Labelling your child as disabled

[szxmum]

Here is one for all you lovely people out there on a very hot and muggy Thursday

 

Do you label yourself or your child disabled?

 

Do you accept that you or your child are disabled?

 

I am having real problems with this.

 

Most of you regulars will know by now that my ds received a late dx of AS. I took him out of sixth form, applied for DLA for him and Carer's Allowance for me. I take full responsibility for my actions.

 

After lurching from crisis to crisis I felt we had reached a point where we could not continue in this fashion not when my son's mental health, physical well-being and life were at stake. The only "box" available in society for my son was incapacitated and disabled. The other "boxes" of job-seeker, student or worker were not and are not an option at this moment. If we had the money, I guess we could have just "dropped out" and been "dependant" on my husband. We haven't got the money.

 

So, I and my son are "dependant" on the state and my son is "disabled" in the eyes of the state. I know in my head that I have taken the right course of action. However, my mother has a real problem with mine and my ds current "labels" and her negative views are bringing me down, making me doubt my actions, making me feel guilty and ashamed. She makes me feel that I have been a "naughty girl" and have "been bad" and have done the wrong thing.

 

I want to get to the point where my feelings match my head - if that makes sense. I don't want to spend my days feeling guilty that my son and I are "dependants" and feeling that I need to defend my actions. I don't want to spend my life feeling guilty that I have labelled my son as disabled. I don't accept that he is disabled or the negative stereotypes that the word disabled can conjure up. I accept that he has Autism and that this has impacted on his ability to function in social environments.

 

Help me out here, how do I get to the point where I don't care what people think? How do I get to the point where I don't care if people point out that "There's nothing wrong with your son. He's clever and he looks perfectly healthy"? How do I deal with my mother who says it is not right that we are claiming benefits - the implication being that we are "sponging" off other people?

 

I want to get to the point where I can think "You think whatever the h*ll you like. You don't know our situation" and really, really feel it, inside

[chris54]

Both my wife and son come under the umbrella of being disabled, both from a benefits point of view and to access the very scares available resources out there.

If we had not relied on benefits over the years I don't know how we would have survived. I do not feel in anyway the slightest bit guilty about that.

 

I am selective about who I tell about what benefits we get. We would never tell my mother in law, she would have the same reaction as you mother. My mum knows some but because of the onset of dementia has not much understanding of what it all means. Others know we get benefits but not what or how much.

 

I don't really think of my son and wife as being disabled but have to bear in mind that the state does.

 

Don't feel guilty about claiming whats yours. As far as dealing with your mother is concerned as, much as it goes against my principals, I think a few white lies might be in order. And be economical with the truth.

 

On a foot note. When out MP and others in authority seem to be out to grab every penny they are entitled to why shouldn't we.

[Tally]

I recently started claiming DLA for myself. I have another medical condition as well as AS. Initially it felt wrong to claim it, because how can I be disabled if I can hold down a full time job? The money enabled me to go part time, and then I realised I hadn't really been coping at all.

 

My parents are aware I receive DLA. They seem positive about it to me, but my dad has made some very negative comments in the past about disability benefits, so I don't know how they really feel about it.

 

Apart from my family, I have only ever discussed it with people whose views don't really matter. They have all reacted badly, and so I would generally not tell anyone about it any more.

[caz2007]

DLA is there to help with transport and getting around, and caree or what every it is i maybe some kind of quitement to help you use a computer, just anything you need to make your life easy! i had DLA sence i was i thik about 8, but only had it in my name for about 1year now, i oftern have by things like "eg so i can tell the time "a talking watch"

 

if you now your son disabled and you have prefor for that, you can show them yes he has a disabllity and need help,

 

take care caz

 

 

[bid]

It is well-documanted that parents of children with special needs go through a grieving process (denial, anger, depression, acceptance). I read that unlike the grieving process that is worked through when someone dies where the final stage is moving on after acceptance, we parents move between the other stages depending on what is happening with our children. It went on to say that we never 'move on' but we do eventually spend the majority of our time in the 'acceptance' phase.

 

You have had a very recent, late dx for your son. You will be going through all these emotions and stages associated with the grieving process. Part of that will be accepting 'who' your son is now, and indeed 'who' you are too. My son was first diagnosed with special needs at 5...but I only stopped feeling a fraud for describing him like that when he went to a residential special school at 15!

 

My son will be 20 this month. Up to about the age of 17-ish he was definitely disabled by his conditions. By the time his DLA was due for renewal at 18 we both agreed that he no longer fitted the criteria, and now I wouldn't describe him as 'disabled'. I think that at times he can still be disabled by his mental health problems, but no, he is not disabled anymore as he has made huge progress.

