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.
Today was the day in which I should have had an update about Williams EHCP, I should have been able to figure out what the next steps are going to be for Williams education and find out if that slim chance of a special school allocation was within our grasp.
However today was not that day. No days are the days they should be and I an beginning to learn this… I need to prepare myself for these things as they happen all the time and yet continue to knock me for six. As parents we shouldn’t be continuously let down by those who are supposed to support our children and adhere to timescales laid out by themselves.
The EHCP has not gone to the moderators… Still! This is because the medical report needed and the Speech and language report have still not been received. These should have been submitted by 15th of February and its now 4th March 🙄😡
So now we are back in the waiting game… Next week or the one after. Who even knows?!
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.
It’s a strange time for everyone at the moment, no one wanted another national lockdown, but it was inevitable, and I do believe it’s for the best. I thought that after the new year I could get a little bit of my life back and can start having one but that will have to wait.
The problem with being alone is it gives you time to think and over analyse things such as school!! All the applications are in, the EHCP is in process and now I can only sit and wait and that is the bit I can’t cope with. The decision on special schools is usually made by the end of January so I should hear something no later than the middle of February but I’m now worried that they may be running behind on it because of Covid and I don’t think I can take it; the wait is already driving me crazy. If I go for worst case scenario which is middle of February, then its 35 days to wait. 35 days of freaking out about if he is going to get a place he so desperately needs and if he doesn’t, it’s even further away until the middle of April for mainstream allocations. I want to be optimistic, his EHCP is 90 pages long, his issues are profound and complex, and all parties involved have agreed it would be the best place for him but what if it just doesn’t happen? I have a whole new scenario to stress about. For someone who has lists about lists its really difficult to be able to plan for events you have no control over.
On a positive note, I have finished my level 2 in autism understanding and am awaiting my tutor to confirm if she passes the second module. I do feel confident about it to be honest and really enjoyed doing it, once my pass certificate arrives, I think I may do more, I have already scoped out two further courses; level 2 in challenging behaviour and a level 2 in learning difficulties, I think they will both come in handy for when I pick up some volunteer work when William starts school.
William is doing really well in his development; his eye contact has improved drastically, and he is getting very good at object exchange to show me what he wants. He even takes his own pots into the kitchen and only throw them about 10% of the time 😂 I know it doesn’t seem like a lot but to me it is amazing. To me a few seconds of eye contact can bring tears to my eyes.
We did have a few bad nights recently as William had some bowel issues 💩, he ended up in my bed for over three hours crying and needing me to rub his tummy. I wish I could take his issues away and make him feel better when he’s in pain.
I’m so grateful that nursery is still open during this lockdown as I am not sure how I would be able to work and look after him as he needs constant supervision. My head tells me that I should have made the decision to keep him off to protect us from potential contact with Covid but the disruption of his routine would also be hard on him and he has had enough of that recently. If possible I want things to remain normal for him.
We have lots of messy play planned for lockdown which I’m really excited about but may regret deeply 😂 We tried out slime in the bathtub which was super fun messy but totally worth it to see Williams face, not so much the having to clean the tub part.
Next on the list is finger painting so wish my upholstery good luck 🍀
Forgive the horrendous pun 🙏🏻 but I couldn’t resist.
What can I say about Christmas 2020? What can I say about 2020 in general that hasn’t already been said be everyone? I think this year I had more understanding of what William could and couldn’t handle at Christmas which made it easier for me to make sure he wasn’t overwhelmed.
Each christmas eve I have alway reads William ‘Santa comes to Hull’ I’m not sure why I made it a tradition as it wasn’t one I had as a child but I felt it made it a little special knowing he was on his way. This year William grabbed the book from me and and decided to show me it before I read it… Maybe one day he can read it to me 🥰
I’ve been poorly recently with a mega cold 😷 (100% NOTcovid as I had a test) and an injured scapula so the preparations for christmas have been hard physically on top of the usual picking up and carrying William and then the emotional toll of it being my first Christmas alone as a single mom which… If I do say so myself I totally bossed it 💪🏼
Every year without fail we all have always had christmas dinner at my mom and dads house. Christmas isn’t christmas without my mom yelling at my dad to get out of the kitchen or telling us there isn’t room for all of us in the small room, my niece eating more than her share of after eights and my dad hovering round with a bin bag asking if anyone can take it home 🤣 and even more so… it isn’t christmas without big nan. The first lockdown kept us apart for 113 days… so far on this teir 3 we are at 66 days and counting. Thats almost half a year! 😲 I know the rules for christmas day were relaxed but it wasn’t fair to potentially put anyone at risk with William going to nursery, his dad visiting him but working, my sister working and my niece at school… we all felt we would rather we were all here next year to celebrate properly (I’ve also told my mom she has to cook christmas dinner for us all once its safe to do so even if it is summer 🦃 BBQ turkey will not be accepted)
William came down christmas morning and started playing with some of his toys and opening some gifts at his own pace. When this got too overwhelming for him, he retreated upstairs and laid on his bed floor for a little bit until it was time to leave the house. My sister thankfully allowed William and I to go for dinner (the covid test probably helped in that decision😂)
Before I had William I hated Christmas and as William doesn’t usually cope with the festivities I was getting this way again but this year I realised I love it, I love the opportunity to see all our family whilst we aren’t working, to eat good food and just be happy. I think Christmas 2021 will be appreciated so much more than any before it by everyone.
