Child with learning difficulties & other complex needs

(22 Posts)
BuddingAstronaut Sat 15-Sep-18 08:38:03

Once again I've spent all night awake and worrying about what the future will hold for my daughter. She already had a diagnosis of dyspraxia, but a recent EP report (done as part of the EHCP application process) identified her as having low cognitive ability, learning difficulties, a social communication disorder, severe difficulties with expressive and receptive language, and as a consequence was described as a "very vulnerable child".

I'm struggling to process this information and would be grateful for perspective from parents of children with similar complex needs.

At the moment I'm catastrophising about what life will be like for her.

Many thanks.

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openupmyeagereyes Sat 15-Sep-18 09:29:15

I’m sorry OP, how old is she?
I can understand the worry, my ds is 4 and diagnosed with ASC. Not exactly the same difficulties but I found the first week after diagnosis very hard flowers

BuddingAstronaut Sat 15-Sep-18 09:35:04

Thank you open, she is just about to turn 10. Sorry to sound so melodramatic, but I'm imagining a future with an unfulfilled life, low expectations of her, social isolation & vulnerability leading her open to manipulation by others.

I know this needn't be the case with appropriate support and opportunities, but can't get these thoughts out if my head for the moment.

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PopadomPointer Sat 15-Sep-18 09:37:22

Just a hand hold here OP.

I have the same worries with one of my DC

BuddingAstronaut Sat 15-Sep-18 09:49:56

Thank you Popadom.

Do you have any recommendations on how to go about getting support as a parent?

At present, she's in a mainstream primary and I tend to avoid the school gate chit chat as it centres around issues that seem trivial by comparison and totally irrelevant to us, e.g. tutoring for eleven plus entry to selective secondaries, practice for grade 4 piano exam, etc!

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pleasegotowork Sat 15-Sep-18 10:18:37

Also no words of advice but I'm in the same boat. Dd is 8 and diagnosed with dcd and spd. Probably other issues but we're managing without other labels for now. When I expressed my worries about her future, the OT suggested I may need counselling to come to terms with her disability. It's very lonely as parent.

openupmyeagereyes Sat 15-Sep-18 12:41:18

You’re not being melodramatic. It’s natural to worry, even if it’s not helpful, and the future is unknown.

Does she have an EHCP in place to help support her at school?

openupmyeagereyes Sat 15-Sep-18 12:44:45

I tell myself that excessive worrying will not change the outcome (unless it triggers an action). It mostly works but not always.

BuddingAstronaut Sat 15-Sep-18 13:26:05

Thank you for sharing your experiences please and open.

We in the process of applying for an EHCP for her. Also starting to think about secondary school options.

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Sirzy Sat 15-Sep-18 13:29:14

Worth also remembering that she is the same child still as she was before you had that report, the report just means that support will hopefully be easier to Taylor to her needs.

Do you have any parent carer forums locally? I have found them a fantastic resource, not only for help with navigating the system but also for the chance to talk to parents who understand

BuddingAstronaut Sat 15-Sep-18 13:45:04

I think there's a large local Mencap group for parents, carers and their children. I was thinking of checking this out. Initially on my own then taking my daughter.

I don't know about online forums but will look into this. Good to hear you've found these a fantastic resource Sirzy.

I agree please, this leaves you feeling lonely and isolated as a parent.

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openupmyeagereyes Sat 15-Sep-18 13:50:38

Definitely check it out, it’s so nice to be able to meet other parents with similar issues and people there will know what sort of support is available, other groups that you and your dd can attend etc.

spinabifidamom Sat 15-Sep-18 23:33:59

My 1 year old son was born disabled. I do still think about the future and whether or not his twin sister will advocate for him. But at present I think he’s doing so well. His disability does not seem to have affected his overall development too much. Find a good supportive group online. Contact a family is a good resource for information and practical advice.

BuddingAstronaut Sun 16-Sep-18 06:04:51

Thank you spinabifidamom, glad to hear your son is doing so well. My daughter is very determined and I take some comfort in that. She often surprises me with her buoyancy and her determination to achieve a goal even though she clearly finds this more difficult than other children.
In terms of advocacy, I do wonder if her brother will end up having to be her carer when I'm no longer here. Naturally, I worry about that being a burden for him.

