I think I have been pretty vocal about how all appointments and referral seem to go round for us but I held out hope (in vain) for our most recent one, to the nappy service 🚼
Let me put a little context to this. William is 3 years old but developmentally under a year. Due to his physical age he is the highest available size of nappies. He is not currently able to be potty trained as he isn’t aware of when he needs to go toilet or if he is he is unable to communicate this as of yet.
William also suffers from a lazy bowel and it doesn’t always function and it should so mild laxatives are often needed to relieve him of discomfort as he can go over a week before naturally being able to pass a stool. As you can imagine the build up of waiting to go natural or the explosion of laxatives puts any nappy to the test but imagine this happening when there isn’t any that will fit him 🤢
William also displays sensory seeking behaviors and unfortunately this involves a fascination with his own faeces. The will result in him smearing the contents of his nappy over himself and his surroundings and on occasion he has put it in his mouth.
On a night we have had to put him in a onesie to stop him taking his clothes off and removing his nappy. Unfortunately for us the little Houdini has now learnt to remove a onesie as you can see below… thankfully he was busted in time and put back into his clothing jail.
We were worried as he gets bigger what will do and we were told that there is a nappy service in our area which provides children with special needs nappies in bigger sizes which is amazing. However nothing is ever that simple.
Let me start from the beginning…
Our GP sent a referral to the community nursing team
The community nursing team rejected this as he is under 4
NO ONE NOTIFIED US UNTIL WE CHASED THE REFERRAL
Our GP sent a referral to paediatric medicine
The sent it back to the GP with advice to refer to community nurses or the learning disability team
NO ONE NOTIFIED US AND OUR GP CLOSED THE REFERRAL
I chase the paediatric medicine team who told us what they had done
I call the GP and they tell me to call the community nursing team
I call them and they only know about the original referral and won’t accept another one as he is still under 4
I call the GP and have to tell them exactly what the paediatric medicine team have told me
SUDDENLY NOW I HAVE TOLD THEM WHAT HAS BEEN SAID THEY CAN SEE IT ON THEIR SYSTEM
They can not help as the person who deals with referral is off (I don’t think they’ve ever been in the office when I have called) but a manager of the surgery will call me back
Kerry calls me and has no idea why she is calling me. She thinks it’s regarding his autism assessment.
I HAVE TO REPEAT THE FULL CYCLE AGAIN WHILST SHE REPEATEDLY TELLS ME SHE DOESN’T KNOW WHATS HAPPENED
She is going to call our health visitor and William’s own paediatrician for help and call me back
She calls back, she has left word for the health visitor but doesn’t know if she can help. She has called CAMHS (children and adult mental health services) and they can not help. She has called learning disabilities team and they can not help and she doesn’t know what to do.
WELL KAREN (SHE IS NOW A KAREN, I HAVE DECIDED) NEITHER DO I AND IT’S NOT MY JOB TO KNOW!
She will send me some links to places that can help.
DO YOU KNOW WHAT SHE SENT ME… A LINK TO A CHARITY SHOP AND A SITE TO SUPPORT ADULTS WITH AUTISM. SO FUCKING HELPFUL!
I found it hard not to cry or be angry whilst on the phone with Kerry/Karen and I’m sure she could hear the break in my voice when I asked her ‘what are we supposed to do now?’
And that is the question, what do we do now?
We can’t be the first parents who have come across this, we can’t be the first to be in this situation. What happens when you fall into the gap? Do we just stay there for 8 months and have a bare bottomed child or tie a carrier bag to his waist?
If I failed to change and clean his bum for him when he was physically under a year old then I would have been classed as neglectful but what about now? He isnt physically under year but developmentally he is still in the same place. Am I being neglectful? Or are the services in place being neglectful by allowing this?
The purpose of literature is to turn blood into ink.
I am well aware that the above Eliot quote is not actually a direct quote but it fit nicely with my reason for today’s post. William’s dreaded blood tests.
Back in January we went to see that delightful paediatrician that told Dave off for fidgeting and spoke down to us, not that it bothered me or anything 😡 She told us that she would refer William for some blood tests; two samples needed… * One to check for anything in his blood that indicates something may be medically wrong with him which means autism is a symptom and not the cause. * And the other to send for genetics testing; this will confirm our rule out genetic conditions that have or can be passed down.