 

As for myself, I have always muddled through so again, I would never describe myself as disabled...although I had to fill in the annual personnel data sheet for work, and I did tick the box for a disability and specified AS.

 

I think there can be a difference between having a disability and being disabled by a condition.

 

Bid

 

[Esty]

I totally understand where you are coming from. Two years ago I was a teacher with 9 years experience, a lovely husband and two sons, one of whom presented us with various problems from being what we called 'highly strung' to all out school refusal, violent temper tantrums (as we thought) and a complete lack of feeling towards anyone.

 

Today, I am officially a 'carer' of my 'disabled' 12 year old who has just been diagnosed with Pervasive Developmental Disorder and has his tests for Asperger's next week. I am completely dependent on my husband who is now the sole bread winner, so I claim DLA and CA.

 

Here's how I came to terms with claiming the money

 

(1) I have been paying my taxes all my working life and so have my parents and husband. As my parents put it, they would rather I was claiming this money than people who are just too lazy to get off their arses.

(2) My son has been school refusing on and off for 2 years, so hasn't had any formal education. We are desperately trying to get home tutors for him - if we can;t get them through the LEA, then we'll go private - all costs money we haven't got. Days out to educate him cost money, as does his complicated reward system which we need to keep his behaviour level. I need my car to drive him to appointments, back and to to school when he does go (he goes in/ comes home at a different time to his brother.)

(3) If the gov weren't giving me this money to look after him, they would probably be paying for a residential special school.

(4) We are on a waiting list to see a psychologist through CAMHS - it is going to take another 11 months for us to get to the top of this list. Ed Welfare are breathing down our necks as we have yet to 'prove' there is anything wrong with our son. On Monday we paid a private Ed.Psych over 800 pounds to assess him as we just can't wait another year to start to help our son. Next week she'll need another 800 to finish the assessment and write the report. She is fabulous, and worth every penny but I have paid my NI contributions for many years so why should I have to pay to get my son tested?? HIs DLA is paying for this.

(5) No-one else can understand my son like I can, not even his Dad. I can see a high or meltdown coming a mile off and nip it in the bud. My son hasn't attacked us for months because I am here to look after him and make him safe. If anything, Carer's Allowance is a pittance for the job we do as mothers. I was earning more in 2days as a teacher than I do in a month through CA.

 

BTW Totally agree with bid's insight about the denial/ grieving/ acceptance etc. I haven't heard that before and it's so true.

If anyone says anything to me (which they haven't, to my face) I would give them a lengthy list of all the things we have tried to do to make my son go to school, what I have to do in a day and also highlight the problems of hidden disabilities. I bet many of those people who are working don't do half in day as we have to do.

 

It IS Right that you are claiming benefits - if it wasn't , they wouldn't give it to you. You have earned it. You have paid for it. I have no problem referring to my son as disabled in an official capacity although I refer to it as ''difficulties' or 'challenges' in front of him. However if calling him disabled is what the government prefer, then this is what we do - their problem, not ours. It's just a word, albeit one with many connotations.

 

Perhaps your Mum is going through her own 'grieving' process as her grandson is not going to do all the things she had dreamed for him? Perhaps she is bothered by the 'stigma' she associates with benefits (again, her problem, not yours)My Mum is very supportive but she still tries to talk about the difficulties he will have with relationships in future etc and I just can't do that right now - I have enough coping with getting him educated and feeling safe and stable. You perhaps need to tell her that 'it is what it is, we would all like to change it, but we can't, and saying negative things doesn't help anyone.' Your trump card (though it would be harsh if it ever got to this) is that you either do this and have a functioning happy son who is alive or you keep the family pride at what price??? You can live with this situation because the alternative isn't an option. It doesn't change who you are, or who your son is, but it does make life a little easier. You don't need the stress of money worries on top of everything else because there's only so much you can cope with and you need to look after yourself.

Hope this helps <'>

 

 

[Sally44]

I agree to what bid said about the grieving process. However I have found that in 'our' situation with a child with an ASD you don't come to a point where it is resolved. I find it like a merry-go-round where I can be really down and low about some aspect - usually whatever difficulty or behaviour is present at that particular time, and the implications it has for his/our future. Then I have other times when everything is ticking along nicely and I feel okay about everything.

Like others I have never mentioned about benefits to anyone. People do have different options about this. I have an older sister with learning disabilities and my parents never claimed anything as they felt she was their responsibility. It was only in her 40's that I pushed my parents to involve Social Services so that my sister could have an opportunity to attempt to live independently, which she achieved. And I feel that my parents slogged their guts out, both working, sometimes with more than one job, to achieve what? They were never at home, and we never did things as a family that we were entitled to do and could have achieved if my parents had obtained the benefits they were entitled to. My sister probably missed out on therapies and clubs etc that she could have gone to and improved her skills. But I never have that discussion with my mum, and that is also why they have no idea about benefits my son receives or I receive.

