Soldiering on!

The last couple of weeks have been very varied to say the least. Last week I was struck down with horrible Tonsillitis on top of hayfever, on top of a cold. It was pretty nasty. When I say struck down, that’s not to suggest I actually lay down at any point, in fact, it was one of the busiest weeks I’d had for a long time and there wasn’t any time for me to have a rest. I know that all mums have the problem that they can’t really take a “day off” as such when they are unwell, and have to carry on regardless. I do think though that having a child with disabilities makes it even harder. If it was a case of taking him to a toddler group at the local children’s centre then obviously I would have just changed my plans and stayed at home with a DVD to entertain Thurston. Unfortunately, last week coincided with an appointment with a continence nurse, Thurston’s Physio and Occupational therapy group, a Team Around the Child Meeting for his transition to school, his parent teacher consultation at nursery and a Speech therapy session. I didn’t really have any choice in the matter and had to stick to all these appointments to make sure that Thurston didn’t miss out on any help or support. Of course, this meant that I was a complete wreck by the end of the week, not helped by the fact that Thurston’s sleep is dire at the moment. On average, he is going to sleep around 9pm, waking for formula at 10-11pm and getting up for the day between 1-3am! It’s not really enough to get by on, but even less so when you have infected angry tonsils!!

The appointments generally went well this week and everything seemed very positive. I was really reassured by the visit from the continence nurse. She decided that due to his age and diagnosis, Thurston’s lack of awareness in the potty training area was within the normal ranges. As with many milestones with Thurston, he is expected to get the hang of potty training at his own pace, even if it is later than neurotypical children. I’m so pleased i don’t have to push the issue as I really struggle with potty training at the best of times and I had absolutely no clue of how to approach it with an Autistic child. For now, we are going to carry on with pull-ups but encourage him to use the potty or toilet if he asks. The nurse also helped me to claim for free pull-ups for Thurston which is a service available to any child who is over the age of 4 and still using nappy products due to disabilities. It’s not really a topic that people like to discuss and it did involve a lengthy chat about Thurston’s poo-type where I had to choose from a brochure of pictures of other peoples’ poo! I hope one day Thurston will appreciate all the bizarre things I end up doing for him! Even though it’s embarrassing, I’d encourage anyone whose disabled child is delayed with toilet training to get in touch with a continence nurse. I feel as though a weight has been lifted just by talking to someone ‘in the know’ about it.

Thurston and I have been going to a ‘School Starter’s’ Physio and Occupational therapy group for 4 weeks now at the Child Development Centre. I’m so pleased with the progress he is making there and it’s really giving me confidence that he will be OK at school in September. His gross motor skills are coming along nicely and he is actually jumping on the trampoline really well with both feet in the air at the same time which is a triumph! To start with I dreaded going to this group to be honest. I’m not really a baby-group type person, and struggle with the enforced singing and nursery rhymes. However, I’ve started to really enjoy it now and it’s so lovely to see how proud the children are of themselves when they achieve something they couldn’t do the previous week. The parents there are the complete opposite of ‘competitive’ parents and it’s lovely and refreshing for everyone to be happy for another child’s achievements instead of comparing them. There’s no point in comparing them because they all have different disabilities and different strengths and weaknesses, and all the mums realise this and are happy for the other children regardless of their own child’s abilities. I think this is a really important lesson in motherhood, because even in children without disabilities, they all do things in their own time, and being competitive about raising children really can make motherhood miserable. I think everyone should come and visit our little group one day to see how it’s possible to be happy and proud of other peoples’ kids!!

The Team Around the Child meeting at the school was much easier than I expected and my voice held up for the whole time which was lucky! I’d written down some questions on my iPhone before we went in so that I didn’t get too flustered in front of all the people. There was our Key Worker (who has now OFFICIALLY closed our case so no need for her to be at the next one!), the Specialist Teacher, Welfare Officer, Inclusion Leader, Nursery Teacher, Head of Key Stage 1 and Thurston’s new one to one Teaching Assistant for September. It was lovely that Alex could make it too, as he was laid up from his 2nd spinal surgery last time and  I had to go it alone! All our questions were answered about his starting school in September and I don’t have any major worries about it at the moment. The only thing I might struggle with is encouraging him to eat fruit over the Summer so that he will be able to eat some at school snack times! His Organix gingerbread men might tempt the other children away from the grapes and carrots! I do worry that people think I don’t want Thurston to eat healthily when it’s completely the opposite. I spend most of my time worrying over his nutrition, and even took an Open University course last year to try and learn more so I could help him. I make sure he has his specially fortified formula and prescribed vitamins every day, but he really struggles with foods that aren’t dry and boring. I know this is true of lots of little ones with Autism and it is a worry. I try to make his chicken goujons and beefburgers homemade whenever possible, but I am really struggling with encouraging him to be more adventurous with his food. Since he has had medical issues with his swallowing as well, I do wonder if he will ever move on to different textures of food, and I’m not really sure where to look for advice.

