Being a parent isn't easy, and being a parent with children who have extra needs and disabilities puts an extra strain on you and your family.

For me, that strain is tenfold.

Lola's behaviour is very exhausting which is a result of significant anxiety. She displays this behaviour with violent outbursts, uncontrollable hyperactivity, and such poor attention and concentration that she cannot focus on anything, unless she has help with medication. I'm not going to turn this into a medication post but the meds that she is on has allowed us to visit places we wouldn't normally be able to, allowed us to spend some family time having meals out. Or taking them all to a park, albeit very rarely and for shorter periods than we would like but a visits a visit nonetheless.

But this behaviour is constant, consistent and totally neurological! So the strain that is created from this has a massive impact on the whole family.

So when I found a lady called Victoria who offered a place for Lola at her special education needs dance class, ‘Chance to Dance’, I grabbed it with both hands! For one hour every other Saturday, I took her and dropped her off, I was able to run a few errands in that time without her. Taking things to be posted, or picking up prescriptions from the chemist. It was the little things, and it helped so much! I used to turn the music down on my stereo and just drive! 40 minutes of sheer silence, a cup of tea from the local cafe was bliss, I mean I found those 40 minutes every other week the most anticipated of my life. It doesn't sound very much, and sitting in my car doing nothing? Sounds a bit dull but wow the things I mentally achieved in that time!

In silence!

It was heaven!!!

And then they offered respite sessions.  Once every four weeks they took the children out on days out, these children got to access things that they maybe wouldn't have been able to access with their own families for a number of reasons. I looked forward to these sessions so much, it was three, four or five hours of respite we desperately needed. Not just for us, but for the other children too. They got to go places, eat out, and spend time with us.

We can go months and sometimes even as long as a year without going out and spending an evening without the children. Our life is so mapped out that we never factor ourselves in for some time together and it's something we really must work on. When Chance to Dance play scheme came to an end, I felt a bit lost; I wondered how I was going to manage without that time.

But they didn't close down, these very special people decided to offer personal respite! With lots of different options and even though I've yet to use this service I know for a fact It will be something that we access soon. There have been Christmas camps, and this year a summer camp. I put Lola's name down for a whole week. It was risky because she's been known to refuse and I don't like to push her, but day after day, morning after morning, she got up and dressed without so much as a moan and we set off bright and early. She spent the whole day there from 9.00am-5.00pm and she absolutely loved it. She was so good, and took part in everything. Apart from one day where I didn't give her her meds and she had a bit of a hyper day, and didn't have her listening ears on! (I didn't make that mistake again) but what's more, I got to take Connie and Stanley on days out. We went to London, yes LONDON and we spent a whole day walking around Kew Gardens without a care in the world! I will remember that day for a long, long time!

One day Stanley had his friend round and I took them out for the day, he got to socialise and be free and unrestricted and in control! He had such a lovely day! I would never have been able to do these days with my fantastic children had this camp not been on offer!

I'm so proud of how far along Lola has come, and how much she's achieved, specialist teaching makes all the difference, I mean at her mainstream school she barely got on stage for a play, or took part in their assemblies, she was so overwhelmed at one play that she was quite visibly stimming in the corner. Chance to Dance have provided a platform for Lola, one that she can jump on and be herself next to people and children who "get her" are more like her and completely accept her. She feels comfortable, and she is more relaxed. At the beginning of this year she even got on stage at one our biggest theatres and performed in front of hundreds of people. Including the Mayor of Reading, some achievement!

So if you live near anywhere that provides a service like this, get your child's name down! It's invaluable! It's comforting, it's inclusive and what's more. These fantastic volunteers do it for love, not money, they're motivated by success and understanding, and they are working towards a better future for our children for inclusiveness and acceptance.

For that my family and I and all the families who are a part of this wonderful dance group will be forever grateful.

Yesterday they held a family fun day after the last session of a summer camp that they held this week. Everything was free! Food, drink, bouncy castles and slides, the Mayor once again attended. It was a fantastic day and the children all took part in a relaxed performance of what they had been learning this week!

So from all of us to all of you, thank you from the bottom of our hearts!

PS please don't ever close down.....


Find our more about Jodie on he blog page Autism with lots of love and affection