Jan 22nd – Paediatrician
March 24th – Lockdown
May 18th – Paediatrician
May 26th – Blood test
June 8th – Blood test
The Paediatrician told us it would be a few weeks until we received a letter so when we were at at TAF meeting at the beginning of February and Sarah told us it wasn’t on his record yet but that wasn’t uncommon we weren’t worried. BUT THEN… LOCKDOWN HAPPENED! 🔒 Things were still happening and a telephone appointment came through for a different paediatrician 🙌 it didn’t explain what would be discussed so understandably we were nervous. I’m not sure who called but it wasn’t the first paediatrician or the one mentioned on the letter. It was a gentleman who sounded like robocop with and a strong accent and poor phone signal.
He had called to discuss Williams blood test results 🔮 you know the ones he hadn’t had yet!!
⏩⏩⏩ fast forward a few days and I get a call to say we can attend a blood test at Kingswood that afternoon, it wasn’t possible as we don’t drive and it was already 11am and by the time we had gotten 2 buses (baring in mind I haven’t gone out in public for over 60 days) we would have missed the clinic. The next one was 26th May at his paediatrician office so we went for it. Only one person could attend and it was too short notice to post a letter out to us so it was sent in a text form instead. 📱 this contained a link to a letter about what happens at these appointments, let me go through it and tell you how useful this was to a child like William.
At the appointment we will talk to your child to explain what will happen and what we need them to do during the procedure. You may wish to bring a favourite toy/book as a distraction. This is brilliant! Three years of not been able to communicate the most simple of things like ‘Don’t bite me’, ‘Get down’ or ‘That’s Naughty’ but suddenly they are telling me that they will explain how and why they are about to restrain him and jab at him with a needle. People often ask me when we go out why I haven’t brought any toys for William. There is only one answer… William doesn’t play like other children. He isn’t interested in conventional toys and often retreats into himself in lieu of ‘playing’
Depending on their age and size,your child will be asked if they would prefer to sit on their parents/guardians knee. This not only gives comfort and reassurance to your child, but also helps as you are able to hold your child still for the test. Again you can ask William what he wants but he wont acknowledge you, If he isn’t sat on Dave’s knee then he would have wandered off from the room and this wouldn’t give William comfort as he only wants to be held on his terms. Imagine trying to restrain a pissed off octopus 🐙
We have a local anaesthetic spray that we can apply to the skin prior to blood being taken at the appointment. The spray is very cold and will help numb the area.
Please inform staff if your child is diabetic or is being investigated for diabetes as this may affect use of this spray
If you do not feel that the cold spray is appropriate for your child you may prefer to use a topical numbing cream. As it takes some time to work this will need to be applied before coming to the appointment. You would need to contact your GP for a prescription for this. Talk to your pharmacist about how to use the product correctly before your appointment
If requesting or purchasing the topical cream please take a copy of the appointment letter ad this consent form into your GP surgery or pharmacy. So these four bullet points all relate to a numbing spray or cream. Should I have needed the topical cream for William then it would have been near on impossible to obtain. Called on a Friday, this link and text not received until late Friday afternoon. Bank holiday Monday. How would we have gotten into doctors? Let alone take our nonexistent letter in to them. No even going to address a consent form since it wasn’t mentioned nor sent.
Dave does all the bad appointments; you know the kind like injections or ones with people who just put your kid on edge and now blood tests, it’s not because I don’t want to take him but because he knows I would fall apart and be useless.
The first thing they asked David for when he arrived was Williams urine sample. You know the one they didn’t ask for. The one that isn’t mentioned in the text we received nor in the bullet points above. 😕 The gave Dave a vial to obtain a sample… a sample from a child who relies 100% on nappies, what is he going to go follow him around and wait for him to start weeing everywhere? They are now sending us a pack out in the post to use in his nappy. I think its just a sanitary pad kind of thing as that is what they gave us when he had been admitted to hospital.
The freeze spray was good as it made William giggle like when we put sun cream on him. Whether it numbed the area adequately is a different question to one in which we don’t have the answer for but I hope so.
💉Ever heard of a technique called dripping? I hadn’t so when Dave came home and explained that they hadn’t been able to use a needle so they let blood drip down his hand into a vial. He explained his hand was covered in blood… I’m not going to lie I freaked out! Surely this wasn’t an appropriate way to take blood? So i went straight to the internet and I couldn’t find a single thing about it on google. I read 225 pages of the WHO guidelines; best practices in phlebotomy and there was nothing in there either.
Luckily I am a member of a group on Facebook full of parents in my local area who’s children have SEN. Several of them immediately jumped onto my post to my mind at ease. It is actually a well used method called the ‘Gravity Method’ which is basically where they stab the vein with a needle and let gravity do its thing so that blood drips into the vial until they have a adequately sized sample.
