Latest Updates

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I’ve not been able to post as much over the past few weeks, much to my disappointment, as I’ve got so many posts to write! We’ve been so busy with the start of the school term and many different appointments which are all helping to support Lou, which I’m very grateful for!

Today I received a report from Occupational Therapy, (after our appointment last week,) which outlined that Lou struggled with gross motor activities, often trips over things and lacks spatial awareness, something that I’d definitely agree with! It was noted how she couldn’t settle on an activity in the OT’s room and was trying to gain my attention in any way possible. I’ve noticed this before, as Lou dislikes it when I talk about her to professionals. It was interesting that the OT picked up that:

“Not all difficulties can be solely explained from a sensory basis, her emotional and behavioural response to demands placed on her or requests to comply, particularly at home also impact on her development.”

This is exactly what I’ve noticed from 18 months old and has been one of my greatest worries, there are huge behavioural and emotional problems, particularly at home. Which is the questions I’ve had about the ‘other’ factors that may accompany Sensory Processing Disorder.

I have been given some great hand-outs on Postural and Limb Control and Stability, to help with the hypermobility aspects. And the gross motor and spatial awareness. I will receive a visit from the OT next week at home, as it was so difficult for me to take in the information whilst also ensuring Lou didn’t run out of the door, which she attempted several times! The OT is also going to visit Lou at school to see how she functions there.

Today we saw Lou’s Peadiatrican, and again, Lou was extremely lively! She loved the examination couch as usual! And liked the antibacterial hand cleanser very much! We had the same behaviours as when we saw the OT with constantly trying to gain my attention by running out of the door and wanting to go to the toilet several times! We talked about the main issues on anger, aggression and frustration and about eating. It was agreed that the best way forward is to see how Lou settles in full time school hours as this will tell us a lot, with certain activities going to be put in place to release the sensory overloads throughout the day, will she still hold it all in and explode once reaching home? Lou will be seen again in January 2017, when we’ve seen her at school for a whole term. As we’ve talked about previously, there’s no doubt that Sensory Processing Disorder is there, but the next question is if this stands alone, or if indeed there is something else that’s accompanying this. It was noted that there are traits of ADHD in Lou, especially the hyperactivity, but Lou is still too young to go through the assessment for ADHD. There are also traits of ASD but again, we need to wait a bit longer to see how she gets on, as I agreed that many 4 year olds display as energetic! We need to know if this is going to carry on, or if it will settle.

To conclude, what we need to do is carry on with the visuals, visuals, visuals and take all the advice given. Looking back to that black pit that we were in last year when Lou’s behaviour was blamed on our parenting skills, (thanks for that goes to our old Health Visitor!) We have come a long way, we are now being listened to and I feel that Lou is receiving the help and support that I’ve been fighting for now for over 2 years!

2 more bits of ‘news:’

  • I’ve reached 800 Twitter followers 🙂 Massive thanks to everyone!
  • In October , as a family of 4, we are being photographed for the charity ‘Family Fund,’ to be used in their marketing materials!

 

Thanks for reading 🙂

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Wow what an appointment!

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Today we had Lou’s first Occupational Therapy appointment, she was definitely in her ‘worse case’ scenario mode to be observed, after having a massive meltdown after coming home from school, I think the change of routine may be finally hitting her. And being an afternoon appointment, she was tired and non-compliant. I needed the OT to see this. It was confirmed that Lou certainly has Sensory Processing Disorder, she is a huge ‘sensory seeker‘ and has quite a substantial case of ‘Hyper-mobility‘ in her joints. As she placed her hands onto the examination couch the amount of flexibility in her joints was very noticeable. What this essentially means is that Lou’s joints move more than say, my own, and she has to work harder in aspects such as gross motor skills.

The OT noted that Lou is a very hyperactive child, who is always on the go, always searching for sensory experiences, she stomped around the room and tried to escape from the room to run upstairs in the building several time, I could see that the OT was nodding, and say “Yes” she’s seen this before and it all seemed to make sense! It was like a light bulb moment to have someone agree with what I’ve been harping on about since Lou was 18 months old! As Lou rolled over a special tube, I told the OT that the ‘special tube’ to roll over at home is usually her sister, Moo.

I wanted to ask so many questions, but it was so difficult to talk and keep half an eye on Lou as she was rolling over the examination couch! As soon as we reached home, the OT called me and arranged to visit my home to talk in more detail whilst Lou is at school. what we will also get is further support in terms of a course to explain more and further support in terms of activities that can be done to bring Lou’s level of activity down to a mid-level, as she is functioning on such a high level of activity at the moment and she has to learn to regulate herself, all fascinating to hear. It is definitely recognised that Lou is holding in her sensory overloads all day as she wants to comply and that’s why we see such as escalation in her behaviour once she reaches home, in a place where she feels comfortable to do so. This doesn’t solve the bruises I receive during a meltdown, but if activities are put into place throughout the day, it should hopefully help to improve the situation at home – fingers crossed!

We’re getting there a bit more now, amazing things happen once people start to listen, understand and believe! A bit more light at the end of this tunnel!

Thanks for reading – I can’t praise my family and friends enough for their help and understanding. 🙂

 

Finally!!!!! 

Just had to share a quick post to share about the phone call I had this morning! 

How ironic that 5 minutes before the call I’d said to my mum: 

“We’ve been waiting to see Occupational Therapy now for a year, no appointment through yet.” 

And a few minutes later I get the call to say Lou will see a Paediatric Occupational Therapist on Friday 9th September! I’m so happy I could cry! We’ve waiting a year for this help and there are not many Paediatric Occupational Therapists in our county. 

I’m hoping the 9th of September brings some well sort after advice and practical activities to help ease some of Lou’s sensory sensitivities that cause the frequent meltdowns, anger and frustration. This couldn’t have come at a better time as we’re currently having a bad day of demands, shouting and hitting me – now, finally we can get the help we’ve been longing for.

This appointment comes only 3 days before we have a multi – agency at Lou’s new school so hoping everyone will work together to ensure that she gets the help and support she needs. 

I’ll will report back on how this appointment goes ! 

Thanks for reading 🙂