Posted in Appointments

Hello

Its a Monday and when I was office based it used to be my favourite day of the week but not anymore, today feel like the most Monday-ist Monday ever! In the words of that Geldof prick and school shooter Brenda Spencer… ‘I don’t like Mondays.’

Today me got to meet our new health visitor; Louise. we all know how much we rated Sarah so she does have a lot to live up to. Louise has been the health visitor for our area for 15 years which is a long time for a health visitor to remain in the profession.

She turned up in full PPE as you would expect in todays current climate, Mask, goggles, gloves and full length plastic apron. Brilliant first impression… the neighbours must think we either stink or are getting fumigated 🦨🤣

She introduced herself and immediately jumped into questions about William, I must say the sceptic in me immediately though she hadn’t read his notes but she was also referring to him and wanted a thorough picture for herself of his capabilities and behaviours.

She confirmed she will be attending next Mondays meeting about his EHCP just like Sarah used to despite not receiving the official invitation.

Before I could even ask her about the Nappy Service she told me she had looked into our request and there was no leeway with him being under four, again this impressed me that she had looked into things that we had hit brick walls with without having to be asked. This one was on my little things I had written down during the months I was unable to speak with Sarah.

She has decided to put us through to a sleep specialist to help us hopefully get William to sleep easier and keep him asleep, this will involve lots of assessments and advice before potentially leading to medication such as melatonin.
Melatonin will help most kids fall to sleep but not all… The problem is some parents believe it will help a child who is procrastinating going to bed, stop a child waking up early or having nightmares but that isn’t the case. Melatonin is usually a natural hormone that our brains release in order to help us fall to sleep. Melatonin supplements are available easily online but they are NOT regulated and may do more harm than good. If you are considering Melatonin please ensure you speak to a professional before buying something that you cant be 100% sure of what’s in it. There are concerns that because melatonin is a hormone that it may effect your child’s development when they hit puberty and it is something we will need to consider deeply if we reach that stage.

I asked her to refer us to Wheelchair services so we can get a specialised buggy but she wasn’t sure if she was able to do so. she said she would be in touch about it and… within 2 hours of her leaving our house she was on the phone advising us of who we need to speak to as only two organisations can make that referral, Occupational health and Physiotherapy but William doesn’t need any of these 😕 Its not that he can’t walk. Far from it. Its when he does walk he will drop to the floor in a floppy state no matter where he is including roads, its the fact he has no danger awareness and a buggy at times he goes floppy or has a meltdown would prevent him from getting hurt. I’ve lost count of the amount of time Dave has had to stop cars because or child is laid in the street. 🚗 we have spoken to our G.P surgery and have a telephone consultation booked next week for the doctor to decide if its appropriate for him to refer us 🙄

I’m not sure if we mentioned the questionnaires that are sent out prior to a child’s development check up but they have always been brutal to us. They focus on what children should be doing for their age group and as we are all aware William isn’t at his age group so it was a lot of negatives for us. These are called the Ages & stages questionnaires and unless I am mistaken are to identify children who may have developmental disabilities.
He will now be assessed based on the Nelson scale which focuses on the age he is at for each area rather than where he should be for his actual age. I think this will be much easier to help us understand the next steps in his development. We see little improvements and new achievements but we find that the standard ages and stages just doesn’t celebrate or include those and will continue to score zeros despite developing slowly at his own pace.

On the plus she has weighed and measured him and he is in the 25th percentile which is where he has been all along. This made me feel so much better about his eating habits as I do worry he may be underweight but apparently he is perfectly healthy… which is always good to hear.

I think because Sarah was all we had know for 4 years we held her on a pedestal and it was unfair to presume Louise would be inferior to her. She has already made a brilliant first impression but I guess I’m just skeptical due to the amount of agencies who have failed to uphold their promises but Louise seems really promising and honest and I guess that’s all we can ask for. She will only be with us until William starts school in a years time in which the school support will take over… if we get in but thats a whole other worry for another day.

