Posted in Brief updates

Congraduations 🎓

It’s a bittersweet feeling when children of William’s age are moving on and he isn’t, on the 16th July he officially graduated from nursery, only he didn’t.

I’m looking at his little diploma now and it brings tears to my eyes thinking about it, I’m sad but I’m not sure if I am sad for William or for myself. It sad that he doesn’t get to start school with children his own age in September but then if we think about it, he isn’t like children his own age.

William doesn’t understand that he should be going to school so the more I think about it, the more I think about it the more I realise that I am sad for me, sad that I don’t have the excitement of a first day, meeting other mom’s in September, school uniforms and meeting teachers etc. I know it will come eventually but the delay just makes me feel like we are even more different from other children; i feel like its segregating us further.

On the other hand, it makes me really happy about how inclusive his nursery are and that even though he isn’t moving on, he got to graduate with his class. I am so grateful they are keeping him until the easter term; I honestly don’t know what I would have done if they had of said no.

A short and bittersweet update today, much love M 😘 x

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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

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Posted in Brief updates

School allocations

I don’t even know where to start! I don’t even know where to begin this post other than saying everything is fucked!

Yesterday was the legal deadline for allocations for special school, I had waited for what felt like an eternity already, the night before I barely slept and for the full day I felt sick and emotional… I chased them at 2pm to be told my caseworker would be calling me back once the allocations were ready. By 4:30 I was beside myself and asked Williams dad to chase as I didn’t want to keep pestering them (always a nice person and doesn’t get me anywhere!)
Shocking horror! Our caseworker is on annual leave! Who the fuck takes annual leave at such a pivotal time in their office… Mark does! That’s who!

5:30 roles around and Elaine calls me….

William wasn’t on the list of allocations!

What? That cant be right… we were assured he was on the list. Elaine explains that as he doesn’t have an EHCP in place he would never have been on the list but we were told it didn’t matter. I pushed for months to get the process started earlier but due to Covid was told it wasn’t possible. I questioned if it would be an issue to be told it would not… ALL FUCKING LIES!

To say I wasn’t angry and devastated last night would be a huge understatement; I cried uncontrollably for about 3 hours, ranted at Williams dad, my mom and friends and smashed up some old furniture before taking the dog on what I can only describe as a walk in which I felt like I needed to punish the pavement. I needed to get out the feelings of despair so that I could face today as super mom because yesterday I felt exhausted… I felt too tired of all this hard work to get shit on, too tired of fighting to get what is best (but then I have always been a melodramatic kind of girl 🤣

I had to wait until today to speak to our senco; Lisa. She found out yesterday that William wasn’t discussed at applications and apparently had a meeting with her line manager and the head of the Hull SEND team Caroline Scott to discuss Williams options. It would have been fucking amazing if they could have called me first so I didn’t spend a full day waiting on something that wasn’t even going to happen!

His EHCP will be confirmed 3rd of March and there is an exceptionally slim chance they may allocate him a special school during that process but I am not holding my breath as I don’t think I believe a word of it anymore.

I have a meeting on 4th March to discuss this other meeting 🙄 and it looks like our options will be the following…


* Keep him in nursery until the term after he turns five – although he gets funding for nursery it still costs me a lot of money each month for his 2 days and paying full costs for 3 additional days is financially out of the question.

* Home school – we both work which would make this difficult but not impossible however it is the interaction he will miss out on which will not help him develop his communication skills.

* Mainstream with a watertight EHCP – I never wanted mainstream as the environment isn’t right for William and his mental health but this may be our only option until special school allocations next year. I would be able to name a set school on his EHCP and I have done research however I just don’t know if this is best.

I will keep you posted on any further developments.

Much love, M xx

Posted in Brief updates

Writing more but posting less…

I just want to take this moment to say am truly sorry for the radio silence recently. I just wanted to give you a little update of what has being going on.
I decided that when William goes to school I want to make the most of my days off work and ideally would want to volunteer with children who are like William, I’m not sure how yet or where but I want to help people so I decided to do a Level 2 in autism understanding but sadly that means my free nights A.KA when William is asleep (or should be 😴) are currently being taken up with working on my assignments.

My first assignment was handed in and thankfully I have passed 🏆 So I just need to smash this next one out of the park to warrant a pass as a whole and who knows I may even decide to do further courses to develop my knowledge.

