‘Look, weather,’ said Freddie to his big brother, pointing out of the window at the hailstorm.
‘Look, weather,’ said Freddie to his big brother, pointing out of the window at the hailstorm.
Freddie missed Daddy this Monday morning, and Daddy did not want to go back to work — he wanted to stay home and play. So, all in all, I think Daddy Day Care Week was a great success.
No lectures for Mummy on Wednesday — whoo-hoo — so we all went off to Alton Towers. Despite a certain masculine reluctance to follow either the sat-nav or the road signs (‘we live in Staffordshire, of course I know the way, I’m sure we always go through Tean’) we got there in the end. Big sister and her friend disappeared as soon as we got through the turnstile and we decided, first things first, we had better take Freddie to the toilet.
Just beyond the entrance we found the most inaccessible ‘accessible’ toilet I have been in yet. We were warned, by a lady standing outside with her nine-year-old in a wheelchair, that it had no facilities for changing nappies or pads; she had had to lay her coat on the floor to change her child. We weren’t too worried by this as Freddie can sit on the toilet (with the aid of our trusty Potette Plus and the buggy pulled up close so that he can put his feet on the footrest) and will co-operate with a change of undies if necessary. Once inside the cubicle we found that the floor was wet and filthy, there was no toilet paper and it was really difficult to manoeuvre the buggy due to the way the door opened.
Freddie recognised the Cbeebies logo as soon as he saw it, and got very excited. Infact, by the time we had walked a few yards he was overwhelmed. The twenty minute wait for the ‘In the Night Garden’ ride was a nightmare, with Freddie, who doesn’t really understand the concept of time and waiting yet, shouting ‘I want a turn’, and ‘no!’ every time someone started to sing along with the music. On the defensive now, I was alert for disgusted stares, and whispers about my sons behaviour, but in a place full of stropping toddlers no one batted an eye.
He was hardly any calmer once our turn came and we got into the boat. Being obssessed with the Haa-Hoos he couldn’t wait to get to them and then didn’t want to say goodbye, but if the other families sharing the boat with us thought anything of it they did not let on.
After that we paid more attention to the digital displays at the entrance to each ride that gave an approximate waiting time, and chose the ones that had the shortest queues, alternating rides with the other acitivities on offer that did not require any waiting, and allowed Freddie to run around (the Charlie and Lola House and the Tree-fu Tom play area), or fiddle with things (the Nina and the Neurons lab).
The Something Special Sensory Garden offered the chance to do both, with things to ‘find’ inside ‘Spotty bags’ and plants to rub and sniff, although I think more could have been made of this — with a greater variety of plants with more varied scents and colours, different textures to explore, and more things that would produce sounds. Freddie was very happy to sit in his buggy and eat his lunch here, watching Mr. Tumble on a big screen; he seemed more settled now, less overwrought.
At ten minutes to four we rounded up Big Sister and friend and headed off, very glad that we had brought the buggy with us, as the monorail (along with many of the big rides) does not run at this time of year and it is a long walk to the car park. Freddie nodded off on the journey, and only woke up when he smelled the chips we bought on the way home.
Once he was tucked up in bed, Daddy and I talked over how the day went – what was good, what was not so good, what could we have done differently. Perhaps he was overstimulated at first and needed time to take in his surroundings and process everything. Perhaps we as parents need to make allowances for a processing delay when planning activites, take things slowly so that he can acclimatise, and give simple explanations of new situations by referencing things that are already familiar. I recommend holding these ‘de-briefing sessions’ in a big, bubbly bath with a bottle of wine!
Freddie has mentioned Cbeebies Land a few times since – I think he’d like to go back. Daddy and I have hatched a plan to go back to Alton Towers, too — without ANY kids.
Daddy Day Care Week got off to a rather hairy start with an unexpected trip to the doctor, after Freddie woke up on Monday with an alarming crusty rash all over his face. Rashes always send us into a tailspin, especially blistery ones, as a rash was the first outward sign of the bone marrow problems he had when he was born. The doctor admitted that she didn’t know anything about the condition, so she googled it. Then, after after examining Freddie from top to toe, glands, spleen, liver and lights, she concluded that it was a case of infected eczema aggravated by an uncontrollably runny nose and excessive drooling due to a sore throat.
Twenty-four hours and several doses of antibiotics later Freddie was already feeling a bit better, so on Tuesday’s agenda was a lads and dads visit to the barber — but Daddy took him to a different one! Oh dear. Freddie, totally unnerved by suddenly being required to sit and have his hair cut in an an unfamiliar place by a lady he didn’t know, made a gigantic fuss. The hairdresser was apparently very patient, but you can see from his fringe that she didn’t have an easy time of it. No, Daddy, haircuts don’t happen here, they happen about six doors down the road, with a different lady!
