Posted in Events & Holidays

It’s beginning to look a lot like… the end of November

Its that time of year, people have started putting their Christmas decorations up and I excitedly point them out to William hoping to see some kind of flash of recognition or magic in his eyes but there is nothing, but that doesn’t mean it will always be this way and I cling to that. This is going to be Williams fifth Christmas which means as per our tradition it will be his fifth Christmas Mickey toy and this year, I will start the tradition for Little Miss.

I was always a self-confessed scrooge; Christmas was never like it was portrayed in the movies and it always fell short of my expectations. There was no snow on the ground, we didn’t have a house full of people, all happy and playing board games. Don’t get me wrong, as a child our Christmases were magical… ‘Santa’ would fill little stockings outside our bedroom doors, and I would excitedly run into H’s bedroom. ‘he’s been!’ I would scream and the excitement would begin.
We weren’t allowed downstairs until my mom had been to pick up big nanna so we would sit on the top step waiting to hear the car pull into the driveway.
‘Santa’ always delivered except if it was something noisy… like the Christmas of 92 when H was severely disappointed at not getting a Teenage Ninja Mutant Turtles whistle. Apparently, it was sold out, but mom and dad didn’t want something so noisy in the house so got her a ball instead haha🏀

I’m a weirdo and love giving presents to people, I love thinking about what I feel people will appreciate and putting thought and love into gifts and then seeing their faces when they open them. On the flip side and this definitely makes me a hypocrite, I am a terrible person to buy for, I hate receiving gifts and being expected to open them in front of people, purely because I cannot hide my reactions… my face always gives me away. My girlfriends and I do a Secret Santa every year and I flat out refuse to open mine, mainly because on Christmas day, I don’t really have a lot to open but also so that I can do it in private. Birthdays are the same too. I am super grateful to anyone that thinks enough of me and is generous enough to buy a gift, but I like the privacy of opening them alone.

William’s Christmases aren’t like the movies, or the ones I had as a kid, but we adapt to suit the kind of Christmas he needs, and we try to make it as special for him as he can handle. Separation can be hard as it usually involves two Christmases and two birthdays, but William can only just cope with one. Thankfully me and his dad are on the same page and can make plans which suit William without it turning into an all-out war and I’m grateful for that.

Last year despite the covid restrictions, William had what I can only describe as our first peaceful Christmas; everything was done at his pace… there was no rushing and no expectations. Peace and joy for all.

My tree is not yet up as I don’t know how William will handle it due to his pica and his obsessive need to eat objects, for the last few years I’ve ran interference but it’s not getting any easier. Putting my tree up is magical to me; it’s the same tree we had as children, so it brings back many happy memories for me putting on all the old but very loved ornaments and seeing them incorporated with our own newer ones.  I think my favourite is a little green one which is half open and contains the three wise men, I mean… I think they are the tree wise men, but they are so worn that they could be miniature figures of the Bee Gees. Staying alive on my Christmas tree 😂

My stand-alone ornaments have long been abandoned and are currently sat gathering dust in my spare bedroom/office, I think I may donate them to a charity shop as I imagine they will sell this time of year and I often like to take William’s old clothes and toys in for them to be sold for a good purpose and go to a good home. I used to try and sell things on Facebook but it’s not worth it as everyone wants something for nothing whether they can afford it or not.

I guess what I really want to say to you all, is enjoy the up coming festive season in any which way you decide to celebrate it.

All my love 😘 M.x

Posted in Brief updates

Divorce

🎶 And now, the end is near. And so, I face the final curtain…

Divorce is something I never thought would happen to me, it sounds silly, doesn’t it? But when I got married, like most people, I thought it would be forever despite any issues that may have arisen. I accept that It’s a little bit of an old-fashioned notion, but I came from a very happy home with two parents, and I always envisioned I would have the same kind of home for my future children.

I’ve tried to remain private about the split between William’s dad and I, until now… you won’t be getting the gory details so ft that’s what you think this post is about, then I am sorry (but not sorry) to disappoint you as only my mom and future therapist are privy to that bit of information.

