Sorry

[vixen1]

Hi all,

This is going to be really long so no need to read or reply, I just need to get this down...

Background: Owen has issues for which he sees a Neurodisability Specialist every 5 months. He also has speech therapy and occupational therapy. He wears Peidro boots for low muscle tone.

I've always underplayed how badly I cope. I'm scared they'll cite my PND and get social services involved. The trouble is I think that all of this has actually caused my PND (for which I'm now unmedicated)

This is a typical afternoon (not even a whole day!). To summarise, in the space of 4 hours my 2.5 yr old DS cried and demanded my attention over 20 times.

1450 - Arrived home from childminder's.

1516 - O throws toy in frustration.

1517 - O throws toy car which hits his twin brother, E. I smack his hand (because he doesn't understand when I'm cross and this is the only thing that upsets him) and give him Time Out.

1518 - Both boys cry loudly.

1523 - O cries and says he wants an apple. Apple given which he eats.

1525 - O cries out in frustration because he can't get on the sofa properly.

1527 - I put Peppa Pig on so I can get on. During this time O flees from the room crying on 3 separate occasions because he is scared of something on the programme. He's not making it up for attention. a) he doesn't get any and b) he's always genuinely scared of the same bit.

1600 - We then play a game with alphabet flash cards. I'm pleasantly surprised by his ability to recall letters which we haven't seen in a very long time.

1645 - O finds a small toy car which does flips. I wind it for him 15+ times. He accepts it when I say last time without fuss. He then asks to have part of the mechanism removed and becomes upset when I won't.

1710 - Fish pie given for dinner. O does relatively well (for him) eating just under a quarter. He gags so badly on his last mouthful that I don't push it. Yoghurt for pudding.

1722 - O starts crying because of dispute with E.

1724 - Eventually comes and tells me E has knocked his bricks down.

1731 - O accidentally knocks his tunnel then has meltdown. Destroys remains of tunnel and throws bricks. He doesn't have the patience to rebuild so I help him.

1735 - Accidentally knocks it again. Same meltdown. I rebuild tower.

1736 - Accidentally knocks it for a third time. Meltdown again so I try diversion tactics with no luck.

1738 - O asks for apple but we have none left. He screams and cries saying "I want apple".

1745 - Still crying.

1750 - Still crying.

1756 - O throws car at E so Time Out given in safe place to calm down.

1759 - O stops crying and is diverted by playing with pens and paper.

1800 - Plays nicely on "stepping stones".

1801 - He falls off stepping stone and wails, clearly looking to me for attention. I say "No thank you Owen, you're fine" and he stops.

1803 - O comes to me half crying because he wants a sticker on his car and it doesn't have enought "stick" left. I press it on for him.

1806 - O starts crying and saying "I can't do it" I ask him what's wrong and he tries to tell me but I can't understand because he's crying.

1812 - O asks for me to stick his sticker on the arm of his digger. It falls off and he cries. I ask him to find it but he can't so I retrieve it for him and stick it back on.

1814 - Sticker falls off and he cries again. I tell him to put it back on but he doesn't press hard enough. Cries again. I do it for him and show him how.

1815 - Sticker falls again and he cries again, throwing himself on the floor. I ask him to bring me the digger. Then the sticker and I Blu-Tak it on.

1825 - Boys have milk and O counts to 20 while it's in the microwave.

1847 - O insists on watching an episode of Mr Tumble which scares him. I tell him we don't have it any more and he cries for a few minutes.

1945 - Owen is in his travel cot because he won't stay in his bed. He has been screaming and crying for 45 mins. I just heard a loud bang and went to investigate because he then started saying "I've hurt myself". I found that he had a lump and graze on his head. Since I've left him again all I can hear is intermittent banging and screams of "I've hurt myself". I'll have to go up now and put him back in his own bed - what else can I do?

This was actually a relatively easy afternoon...

I've decided to document it all as I'm fed up with the people thinking I'm exaggerating.

Sorry - just needed to offload...

:( Sounds like you're going though a really tough time. Keep ranting here.

BIG HUGS
Ive started keeping a diary, for help with dx and dla. Heart breaking. DD is terrified of lots of bits of fav tv, not good at conversation and increasingly angry/meltdowns. Hope your ok. xxx

Gosh, I really didn't expect any replies but thank you SO much. I keep crying this evening, it's ridiculous.

I know there are so many out there with many more difficulties than we have but I'm really struggling to get anyone to understand what we go through day to day.

The main reason for the diary is to see if there are any triggers for his meltdowns eg tiredness or hunger but you're right - it might be useful for DLA eventually too.

Thank you. Really xxx

Woolytree - How old is your DD? Does she have a diagnosis yet?

I just re-read my diary to summerise DDs issues ready for assesment. Hard reading. Im sure my DD is much easier to handle than lots of dcs on MN but still thats the life we lead. The diary really puts things in perspective but Im hoping it will also show posative progress. Chin up Vixen1. xxxx

She is 5 in oct, assesment at combined clinic next week, been waiting since christmas...no dx yet. School in sept....eeek!

vixen I thought my first post was a really big ask to someone here to read and said so. But I was overwhelmed by the lovely responses and have been since.

