By Emily Perl Kingsley, 1987. All rights reserved.
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very very significant loss. But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
Marie is the writer in our family not me. You know for all
the important stuff like birthday cards and notes threatening to kill me when I
haven’t done the pots so this is a whole new thing for me and I’m not sure if
what I’m going say will be more than ranting so please bear with me.
I know it’s a cliché but because of the stigma it’s harder
for me as a man to admit when things upset me especially as I am always trying
to be the strong and rational one stopping others around me falling apart. I suppose
this is why it was easier for me to stay in denial as long as I did.
Even though I’m coming to terms with the fact William has
additional needs? Special needs? A development delay? What am I even supposed
to call it since we don’t even have a diagnosis? They all sound like such derogative
terms like I am insulting him. What I am finding really hard is coming to terms
with what this means for him in the future. I always wanted things for him
which I didn’t have. We set up a savings account for him before he was a year
old. We wanted him to have the money for university so he didn’t become too
bogged down with student loans or even use it as the deposit for his first little
house with a girlfriend. Will that be possible now? Could he live on his own? Or
will he always live with us? I know it may seem like I am thinking of worst outcome
but he hasn’t progressed past 11 months old!!!
We specifically moved house back in summer so he was in a
better catchment area and had better opportunities for education and now it looks
more unlikely as the days pass that he will be going to a mainstream school let
alone the one we chose. Marie even asked if there was anything in place to
introduce special needs facilities and the answer was no… does that mean that
wherever he goes he will need to get the ‘special’ bus? You know the one. The one
kids made fun of without understanding its purpose.
I know it’s selfish of me but I can’t help but be sad and
angry about all the things we won’t or can’t do together because of this! It feels
like I’m grieving for the future I had planned for him and I know it’s ridiculous
because he is here and he is so loved but it’s not what I dreamt of. I dreamt
of seeing him at rugby training after school and forcing Marie to watch the
matches on a weekend come rain or shine. Dreams change and I would like to
think we can find some common ground we are both cable of taking part in but
that doesn’t stop this loss.
Today when I took him to nursery there was a Mum dropping
her daughter off at the same time and in that instant I hated her… she didn’t do
anything wrong but she stopped her kid who’s in Williams class and asked her
for a kiss goodbye and I hated her for it because we’ve never done that and don’t
know if we ever will. I hated her because she will take that for granted and wouldn’t.
I’m scared for him… If he never speaks how can we expect him
to learn sign language when he doesn’t look at you, wave or clap… how do you
get round that? How can we use PECS when he won’t look at anything you put in
front of him and will purposely try to avoid them as if they will burn his eyes?
Nursery told us to try and train him! Like a dog basically by rewarding eye
contact with a treat. A bit like how we taught Rust to sit. So we have to put
his treats in a box he can see through and when he brings you it only give him
one if he looks you in the eye but he doesn’t. He will cry and then scream. Occasionally
he will slap you and collapse in a mess on the floor only to go to next person
and try again. Could you put your child through that when it doesn’t stop, he
just gets more and more upset and it so fucking hard.
I worry that he will struggle more as he gets older. Will he
be bullied because he’s different? Or because he doesn’t speak? Will he have
friends or be sat on the playground alone? Will they laugh at him because he can’t
touch bread without having a meltdown? How can we be thinking of sending him to
school already when we know how hard it may be?
I still hope that this is just a blip and within a year he will be going into nursery with his friends shouting ‘Bye Daddy’. That hope just gets a little smaller after every passing month but it’s still there and I will hold on to it for as long as I can.
I have always worshipped my Dad. I always wanted to gain his approval. It’s not that I didn’t already have it but I didn’t want to risk losing it. I waited until I was married before we started trying for a baby, You know the ‘right’ way.
I spent summers walking around garden centers with him as he picked out new plants for his pond, I spent nights listening to Jim Reeves and Johnny Cash and he used to let me stay up late unless I yawned… as soon as I yawned it was time for bed. This was a great trick I planned to use in the future.
My dad was the only boy out of three. He had an older sister and a twin sister. His eldest sister had a daughter, His twin had 2 daughters and he had Me and Helen. Helen then had my beautiful Niece. When we finally fell pregnant I was desperate for a boy. I had always wanted a little boy, I’m not sure why but deep down I think it was secretly for my dad. I tried to convince myself we were having a girl so that when our 21 week scan came round I wouldn’t be disappointed.
Now I don’t know if you have ever seen a baby scan at 21 weeks but they dont look anything like a baby. In fact William looked like an alien 👽 the print out we received was a close up of his terrifying little UFO face. As you can see he was cute and peanut shaped in his 12 week scan above and developed into E.T over the following 9 weeks. We didn’t even need to ask what sex he was because the little exhibitionist that he was had his legs open the entire time, every time the sonographer tried to obtain measurements of different areas he moved to once again show us his little todger. 😲
Holy shit we were having a boy! We were having a William Graham (my dad’s middle name and Dave’s dads first) and not an Alyson Rose. We immediately went shopping and purchased every blue baby grow we could find at Next, Matalan and Asda 💸
I called the Hobmans and dad had said he knew one of us would break the curse eventually 🙌🏻 I was so glad it was me.
