Panic attack 

I had a full blown panic attack tonight not had a proper one for a long time as I’ve mastered keeping my anxiety on simmer not boil. But I have so much going on this week with Reilly’s school switch visit, things I won’t mention and the looming summer holidays. No I’m not the mam that loves the holidays because we can do a, b, c and d because we can’t. Simple as that. Summer holidays are hard and are a great reminder of how I am are letting your neurotypical sons down with lack of time and attention.  You feeling my mood tonight? 🙈

Shane my husband has never suffered a panic attack before so here is my description. I feel it is relevant as probably, at a guess I’d say 95% of parents of autistic children will have anxiety. I might be wrong.

Imagine your sitting watching TV or reading a book and a feeling washes over you

A feeling like you just saw the button pressed to start a nuclear war. 

A feeling like you’re tethered to the sea bed and your face is an inch below water.

A feeling like you can see a tornado headed for your house and you can’t reach your kids in time.

A vision of every image from every nightmare you ever dreamt is played on a loop, 

your heart beats too fast, you can’t swallow 

you are weighed down by the problems of people you’ve never even met, 

you are too hot, you can’t stop shaking, you think you might be sick,

you doubt your own sanity and convince yourself that the rest of your days will be spent in this hell hole. 

 You judge your worth as a parent, as a friend, as a wife. 

You pace on wobbly legs to work off the adrenaline that’s coursing through your body and you know that it will pass but that means nothing in this moment. 

That’s what it’s like for me. I’m now exhausted but with a wide awake brain. I don’t wish to see another panic attack for a long time and my heart goes out to anyone who suffers. An easy life would be nice if anyone can get that sorted for me I’d really appreciate it ❤️

Countdown to Ibiza

I cant sleep! We fly on Tuesday.

Reilly is fast asleep and I’m going through my checklist for our holidays for the 40th time.  My biggest fear about going on holiday is a meltdown on the plane which is joint winner with Reilly goes missing in Ibiza.

So instead of just worrying about it i’ve been proactive and looked for solutions.  The airport is fine they know we need assistance and will allow us to board last.  Reilly has watched the videos of airports and our hotel every day for the last month.

I’ve decided to, after talking to the doctor at length to take with us some phenergan which is an antihistamine and travel sickness medicine which has a sedating effect.  I’ve been on the verge of cancelling through fear of how Reilly will be on the plane.  Ellis is anxious about how Reilly will behave on the plane too. This is fuelled by the fact that now Reilly won’t keep his seat belt on and tries to escape from the car seat constantly.  A sometimes controversial subject but one I will argue til I’m blue in the face over.   We did a trial run to make sure he was ok with it on Saturday and he was grand.  Until you have seen Reilly in a full blown meltdown its best not to judge.

Reilly giving us the slip in Ibiza is also something that I just cannot get off my mind.  If a neurotypical child got lost they would be able to tell someone where they are staying, what their name is etc.  If Reilly got lost you wouldn’t know which country he was from so I’v e made some little plastic cards to put in a wallet on his belt or on a lanyard.  It has a QR code so when scanned it contains personal information about Reilly.  The information on his card is written in English and in Spanish.  Hopefully it may help us diffuse any tricky situations before they escalate.

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I have also bought a tracker which will attach to him and if he does give us the slip we could find him quickly.  The chances of him getting away from us is  extremely slim  but never underestimate how wiley a 5 year old can be.   I am like a hawk and have eyes on him constantly but in a time  that its become ok to shame parents on social media and the likes without knowing all the information it really pisses me off.

I’ve had confirmation that the patio doors lock from the inside from the hotel there’s another box ticked.  I hope Ibiza is ready for us.  I’m going to do some video blogs while we are away as I’ve been asked many times if i’ll be blogging while abroad.  Hopefully everyone will get a glimpse of this adorable little lad in his element which is water, he loves it!

Keep everything crossed for us I’m off to lie and think about all the what if’s and other things that might go wrong 🙂  #prayforchristine

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A throwback photo of Reilly. Beautiful.