Regarding being labelled 'disabled'. Yes I strugged with that for a long time and felt very guilty about it. I felt that my own son should be the one to choose what 'name', if any, he wanted to explain his difficulties and his strengths. But we don't have that option do we? There is no other box to tick. And the diagnosis is called a 'disorder' which means it is for life. And the difficulties which form the disorder have to be significant enough to be causing difficulties in the areas listed in the diagnostic criteria to even get a diagnosis in the first place.

So no, I don't feel guilty about the benefits side. My only concern is how do we present 'autism' to my son. I talk about it in a factual way that he has difficulties with some things that other children do not have, and that he has strengths that other children do not have. I don't want him to feel disabled in a way that he feels limits him. He is no more limited than any of us are with our own strengths and weaknesses if he has been taught coping strategies and has enough insight into his own difficiulties.

How the outside world views him is also strange because to those professionals 'in the know about ASDs' he probably is seen as disabled in some ways and very able in others. To stranagers on the street he does not look disabled at all and will be judged according to his behavour, which usually will not be recognised or understood for what it is. Prior to my own son getting a diagnosis I too would not look at a child behaving 'inappropriately' and wonder if they had a disorder. I would have put it down to sheer naughtiness and bad parenting.

It might be better to stop giving so much information to your mother. By giving her that information you are giving her the right to make her own opinion on it and comment on it to you. As she knows what you have told her so far you may need to tell her next time she raises the subject that this is not something up for discussion.

And you also need to be claiming these benefits and filling in these forms so that you are 'in the system'. Otherwise in XXX years time when you approach Social Services or another provider of supports or resources you may find you are not eligible because you do not receive certain benefits.

So you just need to be more confident in your own decisions. If at any time your child did improve by such a dramatic degree that he was no longer eligible for these benefits he would lose them immediately.

And there will be days when everything is going so well that you think 'there isn't much to worry about for their future'. Then on other days when everything is stressing him out and he is overloaded and having a meltdown in the middle of the supermarket you will see how very real the difficulties are.

Nowadays nearly everyone is on a benefit anyway. Since wages no longer are high enough to support a family, even if both parents are working, a vast percentage of the population has to claim Working Tax Credit or Child Tax Credit. So most of the people you meet in your day to day life will be on these types of benefits anyway. That is how life is now. It didn't used to be like that (probably in your mothers time?), when one mans wage could support his wife and family. Those days no longer exist.

[call me jaded]

I really am way past caring on this

 

He is severely disabled, I am his main carer. It's handy shorthand for the powers that be. The social model of disability is good at helping you get a grip of the issues.

[Esty]

Sally44 is right when she says it's often on the good days that we doubt they are 'disabled.' My son has days when he is co-operative and generous and seems thoughtful - on these days if somebody assessed him he would seem ok. However I would invite them to come when he has had a meltdown just because his brother made a chance remark, or he insists I said something or made a promise when I didn't, or is crying because he thinks his brother had longer on the Xbox than he did, or he can't get in the car because 'it smells funny'.......you know the list goes on and on

[pearl]

I want to get to the point where I can think "You think whatever the h*ll you like. You don't know our situation" and really, really feel it, inside

 

Just one word: Time.

 

All this is very new to you, cut yourself some slack <'>

 

15 years down the line, I'm still getting there.

 

[Mum of 3]

I look at my son, struggling to understand how other children are forming their friendships, and why he's always standing on the outside...I watch him building up his excitement for any activity we take him on, then totally spoiling it because he can't handle the strength of his emotions when he gets there...I watch the other mothers walking along the pavement chatting, holding their toddler's hands, whilst I have to hold 3 hands-both my toddlers' and my school-age boy's, because if I don't, I can't be sure of what he'll do...I hear about him not being able to take part in all the activities which, for me, made school worth going to-singing practice, dance, drama, theatre groups...I see him totally failing to register when he's made someone hurt, or happy, so that everyone else's emotions and reactions come like a bolt out of the blue for him...I see him squirming when asked to read, or write, or draw, because he thinks he has to be 'perfect', and he knows he's not.

 

He is not 'enabled' by these things, they 'dis-able' him. And me. And his two brothers, his father, grandmother, cousins, aunties...

 

I came home today to find a brown envelope on the mat, containing the letter I've been waiting for. G's been awarded DLA, at the middle rate for care. I've been waiting for this 'good news' for weeks, but when it came, I felt just like you, szxmum, I just felt depressed. Here was the 'proof' that G is, in fact, 'disabled'. But do you know what? I'm going to use the money to pay for a weekly cleaner and ironer, so I'm free to devote more time to G, and if there's anything left over, I'm going to save it up for a massage or manicure, so my batteries stay charged for the trials that lie ahead. And I'm not going to worry about it or wonder what anyone else might think.