Knowing from the other boards the degrees of difficulty people here face it took me weeks to pluck up the courage.

But this is a safe place. Welcome

It's not a competition. Some children are more work than yours - some less. But so what? You can't trade kids...

As for what's causing the meltdowns - do you think he might have sensory processing disorder?

There really is heaps and heaps you can do. I've found out so much good advice here on this board.

These are the things I'm currently raving about which might help your boy:

• Omega Fish Oil
• Epsom Bath Salts
• A trampoline
• Auditory Integration Therapy
• Retained Reflexes Therapy
• Unconditional Parenting
• Cutting out Aspertamine

Now, I'm not suggesting you do these things - just giving you examples of things I have learnt from this board and found helpful. There's heaps more things which I haven't tried (yet) as well...

Woolytree - Ahh, bless her, you must be so anxious but excited... my nephew (who has Asperger's) is also starting school in Sept - such a big thing for the whole family...

MiladyDeSummer - Thank you, everyone's been such a fantastic help already

I feel so much calmer just having got it all off my chest. It also helps to clarify what things I need to speak to the OT about.

Whats Aspertamine?

Im logging off now, the wine has hit the spot an dh is due home. :)

Will check back in tomorrow. Night all.

IndigoBell - Thank you, yes I know it's not a competition but I just feel the need to make it known that I know how lucky I am just to have my boys (with or without issues). I feel slightly paranoid at the moment that the Health professionals involved think that I'm a drama queen so I guess I just feel the need to express my ability to keep things in perspective. That's a fantastic list, thank you. I'll research all of those things. We already have a trampoline which has helped SO much with DS's gross motor skills . Is aspartame just in sweets and "sugar free" things or is it found in other food items as well? Thanks for your help, it's much appreciated

Woolytree - I don't know how to spell it - but I mean that artifical sugar they put in 'no sugar added' foods like Robinsons squash and Fruit Shoot.

Vixen - I don't know what it's in besides Robinsons and Fruit Shoots. But I always avoid 'sugar free' anything. Always thought it was better to get fat than cancer anyway :) And kids needs sugar - they need the energy.

Totally agree Indigo.

Aspartame is banned in several countries for children.

My mother has been almost mainlining the stuff since she was diagnosed a diabetic and her memory and generally healthy neurological state has been galloping downhill ever since.

I don't let my DC eat there any more. It's in the jellies, the biscuits, the drinks...

I don't think I give them anything with aspartame but I need to research it some more. They had their first ever proper sweets at a party yesterday. I would rather they hadn't but I guess you can't protect them forever.

They don't really have squash either. I wonder if it might be in some kids' yoghurts... I'll have to check.

Definitely want to do the fish oils... how do you administer them? I can't get DS to take any vitmins, he likes the taste but can't cope with the chewiness...

You can get liquid supplements if memory serves, which can be added to drinks.

I'm quite excited about zinc for my non-eating DS aged 3 (autistic) as apparently it helps food taste better.

Aspartame is definitely in some types of yoghurt. Anything which says low-sugar.

Low-sugar has artificial sweeteners and "low-fat" is also full of them, or sugar to make up for the lack of taste.

These labels are why my Mum is wasting away. Nothing wrong with whole foods and they don't have to be weird. A baked potato and filling with salad?

Vixen ((hugs)) you are dealing with alot there. A diary is a really good idea for you - I must do that too.It would be good for spotting whether there is something that triggers and for how you can improve how you handle yourself. Please also get some help for yourself. No one will take your kids off you for admitting you are a little depressed. For all you are dealing with, it's to be expected, getting some support is a very good thing indeed. x

Vixen, it's frustrating, isn't it? No one can possibly understand unless they have to live it day in, day out.

Re: the aspartame, DS1 definitely does badly on most sweeteners, but we are trying to keep sugar to a minimum because he uses a steroid inhaler and is constantly battling oral thrush as a result - plus too much sugar makes him more hyper, too. Most Sainsburys own brand low sugar and sugar free drinks are sweetened with sucralose (Splenda) which doesn't have the same awful effect on his behaviour and breathing and tastes a heck of a lot nicer. They've got quite a good range of sugar free high juice squashes, now.

if you're thinking of dietary supplements, also consider magnesium and iodine. they can really affect mood.

Supplements are easy to administer. Grind up the tablet, add the powder to pancake mixture/gingerbread dough/the bread machine etc, or just squueze the fish oil out of the capsule into bread mix or chocolate-y cake mixture (with aspertamine instead of sugar of course mwa ha ha) and the child won't even notice :o

other things I am raving about atm:

• doing swops with other parent or anyone else possible so that the more difficult children in your life get at least 20-mins concentrated one-on-one with you a day on their agenda in a Greenspan Floortime-y sort of way
• meditation for the mother. ten mins a day. when I get into a rhythm of doing this, it really helps me.