Posted in Brief updates

Let’s have a catch up

I have a little notebook that comes with me to all of williams meetings, I use this same notebook to jot down ideas of posts if something has happened or if I am feeling in a sharing mood. Quite often these ideas and thoughts don’t come into fruition so I thought I would put together a little catch up post of all the things I have yet to fill you in on.

So here is a little summary of what is to be included in this piece.
* William’s birthday
* School allocations
* Nappy service
* Impaction
* Big Nan

Williams 4th Birthday!

How is my little 8.8lbs baby now a four year old?! I swear to god I have just blinked and missed a few years. I’m sure I am not the only parent who feels this way but it seems like time has flown by. I can’t be really surprised as we are dealing with school allocations and that doesn’t happen until they reach this age but holy shit he is now 4!!!

I got some funny looks and questions when people asked me how we would be celebrating his birthday. As many people know William struggles should his routine change drastically so my plan for his birthday was to ignore it… not completely but to protect the main structure of his routine. He woke up the morning of his birthday like any other Monday. His dad came to do the nursery run and the house remained as normal. No sign of birthday regalia at all.
He ate his breakfast and went to nursery in his amazing birthday T Shirt (one of many 🥰) made by his Auntie Debs.
We sent a Curly Caterpillar cake from Tesco for him and his friends to share in the sunshine room. No one tell M&S! #FREECUTHBERT 🐛
Whilst he was at nursery his dad (yes we are still coparenting) and I set up the living room with his gifts, card and balloons for him to come home to. I even cooked him his favorite tea which was a full roast dinner with all the trimmings! We had decided to celebrate after nursery so the change to his routine wouldn’t throw out his full day and cause his potential upset at nursery and although people thought it was mean, we found it actually worked really well for William and is something we will look at doing going forward. He came home, explored the living room, picked his favourite new toys and then ate his dinner. It was lovely to see him so calm.

Presents this year were amazing as our friends and family understand suitability and what William classes as high interest. I think the most amazing surprise was a handmade busy board from his uncle Jim. William immediate fell in love with all the fiddly bits and it has sat in the living room ever since for him to play with.
Every year I usually make William a cake but this year I purchased a premade ‘Hey Duggee’ cake and as you can see he was quite happy with it and ate too many pieces to count 🍰🍰🍰🍰 although I made sure his dad and I got at least one piece each.
We had a few nice doorstep visits from friends and family which really made the day special as we hadn’t seen them in such a long time. #covidsucks

School Allocations

I have written a lot about allocations in other posts and on our social media pages but I just wanted to include a little summary of what has happened so far…

  • February 15th – William was not considered for a special school place but may be considered during the moderation for his EHCP (highly unlikely)
  • March 2nd – Moderating should have taken place but didn’t 🙄
  • March 15th – Moderation went a head and no special school place given.
  • April 16th – Mainstream allocations released.

William did not get into his first choice of mainstream school… because why would he. They like to make things as hard as possible after all!

I now have to follow the appeal process which is due in on 21st May. This shouldn’t matter as I should be able to name our chosen school on his EHCP but the SENCO advised we should go ahead with appeal to cover all our bases. This doesn’t fill me with confidence when the system has let us down so many times already 😥

The Nappy Service

As I have mentioned previously the nappy service is available for children who have reached the age of four which meant that when William needed them they were unavailable to him until he turned 4. We were incredibly lucky because the amazing Essity stepped in and provided us with nappies until the service could be applied for. This saved us hundreds of pounds and lot of stress and we are so grateful for their help in what felt like a time we were forgotten about and fell into one of the many gaps in the system.

On Williams birthday his health visitor put the referral across and we now have the service in place, first delivery pending. The only issue I encountered once we were referred to this service was that we had been sent a certain nappy which was a type the service also use, ideally i wanted to remain on these as I knew the sizing and the fact they could hold up to Williams movements etc but apparently its a bit of a postcode lottery and because we are not in the East Riding we are not eligible for that brand 🙄 I’m not even sure why that matters but aparently it does.

