Autism-proofing – The quirky way!

Sometimes when things break in our home they do so in a way that makes our home safer for our autistic son. Now I’m not suggesting y’all go around breaking things to autism-proof your home but sometimes there is a silver lining when things go kaput! There are several examples that spring to mind in our home:

1. The hot tap on the sink in our bathroom is so stiff we can’t turn it on. Our son has a real affinity to water and wouldn’t think twice of using the hot tap so it’s safer if we don’t attempt to fix it. Cold washes all around….brrrr!

2. Several door handles throughout the house need adjusting. We can operate them with ease but our son can’t open them once they are shut as he can’t pull the handles down enough to operate them. There are definite benefits to cordening off areas!

3. Our front gate jams shut and you either have to kick it or body slam against it with brut force to open it. This is my favorite ‘safety feature’ as it means he can’t out of the garden whilst locking the door etc – It’s also amusing watching cold callers and people delivering menus and other such tosh trying to open it!

4. The baby gate at the top of the stairs has broke (yes we still need to use baby gates even though he is 4). It’s locking mechanism doesn’t automatically open when lifting the handle and needs to be done manually – an added safety feature in our eyes!

So you know the saying “If it’s not broke, don’t fix it?” Well on our case the opposite is sometimes true – “if it is broke, still don’t fix it!”

Do you have any quirky safety features in your home?


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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. 

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. 

    

This is Our Normal

Do you ever wonder what other people’s normal looks like? How their life differs to yours? Something you consider to be so ordinary but to others it really isn’t? For example, it wasn’t until I went to uni that I found out mash potato on a Sunday Roast was considered weird  (at least in that neck of the woods) and I thought all bathrooms had a bottle of Fairy Liquid in during the 80’s….apparently everyone else actually used bubble bath. Who knew!? 

This week I have been forced to look at our families normal just because of the timetable we have run. Here’s 10 things that are considered  absolutely normal in our house that I suspect aren’t in yours:

  1. Our children (4 months and almost 4 years old) get more post than us. Medical letters, letters regarding education and appointment letters. So many appointment letters, for both kiddos. 
  2. Both children have prescribed medication everyday (and they both love it!)
  3. Getting by on an average of 5 hours (often broken) sleep a night is considered winning.
  4. I get asked regularly what support we get. I have been asked this three times this week alone from professionals. The answer? None. We go it alone (not through choice).
  5. Changing a nappy on a baby changing unit in disabled toilets for someone whose head and torso only just fit on the unit. And he is growing, but facilities for him aren’t.  
  6. Having one child with severe autism which has an impact on every aspect of our lives.
  7. Having another child who has, since birth been in and out of hospital. He has just been invited to participate in the national Genome Project, spearheaded by Birmingham Children’s Hospital because he has a rare condition. 
  8. Using pictures and sign language are  the best forms of two way communication between us and our autistic son.
  9. Parents never having a night off (parenting) together. Ever. We have never both spent a night away from the kiddos together. I can count on one hand the number of nights I have had away (apart from when in hospital having the second).
  10. Finding things lined up everywhere.

What things in your life do you consider normal but to others really aren’t? 

    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!).

        ​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.