 

Those who matter don't mind, and those who mind don't matter.

<'>

[szxmum]

Thank you to everyone who has taken the time to reply to my post <'>

 

Bid - I'd never have thought of this as a bereavement but it makes a lot of sense, thank you.

 

 

The social model of disability is good at helping you get a grip of the issues.

 

Thank you Jaded, you will never know how much your post has helped me - I owe you one <'> I have never come across this before. My mother, my dh and me (to a lesser extent) were completely stuck in the medical model of disability.

 

I can now say with complete confidence and belief that my son is disabled and the actions I am taking are enabling him and more importantly, I will work towards passing that advocacy over to him . Thank you, thank you, thank you

[call me jaded]

 

A journey of a 1,000 miles begins with a single step.

- Confucius

[bid]

This is an interesting explanation of the social model of disability:

 

http://www.redcross.org.uk/standard.asp?id=58926

 

And this is an interesting argument against it!

 

http://www.leeds.ac.uk/disability-studies/...0disability.pdf

 

Bid

Edited July 2, 2009 by bid

[MelowMeldrew]

Social and medical modeling/engineering is not much help, its politics mostly. NONE of us here would go much with disability but for the fact we would get no help unless we agree to the label. ergo society has deemed the disablement regardless, because of their own perceptions of 'normal'. Mainly there are major divisions in perceptions via acquirement, and born with, issues. The disability sector endlessly debates the social model, and has plenty of opposition to it. Because born with area, uses that social model as a basis for a blame culture, "YOU disable ME" and genetics debates etc who want their deafness, blindness, paralysis etc preserved as a right, while those who acquire such issues, want the cures. There can be little love lost between the two ! My child is autistic, HE doesn't perceive himself as disabled,so I have to go with that, there is no point me insisting he is, his perception is real to him, his life is normal to him....so what is to be gained by putting doubt there ?

[call me jaded]

Actually, as a fit and able prime carer, am more 'disabled' than my DS. My life is limited by his needs, but his needs are met and he lives life as he wants to (self-directed). Don't think many disabled people see it like that, though.

 

 

[sesley]

I think autism is a form of disability,its what is known as a hidden disabilty,one that needs a wheel chair or guide dog or hearing aids its a disability in that the people affected find coping with day to day life a challenge and some find they just can't overcome some challenges and need assistance for things like dressing,washing,eating and travel,because they can't cope with these things alone,although they maybe extremely intelligent the executive functions we all have that allow are selves to not be late for school,work .or react to physical pain,like tummy ache because he refuses to use school toilets so holds on until i take him home,and casues himself pain and discomfort. So i say it is a disability a disabilty to function in neurotypical life without help and assisitance.

Edited July 3, 2009 by sesley

[Canopus]

Attitudes of parents towards disability and how disabled is defined varies from person to person. When I was in Y4, an LEA specialist was concerned at my clumsiness and ineptness at PE lessons, but was particularly moved when he read that I couldn't ride a bike and that my handwriting was a scrawl. His only explanation was that I was disabled and should receive disability treatment. A letter was sent to my parents who were deeply offended and upset that an official from the LEA had the audacity to think I was disabled. My parents at the time adhered to a traditional model of disability which excluded any traits I had, so they flatly refused to believe I was disabled in any way.

[MelowMeldrew]

It's the stigma. People not accepting others are different. These things force parents to accept that perception or they get stigmas too. Our lives may not be easy in providing the care we do, those we care for do not find it easy to conform to what others do, so disability seems pretty global to me, its perceptions not a lot else. We are ALL disabled the difference being only, degree, as such what is the point, using the label to make things harder ? This re-inforced the negative peception of 'disability', ditch the term, ditch the negativity, not what they cannot do, but what they can. My son has a lot of love in him, that justifies everything to me. In that respect we are all the same, there are things I cannot do, things you cannot, things you child cannot, equate it, NOT compare it.

[call me jaded]

Well I wouldn't say we are all disabled as I think of the word. No amount of accommodation to the environment or change in attitude will make my son be able to do certain things that my youngest daughter (now 5) accomplishes with ease. The general public are in the main uninformed but not unwilling to accommodate us. The more positively I project the easier it is.

[MelowMeldrew]

I'm pessimistic, I do not believe they ever will accept people who are different. Lip-service I can get anywhere, put the chips down, see them vanish usually. When extended family will not even accept things, then it can be uphill to make strangers aware. We can only push for laws to force the SYSTEM to accommodate our children, there is not a law that can be made to force joe public, we'd get more opposition trying......