The lady that called me was brilliant, she understood I was working and may have to dip in and out of the call. She went through many questions with me and it was actually a pleasure to speak to her but what really made things better for me about how I was feeling as a parent was this message…

I needed this and it made me cry 😭

Impaction

Warning this is about poo! 💩

One thing that came to light recently as a follow on from the nappy service call was that William may have an impaction in his bowels, we are unsure if this is just nature or if it is due to the many things he eats which are not food. I mean it was only the other day his dad had to pull carpet fibres out of his bum 🤢 I’m so glad that was on one of his dads days 🤣

They believe his problems going to toilet are not just because of a lazy bowel but because there is an impaction which hasn’t cleared and everything else is adding to it or coming around it.

We have been given additional Movicol and Laxido to try and help it clear but, if it doesn’t i’m not sure what will happen next other than the fact we have to go back to the doctors to check what our options are.

I am trying not to google or freak out but this is me after all so check back in shortly and I may be weeping at my desk!

Return of The Big Nanna

184 days… 184 long days!
297 days in total… almost a quarter of Williams life without his Big Nanna.

I don’t know how soulmates work, I thought I did but their bond proves me wrong completely; she is 91 and he is 4 and they just light each other up. Big nan is suddenly young again and William is suddenly capable of interacting on a much higher level, he sees her and I mean really sees her. He finds comfort in his Big nanna just like I did in her when I was a child. To him, she is home, safety, love and lots of snacks.

Family 🥰

She has had her vaccines and as lockdown is lifting, things can slowly get back to normal and our normal is seeing Big nanna every Sunday for snacks and snuggles.

I should be back on top of posting now so I will hopefully be back to post more regularly going forward.
As always please remember to subscribe down below.
Much Love M. x

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Posted in Appointments

Transition meeting Pt. 1

I think terrified is the best way to describe how I am feeling about William transitioning into ab school setting from his nursery. The fear keeps me awake at night as I toss and turn thinking about how he will handle a new environment and different levels of support. When I think that his days at his amazing nursery are numbered it genuinely makes my sad.

This was William just over 2 years ago on his first day at nursery, he looks so young and baby faced. He loved it whilst I sat at home and cried. I didn’t think anyone could look after my child as well as I could but I was wrong… Over the last 2 years they have helped William and myself in more ways that I could have ever anticipated, they helped me understand some of his educational needs and pushed us through the right channels for support, funding and diagnosis. Thinking that his last days are slowly coming upon us brings tears to my eye, not a single tear or quiet tears but messy heartbroken sobs. I know it is almost time for him to continue on his educational journey but i’m not quite ready to say goodbye to them 😭😭😭

Today was part one of the transition meetings to get William into the right school with the right support. Unfortunately we still haven’t received his draft EHCP however we are aware that he has been banded as intensive for the level of support he needs which is the top level. Below are the definition and school needs for children branded due to Speech, Language and Communication difficulties as Intensive or severe provided by Hull Local Offer. William easily fits into the ‘Intensive’ category however after discussing with his SENCO; Lisa, he would standardly have been placed in ‘severe’ had he have been going to a specialised school as his level of support would have been less within that environment.