Unfortunately they only managed to fill one vial which is marked for his genetics testing and will be sent to Leeds. This means that poor William has to go through this again in a few weeks time.💉 Thankfully they are doing a home visit next time so hopefully in his familiar surroundings he will be more calm and distractable 🤞 I will just need to make sure I have baked another treat for William once its over since despite the ‘trauma’ it didn’t stop him eating two large pieces of sponge cake.
So now the only thing we can do until the next blood test is to wait for the results of this one vial. Genetics testing recently has been taking less than 12 weeks for results however some parents have waited an extraordinary amount of time so it’s just something else we have to wait for, another count down.
Anything in this world has people who are ‘For it’ and people who are ‘Against it’ this applies to everything… here are some easy ones Pineapple on pizza ✔ Milk in a coffee first ✔ Free TV licence for pensioners ✔
When it comes to certain things people often take a leap of faith in the hope that what they are routing for is for the overall good. Then you have those people who are unable to take that leap who will cling to the edge of cliff by the smallest bits of earth. Until very recently I have always ignored the ‘Anti-vaxxers’ but recently I have found the whole concept very engaging; forgive me if this gets a little ranty.
Jenny McCarthy; a world famous immunisation microbiologist has claimed… no wait. Sorry that isn’t what she is famous for. She is in fact famous for getting her cooch out for magazines. This obviously makes her thoroughly educated to be able to accurately dispute the effectiveness of vaccines. Well not the effectiveness so to speak but the side effects. She has continuously spread the disproven idea that vaccines cause autism. More specifically the MMR vaccine which coincidentally is given at the same age in which Autistic tendencies begin to show. Correlation does not imply causation! Her son Evan was diagnosed with Autism in 2005 which she categorically claims was caused by a vaccines. Experts have since claimed based on his symptoms that he was misdiagnosed and he actually has Landau Kleffner Syndrome. Something in which she vehemently disputes.
She has claimed on numerous talk shows that Chelation Therapy has helped her son recover from Autism?! There is no cure for Autism! It is not a disease! It is a disorder meaning an irregularity, disturbance, or interruption of normal functions. Chelation Therapy is used for patients with metal poisoning, certain vaccines contain mercury (not the same as fish) which causes for Autism 🙄 and C.T uses drugs to bind the metals in your body so that they are expelled through your body when you pee. C.T is dangerous and if not done correctly can result in death! 1 in 100 people in the UK have been diagnosed with Autism. If there was such a cure this would be going down and if vaccines causes autism this figure would be much higher. C.T comes with risks of kidney damage, heart failure or even death. I’m sorry but I would rather have an Autistic child than a dead child!
Lets take a moment to discuss Dr Andrew Wakefield Andy Wakefield. In 1998 he carried out a study of 12 children to try and establish a link between the MMR vaccine and Autism and published his findings in a medical journal called The Lancet. However his findings were completely speculative and had no fact based proof to back up his results and the results he did publish were embellished. To make matters a little more convoluted Wakefield had failed to disclose that he was receiving funding from lawyers that had been engaged by parents in lawsuits against vaccine-producing companies. It took up until 2010 for the The Lancet to publish a retraction which ended up as a small, anonymous paragraph hidden in the journal, on behalf of the editors. I suppose its like any article weather its in a local paper or a national one, online or on Youtube etc the big headline is what you remember. Not the small apology in the back. People never read the small print. Have a loan, 0% interest free… miss a payment and we take your soul 🔥🔥🔥 Wakefield falsifying his results will forever be one of the biggest and most serious medical frauds in history. Scientists who publish their studies have an ethical responsibility to ensure the highest standards of research, data collection, data analysis, data reporting, and interpretation of findings; there can be no compromises because any error, any deceit, can result in a lot of cases with severe health implications for patients or even death. In 2010 the British Medical Council banned Wakefield from practising medicine within the UK for repeated ethical lapses, including conducting invasive medical procedures on children that they did not need!!! Conveniently Wakefield has also applied for a patent on a design for singular vaccines to replace the MMR one… You know because pharmaceuticals in where the money is at! 💰💰💰
I can completely understand why parents of Autistic children can easily jump on this bandwagon. I still have moments in which I blame myself for Williams Autism; Could I have done something differently? Was is that 1 puff of a cigarette before I knew I was pregnant? Was my BMI too high to have a baby? was it because I had gestational diabetes? I know it isn’t any of these things but if I could just pick one to blame in those moments I blame myself then I think I would cling on to that because ‘Its just one of those things’ doesn’t really help placate most people and sometimes not even us.
I have done a lot of reading about celebrities and their very public views on vaccinations, I have never been someone who put much thought in to what celebrities endorse and what they don’t however I know there are millions of people out there that follow their celebrities like religious idols. Even if they are the Jenny McCarthys of this world.
