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Help for families without a diagnosis
Hi I'm Lauren, I work for Genetic Alliance UK running the SWAN UK project. SWAN stands for Syndromes Without A Name. We offer information and support to families of children with undiagnosed genetic conditions.
I'm here to help with any questions you might have about the issues you face when your child has a suspected genetic syndrome but the Doctors haven't been able to tell you what it is. I can put you in contact with other families in a similar situation, help with information about how to get a referral to see a geneticist or about research studies that your child might have been invited to take part in. I look forward to talking to you!
I'm here to help with any questions you might have about the issues you face when your child has a suspected genetic syndrome but the Doctors haven't been able to tell you what it is. I can put you in contact with other families in a similar situation, help with information about how to get a referral to see a geneticist or about research studies that your child might have been invited to take part in. I look forward to talking to you!
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Replies
I just wanted to say I feel exactly the same and it is very difficult.
My daughter just had an ICT Assesment at school today and have told us that they do not supply a touch screen laptop to help with speech, choice making and learning etc at home. they can supply a touch screen monitor to the school on a loan basis, but should I wish to help and encourage her at home, during the holidays or weekends, as she needs this input during her time off or she will and has proved in the past reluctant to restart when the schools go back! the answer is no. Touch screen laptops are expensive approx £600+. Does anybody know of any charities that might be able to part fund? Really stuck!
In terms of accessing support, it shouldn't make any difference whether you have a diagnosis or not - assessments for support should be based on your child's needs although in reality it is often more difficult to get through the first stages without a simple way to describe your child's difficulties. Some families have found it helpful to get their consultant to write a letter outlining their child's difficulties that they can then use to confirm their needs.
In terms of more general support, the project I work for (SWAN UK) is specifically for parents of children with undiagnosed conditions. We have a growing community of families who support each other through the various issues raised by having an undiagnosed child - as you both know it's really hard when you have no sense of what the future might hold. Lots of our members find that it can be really helpful / comforting to be able to talk to others in the same situation. Although all the children are different it can be helpful to talk to parents of older undiagnosed children and seeing everything that they are achieving. If you are interested in joining you can find our Facebook group here https://www.facebook.com/groups/205554229483224/, I know you would be very welcome!
Many of our members also contribute to our blog (or write their own) you might find helpful to read other families stories - it's surprising how often we get families discovering how similar their children are and then being able to share tips and ideas. www.swanuk.wordpress.com.
so for example, ask for the ADOS autism diagnostic observation schedule to be done to rule in or out an autism diagnosis. (great test, no speech required!)
in some ways, it was fortunate that my son had the ADOS while genetically undiagnosed and therefore was diagnosed ASD (and got place in fantastic ASd school) tho later age 13 (2 years ago) got cgh array done and microdeletion diagnosis.
ASd feaures are common with his microdeletion yet if we had had the genetic diagnosis earlier it might have been harder to get the ASd diagnosis iyswim... he ASD diagnosis (describing how he is and how he learns/acts) has been the most useful, in reality; tho is nice to know the underlying genetics....
also you can get comorbid diagnosies -so some children with down syndome may also get ASD diagnosis thru correct ASD diagnostic tools.
genetic diagnosis is useful but there is always a range of ability and you still need to go by the child's individual abilities/strengths/weaknesses . not jsut put it all down to "oh he has that diagnosis".
it is important to recognize strengths eg computers and use them for communication and learning
but at home he does use his ipad for leisure and communication .
karen the ADOS test will pick up where he doesnt perform - it looks at things like joint attention which very young babies will do - but no if ASD...
Netbuddy is a great place to start, join in the forums and start talking to other parents who are in similar situations to you - there is a thriving online community of parents of children with special needs and hopefully by linking in with these you can start to feel less alone.
You might also want to check out some of the Facebook groups that exist as many parents tell me that joining these have made a significant impact on their lives. Depending on the group it may be open or closed - for some families they prefer closed groups as they feel they can then post more openly about what is going on in their lives.
It might also be worth getting in touch with The National Autistic Society (http://www.autism.org.uk/) and the Dyspraxia foundation (http://www.dyspraxiafoundation.org.uk/) to see if they can offer you some specific advice about dealing with your son's difficulties and put you in touch with other parents in the same situation.
Another online community often spoken well of by families is special needs kids in the UK - they also have a forum. http://www.specialkidsintheuk.org/
Have you looked into whether you could get disability living allowance for your son? https://www.gov.uk/dla-disability-living-allowance-benefit/overview
If he was eligible you may then be able to access Carers Allowance (depending on the rate of DLA he was awarded). It's always worth getting support to apply for DLA as it's a very long form and can be quite upsetting filling it out, try getting in touch with your local citizens advice bureau to see if they can help. https://www.gov.uk/carers-allowance/overview
It sounds like you could really benefit from getting out of the house sometimes, have you looked into whether there are any support organisations / groups in your local area for parents of children with additional needs? It might seem a bit daunting at first but hopefully will help you to access sympathetic support and information.
I'll stop there for now as I've just thrown quite a lot of information at you! Feel free to come back to me with more questions or if you need more information.
As hard as it seems, try and take some time for yourself - even if it's just for 15 mins to have a bath or something. It sounds like you are doing a brilliant job looking out for your son and I really hope you find that your bravery in posting here is the first step to getting some support for you too.
Take care,
Lauren
We know a few
Information For Parents
What is this booklet about?
There are some children who have learning difficulties or health
problems, and no
-
one can explain the cause of these problems.
If you are the parent of a child without a diagnosis, this
information booklet has been written for you. It is designed to
help answer some of the questions you may have. We also give
you some ideas of helpful things you might do as a parent and
talk about some of the experiences other parents have had.
Unfortunately, it won‟t be able to give you a diagnosis for your
child.
"We have got no diagnosis, she is just Lisa, she is just unique.
But to be honest with you, we get so much enjoyment out of her
it totally outweighs any problems."
Source:
Mr. H. N. Smith (Legal services adviser)
http://www.clearwatersolicitors.co.uk