LevelDescriptorsCurriculum needs
SevereVery severe expressive and/or receptive language difficulties of a specific nature, which are significantly impacting on progress and social, emotional, and behavioural development. Child/young person of broadly average ability.
or
child/young person with a very severe communication disorder, which is significantly impacting on progress and social, emotional and behavioural development.
or
child/young person’s ability to receive communication is severely limited due to a language disorder or a profound difficulty in interpersonal interaction.   Child/young person may have emerging mental health difficulties and/or experience a high level of anxiety in most school situations.
Intensive programmes to develop understanding of language, expressive language, speech intelligibility and/or social communication skills. Intensive programmes to help the child/young person develop alternative or augmentative means of communication to a level commensurate with level of ability. Differentiated programmes of study to facilitate interaction with the curriculum either by oral, signing, symbol or written systems. Programmes of support to enable the child/young person to become competent users of communication aids / technology.  
IntensiveProfound speech, language and communication needs as a result of which a child at school entry age is only likely to function below the 12-month level in relation to these skills.
and
child/young person uses primitive gestures, a few signs/symbols and/or has almost no spoken language.
and
child/young person is unable to form words or make adequate use of augmentative systems of communication.
and
child/young person has severe limitations in the expression of intentional communication. or child/young person has significant physical difficulties, with less cognitive impairment, which require voice output communication aids.   The child/young person may have an accumulation of layered needs, which could include mental health, relationships, behavioural, physical, medical, sensory, communication & cognitive needs.
Child/young person needs very early (infant) developmental programmes in relation to language/communication. Child/young person requires intensive training to acquire the limited use of means of alternative communication systems (e.g., signs/symbols systems). Child/young person requires intensive programmes to develop pre-lingual articulatory skills (i.e., formation of sounds in words). Child/young person needs programmes of work which recognises their high level of dependency in relation to language and communication. Intensive programmes of support to enable the child/young person to become competent users of communication aids / technology.  

The guest stars in todays transition meeting
* Lisa – SENCO
* Jenny – Specialised school representative
* Zara – Williams 1:1 support from nursery
* Chris – Head of chosen mainstream school
* Me – Mom, stress head, emotional wreck etc

For those who has tuned in to my blog before will notice Val isn’t listed as Williams 1:1 support, sadly Val decided to take partial retirement which means she no longer works Williams days. This did make me very sad as Val is amazing with William (Please feel free to remember when I pitched a fit because he left Linda to go to Val 🤣 I soon ate my words about that one) however William loves Zara and she has been in the sunshine room with him all along so i am quite happy with the change and happy for val to have some well deserved rest.

I got to meet the head of our chosen mainstream school today and she seems very similar to the head teacher who was in place when I attentended in the 90’s. She asked me to tell her about William, nothing specific but my view on what he is like as a child. I got a little emotional explaining how loving he is in his own ways but it was nice to be asked, not about his development or what he can and cant do but about how he is as my son.

Our chosen mainstream has two classes for Williams age group with each having 30 children, he is currently in a setting of only 8 kids so the transition may be a big shock for him, the plan is currently to aim to start this by the autumn term which is October/November rather than the standard September term. It will be easier for William to adapt to his new setting if he is eased into it slowly, starting out with shorter days or weeks which are to be agreed once his EHCP is in place. When this finally does come through I can name our chosen school with the view of a specialised setting in the future (ideally the following year🙏🏻)
On top of the EHCP naming I am also following the standardised appeal process to cover all bases to ensure we don’t have another crushing disappointment like we did when it came to specialised school allocations but i’m not holding my breath. Any parent of a child with special needs will tell you how fucked up the system is and how you get used to being let down by a system that is supposed to ensure your child has the best possible care.

As always I will keep you posted on what is to come and stay tuned for a catch up on other things that have happened within the last few months 😊

Much Love M.x

Posted in Emotions

Helter-Skelter

I think now is the time to talk about the past six months, this is not going to be a William centred post so if you want to tune out now that is fine. This is about the fight between the two sides of me. The side that six months ago was broken and wanted to curl up and die and then the side of me that needed to be as strong as two parents combined.

As most people will most likely agree with; heartbreak is one of the worst pains you can go through, you can’t take paracetamol to take away the pain, as only time can do that, but even though you feel time is all you have, you also feel that it isn’t on your side.

It may seem dramatic, but I felt like I was dying. Like my heart would not keep beating and I felt ok with that. That the pain would go if that happened.

Then there was a side of me that needed to be productive, I needed to get the house cleaner than it had ever been before, make sure my finances were in order, I needed to make sure William’s routines were protected, that he was comfortable and was not hurting like I was. I went into what can only be described as Stepford mom mode.
Between William waking up in a morning and going to sleep on the night, I was perfection; cooking cleaning, messy play and all the things in between. Smiling until my face hurt… ‘fake it until you make it’ so to speak.