 

Cramlingtons got talent 

Today was a strange one. This morning was normal Reilly emptied a full huge bottle of Bold 2 in 1 into the washer, emptied a tub of gravy granules and a packet of oats over Miss Rabbit, put my shoes in the paddling pool then proceeded to have THE biggest meltdown I’ve ever seen.  This one involved screaming at the top of his voice and trying to get his foot stuck in the letterbox.  The neighbours must honestly think we are crackers.  This was the type of episode where it does not matter what I do or say it’s got to run its course so all I can do is make sure he’s safe.

 

After approx 45 minutes calm was restored and I needed to get out the house. I ventured out to the softplay at Concordia in Cramlington, Shane was already there at the bowling alley with Ellis and his friend.  The lady on reception was an absolute diamond.  She gave me tons of info on  how and what was available to Reilly via Active Northumberland.  Unfortunately Reilly wasn’t interested in softplay one bit and saw the clip and climb as a much better focus for his attention, trying to get a foot on to scale the massive walls with no fear what so ever.  The staff in there again were fantastic and also gave me details of autism activities such as trampolining etc.  I love it when staff are understanding and make us feel welcome it makes such a difference.

I had no idea what Reilly would think of the bowling alley it’s quite dark and noisy but again he loved it, had to be retrieved from half way down the lanes and attempted to get his legs in the bowling ball dispenser but other than that he was happy. Result.

We nipped across to McDonalds with the boys but the play area was closing.  I had a quick chat with a lovely girl called Rachel and explained Reilly had been in with school 2 weeks previous and that he would expect to go in again because well that’s just what he does. Rachel allowed us in on our own and pulled down the shutters half way.  This equalled 1 happy Reilly which equals 2 less stressed parents.  We chatted to Rachel and Manager Michael while eating and they were incredibly inquisitive as to how they could be more helpful to families with autism. What a difference a bit of understanding makes to our little families.

      What a stark contrast to the bad experience we had when I first started this blog.  I feel like autism acceptance is growing.

Well done Cramlington keep it up. ⭐️

Holiday shenanigans

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After a pretty much sleepless night last night I managed to tie myself in knots over our looming holiday.  After months of convincing I decided last year that I would be brave and try abroad with the family.  We chose a short flight with a short transfer which was 2 major ticks off my worry list.

We are off to Ibiza at the end of June and I am terrified!

I always get anxious being aware from home, it’s in my genes, it’s who I am but by god planning a holiday with Reilly is something else.

Reasons I don’t want to go:

  1. It’s easier at home (I have no proof of this yet 😂)
  2. Reilly doesn’t like seatbelts.
  3. I don’t know how he’ll cope with the airport or plane.
  4. What if there is no lock on my balcony door.
  5. What if the hotel door doesn’t have a lock on the inside.
  6. What if he wanders.
  7. He doesn’t like sun cream.
  8. He doesn’t like other people eating.
  9. He only eats beige things.
  10. What if he can’t sleep and wants to come home.  (This applies to me and him).
  11. I  hate planes.
  12. I’m too fat and have no clothes.

I could go on for hours covering reasons why we shouldn’t go.

Reasons we should go:

  1. Reilly and Ellis absolutely love the beach and the water.
  2. Ellis talks about nothing but going on holiday.
  3. We all need some Vitamin D on our skin.
  4. I really really really want to lie on a sun lounger with a book worry free for two hours.
  5. Reilly loves planes.
  6. I don’t want to cook for 11 days.
  7. I want nice food.
  8. I want to spend quality time with my boys.

So this is what I have done to try and make our holiday go as smooth as possible.

  • IPAD films, programmes, games downloaded.
  • I have played youtube videos of people boarding planes on a regular basis.
  • I have social stories for the journey. Airport Social Story
  • Small presents to be wrapped up in lots of cellotape and put in my bag for Reilly to open on flight if necessary (keep him busy – thankyou Tracey Smith).
  • Ear defenders purchased.
  • Airport emailed and form downloaded to assist us when we get there and boarding the plane last.  Newcastle Airport Autism Info
  • Purchasing a Crelling type harness to use in car and on plane.  No escape mate. Houdini standard.
  • Tracking device to be purchased to signal if Reilly wanders past 30 metres, falls in the water or is kidnapped ( I know but the fear is real).  Attaches to his clothes and links to my phone.
  • Full SPF swimsuit to be purchased and still testing different sun creams/sprays.
  • Plastic plate and bowl going in the case along with mini boxes of cereal.
  • Mam and Dad are coming as backup not just for us but to ensure Ellis doesn’t have a holiday of being restricted to Reilly’s wishes.
  • Hotel has been emailed with prior warning and my concerns about lock and things to climb on the balcony.
  • Asking my doctor for diazepam to actually get myself on the flight.

