Posted in Events & Holidays

The 1st Family Holiday 2022

I’ve said it a few times but i’m saying it again, I am really trying to be more open to taking William to experience new things so, in for a penny, in for a pound as they say. Instead of another day out. We booked a weekend away! Talk about going from one extreme to another but you know me, I like to jump in with both feet and then act like I’m drowning 🤣

We booked a little cabin near Malton, Coopers Cabin to be precise. If you click the image it should take you to the link.

Coopers Cabin, Malton Grange Lodges

The cabin itself was lovely, although there was a slight hiccup when we got there, it hadn’t been cleaned which meant we couldn’t relax, they sent a lady (Louise) who was brilliant and compensated with a bottle of prosecco but the whole situation put a massive dampener of the start of our holiday especially with the kids already having a super long day and then not being able to settle down straight away. It’s also made me a bit worried about getting our security deposit back, because the cabin wasn’t as thoroughly cleaned as it usually would have been, I am concerned anything the previous occupiers may have done with impact us especially the hot tub as they state that if the filters need changing they will hold back the deposit, I highly doubt that the filters were checked and we notice there was scum around the filter entrance… we shall see what happens with the deposit. They have been asking me review them already but I shall wait until the money is back in my account.

The cabin was spacious and had a master bedroom with ensuite, a second bedroom with 2 single beds which Wilster and I shared and a pull out double (ish) sofa bed in the lounge. As you may be aware from our usual ‘Annual Hobman Family Holidays’ sharing a room with William is not ideal but its also not always horrendous. He woke me up the first morning by prying my eyelids open and trying to shove my glasses on my face whilst laughing like a physcopath, Thats was 3am… 😴 needless to say I mad my way to the spare sofa. The following day he woke me up by doing was I can only describe as physio, he was stretching and bending my legs and then quicky switched to torture by pulling my big toe and other toes in seperate directions but he also climbed onto my back at one point and fell back to sleep so it’s not all bad and I relish in that moment he wants me as comfort to go to sleep as it doesn’t happen very often.

I worried about taking William on a train but I embraced it and we were lucky enough to catch the Pickering steam train up to Goathland (Heartbeat Land) It was the trains first run out in three months due to the track side fires caused by the immense heat this summer. Sadly it was pulled off after our trip due to an issue with the coal so we were doubly lucky. The noise, smells, movements and people were all things I had thought about before taking the leap, not to mention Williams chair. I would like to give a big shout out to the staff at NYMR especially Adrian Sartain (not sure if I have spelt that right) but he was amazing and really looked after us and put me at ease on what was an anxiety inducing journey for me. I tweeted NYMR so that they would pass my thanks on to him.

I’m not sure why I was so worried because William often surprises me, I have an amazing video of William laughing and giggling whilst I will post to our facebook page. He thoroughly love the journey and proved once again that new experiences aren’t always a bad thing and don’t require my overthinking and stressing (not that I will ever stop) He is constantly surprising me, keeping me on my toes and not always in a bad way haha 🤣

Have you ever felt like an outsider? like you don’t really belong somewhere, having to try hard to fit in but never really doing so… I guess it’s the true sign of an introvert. Believe it or not this statement isn’t about William, it’s about me. I can honestly say that this weekend I truly felt a part of something. I felt so at peace just sat with my new extended family and talking about rubbish, being honest about parenthood, my relationship and not feeling judged in the slightest. I felt accepted without the pressures I have faced in the past to behave as those around me do. Not only did I feel accepted and welcomed but I know that William felt it too, Just look at these pictures and see how comfortable he was.

Our next excursion was Flamingo land, again I was worried. He likes the fair that comes to Hull but its not as expensive and easier to get home and back to his comfort zone.
The first thing I will say, is that it’s soo fucking expensive! We should have pre-booked but because the weather was due to be torrential, we chose not to and boy was that a mistake. £50 per person is daylight robbery especially for a 5 year old!

