I Have seen this poem shared on Facebook several times throughout the last year but it didn’t resonate as much as it does today. You may remember the ‘Welcome to Holland’ poem I shared which in the beginning really touched me. Check that out here.
Unfortunately I haven’t been able to trace its origin but whomever wrote it, Thank you! I needed to read something like this right now and am so grateful for the Mom who shared it again 😘
I see you taking your kid to therapy while your friends take their kids to football or ballet.
I see you sneak out of the conversation when all your friends boast about achievements and exam notes.
I see you juggle work, events and meetings.
I see you sitting on the computer for hours investigating what your child needs.
I see you make a face when people complain about what looks like nonsense.
I see you disappear little by little but you keep going beyond for your family.
I see you pull strength from weakness with a force you didn’t even dream you had.
I see you showing respect for teachers, therapists and medical professionals who help your child and help you.
Watching you wake up early in the morning to do it all again after another chaotic night.
I see you when you’re on the edge of the precipice struggling to live.
I know you feel invisible, like no one notices. But I want you to know that I see you.
I see you push forward always. I see you choose to do everything you can to give your child the best care at home, school, therapy and the doctors. What you do matters. It’s worth the struggle.
On those days when you wonder if you can make it one more minute, I want you to know I see you.
I want you to know that you are beautiful. I want you to know it’s worth it. I want you to know that you are not alone. I want you to know that love is the most important thing, and that you are the best at it.
And in those days when you see an improvement, those moments when hard work has its reward, and you can taste success, I’ll see you then too. And I’m proud of you.
I want to talk about shame and I don’t mean the shame I have spoken about previously in which we blamed ourselves or where we weren’t willing to admit anything was wrong. The kind of shame I want to talk about today is the type others try to inflict upon you for the decisions you make.
And in what I can only describe as in true Cersei Lannister style I am not sorry!
When you open yourself up like we have you kind of expect everyone to have an opinion and believe me the internet isn’t full of sunshine and roses. Its a place were someone can remain annonymous, write hurtful things and suffer no reprecussions.
Our first instance was within three months of setting up the blog, we had no social pages other than our personal ones in which we shared the blog to our friends and family, we were never the type of people to add strangers on our accounts. Within those months things went really well and we gained a few followers, a few subscribes and it felt like we made difference by sharing our story. It was maybe December/January time when I recieved a message. ‘nobody cares’ ‘Maybe you arent trying hard enough to teach him’ ‘you feel guilty coz it id your fault’ (actually spelt coz, are we 12 and limited to characters again?)
By this time we had grown stronger in our acceptance and I deleted it and haven’t given it a seconds thought until now but could you imagine if that was to someone more fragile than us? Someone looking for reassurance or hell even guidance!
Fast forward to May and the wonderful Beth (Check her out here) designed a logo for our blog and our newly established social media pages. A lady commented to tell me about my use of the puzzle piece and how it is a hate symbol for autistic people. I appreciated being educated but I also felt like I was being told off. Like I was doing wrong so far into our journey and I should know better. The puzzle piece implies that they don’t fit in, that there is something missing or that they are a puzzle to be solved. Due to the juvenile type of picture commonly used it can also lead people to believe it is something that only effects children. Like its a bad haircut they grow out of.
I absolutely love the puzzle piece symbols which is why it was incorporated into our logo, I see it as a beacon of hope for William. He is a piece of this world that fits perfectly but we just need to find the right place for him. Its not about changing him but how the world sees people like him. To try and make it a better place not only for our autistic children to grow up into but for all children and that message I can imagine is very important to a lot of people.
The infinity symbol is supposed to represent math and a love of numbers, something shared by many people on the autism spectrum (I do think this statement is a massive sweeping generalisation) but not all, so far William has no association with math of any kind so to me this one isn’t as personal to us as the puzzle piece. It is also used signify inclusiveness and the integration of people with autism into general society, since there is no beginning or end to the sign. I just don’t feel anything towards it like I do the puzzle piece. I look at it and think of tattoos loads of people in their 20s and 30s now regret (mines a tramp stamp 🤣)but I don’t look at it and feel hope, I feel nothing.
And now I bring us to present day….
