One thing that I hear alot of carers of special needs children talk about is how much they have to fight to get their children what they need. I’ve heard some terrible stories of how hard carers have had to fight to get basic things for their children.
We have a bit of a fight on our hands at the minute. I’m finding it very draining & it’s taking up so much of my time trying to sort it.
I’ve spoken here a few months back about our new pushchair. Freddie was really struggling in his basic buggy & we were getting desperate for something with more support. The pushchair the wheelchair centre offered us was perfect, but within a week we started to notice that the frame wasn’t clicking into place properly & I think it was like this when we got it. I rang wheelchair services and they sent an engineer out to look at it. He seemed to think the pushchair had a twisted frame which was stopping one side of it from being secured into place. He arranged for it to be collected and be fixed. I asked if they would supply Freddie with a tempory pushchair while ours was gone so I could continue to safely and comfortably get Freddie around. Seemingly they only stock basic pushchairs so we were just left with Freddies old pushchair to use.
A week after our pushchair went I rang the wheelchair centre for an update. They said they were having problems sorting it because it was a brand new pushchair the manufacture wasn’t happy about it being returned to them. They said they would ring me back with an update. A few days later I had no call so I rang again. They said as yet they had no real news for me as they were still trying to sort it out with the manafacture. This continued for about 3 weeks, I ended up getting more and more stressed with them & was struggling more & more to transport Freddie. Eventually they told me it had been returned to the manufacturer to be looked at.
A few days later I got a phone call saying they could find nothing wrong with the pushchair and they weren’t even sure why it was there. I told them what the engineer had said about the twisted frame & they went to relook at it. Another week of me constantly pestering them past & finally they said they were redeliving it back to us and we agreed a date.
That date came & I promised my daughter as soon as the chair was delivered we would go to the park for a play. When the knock at the door came it didn’t go as expected. “I’ve come to collect your pushchair” he said! After 5 weeks and 3 days of not having Freddie’s pushchair I was FUMING that they had got everything mixed up & we were not going to be getting it back today. The poor man was as bewildered at me as to why he had been asked to collect instead of deliver. He assured me he would be back with our pushchair tomorrow. I was left to explain to Evie that we woudn’t be going to the park as the pushchair wasn’t coming today.
The next day the pushchair arrived but they had done nothing to it…it’s still broken! To say I was fuming doesn’t even cover it. I wanted to ring them & ask what on earth was going on but I knew if I spoke to anyone i’d just cry.
I’ve found the whole thing exhausting and draining. I shouldn’t have to fight this much to get my son the pushchair he needs. The fight is going to continue. The pushchair is being picked up again on Thursday to be looked at again. I want to ring them & demand they just replace it & I want to make a complain about it all. But right now I just don’t have the energy to do it. The whole thing has exhausted me.
I feel that everything is taken out of my hands. If I could go down to the shops & just buy Freddie a pushchair I would but we are not in that position.
Compared to the fights i’ve heard alot of other carers go through for their children this is minor. But it’s a fight that I shouldn’t have to do. My energy & attention should be going into helping Freddie not sorting things like this. We were lucky this time that we were just about able to carry on using our old pushchair, if this happens again in 6 months time I doubt we would and then what would we do? Be housebound for 5 weeks?
Being a carer really is a hard enough job without having added stress placed upon us. But I won’t give up on it, no matter how draining it is.