Wow it feels like forever ago when we last spoke and to be honest when I look back it really has been.
So much has been going on in the last 12 months or so. I will to do a quick catch up now and then keep you in the loop as it happens. I promise to try a little harder to post here it’s just life has been hard recently and I have not had the time or drive to write.
In May (2023) we finally made it back to Disney World, it was hard work and we had some adjustments to make but we made it work for us. It certainly wasn’t a let down after waiting for four years. We found the rain to be a problem with the electric wheelchairs. The heat was also a problem in terms of regulating Riley and there were times he became ill from it. We are going back this year (2024) and have adjusted our expectations. I will let you know more about this trip shortly in much more detail.
We started our youtube channel, which has done really well in our first year. We have currently put a pause to posting new videos at this time as we have a huge amount going on including lots of changes to our day to day life and we do not have the time to keep up with editing. We have therefore made the choice to pick it back up in May 2024 in the lead up to our next Disney World holiday and then post regularly from there. So for those of you who like a good Disney vlog or want to see how we cope with autism in the parks, keep your eyes open on YouTube living it true (https://www.youtube.com/@livingittrue5). We have some day trips, a Butlins holiday and a WDW holiday up on the site at the moment, if that is of interest to any of you at this time.
Our rock, Richard, the one who is never ill, has fallen. He is really struggling with his health having never really recovered from the first batch of covid and this is a huge adjustment for us. He has had a chronic cough for the last 2 years and is suffering with exhaustion. He also has a weakened immune system so is catching everything. He spent Christmas with a chest infection that took four weeks of antibiotics to clear and he still hasn’t really recovered from it. It appears that covid triggered a rare chronic condition in him but we are still waiting for confirmation from the medical professions.
Lela found her dream house (well dream house currently within her budget) this last June, there have been many hiccups and so many delays but just before Christmas (2023) she moved in. Having had her living with us for the last 5 years, it has been a massive adjustment, for all of us, not just the children. She is at this point more settled and is enjoying her new found freedom and peace.
In September we took the trip of a lifetime. A Transatlantic Disney cruise to New York. Stopping at Vigo, Spain, Lisbon, Portugal and Bermuda. It was an eleven night cruise with 2 nights, three days in New York before travelling home. It was not the dream holiday we had envisioned and was more like a waking nightmare. We did our best to make the most of it and we have some happy memories but overall we were glad when it was all over. Riley was horrendously seasick for 8 out of the 11 days on the ship, New York had the 6th worst storm in their history for the few days we were there, so we barely got to leave our room as the city was flooded. We also found New York to be far too overwhelming (smell of marijuana, too many people, too loud, dirty) for our autistic family members to cope. The best part of New York for us was when we were leaving.
I have been in the biggest flare of my existence. Medical professionals are not convinced it is my fibro or a ‘flare’ however they are working on the symptoms. I have been put on modified release morphine alongside a low dose of Oramorph for when the pain is really bad. It has made a big difference to my life finally after 18 months of hell and I now, most days, have the ability to get off the sofa. We are even beginning to take a few day trips and I am hoping with the spring and the start of the warmer weather the pain will get a little better and I can do a little more.
The children’s education has changed. We are still home educating, that will never change. However we were following a more unschooling approach. This has not worked for us although it does for many PDA home educating families. The idea is the children follow their own interests and do learning around that. My children chose to do nothing educational with their time and have expressed that although they want to learn they won’t without me setting down the work and time for them. We are now following an almost unschooling approach of the children need to give me at least 2 hours a day of educational work and then we have lots of outings and day trips. I have provided them with a variety of ‘educational’ tasks they can do, like create a game on scratch, develop a D&D storyline with props, watch/read something educational and then create a journal type page on the subject. These are just a base and the children can do something else that they have come up with. They also choose the topic of interest, although I have had to put my foot down with them ‘studying’ minecraft!
Although it is what they wanted it has been a huge adjustment period for them that is still ongoing.
We have had bits of the house falling in around us. The downstairs lights blew and we couldn’t figure out why. Eventually we found a light fitting that had been smashed needed to be disconnected from the electric loop and it stopped the board from blowing every few minutes. We are trying to dig ourselves out of the mound of junk we have brought and accumulated over the years and we need to redo our kitchen because drawers keep falling off in our hands. We also need to turn the bath downstairs into a walk in shower as both myself and Riley are struggling to get in and out. We have a lot of work to organise and complete.
Samantha had a freak accident at the beginning of February this year (2024), which saw her catch a ring on top of a very high fence resulting in an open fracture and emergency surgery involving wires. She is recovering but there is a long road ahead before she regains full use of her hand again.
It has been an interesting few months which ultimately has left us with very little time and energy. I always said this blog would be a ‘when I can’ rather than a post weekly kind of thing, however it has definitely been longer than I ever would have intended but ignoring the time to write I haven’t had the inclination or drive. My mental health has not been in a place to be able to share our life with you. I am hoping going forward, posting will be a little more regular, certainly more than once every 9 months. We have a lot of adventures coming up over the next year or two and I am really hoping to share them all with you. So for those of you who have stuck around thank you for your patience, for those of you new here, welcome, I hope you like the small insight into our lives and what it is like living with autism and anxiety.