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Shane and I will split our time so we do actually enjoy some of what our holiday has to offer so it won’t be manic 24/7 but other than this I really don’t know what I can do.  The thought of him crying on the plane for 2 hours is unbearable but he loves planes and watches them all the time,  what if he loves it and just takes it all in.

Am I being selfish? Am I being stupid? what if?  what if?  what if?   arggghhhhhh.

We’ll soon find out and I’m sure the holiday blogs will  be absolutely crackers.

If you have any hints and tips for me please let me know.  The fear is real :).

 

 

 

 

 

 

Judgey Faced Grandparent’s 

 

 What can grandparents do to help their family with an autistic child?

Lots of grandparents feel a bit hopeless when a child with autism comes along.  They’ve had brilliant relationships with the other grandchildren but this one needs a little more work.  This child doesn’t want nursery rhymes, books or chocolate.  I’ve found it’s always parents that are targeted with the awareness and the sessions to understand autism and it’s generally upto the parents to pass that knowledge along.  But who is it who cares for the children when parents have to work etc.  You find with an autistic child people aren’t exactly throwing themselves at your door offering their services.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I have one piece of advice for grandparents stop judging, like really stop.

 

Drop in on your son or daughter and there’s a pile of dishes on the bench, the washing hasn’t been done, the kids are having chicken nuggets for the 4th time this week, there’s toys tipped out of boxes in the living room and the kids have got odd socks on.  The LAST thing they need to see is your judgey face and a sly tut.  First world problems? – I don’t think so.

You see snippets of their stressful lives.  Often running on minimum sleep and maximum anxiety.  Marital problems can creep in and siblings crave more attention.  If you need to pick a battle I guarantee the dishes and washing will not win.  Autism parents can be burning the candle at both ends can’t sleep, won’t sleep being a major issue (if your little cherub allows of course in that 3 hour sleep window).   Exhausted but a mind full of worry waiting on their pillow.  Will he go to school tomorrow?, will he have a meltdown in the taxi?, is he going to eat? Will he sleep more than 3 hours? etc who do we have appointments with this week paediatrician, speech and language, educational psychologist then a little skip forward to what if I die tomorrow who will care for him, this plays on a loop every single night, not just mine but also my husbands.

You can help though.

Mow that lawn, put the washing through, offer your babysitting services even if it’s just for an hour, make them a pie and drop it in for tea.  Little things.

I’m very lucky that my parents pitch in.  My dad takes Reilly for walks and let’s us go for tea sometimes and my Mam does housey things to help, she’s still gets very upset during meltdowns and doesn’t look after Reilly alone, she’s pretty much terrified of him.  Rightly so just 2 days ago he was lining his paddling pool up underneath the upstairs bathroom window.  He never got the opportunity as the window is locked but he literally has no fear of anything other than the stampede on The Lion King.

All hands need to be on deck regardless of whether that deck is strewn with Thomas the Tank toys and the missing odd socks. Team work is essential.  You must remember that lots of parents feel like they are failing without anyone else’s judgement.  We are our own worst critics and trust me we don’t critique lightly.

Nickname for today : Stig (of the dump)

Grandparents all is not lost! watch this space for more info regarding grandparents and autism coming soon.
 Reilly at his Grandad’s.  Nutella on toast every night straight from school.

Walking on egg shells (The kinder variety) 

Reilly is super sensitive at the minute.  He hates lots of things.  His latest is he doesn’t like cups of tea.  Doesn’t matter what colour the cup or what type of tea but he won’t tolerate it in the same room.  We have a one cup boiler and if he hears it he storms the kitchen trying to get on the bench by any means necessary and smash the offending cup.  This is really unfortunate for me as I love tea, I embarrass my friends by ordering tea pots in bars on a regular basis.   I’ve lost 4 cups this week alone. If it doesn’t smash the first time he’ll have it on the second.