You will have my undivided attention again after 7th January when I can hopefully share my success with you all. I will be posting a William update over the christmas period but until then I wish you all a very merry christmas albeit a different kind to the one we are used to but a happy one nonetheless. 🎄

Much love as always, M & W xx

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 Brief updates, Emotions

Single parent

Did you know there are around 1.8 million single parents in the UK – they make up nearly a quarter of families with dependent children. 1.62 million of these are women. I never really thought about this until it happened to us.

I could lie to you all and say we have had an easy ride of things recently but I think you probably know that’s not the case. This is a big adjustment period for me and more importantly for William.

My main focus is to continue to ensure William has a good solid routine in place which is pivotal to him. He is keeping me extremely busy as he seems to be struggling with this huge change in his life, bed times and mornings are now only ever with me and I don’t think he enjoys them very much. He fights and kicks me when I try to change his clothes, runs away from me and screams but we get it done.

We take the dog for nice little walks (well he walks us🐕‍🦺) which William seems to really enjoy even though he is in the comfort of his stroller and flat of refuses to do any walking. I’m tempted to stay at home and just tie the dog to the stroller and let him pull it arpund the street like a sled 🛷 but I think that would constitute as child cruelty or animal cruelty. Maybe neglect? So I best continue to go with them 🤣

We are eating healthier (as healthy as a boy thats half chicken nugget will eat anyway🍗) and trying to turn this into a positive thing for our lives and look to our future.

We’ve had meltdowns and shutdowns (from both of us😭) but we’ve come through it and these are getting less and less frequent on both parts. He is slowly adjusting to his new routine and I can now see the light at the end of the tunnel but its hard. Harder than it ever was before but we are doing ok. In fact we are more than ok, we aren’t just surviving like I thought we would. We are actually living thanks to our amazing support network of family and friends.

We can not thank everyone enough for reaching out to us, the doorstep visits, dropping off shopping and just being there for us. It means more than you all could ever know 😘 Much love M x

Posted in Brief updates

Being social

Back in May we decided to open up our lives even further by branching out onto several social media platforms to reach a broader audience and share smaller updates.

Please click on any of the logos to see our pages and if you like what you see please Like, follow and share.

Find us on Twitter by clicking the logo 🙂
This one for Facebook 🙂
And finally… This one for Instagram 🙂

Much love, the Buckley’s 😘

Posted in Brief updates

OK, Bye then

Its no secret that I don’t like people. Actually that’s a lie. I like plenty of people just not starngers and it takes me a long time to be comfortable around anyone.

I have often spoken about Sarah but just in case some of you aren’t sure on who I am referring to… Sarah is our amazing health visitor. She has stayed with us for about 4 years since before William had even arrived.
I have always maintained that Sarah is massively overworked and unpaid and I will stick to that. She has been an absolute godsend to us throughout our journey and when we moved house she promised she would stay with us…Lets fast-forward to present day and do you a little play back play

Lets fast forward to present day, here’s a little bit of a run down

  • Postman checks front garden for dog (its the cat he should be more affraid of 🐈)
  • Thump of mail hitting the mat triggers both me and William to dash for the door… He wants to eat it and I want to read it.
  • Its a win/win, I get the letters and he gets the Farmfoods leaflet.
  • I begin to shout for Dave…

This ever so nice letter from the community health team tells me that ‘as we new to the area’ we have been allocated a new health visitor and she will be coming to see us on said date.

As you can imagine we are confused so I call the number of the letter, I didn’t really hold out much hope as I had left a few messages for Sarah with their reception and never heard back.
The answer and transfer me somewhere else…
I explain that I have been in the area over a year now and we were told Sarah would be staying with us. I’m crying at this point because its such a big thig for us to have her in our corner; helping me fill out forms, turning up to meetings she isn’t invited to etc. The woman then asks me if William has additional needs.

Sarah has gone… she got a new job and isn’t a health visitor any more and her caseload has been deployed to others.

Needless to say we are devastated, a little hurt we weren’t told but mainly devastated.

We are worried that we wont get the same level of support from some who doesn’t know us. That we have to build that relationship back up and we don’t have the time to do that with William hopefully attending school next year.
Are we going to have to repeat the last few years and have the same conversations?

I think we were lucky to keep Sarah as long as we did and I am so grateful for that and although for us this is a massive blow I really hope that in her new role she will be very happy and appreciated for all the hard work she puts in to everything.

Louise. That’s our new health visitor who we will be meeting a in a few weeks, I really hope she reads through all Williams notes and makes us feel at ease but for now we will just have to wait and see. Although she does get points for calling us after my distressed phone call… Maybe this isn’t going to as bad as we think…

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?