Published on 12, July, 2020
Hi, I am new to this, I have been trying to cope and deal with all of this and now I really need someone to speak to who understands and has been/is going through the same. It’s so hard speaking and not being heard, this feeling can’t be understood unless you have experienced it yourself.
My daughter is 3. She met all physical mile stones but we always knew there was something different, she avoids eye contact, doesn’t answer to her name, hand flaps and puts her fingers in her ears and has the biggest heart breaking melt downs over things we just cannot fathom or as it seems to us over absolutely nothing but obviously it is something to her. She has many single words but cannot put two words together or have any form of back of forth communication/conversation. Her understanding is also limited, she doesn’t say anyone family members names not even mummy or daddy and has no interest in interacting with her peers. About a year ago we were told She has autism. It completely turned our world upside down and it has taken a long time to get our heads round and deal with it.
It just breaks my heart to watch her be so frustrated because she can’t communicate what she needs or wants to us. It breaks my heart that now as she is getting bigger and looking so beautiful and grown up the noises she makes and her hand flapping and her not being able to speak gets noticed by others and I just don’t want her to be singled out. I worry so much is her communication going to improve ? Are we ever going to be able to have a conversation with her? Will she be able to make friends? As primary school gets closer and closer I feel like I am suffocating and panicking and breaking, more than anything I want to do everything I possibly can to help her. We are awaiting follow up paediatrician appointment , our first speech and language appointment and send teacher in nursery appointments. If anyone has been through this please could you share your stories / helpful tips anything at all.
Hi there am Tia’ my little one could also be autistics we are still awaiting an assessment but I feel like you do as this sounds very familiar to me. I just wanted to catch up to get an update from you as to how things went now being 2 years on?
NAS51302
Hello
I can 100% relate to what you are going through and everything you are feels my right now as I am currently going through this too. My little boy is 3 in April, he doesn’t have the official diagnosis of autism yet but the professionals we have been working with and nursery we all know he has we are just waiting for it on paper.
My little boy is non verbal at the moment, he spoke single words but only a limited number until he was 18 months old then everything just stopped. We have a private speech therapist and he is starting to use PECs (Picture Exchange Communication) as a form of communicating with us. Very early days with that and still very raw from being told it could be autism in September 2018.
To give you an idea where we are in the process, I saw health visitor May 2018 they did us the referral to Child Development Centre and then September 2018 we had the initial assessment where we were told it could go down two routes, the see you in six months he just needs more time or the further assessment route. We went down the further assessment route. As soon as I walked out that door I was finding him a private speech therapist because our NHS couldn’t give him the time or have the funding to see him every two weeks and I wanted more than anything my baby boy to speak so that life would be some what more manageable for him if he could communicate with others. Following on from then he sees private speech therapist every two weeks, we then had a hearing test standard when they don’t really speak we was told that was in November 2018 and then we have just had our consultant paediatrician appointment for the medical assessment on 31 Jan 2019. This was pretty standard health check family history any questions you might have about anything you might think have contributed to the delays, like I asked about my sons birth as he wasn’t breathing when he was born and was resuscitated so I wanted to know if that caused his development delays, which they were able to tell me it didn’t. They also take urine sample and bloods from little one and currently we have the medical side of the bloods back which are normal thank goodness but we are waiting on the genetic testing to come back. This they have said could be up to six months, the longest wait of my life it feels and it’s only been 3 weeks since the bloods were done!
So now we are just waiting but I was told at that appointment they are still looking to diagnose in September 2019 when it will be a year since they first saw him.
All your worries and your concerns I have all the same ones I just want to protect him as much as possible but I also want to give him a chance in a mainstream school but with th right help in place. Don’t try and do th education and extra help on your own I’m not sure where in the country you are but have a chat to your GP about any support groups there are professionals who can help you with the plans needed for school and extra help in school.
We have our first meeting with professionals and nursery on 8 March about planning going forward for our son.
Ive always been a stand back kind of person but having a non verbal son now I’m not just my voice but his too and I’ve had to push my own comfort zones to make myself heard and fight for what ever I can get him to help. The earlier the help gets in place the better.
I feel your pain and your heartbreak when I watch my little boy off in his own little world not a care for anyone or anything and I just wonder what he’s thinking and what’s it like for him. He doesn’t seem to know any different at the moment and he’s so happy and I have to try and take comfort in that and just know that he’s loved so much no matter what happens he’s still my gorgeous baby boy.
The best of luck and feel free to message anytime I really do know how you feel.
x