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Guest post: Life with my son Jude

AliceSAliceS Member Posts: 22 Courageous
edited July 2017 in Guest blogs
I want to tell you about my son Jude and some of his eccentricities. It's good to share!

We are a family based in Hertfordshire; my partner and I have three children, the eldest being our 10-year-old son, Jude.
Three children eating food at a red dinner table.

Jude has microcephaly, global development delay and undiagnosed autism (but it's so obvious, I can't even begin to tell you!). Our girls are seven-year-old Elsa and 11 month old Emmeline, and they have a varied relationship with Jude; well Elsa does anyway.

I recently asked Elsa how she feels about her brother. Here's what she said, in her own words:

What do you like best about Jude? 
"That he (*sits silently for a while and then whispers that this is very hard!*) plays with me sometimes. I like that he's crazy and does funny things."

What frustrates you about Jude? 
"He annoys me by making silly noises and he makes words up like Elsa nee Elsa, Elsa nee Elsa, over and over again. He takes stuff from my room sometimes, once he took all my lego and I'd spent ages making it. It was the fire engine and I found a few of the front bits on his bed."

How do you feel when he has tantrums? 
"Bored, because there's no one to play with because you're always having to sort Jude out. So yeah, just bored."

Does it upset you? 
"It doesn't really bother me that much, I'm used to it now."

What do you think Jude will do when he's a grown up? 
"He'll probably live with someone, he might have a few pets because he really likes animals. He'll probably have a king sized bed. He might learn to play an instrument as he really likes music."

What sort of job do you think he'll have? 
"He'll be a clown in a circus! Or perhaps he could do a job like selling cars if he gets a bit more clever when he's older. He could work in an aquarium because he really likes fish but he'd have to remember to feed them and clean them out. Maybe we can get him a fish tank and some fish so he can practice looking after them." 

What games do you like playing with Jude? 
"Hide and seek but he cheats by looking. We used to play jumping games onto the bean bag and make a slide and slide down it off the bed but we can't now as he won't let me in his room."
Young boy in a white shirt holding up a drawing to the camera
I was also thinking about Jude's funny traits and thought I'd write them down as no doubt in a few months he'll have a load of new ones...

  • When he gets out the car, he won't shut the door himself, he says he can't do so. The minute you start walking towards him, he shuts the door with a bang.
  • If you open your window, he has to open his. Ditto the sun shield!
  • He needs a plate to eat ice lollies.
  • Before he goes to sleep, he likes to play with building blocks in bed. He lines them up according to colour and then moves them round in a strange little code only Jude understands.
  • He still won't wear socks.
  • Glasses must be hidden at all times. As in the reading glasses, sunglasses variety. He can't stand them!
  • A new one this week...when he's in the garden bumbling around on his go kart, he keeps moving the watering can and lawn mower bag into random places. It's like he sets them up a few metres apart then he drives his little go kart around again and a few minutes later he moves them again. Always a few metres apart on the grass!
And the doctors need to do tests to confirm his autism?!

Do you have any sibling tales to share, or funny traits that you can recognise from what I've written?

I'd so love to hear you all, as I truly believe that by sharing ideas, it helps us all feel better about the difficult times and revel more happily in the good.

Replies

  • YoungCarerOverHereYoungCarerOverHere Member Posts: 50 Connected
    What a lovely, relatable post :smiley: Elsa sounds like a very intelligent and lovely girl considering how difficult autistic siblings can be at times!

    My brother (ADHD, ASD and autism) has to have a plate with ice lollies and ice cream too! He also has a thing where after he's read someone a bedtime story he has to SLAM the thick book shut. It makes me jump so much!!

    Thanks for showing that individuals with autism and other disabilities have such shining personalities.

    Take care!
  • AliceSAliceS Member Posts: 22 Courageous
    Hi there

    How funny to find another plate loving ice cream eater!

    It's good to talk about and "normalise" (if that's not a bit of an oxymoron) funny traits our children have as otherwise I think people can become a bit over anxious about stopping them. Some of the things Jude does are just bizarre but I'm slowly learning that a) he can't help it and b) as long as it doesn't hurt anyone then just leave him to it!

    Thanks for commenting.

    Alice
  • ck1268ck1268 Member Posts: 7 Listener
    Hi im glad you shared , my daughter has rituals where things have to be even.
    the colour orange she hates and it gives her a bad feeling. ditto with purple.
    she is overly polite and will say thankyou several times until i usher her on, its robotic like.
    she will not use car door at all, i have to open then she has to get in without touching the door.
    she will say things that are inapprpriate she asked me if god was a man would he have a penis as his wife was a virginn, this was all learnt from christmas at school.
    she told her teacher that she wore too much makeup and that she didnt lke the colour of her knickers that particular day.
    she planned and escaped school i got an angry call from school, i had too stop laughing to talk and th head teacher was not amused.
    whilst in a cue she asked why the man in front had black skin but pink hands on the inside.
    this is just the last 7 months and not all of them lol but she lights my world up x
  • mossycowmossycow Community champion Posts: 486 Pioneering
    Oh really enjoyed hearing about your kids. Especially as I love Fish to and would love to work in a massive aquarium.