As always, much love from The Buckley’s 😘 xxx

Posted in Brief updates

In a GAP

I think I have been pretty vocal about how all appointments and referral seem to go round for us but I held out hope (in vain) for our most recent one, to the nappy service 🚼

Let me put a little context to this. William is 3 years old but developmentally under a year. Due to his physical age he is the highest available size of nappies. He is not currently able to be potty trained as he isn’t aware of when he needs to go toilet or if he is he is unable to communicate this as of yet.

William also suffers from a lazy bowel and it doesn’t always function and it should so mild laxatives are often needed to relieve him of discomfort as he can go over a week before naturally being able to pass a stool. As you can imagine the build up of waiting to go natural or the explosion of laxatives puts any nappy to the test but imagine this happening when there isn’t any that will fit him 🤢

William also displays sensory seeking behaviors and unfortunately this involves a fascination with his own faeces. The will result in him smearing the contents of his nappy over himself and his surroundings and on occasion he has put it in his mouth.

On a night we have had to put him in a onesie to stop him taking his clothes off and removing his nappy. Unfortunately for us the little Houdini has now learnt to remove a onesie as you can see below… thankfully he was busted in time and put back into his clothing jail.

The look of pure joy that he is naked and put of his awful onesie

We were worried as he gets bigger what will do and we were told that there is a nappy service in our area which provides children with special needs nappies in bigger sizes which is amazing. However nothing is ever that simple.

Let me start from the beginning…

  1. Our GP sent a referral to the community nursing team
  2. The community nursing team rejected this as he is under 4
    • NO ONE NOTIFIED US UNTIL WE CHASED THE REFERRAL
  3. Our GP sent a referral to paediatric medicine
  4. The sent it back to the GP with advice to refer to community nurses or the learning disability team
    • NO ONE NOTIFIED US AND OUR GP CLOSED THE REFERRAL
  5. I chase the paediatric medicine team who told us what they had done
  6. I call the GP and they tell me to call the community nursing team
  7. I call them and they only know about the original referral and won’t accept another one as he is still under 4
  8. I call the GP and have to tell them exactly what the paediatric medicine team have told me
    • SUDDENLY NOW I HAVE TOLD THEM WHAT HAS BEEN SAID THEY CAN SEE IT ON THEIR SYSTEM
  9. They can not help as the person who deals with referral is off (I don’t think they’ve ever been in the office when I have called) but a manager of the surgery will call me back
  10. Kerry calls me and has no idea why she is calling me. She thinks it’s regarding his autism assessment.
    • I HAVE TO REPEAT THE FULL CYCLE AGAIN WHILST SHE REPEATEDLY TELLS ME SHE DOESN’T KNOW WHATS HAPPENED
  11. She is going to call our health visitor and William’s own paediatrician for help and call me back
  12. She calls back, she has left word for the health visitor but doesn’t know if she can help. She has called CAMHS (children and adult mental health services) and they can not help. She has called learning disabilities team and they can not help and she doesn’t know what to do.
    • WELL KAREN (SHE IS NOW A KAREN, I HAVE DECIDED) NEITHER DO I AND IT’S NOT MY JOB TO KNOW!
  13. She will send me some links to places that can help.
    • DO YOU KNOW WHAT SHE SENT ME… A LINK TO A CHARITY SHOP AND A SITE TO SUPPORT ADULTS WITH AUTISM. SO FUCKING HELPFUL!

I found it hard not to cry or be angry whilst on the phone with Kerry/Karen and I’m sure she could hear the break in my voice when I asked her ‘what are we supposed to do now?’

And that is the question, what do we do now?

We can’t be the first parents who have come across this, we can’t be the first to be in this situation. What happens when you fall into the gap? Do we just stay there for 8 months and have a bare bottomed child or tie a carrier bag to his waist?

If I failed to change and clean his bum for him when he was physically under a year old then I would have been classed as neglectful but what about now? He isnt physically under year but developmentally he is still in the same place. Am I being neglectful? Or are the services in place being neglectful by allowing this?