As a family we have always been open and honest which is why it hit us hard when we struggled to open up about William’s difficulties because it was so unlike us. There are pictures and stories about me online that I have no shame in sharing and same goes for David. I have always been willing to share my dark days, my good days and days in which I’m just an absolute airhead and say or do something that is just inconceivable for someone of my age and education.
for example here is me in a pair of pyjamas (which at the time I felt were wholly acceptable as an adult) trying to frighten Dave by being a bear 🐻 GRRR
I love and hate twitter with equal measure. I shared an anecdote about how our little boy laughs uncontrollably if you tell him to stop touching his diddle, this was accompanied with a beautiful little gif (check it out on our Facebook page here) Twitter always opens up the floor for trolls and/or unsolicited advice and 2 men decided to tell me that I should not post these kinds of things because I would damage him when he is older, because facial recognition is soo good now that he will be identified putting a risk to any future employment… Let me tell you something, there are pictures of my passed out drunk in a field at 14 years old and I still have a good job. There are pictures of Dave in drag (as a work event for one of his Saturday jobs?) and he too has a very good job. When William is able, I expect him to take over our pages and continue to share stories of his life just like we have our own for years with Piczo sites, Myspace, Beebo, Facebook, Twitter, Instagram and many others that have been and gone.
I want him to continue to tell the world and show them how he has grown and how he navigates life, the good and the bad. Funny anecdotes a plenty! If he decides he doesn’t want to or wants it deleted then I am happy with that too.
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.
I always thought I wanted two children but once we actually started trying to get pregnant I soon changed my mind. I have a sister (H) and although we argued; like sisters do but I couldn’t have imagined my childhood without her or even my life now. Dave however always wanted just one. He too has a sibling but not with a bond like H and I have and maybe that is why he only ever wanted one.
We agreed we would discuss it again when William turned one… Still only wanted one child. We will discuss it again when he goes to school and again when we turn 34, after all I wouldn’t want to fall into that geriatric mom category of 35!!! since when was 35 classed as geriatric?!
I always said that I couldn’t put myself through it again but I get this little pang when I see my friends with their ‘normal’ or neurotypical children. Surely I deserve that? Why can’t I have it? All those moments I feel like I’ve been deprived of… A baby who will call me Mummy and will be receptive to my cuddles. A baby who can be comforted by me. A baby who would love me back.
Facebook is the root of all evil… & envy, its banner should be green not blue! I see so many beautiful babies and children on my news feed. Children much younger than William easily communicating with their parents and making it look so easy. Children singing, counting and developing at the correct rates and it breaks my heart 💔 I am so happy for all of my friends who are parents and why shouldn’t they sing it from the rooftops when their child learns something new. It just gets to a point that I just can’t see it anymore. I have un-followed so many people because I am just brimming with jealousy and it hurts me to admit that because I would never wish any parent to go through what we are but I just want what they have. Why can’t I have that?
But then I look at William who has started eating bread, not toasted bread or chocolate bread but normal bread and I want to celebrate it. He ate a sandwich!!! not one but several! My little man who is repulsed by the touch of bread actually ate a sandwich himself 🤭 But then he also decided he didn’t want to wear any clothes at all and chose to ignore me for what feels like the 1095th day in row.
Before i continue i just want to say it again…. My baby ate a sandwich, not once but on three separate occasions last week!!! He touched bread and it didn’t end in him throwing it on the floor and recoiling in disgust. It was a beautiful sight as you can see.
This week I called my mom very teary because I had ‘that moment’ a moment most parents have every day. me and William had spent the day I the garden and needed a bath but bath times are traumatic at best so I decided to turn the shower head on and sit underneath it with him. He laid there so calm as the water rained down on us and looked me in the eyes the entire time. That moment is something I had been waiting for for 3 years. That moment he looked at me and everything was fine. That moment I knew he did love me but shows it in his own way.
If I don’t get another moment for the next three years I can hold on to those perfect 10 minutes in which he just looked at me and with his eyes told me I was doing OK as his mom.
I think about how William would react to a sibling and I always (well 90% of the time) think it would be really selfish of us to even consider it. William needs a lot of attention and he would not have that like he does now. I don’t think he could cope with the immediate and permanent changes to his routine. You couldn’t train a baby into doing things the way your older child needs/wants them to be done.
But then… I think maybe just maybe William may flourish with a sibling. Research shows for neurotypical people that having a sibling can have a positive impact on both mental and physical health. However separate studies based on siblings of autistic children clearly show that the neurotypical child often develop social and emotional difficulties. Would there ever be enough time to give a second child the attention the would need or deserve? I look (again with envy) at other parents who are in a similar situation to ours and wonder how they make it look so easy? so effortless? I often think of these parents as ‘the Naturals’ whose days are exhausting because they have spent them being the truly amazing parents that they are. I’m an ‘Impostor Parent’ and am exhausted from spending my days trying to be an adequate parent.
