Posted in Brief updates

In a GAP

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.

The look of pure joy that he is naked and put of his awful onesie

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…

  1. Our GP sent a referral to the community nursing team
  2. The community nursing team rejected this as he is under 4
    • NO ONE NOTIFIED US UNTIL WE CHASED THE REFERRAL
  3. Our GP sent a referral to paediatric medicine
  4. 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
  5. I chase the paediatric medicine team who told us what they had done
  6. I call the GP and they tell me to call the community nursing team
  7. I call them and they only know about the original referral and won’t accept another one as he is still under 4
  8. 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
  9. 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
  10. 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
  11. She is going to call our health visitor and William’s own paediatrician for help and call me back
  12. 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!
  13. 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?

Posted in Appointments

The Day

Today was THE DAY!!! well almost…
William’s referral to the ASD panel will be put through by his Speech and Language therapist. We need to sign our consent on the 10th February when she goes to observe him at nursery and then it’s done. Then we wait for the confirmation letter and the countdown begins ⏱

Today, like most important days didn’t start well. Anxiety at peak and the woman from speech and language hasn’t turned up and it was almost 30 minutes passed our home visit time.

Just like my last Tesco order she had gone to our old address 🤣 She called and was super apologetic but her paper file hadn’t been updated but she was on her way.
So Sally (writing her name so I remember it in the future) arrived and jumped in straight away, As soon as she sat down William went to her and grabbed her hands to play ’round and round the garden’ which was a positive sign as he doesn’t often take to new people in that way especially when he’s been poorly. Sunday morning wake up call was to a gunky case of conjunctivitis and a bust lip? Not sure how that happened but he didn’t wake us up when it did.

She asked a lot of the same questions as the Neurodevelopmental Paediatrician did but had a warm way about her that made them less judgemental and abrupt. In between questions she was playing with William as he wouldn’t leave her alone.

This wasn’t the type of appointment in which someone walks in and goes ‘right then Mr & Mrs Buckley, William will definitely start talking soon!’
This was the beginning of a very long process. There is no magic wand to wave to poof things into happening or to speed up William’s development and we’re ok with that as long as things are moving in the right direction and that he is happy.

Sally is sending us on a course ran by 2 speech and language specialists who will help up know how to appropriately encourage William to make more eye contact. She mentioned that usually his SEN worker would go along but believes Val has already had it based on the work she has done with William so far however will send her too if needed. There is a few month waiting list for this so it’s another letter we will be waiting to hit the doormat but we are good with that as we know its coming.
she will the check back in with us to see what the next steps are in developing his communication whether it’s BSL, Makaton on the Pecs system. The goal isn’t necessary to get William to start speaking but to enable him to communicate with us in a way he is comfortable with with which make things easier for us all in the long run.

Don’t get me wrong I would kill to have William call me ‘Mummy’ or tell me he loves me but he already does that in his own ways. Like on the rare occasion when he’s tired and comes to cuddle me and moves my hand so I know he wants me to stroke his hair.

2020-02-10T13:15:00

  days

  hours  minutes  seconds

until

It’s Officially The Day

William has several appointments and assessments in the pipeline including an evaluation by IPass who are going to assess him movement to rule out any physical disabilities.
The next TAF meeting is in February so hopefully this will get the ball rolling further in regards to his education and an EHCP plan.

Big progress with Williams fine motor skills and his hand eye coordination and it’s all happened in such a short time.
He has now done the following for the first times…

* slotted a disc into a small hole
* used a fork to scoop, stab and feed
* built a lego tower with me
* scribbled independently on his whiteboard ➡ Future Picasso according to his Nanna

Posted in Appointments

If you’re not on the list, you’re not coming in!

Today was THE day! Everyone said it was… everyone said it was THE appointment to get him on the ASD Panel waiting list. We were referred to the neurodevelopmental paediatrician because she would be the one to put him on that list…
I should have known better, why would this be THE day. A miserable cold day in January when none of the previous ‘THE day’ appointments had been the actual day.

Yesterday we had a tiny step for babykind but a massive leap for William👨🏻‍🚀 He has been using a fork! 🍴 He had actually been scooping and stabbing his own food and successfully getting it in his mouth. This amazing coordination is a huge achievement for him. He hasn’t reenacted this at home yet but he has a small toy that involves putting a disc into a slot and he has also master that. His current favourite game is putting the disc in and passing me it to fire out for him to do it all again… so basically I spend a good portion of my evenings playing fetch with my toddler 😏
His other favourite pastime is holding me hostage in his room and forcing me to play round and round the garden until I can escape but we are currently on game number 1,00000003 and he still laughs before I even touch his hand which means I will keep going.

