Published on 12, July, 2020
Hi everyone
Our little boy is 18 months old and we strongly suspect he has autism (two professionals have told us he has a lot of red flags and he scores about 15 out of 20 on the m-chat questionnaire but we are still on the waiting list for an official diagnosis which is around a 2-year wait where we live in the West Midlands).
As my husband and I begin to process what autism means for our little boy and our family, our main goal is to find other parents going through similar things, people that really get the situation, how frustrating getting a diagnosis can be and how limited the support is during this “limbo” stage. As we’re first time parents we felt we’d hardly got going on our parenting journey before we started feeling very isolated by our circumstances, and now find it hard to relate to our peers with neurotypical children as the differences feel so stark, so socialising as a family no longer feels practical or enjoyable as our little boy has no interest in other children (or adults) and having to constantly explain his behaviour to others feels both frustrating and upsetting for everyone involved.
At the moment it feels a bit like we’re the only parents going through this but obviously I know that’s not true. I’m really keen to reach out to others who feel in the same boat, who’d like to find new friends to share the journey with and want to find a “new normal” together. Our little boy is our world so we just want to find a way to make our world his, too.
As I said we’re based in the West Midlands but also looking for virtual friends too. I strongly believe that finding our tribe will make us stronger together as we face the many challenges ahead, and knowing we’re not alone feels so important right now.
Really looking forward to hearing from you, future friends!
Lucy
Hi Lucy,
I am a mum of an 8 year old and 5 year old. my daughter who is the 5 year old has had her first assessment and we are waiting for her to have an assessment at her school but we waited for 2 1/2 years before we got the letter for her first appointment. it was a long wait but even now we are in limbo as they have not confirmed it and we cannot get extra help until they officially confirm it. I am waiting for the new school year to start up and I am going to going to the chill and chat sessions at my local children's centre these can help as you meet other parents with children who have disabilities they also have different professionals come each week and help you with what direction you need to go in.
Stephanie
Hi Stephanie
Thanks so much for getting in touch and apologies for the delay in replying. I’m so sorry you’ve had such a long wait to get to this point, being caught in the system is so frustrating, especially when you’re trying to battle for support. I haven’t heard about chill and chat sessions, I’m not sure they have those where I live in the West Midlands but they sound like a really positive way to meet new parents, which is so key when you’re going through something like this. (Our local autism charity seems to be focused on helping families with kids over 5 so I feel a bit lost at the moment!) Has your daughter got an EHCP in place? I only ask as I recently heard that a diagnosis isn’t required to get extra support in school, although that doesn’t mean you don’t have to fight for it, as seems to be the case with everything on this journey! If you’re into podcasts I’ve found a couple that I’ve personally found really helpful – ‘Talking Autism – parenting your unique child’ comes from the perspective of a special needs teacher who also has a daughter with ASD, so her dual experience of navigating the education system as both a parent and teacher is really interesting, and her interview on a different podcast (Stories about Autism – series 2 episode 2 Victoria Hatton) talks about getting help in school pre-diagnosis so it might be useful during the limbo stage? Either way I really hope you get some more support in the new school year.
Thank you for replying. I have heard about an EHCP but she did not need this in reception as she is already in a small group getting extra support but its mostly for the bathroom she needs support in but her school cannot provide that. I think she will need an EHCP in year 1 but I am going to see how her first few weeks go in year 1 and then move forward if needed. How do I find these podcasts as I would be interested to check these out.
I will look into this as I have done as much research as I possibly can online so would be good to listen to it instead.Thank you for the advice
I listen to them on my iPhone (if you have an an apple iOS the purple ‘Podcasts’ app will already be installed on your device) but you can also listen to them on android phones or web browsers - if you just google the name of the podcast they’re usually hosted on a website as well. This article explains the basics of how to access Podcasts www.theguardian.com/.../how-to-listen-to-podcasts-everything-you-need-to-know I have to say I’m quite addicted to them - I find I don’t have much time to read anymore since having my son so they’re a great way to get some information in while you’re doing something else like making dinner!