I feel like I’m walking on eggshells in my own home.  If I need to cough I run to the garage or back garden so he doesn’t hear.  He doesn’t like anyone eating different food to him unless it’s dominos pizza, we are allowed that while he eats his strippers combo.

When Thing 2 has his tea it’s planned with military precision.  Distract Reilly, grab plate, go go go up the stairs and lock yourself in before he sees/smells it.  I have today for my lunch stood at the cooker eating while Reilly watch Thomas in the living room.  I’m down to my last few plates I need to be careful, I was hungry and I honestly couldn’t be arsed with the kick off it would initiate.

If Thing 1 wanders into the living room with a glass of Coke you would think it was a grenade.  GET THAT OUT OF HERE NOW!! Reilly would fight you for it to break the glass regardless of who you are and what your size is.

I don’t understand a lot of things with Reilly and this week has just given more things to add to the These things piss Reilly off list.  I have been told that he’ll have to get used to it and do it regardless, I would invite that person to come to my home for the afternoon and try this out.  The one and a half hour screaming, holding breath, smashing the house up should be enough to back my actions.

For now I’ll stick to stuffing things in my mouth while my head is still in the fridge or cupboard and stealth missions for a cup of tea.  Tips always welcome 😃.

Nickname for today – Joffrey 

 He did eat purple this week though. Top marks Joffrey ⭐️

He ate purple 💜 result !

 

Strainspotting 

DISCIPLINE:  The practice of training people to obey rules or a code of behaviour, using punishment to correct disobedience.   

Sounds like a Barbara Woodhouse book without the walkies.

Discipline.  I’m not a fan of the word.  I’m a free spirit, the word obey sends shivers down my spine and I’ve never been one to conform but it’s a word I’ve found myself googling a lot lately because:

  1. I don’t know how to discipline my child.
  2. I don’t know whether he should be disciplined.
  3. I’m still struggling to establish what is naughty and what is aughty.
  4. I need to help Reilly with self-control.
  5. The strain of managing Reilly out and about is near impossible.

Can you imagine how hard it is to even attempt to make your child understand that their behaviour is wrong or upsetting when they don’t know how to read emotion, you can’t have a conversation about it and you have no idea whether they understand you or not? When a neurotypical child is naughty you discuss it, remove toys, use a naughty step, ground them, whatever your chosen method and whatever works for you.  I did this with Alex & Ellis, probably once or twice (I did say I was a soft touch).  I can’t do this with Reilly.
A lady coughed in McDonalds yesterday and Reilly stood staring straight at her then lurched at her and pulled her hair.  Thankfully when I explained that coughing is a trigger for Reilly to kick off she was brilliant.  I did my usual No Reilly, nice hands, don’t pull hair and ushered him off into the corner where he decided he would pull my hair too. It was disastrous.  I couldn’t remove him because he won’t walk and I can’t carry him now like I used to.

So question is on this occasion was he reacting to the cough as misophonia, an extreme emotional reaction to ordinary sounds.  Does he not like coughing and just showing his distaste. Was he just being naughty? I honestly don’t know but I find it exhausting.

My fear is as he grows bigger and stronger this behaviour is going to be extremely difficult to handle and I’m searching for ways to communicate behaviours and help him understand.

Is it fair to discipline or punish a child that doesn’t know they’ve done anything wrong? I don’t think so and until I know it’s certainly not for me but how the hell do I work that out.

I welcome any advice from parents of non verbal children particularly around Reilly’s age on how they distinguish between behaviours and what positive methods they use to calm these situations, particularly teaching self-control.  I can’t be the only one struggling with this.

 Naughty or sensory seeking? Who knows?  not me that’s for sure. 

