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My Daughter - Age: 3 Years, 8 Months.

NAS79536

Hi everyone :) 

I was wondering if anyone could possibly offer me some advice. Some guidance. Some clarification. 

My daughter Bella (Age: 3 Years, 8 Months) is the most wonderful, happy little girl and she has bought such joy to my life. I strongly suspect she is autistic. Background: Since Birth, her development has been normal but she has taken longer to meet milestones. She sat up unaided at age 8 months, she walked for the first time at 18 months. There weren't really any apparent indicators for me before the age of 2 and a half. 

Now: Bella isn't toilet/potty trained. She withholds her stools and has done for about a year and a half. She is on a daily stool softener and has been for some time but this is something that has flared up again since I stupidly reduced the dose, so we are back to square one with that. She holds her stool in until she is sweating and crying purely because she doesn't like how it feels. Unless her stools are runny, she can't handle letting it out. With urinating, she refuses to go on a toilet or a potty - she has held in her urine for around 5 hours (being the record) when I was trying to train her which resulted in her making herself unwell. It is not lack of control, she just will not go anywhere other than a nappy and to suggest otherwise causes her such severe distress, we have just stopped trying. (Reward Charts, Bribery, Books about potty training go completely over her head). 

Bella also has a speech and language delay. 80% of her communication is echolalia. All of her pronouns are reversed. She is unable to answer 'Yes' to questions. She doesn't call for me "Mummy?!" or ask for me by name. I can't have any form of chit chat with her. If I was to ask Bella "What's your name?", she's unsure what I mean so cannot tell me that her name is Bella. Equally she's unable to ask any questions back. We paid for a private speech therapist who assessed her and confirmed that 'yes she has a delay' but it didn't go any further than suggesting flash cards (again, went right over Bella's head). 

Bella doesn't play with toys. Her mode of playing is lining up her teddy's in one location and then moving them to another location. Things like doll houses, outside bikes etc are not of any interest to her. She becomes obsessive over certain toys - at the moment, she carries two 'Chico Nightlights' around with her everywhere - she calls them 'block'. We can't go anywhere without her having these big bulky lights with us which can be a bit awkward!! 

Socially, she loves being around other children and doesn't seem to understand 'personal space'. She doesn't play 'with' children but likes to be alongside. She has only just learnt how to 'wave' at others but doesn't use any other hand gestures etc. When excited or happy, she pumps her arms in front of her repeatedly. 

I have been in touch with her GP - Who told me to contact her Health Visitor for an 'assessment'.  I've done this and I am waiting for a response. I guess I wanted to see if there were other parents like me - feeling a little bit overwhelmed. Is there anyone here that is autistic and can identify with some of Bella's traits? The communication barrier and the lack of toilet training is definitely making me feel quite down in the dumps and hopeless - as though I'm not doing it right. I'm failing her. etc. I just want to know that all will be okay and my girl will have a happy life. 

Thank you. 

Parents

  • The toilet issue sounds like a primary concern. Biological health is incredibly important.  I know this may sound awkward, but is she able to watch you in the loo? It's a bit tribal, cave-person style, but it could help. Allow her to come in with you and sit on her potty. You could have a book for you and for her. This turns it into just something all humans 'do' LOL

    Autistic children will grow when ready and at a different pace. Many of us need to understand the comprehensive full-functioning of a thing on a much broader scale, foundation up. Such as taking a watch apart and putting it back together, collecting sundials, studying the history of watch making, time as precision for calculating trajectory, the earths rotation and possibly even maths with time travel. Granted, she's 3. But this system of understanding applies to everything and might help explain how what may seem like a 'delay' on the surface is simply a different method of human growth. 

    Lining up toys is play. It is a curation of aesthetic. Architects, Gallery curators, chefs, coffee tastings, map-making, engineers and so on all deal with the precision of geometry. A hair dresser aligns strands of hair. A massage therapist, acupuncturist re-sets the body. I would give her collexions of items to line up. I have friends who aren't autistic with doll collexions they line up for show. A library would be unhinged were it not lined up properly. From gardening to cleaning, there are so many things she might enjoy which help her begin to curate the world around. When I was small I liked adult things and adult philosophy. I learned adult games. Many toys designed for children have no function: pretend kitchens which don't really work. Pretend food one cannot eat. They might seem appealing but they're useless. Hair which doesn't grow back, pretend tools which cannot build a thing with. 

    I would suggest to use art to help her build her self and her world. And here, One element at a time will be best, "multimedia" can be daunting for young autistics. I would also suggest finding much older recordings of very short nursery rhyme songs. Or read her children's poetry. I would use caution. We are deeply impacted and music can play non-stop in our head, so it's good to be exposed to something you won't mind hearing on repeat and something she can hum in public. This is a lovely engagement for a child who enjoys playing with sound, with tonal expression and sonic bursts - echolalia. This is also form of play, as if the word with it's rhythm and air and lilt can be bounced around in the cavity of one's mouth like a little marble. Playful engaging with aesthetic is the best form of learning.

Reply

  • The toilet issue sounds like a primary concern. Biological health is incredibly important.  I know this may sound awkward, but is she able to watch you in the loo? It's a bit tribal, cave-person style, but it could help. Allow her to come in with you and sit on her potty. You could have a book for you and for her. This turns it into just something all humans 'do' LOL

    Autistic children will grow when ready and at a different pace. Many of us need to understand the comprehensive full-functioning of a thing on a much broader scale, foundation up. Such as taking a watch apart and putting it back together, collecting sundials, studying the history of watch making, time as precision for calculating trajectory, the earths rotation and possibly even maths with time travel. Granted, she's 3. But this system of understanding applies to everything and might help explain how what may seem like a 'delay' on the surface is simply a different method of human growth. 

    Lining up toys is play. It is a curation of aesthetic. Architects, Gallery curators, chefs, coffee tastings, map-making, engineers and so on all deal with the precision of geometry. A hair dresser aligns strands of hair. A massage therapist, acupuncturist re-sets the body. I would give her collexions of items to line up. I have friends who aren't autistic with doll collexions they line up for show. A library would be unhinged were it not lined up properly. From gardening to cleaning, there are so many things she might enjoy which help her begin to curate the world around. When I was small I liked adult things and adult philosophy. I learned adult games. Many toys designed for children have no function: pretend kitchens which don't really work. Pretend food one cannot eat. They might seem appealing but they're useless. Hair which doesn't grow back, pretend tools which cannot build a thing with. 

    I would suggest to use art to help her build her self and her world. And here, One element at a time will be best, "multimedia" can be daunting for young autistics. I would also suggest finding much older recordings of very short nursery rhyme songs. Or read her children's poetry. I would use caution. We are deeply impacted and music can play non-stop in our head, so it's good to be exposed to something you won't mind hearing on repeat and something she can hum in public. This is a lovely engagement for a child who enjoys playing with sound, with tonal expression and sonic bursts - echolalia. This is also form of play, as if the word with it's rhythm and air and lilt can be bounced around in the cavity of one's mouth like a little marble. Playful engaging with aesthetic is the best form of learning.

Children
  • in reply to JuniperFromGallifrey

    You express this brilliantly JuniperFromGallifrey. The best approach is not to be concerned by an autistic child’s seemingly ‘unusual’ (to some) behaviours but rather to ‘tune in’ to what interests them and support and engage with that interest, and have a fresh and positive perspective towards it.

    Obviously some things are inherently problematic (such as the toileting issue) and they cause distress and require effort to resolve. But most aspects of autism can be turned into positives if a parent has the imagination and the will to help their child to do that. There is huge potential in the difference and originality of autistic children.