Whilst searching for celebrity opinions I found that Kristen Bell (Veronica Mars/Gossip Girl) had some really wise words regarding her decision to vaccinate her children published in The Huffington Post back in 2015. ‘I couldn’t rely on word of mouth, facts were my friends and it’s been proven that vaccinations work and that enough for me to make my choice and let all other mothers know it is safe, It’s important and much bigger than emotions; it’s the truth.’ 🙌
Coronation Street recently ran a great story line about the potential ramifications of not vaccinating our children which was brilliant to see played out and hopefully opened up some eyes about not only what could happen to your own child but others around them.
Anyone that knows us personally will know I am and always have been a very opinionated person and in case you haven’t clicked on just yet, I have super strong opinions about vaccinations. I completely understand if you want to put your own child at risk. Actually scratch that, No parent should ever knowingly put their child at risk! By choosing not to vaccinate, you are not only putting your own child at risk but also those they come into contact with. You wouldn’t go and see a new born baby or elderly relative if you had the flu or a tummy bug but if you haven’t been vaccinated you could potentially be carrying something much much worse. In 2015 there were more than 140 thousand deaths from Measles worldwide. Most of these deaths were in children under 5 years of age. Would you want your child to be on of those statistics? or be the cause of someone else child being one? I know I would never forgive myself either way.
When the vaccine for Polio was released parents queued up for hours and hours to get one for their child… I imagine it been a bit like trying to get into ASDA during this lockdown.
The president of the USA advised his stance on vaccinations during his presidential campaign (and he still won😳) he didn’t actively stand against vaccinations but advises against full doses. Advocating for smaller doses over a longer period of time. To slightly misquote one of Greenday’s worst songs (but best albums) American idiots even swap bodily fluids with strangers to purposely get their children ill. Hello!!! HIV!!! Now 10% of parents in the USA skip certain vaccines and 1% don’t get any at all. Measles was once eradicated in the USA. In Minnesota more of the population in that one state has contracted measles than every other state in the USA combined. This state was heavily preyed upon by Andrew Wakefield and other Anti-Vaxx activities due the large amount of ethnic minority groups in the area. Wakefield preyed upon parents particularly within the Somali communities. Meeting privately with hundred of Somali parents and barring journalists and other medical professionals from attending. Since these meetings the rate for vaccinations within that community dropped from 92% to only 42% In 2014-2015 a Measles outbreak infected 147 people across seven states, Mexico and Canada. High school students were sent home because of infected classmates. One patient who was unknowingly infectious visited a hospital and exposed dozens of pregnant women and babies, including those in the neonatal intensive care unit. Another adult patient was hospitalised and on a breathing machine for three weeks.
Dr Bob Sears, famous for his dangerous views on vaccinations has been quoted saying “Vaccines don’t cause Autism except when they do” This man who should be an ethical man. He has taken the Hippocratic Oath – I will prevent disease whenever I can, for prevention is preferable to cure. He wrote ‘The Vaccines Book’ in which he recommend alternate Vaccination treatments and schedules despite there been no proof of this been effective. His book has brought him in a revenue of 20k a month since publication. That’s over 2 million quid!!!! He obviously has no ulterior motives… 🤑🤑🤑 Wanker 😡
Dave’s opinion – Yes he is allowed one occasionally. I feel vaccinations are a pivotal part of our healthcare system. I understand that there is such a thing as ‘herd immunity’ which helps protect those who can not get vaccinated for legitimate health reasons. Those who have weakened immune systems are unable to get certain types of vaccine and rely on ‘the herd’ to keep them alive. However this only works if 19 out of 20 people have been vaccinated. The ‘Wakefield’ study was proven to be falsified and the “good” doctor was disbarred however people still quote him as the pioneer that established a link between the MMR vaccine and Autism when there is in fact no link! He goes and does public speeches in America about it and spreads his lies putting more and more people at risk every single day.
There as two types of English language when it comes to scientists and doctors; the main English language and the medical English language. ‘There is no evidence of a link between vaccines and Autism” Read into that statement as you like but one scientist trying to explain it also said “There is no link between vaccines and humans not been able to jump off a cliff fly“
I feel celebrities shouldn’t be using their influence to sway people against vaccinating their kids. Jenny McCarthy is a fucking idiot. Will she be held accountable if someone who believed her bullshit let their kid catch something and die? Is that grounds for an involuntary manslaughter charge? Would she be accountable? I can not quote a pro-vaxxer like Marie but in my opinion everyone should be pro-vax. Why as a parent would you be against something that could save your child’s life?