Thurston had a great time at his Speech Therapy appointment and steamed through all of his tasks without a hitch. It did occur to me that since he’s been having Speech Therapy from the age of 1, that he has simply learned ‘how to do speech therapy’! I’m no expert, but I wonder if because he’s been doing the same tasks over and over for years in the same room, if perhaps he has actually just memorized the routine of the speech therapy sessions!! Most of his talking and phrases come from copying others, and is very echolalic, so maybe he has mastered speech therapy in the same way?! How sneaky!

After the busy and poorly week, I could have done with a weekend in bed, but instead I soldiered on to London for the day on Saturday to celebrate my best friend’s Hen Day. I took every tablet I could get my hands on, and it was definitely worth it! It was quite a relief to be away from the children for a day actually, and somehow even though we went all over London to Kentish Town, Bloomsbury and the South Bank, went bowling and to a circus, I feel like I got more rest that day than I had all week. We had a fantastic day and it all went without a hitch which I was pleased with as Maid of Honour! It was quite nice to just be me for a day instead of a mum, and chat about all kinds of nonsense with some lovely girls. The Cantina vintage circus on the South Bank was really magical and right up my street. I’m so glad I forced myself to go, and even though my tonsils didn’t thank me for it, my mind certainly did and I felt really invigorated afterwards!

The rest of this week has mostly been spent taking care of Thurston as he has been what I can only describe as ‘iffy and suspicious’! He hasn’t got a temperature or been sick or anything but he just looks ‘off-colour’. His eyes are sore and he has a mouthful of ulcers which are really upsetting him. It has also been 5 days now since he last did a poo so that can’t be nice! He has been really distressed and keeps sobbing whilst muttering “what’s goin on?”, it’s terribly sad.

Tomorrow he is going to spend the day with his Dad who is something of an expert at baby massage and so I am sure he can get the poop out of him!! I am going to take my Driving Theory Test which I have zero confidence that I will pass, but it’s worth a shot! Wish me luck!!

Thanks for reading,

Hanj x


9 thoughts on “Soldiering on!

  1. I love your blog! your kiddo is absolutely beautiful!! I the pictures you catch of him are amazing. The things that parents of children with autism have to do are sometimes bizarre! haha they often become “poop” experts by the time their little ones are older! You are a great mom doing everything you can for him! Unfortunately, bathroom and food issues are prevalent in almost ALL of the kids I work with =( . (I am an ABA therapist) Poor little guys struggle so much with the basics. A lot of my clients also have celiacs disease or a wheat/gluten allergy and quite frankly the “gluten-free” alternatives to their foods are pretty gross. I wouldn’t want to eat them either! haha I know some parents experiment with food coloring to try and make simple foods a little more “exciting” and appealing to their kids. But each kid is so unique that sometimes food colorings and dyes make them sick. Good luck!! =) thanks for writing what you do!

    1. Thank you for your lovely comments! Food is definitely an ongoing struggle for us. I will just keep encouraging him to play with new foods and hopefully one day he will feel brave enough to try some new things. Thank you for reading my blog, I think he’s beautiful too! Hannah x

  2. What a gorgeous son you have! I so empathise with the sleeplessnes and multitude of appointments esp when ill. Poor bunny. Get some help if you can and get some rest. We now use a weighted blanket at night…it buys us a few more hours each day. Worth every penny. Hayley x

    1. Thank you Hayley. He is gorgeous!! I have heard about the weighted blankets, are they too warm in the summer? I’m feeling much better now, just stuck with hayfever still, but then I live next to a rapeseed field!! Glad you are getting a bit more sleep, it’s so important. Hannah x

  3. Hi Hannah- I’m a newcomer. I was recommended your blog by your Dad at Brocante this weekend. I can’t offer much in the way of support other than to say that I looked after a boy with autism along time ago and he wasn’t fully potty trained until about 5. It was like something switched in him overnight and he totally got it, which would have been helpful to know when we spent months trying to ‘train’ him when he was 3. Hope you feel better soon!

    1. Hi Kelly! Thanks for reading. I’m definitely not going to push the potty training, I think Thurston will definitely get there in his own time. There’s no rush!! Thanks for the well wishes! xx

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