William’s dad and I met as we had just reached adulthood, we met at a party just like most people did back then because Facebook had only just become a thing and tinder didn’t exist. Fast forward six years and we were married, three more and we had William, another three and we were separated, a now a year on, here we are divorced. I’m a little sad as I hold the papers in my hand, not because we are not together but because it’s not something I never thought I would do, and I feel it has ruined my thoughts on marriage because let’s face it, we don’t meet someone and think ‘gosh, you would make a great first husband’ I mean if that was going to be my intention, I would have at least married an old rich guy first, here’s looking at you Anna Nicole. 🤣

I was very grateful that at the end of our relationship, William didn’t have full understanding of what was going on, he knew things were changing and it destroyed his routine, but he wasn’t as aware as most kids his age would have been and although I am grateful, I do wonder if that was good for William or not. I spent months trying to keep William in some form of a routine and if it wasn’t for that I don’t think I would have gotten through it, it gave me a purpose, a focus. I mean it failed as it was seven months of hell, constant meltdowns, and shutdowns… he didn’t want me, he wanted his dad and that hurt, William cried, and I cried. Not for the same reasons but the same hurt non-the-less.

As time has gone on, things are much easier and we co-parent really well but as I have said before it hasn’t always been easy and we had to work on it, some days it’s not easy at all, as we are both very different people to the ones we had been when we met, when we got married and even when we separated. We just don’t really know each other anymore and that’s okay.
William has two parents who love and adore him, who would walk over glass to make sure he didn’t have to, and I guess I can’t really ask for any more than that… Do I regret marrying William’s dad? Not for a moment because I wouldn’t have William, or Rusty 🐾 I have never for a moment regretted having William. Do I regret placing so much trust in some one? Maybe. Has it made me more guarded? Yes, but that’s not necessarily a bad thing.

William’s dad is perfectly happy with his girlfriend, and they have William on set nights at their house, I can only hope that she takes on William as if he were her own, that she will love and care for him when he is with his dad. I guess that’s all we can hope for, isn’t it? That when or if our children’s other parent moves on, that their partner is willing to take on board our child. I wanted to continue hating her but how can I? my son comes back from their house, clean, healthy, and happy, and she has a part in that. So, I am grateful to her. The situation in which she came about doesn’t affect her ability to be a good substitute maternal figure when I’m not there or maybe even one day his stepmom. None of this makes me any less William’s mom, it just means there are more people in this world who love him and that can never really be a bad thing.

I’m not sure how William’s dad feels about my partner spending so much time with his son, but I do hope that he could talk to me about it, if there was an issue because I know it’s not easy to think of someone else stepping into that role when you’re not there, but you have to think of it from a point of positivity and not a jealousy or anger. I am grateful that I have found someone to share my life with, when I didn’t think I would trust anyone enough again, let alone so soon. I am grateful that my someone perfectly complements my personality, that we can just have fun with each other because I’m not going to lie, I had forgotten what fun was. He’s a brilliant dad to Little Miss and its wonderful to witness and to be allowed to be a part of. They have embraced William and I just as much as we have embraced them, and I hope that continues for a very long time.

I will file these papers tonight with all my paperwork and it will be done… and I’m glad, albeit a bit sad but it is time to draw a line under it. It’s nice in a way to know I am no longer someone’s wife, to be able to go to bed tonight, in the arms of my boyfriend and to simply be his girlfriend is something I have been looking forward to since we started dating.

So tonight, I am saying goodbye to Mrs Buckley… but you know what they say ‘a wife is only a wife until the end of the marriage, but an ex-wife is for life’ 🤣

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Posted in Emotions

Inclusion

Let’s talk about inclusion… as an adult, I can honestly say that I genuinely like my own company. It’s much harder to end up in an argument although not impossible. 🤣

We worry about our kids been included in the playground, getting invites for parties and things of the like but as a parent of a child with special needs inclusion is something we worry about for everything. Will I be able to navigate his adaptive stroller around that shop, do the disabled toilets have a suitable changing facility? Will that cafe or restaurant understand that he may be noisy and throw his food?

