A special mind

 

Something happened this week that, on the surface, may seem inconsequential but WOW it made my heart smile.   So, the background is that Issy invented a game that she had Roxy and I playing.  It was very sweet – we each had to take a turn to write the name of someone we love on a Post-it note, crumple the note up, and then fling it in the general direction of the person whose name we had written, that person then had to unwrap the note and be very happy and surprised to find their name in it.  This game went on for a while and afterwards, while I was tidying up, I gave Issy a hug, told her I thought it was a lovely game and that “I love the way your mind works.”  Issy got a very smug expression and said, “that’s because I am autistic, I have a very special mind!”  BOOM….. my heart wanted to explode in my chest!   I literally tear up as I write these words.

Having a child in the family who has PDA is such a unique challenge.  It’s hard to convey the struggles that PDA causes for both Issy and for the family as well.  Imagine for a moment what it is like to struggle to do the most mundane everyday tasks.  Imagine finding the thought of brushing your hair too much to bear.  Imagine knowing that you need to bath or brush your teeth but finding the prospect desperately anxiety-inducing; or knowing that you need to go to the loo but finding it too hard to do until it’s too late.   Wanting to go on an outing but being unable to leave the security of your own home.

For a long time after Issy’s diagnosis, I couldn’t wrap my head around the fact that for Issy (or anyone with PDA) it’s not a case of she won’t do these things, rather she frequently can’t do these things.  I read a post by an adult with PDA recently, where she tried to explain the feeling that these simple tasks induce in her and it brought to mind the way I feel when we are near the edge of a cliff and I really want to see the view, but I am paralysed with fear by the sheer drop in front of me (I suffer from cremnophobia!).   My heart pounds and I get a fizzy feeling in my veins, my breathing becomes shallow and my mind is torn between wanting to do something, knowing I should do it, but being completely overcome with anxiety.  Now picture feeling like that every single time a demand is placed on you…  Then picture being the parent of this child, knowing that they really need to brush their teeth/go to the loo/learn to read/see the doctor etc etc and realizing that they just can’t do it!  Dealing with this 24 hours a day, 7 days a week.  The stress….! 

We are having to learn so many new things: how to word things using Declarative Language (it’s a whole new ball game!) how to find teachable moments in games, when and why it’s okay for her to have screen-time, how to deal with meltdowns, how to pick our battles, collaborative parenting, co-regulating… the list goes on and on… Navigating all of this is extremely difficult but navigating this while at the same time ensuring that Issy feels loved, supported, accepted and celebrated is no mean feat! 

Compounding this is the fact that we live in a society where differences are often viewed as deficiencies.  Where unless you are neurotypical, heterosexual and fair-skinned you are seen as “less than”.   

While we can’t provide Issy with a society that will necessarily celebrate her uniqueness, we can certainly try our level best to ensure that she has a family that does.    And when Issy says “that’s because I am autistic, I have a very special mind!”  That tells me that maybe, just maybe, we are getting something right.

The love I have for this girl

Yesterday our Issy came and gave me a big hug and said "I love you Nana, you always care for me".  It seems such a small, everyday, kind of thing, but those words made such a huge impact on me.  

The way I see it, all that any of us really wants is to know that we are loved and cared for ALWAYS by someone.  That kind of love gives us the freedom to be who we are, to be vulnerable, safe in the knowledge that we will be loved regardless.  Unconditional love.  Issy may not have grasped all of these concepts, but by articulating those words she showed me that she understands that my love for her is a given, a constant.  In her little heart she knows that I always care for her; on her good days, her bad days and every other day.  That's really all I have ever wanted her to know and understand about me.

World Autism Awareness Day 2021

Today is World Autism Awareness Day.  A few years ago that would have meant absolutely nothing in my life, but today it holds such weight.  As most readers of my blog will know, our granddaughter, Isabella, is autistic.

Our family has been on a steep learning curve about autism in the last few years.  Before Issy arrived on the scene, in my mind an autistic person would have resembled Dustin Hoffman’s character in "Rainman" and while that may be true for some autistic people, it is in no way true for our Issy. 

While I am by no means an expert, and I still regularly put my foot in it on the Autism-front, I thought that, in honour of World Autism Awareness Day, I would share some of the surprising things I have learnt about Autism.       