Posted in Autism In The News

Back to the pound… part 2🐶

MYKA STAUFFER! The more I read about this woman the angrier I get. How could she give up a child like he was a stray dog?!

If you haven’t read our original post on Myka Stauffer here it is

Back to the pound 🐶

I have always judged people who get a puppy or dog and decide to take it back to the pound. I am completely aware there are 100% valid reasons in some cases but it always devastates me. You promised that little furry guy a new home, a good life and to love them forever… So […]

She implied to the word that she had ‘re-homed’ Huxley to a new mommy but turns out that apparently Huxley is in the US foster care system! And let’s face it even here in the UK we haven’t heard great things about that system. This means his current situation and new mommy may not even be permanent. Another traumatic upheaval for a little boy who deserves so much more. There is even rumour spreading round the internet that the re-homing was less official especially since the state of Ohio have announced his in not in their custody.
When a parent (and I use this term loosely) decides they can no longer look after their adoptive child they go through an official vetted process called adoption dissolution. As it was Myka who used the term re-homed it may be that the process was not done officially and that they used the wildly criticised and unsafe underground method which is called… you guessed it… Re-Homing!!!

I have re-watched the video announcement, because you know, I felt my blood pressure wasn’t high enough and I just wanted to torture myself. She states in the video that the doctors told her he needed more, implying that they told her he needed re-homing.

She then discusses this “secret” about Huxley and how they can’t discuss in detail for his privacy and in fear of messing up his future? Well I’m sorry but they’ve shared every aspect of that child’s life including the fact he has bitten and pinched his siblings. By saying this repeatedly in the video it is implying that it is Huxley’s fault that she gave up on him. Including a video of him having a meltdown.

In a comment on one of her videos she also states Huxley wanted to be re-homed and constantly chose his new family instead of the Stauffer’s. He also apparently signed and showed lots of emotion to show he wanted to be with them. Let’s also bare in mind that Huxley is non verbal and only has limited use of signs.
There is no way in fucking hell he would be able to knowingly agree to or want this let alone tell them he wants this.

Obviously this was everyone’s fault but theirs! It feels a little bit like the blame game. There full video about re-homing Huxley wasn’t even about Huxley but instead all about Myka just like all her other posts about their kids.

This post has resurfaced and people are slating her for it and I despise myself for this but at the time of writing this she was asking for guidance and it’s not fair for people to use that against her.
William, as you guys will be aware is really food orientated to a degree in which it is obsessive. He loves food and doesn’t understand the difference between his food and anyone else’s. I noticed in one of Myka’s videos that she was using treats to help Huxley learn signs; this is a method our key worked advised us to use to help William make eye contact. Unfortunately as soon as William sees the food he goes into meltdown even if he doesn’t want to eat it.

There are numerous other theories out there as to why Huxley was re-homed however based on some footage which has surface I’m beginning to think he should have been removed from their care before they gave him up. There is footage of Huxley showing his hands taped so he is unable to suck his thumb. I wonder if they did this to their biological children.

Babies have natural rooting and sucking reflexes, which can cause them to put their thumbs or fingers into their mouths — sometimes even before birth. Because thumb sucking makes babies feel secure, some babies might eventually develop a habit of thumb sucking when they’re in need of soothing or going to sleep. This can be used as coping mechanism.

Thumb sucking for autistic children can be stimming behaviour, stimming is short for self-stimulating behaviours. It is also known as “stereotypical repetitive” behaviours.
Therapists class stimming as a protective response to being overly sensitive to environmental stress. For example, a child starts to flap his hands when he is in a noisy shopping centre.  Stimming is less reported when a child is engaged in activities that they like. In this case, stimming is recognised as an activity to occupy them while they are bored. Stimming is also viewed as a form of cause and effect play.
One of William’s stimming behaviours includes sucking on clothes tags, we purchased something amazing for William so that his hands could be free for him to explore the world around him. Its called a Chew Buddy. Link below for you guys to check them out.

https://www.amazon.co.uk/Chewbuddy-CBA81RAB-Pack-of-2/dp/B00KLDO5PW/ref=sr_1_1?dchild=1&keywords=chew+buddy&qid=1591114956&sr=8-1

