Perhaps it is something that might not occur to some, the concept of not ever letting your child go out to play with their friends? That facing the reality of perhaps never having those arguments with your child over why they can’t stay over night at their best friend’s house, would be a debate that I would long to have with Trinity!
We wonder as parents how to do the best for our children and we want them to enjoy as many fun opportunities in life as possible!
For Trinity gaining access to certain opportunities is complicated and needs careful planning!
As parents of a child who has ASD, it isn’t always possible to give Trinity the opportunities she needs as often as she might want or need them. This can be sad and frustrating for her and us too!
It would be all too easy to just sit and cry and feel sad all the time over what we won’t get to experience with Trinity. So we have to remind ourselves that we are doing the best we can and that there are different things Trinity will experience that will give her and us joy!
Today is a new day with possibilities, however narrow a path we walk on, and sometimes it can feel like there is only room enough for our foot width. But if we don’t keep moving and looking forward we might lose our balance and fall off!
That is me in realistic yet positive self talk mode! Is it a case of ignoring our pain and difficulties, not in the slightest, as that is unhealthy. However it is really important to do more than survive, to be able to embrace each day with courage and strength takes a deliberate decision, for me embracing the journey of life on the spectrum in all its diversity, beauty, difficulty and joy is so important!
However add a Pandemic to the mix and there we have a whole new level of anxiety and potential difficulties to overcome!
So what do we do when we are all couped up together in a little house for the best part of 18 months! We did just one more today…
The thing is Trinity, myself and Daddy too were very distressed at times! However it was exacerbated even more for Trinity, who has no concept of time, or understanding why the activities which made her life so bright, all stopped so suddenly! It was so awful that Trinity couldn’t even access the park anymore.
Unlike you and I she can’t ask,
“When are we ever going to get to go out to play again?“
“Trinity couldn’t even access the park anymore.“
Although things have relaxed a little and we have started to go out into town, this wasn’t really satisfying Trinity’s need for interaction with multiple people objects of interest and different environments.
When school started face to face learning again Trinity found it very hard to begin with but it didn’t take long for her to remember how much she loves Uned Myrddin (Specialist School).
However, sadly for Trinity even being at school presented new difficulties, there her favourite things were no longer aloud due to important Covid guidelines, put in place to minimise the risk of infection.
Hydropool was finished, Horseriding and swimming not aloud! Poor Trinity did not understand and even stubbornly stood at the door to the pool and attempted to open the door after leading staff to her favourite place.
This made for a very upset little girl! We are so grateful to the wonderful staff at Uned Myrddin, who have supported both Trinity and us as a family through what has been a ridiculously difficult time!
So what now? Well the after effects of lockdown for us are still very real.
We are anxious all too often, continually sleep deprived often to the point of exhaustion. There was no break and there were no hands that were allowed to help! On top of all this I work in Education and as an essential key worker was required to work both from home with Trinity present, whilst I created all kinds of bespoke digital resources and videos for Google Classroom (often starting work recording after 9pm when Trinity had gone to sleep).
We got to breaking point and needed time out to sleep, shop and go to the bottle bank!
Trinity was in desperate need to have access to the similar opportunities that every child enjoys once they get to the age of seven,
“Play time, fun times and activities with friends!”
I often catch Trinity looking out of the window at the children playing in the street and I sometimes imagine her saying,
“Can I go out to play?”
Although I wouldn’t want Trinity to play in the street as it isn’t safe, the fact is Trinity cannot play at all without specialist adult supervision to keep her safe. We kept hitting a brick wall trying to find specialist provision for Trinity.
Then something amazing happened for Trinity and us all:
“Breakthro!”
Is that a spelling error, I hear you say? No it is not! Breakthro is a charity based activity centre and Holiday play scheme for children and young people with disabilities. These places are like gold dust and the waiting lists to gain access to the provision is very long! We had an opportunity which came up at the last minute and grabbed it with both hands!
Trinity just had her first session there and came out with a smile so wide she could’ve lit up the whole town!
It is a wonderful thing to see your child who has been struggling to socialise and re-connect with the wider community, come out of her first activity club session so happy having made friends and cakes!
See the video clip below of Trinity’s response to the cakes she made at Breakthro:
Mummy and Daddy even got to go out for a lunch date at Sloppy Joe’s!
Can Trinity go out to play?
Yes! She finally can, in a fun and safe environment!
Today, today, was a great day!!!
Embracing-Autism 