Flamingo Land has changed alot since I last went (about 18 years ago😱) but fundamentally it’s the same.
Little Miss absolutely loved it, she wanted to go on every single ride but sadly she isn’t called Little Miss for no reason and she was too small to go on the majority of the ones that took her fancy. The log flume was the one she was most looking forward to and she was too dinky, her dad did sneakily stand her in the splash zone at the side of the ride so that they got sprayed as the ride hit the water. I think she took it as a good consolation but we have vowed to take her back next year but measure her before as she needs to 3.6ft tall.
There were plenty of rides aimed at her age height group but they weren’t as daredevilish as she likes.

That being said, she did have an amazing time and thoroughly enjoyed the experience, including going round the zoo section.
Williams experience is a little more difficult to explain, he coped really well being inside the park but I don’t believe he got a great deal of enjoyment from it, at one point he even had a nap but then again I’m not surprised since he had woken me at 3am 🙄 He’s really hard to read during these situations so he could have really enjoyed, could have just tolerated it but I know he didn’t hate it as he always makes that clearly known 🤣

We ate out on both nights at The Smithy Arms, clicking their name will take you to their facebook page, I highly recommend them as their menu was varied, portion sizes plentiful (although if you order fish & chips, don’t be alarmed if half a battered whale turns up🐋) and their food was very tasty without charging the earth. The kids menu was brilliant (every kids meal included dessert) and they were very accomodating for William in his chair. If we book again for next year we will most definitely go back.

Our first holiday in my eyes was a huge success, don’t get me wrong, it was really nice to get home and relax but I would go back in a heartbeat and do it all again… And now starts the countdown to our next adventure 🥰

Get new rants delivered directly to your inbox.

Please remember to check us out, and follow us on our social media pages 🙂

Facebook – https://www.facebook.com/ourjourneyontothespectrum
Instagram – https://www.instagram.com/ourjourneyontothespectrum/
Twitter – https://twitter.com/OurJOTS

Posted in Events & Holidays, Reviews

Paw Patrol Live – 07/08/2022

After the success of Peppa Pig, we were super excited to see Paw Patrol Live… Expanding Williams experiences and opening him up to new things can be so exciting but nerve wracking too. I made myself a promise that I wouldn’t let my worry or anxiety stop me from taking William to new places or events and I am trying my best to stick to it.

Obviously Little Miss came with us too, It’s great to be able to do these things as a family and brings us all so much joy to continue to blend our family into one. 👨‍👨‍👧‍👦

Paw Patrol ready x

So this photo is a bit misleading, let me explain from the beginning…
Trying to obtain access for Williams chair was a bit of a nightmare, I was diverted to ticketmaster who told me they could only deal with sales, despite their email being the one to contact in relation to accessibility. Then I was sent to the ticket provider which was Sky who said they couldn’t help me and I would need to contact the venue direct which I would have done had I not been told to go to all these other places… Sky gave me a contact email for Bonus and no one replied for over a week until I chased them and forwarded my original email. They were apologetic and swiftly organised the access for us but it should be much clearer on how to do this when obtaining tickets from a third party. I want to also add that there was an out of order sign on the lift meaning if access was required to the higher levels, it would not have been possible.

Disabled parking was brilliant, there are multiple free spaces on the road around the arena and we easily found an open spot despite the show being quite full. There are pay and display car parks very close by too however I can’t comment on the disabled spaces as we didn’t need to use these but parking in general seemed plentiful so if you are planning on going to the Bonus Arena, you don’t need to worry about that aspect.

The lobby was busy and loud, once again merchandise is shoved in your face, just like it was at Peppa Pig, we had already agreed that the kids wouldn’t be getting anything this time as they can’t expect a toy on top of a day out every time. I am glad we had made this decision in advance because they were selling holographic photo cards in which one of the Paw Patrol pups changes into your kids face… for £25!!! £25 whole pounds for a piece of card! Merchandise stands were place in the center of the lobby meaning you had to walk past it to enter the arena, because we had access tickets we entered via a different door but still had to pass this area should we need the bathroom. I don’t agree with this, I have said it before but it puts parents who can’t afford merchandise in awkward positions when their children want these items, we are in the middle of a cost of living crisis after all.

I can not comment on the disabled toilets as William didn’t need changing and when I needed to go, I used the women’s… I had a little look at the door when I went passed and from what I could see, you didn’t need a radar key but I wouldn’t quote me on this as I was desperate for a wee.

