Acceptance 

acceptance

əkˈsɛpt(ə)nsnoun

noun: acceptance; plural noun: acceptances

  • agreement with or belief in an idea or explanation.
  • the action of consenting to receive or undertake something offered.
  • willingness to tolerate a difficult situation.

It seems somewhat trivial to use the definition of “acceptance” as the start of a blog post. We learn from a young age to accept things, to be accepting of situations, difficulties, others and our ability to demonstrate acceptance only strengthens with experience. Whether it is a trivial matter, or something more robust and difficult, we learn to accept things. Sometimes, simply because we have to. 

As aforementioned in previous posts, my father has never accepted my brother… My brother with autism. Dad always wanted a “normal” boy; no doubt someone he could coax into long bike rides, trips to the pub, use as an extra pair of hands down the allotment. Someone to discuss the ins and outs of life with, to watch films with, to have a laugh with. I mean, who can blame him? A father often wants a son; someone to follow in their footsteps, someone they can shape and mould into a ‘fine young man’. It must have been heartbreaking when he realised that he wouldn’t have that with C.

What is more heartbreaking for me, is that he could. Yes, it may not be to the extent that he wishes. But he could take him on bike rides, he could take him for fish and chips and a Pepsi at the pub, he could take him down to the allotment (C manages his own poly-tunnels at college, he’s a dab hand in the garden!)… But he doesn’t. Or at least he doesn’t unless he is goaded in to doing so. 

This rubs off on Dads perception of how others see C. Dad panics when I say a friend is coming over, or brushes off plans with those who aren’t over familiar with C. Excuses of C and his behaviour are often raised: “who knows how he will act”, “he’s too unpredictable”, “maybe another time”. Really, the only person who isn’t accepting C in these scenarios is Dad. 

C has met a lot of my friends, both past and current. Never has he hurt, offended or aggravated anyone. He’s a curious fellow; I’ll never forget the day the girls and I went out for my 18th, and C couldn’t understand the concept of skin colour tights… After asking to touch, he was quite fascinated by pulling them and watching them spring back to our legs. Everyone found this hilarious… Everyone accepted him.

I don’t think Dad will ever understand that my generation is generally more accepting. We’ve grown up being exposed to media and further educational platforms regarding learning difficulties, mental health, physical impairments. We are able and we are encouraged to discuss things that we aren’t too sure about, that we know nothing about, or even things that we may be a little afraid of. Our education regarding those with a higher level of need is much more thorough, and we have been lucky to grow up in a time where people aren’t cast away or locked up on the grounds of their physical or mental ability/agility. 

It is sad that Dad will not accept C. He is tarnishing their bond, and he is not giving C the father-son relationship he craves and deserves. I am grateful however that he is one of the few people in my life that has this view. It is a shame however that he is someone so close to C, and he has an inability to understand him, and most importantly, to accept him. 

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Hypervigilance

I’m not entirely sure how to eek any form of positivity out of this post. To be honest, things aren’t positive at the moment. 

C is riding a tough wave at the moment. It’s hard to say what context lying behind it is responsible for his current presentation, mood and behaviour. Normally there is a shift in his being around school holidays; understandably there is a distinguished lack of routine, change in activities and movements and less regimented structure in comparison to when C is at college. But he has been acting in the same manner prior to the holidays, so unfortunately that cannot be held solely accountable. 

C is being very oppositional currently, very defiant and very controlling. It’s not unusual for him to seek control; his behaviour is often so to gain a conscious lead over a situation or an object due to a lack of perceived control he no doubt experiences in his day to day world. Part of his defiance is age-related (who as a teenager didn’t curse their family or slam a door when angered? I slammed a fair few that’s for sure!) and again, he is demonstrating a need for control and structure. His oppositional behaviour however is what I’m struggling with. 

Currently, I feel I am constantly on tender hooks. C is often unpredictable and quick to act, therefore my awareness of him has heightened as a consequence. Yesterday he was told when we arrived at a pub that we were going for lunch – and in swift response, he thumped me. There was no sign it was going to happen. But he sure can pack a punch. Often when he becomes anxious or stressed, I keep my distance. But in those situations, I can’t exactly keep away. Unless I sit on the roof of the car or something (not a very practical option). 

I’m becoming increasingly frustrated with being the target for when something doesn’t go right. I understand that he gets to a point where he is frustrated or wishes to excel some stress or anger. However it’s hard when you are acting as a human punch bag for your siblings gratification. 