Don’t get me wrong I’m the bad guy who takes William for all his injections and has to watch him become distressed and fight sand cry. We then have the delightful couple of days which he is out of sorts (aka possessed by the devil 👿) but… a couple of days is nothing in the grand scheme of things.
I would rather have a couple of bad days than no more days.
Postpartum depression and anxiety that 11-20% of women experience is not at all the same as the more commonly experienced ‘baby blues’ 80% of women experience for a few weeks.
Judy Dippel, Author of ‘Breaking the grip of Postpartum Depression: walk towards wellness with real facts, real stories and real god.’
I make it no secret that I am not a naturally maternal person and I work really hard to ensure I am the best Mom for William; the kind of Mom he needs me to be but I wont lie it often feels like i’m trying to roller-blade up a mountain ⛸.
It took me 18 months to admit I was struggling as people often referred to some of the feelings I had as ‘the baby blues’. It took me a long time having these thoughts and feelings building up for me to tell anyone and even then it was practically forced out of me in the most inappropriate way possible… A meeting at work 😳
Let me start from the beginning about my journey through trying to conceive, pregnancy, labour and beyond… We agreed it was time to start trying for a baby about a year before I fell pregnant. We quit smoking and tried to be healthier. I spoke to my doctor and agreed to come off my medication; I have a neurological disorder called Trigeminal Neuropathy and the medication I was on at the time was linked to birth defects so it wasn’t worth the risks. Every month my period came like clockwork ⏰ and every month we felt great loss as if we had lost something that wasn’t even there to start with. I’m not going to sugarcoat it but I think we both blamed ourselves. Why wasn’t my eggs working? am I infertile? I know Dave felt very similar about his swimmers too. This year of trying was constantly talking about how perfect our child would be and all the things we were looking forward to. Monday 17th June 2016; I felt pregnant but had done every month so wasn’t holding out too much hope. I didn’t even wait for Dave to get home before I peed on the stick but there it was… that extra line we had been praying for🤰🏻
Pregnancy wasn’t easy; I had several factors which placed me on the high risk list and an induction was discussed from almost day one… There flew my plans of a drug free natural birth🕊 As the weeks ticked by more and more things went wrong leading to more appointments, more medication and more worry. I left work officially on February 3rd 2017 to take my remaining leave before my maternity kicked in on the 6th March. We nested and cleaned and prepared the house for a whole tribe of babies even though we just had the one – Both of our dads are twins (not together obviously!) so at every scan I asked them to check there wasn’t another baby hiding 👶👶 1st of March I had my final consultant appointment. They needed to induce me asap to get William or Barry as we had nicknamed him (his uncle Jim still calls him Baz 3 years later) The consultants exact words were “when would you like to have your baby?” OMG! Obviously since they had driven it in to us how important it was for him to be out asap we said as soon as possible, We were booked in for Tuesday 7th March 2017. Our baby would be here in a week. 😊
Only that wasn’t quite the case… your consultant tells you what he thinks should happen and why but he doesn’t tell you if it is possible or what kind of state the wards are in. Thanks very much Fatima Allam for building your birthing suite for future labours but for me at this point it was a massive fucking inconvenience! The day arrives and we were told to bring our hospital bag… Our appointment was 6pm and no one came to us until nearly 7:30pm. We didn’t need our hospital bag; they wanted to try something called a Foley Bulb induction. I wont go into the gory details but it didn’t work and we were sent home at 2am and told to come back… with our bag at 9:30am the following morning. They wanted to try the ‘Propess’ Pessary. 24 hours under close observation. Nothing happened and i’m sat on the Maple ward with other Mothers popping out their kids left right and center despite the fact I have been there longer! How fucking inconsiderate of them! Then came the tablet pessaries and the long wait for my waters to be broken. Not to mention the numerous stretch and sweeps (Dave kept calling these scratch and sniffs 🤮) It got to the point that I didn’t believe the labour ward actually existed until my 8th day of trying to be induced… My mother had visited on day 7 and like the tornado she can be (to which I am very grateful)told them exactly how badly this was as no one was telling us anything and we were both just a wreck. It was so important for them to get him here quickly but no one was rushing. I was scared something would happen to William or to me. I wrote a letter in case i wasn’t around. One to Dave and one to William; you know with the usual. Why I fell in love with Dave and what I needed from him in my absence. A bit dramatic I know but it was how I felt.
Then day 8 arrived and by 6:59pm so had William. Lots of pain, crying and a lot of help from the surgical team but he was here. By the time I was moved to a ward it was time for Dave to go home as they didn’t let dads stay back then… I was not ready for this. This tiny little bundle cried for what felt like all night and I was in a shared room. The anxiety of this crippled me. I was awake all night holding him telling him every family member I could remember and their personality traits.