• The first thing that really surprised me in our autism journey is that girls with autism often present very differently to boys.   On paper, boys outnumber girls with autism by four to one (and ten to one in “high-functioning” autism) but it seems that many girls with autism go undiagnosed as their “symptoms” may appear less severe and they are often better at masking.  Tragically, this means that many girls do not get the therapies that would help them and many go undiagnosed their entire lives, leading to depression, anxiety and high suicide rates in autistic girls.  Certainly our Issy has some characteristics which initially muddied the waters and made diagnosis quite complicated.
•  The “autism spectrum” is not a linear thing.  When someone is “on the spectrum” it doesn’t mean that they fall somewhere on a straight line between “mildly autistic” and “very autistic”.  Each autistic person will have a set of traits in different areas of the spectrum and these can vary widely.  There is a good comic illustration of this here.
•  Autistic people prefer to be called “autistic”.  A while back it was considered politically correct to say “John has autism” rather than “John is autistic” but, on the whole, the autistic community prefers the latter.  Autism is part of an autistic person’s identity.  Think about it, you would not refer to a gay person as “Mandy has gay”, you would say “Mandy IS gay.”  Being autistic is something that we hope our Issy will see as a part of her identity of which she is justifiably proud.
• On that note, many autistic people don't like the label "ASD (Autism Spectrum Disorder)" and rightly so, because something that defines who you are as a person should never be labelled a "disorder" should it?! 
• The goal should not be to make autistic children less autistic.  This is HUGE!  Autistic people are disrespected and discriminated against DAILY in an effort to make them conform to neurotypical standards.  For an autistic child to be constantly fed a diet of “what you are doing is not right”, “how you behave is wrong”, “who you are as a person is unacceptable”, is profoundly damaging.  We should be celebrating the unique, wonderful person that we are blessed to be interacting with, instead of trying to change them into a mirror-image of who we are.
• Autistic people do not always lack empathy.  I had this notion that autistic people lack empathy and as it turns out that is not true.  I think the reason for this myth comes from the fact that autistic people don't always grasp social cues.  Issy is blunt to the point of rudeness and she has no filter and very little impulse control, so she can sometimes say hurtful things or not show the "appropriate" and expected emotion, yet she has shown on many occasions that she is deeply concerned about the pain that one or other of us is experiencing.  This idea society has of autistic people always being cold and unempathetic is really damaging and sometimes quite dangerous.

Our Issy is such a ray of sunshine in our lives, but it’s obviously not always easy for an autistic child to grow up in a neurotypical world and THIS is where awareness comes in.  World Autism Awareness Day is not only about acknowledging that autism exists in our world, it’s about learning about it, it’s about seeing how damaging our pre-conceived notions of autism can be, it’s about acceptance and respect and it’s about supporting people with autism and their families and making our neurotypical world a little kinder.

50 things to do in our 50s

This post comes a little late.... roughly 3 years late to be exact... but better late than never I say!

On the way to my 50th birthday weekend away (almost 3 years ago!) Grant and I made a list of 50 things we want to do in our 50s.  We then got distracted by celebrating our birthdays and then emigrating and to be honest we haven't even looked at the list since then, until I stumbled upon it by chance a couple of days ago.  It was fun to look at it again and to see the things we have accomplished, and how many we have to squeeze into the next 7 years!  So here's the list!  I've marked the ones we have done in RED

1. Lose 10 kgs...... rolls on the floor laughing (with the emphasis on the rolls.....) yeah, that one's not going so well!

2. Do another walk on a Camino route

3. Go to Greece

4. Go in a hot air balloon or a glider

5. Emigrate

6. Spend a weekend in Paris

7. Do a walk on the Thames path (we've done a couple of VERY short walks on the Thames Path, but not going to count those)

8. Go to Luxembourg

9. Go to Bruges

10. Spend some time in Dublin

11. Drive the Ring of Kerry

12. Buy a property in England 

13. Spend a weekend away with our grandchildren 

14. See both our daughters happily married.

15. Go to Portugal.

16. See the Rocky Mountains

17. Do another Mediterranean cruise.

18. Spend some time on a narrowboat.

19.Go to the Lake District (Grant and I had lunch there, but I'm not claiming it until we spend a night there)

