The wheelchair has been great. Pushing him in it is much easier than the buggy he was too big for. And sometimes it helps by providing a quick explanation to strangers when he has challenging behaviour. I suppose because with a wheelchair, disability is quickly visible. But it took a while to get used to having it...
Mum to Brody & Sydney, lover of sleep and eating bad things. Brody has an undiagnosed genetic condition, GDD, autism, epilepsy, hypotonia, hypermobility...and the best smile EVER. I blog at Brody, Me & GDD to keep sane & because it's good to get it all out (& even better when others "get it"). Also seen tirelessly campaigning for Changing Places toilets and working as PAMIS Changing Places Campaign Co-ordinator in Scotland. Website: www.brodymeandgdd.com
It was only as time moved on -- when we realised that Brody had various disabilities and I had the opportunity to meet more doctors, therapists and mums walking similar paths-- that I discovered sensory issues was a thing. And that it was known to many as sensory processing disorder (SPD).
15/02/2017 17:42 GMT
The sad thing is I don't even feel confident anymore going to friends' houses with the two of them. I can't sit down and leave them to wander and I can't follow them both when they go in different directions. Most friends don't need stairgates anymore or don't have to worry about things like hot drinks being grabbed or breakables being within reach.
23/01/2017 16:11 GMT
I'm tired of being like this though and I'm determined to change. Even though I fully admit I am currently guiltily eating my way through Christmas all the way to New Year. I wish I could say its making me feel better. The reality is it's not. I am just greedy. And adding some extra pounds/rolls to my collection.
22/12/2016 14:04 GMT
Now that Brody is nearly 5, I have finally got used to the fact that Global Development Delay (GDD) doesn't mean "may catch up" for us. It's forever. And because he is still primarily undiagnosed, despite an autism and epilepsy diagnosis (as well as a few others), GDD seems to be moving on to a new "catch all" term - learning disability.
09/12/2016 16:32 GMT
One issue that affects us daily is a lack of fully accessible toilets, which is why we campaign for Changing Places toilets. Something in all honesty, we shouldn't have to campaign or fight for. We invest so much of our little spare time trying to convince Scottish companies to do the right thing,
23/11/2016 12:45 GMT
It's actually quite depressing how little the world cares about accessibility and accessible toilets. There are so many campaigners doing all that they can to encourage and promote Changing Places and Space To Change facilities.
19/10/2016 11:17 BST
Those of us that are will probably know that pregnancy and infant loss awareness week is held annually from 9th - 15th October. I remember discovering this as I miscarried 27th September 2013 and the following week I thought it was apt that I should see so many reminders on Facebook of miscarriage.
13/10/2016 17:17 BST
10/10/2016 17:25 BST
As he gets older, this danger awareness thing - well, to be honest it just gets more frightening. He is taller and stronger and physically trying to prevent him from hurting himself - intentionally or unintentionally - can be really hard.
05/10/2016 17:46 BST
When Brody's behaviour turns like this, it's hard not to feel like a rubbish parent. Because what we want foremost is for him to be happy. And that mummy guilt, it can really weigh you down. It's hard not to feel pissed off that things aren't straight forward and envious of friends who have the life you pictured when you first saw the positive sign after peeing on a stick.
03/10/2016 14:02 BST
For me, school is a significant milestone and another one of those doses of reality that pop up once in a while to remind you that life isn't quite straight forward - like birthdays, Christmas and important hospital appointments.
26/09/2016 12:42 BST
If you hate the special needs price tag as much as I do, please shout about it. Please make businesses aware that this is unacceptable. Please be part of making the change that we all need. Be bold. And be loud! Use people power. Use social media. Shout from the rooftops of Twitter and Facebook.
10/08/2016 15:53 BST
Unfortunately, there isn't a magic cure for many of us. "Wide awake club" has no age limit, medical care during the night doesn't just disappear (I wish for you that it did) and well, sometimes neither does the worry. No amount of sleep could cure the tiredness we feel at times.
03/08/2016 15:16 BST
Until we had Brody, I lived in a disability free bubble. I admittedly didn't spend much time thinking about disabilities and I certainly didn't know that 6000 children are born every year with a genetic condition that is likely to remain unknown. Fast forward 4 years and I am only too aware of this.
28/07/2016 15:08 BST
A child who is mentally 12-14 months old in a four-year-old's body is normal to us. But it's difficult for others to understand when his disabilities are - at first - invisible. Because he appears to them to be a typical four-year-old boy. I suppose, apart from the occasional what ifs, this is the hardest part. When other people get it, it's truly a real tonic.
18/07/2016 17:20 BST
When it comes to pass-remarkable comments to do with my parenting, I've tended to let them go in the past (okay, I'll admit I may have fetched my imaginary voodoo doll once or twice...). Let's be honest, pretty much all parents encounter them every so often, be it for giving in to a tantrum "too easily" or co-sleeping on a bad night.
11/07/2016 14:49 BST
07/07/2016 10:51 BST
When you have a baby one of the many things you don't expect to use indefinitely is nappies. You look in to the not so distance future and envisage *the joys of* potty training and eventually a nappy-free life.
28/06/2016 12:55 BST
When your child has epilepsy, it is a constant weight on your mind. Without fail, the moment that weight eases off, a seizure will happen - just to make sure you know it's still there. It's thoughtful like that.
21/06/2016 17:37 BST
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