Hi

[DFam19]

Hi. I'm new here. I am basically looking to share my experience with others to see if anyone has gone through anything similar. I have a daughter who is 3 in February and has been diagnosed with a global learning delay and hypermobility. I feel lost as I feel like i do not know how to help her. She does not like to engage with others and she does not appear to pay any attention if someone is trying to show her something. She does not speak and does not appear to have any interest in learning. She loves to scribble and seems interested in numbers. When she learns something new she will repeat the behaviour many times over the course of a few days and then will never repeat it again. I have her enrolled in a special needs nursery but they only have availability to have her for one afternoon a week and we were lucky to get that. Her paediatrician feels that she should be tested for autism but the waiting list is 18 months long so I am worried about what I can do to help her while we are waiting. She has been tested for hearing difficulties and genetic abnormalities but so far everything has come back clear.

Has anyone else had a similar experience with their child and if so, do you have any advice? She seems very frustrated that she cannot communicate her needs so any advice on her to help her do so or to help engage her interest in things would be much appreciated.

Thankyou

[Eeviee]

Hi there. This sounds exactly like my son when he was her age. It was a very bewildering time for us as we had no knowledge of learning disability or autism and initially speech and language was the main concern. My son received speech and language therapy from age 2 1/2 years and was only diagnosed with autism when he was 7. I’m afraid you will probably have difficulty in getting timely support from professionals unless you are able to pay privately. Your daughter is entitled to an education and health care plan even at her age but without the proper reports from speech and language therapists, occupational therapists and an educational psychologist your local authority will resist funding your daughter. Others may have had a different experience and not had to pay for these reports but I did and was able to get my son into a specialist provision at 4 and then a special school from the age of 5. I have had to advocate strongly for him all his life like most parents. Unfortunately all children are different and their difficulties will unfold over time so at a young age it is difficult to know how a child will develop. I don’t want to upset you but you will need to inform yourself and contact all the various charities for information and support. You could try starting at websites called special needs jungle and IPSEA. Others will make other suggestions. Good luck. Stay strong and make contact with other parents in a similar situation do that you have a network of support. This is something I wish I had when my son was growing up.

[Jofisher]

Hi bless you I know how hard all this can be and many others will understand to, maybe speak to the Autistic society to get some advice from them. Carers association maybe able to give you lots of contacts and there’s the child disibility team at your local council. If she’s I’ve incontenent you should be able to get free pads and your also entitled to benefits so make sure you look into that as well. Practical help is essential as you will. We’d it. My son was staented at two but I know they call it something else now so you need to ask your health visitor and or social worker. If you need respite speak to your social worker do they still have portage ask the social worker it’s really good they come out and work with you and your daughter to see how she’s progressing. There’s lots of charities where you can get from the family fund or the Joseph row tree trust is another one. I hope some of this is useful happy to chat anytime take care and good luck with everything

[BenjiB]

Great advice from others. Also get the ball rolling for an EHCP so it’s in place before she starts school. You can apply yourself. IPSEA is a great resource for help and support.

[Devm12]

Hi,

This sounds very similar to our situation, I have 4 daughters youngest is 3.5, she is in the process of ‘diagnosis’, under paediatric care waiting for autism assessment, genetic test results and possible global development delay.

We struggle considerably with her she has no sense of danger and constant tantrums. She has limited speech, babbles but cannot articulate herself at all, cannot express any emotions or feelings. If she doesn’t like dinner she will throw her plate, also not anywhere near toilet training and wears nappies which when soiled she can smear and put her hand in her poo.

Her peers all seem fairly ‘normal’ and some

Parents don’t understand, also with 3 other children as parents we struggle with managing the care for them all without focusing too much on

We have some support referrals for the education side of things, but this is still very early stages. Not really sure what the aim

Of the post is, more offloading to parents who may be more understanding?

Thanks

[DFam19 in reply to Devm12]

I just wanted to know if there was anyone with similar experiences to me. All of my friends have neurotypical children and they don't really understand my daughter or why she is the way she is. I also was wondering if anyone had any tips on how to engage her attention and encourage her words? She seems like she is quite bright but has trouble with communication and expressing what she wants.

[BlueberryYellow in reply to DFam19]

Hi there, It is so frustrating for her and you when communication is a barrier.

Have you looked at cutting down language to the bare minimum. Using only key words. It feels wrong and counter intuitive but can really benefit you both. There may be difficulties with processing. Signing with words might also help.

[Hidden]

Hi, I'm in a similar situation and have had Portage come in to help me out which was really great in terms of getting advice and support for me too, great to have someone experienced within the SEN field to talk to.I have bought sticky backed velcro and put some strips of it on the wall (or you can make her her own book with the velcro in) and then I took photos of my sons' regular activities so a photo of cereal and a photo of toast, a photo of brushing teeth, a photo of marble run (his favourite toy) etc. I then invested in a laminator which has been fantastic, simply laminate the cards and put the other bit of velcro on the back and then my child can select what he wants at breakfast/snack time etc or I can use it to tell/show him what order we will be doing things so I've set the expectation. I agree with Blueberry yellow in that too many options can be frustrating and overwhelming so keeping language to basics does help. Another thing that my son loves is singing, he can sing 6 or 7 line sentences from songs where as he struggles to construct spoken sentences.

Whilst I had Portage visiting the lady emphasised the importance of sensory experiences. I think a holistic approach is great and finding things the child is engaged with help all round.

I am still in the process of getting diagnosis for my son and it's been quite isolating so I'm hoping to get support and advice from this forum. Perhaps you could contact Portage as they really helped me. All the best

portage.org.uk

[Eeviee in reply to Hidden]

Hi there. My son is now 24 but did not have many words when he was 7. A few more started to come at 12. Now he can express himself but visuals are still a huge support to him.I think you are doing everything right by giving your son visuals now and the signing is a great idea too. A diagnosis gives you funding and some idea of what the issues for your son are but each person is different and he could end up with lots of labels. Keep up the good work.

[Hidden in reply to Eeviee]

Thank you x

[Bearbear08]

We have a daughter that is currently undergoing multiple tests to understand her global delay. She has never visually engaged with anything other than bright lights, her communication is delayed, she is hypotonic and as such unable to sit unaided or move around (not that she has much motivation). We're about to go through genetic tests for her. I think she has a visual impairment, but getting access to the right doctors to assess has involved a lot of fighting.I'm sorry that I can't offer any advice, but I wanted you to know that you're not alone (I've never felt as isolated as we do right now)