I don’t wish to paint C in a harsh light. I suppose what I find challenging is being accepting of these lashings. If I’m annoyed or upset, I’ll cry, shout or I’ll confide in someone I deem close. C can’t do that; he doesn’t have the capacity or ability to direct his emotions in a manner that will not personally and directly effect someone else. I wish he had a medium or an opportunity to appropriately process his annoyances. I suppose this is something we have to help him with, and I wish to. It is hard being caught in the conflict however, because you have to resist distancing yourself and disconnecting from the issue, rather than actively seeking to understand and support it. 

Support.

support

səˈpɔːt/


verb

give assistance to, especially financially.


noun
material assistance.

1 in 100 children are on the autistic spectrum. Accessing services for children with autism is often challenging, what with “financial burden” often taking priority over the provision of services and support for those with a higher level of need. Difficulties experienced during childhood, unsurprisingly, can often remain during the transition into adulthood. I dislike the cliche “age is only a number”, but for someone with learning difficulties, this apothegm could not be more apt.

Things haven’t been easy in our household recently. C has been distressed and anxious, with his need for ritualistic behaviour in the means of touching, tapping and rearranging soaring. It is difficult to ascertain what is the best thing to do in these situations. Do you –

a) Ignore the behaviour. Allow the ritual to commence. Carry on as usual.

b) Prevent the behaviour. Discourage the completion of the ritual. Block the ritual if possible in a manner which does not provoke nor antagonise. NB: easy said than done.

c) A combination of the two. Allow the behaviour for a set period of time/if it doesn’t interfere with a specific time frame. Try and restrict said behaviours.

 

I’m as clueless as you are. 

Today, this somewhat came to a head. My mother is C’s primary caregiver; by default and unfortunately, by consequence of family dynamics. Mum manages and supports every aspect of C’s life; she is saintly in her ways. However, this morning she had a particularly difficult morning with C, where his need to tap and touch delayed his arrival time at college. The behaviours C displays come and go in waves – he can exhibit minimal to maximum day to day. I received a message from Mum expressing how she felt she was in tatters, and how she felt at a loss with how to help the current situation.

The second definition of support can be as follows:

support

səˈpɔːt/

verb

bear all or part of the weight of; hold up.


noun

a thing that bears the weight of something or keeps it upright.

synonyms: pillar, post, prop, underprop, underpinning, base, substructure, foundation

And here lies a further problem.

C’s social worker has recently retired; despite the social services saying they would be in touch with his new allocated worker, this has not been followed up. C has been discharged from the community nurse due to a perceived lack of need for further support and service. So, presently, who is supporting C and therefore bearing the weight of his difficulties? Mum. And who is supporting Mum? The problem of accessing further support and services not only effects the person in question directly; it effects those who care for them. There isn’t enough support out there, and it is difficult to process and accept that. Why should we have to?

 

Dynamics

The forces or properties which stimulate growth, development, or change within a system or process. The dynamics of changing social relations. 

Interactions, engagements and varying relationships can exist within a family unit. You would hope that the quality of these dynamics are positive, and thus encourage a living environment in which those who coexist can happily bumble along, relatively stress free. Wouldn’t that be ideal?

One thing I have always struggled with is my fathers inabilty to accept my brother as having autism. Going back in time, he told my mother before they decided to procreate that should he have a disabled child, he would not be able to cope. You have to admire his honesty. Unfortunately life is not panned out to always suit our preferences, and therefore our abilities to cope as human beings is often tested. I have a strong belief, or at least I have come to believe, that things are sent to test us and to try us in life. But they are sent to those who can cope, and who will be able to persevere, despite how difficult things appear at the time. 

We are currently facing some challenges with my brother and his toileting. At 19 years old, my dad refuses to accept that his son is “shitting himself” on an occasional basis. Instead of looking for patterns, anxieties or trying to identify causal links to the exhibited behaviour, my dad holds onto this notion and stereotype that yes, at 19, your average person indeed would not be soiling. So instead of being proactive, he becomes angry, exasperated and confrontational towards C. As you can imagine, this isn’t well received. C then becomes angry, exasperated and confrontational (familiar traits, funnily enough). Amongst this all is my mum who has the patience of a saint, and well then there is me, who, if my brother gets too angry and lashes out, will unfortunately be on the receiving end of that. 

The problem with this dynamic is that it is a deep rooted problem that has been ignored for years. My mother always tried to accommodate for my fathers viewpoint and stance on disability, and as a result she has essentially singly raised C throughout his life. She has such a great understanding of C and his needs, of his unpredictable and somewhat confusing presentations. My father on the other hand who has tried to block out the autism within our family unit for the past 19 years, has a somewhat limited understanding, and a clear inability to accept and progress with this. 

