Lack of early years support for my son

Hi there, 

I'm new to the forum. Even though I'm looking a bit of advice, I know that I'm writing this post as I feel quite upset.  I have a 3 and 1/2 year old son. My son hasn't been diagnosed yet and the paediatrician doesn't want to go for a diagnosis yet but rather wait some time while professionals work with him. My son is non verbal and most professionals believe he may be in the spectrum. He struggles a lot with language, understanding and communicating. We started seeking for help when he was 2 years old. He was in the same situation as he is right now. Not a word. So at the time, they offered us hours at a local nursery to help him, however, my partner and I work, and we couldn't send him only for 3 hours a morning or afternoon. I must add that we don't have family, relatives or friends to help out so in that aspect it's just us. So then we decided to send him to a private nursery full day while we worked. At the beginning of this year, my son started in a new nursery and accessing the 15 hours funded by the gov. We are sending him an extra day paid by us. At the momenet he is not going full time as I'm on maternity leave so we can't afford sending me all the week. The thing is, since he has started at this nursery, he has been exposed to a lot of kids, social interactions, etc. He has learnt a lot i.e rutines, understanding of words and I can for sure see an improvement. 

My son is being seen by a speech therapy, at the same time, I have been doing a lot of activities with him, as my background is in education, I have worked from home through play, as well as any possible technique suggested. This has been going on since he was 2, but what I have seen that it's greatly helpful is the social interaction with other kids. After all, kids learn from imitating others. I can see that and even most professionals agree that if he was exposed to more of these interactions, then that would help him even more. 

Now I asked the council for help. They met us and denied giving extra hours at the current nursery. They said they would give us hours but at other establishment, but there is no way we want that because my son has already established routine and created an amazing bond with his key worker and kids.  Plus he is going through a lot of new changes i.e introducing PECS, potty training, new baby sister, etc. It has taken him months to adjust to the nursery he is right now. I know him and I know this wouldn't be a good option.

So today we have a meeting at the nursery where all professionals were involved (educational psychology, HV, speech therapist, key workers, the council representative, etc.) was involved. The talk was about how to help my son and  when the extra hours were mentioned, the one who represent the local authority said there was no chance in accessing extra hours and there is no proof that the hours would help him. That we have to fund it ourselves if we want him more time at the nursery.  The thing is, time passes by and I see the greater gap and how he is missing out. I do at home as much as I can but there are certain things that I can't provide such as social interaction with his peers. 

I feel bad because everything seems a fight. For getting a speech and language therapist, it took us more than a year. We've been waiting for some sort of home school support or something like that for the past 5 months. Everything seems to take forever and I feel alone with no help.  At the moment, I'm on maternity leave and this is why we can't afford sending our son to the nursery all the week. If I were back to work, we would. 

I also feel bad because they diminish my son's situation.  My son is growing older and he is supposed to go to primary next year, how is it going to do that when he doesn't speak?  

Aynway, I'm sorry for the rant. I just feel bad because I want my son to have the best chance and it seems i have to fight for everything plus everything takes forever. 

Thanks,

Cecilia

  • Sorry to hear you are having a bad experience with the authorities. I am in a similar boat my daughter is in the middle of a diagnosis of autism spectrum disorder and her school cannot offer me any extra help with her personal care as the teachers are not allowed to do this but its unfair for my daughter to come home in pain as she has not had the assistance she needs when going to the bathroom. We are always going to have to fight for everything for our kids. We are still waiting for the assessment professionals to do an assessment at my daughters school before they can give me an official diagnosis I feel like these months have dragged on just waiting for this appointment.

  • Yes, my son, before going to this nursery, he was at another one which was a very small nursery where he was mainly with a baby. Once he has started the current nursery he has been exposed to kids. He doesn't interact with them as he can't speak or understand, but he observes. After 7 months, now he gets involves in some guys. He knows they are there and has learnt to imitate some of them or engage in some guys but he needs help. We can actually see a great difference. At home, it's just us, so he isn't exposed to anybody else. We don't have relatives here or friends. My family is in South America so pretty much us is all he is exposed. I do a lot of activities with him to encourage but what has worked great is the daily interaction with kids at the nursery. Also the staff has been great in how to include him. Me too. I'll see what I'll do. 

  • Thank you. I'll take a look at that. 

  • That sounds really hard, although my autistic son at that age, and later, did not seem to learn from peers which was part of the problem, and I felt in retrospect he should have been at home with me not at nursery. All different I suppose. Social interaction is exhausting for him. Hope you g.et the help you need.

  • Hi NAS63386,

    I'm sorry to hear that you are experiencing difficulties with getting the help that you need for your son.  You may like to contact our Autism Helpline team who can provide you with information and advice . You can contact the team via telephone on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm). Please note that the Helpline is often very busy and it may take a couple of attempts before you get through to speak to an advisor. Alternatively, should you prefer to send a message, you can do so via their webform:

    https://www.autism.org.uk/services/helplines/main/questions.aspx

    Kind regards,

    Kerri-Mod