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SproutsMa Sun 16-Sep-18 21:54:45

Hi BuddingAstronaut, just wanted to say that I recognise a lot of those feelings. My DS started school last year - he has autism and learning disability (oh and tons of other stuff lol).

We decided to take some power back. He needed to be in an environment where his needs are understood, where his learning potential is stretched as far as is realistic for him, where he has a peer group of people just like him so he doesnt question why or if he is different, where expectation of him isn't unrealistic. For that reason we chose a special school for him.

He was happy - he is still happy and as you say, our kids are very resilient. They cope far better than we do.

I want him to be happy and sorted - and for that to happen I had to try and get past my own fears and be proactive. Its helped. A little ;)

SpringerLink Mon 17-Sep-18 14:33:11

I was hoping to find a link to the conversation, but I can't. There are a few threads on here from parents of older children saying how well they are doing, and what they are now able to acheive. @ellie56 is a parent that I think has posted about how her DC is doing in a very positive way.

Reading that kind of thread might help you to feel more positive about the future.

BuddingAstronaut Tue 18-Sep-18 12:04:12

Thank you SproutsMa. Good to hear your son is happy and sorted in his school. I'm realising being happy and reducing anxiety levels at school is as important as academic achievement, in fact it lays the foundation for learning. I hear what you're saying about taking some power back. As a parent it's easy to feel you're being swept along in a tidal wave where all the important decisions are controlled by others. With each assessment and report, it's been necessary for us to re-evaluate the priorities and reset our own expectations. Exhausting, and I could fill a shelf with all the paperwork that's been generated!

Thank you SpringerLink, I'll look up some posts by Ellie56. I do need to hear some positive stories about how the future has panned out. Wasting my energy worrying is helping no-one.

At the risk of sounding an intolerant and mean-spirited bitch, I've found it frustrating to have conversations about my daughter's difficulties with some of my friends. Often they just want to share something they think may help, but it's a strain to find a way to respond appropriately, e.g.
"that sounds amazing and glad to hear it helped that girl you know, but doubt wearing coloured lenses are going to solve all my daughter's problems"
"thank you for suggesting that lovely nurturing independent school. Yes I'm sure my daughter would benefit from the small class sizes and the opportunity to join pony club, but I'm afraid there's no way they would accept her and/or could meet her needs"
"interesting to hear of those near-miraculous results obtained through cranial osteopathy, but dubious it would completely cure her meltdowns, sky-high anxiety levels, poor self-esteem"
And so on........

Obviously those are fictitious responses and I was much more gracious in my actual replies!

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SpringerLink Tue 18-Sep-18 19:50:52

You don't sound mean spirited. Your friends sound a bit unkind to be honest.

Are there other parents at school who have children with SEN in your DD's year? I have totally different school-gate conversations about my DS and middle DD. DS has ASD is not very academic though is bright, and is challenging, middle DD is a gifted and talented goody-two shoes. I have had to adapt to very different school interactions for each of them. But my mum friends are nothing but supportive of my struggles with DS, and that is very helpful.

Ellie56 Wed 19-Sep-18 01:18:15

I think the important thing is not to look too far ahead.

Children, even those with disabilities develop and grow and learn. If DD is in a mainstream school she must be capable of learning alongside her peers, even if the steps of progress she makes are small. With each one of those small steps, she is still achieving. Don't measure her against the other children; that way madness lies and it is pointless. Measure her against what she was like last year. Think what she can do now that she couldn't do then.

Focus on what your child needs now and put all your energies into making sure she gets all the support she needs now. The right level of support at the right time in the right placement with the right people is key to ensuring DD makes all the progress she possibly can and achieves her full potential.

When our son with autism was 3, he had virtually no language, no social skills, exhibited bizarre behaviour and regularly had meltdowns.

When he went to school at 5, he still had poor language skills, no social skills and had no idea how to behave. He regularly lay down in assembly, refused to co operate in class and used to hit the staff and other children. Infant school was a nightmare.

He was not diagnosed with autism until he was nearly 8. By this time the hitting and lying down in assembly had stopped, and he was conforming more at school, but we noticed his behaviour at home was much worse. It was as though he was only just managing to hold it together for the time he was at school and then all hell let loose when he got home - meltdowns, throwing things, climbing out of windows, threatening us with knives etc. and at times I really feared for the future.