TheKillerDoll on YouTube discusses how it is blatantly obvious how they used Huxley to boost their channels and how they treat him differently to their biological children. Check out her video here. https://www.youtube.com/watch?v=IVcdwG17Rhc

The Stauffer family don’t seem to be leaving the headlines any time soon, especially as more and more skeletons are falling out of their closest, the YouTube community are turning against them, their sponsors have cut ties with them, their subscribers are dwindling and now at 706k, she has been caught out buying Instagram followers, I’m a YouTube novice so I wonder if she has bought viewers too?

Posted in Emotions

I F***ing hate you

Its nights like these I really wish autism was a physical being so I could kick the shit out of it. I fucking hate you autism you son of a bitch!!!

Its 11:30pm and William is still awake. He is calm and comfortable watching TV in his room. Before anyone jumps on the too young to have a tv in his room please remember that the only thing that can soothe William is the wonderful invention that is BabyTV and even then that’s only works some of the time. Could you imagine my neighbours during his frequent 4am screaming fits without it?

A little while ago it was a completely different story. William had spent the last half an hour or more hitting himself. Believe me it felt like a fucking lifetime. He doesn’t have a massive amount of strength in his arms so one little slap wouldn’t necessarily hurt anyone but he continuously slaps his stomach or legs with both hands until they are red. It’s really difficult to watch and if I try to restrain him he will lash out and bite me or become even more upset. And believe me when I say this he has the strength of a pitbull in those jaws.

Its these moments in which I feel like a huge failure as a mother.

I have tried everything to pull him out of these self harming states but nothing works so I tend hover in the hall or in his room and try to distract him but often just watch him and cry.

It makes me feel like an absolute failure as a mother. I’m supposed to protect him when someone hurts him… what am I supposed to do when he hurts himself?

The worst thing about this evenings episode was the reason he was hurting himself, it was something as simple as needing a poo and then the discomfort of needing changing afterwards. This has never been a cause before tonight and he is on medication to help him go but for some reason tonight it was an issue for him.

I need someone to blame. Someone to shout at. I write often about accepting that we are not to blame for William having autism but it was easier when we did think it was us because it was easy to direct hate at ourselves.

Who do I hate now? The diagnosis we still don’t officially have? The genetics that he may have inherited? The fluke that may have caused it? God? I just need something or someone to be mad at! I just need a reason… Why?

Posted in Emotions

The Baby Blues?

Postpartum depression and anxiety that 11-20% of women experience is not at all the same as the more commonly experienced ‘baby blues’ 80% of women experience for a few weeks.

Judy Dippel, Author of ‘Breaking the grip of Postpartum Depression: walk towards wellness with real facts, real stories and real god.’

I make it no secret that I am not a naturally maternal person and I work really hard to ensure I am the best Mom for William; the kind of Mom he needs me to be but I wont lie it often feels like i’m trying to roller-blade up a mountain ⛸.

It took me 18 months to admit I was struggling as people often referred to some of the feelings I had as ‘the baby blues’. It took me a long time having these thoughts and feelings building up for me to tell anyone and even then it was practically forced out of me in the most inappropriate way possible… A meeting at work 😳

Let me start from the beginning about my journey through trying to conceive, pregnancy, labour and beyond…
We agreed it was time to start trying for a baby about a year before I fell pregnant. We quit smoking and tried to be healthier. I spoke to my doctor and agreed to come off my medication; I have a neurological disorder called Trigeminal Neuropathy and the medication I was on at the time was linked to birth defects so it wasn’t worth the risks.
Every month my period came like clockwork ⏰ and every month we felt great loss as if we had lost something that wasn’t even there to start with. I’m not going to sugarcoat it but I think we both blamed ourselves. Why wasn’t my eggs working? am I infertile? I know Dave felt very similar about his swimmers too. This year of trying was constantly talking about how perfect our child would be and all the things we were looking forward to.
Monday 17th June 2016; I felt pregnant but had done every month so wasn’t holding out too much hope. I didn’t even wait for Dave to get home before I peed on the stick but there it was… that extra line we had been praying for🤰🏻

