I have had a really really lengthy blog break mostly because of a privacy issue which I hope I’ve resolved. I considered starting a new blog altogether but I’ve decided to stick with this one because I don’t want to lose all my old posts. So I think I will just be a little bit more careful about what I share from now on!
Now that more and more of my friends & family have children, and especially now many of them are reaching school age, I hear lots of proud announcements of how brilliantly everyone is getting on at school or with their development. Of course, I’m happy to hear all about everyone’s parenting triumphs and I’m always interested in how all the kids I love are getting on. It does leave me with a weird dilemma though. What are you supposed to say when your kid isn’t doing so well?!!
Generally I don’t brag about my kids academic life anyway, I think they are fairly average children for the most part. They all have areas they are great in and things that they struggle with. However, it really is a different kettle of fish entirely when it comes to a child with special needs. I’m not sure a Facebook status which reads “if Thurston stopped slapping his teacher round the face for five minutes, maybe he’d learn more” would get that many ‘likes’, but that’s the truth of the matter at the moment. Whatever his wonderful helper gets paid, it’s nowhere near enough. They don’t tend to grade the class on how many laptops they’ve thrown across the room, but Thurston would definitely be top of the class in that subject.
If mothers like me do share these experiences, it’s always greeted with either sympathy or advice. Both of which are well meaning of course, but they both still leave me feeling a bit ostracised. I do try to share Thurston’s achievements but I know they sound trivial and almost jokey to some people. It’s hard to know what to do. As much as I love the updates from everybody, I can’t help but feel left out and a little wounded by the jarring realisation of what Thurston could be achieving if it weren’t for his Autism.
Another issue that crops up is regression. Thurston will often learn to do something and then due to illness or lack of sleep etc, will lose the skill for a little while. Because of that, I tend to delay announcing any new developments because I know that they can be lost just as quickly which makes me feel a bit of a fraud!
Thurston’s ongoing health issues present similar dilemmas. When people ask how he is, I’m pretty sure they don’t want the full story. During the past week for example, he hasn’t eaten for 4 days in a row apart from 2 bottles of formula a day because the sensation of a wobbly tooth was too upsetting for him. That makes me feel like the worst mother in the world. Sending your child to school on an empty stomach is not something that any mother wants to share. He is pale as a ghost, didn’t speak for days on end and fainted on a school run. That wasn’t really anything out of the ordinary for him. Lately Alex & I have found it all a bit hard emotionally.
We’ve got quite a few meetings and appointments planned for the next month and I’m really not sure what the outcome will be. It feels like we’ve hit a tricky bump in the road with Thurston’s health and education at the moment, and we’re losing a lot of his skills that are really important like eye contact and showing affection.
Hopefully he is happy in his strange little world where he speaks in Welsh and laughs at thin air. I hope he never realised his differences and just continues to find joy in all the tiny simple details in life that everyone else is missing.