Hello, We have had a recent diagnosis of a Significant Learning Disability for our almost 10 year old boy, it is affecting all areas of life for example, self care, personal hygiene, learning, development, understanding, memory skills, processing skills, social skills, everyday functioning, mobility to name a few and other common symptoms one has with a Learning Disability, he has so many difficulties everyday that has been missed or haven't been fully understood by others/professionals.
He has all the right support in place at home and in specialist school.
The Doctor that diagnosed him with a Significant Learning Disability with Significant Dyspraxia and other delays ontop of having symptoms of a Neurological movement disorder didn't explain fully what a learning disability is and how it affects a child like mine so I don't have much understanding of what it is and why my child has soo many difficulties.
I wanted to get more understanding and knowledge about Learning Disability in general and what and how it effects other children like mine?
I was also wondering what we could do to look more in depth into his learning disability to see if there are other things that have been missed as other diagnosis's?
Thanks
Sam.
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samcollinson95
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Hi samcollinson95, I'm glad your son is getting good support at school and home.
My son ,now 21, was diagnosed with autism and severe learning disability (nonverbal) aged 3.
Learning disability is such a wide spectrum, and individuals can be effected in many different ways and at different degrees of severity .
They will all accomplish and triumph skills within their own abilities over the years, often beyond a parents expectations, I never expected my son to be able to swim like a fish or ride a bike, which he achieved, he enjoys life which is all that matters, there will always be ups and downs.
If you want to know if the learning disability was caused by a recognised genetic condition, maybe you could request your doctor to make a referral for the NHS WGS (whole genome sequencing), which should have been offered for any children with learning disabilities, this may give you more answers as to the cause. If a genetic cause was found, you could then connect with others who have children with the same condition for more information and support. But you will always find support from members on this forum and mencap.
We had WGS for my son a couple years ago, but unfortunately it didn't find any answers, the method used was called ' short read sequencing', but a more recent method of reading WGS is 'long read sequencing' which can find genetic differences that short read sequencing may miss, I read the nhs would be introducing this method.
Totally agree with this. We had no answers as to why my son had learning delays/disability, speech issues, gross motor skills delays and eye problems until he had whole genome sequencing (which took 18 months) and we found out at 9 years old that he had something called Lamb Shaffer Syndrome. This explained everything and allowed us to connect with other parents with the same diagnosis.
I can't really add much, other than to agree with everything that Bluey203 has expressed so well. In our family's case, it was discovered that running through my family is Fragile X Syndrome which is passed through the X chromosome. Whilst we were all totally unaware of it previously. it has expanded in the youngest generation of the family and affects both my sons and also my sister's daughter. Genetic testing and counselling came too late to be helpful to be able to screen future pregnancies in our case, but it is still helpful to have a definite diagnosis and know what is behind our children's challenges and how best to help them.
Having a child with special needs in the UK means Parents have to become researchers some things to research and join relevant support groups are ADHD, Autism, PDA, Sensory Processing, to start you off. xx
I do remember finding it really upsetting and unhelpful when no-one could reassure or help us understand how our son's development would be after his diagnosis when he was 4. It was tough because I could not see anyone else like him, he had no syndrome/label that could point us towards the future and I was angry that professionals were somehow in the know and not telling. It all felt abstract and I needed a picture I could understand! As with any child you put in love and energy, exhausting and trying at times, to find whatever potential is there. We found that joining activities and social groups where he was just himself and not 'special', helped him grow and helped us get support and information from families who were ahead of us in the learning disability world. We found the right schooling and began to see what he could do as well as what he could not. Our son is now 36 and living a supported, happy, fulfilled life but we have at times had to fight and grieve for the lost boy but also know that we have given him as many opportunities as we can and take delight in the person he is. It has been a process of grief as we came to terms with being in an alien world where there are no outlines, but we found that it became much clearer and now our son is happy in his own life. It really has not been easy but he gives us and the world so much. We discovered that with time you become the expert on your child and no-one else can do that. To paraphrase Michael Rosen, you will meet some long grass, you can't go over it, you can't go under it, you just have to go through it.
Couldn’t have put it better. I’m no afraid there is no text book that tells us where our children will land. My daughter is 38 and this has been our journey. Create every opportunity you can for your child to blossom and learn how to survive in the big wide world. Fight for the support you need, grieve for what you’ve lost and rejoice in what you have. xxx
Hi Sam. 'Significant' learning disability isn't a usual diagnosis - LD tends to be categorised as 'mild', 'moderate or 'severe/profound' and relates purely to cognition, though it often comes hand in glove with other difficulties. This makes me wonder if your son's diagnosis was actually 'significant learning *difficulties*' which is a different condition and includes things like dyspraxia, dyslexia, dyscalcula, sensory processing difficulties and so on. I'm sure if you contact the Mencap helpline, they will be able to help out with where best to go for explanation and support.
The journey through school and into adulthood has been very long fraught with obstacles and unhelpful people, Thank goodness for Parents who have been through it and founded support groups,
I'd suggest you try to get an in-depth assessment by an occupational therapist (OT) who specialises in supporting children with neurological differences who may have sensory processing disorders.
Your son is in a specialist school, so there should already be an occupational therapist working with him, and you could simply ask for a meeting with them, and try to go online and research sensory processing disorders and neurodiversity to see what you can find out and whether what you read seems to reverberate with your experience with your son. You will then be able to decide whether you need to get further opinions beyond what is available at your son's school. In our experience, even specialist schools sometimes fail to educate themselves, fail to set high expectations for their pupils, and fail to research and implement tailored learning strategies for each child.
You (and his educators and carers) need to know how your son is affected by his condition and what are his learning strengths (so he can build upon them) and shortcomings (so he can develop ways to work around them, or can work directly to improve how he functions, if that's really important). An educational psychologist might also be helpful. In our experience, a really good, well-trained OT made a huge difference.
Also sometimes you can get grants to get private assessments, and that can be really helpful. Cerebra were doing grants, and the Family Fund might, as well. We had a wonderful OT and used to spend perhaps £120 for a visit, three times a year, but she went abroad, and everything costs more now. NHS OTs tend not to have the training for anything beyond fitting specialist furniture - although more recently my son, now an adult, did get assessed by an OT who understood what is meant by sensory processing disorder, so that was a nice surprise.
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