I now realise a lot of this was down to his school not giving him the right provision and the right level of support . The gap between him and his peers was widening all the time and he was really struggling. At the end of year 2 he had been functioning at age appropriate levels but by year 6 he was well behind the others in his class as lessons became harder and more abstract.

Despite this, by the time he was 11, our son bore no resemblance to the little boy he had been when he first started school, although he still struggled with language, was emotionally immature and still needed a lot of support at school.

He went to a fabulous secondary school where they put in virtually 1:1 support all the time and he settled really well in a very short space of time. They also put him in small groups for English and maths and worked on his social skills. Although he still found things difficult at school he made progress and all the behaviour problems we had up to then stopped. I believe this was because he was given the right support at school, by people who understood autism, and were experienced in this field.

He has continued to improve all the time. He has developed a sense of humour and is very caring. When he was 16 I couldn't envisage him ever living away from us or doing anything on his own. I thought then that eventually, we would end up later in life, a doddery old couple with a 40 year old man trailing round after us wherever we went. The idea of our son even catching a bus by himself was unthinkable.

Four years later, after training , he was able catch the bus back home from college. He is now 23 and regularly goes out on his own in the local area which he is familiar with, and often catches a bus into town or some other local place. He can use a mobile phone and always takes it with him and keeps it switched on, so we can keep in contact with him. At first he had a cheap phone that he could just take calls and text on. Then he learned you could do loads of other things on phones and he asked for a smartphone of his own, so he could do all those things too.

As the years have gone by, we have met many challenges, but our son has continued to develop in his own pace. Mainstream FE was a disaster as the staff had no clue about autism and just expected him to fit in with everyone else. Not surprisingly the placement fell down and 3 years ago, our son was diagnosed with an anxiety disorder .

He is now in a specialist residential college for students with autism, 160 miles away from home, where the staff are absolutely fabulous, and where he is making fantastic progress, learning independent living skills and doing things I would never have thought possible a few years ago.

He has learnt to cook, do his washing and manage money. He travels home on the train from the South West to the East Midlands by himself, and is doing work experience dealing with the public. His confidence has improved and his self assurance is becoming more apparent as time goes on.

He still struggles to understand complex language, still has difficulties in social situations and will probably never live fully independently, but he continues to surprise us, so who knows?

BuddingAstronaut Wed 19-Sep-18 13:37:32

Hi SpringerLink, I don't think my friends mean to upset me. I think their intentions are kind, but they just don't comprehend the extent of DD's difficulties. They have no reference point and the natural instinct is to try to 'fix' something. To be honest, it's hard to keep up with the status quo as her parents! Each time we get a report on DD the goal posts change. Sometimes reports contadict each other. She's tested differently on the same tests on different days. The only common feature is everyone describes her as complex! The Local Authority EP said rather unhelpfully she doubted there was a school in whole country that would fit her profile.

Everyone assessing her is just seeing a snapshot. I'm starting to get hacked off with her being viewed as a collection of difficulties. She's a person with strengths and weaknesses just like anyone else, and has her own opinions and aspirations and deserves respect.

I agree about school interactions, and tend to 'compartmentalise' conversations about DD and DS (no special needs). There are other children in DDs class with SEN, but they tend to be specific learning difficulties not requiring an EHCP.

I'm gradually coming across other parents of children of various ages with the level of needs in line with DD's. It's such a relief to be able to speak openly and for my concerns to be met with real understanding.

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BuddingAstronaut Wed 19-Sep-18 17:02:53

Ellie56, Thank you so much taking the time to write such a detailed post and to give me advice and tell me about your son.

It's so encouraging for me to hear about the fantastic progress he's made over the years, his continual improvement and his present situation successfully studying at college and doing work experience whilst developing independence all the time. He sounds a determined and hard-working young man, and I wish him every success and happiness.

I can see some parallels with my daughter in terms of academic progress at primary school and when the gap with peers started to emerge. Also the aggressive and uncooperative behaviour at school when needs were not (and are still not) being met.

I wonder if you could explain what you looked for when you were choosing the right secondary school for him.

Thanks again.

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Dorothyparker010 Fri 23-Apr-21 21:55:03

Hi @BuddingAstronaut just wondering if you’re still around. What you describe sounds so similar to my DD who is 6. I thought she had dyspraxia and a language disorder amongst other things but it’s becoming clear she has cognitive issues too so I’m feeling pretty overwhelmed. Just wondering how you and your DD are getting on a few years down the line...

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