The social worker visit

Published February 18, 2012 by swanfreddie

On Thursday we had 2 social workers come to the house to do Freddies initial assessment. I won’t go into too much detail about how it went, simply because it’s to complicated to explain & i don’t really know myself! Our main reason for ringing social services for the child in need assessment was because having a child like Freddie is damn hard work!
We spent an hour discussing Freddies needs, his lack of a diagnosis, his medication, his doctors & therapists & how it all affects our family. We were really trying to push for some form of respite. I’m tired, my partners tired & Evie needs some mummy & daddy time. Every single part of me feels guilty for admitting that i need a break but i do & if i don’t get it then i will eventually just burn out. The Social workers didn’t seem overly bothered about offering respite, despite the fact they said he clearly has very complex needs & they could understand how it must really affect us. Anyway they are ringing back next week so we should know more about it then.

Once they left we then had a physio session. Our physio is great & seems to care alot about Freddie. We spoke to her about the assessment & i did end up pouring my heart out to her a bit! I could open up to her so much more than i could the social workers. She put me at ease whereas having two social workers perched on the end of my couch taking notes on everything i was saying was very daunting. I explained to her how as a family we REALLY are struggling. Freddie takes over our whole life. People may think that is an exaggeration but he really does.
When i originally thought about looking into respite i kept trying to justify my need for it by saying it was just for Evies sake but when speaking to the physio i found myself admitting that actually i need a rest. I need to sit down & relax, even just some time to do some housework would be good! I found myself saying that Freddie is beginning to become a bit of a burden on us. I feel generally awful for feeling this but it may show how much i need a break. I told her how guilty i feel when i don’t do enough of his therapy with him & that i worry i make his problems worse by not doing enough with him.
She was so understanding & is going to speak to the social workers for us. She is also going to get our SALT & OT together & discuss Freddies needs & see what is the most important thing we need to focus on with Freddie & the rest of his therapy can be put on hold for a few weeks. Not sure how i feel about this. I feel a bit like i’m letting him down. If hes having less physio or seeing less of the occ therapist am i stopping him from progessing? In all honesty progress is that slow that i’m not even really sure it will make much difference.
I just want to stop feeling guilty all the time & worrying that his lack of progression is my fault.

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10 comments on “The social worker visit

  • Chick you are doing amazing with the fredster.
    I know exactly where you are coming from needing a break. Keep pushing and get as many people on your side as possible.
    We often take a few weeks off physio etc when there is other stuff going on. And remember Freddie is making progress. Our swans just do it their own pace.
    Much love xxxx

  • I know you don’t know me and I keep leaving messages on your blog, but once again your words describe our life so exactly!
    You are so strong for saying all of those things! I feel it to and tell very few the truth of how I feel. You are an inspiration to me.
    Your family needs this help and you are being the BEST momma by making sure it happens. Just this week I was so cOnflicted with if am I am doing enough because sometimes, most of the time, I am so burnt out I can’t do a thing. I feel lazy and guilty but have such a young. Hold with such complex issues is amazingly difficult. My heart is with you. And thank you for writing his post, I now know I’m not the only one. Take care, kerri

  • Everyone needs a break, Freddie included. A little holiday from the onslaught of therapies will do you both good. I also feel torn between the desire to be constantly doing things to help my son improve himself and wanting to be able to dedicate more time to my older daughter. It’s a difficult balance.
    Funny how physios are often the ones we share our inner thoughts with. Ours also told me last week that I must find time for myself, if I burn out then I’m no good to either of my children.
    I hope that social services are able to provide you with the support you need.

  • You sound so much like me!! the guilt is overwhelming sometimes isn’t it? Our son is at a special school which is outstanding so I know he gets what he needs but the weekends are hard sometimes… and we get respite!!! One day, when I’m feeling up to it I’ll blog too.

    My son left the early years physio 5 years ago and we’re still friends!!

    Jo

  • Hi I was desp looking to see if I could give my daughter Pia diarolyte via gastrostmy tube as she is epileptic & I came across your site. My child is 3 years old and has very similar problems like Freddie we do not have a diagnosis either and now are going down the genetics route which is very slow process. All your frustrations and feelings made me feel that I’m not alone and I have similar struggles on a daily basis … I would like to talk more but Pia is crying we have jus got home from hospital after being admitted with severe seizures and some viral infection basically the doctors don’t know… Will talk again soon thanks dawn 🙂

    • Hi Dawn, sorry to hear Pia has been in hospital with severe seizures, hope she is doing a little better now. There is a group for children with undiagnosed conditions called Swan (syndrome without a name) i’m not sure if you have heard of them but they are amazing, They have a fabulous facebook group which is full of other parents in our situation. They also have a website http://www.undiagnosed.org.uk/ which may be worth checking out. 🙂

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