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 we have a little girl almost 3 years and we are at the same stage as yourselves ( awaiting assessment). I feel the exact same way as yourselves the constant explanation and people insisting it’s just a stage. I know that there is a problem and a paediatrician and speech and language agree but the limbo stage is unbearable with no support. I feel so isolated and lonely as our daughter never gets invited anywhere as she has physical disabilities also. I would love to keep in touch and supporting each other via a virtual friendship as we live in North East England. Hope to hear from you and we can share this journey together.
Thanks so much for replying, I’m so sorry you’re having such a tough time too - please know that you’re not alone. I think battling family and friends to be taken seriously has been one of the toughest parts of the journey for me (and one set of grandparents is still in total denial) it’s just so draining isn’t it?! Having to come to terms with the fact your child is going to have more challenges than their peers is hard enough in itself but to be accused of being paranoid or negative while you get others on board has just been so upsetting. Thankfully I think I’ve got to a stage now where I’ve started caring a lot less about others’ attitudes to the situation - I can’t control them but I can control my outlook and what I do to fight for my son and get him the support he deserves, so when I can just focus on that I feel a lot better. Our son also has some physical issues as he’s nearly two and not walking (whether that’s down to a physiological problem or a lack of motivation I can’t be sure yet as we’re still waiting for physio) but I totally understand the extra challenges you’re going through. I’d love to keep in touch as well - I’ve unblocked my private message account on here so I think I can accept messages from anyone now if you want to exchange emails/numbers etc., but it looks like yours is restricted at the moment so I can’t send you one. (I think everyone’s is automatically set to block private messages when you sign up so you just need to update the private message tick box in your profile settings from ‘no one’ to ‘everyone’) Would be great to talk more soon :) Lucy