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

The tiredness as ds does not sleep .the finacial costs as nhs might provide something that sort of does the job but is not the best so having to self fund and chase up chairyy finding do means less money tome for doing anything elses.

For me boils down to lack of money. , lack of time to do the 10001 things that I need should do and the tiredness of it all

It means your whole family and every move you make is 'owned' by the Local Authority.

It means a life tied up in uwanted appointmentes and timeconsuming forms and paperwork. It means being bullied and beaten by the services how are supposed to help you, in order for them to try to convince you and themselves that you don't in fact need their help and are only being greedy.

You might be better off drafting a basic essay plan with the areas you want to cover, and then asking for specifics.
Different families face different challenges, for me it was ensuring that my able son had the reasonable accommodations made that he needed in order for him to access mainstream education. That meant teachers and schools prepared to listen, adapt and be consistent in their approach. Giving him the support he actually needed rather than a generic "This is what we d for ASD children'
Same with friendships, families, socialisation and the future. Every family is different, and sadly, the provision varies hugely depending on your location, and the parents' ability to be an advocate for their child.

It means everything in life is now ruled by SN. Can we.go to a certain place? Only if there is a certain thing, or isn't a certain thing.

Can we have days out? Only if SN are taken onto consideration. Can we go on holiday? Only if we can organise dietary issues, and ensure accommodation is totally safe.

Not to mention that we have moved house (across county and back again) twice in the last 2 years for dd1's education. For the lst year our lives have been dominated by preparing for a legal tribunal to ensure dd1 gets suitable.schooling.

For 6 months, I spent 4 hours a day taking dd1 to/from school. I also had to drag dd2 along on this too.

Dd2 has barely been to any baby/toddler groups. I didn't really ubersexual the time to.take her, and also dd1 was by that.time too old for them and behaving unacceptably around other peopl's babies. She is nearly three and a half, but doesn't attend pre.school as I cannot fit it into dd1's school run as yet.

I have had my home invaded by a stream of tutors to get dd1 the education and I prevention that should be provided by the state. Our lives are truly not our own.

Every single need your child has must be fought and argued over. Nothing is provided unless you fight.

Have absolutely no idea what I typed to get it autocorrected to "ubersexual"

I can only assume it is.meant to say "have" but baffled as to how I got that so wrong!

littleducks, you've opted into the sn boards. Why not have a wander around them and form your own opinions as to what the implications are?
And how varied and relentless the pressures on all of us involved?

Sorry bit that did make me laugh out loud

must get home internet sorted - my phone makes all sorts of nonsense out of what i type

Are you sure 'ubersexual' wasn't just one of your predictive text defaults due to frequent use of the term!?

Hahahaha, yes, use it all the time!

Seriously, only had phone a few weeks (partly got it due to internet issues) the autocorrect is usually very accurate, so god only knows what I typed!

I can't type properly because I'm too busy laughing at the ubersexual Silverfrog!

I think the way my family are affected has changed over the years tbh:

Baby years: Definitely the lack of sleep but way beyond the more typical sleep deprivation that you would usually experience with a baby.

Toddler years: The stage where you just know that something's not quite right but aren't sure what the problem is. For me this was the period where I was trying to get other people (professionals as well as family members) to see what I was seeing. It's fairly common to have family members who are in denial about any difficulties, even to the extent of saying that if there is a problem then it must be the fault of the parents. While all this is going on you are also dealing with the behaviour as well as trying to research what could be causing it.

Pre-school years: This was when mine got their dx and was a time of rushing round to lots of appointments with children who really didn't want to be there. It was also a time of trying to arrange help for each child during pre-school hours. Towards the end was the stress of finding a school and trying to arrange the transition process and make sure help would be available.

Primary school years: This is the period when the differences between your child and others become more obvious. It's hard to be surrounded by children who find day-to-day life so much easier than your own child does. This is also the time when you initially worry about your child getting the help they need in class. You also worry about things like friendships (especially when your child is one of those who is rarely invited to parties etc) and bullying. Each year when it comes to moving up to the next class you hope that they will have a teacher who 'gets' them.