Important talks with Manor Walks

 A few weeks back my family had an unpleasant, upsetting experience at our local shopping centre. I’ll keep it short – Reilly had a meltdown in Asda and my husband took him out, he bolted through the centre to the other side. A security guard then wouldn’t allow them back through to myself and thing 2 even though my husband explained Reilly had autism and was overwhelmed. The guard was completely unsympathetic, the air turned blue and my husband had to walk right around the outside of the shopping centre carry Reilly at night with cars, lights, noises, darkness etc and it’s a fair distance to boot too so you can imagine the state of Reilly and dad by the time we were reunited.  I got home and eventually calmed Reilly’s meltdown after 45 minutes. Thing 2 left to sleep at Grandmas as he gets upset at Reilly being upset and can’t bare to watch.

I settled myself down with a cup of tea and had a Facebook rant, a huge one. I was extremely angry.  This opened a private dialogue with Sarah Turnbull at Manor Walks and I was invited along to talk to Bruno – Manor Walks Manager, Ian – Security Manager and Sarah to discuss what had happened. I attended that meeting today with my sister in law Kelly, moral support and she’s well versed on autism.

I was thrilled to find out they’d already begun staff training to recognise and understand what autism is with the North East Autism Society and were genuinely very keen to make amends, were very apologetic, absolutely mortified at the lack of humility shown and importantly they also invited me to become an ambassador to work with them to improve shopping at Manor Walks for people with autism and their parents and carers. I say people because this is not just about children. Autistic children become autistic adults at the end of the day and are still affected by sensory issues and the same judgemental glares that us parents are subjected to by other shoppers. The ultimate aim is for Manor Walks to reach the North East Autism Society’s charter standard and meet all their criteria to become autism friendly.

  
I will put 100% into working with them to make visiting Manor Walks less stressful. We decided immediately on an autism awareness day right through the centre aimed at educating shoppers and staff of the issues surrounding autism, we all know a little understanding goes a long way.   A shopping event was discussed too with lights low, music off, autism aware staff on duty etc I know this is popular at Christmas was autism families at Toys R Us stores and has been really successful.

Autism needs to be accepted it’s here to stay. I’ve been told numerous times “he needs a smack” “mine would never behave like that” insinuating I’m a bad parent, I’ve also heard “he’s too old for nappies”.  Well judgey woman and friend thanks ever so much for your autism parenting advice based on episode 1 of the A Word and Rain Man in 1985 but I think I’ll give it a miss and politely ask you to jog on.

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Please let me know of any ideas you would like to see implemented and I will make sure they are passed along at our next meeting. Leave no stone unturned – trolleys, parking, lighting, eating, seating, queueing –  if you think it can make a difference share your ideas. I am confident that this will turn out to be a really positive experience making all our lives a little bit easier.  I will be posting further updates regarding Manor Walks as and when they come up.

There is an excellent charity Autism Northumberland based upstairs in Manor Walks already providing great services and facilities to families affected by autism and well worth a visit. I know their opinions on transforming Manor Walks will be greatly valued. 

The Anxiety Society 


Before Reilly was born I was already a part of the anxiety society. That club that no one asks to join and you can’t terminate the membership, a bit like those gyms you join on January the 2nd and continue to pay for the rest of your days.

 I’ve always had spells of anxiety from around 18 but it was never a constant, when I went on holiday I’d want to come home, I’d get that jelly legged feeling and feel dizzy until I was either a) drunk or b) came home, that kind of thing.

I lost my brother aged 32 in 2003 to a heart condition which devastated us as a family, it was out of the blue, sudden and excruciating. Still is.

Thing 2

After thing 2 was born in 2006 I suffered post natal depression (PND) of epic proportions. If there had been space I would have gone into a unit but there wasn’t so myself and Things 1 & 2 moved back to my parents house where I could start medication, take sleeping tablets and actually rest.  I have no doubts without my parents and some great help from my neighbours and a couple of friends I would not have coped alone and I’m forever thankful for their help to this day. There were contributing factors to the PND. Thing 2 had a  condition called pyloric stenosis which meant he was sick constantly not just baby sick but projectile sometimes 10-15 times a day. I couldn’t leave the house without numerous sets of clothing and no one was taking me seriously and I was palmed off as an overprotective mother.  When he was 2 weeks old I received the news that an old friend had horrifically murdered his partner, my god-daughter, her brother and uncle. This man had been in my home, bought Christmas presents for Thing 1 and I was devastated and disgusted that he’d been near my child. This is no great secret revalation I have done newspaper articles to help others desperately looking for answers around PND in the past.

