Again a bit of a shout out to the Yorkshire Wildlife. News of my oh so slow mobile phone camera focusing system has got out. Another kindly soul hung upside down long enough for a focus of sorts. Thank you.

As son was happily perched in front of the TV watching a Pokemon movie I took the opportunity to take the pup for a walk. Hence the photo above. It was a short walk, no more than 15 minutes. When I got back home son was not there. Clearly he had gone looking for me. Before I could get out of the door he returned. He has gone looking for me in his bare feet. That indicates the level of the panic attack.

That’s why the school holidays will be based around me and my shadow – or better the other way round. He lets me into his world and that is the coolest thing ever. Now brief solitary dog walks are out then its unlikely we will be separated over the next 6 weeks. I suspect many parents will experience a similar feeling.

Opinions differ on the future. One of his Paediatricians said

“He will eventually grow out of this clinginess. In a few years you will have to face getting your life back on track”

However one of the best clinician I have come across (unusually a caring expert in autism) argued

“He may learn to have a level of independence. However I think the balance of probability is not heading in that direction currently. You should prepare for a life long parenting commitment.” – that was when we had two Parents and two Grannies (now it’s just me)

For me this raises 3 fundamental issues

  • What’s the Plan B if something or when something does happen to me. It’s not a straight forward problem as my brother and sisters are at least 10 years older than me. Practical options are a tad limited.
  • As he gets older the minimal support he gets from the state will disappear. Sadly that’s just how it is. It is not viewed as a priority. Let’s face it – clearly it’s not as important as something like funding tax breaks for the rich. REALLY. As a society we should be better than this.
  • Everyone is different and I have come across examples of wonderful individuals on the spectrum who are successfully keeping down full time jobs. But the evidence suggests that a fundamental problem all too frequently exists. Many on the spectrum struggle to keep down full time jobs. I have seen stats which indicate the Autism unemployment rate can be as high as 85%. Some will be fully dependent on full time help for life. Those parents are unbelievable heroes. I am in complete awe of you and the daily sacrifices you make. I have read a number of Aspergers stories recently of people who have developed levels of independence and who have tried to work. The message was hauntingly similar. Countless jobs started well but they started to struggle with time keeping, office politics, social interactions and multitasking. Office small talk was alien to them and they became isolated. Eventually they became ostracised or the butt of colleague jokes. Employers seemed oblivious to the issues surrounding autism in the workplace. Anxiety and Depression kicked in, sick days started then the job was gone. Cast adrift again in the alien world without any support.

Every person is different. Things can work out well but they can clearly also go badly. I need to get my head around this and start preparations now. This could be a lifetime project. Which brings me to one last thought. Last week someone said to me

“Your still relatively young. It’s such a waste. You just need to get through the next few years then he will have his own life and you can start living yours again.”

Currently that outcome is not part of my plans. Years ago I had personal dreams but now they are gone. They went with my partner. I’m here now to do a wonderful rewarding job and I will give that my best shot. In the end that’s what any decent parent would do.

  • 90 thoughts on “Patience needed”

    2. That’s a wonderful (and honest) reflection. I have discovered (in my semi-dotage) that sometimes we’re so busy waiting for some great break-through that we forgot to enjoy the ride! Your photo of the butterfly is perfect – it’s engrossed in the current flower at hand and yet collecting pollen for the future!

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    3. Such hard questions. Declan is also my shadow. Afraid to be alone. When I take the dog for her morning constitutional I hear the door open and close behind me. Even sleeps on an air mattress right next to me. Where he is now I had to be sure a counselor would be in his cabin with him as he fears being alone. What would happen if something happened to me and the rest of the family? Would anyone be so kind to give him that closeness? Or would he be expected to “get on, on his own.” So hard to think about. It’s challenging to live. I think you are doing a phenomenal job for him. Really, really do.

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        5. Not yet, but I totally thought of you today. I was at the gym and it was arm day. I swear by the time I was done I went to wipe sweat from my brow and missed my face. My arms were JELLY! So, of course, I thought of you and our super powers 🙂

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        6. Is it bad that I laughed so much at that. That’s cheered me up no end. I remember once doing a weight gym circuit. Just finished 1 minute of press-ups and the whistle went. I crawled up and the instructor tossed the medicine ball to me. I couldn’t lift my arms up and the ball rather sadly hit me straight on the nose. I staggered about for a few seconds before collapsing backwards over a work bench. Never did that session again with the shame.

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    4. Ben is lucky that his Auntie is six years younger than his Mama and fully prepared to take over if some were to happen to Mama or me. Plus he has his godmother, Mama’s BFF, who has an autistic younger brother as another back-up. I know how lucky we are to have that worry taken care of. Ben will need 24/7 support (barring a miracle) for the rest of his life.

      People comment that I’m a hero or similar things for devoting myself to co-parenting full time. I’m no hero. Ben needs me and I love him. It’s very simple. It would be nice to use the bathroom without him banging on the door for me to get out, but for now it is what it is.

      You son (how old is he?) may be able to achieve some independence *because* you are making him feel safe now. Keep following your heart. I think you’re doing great!

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        3. Not at all. I just look at the enormity of the field you furrow with, what my soon to be released on the world new heroine would say, was sod all help. So all power to your elbow, to you.

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        5. Sorry, just wading amount of emails here and finally getting to the end of them. Yeah while this is set in Cornwall, the heroine’s mother was from Yorkshire and she speaks like her. That just developed as it went cos I rather like that sod all attitude. Oh and Yorkshire is a place we love to visit, not just York .