Throughout all of this will be finance-related issues. Not only being able to afford equipment, specialist courses, the day-to-day extras like nappies etc but also the soul-destroying process of filling in forms for things like DLA.

This is all very general though so if you would like something more specific, ask away.

You kiss your life goodbye.

On the up side, you gain a great sense of proportion.

Toilet training: extremely stressful, specially since ds's school would not take him until he was toilet trained. It took us 10 months of constant washing.

Sleep; DH and I had not had a proper night's sleep in 4 years (ds is 5). Feeling constantly and permanently tired has become a way of life. Waking up between 4.30 and 5;30 everyday, weekends and holidays included is horrible

Socially; THere had been an impact on our social life, it is very difficult to take ds to people's homes if you cannot leave him alone for a minute, if we invite kids to come to the house then one of us needs to supervise constantly and stop ds from "grabbing, touching, annoying" them

Financially: Believe me, we would have a much healthier account balance had we not had to pay for therapies, books, dvds, anything that might help ds (don't regret a penny of it though)

Day to day life; I cannot take both my ds's on my own out to a park, because I could not keep an eye on ds1 and ds2 at the same time, he would disappear in a second. I cannot take both my sons to a pool on my own. I only recently have been able to take them for a short shopping trip. So we need to plan everything very carefully (very lucky to have a great dh)

I could go on......

at silverfrogs ubersex!!! Not sure where ubersex fits into special needs, I'm obviously missing out somewhere!!

Implications for individual: DD3 is now 16 years old. Always struggled through school which has left her with extremely low self esteem after feeling she is rubbish at everything all her life, but on the positive side she is the most determined stubborn teenager you have ever met.

For her family: huge financial implications. eg: We live on an island, but hospital appointments are on the mainland which costs us at least £30 a time. At one time we were doing this at least 3 times a month.
The whole families lives revolve around SN.
I have spent so much time on the phone fighting for what is needed. I am fed up of having to fight every step of the way.
On the positive side I have now 5 DCs who are caring and know how to be tolerant of people who others might consider to be "different" in some way.

Good luck with the essay.

How it effects our family.. We can't even spontainiously do the simplist of things.. Everything has to be planned . My other dc's have to be tollerant and a lot more understanding than their years.
As parents we are tired and worry all the time.. We don't get time off... Always on duty! We have to be prepared for life and we have to pull together to fight the fights.
We all have to remember to try and just be us.

Isolation for them, the family, minority in a society that is intolerant at times.

Implications for mum - was it my fault, what did I do wrong? grieving period which brings acceptance (at times to a greater or lesser degree). Awe at the "proud mummy moments" that only people on here really understand or close family/friends who are supportive.

Fear for the future.

Personal enrichment.

Children who embrace diversity.

Great summary here from r3dh3d:

You kiss your life goodbye.

On the up side, you gain a great sense of proportion

------

ref: the title of your essay contains the words, '...a learning disability'.

If I were you, I would start your essay by clarifying 'learning disability' because its meaning is broad and the ramifications wide; e.g. mild LDs might impact a young person's job opportunities and earning potential but my ds's SLDs impact his intellect and independence. He will always need 1-1 support so finding a job is not a prospect for him.

Implications of (S)LDs?

• big loss of freedom: so many everyday things have to be avoided because inclusion is simply not possible (e.g. it's not possible to take my ds to a public swimming pool), also not being able to go to ordinary places spontaneously (either because more than one adult is required for management purposes or because the environment is unsuitable

• lots of bureaucracy: endless forms to be completed, appointments to organise and attend, meetings to attend, school holidays to plan, etc

• you are at the mercy of the authorities for access to crucial services such as respite care, the right education, nappies, holiday schemes (although some areas do run private schemes), etc, and you will have to be persisent and tenacious to get what you need because absolutely nothing is offered

• what is going to happen at puberty? What is going to happen post 16yrs? Post 25yrs? My ds will always be vulnerable and require a high level of support - who will provide this when his parents are in their dotage?