Back to the performance… William became upset as we entered the arena. You have to remember that its a large room with high ceilings so noise does carry. Our seats were in a good location but not as good as the chair spaces are Bridlington Spa, we were next to the entrance on the right hand side when looking at the stage meaning a lot of footfall passed us and a side view of the stage. Whereas at the Spa we had an elevated view of the stage which had a better view and no footfall. Both sets of seats were really good but when comparing them, Brid Spa wins hands down. The seats at The Bonus Arena are removable so I think there is maybe a better location for them to seat wheelchair users, even if its just to be away from the footfall as a few kids nearly walked into Williams front wheels.

Comparisons for disabled seating.

William continued to cry and be distressed up until about 20 minutes into the performance. The lights were super bright, the noise very loud and I was about to leave with him when he suddenly started laughing and clapping, I literally felt this wave of relief and laughed with him. I’m so glad I persevered and let him adjust to the noise, lights and surroundings but I did feel like the worst mom in the world for a while. That much so that I bought £15 worth of guilt popcorn, It’s like normal popcorn but at cinema prices 🙄

The popcorn was a huge hit as you can see, with Willster eating both buckets 🤣 but £15 is a bit steep and it wasn’t even at butterkist standards. More like a cheap packet from home bargains which goes to show what the profit margins are for these vendors at shows like this.

He enjoyed the show whilst he was scoffing his popcorn, we left just as the show was ending which was lucky because as we entered the lobby we heard what I thought was a confetti cannon or a minor explosion, unsure which 🤷‍♀️

I don’t think we would go to a show at the Bonus arena again due to how loud it is but it hasn’t put us off as we will definitely be going to more shows but at different locations. I’m grateful we had been to Bridlington Spa first otherwise my opinion may be different, We won’t be paying pantomime prices so if anyone has anyone has any recommendations on shows in which we won’t need to sell a kidney to pay for, please let me know 🙂

Much love 😘, M.x

Get new rants delivered directly to your inbox.

Please remember to check us out, and follow us on our social media pages 🙂

Facebook – https://www.facebook.com/ourjourneyontothespectrum
Instagram – https://www.instagram.com/ourjourneyontothespectrum/
Twitter – https://twitter.com/OurJOTS

Posted in Events & Holidays

Peppa Pig Live – 23/07/2022

I despise Peppa Pig, in fact I think in my last post that I referred to her as a talking piece of bacon but lets be serious… she is an absolute brat but… the kids love her 🙄

Let’s put it this way, Peppa Pig Live was not exactly on my bucket list but William’s Aunty Debbie was kind enough to get us all tickets. She’s really good like that, tries to push me out of my comfort zone whilst be ridiculously nice haha. I would never have gone, not just because she needs to be in a sandwich but because I would have been so anxious about how william would react and if it would be too much for him but after our successful beach trip, I was all in.

I love our little blended family and this was the first big event other than Hull Fair that we have been to like this, so that added pressure maybe didn’t help my anxiety but despite this I was actually really excited.

The performance was in Bridlington at the Spa, starting at 10am so it meant we had to be fully on it in the morning to get everything in the car, the kids fed and sorted etc. Since the performance was in Bridlington we took advantage of being at the beach and the fact the weather was going to be nice and decided to make a full day of it so the car was pretty full with beach toys, blankets, picnic, the works.

A stressed but happy family at 8am 🥰

The drive down was easy, both kids were happy sat in their car seats as we sang along (badly) to cheesy music. It honestly felt like we arrived within seconds rather than 45 minutes.

So now onto some bad points… have you ever tried to find disabled parking in Bridlington? There is a place near the Spa but it seems to always be full. there are no sign posts indicating disabled parking anywhere. We parked at the harbour an managed to get a spot that had extra room to be able to get Williams chair out of the car, this wasn’t a disabled bay, just a lucky find.

