Sally's World

Thank you for your e-mails and comments on the ‘be careful what you wish for blog.’ Mostly people were supportive of what I said, but one or two people either disagreed or misunderstood me. This is fine of course; I don’t expect everyone to agree with me, I just am giving my own opinion. In fact, I’d worry if everyone agreed; it’s certainly not what I’m used to indoors!



I would just like to clarify two things:

Firstly, I do not think that a child has to be a wheelchair user to qualify for any special needs services. Not at all, many of the special needs children I know are not wheelchair users. I am fully aware of the huge array of special needs that do not affect mobility. So I can assure you this is not what I meant at all. All families who have children with any kind of special needs are entitled to all the services available.

Secondly, no, I didn’t literally mean that any parent who claims to have a special needs child when they don’t deserves a disabled child. I also don’t think having a disabled child should have such negative connotations either; I believe we should be grateful for all our children and recognise their perfection regardless of special needs. And once again, it’s not about the parents it’s about the child. I merely meant that people should be grateful that they have healthy families and don’t have to worry about hospital appointments/physiotherapy/occupational therapy/speech therapy/feeding clinics/incontinence clinics/wheelchair clinics/child psychology/dieticians/adaptations/equipment and everything else that goes along with special needs. I think that many parents don’t understand the implications of special needs, and as rewarding as it is, it certainly turns your life upside down.

My point was, none of us, when we are pregnant sit there and pray for a disabled child, we may say we’d like a boy or a girl, but I’ve never heard anyone hope or wish for cerebral palsy or autism. The reality is we adore all our children regardless, but healthy, happy babies are what we wish for.



So, yes, all families need help, yes there may be many issues with pensions, benefits, housing and services in general. But it is an undeniable fact that not everyone is honest, and this has a big impact on the benefits and services that are available.

But I’m glad you asked… It is interesting to see how differently people feel,or what they get out of the blogs I write. and I will always clarify anything I have said.

So keep e-mailing and giving your comments,

Take care,

Sal xxx

Now, Deion is of an age where he might want some independence from me. As much as I hate to admit it, he is growing up. There are various clubs and activities for special needs children and children in wheelchairs within the borough. There are also some services that would make his life a little easier.

I decided to find out about this and spoke to the relevant department within Lewisham council. I had to write in and actually refer Deion as a disabled child within the borough; I then had to fill in several lengthy forms. I guess I just presumed that Deion was on the system…but it’s a different system.

Then, yesterday, I had to have a family support worker from disabled services come out to the house to meet Deion and interrogate...sorry...interview me (for two hours)to make sure I wasn’t telling fibs…I kid you not.

The guy was perfectly helpful; he was actually quite apologetic because it is very obvious that everything I said on the forms was correct. I did say that I felt that the system was slightly over the top, it all seemed a bit much just to find out about a few services that Deion should probably have been getting for years anyway.

I had also already provided a list of all the professionals involved in Deion’s care, from neurologists, to physios, to the GP…any one of them could have confirmed the facts.

He did explain though, that in cases like ours, it seems over the top, but there are so many people that abuse the system, it is necessary. I guess this is the problem. There are thousands of people out there claiming all sorts of services and benefits for children who are not actually disabled. He even quoted a few cases some statistics…it was quite scary.

This is where the problem lies; it is the people that abuse the system who make it hard for the families that really need the services. It is incredible to think that a parent would say their child is disabled when they are not, there are some that do it for attention, some that do it for significance, some do it for money, or to get something for free. Perhaps they feel that as the system is flawed in other areas, they make up for it this way. But it’s simply wrong.

So because of those people, there are kids missing out, and at the very least there are parents having to jump through hoops just to get the relevant information.

A certain saying springs to mind “be careful what you wish for.”

Now, if Deion’s lucky, within six weeks, they should write back to me and tell me if Deion qualifies for any disabled services…I won’t be holding my breath though!

Take care, have a great day

Sal xxx