Bedtime would roll around and then it was time to remove the mask, time to have my cry about all the thoughts I had pushed aside during the day, time to be broken.

The part of me that belonged in Stepford continued to make what I felt were the right decisions regarding him and tried my hardest to include his dad in these also.
The other part of me that was responsible for me, made some pretty questionable decisions and its now time to snap out of it but before I can do that, I needed to admit that I hadn’t been looking after my own health both mental and physical as well as I should have been.
I thought I would fall apart much more than I did, that I wouldn’t be able to go on but i’m stronger, healthier and much wiser. Divorce was never something I believed in, naive; I know, but now I am looking forward to starting the next chapter of my life. I am looking forward to finding out what is out there for a fat, working, single mom who may or may not have trust issues for me 🤣.

I have had a brilliant support network around me but only I could pull myself together and get off this helter-skelter slide and stand up tall again, albeit a little wobbly but here I am standing and ready to embark on my next adventure and new challenges
Speaking of which during May I have decided to partake in the 100 miles in May fundraiser to help raise money for the mental health charity Mind, I am asking that if you can spare anything, please donate as all funds go straight to the charity and its such a wonderful cause… https://www.facebook.com/donate/759292808292224/

Follow this link to donate to the Facebook fundraiser 😊

Posted in Appointments

Moderating in time

Today was the day in which I should have had an update about Williams EHCP, I should have been able to figure out what the next steps are going to be for Williams education and find out if that slim chance of a special school allocation was within our grasp.

However today was not that day. No days are the days they should be and I an beginning to learn this… I need to prepare myself for these things as they happen all the time and yet continue to knock me for six. As parents we shouldn’t be continuously let down by those who are supposed to support our children and adhere to timescales laid out by themselves.

The EHCP has not gone to the moderators… Still! This is because the medical report needed and the Speech and language report have still not been received. These should have been submitted by 15th of February and its now 4th March 🙄😡

So now we are back in the waiting game… Next week or the one after. Who even knows?!

Posted in Events & Holidays

Yule never guess what 🎄

Forgive the horrendous pun 🙏🏻 but I couldn’t resist.

What can I say about Christmas 2020? What can I say about 2020 in general that hasn’t already been said be everyone? I think this year I had more understanding of what William could and couldn’t handle at Christmas which made it easier for me to make sure he wasn’t overwhelmed.

Each christmas eve I have alway reads William ‘Santa comes to Hull’ I’m not sure why I made it a tradition as it wasn’t one I had as a child but I felt it made it a little special knowing he was on his way. This year William grabbed the book from me and and decided to show me it before I read it… Maybe one day he can read it to me 🥰

I’ve been poorly recently with a mega cold 😷 (100% NOT covid as I had a test) and an injured scapula so the preparations for christmas have been hard physically on top of the usual picking up and carrying William and then the emotional toll of it being my first Christmas alone as a single mom which… If I do say so myself I totally bossed it 💪🏼

Every year without fail we all have always had christmas dinner at my mom and dads house. Christmas isn’t christmas without my mom yelling at my dad to get out of the kitchen or telling us there isn’t room for all of us in the small room, my niece eating more than her share of after eights and my dad hovering round with a bin bag asking if anyone can take it home 🤣 and even more so… it isn’t christmas without big nan. The first lockdown kept us apart for 113 days… so far on this teir 3 we are at 66 days and counting. Thats almost half a year! 😲
I know the rules for christmas day were relaxed but it wasn’t fair to potentially put anyone at risk with William going to nursery, his dad visiting him but working, my sister working and my niece at school… we all felt we would rather we were all here next year to celebrate properly (I’ve also told my mom she has to cook christmas dinner for us all once its safe to do so even if it is summer 🦃 BBQ turkey will not be accepted)

William came down christmas morning and started playing with some of his toys and opening some gifts at his own pace. When this got too overwhelming for him, he retreated upstairs and laid on his bed floor for a little bit until it was time to leave the house. My sister thankfully allowed William and I to go for dinner (the covid test probably helped in that decision😂)

Before I had William I hated Christmas and as William doesn’t usually cope with the festivities I was getting this way again but this year I realised I love it, I love the opportunity to see all our family whilst we aren’t working, to eat good food and just be happy. I think Christmas 2021 will be appreciated so much more than any before it by everyone.

