Posted in Emotions

Overcast

There is no manual for being a parent, there are help books and forums that can point you in the right direction, but what if your child has autism? Every single day is different and thing which have been successful in the past may not work out in the future.
If there was a manual for William, then I would give up everything I have for just an indication that I was doing something right.

Days like today are tough, I don’t know if it’s because I was already feeling a bit low, but the most insignificant thing tipped me over the edge… Orbeez. They are these tiny little beads that grow much bigger when in water and anyone who has used the will probably think it was the disposal that I found traumatising, but it wasn’t. We have used these on a fair few occasions and William has loved them with no incident, so much so that I had 50 thousand of the little fuckers to fill the bath with. He didn’t want to get in and lashed out at me, then he grabbed handfuls of them and threw them all over the bathroom but decided he did in fact want to get in and proceeded to fight me as I tried to remove his nappy. Once in the tub it went even further downhill as he started eating them… FUCK YOU PICA! I kept stopping him putting them in his mouth but, his other hand was ready with a fistful to shovel in and holding onto both was near on impossible. Getting him out the bath felt the same as he didn’t want to so flopped himself down and flopping about when I tried to grab a hold of him.
It felt like hours, just stopping him eating them (and failing) and trying to coax him out of the bath.

I wrapped him in a towel, and he snuggled into me, I sat there telling my four year old that I didn’t know what I was doing and that I would try to do better, that he deserves a better mom than me. It was all very dramatic even for my standards over a few non-toxic water beads. 🙄

I’m just having one of those days in which I feel like I am not good enough, these kind of days just creep up on you like a small grey cloud in the sky but before you even notice you are suddenly in a thunderstorm. That’s how my head feels today.  A little overcast and very dark ☁ but I am sure it will pass… just like the Orbeez.

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Posted in Brief updates

Last night they heard the screaming

Then a silence that chilled my soul.
The type of silence that comes when the tears dont stop but you can’t breathe enough to make noise… I know this song is about domestic violence but I felt it was an accurate (even though edited) lyric to describe my emotions yesterday.

I’m not sure if I mentioned this previous but I had invoked my right of access in accordance with the GDPR act 2018, requesting the local authority send me all information in relation to educational matters for William… if anyone reading this is going through something similar; I have an amazing template that another mom sent me 🙂

Lets just throw out there that I have had an amazing week in relation to William, he was at his dads so I had chance to plan my next venture into decorating but I received Williams blue badge which give us the right to park in a disabled bay (I don’t drive but will come in very handy when we are in someone else’s car) and I spoke to the nursery who have advised I no longer have to pay for William to attend and only pay for his meals, well I am in credit so I won’t have to pay anything right up until he leaves next Easter.

The right of access is also known as a subject access request was received today, and it’s made me so angry and upset that I needed to lock myself in the bathroom (The MR was here and he isn’t ready to see this side of me yet or maybe I’m just not ready to show him🤨) but I angry cried, you know the type; loud and messy. Smacking my fists on the floor feeling like my rage would destroy the concrete and not my hands. My neighbours must have heard me and I’m pretty sure I made noises only dogs could hear but I needed to let it out but I was so worked up that I couldn’t breathe and the angry tears became silent ones that I had even less control over.
The reason I had done a S.A.R was to catch them out in lies to back up the potential tribunal but I didn’t realise that it would reopen old wounds 🤕

I remember special school allocations like it was yesterday, it was another couldn’t breathe moment. It was February 15th. check out the post School allocations, if you cant remember.
July 2020 we were told he was going to considered for place… There isn’t a single document in the full S.A.R relating to any conversations in regard to this! not one! meaning that when I said the whole thing was all fucking lies, I was in fact correct. It was all fucking lies!

There are lots of missing sections, specifically relating to meetings, discussions and referrals in which I took our senco’s word for and apparently haven’t happened. I believe there is another child’s information in there too (How many times is the L.A going to breech GDPR? actually don’t answer that since they are still referring to the 1998 DPA act in their emails)

I’m angry at myself for being so upset, especially when its just confirming what I already knew, I only wanted the documentation to back up my claims with the solicitor and hadn’t even considered how it would make me feel 🙄

There was something else in there that I have great concern with but am awaiting clarification on its meaning before I comment on it but if what I think I am reading is correct then the whole fucking authority is morally wrong and incapable of putting children above themselves.

Stay tuned in by subscribing so you don’t miss out on the instalment of ‘how the local authority fuck us over’

Much love, M.x

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Posted in Emotions

Panic! at the play date

I have come to realise that I’m a bit of an introvert, it sounds silly as I come on here and share so much information but in real life I shy away from people, I avoid activities and places that I am uncomfortable with, and I want to keep myself away from people who may judge me as a mother or William as a child. I am now at the point in which I don’t know if what I am doing is to protect myself or him. I want to tell you about my irrational fear of playdates…

I went on a playdate once, I mean there has been more than one over the years considering we have one every week minimum but this one is the most memorable, it much have been well over 2 years ago and I must say it was one of the most horrendous moments of my life.