I feel uncomfortable in situations in which it is obvious that William is uncomfortable, it’s mainly because I still worry about what other people think and I’m not sure that will get go away but I hope it does.

I recently attended an event, or a gathering of sorts and I had the strangest experience, something that I have never experienced before; total all-encompassing inclusion and understanding. It sounds really strange to say this, but I have taken William to places that should have been safe for us, but they weren’t. I was terrified of doing a first new place/event, as I usually am because let’s face it, I can be the queen of anxiety and overthinking and believe me I had been doing a lot of it in the run up.  What if I William had a meltdown? What if people didn’t understand?

I panic about going to my parents or big nanna’s and they’re regular occurrences so its natural that I would panic about somewhere else, I often have my mom or my friend on a standby in case William doesn’t cope with new places or people and it’s a silly thing to think I have to do but it is just one of those things.

I guess what I am trying to say is sometimes you have to take that leap of faith, whether that is faith in a person, an event or yourself. If you’re not willing to try then how will you ever experience new things, how can you write people off as not understanding your child if you’re not giving them the opportunity to do so. In a world of people that can be judgmental and cruel, there are still people who are kind and accepting, people who include our children without trying.

Inclusion is something we all crave, whether we like to admit it or not, it can be in conversation at the dinner table, inclusion in a game of football on the park or in our case it’s the inclusion into society or inclusion into people’s lives. Its something we can take for granted when we are neurotypical, I know before having William it wasn’t something I even thought about but now the thoughts can be all consuming.

Today’s post it to simply say, think about what you are doing, think about the child that you may class as a little odd, think about birthday parties and events, think about how you would feel to be excluded, then think about how it would feel if the sole reason behind it, was because of who you were; something you have no control over.

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Posted in Emotions

The Fall Down

Autumn is my favourite seasons. The leaves change, Hull fair snacks are readily available 😋 Halloween 🎃, Bonfire night 🔥 and Christmas🎄 are right around the corner. I can almost smell the fire smoke in the air. It slowly becoming acceptable to put the heating on and to start wearing woolly tights and boots. The clocks will go back and dark cosy nights with candles, blankets and movies are just around the corner.

But then again, I hate this season in equal measures, some days it can’t decide if its summer still and its too hot but its raining and there is no physical way to be dressed appropriately and, in my opinion, it is cold and flu season…. Traditionally this falls between December and March but in my house, it always starts in the September.

In this new world in which we live, you can imagine the first thing that comes to mind when you start coughing and sneezing all over the place and genuinely looking like the walking dead 💀 I can handle being poorly, I don’t handle it well, but I handle it 😂 William being poorly is a whole different ball game. He can’t tell me what’s wrong, so it is a guessing game from the moment his behaviour changes until he develops full symptoms… is it tonsilitis? Stomach problems? The flu? The thought process gets pretty dark… what if its measles? Did I see spots? What if its Corona? Or Ebola? Or the plague? Or maybe, just maybe, it’s just a common cold.

I know my reasoning is pretty extreme, but my point is that it’s just never possible to tell what is causing the issue until the issue itself become apparent. William reacts to many situations by shutting down, this means he will withdraw from almost everything, he will barely eat and will try to sleep for avoidance. This could be because he doesn’t want to do something like leave the house or partake in a certain activity but could also be because I had to trim his nails, stopped him eating carpet fibres or didn’t let him smear the contents of his nappy. In some instance it’s because he doesn’t feel well. How do we know the difference? There is one simple answer… we don’t!

Its purely a guessing game… I have to evaluate everything that has happened prior to his shutdown and try to figure out. This means I have to be ultra-conscious of what happens on a day to basis and must be switched on at all times. This still means I have to try isolate what could be the problem and act appropriately, if in fact any action is necessary. On some occasions, no matter how much I analyse what has happened, I get it wrong and its simply because he is coming down with something but with no prevalent symptoms, it is impossible to know until it fully hits him.