The love I felt for William was instant from the moment we fell pregnant but my life was changing so much, I wasn’t me anymore or the person I thought I had been. Work had been my life since I was 17. I had worked full time and made my way up and honestly loved my job, I would stay late, arrive early and log in from home. All my friends were there or so I thought. I always remember a conversation with my sister about how people had vanished from her life when she had my niece. I wouldn’t happen to me (insert eye roll here 🙄) But she was right… I hate it when that happens. People I spent every day with for years and nights out, boozy lunches were suddenly too busy to text. I’m not going to lie it fucking hurt and I was lonely. There was something about Williams development that just didn’t sit right. It was OK for me to think it but if anyone mentioned anything I would become defensive and justify his delays. Thinking it was one thing but admitting it is something very different. I hated being on maternity leave, I was itching to get back to work and some normality. Some adult conversation. Then in the November I get the call… my office is closing. My job is at risk. AGAIN! It didn’t just effect me but my mum also and so many others. I didn’t want redundancy. I had just had a baby. I needed flexible hours and a steady reliable income. We were saved! the company I work for now was bringing us in house. I felt so relieved and happy but there was just something that made me uneasy. A deep seeded worry that I couldn’t quite shake off. I returned to work in January 2019 and felt so out of my depth doing just 3 days but it wasn’t possible to do any more because we had no childcare or the funds to send him to nursery at that point. I couldn’t remember anything and there was no refresher training or brief about what had happened in the last year. Nothing. Everyone was trying to prepare for the move and I felt lost. What was once my world was now somewhere I went where hardly anyone knew me so I had no one to talk to. No DSE equipment for my bad back as someone had taken it whilst I was on maternity and lets face it, the company was closing us down. It wasn’t going to buy me equipment for the last 2 months.
My last day at my office was emotional; it felt like the end of a massive part of my life. My mom worked in the same building so on bad days I could go and vent or cry to her but not anymore. Hell i would even miss the mold on the canteen wall, the windows that wouldn’t open and the suspicious stains on the carpet. The new office was beautiful, so modern and clean. It was only 4 years old and made me feel proud to work in a building like that but it wasn’t home; Its crazy because there were people there in the same situation as me and I just plastered on a smile… ‘this is great’ ‘yes William is beautiful’ ‘no don’t worry i’m fine’
Fast forward a year ⏩⏩⏩ A year of denial about how I was feeling, Fake it till you make it… I was under performing in my job, I couldn’t focus on almost anything so I wasn’t functioning at anything particularly well and have so many dark thoughts running around my head… Would William be better off without me? Am I the one that has caused whatever the problem is with him? how can I do my job in 3 days? Why don’t my team respect me? Why am I so lonely? Why doesn’t my child love me? why do my colleagues seem to single me out? What if our landlord follows through with his threat to sell the house? What will we do if we end up homeless? What if they take William away from me because it’s my fault? What if something bad happens to Dave? what about Big Nanna? would William be better without me? would he? Have you ever been taken into an office and told your shit at your job? actually no that’s not what was said but its what it felt like at the time. I was forced in a little cloakroom style office to face some things… some things I hadn’t spoken about before. And with each irrational sentence that I sobbed, I felt a tiny bit lighter. That night my boss called me at home to make sure I had told Dave how I felt and that I was going to the doctors… Yes and yes.✔✔
I didn’t know what to say to the doctor and spent a fair amount of time just sobbing and telling him I didn’t know what was wrong with me but he did… Postnatal depression and anxiety. Too far gone to see a councillor. That wasn’t what was said but he recommended drugs for a quicker effect; I knew I needed to say yes as I had to do something as soon as possible to prepare myself not only to be able to function in day to day life again but for the fight I would shortly have for William. I ended up on anti-anxiety medication and anti-depressants and it hasn’t been an easy road as they make you feel that you’re OK when your not so when I first broached the idea of coming off them I though I was ready but was given some poor advice by another doctor and took a deep crash back to despair.
That was over a year ago now and I’ve slowly gotten to a place where it is time to start coming off the tablets. I haven’t had to take any anti-anxiety tablet in a long time. Work is work; I am in a new job that I thoroughly enjoy and I am away from aspects that had helped me spiral but it isn’t my life. It is just a small part of it; Its my little 3 day break from my real life. I go to work on a Monday (my favourite day of the week) and my last shift is on the Wednesday and then I switch off and i’m done… well at least more than I ever was previously. We have moved house to one that isn’t falling down around us and it’s more of a home to us than the other one had been in 7 years and as you are aware we have accepted and admitted that William has additional needs and delays and things have been put into place for William to help his development and I am fighting tooth and nail to ensure he gets the support he needs going forwards. I am now a ‘Momma Bear’ and can be fiercely protective about William and his needs rather than sticking my head in the sand. I am nearly off the antidepressants all together… 1 half dose twice a week, then going down to once a week and then i’m done.