I think of the trying, the pregnancy, the complications, the labour and the mental health issues that came after and I just think ‘Fuck it! lets get another dog!’ but then I think of how often Rusty used to shit on the carpet and think better of it. I clean enough poo from the floor as it is. I think it’s best off just staying the five of us… well four ifI get my way about that arsehole cat. (totally kidding as i was heartbroken whilst he was missing 🐈but still an arsehole)
I feel like I need to put a little bit of context into the above photo; whilst visiting Williams Big Nanna (my Nanna) like we do every Sunday he had a little red spot on his hand and 2 on his face that seemed to have appeared out of nowhere. As the day went on a few more appeared but he was fine within himself. Dave took him to the pharmacy in the morning as he had a few on his feet too… ‘Hand, Foot and Mouth’ they said. They can’t be wrong can they? We kept him off nursery as we know how contagious it can be.
On the Wednesday whilst I was at work the rash had spread all over his little body and the boy was itching which doesn’t usually happen when children have Hand, Foot & Mouth. Dave called 111 for some advice and they sent paramedics to our house who decided to blue light him to Hull Royal Infirmary. Dave didn’t call to tell me…
I rang him during my lunch to find out how William was and he said he was waiting to get the boy checked over as his rash is was worse. ‘what times the appointment with the doctor?’ he wasn’t at the doctors, ‘are you at the walk in?’ No. He told me where he was and that everything was fine and was sat in childrens a&e waiting to be checked out, he didn’t mention the ambulance. ‘Do I need to leave work?’ No he was fine and just getting checked over and then they will be home.
I updated Debs and the Hobmans… Me, My Mum and Sister have a group chat. Debs told me to go and she would take over my work and My Mum and Sister both immediately called me. ‘Everything’s fine. I’m staying at work. Dave just wants him checked out’
3pm I call whilst on my last break… ‘everything is fine’ he says. ‘Do you want me to come after work and meet you both in a&e?‘ ‘well… err we have been moved to a ward. Just for observation though! he‘s fine’ Debs again pushes me to leave work… She knows me too well. She knows I don’t want to be there in case something is wrong… I don’t want to hear the bad news because if I don’t hear it then it isn’t true. I know it’s selfish of me but I could justify it because Dave said he’s fine even though I know he is just trying to protect me from spiraling.
William was in fact fine and they even made it back to our house before I did. Dave was armed with a letter of discharge stating it was Viral Urticaria (Hives) They had injected him with a strong antihistamine. This was especially nasty as they cant inject in one swift go but they have to do it over 60 seconds, so poor Dave had to restrain the boy whilst this happened.
RELIEF! all was good in the world. William was fine… we couldn’t pinpoint what had caused the reaction but he had recently finished a course of antibiotics (you know the kind; the tasty banana stuff🍌) for a chest infection, before that he had suffered with a Vomiting and Diarrhea bug. Maybe it was a reaction to the medicine or even just an after effect of been so poorly. We even thought it could have been a reaction to some cleaning products that was on Big Nans sofa as she had recently had it professionally cleaned. I messaged the family chat to update them. Great news! only Dave didn’t look like he had great news… and that’s when I saw it, I don’t know how I missed it. In bold lettering at the bottom of the discharge letter ‘Actions to be completed by GP: we would recommend that William be referred to the social communication difficulties team for investigations of possible Autistic Spectrum Disorder. We would be grateful if you could facilitate this’ The Paediatrician at the hospital had asked Dave about Williams behaviours and told him it was highly likely William had some form of Autism.
I cried, Dave cried and I’m pretty sure every member of our support network cried too.
When I told my Nanna she asked in hushed tones if I was telling people. ‘Of course we are. It’s nothing to be ashamed of’ she said she knows that but does she? Does anyone?
I asked my friend between sobs ‘How can I care for a child with special needs?’ ‘You already are and have done for the last two and a half years. This doesn’t change who William is or you and Dave as his parents’
William has been granted 2 year funding which covered an extra day at nursery during our ‘TAF’ meeting and the nursery had agreed to 1 : 1 support before receiving funding for it. The decision to grant this still had to be approved by a panel in order for the nursery to receive the funding and if this wasn’t granted the nursery wouldn’t be able to continue with it.
