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What are the difficulties in raising a special needs child? (I'm not trying to upset anyone but am doing course work and could do with answers please)

(15 Posts)

As I said in title really. I am doing a diploma and one of the questions asks how a child with learning disabilites affects family dynamics. I have a child with special needs myself so I know of some of the joys and dificulties but would love to have more input from other mothers. I hope I'm not upsetting or offending anyone I just want to be able to give a real answer not just a text book one. I want to gain real understanding of the issues if possible. Thank you

countydurhamlass Fri 14-Jun-13 04:44:16

my ds has mild learning difficulties due to a medical condition. he is now 9 year old. for us it has meant my career has had to take a back seat whilst my dh ploghed on with his (i dont regret the decision and i am not jealous of him). i reduced my hours (dh has always earned more than me so it made more sense). so this has resulted in us being less financially stable. we have gone from both working full time to me working part time and my dh working more hours. We decided not to have any more children because we did not feel that we would be able to give another child as much attention as ds needs and that it would not be fair for another child to "take a back seat".

ds has sensory issues, autistic traits, ocd traits, needs constant reminanding, low concentration/attention span. (all mild), he can function independently and attends a mainstream school with extra support.

we have to juggle hospital appointments with work and every day life. i am lucky that my work colleagues were quite understanding (i now dont work for other reasons) but that was because i have worked with them for over ten years, my bosses never made a big fuss about time i needed off but i can imaginse some bosses being horrible.

you really do get to find out who your true friends are as well!

to look at my son and to put him in a group of children his age you would never know he has any learning difficulties and that is the hardest part because people can say horrible things becuase they see a child like all other children and dont understand why you have to do the extra things you do or why your child is being noisy or playing up

everything we do as a family has to be well planned out and my ds needs to know exactly what and when we are doing things. it is only now that he has gotten older that me and my dh have "us" time.

i have highlighted some of the negatives that i can think of, off the top of my head.

there are so many positives as well but i dont think that is what you are looking for . :-)

You may get more replies if you come over to special needs children board.

JakeBullet Fri 14-Jun-13 06:44:24

My experience of this as a Mum is the lack of support out there for a child who doesn't meet the criteria for extra input by social services etc.

My son is autistic and really needs much more in the way of work on his empathy skills for example but nobody wants to take him as he is not "bad enough" to meet the criteria for their service.

Thank you very much for the reply. I will use this in the coursework. I deliberately didn't go on the special needs board as I didn't want to upset anyone. I almost put it there but it just felt wrong and intrusive.
Thank you again for the reply

ohmeohmyforgotlogin Fri 14-Jun-13 07:11:52

Take a look at the This is My Child thread/ campaign on MN.

dopeysheep Fri 14-Jun-13 07:14:23

Well one way my dd has affected family dynamics us that her older siblings have more responsibility to look out for her/play with her/generally codfle her. They know she isn't able to do as many things as a 'normal' child of her age and they do respond to her needs.

They also just rough and tumble as well but I think they are more considerate and patient with her.

yomellamoHelly Fri 14-Jun-13 07:29:53

Ds severely disabled. Never get a moment off when he's around as you can't just leave him. Needs endless physio etc. Constant appointments for therapy, equipment, hospitals etc... Huge amount of paperwork for him and always a few medical things going on which makes my brain ache to keep on top of. All the "professionals" like to suck their teeth and tell me it's a very complex case so it's always up to me to push for whatever my gut is telling me. "Professionals" can be very patronising. When he's around other two dc don't generally take top priority. Dh stepped back from all day-to-day stuff so generally leaves me as the main person responsible which gets very wearing after years of it 24/7. Used to have savings, but lack of support available has meant we've used them up (+ some) which leaves lack of money for everything else in life. Everything's a battle to get stuff for him. Dream of getting a job etc, but seriously doubt I'll be able to cope with it and all the other shit. Find it difficult to go out and very limited social life. But don't have much energy left anyway. Feel I've aged a lot in last few years. But do love ds to bits!

francescalily Fri 14-Jun-13 10:19:49

DS has ASD, dyspraxia and SpLD, although in some areas he has a high IQ. He has challenging behaviour due to his SN, has been excluded from school numerous times, and now attends a residential special school during the week. The residential aspect means that I'm not as exhausted as other parents of SN children, but it still affects the family dynamic - he is home at weekends and holidays, meaning it's still hard for me to work, and it's hard to have much of a routine. Holidays are often spent catching up with appointments, and doing things that we used to be able to fit in during the week, like haircuts and visiting relatives. He doesn't have any friends in the local area because his friends are all from school, and they live in counties across the country so he only gets to see them at school.