Let’s talk about toilets, anyone with a child or a person that needs assistance in changing them will know that some disabled toilets are just not suitable. Imagine my surprise to find these… ‘South Cliff Gardens Public Convenience’
For the first time in forever, I remembered to take Williams Radar key and I am so glad I did… I’m not sure if I am overreacting but I feel like I have hit the jackpot for fully accessible toilets.
Handrails, space for moving a chair with a large turning circle, sharps/hazardous waste bins, adjustable electric changing table, in perfect working order and a fully working electrical hoist system. I was honestly amazed and had to take some photos (once I had changed William obviously) All the equipment was clean and worked perfectly. If you do visit bridlington and are in need of an accessible bathroom then I would highly recommend this one! 🏆

We made our way to the Spa with plenty of time to collect our tickets, I had called them in advance (a few times🤣) to ensure they had a wheelchair space available for us. I would hate to have to disappoint the kids if it wasn’t accessible to us once we had arrived. The staff had reserved us the wheelchair space and 3 accompanying seats in advance which meant there was no hustle and bustle once we had arrived. The spaces were in a perfect location meaning that we had full visibility of the performance but were also away from the bulk of attendees which I think helped William acclimatise to the noise. I think if the performance had been full then he may not have coped as well.

The show started and William was a little upset however he soon realised that he wasn’t been tortured (although I was 🤣) and that it was actually something enjoyable for him. He laughed, he clapped and ate all the snacks. He love it, as did Little Miss who was singing, dancing and joining in with interactive songs and I will only ever admit this once but it wasn’t actually that bad. The show focused more on a human rather than Peppa which made it bearable. I would even go as far as to say that I would take the kids again… Why wouldn’t we want to go when they both loved it so much?

We are back onto the conversation about toilets, the show was about an hour and twenty minutes with a mid way interval. They sold Mr Moos ice cream so Liam & Little Miss grabbed us some whilst I took William to the toilets. The disabled facilities where also baby change facilities which meant there was a large queue with it being a children’s performance. I understand when places need to do this but somewhere as large as Bridlington Spa should be able to have separate facilities or incorporate baby changing into the mens and womens toilets (because let’s face it, men change bums too but yet places tend to put the facilities into only the women’s! 😡)

The toilet was tiny, the first picture was taken with my back against the closed door, the second from the same location as the changing table was in sort of a recess.
The changing table was not suitable for William, It was not built to hold his weight… I thought I was passed having to change Williams bum on a dirty toilet floor, sadly I was wrong. If you aren’t going to have fully accessible toilets (handrails do not make you fully accessible!) then at least have a clean fucking floor! 🤢

The kids fleeced us for merchandise, Little Miss got a glittery pink tote bag and Will;ster got the Mr Dinosaur soft toy which was a massive success. I mean they were super expensive but worth every penny. The venue isn’t daft as they place the merch stand in a place that is unavoidable upon entering or leaving the performance and even had a gent who stood at the from of the stage before the show, advertising the toys. It may put some parents in a horrid situation in which they maybe can’t afford to buy their children these items in which they are having waved in front of their faces. Young children don’t understand that money isn’t always readily available.

Once the performance was over we headed off for lunch and went to the Stirling Castle. Little Miss had a cheeseburger kids meal and William had a sunday dinner, both of them did really well with their food and they were perfect portions for children. The pub itself was very accomodating, lots of space to navigate the chair, no overcrowding and patient staff who didn’t scoff when William started throwing his chicken on the floor, I do pick it up though. I didn’t check out the toilets but I would still highly recommend them for a quick lunch. Pricewise I think it was good too, about £35 for 2 adult meals, 2 kids meals and 4 drinks.

Then time to get sand between our toes, we grabbed our picnic stuff, beach wear and found a good spot on the beach. William immediately tried to run off into the sea. I think I upset him a little since I stopped him in order to change his clothes but once he was sorted he was off. Little Miss was a bit more patient and was happy playing in the sand rather than wanting to swim out to sea. Liam took William as far out as he could, William was laughing and splashing the entire time, then Little Miss was ready to go for dip. William had a bit of a shutdown at this point, I’m not sure if it because he was cold, the sensory aspect of wet sand, clothes etc or maybe he just wanted to be back in the water but he picked his usual position…

He reached out for my hand and stayed there for quite a while just blocking out the world (I think we all wish we had that ability and I would class it as a superpower.🦸‍♂️), once Little Miss was out of the sea, she decided to comfort him and stroke his back. I have the most adorable video but I am unable to share it as my video editing skills aren’t very good and wasn’t able to hide her face. She did something similar not too long ago and I shared a small post and photo to our facebook page. Check it out by clicking here. Kids are so amazing in the way they just assess emotions and react.

