Good days and bad.

It was December and our first parent teacher meeting at school for Pixie-Faith. She had just completed her first term in “big girl school” reception class. Some people hadn’t agreed with the decision not to tell the school that pixie had previously been observed at her nursery setting, This wasn’t done to delay things simply that we had changed local authorities during the process of going from nursery school to big school and 1: we would still have to have it all done again as the key stages are different from place to place so any observations that hadn’t been given a formal diagnoses were irrelevant, 2: I felt it was important that Pixie was evaluated on her own merit not just because the school knew that her brother had a diagnoses, and 3: because I trusted the school and reception staff  1000%and if there was something to observe they would see it almost immediately and address the right course of action with us.

And address it they did , as we sat down at the tiny tables we expected maybe to hear how pixie was a shy child that preferred to play alone and that she was still a little behind with her speech however doing well. What we actually got told hit home hard and had both myself and her teacher in tears as she knew the struggles to well that I had already faced with Alfie. She explained how although Pixie-faith was adorable, but developmentally she was still only meeting the mile stones of a 2 year old, and obviously she was now 4.5 years old . It was time to face the stark reality that Pixie-Faith was highly likely to be just like her brother Alfie and indeed autistic too.

Alfie , at this point was just finishing his first term in year 2 and had made a handful of friends and was extremely willing to try and learn and please his teachers. all providing the days plans hadn’t had to change unexpectedly and the lesson plan was “as it should be “. Alfie hearing had made small improvements in the past two years and this was made even better but yet again the constant support from his teachers. Alfie was at the front of the class and given very clear directions as to what was expected from him every day and how. This in turn gave him growing confidence to say when he hadn’t heard the teacher or his peers and the tools to use to grow academically.

We had decided to try Alfie with school dinners for the last week of term too, with the thoughts that if he saw his friends eating them maybe he would like to try the new foods too. Epic fail !! he absolutely refused to try any thing but the fresh bread that was there to add to each meal and would then become unsettled in class and hungry later in the day. So back to packed lunch we went. Did Alfie have an exciting lunch box full of colourful fruit and veg snacks with different fillings in his sandwiches every day ? absolutely not , He would have a bread and butter sandwiched, a few mini cocktail sausages, a bag of crisp and a drink and if I was really lucky he would ask for some dippers, but then leave the cheese and just eat the bread sticks !!. That said every day his lunch box would come home empty and his little tummy was well fed.

A few months down the line and countless appointments later Pixie was well on her way to having the perfect education worked out for her, An education that meet her needs with teachers that not only really understood how to work with her on a professional level but teachers that really did care about her emotionally. Pixie had her own butterfly spot on the carpet to begin with, for small group time and while this helped Pixie understand where she needed to be she couldn’t cope with the fact other children would want to sit in different places each day and therefore she would become anxious and distressed, she then progressed to having a special chair just for her to sit on. Cue “princess Pixie” Pixie had told the teacher that she was a princess as only princesses had special chairs nobody else can sit on.

By the end of Pixie-Faiths reception year she was really enjoying going to school, she had one friend and her speech was progressing in the right direction however still very delayed. Additionally she had taken on a coping strategy to help control her anxiety. she had began to become mute.

Just to explain: being selective mute is not as simple as deciding not to talk, the brain is an amazingly clever thing and to protect it becoming more damaged it shuts down, In pixie’s case it is her ability to speak or communicate effectively. The only way I can explain it is by giving the example of playing hide and seek with a toddle, when they put the hands over their eyes and because they cant see you, they believe you cant see them therefore they are invisible, you cant see them so they think you don’t know where they are hiding.

So in Pixies mind if she doesn’t speak to you, you wont talk to her and she become invisible,her anxiety levels drop and her ability to interact increases, this however can take a matter of minutes or sometimes she may go a few days with very limited words.

At home the bond between Alfie and Pixie is unbreakable and they may as well be twins. They bounce off each other constantly and although they don’t play together they play along side each other with a mutual respect for each others space and an unspoken understanding that they need their own space.

However, Frustration levels are a huge challenge at home though as explained in an earlier blog Alfie’s hearing is very intermitted and sometimes he just can not hear at all and literally moments later the house is alive with noise and volume is a max.With this brings sensory overloud and the “classic” word meltdown is an understatement. With Alfie’s meltdown in full throw and lasting anywhere between 5 and 55 minutes this will trigger a sensory over load for Pixie too ! just to clarify I now have two very distressed autistic children in full blown sensory overload, a pre teen having a strop because he doesn’t want to do his homework an I’ve refused to allow him his x box until its done, so of course he feels like it would be fun to throw a tantrum at me to, oh and not forgetting this is after school most days and the dinner doesn’t cook itself !!

Do not get me wrong the house work would have been taken care of as if you remember from previous blog Steve and I reversed rolls in a bid for me to go back to college (almost finished that year whoop ) but he can not cook for love nor money and If I don’t get something on plates in front of these little ones soon I’m at risk of their sugar levels dropping through the floor, and bring a whole new meaning to the world “hangry”

Do I love my life of course I do but my god its stressful xxxx

(Alfie 6.5 Pixie 4.5, Tyler 11)

 

 

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