His bedtime routine hasn’t improved although our morning one has. His Nanna bought him some adorable all in ones to sleep in which means we don’t have to fully disinfect his room every morning. Don’t get me wrong he still tries to take his pants off at every opportunity… he is just like his dad in that way 😜

He isn’t lashing out as much as he has done in the past but his routine is now settled again so i am hoping it stays that way if he encounters changes. He does need his nails cutting soon so if any of you see me with a bloody face then you can probably guess why.

Today didn’t start particularly well, both David and William had to get up much earlier than usual and neither of them handled it well. I basically hand to turn into Gny. Sgt. Hartman to get them sorted and out of the house! I’m not exactly pleasant when i’m stressed.

Traffic was horrendous and we stayed in the same spot on holderness road for 15 minutes and then to cap it off when we get on our second bus we ended up miles away because the shitting ‘movit’ app crashed. THEN google maps told us to go in the wrong direction! Needless to say both me and Dave were very stressed and took it out on each other. He shouted at me, I shouted at him and then we didn’t speak…

Arriving late is never the impression I want to give so I was very on edge when we finally arrived. The paediatrician whose name I can’t remember didn’t come across well, I don’t know if its because I was on edge but she was very condescending and told Dave off for fidgeting because it was distracting her.

She tipped out some toys for William to play with and grilled us about family history and when William reached his milestones. I couldn’t remember when he first smiled and I felt like a terrible mum. I remembered he was 10 months when he first sat up and 21 months when he was walking independently but I could not for the life of me remember when he first smiled. I remember the feeling and the fact I cried when he first looked at me and smiled but not when.
She asked about our family histories and if any one had any history of ASD and there is one person in each side of the family. Both boys and both in Williams generation. Both on our Fathers sides.

How is his medical history, how many times has he been in hospital? How many times has he had antibiotics? What caused his massive allergic reaction? what are his bowel movements like? apparently sluggish bowels are often found in children with autism.
Does he have any birthmarks? What was he like as a baby? Was I on medication when pregnant? Other than GD did I have any issues? Did I breastfeed? How was the labour? Well it was fucking hard! it was definitely no walk in the park.

Then she asked about his sleep patterns and we explained how well he slept really well until he turned two. How is his diet? well… when we can get him to eat he will eat anything and everything, even stuff he wont touch with his hands will go into his mouth. His poops often come out gift wrapped due to the amount of paper he eats. Its not worth risking a finger to get it out of his mouth. 👆🏻

Where do I work? What do I do? Where does Dave work? what does his job entail? How many hours do we work? Who lives in our house? How does William interact with the pets? How is his recognition with people? This one is always a touchy subject as he doesn’t really behave differently towards anyone. I explained we could have walked out that room and left him with her and he wouldn’t be any different. On occasion he will show immediate delight when he sees his Big Nanna or my dad but that is it. She explained how it is fairly common for children with autism to fail to bond with people and parents will often struggle due to their feelings not been returned… well this really hit home and I started crying.
I love William with every ounce of my being but it is disheartening actually more like devastating when he doesn’t care for me in the same way. If I am holding him when he is upset he will reach for hs dad and when his dad is holding him and i got to kiss him he will pull away from away. How will he know I love him if he rarely lets me show it. When we are alone and i’m the only option he will come and snuggle with me but that isn’t because I am his Mum, it’s because I am there.

She listened to his heartbeat and all was fine, took his weight and height and she also flexed his joints, checked out his hands, feet and his birthmark. Is his skin dry? No… I had forgotten about his chicken skin. I always forget about it because to me it is normal as I had it.
Basically chicken skin is a condition called Keratosis Pilaris, it’s basically a build up of keratin in the hair follicles that causes small bumps on the skin. It is hereditary as a few of the women in my family have had it so to us it’s just the norm.

She asked us to strip him off and get him to walk the length of the corridor outside. He did it gingerly, the same way he walks anywhere. She asked us to try and get him to run but he doesn’t run. He never has… we tried to make it a game but he didn’t run just waddled a bit faster. A bit like my version of running 😂 She did speak with us about his walking abilities and how hard things will get when he no longer fits in a stroller and where to look for help. Obviously this wasn’t what we wanted to hear as we hadn’t even thought about the fact he may not get better with his walking so it was a bit of a blow.