6 weeks later Thing 2 had surgery on Christmas Eve and I spent Christmas Day sat in the cafe at the RVI eating chips and gravy while wondering how close the nearest exit was, whether someone could remove the elephant crushing my chest and why me? I crashed spectacularly.

That’s the short version. Not surprising I’ve struggled I’ve had my share of shitty cards dealt but I’ll not bore you with the rest.  There’s other things but these are the contributing factors as far as I am concerned. I’ve managed to handle my depression and anxiety pretty well in recent years. For a long time it ruled me, I wouldn’t use public transport alone, go anywhere with friends and gave up my job but a chance meeting with an old school friend who later became my husband in 2009 was my turning point. He has had tragedy in his life too but that’s for him to talk about.IMG_0003

We supported each other , we got each other. I remember being terrified on my wedding day that I’d have a massive panic attack saying my vows and ruin the whole day. I didn’t though it was perfect. I’m still prone to catastrophising for example book a holiday see flashes of plane crashes, lose Reilly for 3 seconds = he’s been abducted then I ruminate about it and end up in a right tizzy, building a cycle of fear and anxiety.

Reilly came along in 2011, 7lb 7.5 oz of gorgeousness and it was Love at first sight. I was terrified right through my pregnancy of PND returning. It didn’t, don’t get me wrong the anxiety was still there but I think that’s my life long buddy and he doesn’t seem to be going anywhere so I crack on and deal best I can. Autism came along though quite unexpectantly, it wasn’t anything I had given any consideration and I wasn’t prepared for its effects.

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Reilly

I suppose the point to this post is that the ‘system’ the parents and children have to go through to have their child diagnosed and get them the right help is nothing short of appalling, I cannot speak for all but I speak for many. I was already capable of slipping into dark places I didn’t need a push in that direction. I have never experienced lows like the ones we faced. It can cause problems with your marriage, work, friends and family. My beautiful Thing 2 did not want to sleep at home as Reilly was so wild during the night and could scream none stop for 4 hours which was causing him anxiety at just 8 years old. Our family unit was slipping apart and it’s still not fully fixed, it’s better but it’s still got cracks.  

Being part of the anxiety society I knew I had to become incredibly strong, official meetings sometimes alone and making decisions were something I cried away from but now it was impossible. I still to this day clock the exits and windows in case I need to get out, fleeing that hot, dizzy unstable feeling that comes with a panic attack. I’ve never had to leave meeting but the fear that I will is always there.

During our experience in finding Reilly a school I don’t know how many occasions we were told ‘you must play the game’ to get the help needed. A game where only the loudest, assertive parents get anywhere quickly. I dread to think how many mild-mannered people are being palmed off to this day. Children not in the right learning environments because there’s no provision available resulting in more meltdowns, more stress at home and more families struggling.  I already felt like I was failing Reilly unable to calm his meltdowns, get him to sleep etc without now failing his future and a right to an education that is right for him. We fought, we read guides on the special needs education system and became armed with knowledge. Having a child with any disability is stressful enough without trying to navigate a minefield of sometimes a load misinformation. Too many tears have been spilled over ‘the system’ not just by us, by many.

I still take antidepressants I think I always will, I can’t polish a turd here; it’s not the best but I attend anxiety workshops when I can and I practice mindfulness. I run an extremely successful charity North East Hearts with Goals with my sister in law set up in memory of my brother. Our charity has impacted on 2 gentleman’s lives being saved which is an amazing achievement and an incredible legacy. I’ve given tv and radio interviews and a presentation in front of hundreds. I never dreamed any of this would be possible. I’ve learned to handle it better, it’s never gone away but I can’t sit back and wait for it to disappear because chances are it won’t.

I still check in at my anxiety society every single day, it’s like a second home! Typical day consists of :

  • Will things 2 resent thing 3 for taking so much of my time away?
  • Who will look after them if we are in an accident?
  • Is his transport driver an (insert horror thought here)
  • Will he speak?
  • Will he live on his own?
  • Why won’t he eat anything but chicken nuggets and ice cream?

