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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1578 days, that is how long I have loved you, and that isn’t including the time I grew you inside of me, but I assure you; I loved you just as much then as I do now. I have spent a total of 8 nights away from you, that’s only 0.5% of your life but from Saturday and until you start school, we will spend 28.5% of the week apart.
I would never have said a year ago, that I would be awake all night trying to comprehend these figures and telling myself that its going to be ok, that you will ok without me, that I will be ok without you.
I’ve spent almost 10 months thinking about how badly I need some time, ‘a break’ so to speak but I just wanted your dad to do his share because for the first four months through no fault of my own, you hated me. I could feel it and believe me, I didn’t like myself very much either at that point, but we got through it. The change in your routine blew everything apart, you struggled to eat, you lashed out and broke things, you cried, and I was beginning to think you didn’t know what sleep was but after 122 days; you slept. You slept in my arms after hitting me and yourself, but you slept, and it was a breakthrough or maybe a breakdown but you slowly got on board with your new routine and life got easier for both of us.
And here we are now, we have a good routine in place which is about to change once again and I don’t think either of us are ready for it but it has to happen. I never wanted you to have two ‘part-time’ parents, two houses or any of the other things that comes with separation. I wanted stability for you, I know how much you need that but somethings are beyond our control, but I tried and I want you to know that, I tried… for you.
What if you need me and I’m not there? What if you seek me for comfort in a strange new environment and I’m not there? I cant always be there but I wish I could and I needed you to know this. You maybe don’t understand this now but when you are older and can maybe read this you will.
You are without a doubt, the best thing that’s ever happened to me, my greatest achievement and the love of my life. I wouldn’t be the person I am today had I not had you and I am forever grateful for you and everything you are.
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 🤣
Do you know this woman? If not let me introduce you…
This is Genevieve Hyde, she is the former head of education at Wargrave House School and Specialist College in Newton-Le-Willows.
I struggle when I think about the fact I will have to entrust William into the hands of a school for more than 6 hours a day, it genuinely gives me palpitations and strikes fear into my soul but when you make that inevitable decision of which school to entrust your child to, you pray it was the right one and that they have the utmost respect for you children and their needs. That they have nothing but the best intentions.
Genevieve did something that as a special needs parent I find unforgivable, she made fun of the children in her care. In fact, it’s unforgivable to make comments about any child but she was in a position of power and trust! I have had friends and family make comments about my child and can honestly say they have swiftly been put in their place or cut out completely… this is someone who should know much better than to be so cruel, someone who chose to work in that field, someone who should understand.
Genevieve created a WhatsApp group with members of her staff in which she not only made comments about other staff, but about pupils in her care. It was the another member of this group chat that reported her for her comments.
She also made comments referring to her pupils as ‘window licking’ my question here is that although one of her staff members reported her, did they comment in return to the messages? did they tell her it was inappropriate? or did they go along with her?
Can you imagine how the parents of this school feel knowing they placed their trust in a woman who blatantly abused it.
This woman was trusted with the care and education of children like William, children who, as the name of the school suggests require specialist care. In May 2019 she was suspended under an investigation of misconduct. She was later dismissed in which she unsuccessfully tried to appeal. Thank God! However, despite losing her job, she is still allowed to continue in the profession and seek employment within specialist education. How is this an appropriate punishment? In a few years and this isn’t in the papers, this woman may be in charge of another child’s education, I wouldn’t want it to be my child!
Were parents at her school even notified of this when it happened or have they read about it in the papers and now wondering if it was their child she was referring to?
The world can be a cruel and horrible place…
Much Love M. xx
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I have been putting off watching season three for quite some time now as one of the main themes for this season is Alison and Paul’s separation and subsequent divorce. As you can imagine this was hitting a little too close to home, so I had to turn it off until I was emotionally ready, but I think that time is now. So, I dug it out of my Sky planner and started again since things are no longer as raw for me although I am fully aware my review may villainise Paul, but I will do my best not to call him a c**t throughout. I remember writing during my season two review that William’s dad and I needed to make a conscious effort to spend more time together so we didn’t end up like Paul and Alison, which is laughable now I read it back as he was already spending his time with someone else 🤣
Episode one… Oh dear god, I forgot just how much I love Christopher Eccleston as Maurice! I am sure I have said this before and will say it again many times, but when did he become the Grandad and not the leading man? Because I totally would 😍
Why is Alison blonde? It’s very off-putting… maybe it’s just that thing all of us girls do when we go through a breakup and try to have a glow-up. I’m mean I’m now a bloody red head 😂
The season kicks off in true A word tradition with Joe having a meltdown, he is seeing his dads new house for the first time, this isn’t the safe place Joe once called home. We like to think that wherever we are, is our safe place for our children but in some cases bricks and mortar mean just as much. This is hitting a little close to home. I hope I am ready to watch this 🤔 Especially as I have all this to come when William’s dad finds his own place. We do have a plan to slowly introduce William to the new environment and make it as familiar as possible which is why my spare bedroom has a mass amount of duplicated toys and furniture etc. Joe has ran away from the new house to seek comfort in the old house, he has no boundaries or sense of ownership and doesn’t grasp the concept that it now belongs to someone else. I chose to stay in my house after William’s dad left, some of the memories and lies that went on here hurt but this is my home, William’s home. This is his safe place. my safe place. our safe place.