As for the implications for society? Well rather than trotting out the obvious lines about how expensive providing for disability is, you could instead point out how many jobs are actually created and maintained by people such as my ds: special schools, O.Ts, SWs, Physios, SALTs, etc!

Good luck with your essay.

We haven't had a night out since DS1 was born. We've tried to have lunch together, but the past 2 days DH has taken off work so we can do this, one of the kids has been off school, poorly.

We have days when we feel something has been achieved if we've made it to bedtime without serious incident. Babies have "witching hours". My boys have witching days.

Forget going back to work. I spend my days filling in forms. Long forms. Plus making phone calls - not easy with 2 boys who constantly grab the phone and make so much noise - and there's always calls to make when the NHS nappies don't turn up yet again. Then there's the time spent scraping kids off the floor - at home and at school.

Oh, I really need more ubersex in my life

I should add that there are also positive implications for an individual with a learning disability, their family and society.

My ds has SLDs. However, he still learns - it just takes years not days, weeks or months. When we realise that our ds understands more about life or that he seems to understand slightly more speech, it's a wonderful reminder that he is still capable of making progress. As parents, we appreciate every step forward and it is gratifying for his teachers when they have a bit of success with something that my ds has been working on for a year or more at school.

It is exhausting. I have watched my friends grow with their children, who should be DD1's friends, but they are now a world apart from her. She doesn't get invited to their parties any more.

DH and I have to decline most events, because we have to think of whether DD1 will cope.

Forms.

DD1 is disabled enough to need a blue badge and DLA, but not 'visibly' enough to stop the staring and the questioning looks. People see a naughty, out of control child, not a disabled one.

Tests. This morning I was meant to wake DD1 at 02.30 because she had a sleep deprived EEG. Instead she woke at 01.50, having wet through her pull-up and with bad knee& foot pain. So we have been up since 01.50

Frustrating, tiring, depressing, being treated with disrespect by the authorities, losing your job, having less money, not being able to go on holiday, having no sex life, constantly being 'on edge', not having any social life, not being able to do simple things like diy due to the disruption.

grief
joy (my ds said 'my name is J' for the first time ever today - my dd1, ABA tutor & I raised the roof cheering )
exhaustion
poverty - proper not being able to buy food poverty
isolation - some people dropped us, some people I dropped because I can't cope with their perfect children, lots of people are just twats & I have zero time for twats
fierce love & pride
liberation - as each day goes by I care a little bit less about stuff that the non-SN world says is important - I'm an angry, eccentric old woman in-my-30s
foreverness - my life is never going to be as I expected it - I won't work anytime soon, I can't have another baby, my marriage is one of knackered, grumpy strangers. No crap sex let alone ubersex
future terror - fear of hoping for the best as much as expecting the worse.

urgh the authorities - there aren't words to convey my hatred for the system. It is wrong & bad & stupid & insulting & humiliating & shit in every single way. I've told the lot of them to fuck off - which means that I've brought poverty & suspicion upon myself. The first step to getting any provision at all - not good or adequate or well intentioned but useless at best - was to place my ds in a completely unsuitable 'educational' placement - only by damaging him could we prove his needs. Paed didn't like my response to that. Wankers.

Try the Joseph Rowntree Foundation - they certainly used to do a lot of very good research about disabled children and the impact on family life. Contact-a-family do lots of reports too and both base research on personal experiences of parents.

For finding out just how bad things can get, The Challenging Behaviour Foundation has a section on parent's accounts of living with a child with severe learning disabilities and very challenging behaviours.

Personally, it's all about not getting the help we need to live a 'Normal' life, with the regular, everyday family experiences. Just a trip to the park can be impossible for some