Feeling pissed off

[debs40]

I'm still waiting to get a paed's appt for DS who is 6 and has sensory and other issues.

I've just chased with my GP today but I'm getting so cheesed off.

Every day seems to be a battle about food and clothes. Even though I try to let him stick to what he feels is 'safe', the list of things he will eat or where is getting smaller and smaller.

he has a wardrobe full of clothes he won't wear. Even stuff he used to wear, he now won't. I just find it depressing. I know it shouldn't matter but it does.

He lives of humous and breadsticks, crisps and pizza. Trying to get him to try or just taste anything else causes meltdown.

yesterday he constantly tantrumed about sharing (or rather not sharing) his toys. DS2 is three and is really great and sharing but DS1 just screams if something of his gets touched.

he was really bad yesterday because his brithday is approaching and a new toy arrived and he just wouldn't let DS2 near it. Even to the point of being physically aggressive. he also had a meltdown about stickers on lego not being 'straight'.

He won't go and see his schoolfriend for the morning because he'd have to go without me. We're sitting round the house.

He used to seem such a happy boy but is often so tearful and tantrummy. It really gets me down.

I wanted to go to an interview next week for a job in London which is an hour and a half train ride away. There's no way he'd go to a childminder after school.

All this and I don't even know whether there is something 'wrong'. Maybe it's just me - a bad tempered mum!

I feel for you! Half term is hard. How is he at school? Do school offer help?

Thanks. The school he was at in his reception year mentioned him chewing things and being very tactile - there was a very physical playground - but his new school haven't noticed anything. Just say they're enjoying his individuality! Which is good!

Anyway he was really bad after the Xmas holidays and wouldn't wear school shoes or shirt so I think they noticed it then but I've told them I'm waiting fir a referral and they've left it at that

Hi Debs. It might be worth seeing if you are able to do a self-referral to an Occupational Therapist. They are the 'experts' in sensory issues.
My dd sounds exactly like your ds. Her former school barely noticed any problems either.
I did a self-referral because of ridiculously long waiting lists. DD was also referred to CAMHS -where she saw a child psychologist- a SALT and a paediatrician.
I know how difficult it can be. DD also has a wardrobe of clothes she won't wear and has issues around food.
I think the part before diagnosis is the hardest -you don't really know what you are dealing with or how to help.

I can highly recommend the book 'The Out of Sync Child' by Carol Kranowitz. It explains sensory difficulties in depth, along with strategies to try.

Good luck

Thanks for that.

What do you do when they're refusing to go anywhere or do anything? I find it is all irritating me so much at the moment that I'm probably making the whole situation worse.

We've just made homemade lemonade which he was insistent we try and sell in the street after something he saw on 'Max and Ruby'! I persuaded him this was not such a good idea in the rain but he has made the whole process so stressful - messing around with the knife, drawing over furniture while we were squeezing lemons - it was not quite the experience I was aiming for!

Of course, as soon as you say 'stop that' he starts screaming - 'oh no, oh no mummy hates me....' blah blah

Tell me this is not how 6 year olds behave?!

Hi, he sounds very much like mine. I am sorry I have no advice except for you to know there is similar out there. I am also prisoner in my own home as son won't go out. His clothes list comprises of plain coloured jogging bottoms and plain jumpers, no buttons, zips, stripes or checks although he used to wear these. All mine will eat is beans. My son also used to be happy but is now sad and violent agressive outbursts. My son also doesn't bother with other children, doesn't play, share etc. My son is also very ridgid in routines and verges on being obssesive with this and others such as the liking things straight. My son has severe sensoty processing disorder affecting all areas- tactile, visual, auditory, olifactory, proprioception, vestibular etc He is also Down syndrome with a heart condition and severe learning disability. He is 8 year old functioning around 18 months. So although he may differ there the problems are very similar. We have OT input and help from the behaviour team. I have also read the out of sync child among others and the whole area is fascinating. Although we haven't found the right help for my son. Sorry for the ramble anyway. Take care.x

Oh,dev, I am so sorry you are finding things so hard. It can really get you down, I know.

Debs, I tend to leave dd with MIL (lives over the road) if she refuses to come places -it's just easier than the tears and meltdowns. If it's something she has to do eg visit to doctor, I try to prepare her well in advance, but to be honest she still usually objects.

She used to be okay in shops etc for short spells, but now she will beg me not to make her go.

Just like you, I find that most experiences which should be pleasurable often descend into stress, stress and more stress

Thank you both so much for posting. It really helps to let off steam to others who understand.

Dev - I am so sorry things are so tough for you. I hope you can get the help your son needs. It must be so exhausting for you. His sensory issues sound so similar

Sibling - thanks for posting too. Your dd sounds very much like mine. Trouble is dh works miles away and is out 12 hours a day and I have no one to help locally. He won't even go unattended and play wirth his school pals.

My sister is coming down for his birthday this weekend so I'm hoping this will give us a little break.

It has been such a crap day and ds said so when going to bed - he said he just wants to stay in the playroom and play star wars or 'guns' all day. I just can't do it - sorry!

I did manage to get him out to buy a star wars t-shirt though!

I find I have had to let go of the 'you should enjoy this' attitude. My HFA sons are older now so in a way it is easier to just buy the favourite familiar foods for each one. I see a difference in their confidence in me, they can trust me to generally work around their ways. I am a tiny bit more relaxed about their lack of wish to go anywhere unless it is for their own purposes. Though I do feel like I'm in prison at home.

I leap at the chance to go out on my own when my husband is in the house.

Every so often they will make a leap forward and do something I had not expected so soon. This morning my ds2 brushed his teeth without me asking him to several times and putting the paste and water on the brush and handing it to him at a non confrontational moment in our day. He also, I can't believe it, dressed without me even asking. He's been through a phase of not wanting to change out of a set of clothes for several days on end. So I had been muttering words like Borstal, boarding school, boot camp to him! He is home educated, but I am still human!

I recognise the extreme reactions to crossness from me. They both found it hard to get to sleep on Monday. I had been cross with them at 2pm and had made them come out in the car with me, just to get out of the house. Then they both woke up extra late because of that on Tuesday. All because of one strop from me. They just take it so hard and so personally. They can lose their appetites because of a row, or even feel ill So I have to be tolerant to a degree I find slightly unsettling, even though deep down I know it helps them to grow up happily.

So is "the curious case of the dog in the night time" something like reality at your house then? It gave me a view into a wierd world.