So, back to that dynamic. How do dynamics change if those within your family are unwilling to think and about make changes? Well, they don’t. And here lies as you can understand, my frustration. Dynamics can be positive, but my word they can be negative too. 

B-a-n-a-n-a

It takes around six years for a child to develop the ability to be linguistically fully functional, even if the vocabulary at that stage isn’t considered to be sophisticated. Between the ages of two and six children can learn up to ten new words a day. As the years go on, more and more words are learnt and our language can become more complex, detailed, elaborate, engaging.

We take it for granted really. Language is a beautiful, wonderful medium. It allows us to convey needs, wants, desires. We can communicate distress, happiness, anger, surprise, raw emotion. Words are everywhere. We speak them, text them, email them every single day.

Imagine if you suddenly were unable to verbalise all of the above? If when you were upset you couldn’t ask for space. If when you were angry, you couldn’t shout. If when you found something hilarious, you couldn’t even attempt to explain why.

My brother never really developed a lot of language. When he was 15 months he started repeating words upon request. But they would never be remembered the next day, or repeated without prompting. I remember how excited my Dad was when he could get C to say the letter ‘a’ in between the b and ns of banana. C’s lack of language was one of the first warning signs my parents had that something wasn’t quite right with his development.

Now at 18 going on 19, I couldn’t confidently say C knows 16000 words; the average amount a child knows by age 6. I could be wrong here, I can’t exactly remember the results of Cs last review. Mum would be able to tell me and would probably curse the inaccuracy of this if I’m wrong! I wonder if it frustrates him as much as I can imagine it does. Hopefully it doesn’t.

Interestingly, C knows a lot of language, even if he doesn’t produce the words personally. I remember having a conversation a few years ago with mum about my Nana and Grandad, one of whom wasn’t particularly well at the time. We weren’t talking in detail or depth about what had happened, in fact I remember the conversation was quite cryptic. Once we had finished, we started clearing up from lunch. C calmly said ‘Go see Nana and Grandad’.

He may not have a lot of language, but he is intelligent. He picks up on tone, emotion, events. He’s quietly clever. And very switched on. I’ve always wondered what it would have been like had he not been diagnosed with autism. I sometimes think about all the conversations we would have had as kids, all the ones we could have now. I do treasure the small ones I have with him though. He works up on a farm a few days a week and I always ask him what he’s been doing. He may just repeat the same old response every time, but it’s nice to hear about how he looked after the chickens, or did some digging in the poly tunnel. It’s nice to get him to smile too and say ‘nahhhhhhhh’ when I make a stupid, jokey remark.

He may not have a lot of words. But I’m determined to try and make him say at least a few. I know more are hidden within him, even if he doesn’t always want to let them out.

Christmas time, Mistletoe and… Anxiety?

There are a few definitions of Christmas when you turn to google. The first attends to Christmas as “the annual Christian festival celebrating Christ’s birth, held on the 25th of December”. The second details Christmas as “the period immediately before and after the 25th of December”. Christmas to most as a general definition is considered to be a time spent with family and friends, celebrating and exchanging gifts. A time of quality and giving, and enjoyment before the new year.

The third definition from the dictionary however I feel is more apt to describing Christmas in my household:

exclamation

informal
exclamation: Christmas
  1. 1.
    expressing surprise, dismay, or despair.

When my brother was younger, Christmas was a really exciting time. It’s quite hard to establish how much he understands in relation to the concept of Christmas, primarily due to his inability to verbalise his understanding. However he was always excitable, joyous, and when the day came could not resist ripping open his presents in a whirl of excitement. Expressing surprise was definitely appropriate.

Now however, it’s a little different. The build up to Christmas seems to evoke uncertainty. The break in routine from attending college 4 days a week to suddenly having a series of days with less structure is something that does not sit well with him. Although my mother tries to instill structure and organise activities to keep him busy, she cannot be by his side every minute of the day, especially when Christmas wrapping, organising and preparing is underway. As a family we have always tried to ensure that C (my brother) knows exactly what is going on, to try and ease the confusion and increase his happiness around the festive period. We don’t want to see dismay.

Another interesting activity in our house? Decorating. C used to be very involved in decorating the tree. The excitement of it all appeared to engulf him, and he used to enjoy placing the decorations (instilling control over placement; he does like order and structure). This year however, he sat and watched from afar. He appeared interested, however did not want to be encouraged to join in. Eventually he came over and put a few decorations on the tree. However it was more important to him that the packaging, boxes and bubble wrap were instantly stored away again and out of the lounge environment.

