FINDING MY VOICE 

& LEARNING TO USE IT WISELY

 Well it's been almost 5 months of my blogging silence. It has been an interesting time since December 2013. I have entered further into the "Autism Community" joining local groups. This was a very brave moment for me to actually pick up the phone & ask for support/help/advise. Something throughout my life I have always found difficult to do? But I recognised we had arrived at another place in our journey.

We had been given the diagnosis in October 2013 that my eldest daughter had Asperger's, High Functioning Autism with other difficulties. I had educated myself, my husband, my daughter, her sister, friends & family about Asperger's. I had helped my daughter to embrace our new understanding of her differences positively. We all now understood why so many things in my daughter's life had caused her great anxiety. She found lots of things we could do so hard & found at times unable to cope with these demands. 

It had become crystal clear it was now time to ask for some much needed support. I joined a group called SNAP. It organises youth clubs, holiday clubs, social events for families & courses for parents / carers for children who have disabilities in our community. Children & families similar to ours. I also joined our local branch of the National Autistic Society.

SNAP invited me to a free course,"Living with Autism", for 6 weeks in the evening. I felt it would be good to be with other people just like me, so I went. I was very anxious at the first meeting. I really pushed myself to go & then speak to about in a room of about 20 others. I was suprised just how much I had already learned myself & just how much information I had to give others! 

It was a difficult course emotionally at times. I did go through a series of emotions, from sadness, to anger, to acceptance. My daughter was the eldest out of all the other children being discussed. The other parents children were much younger & were already getting support within their school. I did feel very alone in that my daughter's diagnosis had come at the age of 14 years. I did feel a little on the edge of things again. Not quite part of the group. There were only two girls that did not attend mainstream school, my daughter one of them. I pushed that to the back of my mind & decided to talk & listen & learn regardless of our different circumstances. Lots of similarities with our children filled that gap for me. I did feel part of the group. 

We discussed using social stories for prompting routines, such as showering, travel etc. We used photo images of all the steps required for having a shower. We stuck these into a scrap book for reference. My daughter helped to create this visual aid & she enjoyed doing so. It has made showering much easier as she can memorise the sequence of the photographs. Also she enjoys me using a simple technique of pressing down heavily on both her shoulders if she is feeling overwhelmed when we are out & about. It grounds her & calms her. 

One of the leaders said something which at first I felt really angry about. I had to bit my lip to be honest. She said," You will never get people to understand Autism, so you must help the individual to be as independant as they possibly can be in this world". I did feel like this was a huge body blow to me & rather pesimistic & harsh!! But recent events in my life have made me realise it is so hard for others outside of your own four walls understand your childs behaviour. I feel I am now starting to  know understand her statement. In my caring role to my daughter I must continually teach her vital life skills, so she can live as independently as possible. My role as her Mum is to love her to the moon & back!! She is totally adorable, loving & beautiful. Hugs are a major requirement in our day!

I also attended a coffee morning run monthly by the local NAS. I was invited by a lovely lady I had met on the course & we attended together. Again I found a huge VOICE, telling our story so far. I was suprisingly thanked by a few other ladies who said it was good to hear me speak!!

To be honest on my car journey back to pick up my daughter from her school, I was on a high. It felt it was so empowering to share all what I have learned. To see other ladies eyes who understood me, without explanation. The nodding heads of acknowleding our similarities. The connection I felt with those complete strangers was very powerful & comforting.

A few days after I began to over critise myself. Was I too loud? Was I too pushy? Was I too knowledgeable? Was I coming across like a big shot with a big mouth? Just who did I think I was?!

I felt vulnerable being good & worthy.

I felt vulnerable being clever & knowledgable.

I felt vulnerable being too big for my own boots.

BUT

It felt good to connect.

It felt good to belong.

It felt good to share.

It felt good to not feel so alone.

For me it is now about finding a balance, where I am comfortable with my new voice & all the information I have aquired over the last two years. I feel I should be wearing a set of green "L" plates for just passed!

I must never forget the need for my own support. I must listen to others & be open to new friends along the way. 

I must also be present for my younger daughter & to try to offer positive advice for any worries, frustrations, questions she may have? She is a very sensitive, caring, hard working, funny & beautiful. She has a huge heart & shows emotional maturity beyond her years at times? She has her own journey & I must remember that!

My husband struggles, sometimes it all gets too real for him. He can only take the research & information so far. He listens to what I say & will read bits & pieces. But on the whole he is about helping his daughter & family in a loving & practicle way. We are thankfully in a better place after some very bumpy roads prior to diagnosis, where life was full of frustration & misunderstanding. He attended a local monthly support group just for men, which I finally managed to find! It was very hard for him to show up, but he did. It was a very brave move for him. He has attended one meeting to date. If he needs an understanding ear for a few hours with men in a similar situation, he knows he has found somewhere he is welcome to share whatever is on his mind. It is important for men to have  time to tell their stories as fathers. 

  I would like to do my next piece of collage art to celebrate my new voice. Maybe a good title would be, "No more silent speaking"? We shall see?!! 

It has both a difficult few months but also a few months of clarity, joy & new connections in my life. Grateful & thankful for this new chapter for us all. 

Many thanks for reading my blog post today.

Until next time, take care.

xx