Our final little bit of excitement before heading home was on a search for seafood, ice cream and donuts. William got his sugared donuts that he usually has at Hull Fair but I think the excitement was too much for him by this point and he maybe only had one small bite at a push. Liam searched for a dinosaur shaped ice cream (George had one in Peppa Pig 🙄) as that was all Little Miss wanted but nowhere sold anything like that so he fobbed her off with mint chocolate chip claiming it was ice cream that dinosaurs eat, he’s lucky it worked to be honest although he did end up wearing most of it as she was sat on his shoulders eating it and it was everywhere 🤣🍦 I am definitely my dads daughter and got myself some welks and a lobster tail which I imagine would have been really nice but a seagull decided it would be nice too, so hit me in the head and took the lot 😫🦅 I manned it out though, waited until I was out of the crowd before whinging about it and asking Liam if it had pooped in my hair. I know I have a big forehead but its not big enought to be a landing strip for birds!

The journey home wasn’t as fun as the journey there, Little Miss was fast asleep within seconds of her being in the car and William decided it was the perfect time try and eat as much of his nappy as humanly possible. We had to do an emergency pull over on someone’s drive to sort him out… It was the most stressful 15 minutes of the day, having nowhere to pull over and knowing I couldn’t do anything to stop him but it was all new for us so we will remember this next time and make sure he is more restricted in his clothes because there will be a next time… We must be gluttons for punishment. Paw Patrol Live here we come! Plus another day out at the beach with the full Hobman clan! 😲😜

ItemScore
Parking5/10
(It is available but there isn’t much of it and it’s not well signposted)
Bridlington Spa5/10
(Customer care & seats would make it a 10/10 but the toilet situation would be a 0/10)
Peppa Pig Live10/10
(Highly recommend for young kids or those with special needs.)
The Beach8/10
(Very clean but not too accessible, had to walk quite far for a ramp to go down with the chair)
Stirling Castle7/10
(Food good but not great, price reasonable and pub clean.)
Company 10/10
(Is there anything better than spending a day with your family?)
Seagulls0/10
(They owe me a fiver for the seafood! Flying B*****ds!)

I would take a 100 seagulls to the head to have more amazing days as a family, we might not all be blood but history has shown it doesn’t really matter. Much Love, M.x

Get new rants delivered directly to your inbox.

Please remember to check us out, and follow us on our social media pages 🙂

Facebook – https://www.facebook.com/ourjourneyontothespectrum
Instagram – https://www.instagram.com/ourjourneyontothespectrum/
Twitter – https://twitter.com/OurJOTS

Posted in school

26/04/2022

I would like to take this opportunity to apologise for the fact I haven’t written a post in a while but last week was a big week for us and a very emotional one. I felt that it wasn’t the right time to do any kind of writing so that I could process that William had finally gone to school.

I had been very honest about how I was feeling in relation to William going to school and had taken some time off to come to terms with this big adjustment and to be there for William every step of the way.

I’ll kick this off by sharing some photos of his first day, we came together as a family (as we should) to be there for William on his first day, I think it was more of a big deal to us than it was William.

26/04/2022
26/04/2022
26/04/2022
Proud mommy – 26/04/2022
William and his daddy- 26/04/2022

William was an absolute superstar, he was so excited to get on the bus and start his educational journey. He loves travelling so choosing to send him on transport was most definitely the right option… well the only option since I don’t drive myself (although driving lessons are now booked 😬🚘) but even when I do, or if I do, I think I will still send him on the bus as he’s made a friend and it’s so good for him to have that 1 on 1 social interaction although today he did get moved this week because he was eating the little boys coat 🤣 Pica at its finest.

I’m not going to lie and say I wasn’t a mess on his first day, second day and so on but seeing his face as he got on the bus was so fulfilling that I genuinely forgot about all my own fears and doubts, my own insecurities just fizzled a little. His face, full of confidence and joy made me feel worthwhile as a mother. I have done a bloody good job so far and now his teachers can continue with his education and help him develop and I will continue to help turn him into the lovely little boy he is and the amazing man he will grow to be.