Paul is angry at Maurice about the fact Joe has started to reject his headphones and music in which he usually takes comfort in, he’s saying Maurice taking Joe to the new house has caused this… obviously it’s not Paul’s fault for not being able to keep his dick in his pants 🙄 I’m grateful in a strange way that William is still very young and may not remember us as a family unit, hopefully he will just remember the way it is now. If he doesn’t remember, then he can’t be upset by it.
I think I have said this for each season’s review but I fucking love Maurice and Ralphs relationship.
Holy shitballs! Ralph has just announced he is getting married and moving out, Maurice looks like he’s about to keel over and after his collapse in a previous season, his high cholesterol and high blood pressure, this may finish him off. I do hope they don’t kill Maurice off as it would lead to such major heartbreak for Joe. Death is inevitable for all of us but the hole someone leaves when they die has a much greater impact for someone with autism. Rusty is now 7 and I am already freaking out about if something happens to him or he passes away. How would William cope without him? He sleeps on the landing outside William’s bedroom and in a morning, William lays on his side of the baby gate next to him just stroking his fur. How do you replace that kind of love, that comfort? You can’t!
Amen to that 🙌🏻 Amen to those tiny moments in which you don’t feel like a failure because I can tell you this in all truthfulness; they are so rare. It makes me happy that this has been vocalised. Honestly sometimes I feel like I have a VIP membership to the shit moms club and take responsibility for loads of bad things that are outside of my control. Some days, it’s my fault, it’s all my fault, it’s always all been my fault… but I know that’s it’s not but it doesn’t stop that guilty feeling which is why I often seek validation in my parenting from the professionals I deal with. Jane from the incontinence service telling me I was doing amazing boosted me more than she could ever have known.
I can wholeheartedly get onboard with this feeling, as a parent of a child with special needs you become so conditioned in have to fight due to flaws in the massively fucked up system, fighting for support, education, facilities, services, we have to fight for everything, and it ever gets any easier and it is hard to get out of that fighter mindset.
Stare at my kid – I’ll fight you!
Comment on why my child is in a stroller – I’ll fight you!
Let my child down – I’ll fight you!
Mess up his routine – I’ll fight you!
The list goes on and on and in soe instances a fight isn’t necessary and in some you have to fight harder than ever before. How do you learn to differentiate between the those that require a fight and those that do not?
Episode two and Rebecca is having a baby! It will be interesting to see how Joe reacts to someone taking his sisters attention from him, he is asking a lot of questions about where the baby is now? Where will it sit? Will it cry? Its almost as if he is preparing himself.
There is a beautiful montage showing Joe going to school and his relationship with his teacher, Heather. I don’t think I will ever see Julie Hesmondhalgh as anyone other than Hayley from Corrie, I half expected her to be wearing that red anorak.
I have just nicely received Williams draft EHCP (but we will discuss that in more detail soon) and it talks about describing transitions to William and its great to see it in action between Joe and Heather.
Mark had decided he isn’t autistic anymore because he has stopped banging his head and smashing up his mom’s furniture. Paul rightly explains that, that isn’t all autism is.
I am not ashamed to say I was crying at this point. Messy crying. Loud messy crying, well it started out silent but didn’t end that way.
They are using social stories as a communication method which again is something mentioned in Williams EHCP, so I enjoyed seeing it in practise. The story used to explain Rebecca’s pregnancy and what the baby means to Joe is really well suited to the situation, I’m guess that’s the point, but it makes me eager to start looking into these for when William reaches that level of understanding.
❤Ralph & Katie❤ Aren’t they just couple goals?
Joes’ attachment to Heather is apparently a problem, I don’t quite understand this, so I hope they elaborate more. I know first-hand about the disappointment that comes with attachments to professionals. We have seen it so many times when William forms attachments and then someone leaves or moves on in their careers that it can be catastrophic, also known as blowing William’s routine apart… Linda, Val, Sarah and even his dad. These people coming and going from his life have had massive impacts upon William routine and often cause a regression in his behaviours.
