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 to twin boys who are four and a half, they have recently been diagnosed with ASD after a year wait for an assessment. We have been very lucky with the support we have been getting but the waiting around in limbo is hard and stressful at times.
The main thing I can tell you is you are certainly not alone as much as you feel it! Is there any support groups near you? Any sensory or SEN sessions you can take your little boy to?
Our boys thrive on their routine and can struggle with changes to this, they use visual cards in their playgroup setting which has proved very effective.
Is your little boy in a playgroup or nursery setting?
Laura :-)
Hi Laura
Thanks so much for replying, so sorry I’ve taken so long to respond. That’s great that you managed to get a diagnosis and support so quickly, it sounds like your little boys are thriving with the right structure, which is so good to hear. There seems to be a real lack of SEN playgroups where I live so I’ve really struggled to find any local support for my son (or us!) but we’ve paid for some private speech therapy and have recently started using PECS which has made a huge difference to us. My son isn’t in nursery but is with his grandma two days a week while I work. (Frustratingly I’ve been told that by not putting in nursery I’m ‘holding him back’ by some people but he gets so much quality one-on-one time with us and the rest of the family I can’t see how that would be worse than him being in a nursery with a lower staff-child ratio? But that’s by the by!) I think in a wider context fighting this sort of ignorance makes me less willing to socialise with other families with neurotypical children, and so the isolation seems to perpetuate, although I acknowledge a lot of that is down to how deeply sensitive I feel about this whole situation at the moment. Did you find those feelings lessened with time? I feel almost aggressively protective about my son at the moment, which I know is quite a natural maternal instinct, but knowing that the world is going to be that more challenging for him than for his peers just makes me feel so defensive!