20. Spend a weekend in Canterbury at the property my ancestors owned

21. Visit the Peak District

22. Go to Scotland

23. Go to Batheaston and Barnstaple where Grant's Richardson family came from.

24. See Ralph and Michelle.

25. Drink champagne in France

26. Go to a Christmas Market in Europe

27. Do a walking challenge

28. Go to Mom and Craig's graves

29. Go as far back as possible on our family tree, all documented and researched

30. Go to the villages in France that my Huguenot ancestors came from (Gill)

31. Spend a night at Lake Eland

32. Get a tattoo (Gill)

33. Swim in the Med again

34. Go to the alps in Winter

35. See the tulips in Amsterdam

36. Go to Devon and Cornwall

37. Own a dog

38. Do a 20km walk

39. Do a geocache in all the counties in England

40. Get a British passport

41. Spend a night in the KZN midlands

42. Make and drink a Moscow Mule

43. Have family photos done

44. Do a puzzle

45. See the Northern lights

46. Take Impi to Corfu

47. See Jeremy Loops in London

48. Walk part of the Pieterpad

49. Do the Notting Hill walk together 

50. Go to Grant's grandfather's war memorial in France

Coronavirus update - September 2020

 I thought it was about time I did another update on the Coronavirus situation.

Things are looking quite different since I last updated!  

On the date of my last update, on the 12th June, the stats looked like this:

Covid-19 stats:

Deaths internationally: 424 716

UK: cases 292 950 and  deaths 41 481

Buckinghamshire cases:1030 and 365 deaths

South Africa:  58 568 cases,  deaths 1 284

Today's stats:

Deaths internationally: 939 968

UK: cases 374 228 and  deaths 41 664

Buckinghamshire cases:2085 and 409 deaths

South Africa:  651 521 cases,  deaths 15 641 <= NB! SEE BELOW

Although South Africa's official death toll is currently 15 641, the excess deaths tell a rather different story.  The excess deaths from 6 May to 8 September total 44 467.  The image below is taken from the website of the SA Medical Research Council

There is a second wave of the virus in a number of countries in Europe and it certainly seems to be heading that way here in the UK, with our daily cases on the increase.  It seems that a lot of the new cases are in the 18-25 age group, possibly because this age group is more inclined to take risks than the older, more vulnerable age groups.  The majority of new cases appear to be in the North of England, but there is an upswing down South as well.

As far as lockdown restrictions go, as of this Monday we are no longer allowed to mix in groups of more than 6 people.  Schools have reopened and most businesses seem to be back to normal, although many people are still working from home.  There are quarantine regulations for people entering the UK from a number of countries.  The wearing of masks in indoor public places and on public transport is mandatory for adults (excluding those with valid medical conditions.)

Life for us as a family is pretty much back to normal, except for the fact that as of Monday this week we will no longer all be able to meet up together.  Calvin and Jonathan are still working from home, but otherwise it is "business as usual".  So far none of us have caught the virus, although Rox's family and Paula had to be tested as they exhibited cold symptoms - their tests came back negative and, as suspected, they were clearly suffering from common colds.

A time to grieve

I’ve been wanting to write this blog post for a couple of weeks… I just haven’t been able to find the words to describe my feelings, I still haven’t to be honest.  I have been going through a period of intense sadness, and for want of a better word, mourning, about our Issy.  What makes it hard is that I am carrying two opposing feelings in my heart at the very same time: on the one hand, I feel so immeasurably blessed to have this precious little girl in my life, and to be entrusted by Rox and Jon with schooling her and caring for her on a regular basis – this brings me SO much joy; on the other hand, as Issy grows up, the difference between her and her peers is becoming more and more obvious and it just breaks my heart. 

It’s difficult because I feel almost guilty for feeling sad….if I’m feeling sad then surely it means that I am not satisfied with who she is as a person?  But I AM, I absolutely adore this little girl exactly as she is, and even BECAUSE of who she is – she is the most unique and adorable little character, she is so funny, and special and she stands so firmly in her own uniqueness, she’s just amazing!  But I am also, undeniably, sad.  

Yesterday Paula and I took her to the park and there were a bunch of children her own age there and in situations like that it is glaringly obvious that she is different.  Listening to the other children chatting, hearing their conversations and watching them play, really brought it home to me that Issy isn’t on that level, she is not the same as those children.  The most heart-breaking thing of all is watching her watching them… there is almost longing on her little face… it tears my heart to shreds to see it.