    Thanks for post

    "I'm trying to live like a random poem I read that ended 'to bloom where we are planted"

  • UniqueearthlingUniqueearthling Member Posts: 5 Listener
    Both my children have difficulties, and so do their children, but have worked hard always.My oldest is nearly 50 but he is in a high paying job and is on the outside very together,But he suffers with OCD, not extreme but likes perfection and things being the same, He is methodical and funny, but also finds it difficult to empathise. My younger son has high functioning aspergers, and dyslexic. and his son ADHD, i feel sad that all these were from me, as i am discalculaic, wrong spelling i expect. I am also chronically ill. i have autoimmune diseases and now have cancer let alone suspected parkinson's and Hashimoto's, no thyroid. brittle bones etc. Cant go into it all. But that was just a quick synopsis on me, , but my eldest son i believe his difficulties is brought on worse by anxiety, which both of them suffer from. Because they neither make a fuss, they wont go to the doctors, i think been 3 times in their lives. But to be honest i don't think doctors care. CK i can relate with her honesty, my eldest is like that. Not always received well, but he does not care. I believe that's his anger and frustration issues..He pushes people away, as says he doesn't need them, but then after a while he will say he feels lonely. I live miles away and see neither of them and Grandkids only on face chator what ever it is called. It doesn't matter how old kids are they are always our babies and i worry very much about them.
  • newbornnewborn Member Posts: 473 Pioneering
    Thank you for this thread.
  • Pippa_ScopePippa_Scope Member Posts: 5,856 Disability Gamechanger
    Welcome to the community @Uniqueearthling, and thank you for sharing your story with us. This thread is quite old and so you may not get responses to your post, however you may like to join in with our more recent parents and carers discussions too. Wishing you and your family all the very best!
  • newbornnewborn Member Posts: 473 Pioneering
    It is informative, and funny.  It won't reach all those who would benefit from reading it, if it is buried in the children's corner.

    It is interesting to the general public, and to adults who are themselves affected, or who live, work, socialise, are related to,  or care for adults  affected.

     People who are currently children are vastly outnumbered by those who no longer have the label 'child'.

    Undiagnosed adults could do with a general public having comprehension.   One frightening story sticks in my memory.     What do the experts on this site think of the following............Wouldn't  the victim seem like a lifelong undiagnosed  high functioning adult?

    A power drunk social worker (are there any others?)  had taken offence at lack of the obsequient attitude she expected.  She punished the offender, by  having her dragged from home by a large group of police and ambulance crew, her head covered in a blanket,  and taken away to be locked up.

    At first glance, it would be assumed this must  be a case of a demented and physically abused or at risk person, being removed to safety.  Not so.  It turned out her highly paid daughter had abandoned her career, converted her home to include a granny flat, and was ensuring her perfectly intelligent  and mainly healthy mother was coping, despite some increasing arthritic difficulties with housework and cooking.   

    Why didn't  the daughter simply get a  cleaner or helper?  Because mother, and everyone who knew   mother, realised that mother doesn’t  relate to people in the standard way. She wouldn't  tolerate cleaners, nor would they tolerate her.  Her late husband, and all her family, were used to her.  Her ex colleagues had learned she had her own, unusual, social interaction  . 

    Her neighbours either accepted her, including her disconcertingly direct manner of speaking, or else avoided her,   if they couldn't cope with making adjustments.  All her life, she would, for example, do the tea and biscuits social niceties, up to a point, then announce she had had enough, and leave, or if the visitors were in her house, they would   leave.

    The daughter had, disastrously, asked if the council could assist with advice on something or other. (DFG?)  That had resulted in the social worker calling in, the daughter providing tea and polite chat.  All fine, but then mother entered the shared space. 

     She was introduced, 'behaved' conventionally politely, briefly,  then returned to her own part of the house,  pursued by the s.s. woman, who demanded "I want to talk to you".   To which, mother replied perfectly reasonably "well, I don't want to talk to you, I didn't invite you to MY home, please go away now."

    That perceived insult stirred the ss woman into full punishment attack, using her unchallenged power.   As one remarked in my hearing "We can do as we like, and write anything. The courts always believe us"   Another of them (ironically a neighbour, while having tea) mused how little the general public realised, about the total power she and her fellow S.S. ( social services ) workers hold.



       

     
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