He is an only child and part of the reason is because his needs are so high I don't think I could balance the needs of any more children. But it does mean that life is a bit easier, we can focus entirely on him and be flexible with his needs, plus when he is at school I have time to be 'me'. DS is a teenager but he isn't anywhere near as independent as others his age, he cannot travel alone, cannot deal with simple interactions like buying something from a shop, and needs constant prompting to dress, wash, get ready etc.

I have found dealing with professionals the most difficult aspect. I am not confrontational or pushy but I've found out that I had to be in order to advocate for DS. I had to go to tribunal to get his school place, I've dealt with inappropriate diagnoses and social services interventions, and have ended up paying to see private doctors/therapists in order to get an independent assessment, plus legal fees to help with the tribunal.

Tiggles Fri 14-Jun-13 10:42:38

I have 2 boys with autism (Aged 11 and 6) and the youngest (4) is NT.
In terms of family dynamics, having DS3 being NT has actually made the greatest affect. This is because he finds it hard to understand why his older brothers won't wave goodbye to him naturally, or why they want to 'play' on their own and don't do pretending games as well as he does, he gets upset when they can't understand why he is pretending that a large spoon is a guitar etc.
We probably hadn't realised before that how much our lives evolved around DS1's autism, e.g. we would never make a spur of the moment decision to go out for the day as it would just upset him, couldn't spring a surprise present as it would upset him, but it was just the way that the family grew into.

My son is 3.5 and has Downs Syndrome, we are lucky comparably as he seems fairly high functioning, although he has just been assessed for development and is currently "behind" by 15 months.

In his early years medical appts and endless arrangements around my other children were exhausting, then we seemed to have some lovely time with not too much happening but now I am in the middle of applying for Statutory Assessment and it's a complete pain.

The biggest difference for me has been, by the time my daughters reached his age, they were thriving in the nursery class attached to our school and although they were still little children, so by their nature demanding, they were growing away a little from me and enjoying their own space to play and starting to play at friends houses etc.. My son very much relies on me to provide entertainment, education, learning Makaton and generally smoothing his way through his days to a great degree. Compared with their early childhoods it is pretty exhausting. I'm often thinking about how to bring about the next little steps to increase his independence. I can see that he is going to continue to need huge amounts od practical support for longer than they ever did.

We love him so much, but there is no doubt he wears me out more!!

Januarymadness Fri 14-Jun-13 11:03:07

worrying if the path you chose wrt schools etc is the best one. how hard do you need to push for statement or otherwise. Is statement the best thing etc.

You dont get help unless you engage and push for it. if you have to push for it is it really needed or the right thing etc....

LisaMumsnet (MNHQ) Fri 14-Jun-13 15:42:22

Just to let you know that we're going to move this thread to Media Requests shortly. MNHQ

Sorry about breaking the rules. I was not aware that asking something like this was not allowed. I guess I should read the terms and conditions.
I am honestly just doing a diploma in health and social care and one of the questions was on the impact of the family of people with disabilities. I didn't think i was qualified to answer it as my son only has dyspraxia. I wanted to give an honest and real answer to the question. Thank you again for the help it has been very much needed. Now I just have to hope that I manage to pass the diploma , fingers crossed.

HolidayMummy Fri 21-Jun-13 10:05:24

Hi there. I can add the other perspective if you like - being a disabled mum of 2 perfectly healthy boys. I had severe SPD in pregnancy - my pelvis collapsed & caused major spinal issues. It is a slightly different perspective but I don't know if it would be relevant to your coursework - if so, then I am happy to add more detail as we too are a "forgotten" bunch!

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