William really enjoyed his christmas dinner and when I say that what I actually mean is he actually ate it this year and pudding too 🍰… I hope his nanna doesn’t take this personally against hers especially after my dads comments last year #dry 😂
We took some of his sensory toys and his tablet so that he could freely do what keeps him happy such as watching ‘Little Baby Bum’ on netflix and biting things 😁 The reason his does this is for oral stimulation… If i’m not careful he tries to eat the fluff on my dressing gown, paper, dog food or his own poop 🤮. I do think William may have an eating disorder called Pica which is relatively common in those with autism or developmental conditions.

When we got home he was ready for round two of presents 🎁 and to spend some time with his dad, which was nice as he got to see him open some gifts too.
We ate left over buffet from christmas eve (yes we had room and no I didn’t cook it; it was a cheeky morrisons order) and relaxed in our new PJ’s until bed time.

Williams weighted blanket from big nan was a smash hit but he wouldn’t share it with me, in fact when I tried to cover myself with my own blanket he decided I wasn’t allowed that either😲

Overall this Christmas (year even) wasn’t the one anyone imagined we would be having but to me its given me a whole new appreciation for the festive season and how important it is to spend time with your family. I’m not saying that this time next year I wont be writing a ‘Jingle Hell… Pt.2’ based on last years post but I think I am more prepared now, I can see what triggers William’s meltdowns and can try to prevent them in advance.

I really hope you all had a wonderful christmas or at least got very drunk to block it out🍾
We will all have a re-do for 2021 and it will be the most magical christmas any of us have known, wouldn’t it be amazing if it was a white christmas too ⛄

Its approximately 28 hours until we can say goodbye to this terrible year, I am still working hard on my Understanding Autism level 2 so I may not get the chance to wish you all a happy new year after today but remember, it can not be any worse than this year.
Much Love M. x 😘

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 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 Autism In The News

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 you can completely understand how I felt when I read a news article about a woman called Myka Stauffer. Well it turns out Myka is relatively famous but I had never heard of her. She is a YouTube influencer with 715k subscribers although I am guessing this has dipped substantially recently with #CancelMykaStauffer trending on Twitter.

Until very recently Myka and her husband James were parents to 5 wonderful children; 4 biological children and 1 which was adopted from China, his name is Huxley. As of yesterday they have been in the news because they have chosen to re-home their adoptive child because he has autism and behavioural difficulties.

It pained me to give her views which inadvertently lines her pockets but I wanted to understand who these people were before I threw my 2 pence in.

There are numerous videos about Huxley before he was even Huxley if that makes sense and the videos on average have 75k views. Three years ago she made a video discussing how much she earns from YouTube but I’m not going to lie I could not be bothered to listen to it… I have a good paperback on the go and didn’t want to waste any more time on her than needed so I went onto a site that details the net worth of YouTube channels. Her site is worth $167k 💰 and her family’s daily vlog site is worth $33k 💰and the videos of her journey with Huxley have definitely contributed to that in a big way. Even the video uploaded about ‘re-homing’ Huxley will be earning her money which is disgusting. It currently has almost 1m views. No doubt her highest viewed video to date.
If its about the views for them maybe she could give up one of her biological children next and hit 2 mil!!!
She used Huxley to get money before she even officially had him. She asked her subscribers to partake in fundraiser for him by donating $5 for a jigsaw piece. It was a 1000 piece jigsaw and was the first image she would reveal of Huxley… Well I couldn’t find the link for the fundraiser 😲 but when I looked on some forums I found out that apparently It was just a link to send money directly into Myka’s paypal account.