As if my poor confused heart isn’t overwhelmed enough, there is also anger churning around in there.  I wrestle with God on a daily basis, I keep asking Him “Why? Why us?  Why our Issy?” and the answer I keep on getting is “why not?”  And that really doesn’t satisfy me!  And yet, deep down  inside, I know that asking “why?” is a very pointless exercise – I’ve been there several times before, and I know that there really isn’t an easy answer.  I will never know why, but what I do know is that there are lessons to be learnt, there is work to be done, there are hearts to be healed and there is love to share.  For now, that has to be where my focus is, but it isn’t easy to keep my focus there when the negative voice inside my head keeps saying “this is just SO unfair, this is SO sad and SO heart-breaking and just SO, SO deeply unfair!”   

I’ve learnt from painful experience that, as a family, we have to allow ourselves and each other the space to grieve.  In a situation like this there is grieving to be done – we grieve for the life we imagined for our girl, the path we thought we were on, for those dreams we had for our little girl that we now know will not happen for our Issy.  As much as we acknowledge that our girl has enormous potential and that she is probably going to surprise us with the things she accomplishes, and the challenges she overcomes, there are also some things that we just know are not going to be in her future.  And no matter how much we love and adore who she is, there is sadness in that.

So, in this season, I grieve, but at the same time I look at this precious girl and my heart overflows with love.

Coronavirus update

I thought I'd do a little update on the Coronavirus situation. 

On the date of my last update, on the 1st June, the stats looked like this:

Covid-19 stats:

Deaths internationally: 378 112

UK: cases 276 332 and  deaths 39 045

Buckinghamshire cases:1005

South Africa:  35 812 cases,  deaths 705

Today's stats:

Deaths internationally: 424 716

UK: cases 292 950 and  deaths 41 481

Buckinghamshire cases:1030 and 365 deaths

South Africa:  58 568 cases,  deaths 1 284

Things are certainly looking more positive here at the moment.  I still worry that we might face a second wave though.  People don't seem to be too concerned about social distancing of late.  There have also been a number of cases of people gathering in large groups at beaches etc and there have also been a number of protests recently (Black Lives Matter protests in response to the killing of an innocent man, George Floyd, by police in the USA), so all of these events could well cause another spike of Covid cases.

Non-essential retail stores have begun opening, with more set to open on the 15th.  People are encouraged to wear face masks in stores and on public transport, and anywhere else where they would come into close contact with people.  We had a message from our doctor's rooms this morning saying that the wearing of a mask when visiting the doctor is compulsory.

Single adult households, including those with children under 18, are now allowed to meet with one other household, including entering houses.  They will essentially form a "bubble" which will be treated pretty much as one household.  If someone in that bubble has contact with someone who tests positive for Covid, the entire bubble will need to self-isolate for 2 weeks.  I really, really wish this ruling applied to two-adult households, but it seems they are making this concession only for the mental health benefits for single people who have (on paper) being isolated since lockdown started.

Some school classes have gone back, but although they had hoped to have all children back at school for at least 4 weeks before the Summer break, that does not look likely to happen.  There is even some doubt as to schools opening for the new school year in September.

There is now a compulsory 2 week quarantine for anyone coming into the country, except for those entering from Ireland, the Channel Islands or the Isle of Man.

On the work front, people are still being encouraged to work from home where possible, but most businesses seem to be back up and running in some form, even if not exactly back to normal.  Grant had some bad news last week, it seems the employees at his company will be on 90% pay for the rest of the year, and to make matters worse, 20 staff members will be retrenched before August.  That was really awful news for us, and we now sit with fingers crossed, hoping that Grant will keep his job!  Unfortunately, I think the financial implications of Covid are going to be severe and I have a feeling we will be feeling the pinch for a long time to come.  It was publicised today that the UK economy shrank by a record 20% in April - scarey stuff!

For us, life goes on much the same as it has in recent weeks.  Grant is mostly working from home, but travels to site once or twice a week.  I homeschool Issy from Monday to Thursday, on Fridays Roxy teaches Issy and Dan at home - it's usually an "arts and crafts" type of day that they can both join in on.  Daniel is going to school twice a week.  Paula's university closed early for vacation, they will go back earlier than usual, on 1 September and Paula will go straight back to the placement she was on when Covid messed things up.  She is still on track to graduate in September next year, if Covid doesn't cause further disruptions.  Paula is doing a lot of hourly care work while she is on holiday.  Calvin and Jonathan continue to work from home, being in the IT industry makes that relatively easy.   So life pretty much goes on and we are hopeful that the worst of the lockdown is behind us now.