Posted in Brief updates

Announcement

I have been sat on something for quite some time now but have been cautious about making it public knowledge until the right time, but I think now is that time, time to let the proverbial cat out of the bag 🐈

I have been a little Jekyll and Hyde in posts about mainstream schools, those that have been around since the beginning; since before ‘Our journey onto the Spectrum’ was a thing and it was just simply our life, will remember how adamant I was that William was would get the education he needed, the education he deserves. Somewhere over the last year, what was right for William got turned around and it because what was right for the Local Authority.

Pressure was put upon me to name mainstream schools, with phrases such as
‘by law you have to name mainstream schools for allocations…’
I can categorically state this is absolute bullshit! But when the forms came through, I felt forced to do so, I felt manipulated and bullied into making a decision that I new deep down was not correct for my child.

The crushing disappointment that came on February 15th when William was left of the consideration list for special school places almost tipped me over the edge mentally and knocked the little bit of fight out of me that I had left. I remember saying to Debs that I just couldn’t fight anymore, and she told me I was only just starting… she is usually right always right but I just felt so deflated that I wasn’t ready to admit that to myself. If we think back to that time; I kind of had a lot of other things going on in my personal life. Breakdown of marriage, adjusting to being on my own, juggling my finances and not being able to see my family due to covid. I think I was at a stage in which if the Local Authority told me to have William educated in the local dump, that I would have agreed.

Williams EHCP draft was completed on 29th April, but I didn’t get it until 6th May, I filled out my parental response form naming the mainstream school I had chosen and in which myself, the nursery and the Local Authority Senco had all liaised with shortly before.
The head teacher couldn’t confirm they could meet Williams needs without the EHCP but I was expected to name them for the final copy without this confirmation… I felt I had no choice, so I named them and was ready to post it and I am so grateful I didn’t do it straight away.

On the 7th May, I got my fight back with help from the most amazing woman, a woman who has never stopped fighting for what is right for her child. A woman who helped me kick myself up the arse and point me in the right directions about my rights. K❤ If it wasn’t for her, I wouldn’t have sought legal advice, which I have been given free of charge thanks to the specialists she pointed my in the direction to… I have since been awarded legal aid and its not even something I would have looked into if not for her.
I tip-exed out my school of choice and wrote that I specifically wanted a specialist school and named one in which I feel and have always felt would be appropriate for the education of my child, one in which can without a doubt give my child the education he needs and deserves. I sealed it and sent it straight away. ✉ Had it have been 24 hours later I would have made the biggest mistake of my life (and believe me, I have made a few… divorce impeding remember 🙄

I think friendship and support comes from the most random and unlikely places but when your children have special needs, you just see each other and think ‘I’ve got you’
There are so many people in my life that have supported us in this journey purely because they understand and  have been there themselves.

The Local Authority doesn’t tell you what you need or are entitled to, the don’t point you in the right direction for your children, they point you in the direction which is the best for them. It’s the other parents that do that, the parents that fought a little harder than we did, the parents who scraped and struggled for help and answers. They then pass that down to us.

The NHS isn’t much better, purely because the communication between departments is virtually non-existent when it come to special needs kids so not only are you fighting one entity such as the local authority but also the NHS and its procedures and policies. I am a huge fan of the NHS and the Queen has rightly awarded them with the George Cross, which is the highest award bestowed by the British government “for acts of the greatest heroism or for most conspicuous courage in circumstance of extreme danger” and the NHS truly deserve it due to all they have done to save lives not only during the Covid-19 pandemic but for the last 73 years.

I saw this a while ago and thought it summed everything up perfectly…

Other parents came into my hole to help me, and I will happily climb into the next person’s hole because that is how this works.

Anyway, I digressed a little from the point, should the Local Authority fail to provide William with an acceptable school setting which will meet all his needs, baring in mind this has to be done by the time the send me the final copy of the EHCP, then I am fully ready to take them to a tribunal. It looks like it may be a big fight 🥊 but I’m ready this time.

Let’s end this post on something amazing.
This is something I never thought I would be able to tell people, William spoke… and in true William fashion; just like all his other firsts, it was at Big Nannas 🥰

He said ‘Nanna’ in context, six times!!! Six whole times!!! and the following day did it again when going passed her street. These may be complete flukes and I don’t want to build massive hopes upon it, but it is so much more than I ever expected. I mean Mama would have been even better but beggars can’t be choosers 🤣

All my love, M xx

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

Get new rants delivered directly to your inbox.

Please remember to check us out, and follow us on our social media pages 🙂

Facebook – https://www.facebook.com/ourjourneyontothespectrum
Instagram – https://www.instagram.com/ourjourneyontothespectrum/
Twitter – https://twitter.com/OurJOTS

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 autism and covid19, Emotions

How do you know if you are doing the right thing?

As a parent this is something, we always ask ourselves until our child reaches an age in which their own decisions can be trusted. As a parent of a child with special needs not only do you question your choices but you over analyse every decision you are forced to make but what do you do when that spills out into your own life? When the simplest of decisions can be agonising because you try to predict every possible outcome which proves impossible and life just becomes too overwhelming. When every decision comes back to haunt you?

