Our sensory journey!

[Me, My Girls & I]

Thought I'd start a journal to keep track of everything! Bit of backstory: since she was a tiny baby, I've always said that something wasn't quite right, which might sound like a neurotic mummy, but I knew it in my gut! E has never been your "average" baby, she was born in 3 minutes at home (something after lots of reading I think may be related), at about 4 weeks the hv did some kind of test thing on her, can't remember the name, and was surprised by how alert she was! At about 4 months we were at the hosp as she had fluid in her inner ear which meant she'd gone temporarily deaf!

So leading up to now, my child is the one that NEVER sits still! She's the one that constantly has something in her mouth, the more inedible the better! The one that has to touch, lick or eat everything in sight. The one that doesn't seem to know how to walk, everything is done running, hopping or jumping! She's the one that can't sit next to you without either stroking you or you stroking her!

After being totally at a brick wall with it and exhausted, I've been pointed in a few directions an titch in particular has been an amazing help to me! I found this checklist http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html bar the ones that aren't age appropriate, E tick all bar 3 of the "items" for hyposensitive and sensory seeking! So the things I've been getting frustrated with, thinking she was doing them to wind me up, actually they're things she can't help til I read up on it, I've been guilty of trying to stop her doing these things, i.e stop licking mummy, we don't lick people! When really I should be finding another way for her to get the stimulation! But I suppose that's because we're constantly being told what they should and shouldn't do!

The support I've had from the health professionals is minimal, most recently I've been told to just get her a teether to stop her chewing her bed! They don't seem to take into account the bigger picture! Although also included in the bigger picture is that she's been assessed as being way ahead of her age for cognitive abilities, so they told me she's just a bright child with lots of energy! Not helpful when your child will jump down the stairs multiple times with no fear

So for now, my plan is to start working with her, rather than against her! Last night I trialed her in a dark room with Xmas lights and a bear hug, the difference was amazing! I've also realised I've been doing things without even knowing! If I need to talk to her and need her attention, I get her in a bear hug and rock whilst we're talking! I'm also going to start doing things before we go out to try and expend some of the energy, star jumps, spinning, anything!

It's her birthday next week so I'm also going to be buying her some sensory things to help her! Gosh thats ended up quite a ramble

 

[MrsW84]

I have been amazed how little support there is to sme parents from the NHS!
It just shows u now ur own child better than anyone and good on u for persevering sounds like ur doing an amazing job
X

 

[Hope81]

Nice to see how well you are doing an that you found some ways to help her.

I am afraid that she will not get a diagnosis quite soon though as she is very young and many doctors may dismiss her behavior as extreme toddler behavior or behavioral problem rather than a sensory disorder that's probably quite rare and the diagnostic criteria may not even be well established, never mind to find a doctor with experience on it.
I hope your gp will refer you to someone that can help you and secretly I hope that she is just a very smart kid that needs channelling of her energy but a sensory disorder sounds quite possible too after reading on that from your link.

I couldn't read the whole page but is there any specific help for kids with sensory disorders other than your fabulous ideas of helping her?

Keep doing what you are doing and one day, hopefully sooner than later, everything will click in place.

I hope you will get to the bottom of all that very soon.

 

[Me, My Girls & I]

Thanks Hun! I feel like I had a massive lightbulb moment with it all yesterday and it all seems to have clicked into place! Weve Been involved with the HVs for a while, but they've said that whilst her eating everything is unusual, she's just a high energy child! They have however admitted that as her mummy obviously I get te brunt of it and there's a lot to be said for mummy instincts! Although I do believe they are looking at me and saying, she's just another young mum who's not coping

Next step is to print off the checklist, tick off the relevant things and go to the docs and ask for a referral! I've always been wary of being too pushy with them (although I should have learnt from other past experiences), but now I need to stand up and shout for my baby!

 

[Me, My Girls & I]

Thanks hope! I do really hope that it will all turn out that she is just a bright child with energy, but it is looking like it's new than that! Titch has been amazing suggesting things, she really has! There's occupational therapies and things they can do as well! I know its probably going to be a very long road tho!

Currently sitting brushing her hair with a dolls comb and she's loving it!

 

[MrsR]

I hope you get some answers and help! I'm never pushy at the docs as we assume they know best but they can only go off how much we tell them and only see a snapshot of things so I'd really not hold back at all!
Good luck x

 

[Me, My Girls & I]

Yea I always hold back at the docs thinking they'll think I'm overreacting otherwise! But it is true that they just see a snapshot! Also hoping that when she starts nursery in Jan they'll be able to help too as it'll be someone independent from the family that will be able to see it too! And ATM I'm preempting things as I see it all constantly, so when she's away from me in a "grown up" environment things might come to light too!

 

[Hope81]

Can they even handle her at the nursery ???

 

[Me, My Girls & I]

We'll have to wait and see on that one the teacher has been warned and she's seen a lot of her, but I dint think she realises the extent of it! On the plus side tho, the school has an integrated special needs department so are very clued up on things and have a special sensory room etc! So it's the perfect place for her to go really, as there will always be help on hand iykwim? But you never know, when she gets there, the structure of the school day and the extra stimulation could be just what she needs! Or it could go the other way! Either way, I feel quite confident they they'll be able to give her the help she needs and also the support for me!

