The Love of A Brother.

Increasing the size of your family is one of the biggest life changing decisions anyone takes. Deciding to increase the size of your family when you already have a child with special needs, in our case nonverbal autism is an epic decision. We already live in a challenging world, a world of unknowns but bringing another baby into the world was delving into the biggest unknown we have ever faced.

Whilst the future is uncertain and welcoming a second child with his own health conditions has been at times completely overwhelming, one thing that is a clear certain is the benefit our 7 month old baby has had on our 4 year old autistic son. For the benefit of this I am going to narrow it down to just 5 key reasons.

1. THEY BOTH ADORE EACH OTHER:
Gotta be honest, this wasn’t clear from the get go and the day we brought a baby home our four year old took hostage in his room and refused to come downstairs. Uh oh, what have we done!? It has been a slow burner but it is obvious the adoration for each other and their bond gets stronger all the time. How do we know? Their eyes follow each other around the room and their faces light up in each others presence. The baby has to come everywhere with us and has his own personal protective bodyguard if anyone else wants to coo over him.

2. BABY BROTHERS HAVE SUPER POWERS:
Bumped your head? Snuggling into the baby will make you feel better. Can’t figure out how to rewind your favourite singing parts on TV? Pass the baby the remote and he has it covered. Something broken? Hand the baby your toy screwdriver and broken toy and he will fix it in no time. Sneakily took some crisps out of the drawer without Mum and Dad knowing? Give the baby the packet and he will open them for you. Obviously we know that a seven month old can’t do these things but it is utterly adorable the way the four year old thinks he can do just about anything.

3. SHARING IS CARING:
Sharing things is something that doesn’t come easily for our autistic boy. He is protective of his toys and trying to persuade him to give you one of his raisins etc is almost certainly a no go. Yet, he will do all of this with his little bro, he actively shares without needing to ask. I imagine this will change once he is mobile and wanting all of his toys! Sharing activities like dancing is the best and source of lots of laughter and all around happiness.

4. RECOGNISING EMOTIONS IS BECOMING EASIER:
A typical autistic trait is not being able to read emotions. Our four year old really struggles to differentiate between all emotions, often finding people crying absolutely hysterical. However, he is starting to recognize when the baby is grizzly and will often just go and sit with him and stroke him. He will get him his dummy if he cries and he definitely seems to recognize the happy gummy smiles and squeals. If he is recognizing these emotions in him, then hopefully he will pick up others emotions and body language too.

5. THE FUTURE IS EXCITING:
In our experience having a baby has had such a positive impact on our four year old and we are so excited to watch their bond grow as they both get older, with mobility and first words looming it will be interesting to see if these have any impact on his progress.

There we have it. We have an absolute zero pressure policy on their relationship and will go with the flow with how the future pans out. We celebrate the tiniest of achievements and we don’t dwell on the imperfections. We might not be your typical family but it’s so true that love needs no words.  

School Runs and Shopping Trolleys
Advertisements

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

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. 

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.