I had visions of my dad taking him fishing, Dave taking him to watch Hull FC and eventually enrolling him a rugby club. 🏉
Throughout our journey so far I had avoided discussing it with my dad, I don’t know why. Would he blame me? would he treat William differently? would he even understand? My mum had always been the one to give him any updates before I shared anything publicly as I wasn’t ready for that conversation until it appeared in black & white and she asked me if I was telling him myself… and I did. I made that phone call and held it together long enough to tell him what we knew which even though it wasn’t alot, was still enough. I don’t remember the exact conversation but my dad, who has never been a man of many words simply said something along the lines of ‘Well it doesn’t matter does it. He’s happy and that’s all that matters and has two parents who are doing a great job’ conversation over. There was an immediate relief that rushed through me and I sat a cried. Not silent tears but loud, snotty, messy ones. I couldn’t even explain why I was crying and Dave just held me.
My dad has always had William few hours each week until I get home from work. They both seem to really enjoy this time together as they are always snuggled up when I get home as you can see below.
Tonight I took a leap and I went to see my dad and for the first time we spoke face to face through Williams next steps. He was so positive and encouraging. I’m not going lie, It took all my strength to hold it together and not cry.
I feel guilty about thinking he would be any different. He had never done anything that indicated he would be but in my head we were letting him down. Even though I am now 30 I still need him to be proud and tell me everything is ok.
He treats William the same way he always has because his difficulties don’t change anything. He is still our son and his grandson and if my mum voiced her suspicions to him like she did me then he probably knew William was struggling long before I could admit it to myself.
They can still go fishing 🎣 or do anything else a grandad does with their grandson; They can kick a football in the park, walk Rusty together (as long as William picks up the poop 💩) or as time goes on, go to the pub where my dad can hustle him at pool like he did with Dave and my Father in Law 🎱
I think a lot of my fears are down to my own insecurities which I then project onto others in an attempt to appear stronger than I actually am but I think as time ticks by I am getting better at being more open not only about Williams needs but also my own emotional ones.
Tuesday 19th November 2019… We were going into today’s meeting much more prepared than its predecessor. We went armed with my trusty notebook full of comments, questions and observations.
‘TAF’ meetings – Team around family meetings. They basically do as they say on the tin. Its a meeting in which the agencies involved in Williams development get together with his family to make sure we are all on the same page in order to help William as he gets older and to make sure we are all doing what is best for him.
Today’s guest appearances came from a member of the Early Years Development Team from Hull City Council. I never remember her name but she is lovely so I will make sure I find out. Sarah, our Health Visitor and Val, his key worker in nursery who specializes in SEN (special educational needs)
As always there is always good and bad news whenever we have an update…
Unfortunately all parties agreed that there had been little to no progress in regards to Williams development since he was initially granted level 2 funding. This was very disheartening even though we agreed with it 💔 He has now been awarded Level 1 funding which means Val will be with him all the time at nursery. This unfortunately means he won’t be spending any time with Linda which may cause a slight regression in his behaviour due to their bond but will be for the best as she isn’t SEN trained and can’t do some of things with him that Val can.
We touched on the subject of schooling 🏫 and whether he would attended a special school, a standard mainstream school or a mainstream school with special needs provisions. Although it is too early to make a decision we are putting steps in place to ensure that no matter where he enrolls he has all the support he needs. This includes setting up a PCP (person centered planning meeting) which is to help plan certain aspects of Williams future. Starting the EHCP (educational health and care plan) process. This is needed to be put in place to ensure William would be granted a place at whichever school would be best for him regardless of catchment areas. A referral is also being sent to the Outreach Team that deal with Ganton & Tweendykes special schools who can help support him both at nursery and at home🏡
And now for the bad…😢
Williams referral to the Autism Panel (this is a bit like the X-Factor panel but not as shit) mentioned in my previous post was stuck in limbo. Based on the Paediatricians letter he expected our GP to do the referral. We had called them the day after the letter was sent and they had confirmed it was received and they would process it. BUT… It turns out that GP’s can no longer submit referrals of this kind and it can only be done by…
A Paediatrician (WTF! why didn’t he do it?)
A speech and language therapist (We are still waiting⌚ apparently we are near the top of the list, have been allocated a therapist but it won’t be until next year)
Sarah said as this has recently just changed she will speak with our GP, confirm what is happening and if nothing was in place she would call the nursery manager and ask her to put the referral though. She promised to let us know later that day.
We knew from an early age that William was struggling developmentally but today it was confirmed exactly how much of a delay there was. His current development is within the age group of 0 – 11 months. This hit us like a bus 🚌 as neither of us imagined he was that far behind. This doesn’t mean he can’t catch up to his real age but the wider the gap the more difficult things will become for him but we can only take each day as it comes.