Episode three and there is a Ben? Who is Ben? Is it wise to introduce a new person to Joe? Is he new? I mean he will have seen him in the playground. I have spoken about introducing new foods but if your child doesn’t like a different brand of chicken nugget how can you knowing introduce new people? Especially if you don’t know they will stick around because after all people do always leave in one way or another. How can we as parents know if someone has the best intentions towards us? William can’t tell me if someone is mean to him or has hurt him. How would I know? How could I trust someone? Not only with William but with myself? After everything how do you even consider letting someone into your life again? It’s a hard thought to process so I think I will put that aside for now and revisit at a much later date.
Paul is upset that Joe has done things with Ben… He needs to go and fuck himself! Their separation was his doing! He had an affair! He can’t expect Joe not to have life experiences when he isn’t there, he made his choice and he need to accept the consequences of that choice.
This episode isn’t very Joe focused, its more about how the family is handling their other relationships. You kind of forget that these needs maintaining too. Joe wants his dad late at night and Alison simply drives all those miles to take him, I don’t have that option nor that kind of relationship with William’s dad but maybe one day things will be easier.
Episode four, Paul and Bill’s worried mom Sarah just makes me feel a little queasy. Their relationship is soo forced and the lack of chemistry is laughable.
Rebecca is in an antenatal class and her sheer discomfort takes me back to when I was pregnant with William, she looks utterly lost and frightened. I remember it very well, that feeling of wondering if you are ready, will you ever be ready and then the realisation that its too late to prepare and 9 months definitely isn’t long enough. 😂
Oh no Maurice isn’t Ralphs best man! How could he pick someone else? Who is this, Josh? Ralph has just told Maurice off for being pushy ‘You’re not my dad’ I like to say I’m good at foreshadowing so I’m presuming that his dad may make an appearance or there will be a revelation of some sort 🤷🏻♂️
I feel you Alison, I really feel you. You plan everything like I do and for the same reasons. This season my heart is truly with you and I don’t think it was before, it was easy to hate you as I saw a lot of myself in you and it was a projection on how I felt as a mother and sometimes still do.
Joe is overwhelmed at the prospect of the walk his mom has organised, he’s withdrawn and trashed his room… It’s a familiar scenario for me.
Ooh I don’t like the fact Ben has jumped in to back up Alison in a disagreement with Paul about how to handle Joe. Its not really any of his business and how can he presume he knows Joe well enough to comment! Strike one Ben, Strike one! ❌
More tears… not ashamed in the slightest! How can that not make you sad? My heart breaks for Joe 💔 Rebecca has convinced him to go on the walk, he turns up in true style with a hat, his headphones and a bubble gun 🔫 he seems happy even though he was struggling with the thought of the walk, he seems truly happy and its beautiful. There are even more tears #sorrynotsorry
Rebecca is scared that her baby may be like Joe, she feels bad for it as if it means she doesn’t want Joe. I think despite the fact there are many reasons I never wanted more children, the main focus is because I am scared, what if I had another child like William? I think it solidified it for me. What if William couldn’t cope with a sibling? I think I struggle with William sometimes so how could I handle two children let alone the possibility of two children with additional needs. I know people that do it and make it look so easy and I’m envious of them, but I guess I’m also scared for me, can I do that to my mental health? What if I have another breakdown? It was so hard coming back from that dark place; I don’t think I could make it out again? But then there is a new reasoning to my decision… do I really want two kids to two different dads? What if it didn’t work out? I never imagined my marriage would breakdown… forever doesn’t always mean forever, apparently forever means until someone else turns my head, the grass looks greener or life would be easier 🤷🏻♀️ Maybe I should become a spinster and then I can stop worrying about this stuff, I could collect Cats stuffed animals and refer to them as my babies, wouldn’t have to worry about introducing new people into Williams life then… a stuffed bunny never hurt anyone 🐇
I sense tension between Ben and Alison already… He wasn’t happy with the fact she said she would be coming up to bed in a minute and not straight away. Strike two Ben, Strike F***ing two!
‘Now I walk’ – Joe Hughes. They just let him walk? Is this normal? Should I let William do as he pleases, when he pleases?
I called it! Ralph’s dad has just arrived and its Owen from Corrie! Poor Ralph didn’t know he was coming, and he looks confused and unimpressed. It’s been 10 years, what did Owen Doug expect?