I’m sat here at 11.47am on a Thursday, my house is clean and I have the time to sit and write this, watch some TV and just breathe… it’s an odd feeling but not the horrendous one I thought it would be. I’m not breaking down or feeling sorry for myself. My little boy is growing up and starting a journey in which he should have started last year. its hard when he doesn’t want to get off the bus on a night because i have this little voice that goes ‘he doesn’t need you now’ but that’s not true. We always need our parents. I’m in my thirties and still need my mom to tell me everything will be ok. William needs me, just not as much as he did before but i’m ok with that… we need to let our kids go so that they can fly and he is doing that.

We have this whole new support network in his teachers and his passengers assistant on the bus who is amazing and so lovely. She called me a few times the first week to let me know how he was on the bus as she saw I was upset. His teachers email me updates and there is an app in which they upload photos and comments. They have their first parents opening soon for the queen’s jubilee in which they will do a parade around the school, sadly I can’t attend but Williams dad will be going to support him.

I’m excited and nervous to see how school will help him develop but it’s a whole new chapter and i’m excited to start sharing it with you all. Much love, M. xx

Get new rants delivered directly to your inbox.

Please remember to check us out, and follow us on our social media pages 🙂

Facebook – https://www.facebook.com/ourjourneyontothespectrum
Instagram – https://www.instagram.com/ourjourneyontothespectrum/
Twitter – https://twitter.com/OurJOTS

Posted in Appointments, Brief updates

Wheelchair services

It’s been almost 2 years in the making but today, Williams new adaptive stroller finally arrived.

If I start from the beginning, we asked for a referral via our health visitor who put the request through our doctors. Who lost it after a year despite me chasing it repeatedly 🙄

A second referral was put through after weeks of chasing our doctor… apparently there is only 1 doctor for everyone in Hull or at least that’s how CHCP make me feel.

Let’s just point out that in this time he had fully outgrown a standard stroller and I had purchased a second hand adaptive Maclaren Major Elite stroller specifically designed for children from 6 months to approximately 8 years. It was expensive but worth it and William was comfortable and safe. It wasn’t going to last us forever but would do until we got sorted because let’s remember, covid fucked us in regard to appointments and referrals for the last 2 years.

The actual appointment with wheelchair service came much later, in fact it was October last year. Williams dad took him and he was assessed by a clinician, a clinician who decided that a Maclaren chair wasn’t suitable and he wouldn’t issue one for us but would look at a PWB which is a personal wheelchair budget and we could potentially gets a different stroller as long as its deemed suitable. Brilliant!

Fast forward 2 weeks and there is a fucking wheelchair sat in my hallway!

The delivery guy came and I turned him away. This wasn’t right for my son. We had discussed the issues with a wheelchair like this, in ridiculous depth with the PWB worker but she sent the chair back and I was forced to accept it. It just took up space in my already crowded office.

They all agreed it wasn’t suitable for Williams need so why was it sent? Why would they not collect it claiming it would leave William without suitable provision. That whole scenario was just mind numbing. How could a self propelled wheelchair be suitable for William? There was exposed velcro which would cause him sensory problems. Plus many many more issues including hygiene and safety with William being able to access the wheels.

The woman who dealt with us said she was referring it back to a clinician to get us a Tendercare Snazzi stroller but then she left NRS and it was handed over to someone different. The gent who took over ignored all calls and emails and only came back to me after I went on social media and Trustpilot publicly shaming them for failing to assist my son. Then he was suddenly able to reply to my multitude of emails.

Suddenly a Maclaren was suitable but they couldn’t provide one due to stocking issues but they can offer me the Tendercare Snazzi. I immediately accepted it and queried when delivery would take place and collection of the chair. I felt the Snazzi was suitable for his needs and that’s all that mattered.

But wait…

The Snazzi is out of stock 🤔 but they can offer me an off brand Maclaren knockoff or a Tendercare Snappi. The PWB guy told me to take the knockoff as similar to what we asked for… you know the one they were telling me wasn’t suitable for my 4 year old but designed for much younger 🙄 Needless to say I declined this option and went for the Snappi.

