Would any of you be so kind as to help me with an essay? I need 'experiences' of being a parent to a SN child

[littleducks]

Hi, I am a regular MNer but do not normally use this section. As part of my access course i need to write an essay with the title:

Describe and evaluate the possible implications for an indivual with a learning disability, their family and soceity.

I was hoping that some of you could provide an insight into the 'implications' in your own personal experience as part of the family

Thanks to anyone who would be happy to write a few lines, if you feel that it is personal and you would prefer not to I understand and respect that and hoipe I havent offended anyone by asking

Stolen lives What'gonna be different for him and you.
Stolen opportunities-I wanted to show my baby off to the world
Mental testing (Anastasia, 1988;Psychological Testing; P49 Ethical Issues)
What does it all mean? How do I cope? How do I work the system? How do I get the best for my child? How do I balance this with my own life, my partners life, their siblings life. What happens when school starts.Whats different? Bloody great bus backs up the street and lets everyone know my child is different. How does my child make friends? Will he be exploited/ridiculed. Just how many tests (both psychological and medical) will we have to attend. How will he cope with it. Year 6 it begins again, what school, how many more tests, appeals, requests for second opinions. How will I know when I am being fobbed off because the LEA are altering the way they offer special ed. How will my kid integrate and move on to post 16 provision, more meetings, how will they develop relationships. Seems like a form of apartheid, you are confined to your own. How much supervision will they need (the eternal child and eternal parent) What happens when I'm gone?

My experience at the moment involves feeling sad every day when I go to nursery when I see the contrast between other children's abilities and DD's, feeling conspicuous when out, having an older child in a buggy who makes a lot of noise, and getting judged by relatives as "spoiling" DD or "failing to discipline" her. Also being ignored by some parents at nursery once they realise DD is "different" (have never been invited to a party).

Then there is the worry that she has something progressive (thankfully now eased).

We get no sleep and we argue a lot about what DD needs as she can't tell us.

My back is absolutely wrecked from having to lift her lots, even now she can climb stairs she leans on me lots going up. She also wants to walk along walls and things like other kids but you have to take her whole weight.

I hope it gets easier though.

At one time I felt like I was not waving but drowning. Felt very isolated. Feel better these days but its been a bloody long time coming.

I don't ever want to return to the CDC (child development centre) either as it is akin to a prison camp inside. I've turned down their last two appts (the last one was the day before DS's annual review so I did not need that visit on top) and I honestly don't think there is anything more they can themselves do now, not that they've ever done an awful lot in terms of therapy and they totally forget the emotional high cost to the parents involved.

My relationship broke up when ds was 3 and I do blame the sleepness nights and severe exhaustion, the juggling of appointments, us disagreing on what was best for ds as he cannot talk.

I find it hard to accept that Im now a single parent to a severly disabled ds and i wont ever have the opportunity to have another child and have the 'normality' that I feel I have been robbed of.

Having a child with sn brings about alot of perspective into your life, the things that once mattered are now so trival. You re-assess your life,your hopes and dreams.I cant listen to friends moaning anymore- you learn who your true friends are.

You learn to not sweat the small stuff and not waste your energy on the things you cant change- well some of the time.

I'd also add that a huge issue for me/us as a family is feeling unable to relate to families of children without a disability in quite the same way. So yes, you gain a sense of proportion, but on the other hand, I often think to myself, 'if only we only had their issues to worry about'. And that can make me feel bitter and twisted at times.
HUGE financial issues because I just don't have the energy to pursue career opportunities and can't afford the kind of childcare that would let me get to the office on time.
Seeing DD struggle to express herself is sad and I worry about her future and whether DS will feel burdened with her care when he is older.

I agree with you on the feeling bitter and twisted Arabica and the sense of thinking about 'what if'.....I drive myself crazy with that alot of the time !

I have a recurring dream that we've taken the children for a waterpark-type holiday. We don't enjoy it much - is "okay" but too busy, noisy, too many people, tiring, just want to sit down and relax -. Suddenly notice an amazing place outside the glass external walls where we know we'd enjoy ourselves - quiet, no pressures, left alone. Then go round and round in circles trying to figure out how to get out of this place.
Kind of sums our life up. We do our best, but so many people have a claim on our time now and then criticise us constantly. Then there's the constant battle to get anything and then constant flow of money out for all those things you ought to be entitled to but can't get anyone to provide. All the physio etc is bloody hard work too.
Ds2 is a real character though who loves life and we love him to bits. Am constantly amazed that others can't see past the disability faster than they do (so many treat him like a baby) and then seem surprised when they see what we see. So maybe he's opened our eyes a little (hard to say when you're in the thick of it). Anyway I hope that is what he continues to teach us all as a family and teaches others who get to know him.
Am sure all the current problems will go on, but we will continue to fight his battles as long as we are able. Expect that rather than helping other dc with uni fees etc we will be helping ds2 to achieve some degree of independence. Hope the other two have seen enough by then to understand why.
Ds is 3 with diskinetc spastic quadriplegia.