Pregnancy wasn’t easy; I had several factors which placed me on the high risk list and an induction was discussed from almost day one… There flew my plans of a drug free natural birth🕊
As the weeks ticked by more and more things went wrong leading to more appointments, more medication and more worry.
I left work officially on February 3rd 2017 to take my remaining leave before my maternity kicked in on the 6th March. We nested and cleaned and prepared the house for a whole tribe of babies even though we just had the one – Both of our dads are twins (not together obviously!) so at every scan I asked them to check there wasn’t another baby hiding 👶👶
1st of March I had my final consultant appointment. They needed to induce me asap to get William or Barry as we had nicknamed him (his uncle Jim still calls him Baz 3 years later) The consultants exact words were “when would you like to have your baby?” OMG! Obviously since they had driven it in to us how important it was for him to be out asap we said as soon as possible, We were booked in for Tuesday 7th March 2017. Our baby would be here in a week. 😊

Only that wasn’t quite the case… your consultant tells you what he thinks should happen and why but he doesn’t tell you if it is possible or what kind of state the wards are in. Thanks very much Fatima Allam for building your birthing suite for future labours but for me at this point it was a massive fucking inconvenience!
The day arrives and we were told to bring our hospital bag… Our appointment was 6pm and no one came to us until nearly 7:30pm. We didn’t need our hospital bag; they wanted to try something called a Foley Bulb induction.
I wont go into the gory details but it didn’t work and we were sent home at 2am and told to come back… with our bag at 9:30am the following morning. They wanted to try the ‘Propess’ Pessary. 24 hours under close observation. Nothing happened and i’m sat on the Maple ward with other Mothers popping out their kids left right and center despite the fact I have been there longer! How fucking inconsiderate of them! Then came the tablet pessaries and the long wait for my waters to be broken. Not to mention the numerous stretch and sweeps (Dave kept calling these scratch and sniffs 🤮) It got to the point that I didn’t believe the labour ward actually existed until my 8th day of trying to be induced… My mother had visited on day 7 and like the tornado she can be (to which I am very grateful)told them exactly how badly this was as no one was telling us anything and we were both just a wreck. It was so important for them to get him here quickly but no one was rushing. I was scared something would happen to William or to me. I wrote a letter in case i wasn’t around. One to Dave and one to William; you know with the usual. Why I fell in love with Dave and what I needed from him in my absence. A bit dramatic I know but it was how I felt.

Then day 8 arrived and by 6:59pm so had William. Lots of pain, crying and a lot of help from the surgical team but he was here. By the time I was moved to a ward it was time for Dave to go home as they didn’t let dads stay back then… I was not ready for this. This tiny little bundle cried for what felt like all night and I was in a shared room. The anxiety of this crippled me. I was awake all night holding him telling him every family member I could remember and their personality traits.

The love I felt for William was instant from the moment we fell pregnant but my life was changing so much, I wasn’t me anymore or the person I thought I had been. Work had been my life since I was 17. I had worked full time and made my way up and honestly loved my job, I would stay late, arrive early and log in from home. All my friends were there or so I thought. I always remember a conversation with my sister about how people had vanished from her life when she had my niece. I wouldn’t happen to me (insert eye roll here 🙄) But she was right… I hate it when that happens. People I spent every day with for years and nights out, boozy lunches were suddenly too busy to text. I’m not going to lie it fucking hurt and I was lonely.
There was something about Williams development that just didn’t sit right. It was OK for me to think it but if anyone mentioned anything I would become defensive and justify his delays. Thinking it was one thing but admitting it is something very different. I hated being on maternity leave, I was itching to get back to work and some normality. Some adult conversation.
Then in the November I get the call… my office is closing. My job is at risk. AGAIN! It didn’t just effect me but my mum also and so many others. I didn’t want redundancy. I had just had a baby. I needed flexible hours and a steady reliable income.
We were saved! the company I work for now was bringing us in house. I felt so relieved and happy but there was just something that made me uneasy. A deep seeded worry that I couldn’t quite shake off.
I returned to work in January 2019 and felt so out of my depth doing just 3 days but it wasn’t possible to do any more because we had no childcare or the funds to send him to nursery at that point. I couldn’t remember anything and there was no refresher training or brief about what had happened in the last year. Nothing. Everyone was trying to prepare for the move and I felt lost. What was once my world was now somewhere I went where hardly anyone knew me so I had no one to talk to. No DSE equipment for my bad back as someone had taken it whilst I was on maternity and lets face it, the company was closing us down. It wasn’t going to buy me equipment for the last 2 months.