The pressures of being a single parent to child with additional needs is immense, every choice reflects upon your child from simple things like buying a different brand of chicken nuggets by mistake or choosing the wrong school. They both seem like such opposite ends of the scale, but both have a massive impact on Williams life and the responsibility of chicken nuggets is a big one on its own without the other factors.

What if they stop making his chicken nuggets, when is the right time to introduce new chicken nuggets? I am aware it sounds crazy, but I need to think of these things and try to find a solution before they happen.

Sometimes things do happen in which there was no way you could plan ahead for. Somethings happen and take you so much by surprise that you do not know how you will recover or if you ever will but in some circumstances you thrive.

How do you deal with those situations? I feel like I have become more guarded. I feel like I have to step up and become super mom, I feel like there is a constant battle to ensure William has the best support, the best family, the right environment and so on… I don’t know if that’s a natural part of being a parent, a single parent or a special needs parent but it’s exhausting.
I am exhausted! It so hard to maintain a good balance between being mommy and being Marie and I feel like I am losing myself. It sounds daft because you don’t get a break from being a parent, it’s not a job; it’s a privilege. You don’t get sick days no matter how poorly you are or how much pain you are in, being a parent is just who you are on a fundamental level. With this pandemic its difficult to find the time to stop and take a breath. It’s not as if William can go to his Nanna and Grandad’s so that I can…🥁… have a nap. (not very rock and roll of me I know)
It’s those kinds of things that I think we all took for granted, I don’t think any of us really appreciated how much we benefited from the everyday interactions we had with our family and friends.

Posted in Brief updates

It will always be me

It is a strange feeling to know that it will always be me who will get up to soothe William in the night, always me that will get to kiss him goodnight and always me who will be bitten and hit during meltdowns. I never imagined I would have to try and coparent with anyone who wasn’t my spouse and it’s hard to have to stay in such close contact with someone who has hurt you so badly but it isn’t about me, its about William and he has and always will come first.

That being said I am trying hard to keep my own mental health a priority too, I have made it no secret that the last time I had a lot of changes in my life I had a breakdown and went to a dark and scary place but I came through it with a lot of help but only once I able to admit my feelings. I am very lucky to have an amazing support network who I can be open and honest with about my feelings. I can cry, shout and be irrational without being judged and I am so grateful for that.

There are many things that I am so thankful for right now. After weeks of practising William has finally mastered his first Makaton sign… I don’t think it will surprise anyone when I tell you it is for food. 🥗 that boy loves his grub! I am going to slowly introduce more signs and have invested in the Makaton core vocabulary stages 1-8 book, I bought this direct from the Makaton charity so that I know the money is going to the right place and would recommend anyone to do the same. I will keep you posted on any further developments when it arrives. Check out the video here.


William also got his first grazed knee, he was outside playing and fell which shouldn’t be a good thing but… it was the first time he put he hands out to stop his fall. It was not just a fall because he lost balance, he fell because he was excited and trying to run. He reached out to me for comfort and as I held him, he stopped crying. That wasn’t usually something I could do as he always sought his dad for comfort.


We are missing Big Nan loads 😥 Sundays aren’t really Sundays with out seeing her or having her Sunday dinners 🤤 I worry that when national lockdown ends we will go straight into localized restrictions. I know she is missing us just as much. When we call her and she asks William for a kiss, he starts kissing the phone. He does not do this for anyone else. Their bond is amazing despite spending 113 days apart in the last lockdown, not that I counted 😳

We have had many sleepless nights recently whether its because William is still adjusting to his new routine or because the poor little guy always seems to be poorly, he manages to pick up a cold more often than some people change their underwear. I swear that boy has had a constant runny nose since he was two years old. Then there are his bowel problems which means he either can’t go to toilet or that when he does they are massive explosions of nastiness… But with the help of lots of coffee and cuddles we have survived them.

Before I sign off I want to tell you about one of my solo fails recently and I apologise if I have told this story in a previous post…
William had a huge explosion during our first week alone, I’m not going to lie for a few seconds I freaked out. We were in the living room, so I stripped him off and made our way to the bathroom (which is downstairs) through the kitchen. His hands were covered in poop and I managed to prevent him touching anything except the bathroom door. Swiftly plopped him into the bathtub and hosed him down with shower, William hates bath time but seemed soothed under the stream of water and as there was no risk of drowning I left him sat in the empty bath running his hands under the shower head… My plan was to disinfect the door which was easily done and then quickly grab his dirty clothes and nappy so we could go straight back into the living room to continue whatever it was we were doing (most likely watching Little Baby Bum on Netflix📺) I’m not going to lie, I felt pretty chuffed with myself but as I pushed open the living room door that soon changed… there was poop everywhere!!! The dog had destroyed the nappy and my clean living room now resembled a port-a-loo at a festival 🤮 needless to say the experience was most definitely a learning curve and since then the dog is not left unsupervised with shitty nappies.