William really enjoyed his christmas dinner and when I say that what I actually mean is he actually ate it this year and pudding too 🍰… I hope his nanna doesn’t take this personally against hers especially after my dads comments last year #dry 😂 We took some of his sensory toys and his tablet so that he could freely do what keeps him happy such as watching ‘Little Baby Bum’ on netflix and biting things 😁 The reason his does this is for oral stimulation… If i’m not careful he tries to eat the fluff on my dressing gown, paper, dog food or his own poop 🤮. I do think William may have an eating disorder called Pica which is relatively common in those with autism or developmental conditions.
When we got home he was ready for round two of presents 🎁 and to spend some time with his dad, which was nice as he got to see him open some gifts too. We ate left over buffet from christmas eve (yes we had room and no I didn’t cook it; it was a cheeky morrisons order) and relaxed in our new PJ’s until bed time.
Williams weighted blanket from big nan was a smash hit but he wouldn’t share it with me, in fact when I tried to cover myself with my own blanket he decided I wasn’t allowed that either😲
Overall this Christmas (year even) wasn’t the one anyone imagined we would be having but to me its given me a whole new appreciation for the festive season and how important it is to spend time with your family. I’m not saying that this time next year I wont be writing a ‘Jingle Hell… Pt.2’ based on last years post but I think I am more prepared now, I can see what triggers William’s meltdowns and can try to prevent them in advance.
I really hope you all had a wonderful christmas or at least got very drunk to block it out🍾 We will all have a re-do for 2021 and it will be the most magical christmas any of us have known, wouldn’t it be amazing if it was a white christmas too ⛄
Its approximately 28 hours until we can say goodbye to this terrible year, I am still working hard on my Understanding Autism level 2 so I may not get the chance to wish you all a happy new year after today but remember, it can not be any worse than this year. Much Love M. x 😘
I just want to take this moment to say am truly sorry for the radio silence recently. I just wanted to give you a little update of what has being going on. I decided that when William goes to school I want to make the most of my days off work and ideally would want to volunteer with children who are like William, I’m not sure how yet or where but I want to help people so I decided to do a Level 2 in autism understanding but sadly that means my free nights A.KA when William is asleep (or should be 😴) are currently being taken up with working on my assignments.
My first assignment was handed in and thankfully I have passed 🏆 So I just need to smash this next one out of the park to warrant a pass as a whole and who knows I may even decide to do further courses to develop my knowledge.
You will have my undivided attention again after 7th January when I can hopefully share my success with you all. I will be posting a William update over the christmas period but until then I wish you all a very merry christmas albeit a different kind to the one we are used to but a happy one nonetheless. 🎄
So let me just take a moment to acknowledge how difficult things have been recently, William is sleeping less than usual and seems to be having more issues with his bowels than ever before… this means a grumpy, exhausted and sometimes hangry mummy at the best of times. Why did I chose before christmas to go on a diet. I’m missing out on soooooo many boxes of celebrations 😭
As someone who is not afraid to state that I am a pessimist, very neurotic and an overthink you can imagine how I feel going into any meetings and today I was filled with the same amount of dread, not because they’re awful but because no matter how prepared I think I am it never feels enough, at least emotionally. There we go… self pity over with. 🙃
The meeting was attended by one of the wonderful ladies who work in the special needs room at William’s nursery, the early years senco and myself… a smaller audience than last time but that isn’t always a bad thing.
Williams EHCP has been agreed to be assessed!!! 🎉🎉🎉 a huge relief that we havce gotten over the first hurdle and I don’t have to take it to appeal. It is now with the moderators and I am awaiting the educational psychologist to reach out and conduct their own assesments on William, after that has been done it will go back to the moderators who will band his assesment as either intensive, severe, high or support plan only and some time after that we will be sent the draft to approve. It feels like it has taken a long time to get to this point and even though we aren’t quite there yet it is a step in the right direction.