 

[Rowesb]

it is lovely to hear you so positive. I really hope you get somewhere at the Drs xx

 

[Sassyjane]

Hey sweet,

I work with children who are autistic and/or have sensory processing disorder, and alot of the things you have said do point to sensory processing!!!

I'll be following your journey with interest xx

 

[Me, My Girls & I]

Rowes, I actually do feel positive about it for the first time in ages! Like I've got a sense of control back! We've spent last night/this morning trying to find things that help her, from things I've read to things I've come up with from what she does usually!

We've had some success with deep breaths and blowing all the "fast" out, it gave her a bit of focus rather than just running around getting herself more worked up! She's been on my birthing ball rocking with me lay on top which she loved! And I've been swinging her around by her hands like a pendulum, which she couldn't get enough of, but my arms gave out her and K are currently playing cushion sandwiches! Made a bit of a game out of it by saying to them did they want me to lie on them harder or softer and taking turns! I had my full body weight on E ad she was still asking me to do it harder

Going to leave it at those few ideas for today so I don't overload her with things and we can see what works at what times! But hopefully they'll get us somewhere! I've actually just managed to get my living room hoovered which is a massive improvement already!

 

[Me, My Girls & I]

Today's going a lot easier! I don't know if it's psychological or if things are actually better, but either way I'm happy! She is currently sitting eating a paper aeroplane, but you can't have it all! In fact, she's not even sitting, she's dangling over the arm of the sofa gearin up to go and do some Avon deliveries, which I've not done with her for ages! She knows where we're going and we're going to do an activity of her choice first! Just hope it works!

 

[Rowesb]

it probably is a little mind over matter in that you now feel as though you are able to do something about it all and are back in control, I think many children would get a lot from your current plan of action, she can see that you are responsive to her need so she is able to respond to your needs if you get me.... hearing you like this has made me feel all warm and cosy

 

[Me, My Girls & I]

Yea I think it was a lot of mind over matter really! I noticed I was doing things differently, like we went to my mums this aft and she clung to me saying she wanted mummy and she didn't want me to sit down normally I'd sit down and tell her she could sit down and have a cuddle, but today I stood cuddling her and rocking like you would with a newborn and she calmed down quite quickly!

Todays issue I've come up against tho, is my parents! They're very old school and firm believers in children just needing discipline! Although they did say the other day they thought there was more to it! Anyway, when we arrived, E had a fairy wand with her which she was chewing, I took it off her as she started to poke me with it! Next thing I know, she's chewing the rubber handle on the dolls pram - the pram is one I got for Xmas when I was young and is still immaculate! My dad saw her and told her off saying she eas being really naughty etc! She stopped chewing the rubber and moved on to the metal bar below I wanted to scream at him that she wasn't being naughty, it's just the way her brain works! But I just disnt know how to say it! Same happened when they were playing a game and she was jumping near the dog (dog's 15 and deaf and blind, so likely to snap). I just don't know how to approach it with them without thinking I'm being ridiculous! I was thinking of showing them the checklist and letting them see for themselves!

She's actually come to terms with one technique really quickly! I've adapted some of what I've read online, so I'll ask her how her engine is at the moment! More often than not, her answer is "fast" accompanied by fast driving arms! So I ask her how we can slow it down, ATM her favourite way is to blow the fast out, so she basically huffs and puffs and gradually slows her arms! I think if anything it gives her a sense of focus, and she enjoys the blowing sensation!

So today's been a lot more positive! They're at fob's tonight, so we'll see what Sunday brings!

 

[Rowesb]

May be sit down with your parents without the kids to distract and show them the stuff and explain that while you appreciate their strategy this is how you need to deal with E Xxx

Sent from my GT-I9100 using Tapatalk 2

 

[Me, My Girls & I]

I never really get kid free time around them! Although I need to go down that way tomorrow anyway, so might pop in for a chat!

 

[Me, My Girls & I]

Quick update! Spoke to my parents and wish I hadn't had a really hard weekend with my own feelings, E actually wasn't too bad! I've incorporated more sensory things into our day, especially at times when I can see things getting fractious! Spoke to a friend who told me what someone said to me thus weekend was rubbish and I'm obviously very devoted to my kids and E gets a ridiculous amount of attention! (yes, someone actually said that!) but anyway, today's another day! I'm actually child free today, and my "relaxing" day consists of 3, possibly 4 appointments for work! And I've got to go shopping cos a certain little lady is 3 tomorrow obvs out of wrapping paper as usual! Can't wait to see her face tho! Got her a sand/water tray with a lid so it turns into s desk, rollerskates, an umbrella, memory cards, a words/letters game and Minnie mouse ludo! And was under budget too OH thinks I'm crackers with ludo and word things for a 3 year old it was either ludo or chess, til I realised I don't understand chess myself that's one for grandad! And I'm hoping the table will mean I can do things jn the kitchen without too much distraction!

 

[Rowesb]

cool, sounds a busy day ahead