I love Louise, she is a warrior, the true embodiment of the phrase ‘tiger mom’. If I am half as good of a mom as she is, then I am happy 🥰
🤮 Sarah and Paul… I just can’t handle it, she is so awkward and his is a c**t so slimy.
Mark has offered to take Joe to the Zoo Park? I’m guessing this is like a petting zoo. 🤷🏻♀️ Paul has agreed to let him, but he is freaking out, I’m not sure if he is freaking out because Mark is autistic or because he hasn’t looked after Joe before. He’s responsible enough to have a job in Pauls pub but I do understand the worry, as I’m not sure how I would feel about it if it was William he was taking out but then again I don’t really trust anyone with him. I can count on one hand the people who have looked after him away from me, not including his dad… * Mom & Dad * Helen * Julie & Dave * Leanne and family * Danielle & Shannon
It’s a small list for a four-year-old but it took me a long time to trust anyone with him and that has nothing to do him having additional needs but more about how I felt as a mom.
Ralph’s dad is opening up to Maurice about how he felt so disconnected from his family due to Louise’s closeness with Ralph, I sort of understand this as I don’t make it easy for people to understand William the way I do. Although that being said it doesn’t justify the fact he abandoned Ralph! It does upset me that Ralph feels like he should apologise for liking his dad. Her obviously senses the tension his dad’s presence causes and it’s really painful that he feels that it means he shouldn’t like him. I do hope Louise hasn’t badmouthed him in front of him as parents should never do that to their kids no matter how much they are hurting or the circumstances.
It’s the wedding day! Louise and Katie both look stunning 😍 Maurice has gone to collect Doug for Ralph, that’s love. That’s pure and selfless. I really do hope he gets a last minute promotion to best man #MauriceForBestMan
Ralph is so happy his dad is there; I have genuine tears in my eyes. He truly deserves happiness after everything he has been through. Ralphs entire face lit up as he sees Katie walking down the aisle. Their vows are amazing, so lovely and very them 😊 Josh’s speech is good but I stand by my hashtag!
Paul keeps getting cockblocked by Bill which is the highlight of their relationship for me although if I have to watch Paul roll his eyes one more time, I swear to god I will jump into the TV and punch him in his throat 🤬
More tears, happy tears… Team Maurice!
Episode Six is the last in this series and there are no more to watch, no more have been made but season four is expected to be released in 2022 however this is yet to be officially confirmed by the BBC.
The episode starts off with Rebecca walking instead of Joe… Is the baby about to make an appearance? I love Maurice! He’s following her with a wheelbarrow haha 🤣 he has my dad sense of humour so if I was Louise (or even my mom for that matter) I would have murdered them.
Oh dear god, I hate Paul so much!!! and Ben, I hate Ben too!!!
Its Ralph and Katie’s moving day, their little house is lovely. Maurice sitting down with a drink and the TV remote after all the heavy lifting is basically channelling everyone’s dad ever! And yes Mr H, that is you too 🤣
And…… he’s out of here! Strike three for Ben! ⚾ Bye-bye dick head! He’s just railroaded Alison into a corner and forced her to end thing because she isn’t in love with him yet. He been on the scene like 2 minutes!
Louise silently breaking down in Ralphs old room is devastating, it feels so real and raw that it breaks my heart 💔 she is a superb actress.
Shitting hell Ben is back, well he’s not back but he’s still in the café with Alison. He’s pushing Alison and she has been hurt too much to open herself up like that and he should have been patient with her but its too late now. He redeems himself a little bit by doing Joe’s signature goodbye… ‘Hug or Handshake’ and Alison chose handshake, good lass!
Sarah and Paul 🤢 the slow cooker analogy is quite cute but that’s probably because it was Sarah’s way of ending things. Serves you right Paul, you c**t!
Can it be good? And I don’t just mean for our autistic kids but for us as their parents? Change never initially proves to be good for William but he does slowly adapt, I think if I had my way, I would make sure nothing changes in our lives, but I know that’s a naïve was to expect life to be. There are changes you cannot predict that you just have to react to and hope you are doing the right thing. There are changes we bring about ourselves that can be planned and brought about with a strategy. My inner control freak needs at least three months’ notice for changes 🤣
Rebecca has gone into labour and she is on her own in the car with Joe, he isn’t handling it well and just put his headphones on and walked off! I would love to know what that kids step count is.
‘Its private, I don’t want to see her vagina’ – Joe Hughes
Not the best way to tell strangers that your sister is about to pop out a sprog 🤣
Its very unrealistic to see the full bloody family in the waiting room, I know this isn’t set during the pandemic since I put it off for so long but it just feels even more unbelievable because of the current situation. Rebecca also has a ward to herself which is utter bullshit! 💩 I had a twin room and must have had at least 4 different cellmates roommates by the time I was discharged.