And based on his face… I made the right decision.

It’s been a long wait and it’s been worth it in the end but there shouldn’t have been a such a wait at all. There are so many failings in the NHS in regard to referrals themselves and again with services such as NRS. I hope they take my trustpilot review on board and look into what went wrong so that no one else goes through the heartache of chasing a service or even just replies that aren’t coming.

Apologies for spelling and grammar etc but I’ve wrote this one on my mobile 🤣

Get new rants delivered directly to your inbox.

Please remember to check us out, and follow us on our social media pages 🙂

Facebook – https://www.facebook.com/ourjourneyontothespectrum
Instagram – https://www.instagram.com/ourjourneyontothespectrum/
Twitter – https://twitter.com/OurJOTS

Posted in Reviews

Paddy and Christine McGuinness: Our Family and Autism – Review

Was anyone else massively disappointed with ‘Paddy and Christine McGuinness: Our family and autism’? I can’t be the only one who watched it and when it was over thought ‘is that it?’

The very beginning of the documentary was raw and even painful, as Paddy told the camera’s he didn’t know if he kids loved him or knew he loved them; it hit home. My partner reached for the tissues as I immediately started blubbing as it resonated with me. I think it’s a fear most parents have, not just those with children on the spectrum, but for us it takes a lot longer if ever to have that question answered. I for one often look at William and wonder, he will do things that often make me think he loves me, but this is often his way of using me as a way to meet his wants and needs, as the educational psychologist so coldly put in his report (credit where credit is due, he warned me that it would be a hard read)

I loved that Paddy met children at his local school, to speak to them but I was a little riled up when one of the children expressed how she spirals into anxiety about the thought of being late to school and its consequences and Paddy simple said ‘that’s normal’ I may be reading into it but the girl went of camera after this and the reason stated was that she was overwhelmed but I took what Paddy had said in a bad way and maybe she did to… maybe I’m over sensitive but that made me feel he was saying she wasn’t normal, I’m not sure why my mind thought that but it did and I can’t be the only one.

I loved the fact he met up with Paul Scholes and discussed his son Aiden with him who is 16, non-verbal and has some complex needs, it was refreshing to see two men who have influence and the ability to help with autism awareness, be so honest about their struggle, their fears and hopes for their children. I had no idea Pauls son was on the spectrum, let alone about the journey they have gone through together. I will definitely be doing more reading on their journey as I have recently seen an article about how he was worried he would have to put him into care, I think it would be a hard read but am looking forward to it, I enjoy reading about other parents and their journeys which is why I feel a little disappointed by Paddy and Christine’s documentary, it felt rushed and not about what parents like me face… the fight for diagnosis, the struggle to obtain financial support, the fight for the right education. I guess it just shows that having money does get you further, their parents may have money but that doesn’t mean their kids such get preferential treatment to those who need the support from poorer families.
Another prime example of this is that Christine did the AQ test and was shown to have autistic traits and by the end of the episode they were saying she had a diagnosis!

As much as I appreciate them bringing such widespread awareness to autism, what I want to see on the screen is a real-life expectation of the journey, show me the parents like me or those worse off. Show me the desperation and fight just to get our kids what they need. Document the 2 plus years of waiting for an official diagnosis, the fight with DWP to obtain DLA in order to buy specialised clothes, bedding and toys (and the rest) for our kids. The fight to get into an adequate school or any school at all… I’m not saying Paddy and Christine’s struggle isn’t real as I really appreciate all they do for awareness and if I had the money, I would do the same thing but for most parents it’s just not possible. I want realness on the TV, I want the next parent who doesn’t know what autism is until its their own child has something they can use as a guideline, so they don’t breakdown like I did. I don’t think it’s too much to ask, is it?

Get new rants delivered directly to your inbox.

Please remember to check us out, and follow us on our social media pages 🙂

Facebook – https://www.facebook.com/ourjourneyontothespectrum
Instagram – https://www.instagram.com/ourjourneyontothespectrum/
Twitter – https://twitter.com/OurJOTS