William was definitely under the age of two as it wasn’t until his two-year check-up that I started to accept his potential problems.

Soft play! What kid doesn’t love soft play? My kid; that’s who!

I went with two friends from work who had both had their children around 5 months after I had William, please bear in mind that these two women, were women I felt comfortable with and had spent a lot of time with over the years, but I was dreading it, I remember being stood at the bus stop feeling so sick that I almost cancelled. I had already started noticing the stark differences between my child and children of his age and being around them and trying to sugar coat and deny Williams delays in development was exhausting and the more I had to do it, the less I was convincing myself.

Their children were beautiful but that wasn’t what bothered me, what bothered me was that they were so agile on their feet, they climbed and played independently, they communicated not only with each other but with their moms too whereas William just clung to me crying. He was barely walking independently and struggled to communicate non-verbally let alone with words.

The date didn’t end with soft play, we went for lunch. Their children played and independently ate and seemed to thoroughly enjoy themselves. William refused to eat and remained silent.

I felt like a failure, what had I done so that my child wasn’t like theirs? Was I not loving him enough? Was it because I was working and wasn’t with him all the time?

I didn’t reach out for another play date.
Was that wrong of me? I truly don’t know. I don’t actively seek out play dates with anyone, but sometimes they just happen.

We have play dates once a week with the same child and they go really well but they are often in the comfort of our home, William has familiar surroundings and can easily access his safe place. We have had a few outside the home and some have been great and others not so much, but it all depends on how William handles the situation or environment. We went into our local park once and it is truly beautiful in there, I don’t think I appreciate it enough since its on my doorstep but on this day it was busy, it was a half term of some sort and William was struggling, he wouldn’t walk and I didn’t have the stroller since we are still waiting his referral and he kept laying on the floor to the point I was peeling him off it like day old gum. Teens laughed at him and I felt myself getting more upset, William continued to shutdown… It was not a good play date, but we continue to have them, maybe it’s because I understand William more now than I did back then, I just don’t know. I don’t know why these playdates don’t bring on anxiety and sickness, but others do. Maybe it’s the unknown 🤷‍♀️

I guess I need to put myself and William out there more, but I don’t know if it is what is best, William doesn’t engage with other children at nursery so am I being unrealistic in trying to get him to engage with other children on his days off, is it fair on him? But then am I just saying that because the memory of how bad of a mother I felt back then is impacting my decisions now?

How silly is it that something so simple as meeting other parents and kids can make me feel so anxious that I am physically sick? How do I get passed this? Do I even need to?

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Posted in EHCP Process

The (EHC) plan that time forgot

There is still no update on the L.A finding him a suitable provision and they are well passed the 20 week timescale shown below, gratefully pinched from the Kids website 😊

28th October 2020 they confirmed all information was received.

9th December 2020 they confirmed William would be assessed for an EHCP – the last day of the timescale.

17th February 2021, they had up until this date to gather report and information. Reports were not gathered until the final two weeks of this deadline and his report from speech and language was not included despite this being his main area of need. (lets not forget that the specialized allocations were 15th February and I have been asking since the beginning of 2020 (February at the latest and kept getting told, we will start when… we will start after etc)

The draft should then have been issued at the end of this week. However, it was received 1st May 2021, almost 27 weeks after the confirmed they had received the request. I should have received my final copy and be done and dusted by that point but no, not in Hull 🙄

We are currently 41 weeks in and still no final copy despite multiple chases.

The local authority are currently over double the timeframe they should adhere to which is why we have no idea what your future education will look like. It’s a joke.

*Amendment*
On the 28th July I received a phone call from Williams new case worker, the illusive Richard day, I was beginning to feel like this man didn’t exist. The Local Authority is finally in full agreement that William needs a place within a specialised provision! we are currently unaware of where this will be but they are aiming to have a provision for April/May 2022. The overwhelming relief was amazing however due to the lies and misinformation we have been given in the past, I wont full believe it until they follow through on this.

My solicitor is submitting a complaint in regards to the timescales taken for the EHCP and we must await this document before we can decide whether we wish to proceed to a tribunal. I’m not looking for compensation (why take money from an already underfunded department?) but they need to know that what they are doing is legally and morally wrong.

I will keep you posted, M x 😘

Posted in Appointments, EHCP Process

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 autism and covid19, EHCP Process

Lockdown 3.0

It’s a strange time for everyone at the moment, no one wanted another national lockdown, but it was inevitable, and I do believe it’s for the best. I thought that after the new year I could get a little bit of my life back and can start having one but that will have to wait.

The problem with being alone is it gives you time to think and over analyse things such as school!! All the applications are in, the EHCP is in process and now I can only sit and wait and that is the bit I can’t cope with. The decision on special schools is usually made by the end of January so I should hear something no later than the middle of February but I’m now worried that they may be running behind on it because of Covid and I don’t think I can take it; the wait is already driving me crazy. If I go for worst case scenario which is middle of February, then its 35 days to wait. 35 days of freaking out about if he is going to get a place he so desperately needs and if he doesn’t, it’s even further away until the middle of April for mainstream allocations. I want to be optimistic, his EHCP is 90 pages long, his issues are profound and complex, and all parties involved have agreed it would be the best place for him but what if it just doesn’t happen? I have a whole new scenario to stress about. For someone who has lists about lists its really difficult to be able to plan for events you have no control over.