I love a good table so here is one showing Williams improvement over the last 6 months… Just look at all that green!!!! 🤭
Area of Development
Previous age range
New age range
Self Confidence & Self Awareness
Managing Feelings & Behaviours
Listening & Attention
Moving & Handling
Health & Self Care
The nursery has advised there has been a little bit of a regression recently and I had to explain about all the changes at home which they understood and will put a plan in place going forward which is amazing, they are brilliant with him and I would recommend them to anyone.
I didn’t want to send William to a mainstream school, I felt it was admitting that a mainstream school can accommodate his needs and I don’t believe they can however today a little bit of reality hit me… I had discussed with William’s dad about keeping him out of school until he gets a place within a special school, it would mean we would have to rely on each other for child care in order for us both to work but we said we would do it however when I mentioned this at the meeting, the senco told me he may not get a place this year, next year or the one after and because their allocations are needs based there is no guessing the outcome. I knew… deep down I did know that it was a possibility but hearing it outloud was hard, I cried (thank god my webcam wasn’t on 🎥) I was very vocal at admitting that I don’t think myself or William are ready for this next big step. It took me two years to send him to nursery! However putting that aside, I have chosen three schools based on recommendations on their SEN facilities and Ofsted reports and when I am ready I will submit his application, its not due until 15th Jan so I may not be ready until Jan 14th but… I will do it because it is what is right. I think deciding to keep him out of school for a year was a big step but if there is no definitive end date then it is simply impractical and unfair on William. They have told me that they will continue to ensure William is thoroughly supported no matter the setting which based on the senco’s promises previous I 100% believe. We have a meeting penciled in for March to discuss his transition from nursery to school as I ideally want to increase his days at nursery after easter so that it isn’t too much of a shock for him going to 5 full days.
Special school allocations are announced the end of January/February and mainstream are announced mid April so I will have time to prepare no matter the outcome but it is going to be a long couple of months.
I want to end on a laugh so let me tell you about William’s girlfriends at nursery… William doesn’t really interact with other children however there is a girl in his class at nursery and she has has taken a liking to him and hugs him really tight every time she sees him to the point his key workers have to pry her off either so she doesn’t strangle him or after William gives them the ‘help me’ look.🤗 So girl 2 doesn’t like William but she does like the sofa he has claimed in the reading nook, William doesn’t want to share his sofa so what the ladies do is seat them at separate ends of it. The girl is fine and quite happy but not for long… William lays all over her until she gets upset and then he laughs! and my mom tells me off for calling him a psychopath! 😂
I have written previously about death by indifference in a previous post, check that out here but if you don’t want to read it in full here is a little summary. It details the deaths of 6 people who had special needs and how failures in the care system surrounding vulnerable patients (particularly non verbal one) lead to their early deaths.
Today I want to talk about Betty Wattenbarger and Coco Rose Bradford, two very young girls with autism who sadly died after seeking medical treatment.
Coco was 6 years old was admitted to The Royal Cornwall Hospital in summer 2017 with stomach problems, It shouldn’t have had any effect on the treatment she received but Coco was autistic. She was vomiting, had bloody loose stools and couldn’t take in any fluids. A quick look on WebMD and it tells me that fluids are most definitely needed based on the symptoms, no matter the cause.
It also to me (no medical training at all) seems like common sense but this didn’t happen, she was sent home only to be brought back to hospital the following day despite the hospital staff telling her parents she was ok. The staff missed several opportunities over the course of 8 days to establish what was wrong with her and save little Coco’s life, but they didn’t. After Coco died it was discovered she had an E-Coli infection and Haemolytic uremic syndrome, the doctors and staff on duty said they found Coco uncooperative and non-compliant when questioned about the little girl’s death. As a child I was terrified of hospitals, doctors, needles and would fight my mom if she tried to give me medicine or clean a wound (this is why I had a piece of glass stuck in my knee for over a year 😳) imagine being autistic and having those feeling plus a million more running around in your head without been able to tell anyone what is wrong. Just like most parents of autistic children Coco’s parents knew something was not right and spoke on her behalf imploring the hospital staff to help her but it fell on deaf ears. The NHS has admitted key failures in Coco’s care following a report.
Sadly Bettys story is very similar, she was 7 years old, she had autism and was nonverbal, in 2019 she was struck by a fever in which was severe enough for her parents to seek emergency medical treatment in which they were advised by a nurse practitioner that it was just the flu and sent home with pain relief. No testing was carried out despite her father displaying concerns about her breathing. Sadly, she died the following day. He dad described the moment she was gone as the light leaving is house.
