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Help me please - long but I really need help

63 replies

HugAndRoll · 29/08/2013 14:24

You may have seen my posts before I have ds1 with possible asd (going through testing) and ds2 with marked hyper mobility possible eds (going through diagnostic process).

Today I am very much struggling with ds1 and need help/to vent. I have had to put him on his bed and close the door as he is currently on meltdown 7 today and I've completely lost my patience.

Things that have caused issues today:

  • breakfast was at the wrong time.
  • at lunch I served my homemade bread. This was "the wrong bread" as it wasn't "the red bread" (braces white medium sliced).
  • he couldn't complete a level on angry birds.
  • the tablet ran out of battery.
  • he had to come off the tablet (biggest one).
  • I suggested going to the library to change his books.
  • I asked him to go downstairs as he was in my bedroom.

I have lost my patience as at least some of that is typical 5yo behaviour which I need to tell him off for but OMG when I do he screams in my face, sometimes lashes out, slams doors, throws things around, kicks doors and walls and I just can't take it today.

He is worst for me and seems to hold it together more (but not entirely) for others. Others also have more patience than I (dm, mil, dsis etc) and I feel it's my fault this is happening.

What can I do? Posted here due to the possible asd and maybe me needing to take a different approach. Paed and SALT both say asd just waiting on September for ed psych referral to go in, classroom assessment by paed and for an OT appointment for his sensory issues.

OP posts:
PolterGoose · 30/09/2013 17:00

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PolterGoose · 30/09/2013 17:00

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HugAndRoll · 30/09/2013 17:26

We have an OT appointment tomorrow too - got a cancellation which is fab!!

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HugAndRoll · 30/09/2013 17:27

Me too polter as I'm slowly losing the plot Grin.

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PolterGoose · 30/09/2013 17:29

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HugAndRoll · 30/09/2013 21:46

Thank you. They rang me back to make sure he would be ok with the location, if we needed to bring another family member, if he had a favourite toy (no he doesn't play lol) and if he could cope with 1.5hr appointment so I'm impressed at the moment.

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PolterGoose · 30/09/2013 22:58

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HugAndRoll · 30/09/2013 23:25

Fab, thank you, you're a wonderful person Thanks

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HugAndRoll · 01/10/2013 12:41

I have come away totally confused and I don't really know what happened. Fragments of what happened I was told are below:

  1. DS doesn't seek touch he seeks proprioception.
  2. He seeks proprioception because he has low muscle tone and slight hypermobility they should see ds2
  3. DS "audiotaory processing sensitivity" is not actually that it's beacuse he has low muscle tone, some hypermobility and as such this has made him seek routine and he only likes to do what he can do and knows so when we try and get him to do something outside that he melts down.
  4. It's not a sensory processing disorder it's a developmental delay.

It's numbers 3 and 4 that made no sense. If he's seeking proprioception, regardless of the reason, surely that's a SPD and how can his muscle tone make him totally freak out if a police car drives past with their sirens on?

They did motor skills tests with him and he is delayed so he will have to go to group therapy in the new year for that. I'm just totally confused about what they said. Are they saying they don't think he's on the spectrum but it appears to us that he is due to low muscle tone?

Has anyone else heard of that?

OP posts:
HugAndRoll · 01/10/2013 17:02

Bumping please.

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PolterGoose · 01/10/2013 19:13

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HugAndRoll · 01/10/2013 19:59

Thank you so much.

Yes to weighted blanket etc, going to see if I can try before I buy though.

We have a questionnaire to fill in now so hopefully that will give them a better view of him. I'm taking it back on Friday as ds2 has a paed appointment re: hypermobility anyway at the same hospital so it's easy to do then.

Will pm you my email address now, id be really grateful for any information you have. You should become a specialist health visitor because you're so reassuring and helpful and I'm a pain in the ass

OP posts:
HugAndRoll · 03/10/2013 19:05

I spoke to the HV and she said we saw the head OT who is amazing. There is a link between muscle tone and sensory issues so I'm going to be a bit more open minded about it all and try not to worry about everything.

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