Toddler with autism

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

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

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?