I’m not sure why I felt the need to get this down in writing. It’s not really part of our ‘Journey onto the spectrum’ but it was a big part of leading up to this point. Its a part of me.
Autism speaks! William doesn’t, but true love needs no words…
But our son isn’t disabled…Have you ever been asked to admit something you aren’t quite ready for?
Today our Health Visitor came to go through DLA with us, This is to help us financially support William as he gets older and ensure all his needs are adequately met. I was warned that the forms are not pleasant. Well they are in fact 61 pages of hell!!! 😢
Is my son classed as disabled? I’ve only just plucked up the courage to tell people he has special needs, I know this is just me focusing on the wording but it stings to think that people will class him that way.
Getting hold of the form was hard. We went to the Wilson centre who told us to go to Jobcentre. We went to the Jobcentre to be told we needed PIP forms and to call a certain number… we don’t need PIP forms as he is under 16 but no we apparently needed PIP forms. WE DIDN’T!
There is no hiding from anything with the DLA form. Right from the beginning where it asks you to tell them what is wrong with your child and when did you notice? He has a severe developmental delay and I picked up on it from when he under a year old… It doesn’t give you the option to tell them you have your head in the sand for a year. That you were scared to admit it out loud.
There is then a full section about how he walks and gets around, which we aren’t allowed to fill in until he turns 3 so we will be doing it all again in March.
The rest of the section asks you to put time on things he can do or things you have to do for him and this is heartbreaking to fill in. I think the worst part was admitting how difficult bath times can be. He is fine sitting in water but as soon as we need to actually wash any part of him it becomes a traumatic experience. it can often be a 2 person job to bath him, one to hold him down so he doesnt hurt himself and one to wash him as adequately and quickly as possible.
We sent the form off and have a long wait ahead of us to find it if we are eligible, it can take 40 days for an initial answer and should his application be refused, we could send an appeal against their decision which will take more time.
Once again I can add this to the ever expanding list of things we are awaiting confirmation for…
Its been a tough few weeks recently, William seems to have regressed in his behaviours and seems to be lashing out at me more than usual. Not his dad just me… what did I do? He purposely scratched my face when he was frustrated which I’m not going to lie hurt like a motherfucker! the valuable lesson I have taken from this is to make sure I keep his nails short however cutting them is an awful and thankless task. Imagine if an octopus had claws on each tentacle and you had to avoid 7 of them whilst pinning the other one down, that’s what its like cutting his nails. Except that the octopus is screaming and biting to get away from you.
Today we had a full on meltdown because I wouldn’t let him eat ‘another’ packet of Parma Violets. He went to find more and threw them all over the floor before throwing himself down too and refusing to get up… I tried to lift him but he’s very smart and makes himself go all floppy! considering developmentally he is less than a year old he does show some terrible two traits which we were told is a good sign (insert eye roll here 🙄)
His sleep is very disturbed now. From the moment we brought him home from the hospital he slept for 7pm until gone 10am and we had to wake him up not the other way round. People called us lucky. I don’t feel lucky anymore. He goes to his room at about 7 to 7.30pm and precedes to destroy his bedroom for a good hour or more. Draws opened and emptied, everything he can physically reach ends up on the floor and in pieces. Juice everywhere and if we are very ‘lucky’ he will often smear the contents of his nappy around the room. Three times this week we’ve had to hose the boy down in the shower and disinfect his room and carpets ready for the next day… we go through a lot of sheets and a lot of wash powder. The washing machine is always on.
This is most likely our last post until after the Christmas holidays so I want to end it on a positive note!
William has an appointment with a paediatric neurodevelopmental specialist in January 2020… this confirmation is correct and came after Sarah⭐our amazing health visitor called our GP due to the last referral debacle.
We hope you all have a very merry christmas & a happy new year! 🎄🥂
So I’m going to apologise in advance because this is going to be a bit of a rant.
We are currently waiting on so many referrals and appointments that we are at a stage where we have nothing but seem to have it all… I know that’s contradictory. We have no appointments and no diagnosis but we had plans set in place to work our way forwards and it felt really good to be in that position.
I was really positive about it all but I guess I was just delusional. The glass isn’t half full like I initially thought it was. What makes it worse is whilst I felt this way I could throw my efforts into supporting Dave as he comes to terms with the fact William isn’t developing at a normal rate. He was very open and honest in his post (which knowing him was probably his first and last) but that doesn’t mean he isn’t still struggling to adjust just our situation.