I’m not going lie, sometimes it’s exhausting and sometimes when he cries, I cry but that’s ok because it doesn’t mean I’m a bad mom or a failure. It means I am trying my best and that’s all we as parents can hope for.

Despite this I do love Fall just not the downs that come with it 🍂 xx

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Posted in Brief updates, Dads Journey

Co-Parenting

Today’s topic of conversation is co-parenting. I wanted to do some research into the types of co-parenting, purely to make sure William’s dad and I are doing it right and hopefully improve upon it if necessary or make sure we are at least heading in the right direction.

There are 3 types of coparenting.

High conflict co-parenting

High conflict parenting is exactly as it sounds, it’s difficult for some to put personal reasons aside and focus on what’s best for the child. This is often the style used in the aftermath of a separation. This style of parenting can be detrimental to the child and makes it almost impossible for both parents to have equal say in the way in which a child is raised. Usually in high conflict parenting relationships one parents tries to maintain control of the child and their Ex, often being unable to make a courteous, decent, or even ethical choice for their child.
I read an article recently about the signs of High conflict parents and it is usually because one or both parents are narcissists, but this article was very informative on spotting the traits of the high conflict parent.

  • The blame is always on the other person, they themselves can do no wrong and often portray themselves as the victim.
  • They lie, they often don’t think of any repercussions or simply don’t care.
  • They seem to enjoy the conflict, relishing in the attention it brings them. Their behaviour can be classed as gaslighting, using your natural emotions against you to cause a reaction. It often means its their way or no way.
  • They use your child against you, refusing or restricting access. This may also include speaking poorly of the other parent in front of the child.

Parallel co-parenting

The most common type of coparenting is Parallel Co-parenting, this is usually when two parents are unable to communicate with each other but have learned to tolerate one and other but lead two separate parenting strategies with little to no discussion. It is possible to transition from high conflict to parallel co-parenting but can take lots of work from both parties and may result in legal mediation or court ordered access rules restricting the need for the parents to communicate.

Cooperative and collaborative co-parenting

Finally, we have the category that William’s dad and I seem to fall into. Learning how to co-parent is difficult but I don’t think we really had a choice, because of Williams additional needs, we had to make sure we were on the ball with it and singing from the same hymn sheet so to speak. This is the pinnacle of co-parenting and what all parents that are separated such be aiming towards. It’s kind of weird how when we were married, we couldn’t communicate but now we do it easily and without thinking. I would even say we have a sort of friendship (we won’t be having movie nights and braiding each others hair though 🤣) Our conversations are mainly about William but we can also ask how one and other are. He even went out of the way to have William so that I could recover from my shoulder injury and the flu. Don’t get me wrong both David and I would probably agree that it wasn’t easy to begin with but just short of a year on we have it running like clockwork. 🕒

I think with the way our marriage crashed and burned that it would have been easier to slip into high conflict and then just coast through parallel co-parenting, but we persevered, and it’s paid off because it was the right thing to do.

I guess what I’m trying to say here is that despite the past and any hurt, that we both consistently put William first, as any parent should, and I am grateful that we are able to do that. I remember my post announcing our split and how I wrote that we would be co-parenting, and that Williams dad would be involved in all decisions etc, but I don’t think I believed it at the time. Maybe writing it was a self-fulfilling prophecy?
Needless to say, I believe and always have done that both parents should have an equal say, rights and access to a child they helped produce and I am very proud of both myself and David for putting everything aside and working together to ensure Williams best interests are upheld and I hope we can continue to do so no matter what the future holds.

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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 EHCP Process

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 – May 2021

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

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

Williams 4th Birthday!

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

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

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

School Allocations

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

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

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

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

The Nappy Service

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

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

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

I needed this and it made me cry 😭

Impaction

Warning this is about poo! 💩

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

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

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

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

Return of The Big Nanna

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

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

Family 🥰

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

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

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Posted in Appointments, 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 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 😊