For C, the decorations being displayed after Christmas day is another hurdle we have faced. The build up to Christmas (as you can probably pick up on here) is something C does struggle with. After the main event in his eyes everything has to come down, be packed away, and cleared up ready for next year. In essence, why should it not be? It’s done for another year, the day is over, why drag it out? We have managed over a course of a few years to push back the “take deccies down” day until the first day of the new year. It is interesting to see during the prelude to this a few decorations going missing however, and lo and behold, ending up back in their boxes! It is commendable however that C is able to allow a level of flexibility when it comes to the post-Christmas period, something I’m sure some families are not able to implant.

Positively, C does always seem to enjoy the day itself. I think it would be hard for him not to – he gets the presents he’s asked for (this year, it’s Hobbit Lego and a long list of DVDs) and we have a really delicious home made Christmas dinner, which he normally manages to scoff down in a matter of minutes. I find it difficult to support him at this time of year, especially because I am normally incredibly enthusiastic and delighted by the whole affair (at 23 going on 24, this is probably something I should consider reigning in). I often wish I could just sneak into his head for a day, see the world how he sees it. It would make helping and understanding his perspective a lot easier.

This year, we have a further disruption to routine that I am a little concerned about. My Grandma is coming to stay for the festive period. We have always spent Christmas day as our single family unit, just the four of us. My Dads parents always told my father that they “did not expect to see us” and thus, although we would see them for a day at some point in December, that would be as far as it went. We used to visit my Mums parents on Boxing day, however they are now into their 90s and visiting them has to be very well organised and is often difficult to orchestrate. As lovely as my Grandma is, C and I don’t really know her. She hasn’t really ever taken an interest in interacting with us, and in spending time with us. We didn’t ever therefore really form a strong attachment to her. I feel quite reluctant about her staying and therefore I can only imagine how confusing and potentially disorientating it is going to be for C.

I think this Christmas period is going to be an interesting one. We will all do our best to make sure it is a good one for C and hopefully it will be. There is only so much scheduling and preparing we can do. Let’s hope it’s enough for him, and the possible dismay and despair is limited this year.

Watch this space.

 

What do you think of when you hear the word “autism”?

  • Special needs? Learning difficulties?
  • Clever? Talented? Skilled?
  • Disadvantaged? Weird? Challenging? Naughty?
  • Spectrum?
  • Condition?
  • Disorder?

Definitions of autism vary. For example, if you type in “define autism” to google, the following arises:


autism
ˈɔːtɪz(ə)m/Submit
noun
          a mental condition, present from early childhood, characterized by great difficulty in communicating and forming relationships with other people and in using language and abstract concepts.


My personal interpretation and my experience of autism has changed vastly over the years.

A little bit of context for you.

I have a brother who has a diagnosis of Autism Spectrum Condition (hopefully the word “disorder” will seize within the next few years), a diagnosis which he has had since age 3. He is now 18. To say he has been through a lot is putting it lightly. To say this has impacted upon my family would be an understatement.

I don’t begrudge my brother for having autism. I don’t begrudge having a sibling with autism. It has been very interesting growing up with a younger sibling who doesn’t necessarily fit the consensus of what “normal” is.

Interestingly….


normal
nɔːm(ə)l/Submit
adjective
adjective: normal
1. conforming to a standard; usual, typical, or expected.
“it’s quite normal for puppies to bolt their food”
synonyms: usual, standard, typical, stock, common, ordinary, customary, conventional, habitual, accustomed, expected, wonted, everyday, regular, routine, day-to-day, daily, established, settled, set, fixed, traditional, quotidian, prevailing More
antonyms: unusual, abnormal

(of a person) free from physical or mental disorders.
“until her accident Louise had been a perfectly normal little girl”
synonyms: sane, in one’s right mind, right in the head, of sound mind, in possession of all one’s faculties, able to think/reason clearly, lucid, rational, coherent, balanced, well balanced; More
antonyms: insane, irrational


I don’t believe there is such a thing as “normal” when it comes to autism. I don’t think there needs to be. I think defining anything as “normal” in this world we live in is near enough impossible.  

I do think however, I need to express my experiences. I think everyone does. This does not mean they are gospel. They are not defining of what autism is. They are just what I see, and what I experience within my family unit.

When I was younger my mother suggested I go to a support group for children growing up with siblings with autism. I never went. I believe that was foolish and I do not recall why I would not go. I wonder whether I was unable to face up to it, unable to express how I felt about it. I know when I was younger, I felt disadvantaged. At times it’s hard to not feel sorry for yourself. We are only human after all.

This blog is my platform to express my feelings. I do not wish to offend, I just wish to give an insight. I hope this is something people (if anyone stumbles upon this) will enjoy reading, and find honest if nothing else.