Aww Louise has finally told Maurice she loves him, even though we all knew it already. They are soo brilliant together 💑 They are engaged by the end of the episode which makes me very happy, its like watching your mom and dad get a happily ever after.
OK, so I am not sure how I feel about series three, the ending seems so final as everyone has their happiness, I do hope we get a series four. I don’t think I’ve enjoyed it as much as I did the previous two series, I am not sure if its because the primary focus was the aftermath of the divorce or because I didn’t learn as much as I had whilst watching its predecessors. Who knows? 🤷🏻♀️ I am looking forward to another series but it’s a long way off if ever.
If you have any recommendations of what I can review next let me know in the comments or drop me a message on the let’s talk page, I’m thinking Atypical but open to ideas 😊
Much love M xx
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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
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…
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.
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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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.
Very 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.
Profound 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 😊
I want to talk about Olga Freeman, I’m not sure if some of you will have already heard about Olga as she has been in the papers over the months, after she committed an atrocious act and murdered her autistic son after her support was taken away during the pandemic. I do not want to discuss the murder, but I want to discuss her mental health during this pandemic and not just hers but all of ours.
I cannot understand how anyone can do something so heinous, but I can understand the feelings she may have had during this pandemic and I think any parent of a child with special needs can too, in fact any parent at all…
That overwhelming sense of slowly drowning; of not knowing how you could possibly keep your head above water but in many parents’ cases we know we must, so most of us learn how to swim no matter the waters.
Lockdown has been hard for many parents, but I speak from experience when I say that it has been exceptionally hard for those with special needs kids, support was completely stripped, nurseries and schools were closed, activities and respite were stopped, appointments postponed so many times they became a mere memory and people were restricted from seeing loved ones who act as a huge support network.
I am incredibly lucky that when I became a single parent back in October, the support came in strong from unexpected places. I was suddenly in need of a support bubble and it came in the shape of my neighbours who have massively stepped up for me in a way most would not have. It came in phone calls from friends just checking to see if we needed anything and were ok. It came in doorstep drop offs from family members.
Olga did not have that, what she did have were doctors agreeing that she needed more support but the local authority failing to provide it… She knew she was struggling and actively sought help in the month prior to killing her son. I speak for many parents now when I say that local authorities are notoriously slow at providing support, if any…
Olga suffered a severe mental breakdown which led her to take the life of her son. I suppose my point of this post is to implore you all to check on your neighbours, friends and family who may be struggling but hiding it well. I’m not saying that everyone is capable of such a horrendous act, but everyone is capable of reaching breaking point.
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.
As a parent this is something, we always ask ourselves until our child reaches an age in which their own decisions can be trusted. As a parent of a child with special needs not only do you question your choices but you over analyse every decision you are forced to make but what do you do when that spills out into your own life? When the simplest of decisions can be agonising because you try to predict every possible outcome which proves impossible and life just becomes too overwhelming. When every decision comes back to haunt you?
The pressures of being a single parent to child with additional needs is immense, every choice reflects upon your child from simple things like buying a different brand of chicken nuggets by mistake or choosing the wrong school. They both seem like such opposite ends of the scale, but both have a massive impact on Williams life and the responsibility of chicken nuggets is a big one on its own without the other factors.
What if they stop making his chicken nuggets, when is the right time to introduce new chicken nuggets? I am aware it sounds crazy, but I need to think of these things and try to find a solution before they happen.
Sometimes things do happen in which there was no way you could plan ahead for. Somethings happen and take you so much by surprise that you do not know how you will recover or if you ever will but in some circumstances you thrive.
How do you deal with those situations? I feel like I have become more guarded. I feel like I have to step up and become super mom, I feel like there is a constant battle to ensure William has the best support, the best family, the right environment and so on… I don’t know if that’s a natural part of being a parent, a single parent or a special needs parent but it’s exhausting. I am exhausted! It so hard to maintain a good balance between being mommy and being Marie and I feel like I am losing myself. It sounds daft because you don’t get a break from being a parent, it’s not a job; it’s a privilege. You don’t get sick days no matter how poorly you are or how much pain you are in, being a parent is just who you are on a fundamental level. With this pandemic its difficult to find the time to stop and take a breath. It’s not as if William can go to his Nanna and Grandad’s so that I can…🥁… have a nap. (not very rock and roll of me I know) It’s those kinds of things that I think we all took for granted, I don’t think any of us really appreciated how much we benefited from the everyday interactions we had with our family and friends.