The phone call came on September 12th 2019… 9 days before my 30th Birthday and it was a gift that no others could beat.
His Level 1 funding meant that he would be getting 50% of his time with Val due to how his additional hours were worked out over the year instead of term time. I am sure Val is lovely (I hadn’t met her at this point as Dave does the drop off whilst i’m at work) but leaving his previous key worker Linda was a big adjustment for William as he had grown an attachment to her and he would continuously try to seek her out when he should have been with Val. What made it more difficult is that she spent the 1st day of the week with him. Due to his attachment to her it was decided that she would remain with him rather than moving to another room in the nursery to prevent him becoming upset when she wasn’t around
We had been asked by his nursery to have his eyesight checked due to the way in which he was making his way around the facility. This is the appointment we were referring to in our post. We had gone to the doctors to request this who told us to go to the optician… who told us they needed a referral from the doctor. We went back to our GP who said they would put an appointment across to Hull and East Yorkshire Eye Hospital. The letter came swiftly and I called my wonderful sister Helen who works in the hospital to ask about the consultant named on his letter… she had never heard of him. I looked on the online directory and nothing specific was given about said consultant. The Doctors couldn’t have got the referral wrong! could they? surely not!
My sister continuously asked about this referral to the point I was a bit shitty with her. Maybe she just hadn’t encountered this consultant before or he was new. She couldn’t know everyone at the hospital. She pushed and pushed so Dave called into our GP to confirm it was the correct type of referral. They confirmed it was. My sister was just trying to interfere… obviously that wasn’t what she was doing but its how I felt a the time.
Helen called AGAIN and said she had asked other people if they had met this consultant and they hadn’t… I called the national ‘e-Referral Service appointment line’ just to stop her pestering us and to prove her wrong. She was right! she usually is to be fair but at this point in time I was telling myself William was my child and I knew best and I didn’t need other people sticking their noses in. The GP had in fact referred us to a Mr Fleet a consultant in Children and adolescent services – Urology department. He specialized in Paediatric surgery. The referral was rectified by the appointment line who were very apologetic on behalf of our GP.
The appointment came and the staff at the Eye Hospital were fantastic… because let’s face how difficult it must be to conduct an eye test if the subject can speak, wont look at you or communicate with hand gestures. They ruled out any issues with his eyes but wanted a follow up appointment in a few months time to be on the safe side. We are currently waiting for this.
William was sent home from nursery with a letter inviting us to a ‘TAF Meeting’ on 5th August 2019. It was just slipped into his bag like it was nothing. What is a TAF meeting? We had no idea and no one explained it to us so obviously I turned to the internet.
The internet is a wonderful thing but also an evil thing and you shouldn’t believe everything you read from unknown sources but that didn’t stop me… phrases swam around on my laptop like. ‘child at risk’ and ‘social services involvement’ I should have just called the nursery or my health visitor and asked what the meeting would entail but my fear and anxiety stopped me. I would rather be ill informed with my head in the sand.
We are very lucky to have a great support network and my boss Debs who also happens to be my best friend (no special treatment. I promise) forced me to take the day off work to attend as initially I was going to let Dave handle it on his own which I know is really selfish of me but I wasn’t in the right mental place to hear bad news. The Hobmans, Debs and a small group of other people had slowly been dripping the idea to us that William needed extra support so that when we were finally ready to admit it to ourselves they were on hand with their knowledge which they had accumulated whilst we were busy brushing them off. We are incredibly grateful for this even though we may not have said it at the time. Without the likes of my amazing mum and friends we may not be where we are now. So please if you are starting your own journeys look at your family and friends and truly appreciate them for what they are. A support network who will sooth you when you cry, listen when you are angry and give you a life vest when you feel like you are drowning.
We went into the meeting completely unprepared and scared about what would be said and how these people would judge us. I took a notebook and made 3 notes that to this day I have no idea what I had written. Just indecipherable words.
It was after this day I made our first public post on facebook…
My facebook is private and I only accept people I know well so I was shocked when I started receiving messages from people on my friends list about how they are going through the same, have concerns about their children or have been down this route and had a diagnosis etc.
I had felt so alone in what I was going through and had no idea there were so many others out there. I decided I would keep posting updates so people could follow our journey. It then stopped been because people were mean behind our back and became about reaching out to people like ourselves.