atm DS seems only mildly affected (but he is only 6, )

1. uncertainty - assumptions about the future - independent life and work - no longer can be taken for granted

1. fear of society - how people can take advantage of the different or the vulnerable

1. distrust of professionals - so much is down to money and budgets, rather than my child's needs. involvement with the system can be more traumatising than your child's difficulties in the pre-school years

1. isolation - feelings of alienation from parents of NT children. making the "shallow" child oriented mummy friendships is virtually impossible.

1. horrendous pre-school years. with language/communication/behaviour related delays, the penny seems to drop with HVs/GPs and to a degree parents at 3. which leads on to you being stuck on massive waiting lists, and your child getting no input, as you see their peers progress in leaps and bounds. and then you have to apply to mainstream school, whilst worried sick about the above...

Pluses -

puts life into perspective.
you meet some fabulous SN parents.

emotional incontinence... deep joy at "modest" achievements and then crying at really inappropriate moments (cousins all singing carols and DD unable to join in, me in floods of tears- Merry Christmas everyone!)

and insufficiency- am i doing enough? am i talking to the right people? why cannot I not be a little more patient with her? is too much of my attention focused on DD1 and DD2 is getting short changed? why am i not ubersexual??

Has OP returned to this, or have we put down how we feel for nothing?

Maybe it isn't what she wanted.

Prolly she wanted details on how it is hard to watch a lickle child who can't walk grown up in a world where all around her care and are doing the best for her, not a screaming fest about the barbaric support services!

It may be that the OP has not come back to this at all but I'm glad she started it coz so much has resonated with me and it's made me cry and laugh at the same time..

When we got our daughters diagnosis of Tuberous Sclerosis I told a close friend and she said " oh god - there's going to be so much loss.. this is going to be what you're life is about now.."
I didn't like what she said at the time and was probably still in shock but she was right. It is our whole life. Our dd and her needs dominate our family life completely.

There is a lot of conflict with dh about what she needs/is feeling as she can't really tell us.. I worry about my ds (6 yrs) and how he is left to be so independent and self sufficient as his sisters needs always come first.. He gets upset about this and articulates it in a very painful way for me to hear..

I have not been able to think about returning to my career properly or to have another child.

I have definitely become bitter and twisted and have so much envy and anger towards others I see as having perfect kids. Or just seeing dd's peers sharing conversations with their parents is some days unbearable.. I constantly have to hide this and put the brave face on..

I have halved my social circle as I can't bear to be with people I can't be honest with sometimes at least..

There are so many emotions about the situation we find ourselves in but the day to day life is so draining and exhausting that there's never enough time to process/ work through how I feel.

Having to fight for every bit of support or help or education or therapy is exhausting and demoralising and humiliating too at times.

Physically my back is messed up due to lots of lifting and carrying.. and constantly having chronic tension in my shoulders.. I'm constantly monitoring the dd situation. Is she going to cry/ scream/ hit out/freak out/break something/ fall over/ eat something dangerous/destroy ds play/ run ( of a fashion!) away.. constant crisis management makes one very stressed!

Worse of all the sleep deprivation is inhumane. I often feel I cannot get through this without sleep.. I feel like crying when I hear her screaming in the night knowing that we'll be awake for hours..

Sleep deprivation makes me erratic/psychotic/ forgetful and at times makes me feel totally zombie-like so I can barely talk to people.. I'm always hungry when tired and crave sugar so I'm overweight and unhealthy.. Food often seems one of my main pleasures in life!

I remember a thread on here where the OP had asked how do you come to terms with your dc having sn and I remember a post that stayed with me.. You don't ever come to terms with it. But you come to terms with NEVER coming to terms with it.. That spoke to me and it sums up how I feel..

I try not to think too much about the future these days because it upsets and worries me too much.. I am beginning to realise that things won't necessarily get a whole lot better..

Having a bit of a maudlin few weeks.. Sorry that was so long but feel I do better after that rant -

Phew!

DJAngel, big hugs to you, your post really got to me.
I spoke to my dear sister the other day, I was feeling down, and I started telling her more or less what we are saying on this thread. She said to me that I have not accepted my son yet and that is a big mistake. I felt terrible, and this thread just makes me realise that unless you are going through this, you cannot possibly understand how it makes you feel.