An Introduction....

Hi my name is Joanne. I’m a 33-year-old full time working wife and Mum.

The purpose of this blog is to share our journey and its up’s and downs with other’s. As parents of two; a 14-year-old son and 7-year-old girl with Autism life can be challenging. I found the best support both physically and mentally is knowing your not on your own, sharing experience’s good and bad with others and gaining ideas and advice from people who understand.

Hence my blog.

To protect my family’s privacy, I have changed their names; so for the purpose of my blog my son is called Matthew and my daughter Louise. However, I hope one day that they too will it helpful and may decide to be open to the world.

So where do I begin? Where does our story start?

I could go right back to when I met my husband, I won’t; I could probably write a book from then to now! (He thinks this makes it sound bad but honestly that’s not my intention).

Instead I will begin with the early years of my daughter’s life.

Despite a difficult birth the first year of Louise’s life was fairly straight forward. She met all her early milestones, she fed and slept well, she sat up and crawled and walked by her first birthday. The only difficulties we faced was her diet.

It was clear very early on whilst weaning her onto solid foods that she had issues with her stomach. After our first holiday abroad when she was 11 months old, she suffered terribly with her stomach, after a month of continuous diarrhoea and being told its gastroenteritis our Doctor finally suggested removing gluten from her Diet. It was amazing after a week of having no gluten she had the first solid poo she had ever done! Immediately we did what most parents do and began reading up about gluten free diets and planning meals appropriately.

But it wasn’t that simple Gluten is in everything and we soon realised that we really needed to know exactly what we were dealing with. The next few months were hard, we had to put her back onto a full gluten diet for three months before the hospital could have a biopsy done to determine what the issue was.

By that point I was working from home as a childminder, looking after other children whilst being at home with Louise too. The perfect Job for me! I thought. So, on the day of her biopsy my husband took her to hospital, where they put her to sleep and took a sample from the lining of her stomach.

As most parents will know waiting whilst your child is put to sleep for a procedure fills you with anxiety, I was working so, kept busy but waited desperately for the call to say she was awake and ok.

The results came back and she was diagnosed as being Gluten intolerant. Not Coeliac but intolerant, they explained that her stomach lining was damaged from the gluten and that she needed to follow a gluten free diet to allow her stomach to heal but that as she gets older she would be able to eat small amounts as long as it was controlled and managed. The good news was that as she gets older, she would learn to manage it herself.

So, we changed our eating habits and managed her diet well. Over the next year or so a few other health issues arose. Louise suffered badly in winter and frequently became ill with coughs and colds. Each time suffering badly and eventually getting pneumonia. In the end we were advised by the dietician to remove dairy from her diet as well (due to it causing an over production of Mucus) and she was given three inhalers, two preventors (green and brown) and one relief (blue).

She also began walking with her feet turned in causing her to trip and fall especially if she ran. So, yet another trip to the hospital where they examined her and x-rayed her hips. Internally rotating hips, they told us. Hopefully she will grow out of it and they will align themselves as she grows but if by the time, she is 10 they haven’t she may need an operation to break her hips and re-set them!

Fingers crossed the older she has gotten the better they have got so we are hopeful now it won’t come to that.

So, let’s fast forward to where we are now; then I can tell you how we got to be here.

It’s now the beginning of January; I own and manage my own nursery. We have an Out of School Club, but Louise doesn’t cope well with it, so we try to minimise her being there. My husband works on site’s and starts at 7 in the morning and doesn’t usually get home till 5ish. Our son Matthew is in his third year of high school and pretty much sees to himself.

On the Thursday before Christmas (19/12/19) I received a call whilst I was at work my own from the Neurodevelopment team to say they had reached a decision.

Louise Has Autism!!!

Bang! It doesn’t matter how well prepared you think you are, or how much understanding of it all you think you’ve got it hits you like a brick! Hard!

I remained calm and tried not to show my emotion on the phone as I spoke to the lead assessor. She was lovely, asked if I was ok? And what my thoughts were? She explained how they had reached the decision and offered us a face to face feedback appointment.

Yes, definitely we would like to speak to you together face to face. We arranged an appointment for the following Friday. I was shocked that we could get the appointment so soon and in between Christmas and New Year but relieved we wouldn’t have to wait again.

I tried to ring my husband, but he didn’t answer he was working. I was flooded with a hole barrage of emotions, relief, grief, anger, sadness (the list could go on) that I couldn’t put into place. My friend (and employee) was in the staff room and had realised what was happening. As soon as I got off the phone, she gave me a big hug and I just cried. I couldn’t put it into words how I felt. I was happy that people could now understand and support her, but those words just felt like a slap in the face. My baby, my beautiful baby girl all the things I had dreamed of for her now came into question. How will she cope? How will she manage?

Louise is a strong and clever girl, that works in her favour everyone tells us. She will be able to learn coping strategies and social techniques.

Yes, Yes she will but that doesn’t stop her daily life being a big confusing struggle! She has to work twice as hard to understand, she doesn’t understand how she feels but yet she feels it twice over any other children continually throughout the day.

She is clever but being clever means, she is also aware! She knows that she is different and doesn’t have many friends even though she desperately wants them.

I just want to her to be happy, have friends and hobbies just like the other children do!

The last couple of weeks have rushed by with the madness of Christmas, my mind has been continually wandering, thinking. I’ve done some reading which has helped and I feel like I understand her a little better. I’m more aware of what I say and how I say things and I cringe sometimes at the things or way that others talk to her as I know what will come later.

It’s time to go back to school and I find myself exhausted already, mentally preparing for what will come and trying to prepare her at the same time.

As her anxiety builds in preparation for going back to school, she relives past events from the previous term and worries incessantly. She becomes more and more concerned with events that might happen and plays out scenario’s in her head and in her dreams. She doesn’t want to go anywhere, do anything or see anyone.

So, its Sunday evening and we prepare for the inevitable meltdown over tea, (Roast Gammon tonight) which she loves but will tell you she doesn’t. Then the arguments start as we go through the weekly ritual of planning the weeks meals and putting them on the meal planner. I clean off the weekly planner and update it for the coming week with exactly what’s happening on what days and with whom, so Louise knows exactly what’s happening.

Routine!!!!

A massive must!