smother the meltdown which will just come back at another time bigger and more ferociously. At worse you’re setting them up for a lifetime of mental health problems. So, sit back, belt up, remove the breakables, and be sure to let your child know that you are there for them.
Finally, do not make your child feel shame after a meltdown. If you do, that makes you a sh*thead, because, believe me, the shame that they put on themselves is plenty big enough. At 6yrs old, Milo asked us to kick him out of the family if he had another meltdown. Our children need unconditional love and acceptance…… even when they act like d*cks.
Life with Milo
It was pointed out to me the other day, that ever since Milo was born, he’s kept us on our toes. How true that is. Born in a fairly dramatic C-section, life has become more and more off the wall the older he gets.
I used to be such a traditional parent, with old fashioned ways of looking at things. Routine was what children needed, routine and love could pretty much solve everything (with a reward chart thrown in for good measure). Then Milo came along and blew all of that out of the water. Sleep was pretty much non existent, he was a late walker because he rolled absolutely everywhere from 4 months old. He kept us on our toes from the word go.
It was only when he started school that we became aware of some differences between him and other children. I was told he’d catch up, made to feel like an apprehensive first time mum when I tried to get help. The reality was that I’d had loads of experience with children, mainstream and special needs, and I had felt something was slightly off centre ever since Milo was born.
We’d been told that we had very low fertility and certainly wouldn’t conceive naturally, so when we did, our dreams came true. We had a fairly straight forward pregnancy, and thought that we were going to live our life in the mainstream lane of sports days, after school clubs, music lessons and our child reading War and Peace before he was 5.
Milo’s brain had other ideas.
We started trying to get help when Milo would have these horrendous vertigo attacks. Around any excitement, Milo’s body wouldn’t cope. He’d lose the use of his legs, not be able to open his eyes and during severe attacks, throw up every time he moved his head. Those with kids who have difficulties know that no answers are ever quickly forthcoming. After 3 years of trying to get answers to our questions, we were told that Milo had a 1q21.1 microdeletion.
As things started to become worse, Milo was also diagnosed with Autism, ADHD and Sensory Processing Disorder. I’m not sure when we left the mainstream lane and hopped into the additional needs lane. Maybe it was when he got his wheelchair. Maybe when he started refusing school. Maybe when we realised that his violence and meltdowns were making it impossible to live as a family. We were being pulled into different directions by “professionals”, none of whom completely understood. We begged for help and no help was given. Either way, we had to find our groove in life, otherwise Milo’s autism was going to break us.
The thing about trying to get help for your child is, you’re made to concentrate on the negatives. What he can’t do. What he can’t cope with. It’s absolutely soul destroying. Our hilarious, kind, empathetic (yes, autistic people can be empathetic) child was becoming lost in a system that only concentrates on what he can’t do. Steve and I were on anti depressants, as was Milo. Family life was utter shit. It was time to put a stop to all this bollocks.
I like pink, The Proclaimers, rewinding and chocolate
Milo aged 8
A ludicrous life with Milo. 