She agreed he has a severe developmental delay and the 9-11 months bracket he was put in before was correct. That is 2 whole years behind where he should be. He will be 3 in March which seems crazy as I feel like it was only yesterday we brought him home from the hospital. Although she also agrees that he has severe autism she will not be the one to put him on the ASD waiting list. She wants the speech and language therapist to it. What the actual fuck!!! So let’s just recap who we now know wont, haven’t or cant do it…
* Ourselves
* The Nursery
* His Key Worker
* His GP
* His Health Visitor
* The woman from the Early Years Team
* The Paediatrician from A&E
* The Community Nursing Team
* The Neurodevelopmental Paediatrician
They all agree that it is highly likely he is on the spectrum but nothing has actually been done with that knowledge. If the S&L therapist doesn’t do it then I do know who will and just in case anyone spotted me crying hysterically in the middle of anlaby road this is why.
The waiting list according to other parents waiting time for first contact is currently 867 days. That is 2 years, 4 months and 15 days. 28 and a half months. 124 weeks. 20,808 hours. 1,248,480 minutes or 74,908,800 seconds.
I can’t imagine this wait getting any smaller and the longer it takes to get us on it, the longer it takes to guarantee William the support he needs.

Once again one referral has lead to another and she wants to refer William for blood tests to rule out any underlying issue as autism can often be the symptom of something much bigger. She is also requesting genetic testing.
A genetic test can not diagnose autism or detect it early but there are 100 genes that have clear links to autism but no one mutated gene can cause it. For example there is a clear link between children missing the chromosome called 16p11.2 and autism however one 1 in 4 of those missing this have autism.
This test can give us a reason as to why him? and I know it’s selfish but I think as parents we need to know its not our fault and that we haven’t caused it somehow.

So no answers were given today and today was not THE day we get on the waiting list. We are back in three months and hopefully will feel like more parts of our journey have been completed.

On a separate note we received a message from the nursery today about an exciting new room they are creating. A sensory room! Children with needs like William’s will be able to spend their time in a special environment tailored to them. William’s Key worker Val will be based in there permanently and as William needs 100% support so will he. I am so pleased with this development. They are a fantastic nursery and i’m very lucky we chose them to care for William.

I started writing this at 7pm and it is currently 1:15 in the morning. William has been throwing up since about 8pm. Terrified me the first time as I thought he was choking on it. He only ever been sick like this once before and it was over a year go.
Currently I have a pile of sick covered clothes, cushions and blankets (both mine and his) that need to go in the wash, his pram and travel cot (I didn’t want him in his room alone if he was sick again) sat drying next to the radiator and William asleep on the sofa behind me with a temperature and a towel… Just in case.

Posted in Emotions

Why do you hate me?

Its been a tough few months 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.

We have 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’s 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 in a 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.

Speaking of hosing the boy down, its a 2 man job to bathe him. It sounds awful but it takes one of us to hold him down and the other to clean him. He needs to be held because he starts having a meltdown and can fall and hurt himself. To put it into context some days I feel that bathing a feral cat would be much easier and less painful for all three of us.

He has gotten to a stage now where he doesn’t want to be wearing pants… he will squirm and kick out when trying to put either a nappy or trousers on him and when they’re on he will walk round in circles trying to pull them off until he has succeeded. This was cute the first few times but once he peed all over my Nans DVD player it wasn’t! I thought about braces for him but he cant handle restrictive items so I’m not sure if that is the way forward? I suppose it is just going to be trial and error.

His follow up appointment at the eye hospital has come through to double check his vision. That’s in likes a week time, I am praying they don’t need to use the drops again as he couldn’t handle the disorientation last time and was a nightmare with his saucer like pupils 👀

His return to nursery after the holidays went just as expected. He clung to Dave for dear life despite often not wanting to come home. He has become accustomed to his non-routine over the Christmas break and didn’t want to be away from us. Dave had to spend an hour at nursery trying to calm him down.

I think the support available now from other parents in similar situations is amazing and one of the main reasons I started this blog. There are groups to arrange to meet up or if like me you are antisocial there are just groups to read other experiences and ask advice and support of those who have already been there. There isn’t enough support professionally which can leave people feeling alone and isolated, don’t get me wrong the nursery and Williams health visitor have been amazing but there doesn’t seem to be anyone else at this point in time which is daunting. It feels like it is one person referring to another to another and so on. It feels like they’re passing the book so to speak. I know this isn’t necessarily the case but so many people need to be involved before something happens that it feels like a never-ending circle.

We have an appointment a week for the next three weeks so hopefully we will take a step forward soon. Even if it’s just a baby step 👣

Posted in Appointments

1 step forward 👣2 steps back 👣👣

That face though 💋

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?

Posted in Appointments

In Black and White

A Nasty Reaction

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.

Our 3rd Post

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’