She did state she would the names of everyone who donates in a baby book for when he was older… Hmm wonder what happened to that! 😡

My first thought when stalking her YouTube channel was that her videos are not my kind of thing, they portray her as a perfect parent, wife and housekeeper which is unattainable and puts pressure on her subscribers to be like that.
I love Mrs Hinch but in a previous post I’m pretty sure I told her to go and fuck herself on one of my bad days. Myka seems to have a very high opinion of herself and from the posts she has shared not relating to Huxley I feel like she is what I like to call a MOMsplainer (another parent that talks to you as if you are neglecting your child, whether it’s on breast feeding, milestones or a vegan diet, they will give you unsolicited bias advice on anything) and I don’t have time for that so she is most definitely someone who’s videos I usually wouldn’t give the time of day.

My second thought is that if she is telling the truth about why she is sharing her adoption journey then we are quite similar in our thought process. Very similar to my statement when we started writing about William, she claims she is sharing her journey to help others going through the same thing and to help educate people in the process. Believe me I’m not relishing in this comparison.

Either Myka is an exceptional actress or she legitimately has the right reasons on some level at wanting to adopt this child. The emotions she display often come across as extremely raw and in parts I really felt for her during the adoption process videos.

This is the first video she posted with the announcement of their intentions.

What upset me on this video was that they are talking about fostering before adoption but how it’s not for them because they wouldn’t be able to give them back… ARE YOU FUCKING KIDDING ME! 🤬

One thing I learnt from watching what felt like a million of these videos was that they specifically went for a ‘special focus’ adoption which means you are taking in a child knowing they have medical issues from the get go… I will repeat. THEY CHOSE THIS ROUTE!
This is  a direct quote from one the video’s in which she talks about Huxley’s diagnosis (this isn’t shared at this point) and what it means to them. They had received 3 different diagnosis’s at this point.

This is our boy and we don’t need to consult with any more physicians until I bring this little guy home. He’s our son and that’s that. We’re not going to trade him in. we’re not going to return him. He’s our boy.

So this crap about not being made aware of his need is absolute horse shit! in a direct quote… They didn’t want to know!

Huxley’s Gotcha Day video is heart-breaking and I’m not going to lie, my little book (a purple one this time for the blog) is speckled with tears. A gotcha Day is the day in which adoptive parents can officially take their child home. This should have been his happily ever after. 😥

From what I can figure out from their multiple levels of social media is that Huxley hadn’t appeared since late March but his appearances had been dwindling since the back end of 2019.

A post has resurfaced in which she is complaining and seeking help on a forum for parents who have also adopted from china, She is upset because Huxley is obsessed with food and will watch everyone eat and it ‘drives her husband bonkers’ well William takes food of strangers plates in restaurants and will actively enter zombie mode to get to what you have if he wants it, biting included. He has also on several occasions decided it is appropriate to come sit on my knee whilst I go to toilet… Kids are kids 🚽

The video itself is very well staged, They are both wearing white, a very common symbol of innocence. She is wearing her glasses which makes it difficult to tell if her high pitched whining is actually accompanied by proper tears.

‘do I feel like a failure as a mom? yes like 500%’

I hate to break it to you tiny tears but you were never his mom in the first place if you could do this!

Coming from the woman who seems to share everything on YouTube, she is explaining why there is no proof of these behaviours which were so difficult to deal with!
She explains that little Huxley has gone to a new mommy who has medical training and the adoption agency have said they are a wonderful fit… I’m pretty sure in the announcement about adopting or one of the many that followed, you said you were prepared for the potential conditions of ‘special focus’ children because you were a registered nurse?!👩‍⚕️

I don’t think there is much more I can say on the subject, I do wonder if he had been her biological son would she have done the same? I could never imagine our lives without William, He’s challenging and can be naughty and I’ve often joked about locking him in a cupboard but he’s my life. My son 💙

FYI – whilst writing this Myka Stauffer has lost 2000 subscribers but her video is now on 1.1 mil.