Sally's World

Some of you may remember that a couple of weeks ago I wrote a blog about how Deion is now at the age where he wants some independence from me. So I contacted Lewisham family and social services to see what was available for him in the way of clubs and activities.

I subsequently when through a three hour appointment which can be described as nothing less than an interrogation. And then we waited to hear.

I got a response on Friday. I had to leave it a couple of days before I wrote the blog, otherwise it certainly wouldn’t have been printable!!!

Apparently Deion is not entitled to any services what so ever. Amazing! The reason is that I am not a single parent and Deion’s dad has a job that pays more than their ‘cut off’ amount.

This made no sense to me, I rang up and questioned what they thought I had asked for. “Deion needs some independent activities,” I said, “I wasn’t asking for money or respite.” (Even though I was under the impression that respite was available for families like ours…no matter!)

So I was told that I have family and friends, so they can take care of Deion if I needed a break…I calmly explained that it wasn’t about me getting a break, the contrary, I am terrible at being away from my kids…but Deion needed some independence for his own growth and personal development.

So even better, they told me to pay for someone to take Deion on activities. After all, his dad works, we must have resources to pay someone.

Oh my god!

Again, its not that simple, we drive a huge bus with a wheelchair lift, only Dave and I are insured to drive it, and its not easy to find wheelchair accessible clubs and activities anyway.

I was offered no advice, except that I could research for clubs... there is a list on the government website, then pay someone to take Deion out, also I would need to hire a wheelchair accessible taxi to take them wherever they needed to go.

Isn’t it wonderful???

Since when were we penalised for being a two parent family? since when did having a job and not receiving benefits mean that our children are penalised?

Deion does attend clubs outside of school, and he is a member of a wheelchair basketball team, but the problem is I have to take him and stay with him and bring him home. He doesn’t want ‘mummy’ dropping him everywhere, he wants to feel like a big boy just like all his friends.

There are a few wheelchair accessible clubs, unfortunately Deion does not take precedence, there is a waiting list and children who need it more are always offered places first.

Okay, so I got angry then, I told them that ALL children need the same social skills, ALL children regardless of how many parents they have or what jobs those parents have need the same skills to develop into adulthood.

But still no-one listened.

And what hurts the most, is that in seventeen years of being a mother of special needs children, it’s the first time I have ever asked for anything for my kids….so isn’t it refreshing that I was basically told to ‘naff off’ and sort it out myself.

What a relief, after all, I would hate to have to change my low opinion of social services at this point!

So once again, Deion has to compromise, I have found some more clubs for him, even a couple where I can leave him with qualified staff. But I will have to drop him off and pick him up an hour or two later. Hardly big amount of independence for him is it??? And yes, I do have friends that would willingly look after Deion for me, but that’s not independence for him either. And like us, most of those family members and friends work and have families of their own also, and are surely entitled to free time themselves.

Social services obviously don’t realise what a big responsibility it is to look after a special needs child, most people we know do not have hoists fitted, changing beds and correct seating facilities for Deion, so it could only mean them travelling here. So its still not a break for Deion, being in his own home while someone looks after him…

Bloody ridiculous, but as usual, we will get on with it. I could just kick myself for even asking in the first place, I should have known better!

Have a great day

Sal xxx