And so on ….

To negotiate the special needs maze positivity is crucial, I hate negativity and there’s no place for it in my life. Don’t get me wrong we’re still lost but I think we’re headed in the right direction.  My kids are amazing and all 3 of them and I’m sure will achieve whatever it is they desire and we will endeavor to help every step of the way. I would love to see more help and a fairer, faster system for these families from identification and diagnosis right through to living as independent adults.

Autism acceptance is key. It’s here, it’s not going anywhere it’s just a different way of thinking. Remember when you see that frazzled parent sobbing with a child starfished probably with no pants on that chances are they’ve not slept for a year and are under extreme pressure in every aspect of their life.

Be kind as always.

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Diagnosis day

Even though I knew Reilly was autistic I always held onto a tiny thread of hope that he wasn’t   I didn’t want my boy to struggle you see,  I wanted him to be accepted; I wanted his biggest worry to be what was in his packed lunch box.

The day of his diagnosis came in March 2015.  Myself, Shane and Reilly had to attend a meeting with our speech & language therapist and a pediatrician who had never met Reilly before.  This made me a bit nervous how could she diagnose my child in a 2 hour meeting?.

The drive to the centre was awkward.  Reilly kicking off because we were driving down a road that he hadn’t been down before and Shane & I mostly in silence, broken every now and again with a heavy tension filled sigh.

We arrived to cheery faces and a room full of toys, so far so good.  The first part was mostly play based, they played and interacted with Reilly best they could.  We were then questioned about Reilly’s behaviour.  Every answer we gave terrified we’d given the wrong one.  Had we downplayed some of it? probably.  It’s really easy to talk in detail about how great your children are at different tasks.  It is not so easy to talk about things they struggle with and that’s what we had to do. I felt disloyal to Reilly, I felt like I had failed him.

Next we were taken to a small room where Reilly was stripped down to his nappy and a UV light was used to scan him for marks on his skin, they were looking for Tuberous Sclerosis, 50% of children with Tuberous Sclerosis go on to develop ASD.  I had no idea it even existed. It sounded terrifying, life threatening and all I needed to know was that he didn’t have any marks.  He didn’t.

Off we went to wait for them to deliberate and deliver their verdict.  20 minutes felt like 3 hours with constant anxiety and on the edge of a full-blown panic attack.

As we took our seats back in the pediatricians office where there was no beating around the bush, she was direct and she was honest.  Reilly was autistic.  No more might be, maybe, could be – he was.  Even though I was expecting this it felt like someone was standing on my heart.  I could barely breathe and I wanted to run. I wanted out of the office and back home to this morning with the maybe’s and could be’s.

We talked for a bit about how we felt but to be honest I cannot remember what was said.   We left with a pile of literature on help groups and activity sessions.  Buckled Reilly into his car seat as we always did and sat in silence for a bit.  I wanted to throw up, I had the shakes and I know Shane felt exactly the same.  The fear was real, I cannot stress that enough because it is genuine fear of the unknown.  NOBODY wants their child to struggle, they want the norm because its easier; they go to the local school around the corner for nursery and leave to go to high school at the end of year 6, they make lifelong friends; the same.

We came home and told his brothers of his diagnosis.  It made no difference to them whatsoever.  They already knew.   Everybody knew.

I should mention prior to this meeting reports were submitted to help with his diagnosis by his nursery, health visitor, speech & language, education psychologists, health visitors and portage. All unanimous in their verdict.  It took approximately 2 years to get it and the equivalent of the encyclopedia britannica in paperwork.  We are lucky, some families are fighting to get a diagnosis years down the line, it can feel like looking for the holy grail at times.   It is hard and in most cases you must fight for help every step of the way, be vocal and keep at them. If you don’t shout you won’t be heard.

So that’s it. That was diagnosis day.  It threw a major curve ball but it has opened a few doors for us and enabled us to sketch plans for Reilly’s education.

The best piece of advice we had was from my sister in law Kelly who I quote “Is he going to die from it? No crack on then there are others in worse positions” and she was right. He’s incredible.

 He is funny. He is super bright and he is autistic.  He is Reilly and we love him.IMG_6335