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        7. It is quite soomthin that accent .Trulay. For me in this case, it has given me this heroine. ( Lol, I just had a prob explaining what that accent was doing in Cornwall with the smugglers but hey, I think I soddin’ coovered it.) A Very great place. We weren’t down this year but hoping to get back next

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        10. It must be 20 years since I’ve been to Dundee. First place I came across a deep fried mars bar. Bizarrely remember having a bottle of lager and saying to the the guy behind the bar that it was one of the tastiest ones Ive had and it’s from Dundee. He just gave me one of those looks and said that’s Dundee in the US.

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        13. The V&A has changed things a lot. There’s aswathe of cosmopolitan eateries, drinkeries, ..hell even before that there was what they call the Latin Quarter that sprung up round the DCA. Quite a thriving live music, big name gig and coffee shop scene. But yep the people are still the people.

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    6. What is it with English bees and butterflies?? Sometimes i can get lucky and a bee will bee focussing more on his job collecting pollen than being too wary of the big lumbering thing with a camera trying to take his picture, but if i so much as look sideways at a butterfly resting on a plant from less than 20 feet away it will instantly take flight and find somewhere ‘safer’! ?? You can poke a big shiny thing practically in their faces and they just sit there giving you their best side. “I’m ready for my close-up Mr de Ville!” ??

      Still, it’s a lovely shot! Have you seen how it looks rotated 180 degrees?? Works well! 🙂

      I’m no expert in parenting (No kids!) but i can see things from several perspectives at once, which i find can help when making decisions.

      Every parent – sorry every DECENT parent – wants to see their children grow up with the best start they can so as to allow them to grow into an independent person who is able to make the best choices to live their lives in hopefully a better style than we achieved.

      From providing them with 100% of their needs at birth most parents gradually are able, over many years, to let the child take on more of their own support until eventually the child may one day return the favour and provide for them in their dotage.

      As you point out in your 3rd issue, many people with Aspergers or Autism may become somewhat self-sufficient in a typical work environment or work situation but they still do not fully ‘fit’ the round hole of a regular job, which can then lead to problems at work or even losing employment.

      I suspect that is a path your son might be better off avoiding and learning how to become more self-sufficient through his own individual works. With your capable assistance, and that of caring and supportive others, if possible?

      On a different subject, i know your son is good at arithmetic, how is he with geometry – i have a couple of issues i’m trying to get a grip on? I may need a fresh perspective! 🙂

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        1. Our workplace anti-discrimination ‘guidelines’ mean some employers are considering it – particularly when there are government financial incentives on offer (funny that)… but it still does not stop workmates from being jerks. 😦

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        7. I was checking York weather records yesterday… 34 would be the equal all time high for that area! I heard Paris sett two all time high’s on successive days this week.

          Meanwhile back in fantasy land Down Under our emissions of CO2 have been slowly rising for the past 3 years. We have a recently re-elected ‘conservative’ government along with a Prime Minister who once brought a lump of coal into the House or Reps to show the way of the Future! 😍
          https://theconversation.com/that-lump-of-coal-73046

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        10. The case in point is looking at our new government. A leader sacked multiple times for lying. A person in charge of policing sacked for inappropriate behaviour with another foreign power. A foreign secretary who seems to think women are getting too much equality. An education secretary who was sacked for leaking official secrets and the odious Rees-Mogg given a job….

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        18. Dang! I forgot about the limerick challenge!!! 🙄

          I accept your challenge and offer you ‘Jalapeno’ as a riposte!

          Heh heh hehhhh! (you know the image) 😉

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        24. I think a demonstration of the ‘safety’ of coal is in order.. lets all get a lump each and throw it directly and with force at any politician we can find… see how long they continue to say it can’t hurt you!

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        26. We could try… Or stop the coal companies paying the politicians and employing them when they lose their seat in Parliament?

          I still like the lump idea though – if everyone did it they could not jail the whole population! 😉

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    9. Will your son become eligible for sheltered housing in time ? My English sister in law has a son who is now about 45 who has been living in sheltered housing since he was 29, when she moved out here to New Zealand to be with my brother. He suffered severe brain damage during a very bad asthma attack as a very young child. This sheltered housing was set up in 2003 so the situation may be different now. Concerns are now arising for his well being as available family members are not able to care for him. His father in the same city is nearly 80 and in very poor health. His mother in New Zealand is moving through dementia to the point where she can no longer live alone. And his brother way south in London has to hold down his job to support his child as well as his wife. As the son in sheltered housing is already settled there apparently suitable carers can watch out for him. But it is difficult when all three immediate family members are losing the ability to support him.

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    10. This is very much to be taking on board. I guess with your partner no longer here the clinging falls extra hard on you, I hope that you get other support too. Its so enlightening to read this, I hope in years to come people with Autism or Aspergers will be understood and accepted more, but my heart does feel heavy for you reading this. You are a wonderful parent, really you are, I feel that so deeply in my heart. ❤

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    17. In spite of everything your outlook will help carry you through. It’s so great that you see that you have a wonderful rewarding job. You and your son are lucky to have each other.

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    18. I know you’ll do your best, and hey, it is AMAZING what changes come in even 5 years. I’ve seen it in my kids, and I know you see it in yours. Give him time, love, and hope, and see what grows in him. xxxxxxxxx

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