That’s exactly how I feel kid…

On a positive note, I have finished my level 2 in autism understanding and am awaiting my tutor to confirm if she passes the second module. I do feel confident about it to be honest and really enjoyed doing it, once my pass certificate arrives, I think I may do more, I have already scoped out two further courses; level 2 in challenging behaviour and a level 2 in learning difficulties, I think they will both come in handy for when I pick up some volunteer work when William starts school.

William is doing really well in his development; his eye contact has improved drastically, and he is getting very good at object exchange to show me what he wants. He even takes his own pots into the kitchen and only throw them about 10% of the time 😂 I know it doesn’t seem like a lot but to me it is amazing. To me a few seconds of eye contact can bring tears to my eyes.


We did have a few bad nights recently as William had some bowel issues 💩, he ended up in my bed for over three hours crying and needing me to rub his tummy. I wish I could take his issues away and make him feel better when he’s in pain.

I’m so grateful that nursery is still open during this lockdown as I am not sure how I would be able to work and look after him as he needs constant supervision. My head tells me that I should have made the decision to keep him off to protect us from potential contact with Covid but the disruption of his routine would also be hard on him and he has had enough of that recently. If possible I want things to remain normal for him.

We have lots of messy play planned for lockdown which I’m really excited about but may regret deeply 😂 We tried out slime in the bathtub which was super fun messy but totally worth it to see Williams face, not so much the having to clean the tub part.

Next on the list is finger painting so wish my upholstery good luck 🍀

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 Emotions

It’s in the DNA

Males inherit the X chromosome from their mothers, the Y from their fathers.

Williams results from the genetics testing came today and its a bit of a mouthful but… there was a variation from the normal pattern wirh interstitial hemixygous copy number gain Xp22.33. The test states there is additional genetic material.

Chromosome 22 is the second smallest human chromosome (21 is the smallest) including more than 51 million DNA sectors (they’re in pairs) and represent between 1.5 and 2% of the total DNA in cells.

There is no defined link between this and autism but there are a few case studies referring to it and those with learning difficulties but not enough research has been carried out. Its is classed medically as having uncertain clinical significance.

If it has come back as nothing detected that would have been shit but manageable.

If something would have been detected on his Y chromosome I wouldn’t have blamed Dave but I am sat here now blaming myself. After all the X chromosome came from me.

Have I done this to him? To us? The paediatrician will be booking in a consultation to discuss the results in more detail and establish if further investigations are needed but now I’m terrified of what they will say… will further investigation point the finger at me even more?

I just feel like I’m back at the beginning of our journey, like all the progress we’ve made in our acceptance and grieving over a child we thought we would have hasn’t mattered and I’m back to looking at him and crying because this could all be down to me.

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 Emotions

Understanding and accepting

Before acceptance must come understanding.

People often struggle to differentiate between a child with autism and a child who is being naughty.

As a parent who suffers with anxiety it is very difficult to go to certain places and deal with other people who don’t know William like we do.

Something as simple as a journey on a bus can set me into a tailspin, a small journey can lead to an argument due to the fact other passengers look at William as see what they deem as an ablebodied 3 year old in stroller taking up a space they feel someone else needs more. Not all disabilities are visible and what give you the right to assume!

A trip to a supermarket can lead to a full meltdown due to the hustle and bustle of different people, a different environment, bright lights and loud noises. One the rare occasions he will walk, he will often end up laid on floor and go floppy because he can’t handle the stimulation and lack of familiar surroundings and comfort.
This is not a toddler having a tantrum because he can’t get sweets or doesn’t want to walk, its because he is in pain.

When we go to a restaurant, cafe or bar he will beeline for any food he can see, we will stop him before he takes it but it can lead to awkward conversations, dirty looks and whispered remarks.
This isn’t because he isn’t fed at home or because he is rude. This is because food is such a high motivator for him and that the fact it doesn’t belong to him doesn’t even register.

I shouldn’t have to apologise for my son for being himself but I find it becomes a more frequent occurrence as time goes on. I shouldn’t have to explain why he is the way he is, there should be a wider understanding of the autism spectrum leading to acceptance.

I truly believe that autism awareness and understanding should be educated in schools so that future generations don’t make the same mistakes and assumptions.
There are no definitive figures of those with autism as no record or register is kept but based on recent surveys 1 out of 100 has autism.


Think of the children in your child’s year at school, think of the children who you went to school with. I wish I had been more aware, more educated and a better person.

I want that for the future, for children like William and for parents like us who often feel we should apologise on behalf of our son when maybe, just maybe they should be apologising to us for their small mindedness.

Much love, The Buckley’s Xxx