Oh and check out this picture, my DNA runs strong in this one…

The brows on us two 🤣

As always much love 😘, M.x

Posted in Reference

I See You

I Have seen this poem shared on Facebook several times throughout the last year but it didn’t resonate as much as it does today. You may remember the ‘Welcome to Holland’ poem I shared which in the beginning really touched me. Check that out here.

Unfortunately I haven’t been able to trace its origin but whomever wrote it, Thank you!
I needed to read something like this right now and am so grateful for the Mom who shared it again 😘

I see you…

I see you taking your kid to therapy while your friends take their kids to football or ballet.

I see you sneak out of the conversation when all your friends boast about achievements and exam notes.

I see you juggle work, events and meetings.

I see you sitting on the computer for hours investigating what your child needs.

I see you make a face when people complain about what looks like nonsense.

I see you disappear little by little but you keep going beyond for your family.

I see you pull strength from weakness with a force you didn’t even dream you had.

I see you showing respect for teachers, therapists and medical professionals who help your child and help you.

Watching you wake up early in the morning to do it all again after another chaotic night.

I see you when you’re on the edge of the precipice struggling to live.

I know you feel invisible, like no one notices.
But I want you to know that I see you.

I see you push forward always. I see you choose to do everything you can to give your child the best care at home, school, therapy and the doctors.
What you do matters. It’s worth the struggle.

On those days when you wonder if you can make it one more minute, I want you to know I see you.

I want you to know that you are beautiful.
I want you to know it’s worth it. I want you to know that you are not alone. I want you to know that love is the most important thing, and that you are the best at it.

And in those days when you see an improvement, those moments when hard work has its reward, and you can taste success, I’ll see you then too.
And I’m proud of you.

Whatever day today is …
You’re doing it right.

And I see you. ❤

Posted in Thank You

In a Gap… Pt2, The Ladder

Today I want to talk about help and the places in which you expect it to come from but more importantly the places you would never expect. Today I want to talk about Essity and the amazing and generous help they have offered us but first I was to give you all a little background on what has led to today. This is by no means a sponsored post as Essity has kept all communication private but I feel they need to be mentioned as people find it so easy to brand big companies as heartless and greedy but today Essity has really helped put us out of the gap we found ourselves in in regards to the nappy service.

We have spoken previously about when it comes to help from the NHS, the council and other sources we often find ourselves in a gap; a void that you fall into when you miss the criteria that warrants help. It can be so frustrating that in our case Williams age prevents him from getting the help he needs or the help we need to keep him clean, healthy, and safe.

We have cried at receptionists, doctors, health visitors and many other health professionals because we have been denied access to the services we so desperately need.

There is a quote that occasionally does the rounds on the support group that we are part of, and it always really resonates with me.

A SPECIAL NEEDS PARENT FALLS DOWN A HOLE

Family/friend: “What hole?”
Boss: “Oh that’s a shame. You can take the day off”
Doctor: “Can you keep a diary of your experience in the hole?”
CAMHS: “We will assess the size of the hole however it may take over 2 and a half years”
Local Authority: “Sorry we don’t have enough money for a ladder”
Charity: “Here is a form to fill in. This will get you on a waiting list for a ladder”
Another special needs parent: “I’m here! I’m coming down there with you, I’ve been down here before and we can share my ladder”

We have had so much support from parents who have been in similar situations to our that it truly is inspirational. I would love to be able to help parents that start their own journeys which is one of the reasons we started our blog. Someone recently reached out to us on our twitter page to see if we could help their friend and I felt like we were part of something bigger. A group of parents who are bound together by being let down by a system that is set up to fail us. To make us feel like we can not help our children ourselves and need the extra support, its dangled in front of us like a carrot only to be pulled that little further away each time.

I just want to give you a little background information on Essity as I had to do a little research before writing this because I had never heard of them before. Essity is a leading global health company that originates in Sweden that develops, produces, and sells personal care items such as baby care, feminine care, incontinence products and medical solutions, plus so much more.

Essity´s vision is according to their website that they are dedicated to improving well-being through leading hygiene and health solutions.

They produce household names like Tena, Libero, Cushelle, Plenty, Bodyform, Cultimed and so many more across the globe
As I have admitted I had never heard of Essity but I had heard of their brands, brands most families have in their cupboards including ourselves.

Thank you!!

On the homepage on their website there is a quote ‘You want to make a difference every day. So do we.’ and usually when I see that kind of thing on a corporate website I would roll my eyes but they really mean it.

Today they have made the extraordinary offer to provide us with some suitable nappies for William until he is eligible for the nappy service from the NHS. This huge company that doesn’t know us from Adam has seen that we are in hole and thrown down that ladder that usually only other special needs parents carry around with them. This massive Swedish company has reached out to a little family from Hull and saved us. I know that may seem extreme as it is just nappies to most people but to us it a necessity and one that we may have been unable to source once William grows out of the standard sizes which will happen any day now and long before he turns four in 6 months.

There is really nothing we can do to repay such an amazing gesture other than to say thank you from all of us. Not just me, David and William but from our full family, from the staff at his nursery, our health visitor and every other professional to whom I have cried to about the unjust 4 year old rule.

Thank You! ❤

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?