My last day at my office was emotional; it felt like the end of a massive part of my life. My mom worked in the same building so on bad days I could go and vent or cry to her but not anymore. Hell i would even miss the mold on the canteen wall, the windows that wouldn’t open and the suspicious stains on the carpet.
The new office was beautiful, so modern and clean. It was only 4 years old and made me feel proud to work in a building like that but it wasn’t home; Its crazy because there were people there in the same situation as me and I just plastered on a smile… ‘this is great’ ‘yes William is beautiful’ ‘no don’t worry i’m fine’

Fast forward a year ⏩⏩⏩
A year of denial about how I was feeling, Fake it till you make it… I was under performing in my job, I couldn’t focus on almost anything so I wasn’t functioning at anything particularly well and have so many dark thoughts running around my head… Would William be better off without me? Am I the one that has caused whatever the problem is with him? how can I do my job in 3 days? Why don’t my team respect me? Why am I so lonely? Why doesn’t my child love me? why do my colleagues seem to single me out? What if our landlord follows through with his threat to sell the house? What will we do if we end up homeless? What if they take William away from me because it’s my fault? What if something bad happens to Dave? what about Big Nanna? would William be better without me? would he?
Have you ever been taken into an office and told your shit at your job? actually no that’s not what was said but its what it felt like at the time. I was forced in a little cloakroom style office to face some things… some things I hadn’t spoken about before. And with each irrational sentence that I sobbed, I felt a tiny bit lighter. That night my boss called me at home to make sure I had told Dave how I felt and that I was going to the doctors… Yes and yes.✔✔

I didn’t know what to say to the doctor and spent a fair amount of time just sobbing and telling him I didn’t know what was wrong with me but he did… Postnatal depression and anxiety. Too far gone to see a councillor. That wasn’t what was said but he recommended drugs for a quicker effect; I knew I needed to say yes as I had to do something as soon as possible to prepare myself not only to be able to function in day to day life again but for the fight I would shortly have for William.
I ended up on anti-anxiety medication and anti-depressants and it hasn’t been an easy road as they make you feel that you’re OK when your not so when I first broached the idea of coming off them I though I was ready but was given some poor advice by another doctor and took a deep crash back to despair.

That was over a year ago now and I’ve slowly gotten to a place where it is time to start coming off the tablets. I haven’t had to take any anti-anxiety tablet in a long time. Work is work; I am in a new job that I thoroughly enjoy and I am away from aspects that had helped me spiral but it isn’t my life. It is just a small part of it; Its my little 3 day break from my real life. I go to work on a Monday (my favourite day of the week) and my last shift is on the Wednesday and then I switch off and i’m done… well at least more than I ever was previously. We have moved house to one that isn’t falling down around us and it’s more of a home to us than the other one had been in 7 years and as you are aware we have accepted and admitted that William has additional needs and delays and things have been put into place for William to help his development and I am fighting tooth and nail to ensure he gets the support he needs going forwards. I am now a ‘Momma Bear’ and can be fiercely protective about William and his needs rather than sticking my head in the sand.
I am nearly off the antidepressants all together… 1 half dose twice a week, then going down to once a week and then i’m done.

I’m not sure why I felt the need to get this down in writing. It’s not really part of our ‘Journey onto the spectrum’ but it was a big part of leading up to this point. Its a part of me.