Focusing on what Freddie can’t do

Published November 11, 2011 by swanfreddie

So i’m sat here at 8.30 on a Friday night after a very busy day, made worse by my lovely 2 year old daughters constant tantrums, attempting to write Freddies request for a child in need assessment.

What can’t Freddie do….Would probably be easier for me if i could put what he can do. May sound like a negative thing to say but as i’m sat here listing all the things he can’t do i am starting to wonder what he actually does do with his day.

He likes to wiggle around alot – hes getting really fast now which makes getting dressed & doing tube feeds & meds very hard!

He likes to pull my hair

He likes to be sick all over himself – particularly when hes just had a bath & has nice clean clothes on

He likes to blow raspberries all day long – especially when i’m feeding him a puree so i end up covered in food & he ends up covered in his own spit

He likes to rock back & forth in his highchair as it makes a loud noise

He likes to cry everytime i take him shopping

He likes to touch plants

He likes someone to just sit with him & show him different toys even if he doesn’t quite understand what to do with them

He likes sitting in his big boy chair in the bath & splashing the water so much that my bathroom floor is like a river

He likes to have a big long afternoon nap all snuggled in his sleeping bag

He likes having tea parties with his big sister! ( I do lie, it was very forced upon him)

Freddies list of what he can do isn’t long. Its not what he should be doing. He should be running around with Evie causing all sorts of havoc but hes not & this is just the way it is. So this request for a child in need assessment is the next step for us i think. I’ve had some lovely people helping me with how to go about writing it. I can’t thank them enough for all the support they have given.

Earlier today it dawned on me slightly the impact Freddie has on our family time together. Evie was going out with her daddy for a few hours & as we were getting dressed i asked her where she was going. She said “on the train” then went on to ask ” are you coming too mummy?” & i tried to explain that i couldn’t come because i had to look after Freddie & she just said ” shall i look after Freddie too?”

I would love so much to take us all out on the train, a nice family day out . To show them both the trains & see them both really excited by it. But if we did attempt this we would have to take all Freddies medicines & food & tubing equipment, Freddie would just sit in his pushchair unaware of what was happening, then he would start crying to the point where he becomes inconsolable, so we would go home & then Evie misses out on the nice day she deserves. It’s just not worth the hassle & stress. Maybe getting this statement done will mean i get a short break from Freddie so i can have some quality time with Evie without it being overshadowed by Freddies needs. But would i just spend that time feeling incredibly guilty for leaving him out of family time & would i feel that  i’m saying my son is a burden to us?

All i do know is that i love him so much & his gorgeous smile is enough to brighten my down days.




One comment on “Focusing on what Freddie can’t do

  • another brilliant post hayley.
    Remember all parents need time out sometimes – just as all children need time away from their parents sometimes. short breaks aren’t about implying freddie is a burden (hence the move away from the use of the word ‘respite’) and with the right worker these will also be a fantastic experience for him too, another person to come and play and share in his amazing smile!

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