Tuesday, 17 May 2016

Why has my blog been very quiet??

Last summer I sat in the doctors surgery pleading for help. I couldn't cope. I was struggling to cope with my 3 year old. Nobody but Daddy M understood what I was going through. Daddy's way of coping was to shut himself away from it and do 1:1 more with J. I had had enough and needed help or support or both. When I seeked it from others I was told its normal behaviour for a 3 year old, and that J was a good child and I had it lucky. She is just a typical 3 year old. Then when we visited my parents my mum briefly planted a seed in my head, she had been observing her "unique" behaviour for a few days. (My parents are carers for adults with special needs) After an afternoon where she went through an entire bottle of hand sanitiser just rubbing her hands clean my mum asked could she be seeking sensory stimulation? 

I always knew there wasn't something quite normal with S, but I just didn't know what. The summer of 2015 was particularly stressful with very difficult behaviour so after that seed was planted, I googled. I researched and went to the dr armed with information. 
The girls came with me to the appointment and were not exactly calm. I printed of a checklist of children's signs with sensory processing disorder at different ages. She ticked about half of them which instantly raised eyebrows from the gp. He questioned why I did the check list which made me braek down, after he realised the stress I was feeling he listened and after observing S jump on and off the bed step over and over again he referred her but mentioned they probably wouldn't do anything due to her age. It was a relief. Someone was finally listening or doing what I wanted. 

After a settling in period at the new pre-school S had started attending (moved to a closer pre-school) we were called in to discuss her behaviour. They had noticed something not quite right too. We informed them of our concerns and they listened. They started to complete reports knowing they would be called upon and supported her. (In her first nativity they had a key worker sitting with her and supplied small toys for her to play with whilst sitting on the stage, as well as giving her a solo song - I knew nothing about this until the show! which was amazing compared to her previous pre-school where they had an Easter show. She was made to sit there with her key worker almost forcing her to sit still with a tight grip around her arm). 

Our little angel
After a few months waiting to see a paediatric doctor who specialises in behaviours we were seen in December. I even postponed my leg operation to make sure we made the behaviour appointment. It was this appointment which would decide if they would investigate or dismiss our concerns.

S was allowed to play with a play specialist whilst we listed our concerns. After we were done the play specialist gave her feedback on the play, it was very informative. She lined up everything. Playing with animals and figurines and was "living through the toys"  which we knew as she lives through her beloved "Jinxy" the cat. The doctor spoke to S. She wouldn't make eye contact with him, instead speaking to him over his shoulder. 

Jinxy met the Disney Characters before S did!
She was to be kept on the books. Again it felt like a fist pump moment as again I was being listened to and it gave me hope that we would get the support we so need for S to succeed in life.

The next step would be for a specialist to come and observe at pre-school. The specialist couldn't decide whether she needed referring for testing or not so put the decision in our hands. We decided to go ahead so we would know one way or another as when she turns 5 and we still have doubts we would have to start the whole procedure again.
Pre school have worked amazingly with S. She is now interacting with the other children and even has friends which was one of the concerns that was mentioned earlier in the school year. Her attention span is still very short but 1:1 or small group work she is doing better. The support they have given is what we have been after and it's working. So raising our concerns has worked to help her succeed already.

The next step from here is an appointment with the child development centre. I'm not to sure what will happen there but I've been told J can not attend with her as she can't have any distractions. This is happening at the end of the month.

Today has been a mixture of a day but also a typical day. Today she was bouncing around the house nothing would keep her attention for longer then a few minutes going from one activity to the next, the house was looking more and more like a bomb had gone off. It was also her first speech therapy lesson so I decided to try and calm her down by doing a walk to get there, walks usually calm her down. 2.5miles later we had a relaxed and co-operative S who then did everything she was asked for at speech therapy. A full 30minutes staying on task. I was amazed. 

However, now we are paying for it. I'm writing this on an app on my phone as I am so angry. She is not listening to me. She is literally running around the house from room to room screeching at the top of her voice. Climbing all over her sister. Irritable. We have got her black out tent out which sometimes calms her down but she is refusing to enter it. She is like a child possessed right now. Has she been too stimulated today and that's why she is acting like this? Argh, I just need to scream.

Since the summer she has needed a lot more stimulation. Almost constantly. If she's not being stimulated she acts like this, almost like she is possessed. It makes it harder for me to slip away for a few moments here and there to edit photos and start drafting a post. By the evening I'm exhausted. I'm sat on the settee with a large vodka and Coke. Needing my down time. That's when she goes to bed well. Most nights she fights it for over an hour or more. So for that reason my blog has taken the blow. I've kept it ticking over with review items but the real stories I love like our days out and holidays have taken a hit. I've since downloaded the blogger app though so I'm hoping to get it ticking over more frequently. 

Even on holiday she refused to go to sleep
So what does this all mean? Nothing really. S is still our wild child happy go lucky caring S. She is also so stubborn and will only do what she wants to do. So if she isn't smiling in a photo that will be her refusing to smile. It does mean I have more sympathy for S as I know she is "unique" it also means Daddy has more patience with her too. She hasn't been given a label and I don't know if she ever will but for  the support to be there and in place ready for when she starts school is all I want. I don't want her to be labelled the naughty kid if she is over stimulated at school, I want her to be understood like all her friends, and for her to actually have friends. Fingers crossed this tough journey with all the appointments will pay off and she will be able to live up to her potential and be a zoo keeper like she wants to be.


  1. Oh bless her heart and well done you for being able to talk about it. I hope she continues to be your little wild child and gets all the help she needs when she needs it. :-)

  2. I know this was hard post for you to write Hun, you know where I am if you ever want to rant or me to have her for a couple of hours or J X

  3. So sorry to hear that you have been going through a tough time but glad that you are starting to get some support in place for S and hopefully finding things that work well for her. Her preschool sounds like it has been amazing. Sending virtual hugs your way and hope you've managed to get a little time for yourself this evening to unwind from the stress xx

  4. It is extremely stressful, and exhausting, when you are constantly on the go. I hope you find that getting it out on your blog is therapeutic, but also a good place to remember key things that have happened. Take it easy on yourself though x


I enjoy reading every single comment, Thank you.