Her family believe that had it not been for a misdiagnosis she would still be alive today, if they had seen a doctor she would be alive today and if she had been able to tell them how much pain she was in the she would have received the correct level of care and not have died. The Texas medical board have refused to confirm if they are carrying out an investigation.
I speak from experience that when your child cant tell you what is wrong it can be difficult but you learn to know your child like no other and the thought of those that are supposed to help them refuse to listen is terrifying. We are naturally protective over our children but what if no one listens? What power do we have to get those that should be helping to listen to us? It is a terrifying thought. These deaths are becoming more and more frequent. Is it death by indifference? Or death by ignorance? How can a 6-year-old not be treated because she was uncooperative? What 6-year-old on this planet is happy to be poked and prodded by strangers when poorly?
We need to keep talking about Autism. We need to educate teachers, doctors, and nurses. We need to normalize it. It is not a taboo subject, 1 in every 100 people in the UK is diagnosed as autistic. It is not uncommon. Why aren’t we teaching about it in schools?
I work in an office (pre Covid) and often have to have to catch up on new systems and safety procedures so why aren’t medical professionals being made to educate themselves on developments in diagnosis’?
It is a strange feeling to know that it will always be me who will get up to soothe William in the night, always me that will get to kiss him goodnight and always me who will be bitten and hit during meltdowns. I never imagined I would have to try and coparent with anyone who wasn’t my spouse and it’s hard to have to stay in such close contact with someone who has hurt you so badly but it isn’t about me, its about William and he has and always will come first.
That being said I am trying hard to keep my own mental health a priority too, I have made it no secret that the last time I had a lot of changes in my life I had a breakdown and went to a dark and scary place but I came through it with a lot of help but only once I able to admit my feelings. I am very lucky to have an amazing support network who I can be open and honest with about my feelings. I can cry, shout and be irrational without being judged and I am so grateful for that.
There are many things that I am so thankful for right now. After weeks of practising William has finally mastered his first Makaton sign… I don’t think it will surprise anyone when I tell you it is for food. 🥗 that boy loves his grub! I am going to slowly introduce more signs and have invested in the Makaton core vocabulary stages 1-8 book, I bought this direct from the Makaton charity so that I know the money is going to the right place and would recommend anyone to do the same. I will keep you posted on any further developments when it arrives. Check out the video here.
William also got his first grazed knee, he was outside playing and fell which shouldn’t be a good thing but… it was the first time he put he hands out to stop his fall. It was not just a fall because he lost balance, he fell because he was excited and trying to run. He reached out to me for comfort and as I held him, he stopped crying. That wasn’t usually something I could do as he always sought his dad for comfort.
We are missing Big Nan loads 😥 Sundays aren’t really Sundays with out seeing her or having her Sunday dinners 🤤 I worry that when national lockdown ends we will go straight into localized restrictions. I know she is missing us just as much. When we call her and she asks William for a kiss, he starts kissing the phone. He does not do this for anyone else. Their bond is amazing despite spending 113 days apart in the last lockdown, not that I counted 😳
We have had many sleepless nights recently whether its because William is still adjusting to his new routine or because the poor little guy always seems to be poorly, he manages to pick up a cold more often than some people change their underwear. I swear that boy has had a constant runny nose since he was two years old. Then there are his bowel problems which means he either can’t go to toilet or that when he does they are massive explosions of nastiness… But with the help of lots of coffee and cuddles we have survived them.
Before I sign off I want to tell you about one of my solo fails recently and I apologise if I have told this story in a previous post… William had a huge explosion during our first week alone, I’m not going to lie for a few seconds I freaked out. We were in the living room, so I stripped him off and made our way to the bathroom (which is downstairs) through the kitchen. His hands were covered in poop and I managed to prevent him touching anything except the bathroom door. Swiftly plopped him into the bathtub and hosed him down with shower, William hates bath time but seemed soothed under the stream of water and as there was no risk of drowning I left him sat in the empty bath running his hands under the shower head… My plan was to disinfect the door which was easily done and then quickly grab his dirty clothes and nappy so we could go straight back into the living room to continue whatever it was we were doing (most likely watching Little Baby Bum on Netflix📺) I’m not going to lie, I felt pretty chuffed with myself but as I pushed open the living room door that soon changed… there was poop everywhere!!! The dog had destroyed the nappy and my clean living room now resembled a port-a-loo at a festival 🤮 needless to say the experience was most definitely a learning curve and since then the dog is not left unsupervised with shitty nappies.
Oh and check out this picture, my DNA runs strong in this one…