Then it was off to The Potteries Museum to see the Spitfire, as Freddie has been learning about Reginald Mitchell at school. His haircut trauma was soon forgotten in the excitement of running round and round the galleries, flitting from one thing to another like a butterfly. He won’t have taken much in on this visit, but hopefully if we keep making short visits he will eventually calm down, see how others behave in that environment and learn by example, and begin to take things in.
After picking Mummy up from uni there was just enough time to go for a cuppa in the posh new coffee shop in town, where Freddie discovered he has quite a taste for chocolate oat milk.
This week is Daddy Day Care week on Extra-Ordinary. Although it’s the school half-term holiday, Mummy has lectures as usual, so Freddie is in Tim’s tender care. This Mummy-having-a-life-outside-the-home lark may come as a bit of a shock, and to add to it all, Freddie has been a poorly boy all weekend. He hasn’t hogged the germs all for himself, though; he’s shared them around and now everyone else is coming down with lurgy, too. Including Daddy. Wish him luck.
One of the first pieces of advoce that the Community Paediatrician gave me was: ‘don’t make life hard for yourself. Just do the best you can comfortably manage.’
I have abided by that advice. I’ve done what fitted in with our already well-established style of parenting, our family dynamic, our day-to-day routine. I didn’t go chasing rainbows: if something did was a chore, or didn’t work for us, I didn’t pursue it. And I freely admit I did almost no research at all into Down’s Syndrome.
In the early days of Freddie’s life I had no time or energy for anything beyond trying to get some nourishment into him and praying that hjios bone marrow function would stabilize and become normal. Ignorance is bliss, I decided. What I did not know could not keep me awake at night, worrying about what might lie ahead of us. I would rather cross each bridge as I came to it, one step at a time. I didn’t want to project difficulties onto him that he didn’t actually have, just becasue I’d read they were common in people with Down’s. I’d already discovered that not all the, undoubtedly accurate, information in the Down’s Syndrome Association booklets we were given to read on the maternity ward applied to Freddie.
My gut told me I had to let Freddie himself be the one to tell me what Down’s Syndrome meant for him; and I might be less open to hearing what he was telling me if I filled my head with preconceptions. There were enough people in the world ready to make assumptions about him. He needed his mum to remain open-minded and questioning. I acted on instinct, just as I always do.
Perhaps my lovely Paediatrician (and she was a lovely, positive lady, as is her replacement) should have added another item to her advice prescription: ‘don’t compare yourself to other people.’
Because sometimes, when I hear other people’s stories, or read their blogs, I feel like a failure. Their children who have Down’s, at the ages of six, seven, eight or so, are toilet-trained, they can read and write, ride a bike, play sport, or do drama or ballet. At six my boy doesn’t do any of those things. he generally does not follow instructions, he does not always feed himself, he’s only just starting to get the idea that it is possible to put on your own clothes. Despite being first introduced to the potty at two, he’s still dry only about 80% of the time, clean much less. Our friends’ three-and-a-half-year-old is beginning to outstrip him developmentally.
I feel like I’ve let him down; taken my eye off the ball; been too lazy, too complacent. I read what other people are acheiving and I begin to question every decision I’ve ever made for him.
Should I have sent him to a mainstream school, even though all of the Primary schools in my area seemed either unable or unwilling to meet his additional needs?
Should I be ‘hot-housing’ him with his school reading books, going over the words again and again, night after night? O do I stop when his attention wanes, and wait until bedtime, when I sit him on my lap with his favourite Julia Donalson books spread out on the quilt in front of us, and read them aloud while he looks at the pictures, remembering to leave a little pause at the end of each line because he’s deveoped the habit of repeating each one back to me? Do I push functional reading at the expense of having the pleasure of sneaking in when he’s watching the TV adaptations we recorded for him, and hearing him substitute the line: ‘buzz off! That’s my witch’ for ‘buzz off! That’s my Lucy,’ as he stands between his sister and the dragon on the telly?
Should I be dragging him off the swimming and dance classes after school, when all he wants to do is chill out on our big, woolly rug, play with his toys and eat dinner with his daddy?
I never did such things with with my older children when they were small. I did what came naturally and enjoyed the time I spent with them. I never compared to their friend’s parent’s. I was never pushy.I let them just bumble about and be kids while they had the chance, they chose their own subjects at school, they’ll choose their own universities and courses, or not. I give them what help and advice I can if they ask for it, but otherwise don’t really interfere.
They were heading downhill for their teens when Freddie was born. My parenting style was already fixed, and I’ve parented Freddie in pretty much the same way I did them, with one or two small adjustments. They both ended up on the schools Gifted and Talented register. Freddie is in Special School. Perhaps they are what they were always meant to be, inspite of anything I did, or did not do? Perhaps the true value of my efforts will be to teach them that they are loved and cherished, and worth spending time with, just as they are. That, and some fun memories.