Sarah called later that day as promised showing us yet again what a superstar she is ✨ No referral was in place! She advised she wasn’t going to ask the nursery to do it… My heart sank until she explained why. She has asked our GP to refer us back to a paediatrician who can assess William to rule out any other issues and make the referral to the ASD (autism spectrum disorder) Panel. This would prevent any further delays down the line should he undertake a Triage (this is an assessment to see if he actually needs to go to the ASD Panel at all) and they ask for this then delays his diagnosis even further (No fucking wonder there is a 2 – 3 year wait!😡) She will chase this up for us in a few weeks if we haven’t heard anything. I honestly couldn’t praise Sarah enough for all the support she gives us.
When Dave and I left the meeting we agreed not to talk about it until we got home to let it all sink in. We don’t drive so it was a very silent and uncomfortable bus ride. Our discussion was so positive about what we can do for him in the future, how we will handle any obstacles and how much we love him.
But Dave wasn’t feeling positive and he was trying to be strong for me. He was devastated and broke down. ‘I just want him to be happy’ he cried. And then I cried. Not because I thought William was going to be unhappy but because Dave was crying and he had all the same fears as me. ‘He is happy and we will keep him that way. Today’s meeting doesn’t change that‘ Dave has seen the same videos you guys probably have of Autistic children have meltdown in the middle of things that most people take for granted like getting a haircut (we have cut Williams hair may times including once when I was using the clippers and the guard fell off… we had a bald child for a while), going food shopping or a change to their routine etc.
We will cope with these things if they arise. We may not cope well but together we will do it.
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.
‘Why haven’t they done something sooner? It’s obvious there is something wrong with him. He looks real dopey in all his pictures’
It was the above comment made by a ‘friend’ and this spurred me on to publicly post Williams journey on my private facebook page. The main reason was to stop people talking about us without knowing the facts but now I want people to know every aspect of our journey so that should they be going through something similar they know where to start on their own journey or even feel less alone.
For the first two years of Williams life it was easy to ‘sugarcoat’ the things he couldn’t do which was a defence mechanism against those awkward questions.
“Is he not walking yet?” “Why doesn’t he acknowledge me?”
We became so used to answering these questions that our responses became very rehearsed.
“Well let’s face it, he has a moon head like his mummy and because of that he struggled to sit up until he was 10 months old. He just needs to build his neck muscles because it’s a big weight to carry” we would laugh it off because when he born the doctor measured his head 3 times to check he had it right. His measurements were all in the 25th percentile except his head which was in the 91st and in all fairness the Hobman side of the family do all have massive noggins 😜 “He is just ignorant bless him. There’s nothing wrong with his hearing he can hear a packet of crisps being opened from three rooms away”
William was 26 months old when we decided to send him to nursery for the first time, one full day a week away from us to help with his socialisation and communication skills. We should have done it sooner and believe me people mentioned it. BUT have you ever tried to find an extra £190 a month?! We work almost 65 hours a week between us but with bills to pay its a lot of money but we managed to find it.
Williams 2 and a half year check up wasn’t with his usual Health Visitor; Sarah, it was with a stranger in a health centre we had never been to before which immediately put us on edge. We had received the usual questionnaire about what he can and can’t do and when we sat down as a family to complete it we had to remind ourselves not to exaggerate and be brutally honest about which areas he was struggling in. Dave found this exceptionally hard as he was more in denial than myself and at that point wouldn’t engage in the ‘What if?’ conversations.
Looking back the lady who carried out this development check was lovely but on that day she was the devil 👿 She stopped what she called ‘the assessment’ and in my head she said “You’re sons a fucking retard so there no point in this” however what she said actually said is something along the lines of “I think we should stop as I don’t to want to upset William but…” We sat on the wall outside the health centre in full view of the main road and cried; we cried for the dream of a normal child, we cried because why would this be happening to us? We had tried so hard for a baby and done everything right! How would we tell people? Is it our fault?
The health visitor came to our house within a week after our meeting with the devil and continued the assessment. I always feel much more at ease with Sarah than other professionals. She has that reassuring way about her that people’s mums and grandparents have that just comes naturally to some people. She spoke through Williams development and what he was and wasn’t excelling in and said ‘the devil’ had told her she had referred him to a speech & language therapist and Sarah agreed it was the best step and she too would refer him on top of speaking to his nursery about his needs. At this point she had no concerns that he could be on the spectrum.
It was the Easter whilst waiting for the next step that the above comment was made and it really hurt as it was a big step for us admitting something wasn’t right for a close ‘friend’ to then say something like that. Especially as said ‘friend’ had known me almost all my life. She has never spoken to me about what she said or about anything else to be honest since I found out. She has defended herself to others. This person had attended or been invited to such big events in my life that I missed who I thought she was for a long time but she was obviously never that person. As time has passed I often think I should thank her for been the kind of person that would say things like that about a child because it made us become more open about what we are going through not only to ourselves but to a much wider audience.