WHY? WHY GOD WHY? Do we get post on a fucking Saturday?!
So in drops a letter. Private and Confidential, Mr William Graham Buckley… for a fleeting moment I was excited. What an idiot eh? I opened that envelope quicker than birthday cards with money in them. I didn’t understand. It was regarding a referral but I had no idea what it was for as it didn’t say and nothing about it rang a bell in regards to our last TAF meeting. I wasn’t expecting it and as it was a Saturday, there was no one I could call to find out. I did what any sane and rational parent does. I turned to google, I asked Alexa ‘referral to CHCP, Hull Children’s Community nursing team.’ Nothing. I asked on the SEN Parents group I recently joined on Facebook. Only one person commented and it wasn’t with the answer. Spoke to my mum and sister, couldn’t help but seemed like a step in the right direction. The letter said to wait until today and if I hadn’t heard anything call them… Just to put it into numbers. The letter was dated 27th November, we received it 7th December and today is the 11th December. So I was a good girl and waited those 4 days which seemed like a lifetime.
I made the ridiculous decision to call whilst at work. I always do this and I should have known better.
Smear test results – bad news – called at work
Biopsy results – bad news – called at work
Job interview – bad news – called at work
Glucose tolerance test – bad news – called at work
I should just stop taking my mobile to work!
Call One. I called the number on the letter and a lovely lady called Jess answered. what was the referral regarding? I don’t know maybe his suspected autism. What does the letter say? To call you if I hadn’t heard anything. I’m sorry Mrs Buckley he isn’t on our system but the department you need used to be based here and I think that’s why you have our number. She gave me the number for the paediatric team who I should be dealing with. Just a simple mistake.
Call Two. I called the new number, it took ages for anyone to answer. My anxiety levels rising rapidly. I just wanted to know what referral I was waiting for. What next step we have for William. A lady answers that didn’t give me her name and I’m almost certain is in the wrong job! The attitude on it was appalling. Why are you calling. Referral. Was given your number by blah blah blah, what’s it regarding. Honestly felt like I was in groundhog day ⏲. She had no idea what the hell I was talking about. He’s not on our system. The letter means the doctors are putting a referral through but it says they’ve sent it? No its sayinging they are doing it… I was the looking at it but ok then. Call your GP.
Call Three. Call taker at City Health Practise answers, no proper access to their systems but pleasant enough. Very understanding of how upset I was and apologetic. Doesn’t know what I’m talking about but will send a message to the receptionist and put a red flag on it for a call back. GREAT! More waiting…
Call Four. This one wasn’t even to me. One of the 2 places I had called first had called Dave, not sure which one. The referral was wrong. Sent to the wrong place! I’m not sure why I was so shook by it but I’m not ashamed to say that I actually started crying whilst in view of other people.
Dave was due at or GP in the afternoon for William’s flu vaccination so he was going to speak to them face to face and find out what was going on.
I went back into work and took shelter in the toilets and sobbed. It was loud, messy and snotty but I couldn’t stop. It just gushed out of me for a good 20 minutes and I let it because this was another setback and the third time we have tried to get somewhere in regards to referrals. AND its not the first that has been done wrong,
1. Eye test ➡ Told to go to opticians ➡ then to gp ➡ then to eye clinic but it was actually sent to ➡ The Children’s Urology Surgery Team in error ➡ had to go back to the GP and start again.
2. Paediatrician says they are referring William to ➡ ASD Panel, check with GP and they’ve received it and it’s all in hand. Health visitor checks with GP and no referral done by Paediatrician as they wanted GP to do it who isn’t able. GP didn’t even notify us.
3. This one
And to top it all off William’s flu vaccination was for last Monday at our GP surgery but they had booked us in at their sister site and not told us!!!
Dave spoke with the GP receptionist who assured him it was booked with the right people. He told them that it wasn’t and we had spoken to them but no it was right apparently… he had to demand they call to confirm which she didn’t want to do because the referral was right. BUT it wasn’t! After after much frustration he convinced her to call and guess what it was done to the wrong place but apparently that’s ok as its an easy mistake to make as they are in the same building etc etc!
Waiting for new referral now… To Sunshine House. Which FYI isn’t in the same place as the place we had received the letter for.
I feel my confidence in this system is slowly weakening. No wonder referrals for anything take so long. The wait for the ASD panel is between 2-3 years once confirmed and we aren’t even on that list yet. All these mistakes are setting us further and further back! William will already be at school by the time he gets a diagnosis… Will he get the support that he needs without it? Can I trust what is been told to me?