A Busy Kind of Lonely

Do you feel like your everywhere but no place ?

Are you a Parent of child that has complex needs and requires all of your mental capacity at all times ?

Parents of complex kids can feel so much guilt when they validate the need that they carry, and the truth is we do give ourselves a hard time , its ok to say “this is hard” hard things are hard .

This week i attended a funday with hundreds of other people in a large space, it felt sort of doable with the structure in place , large field, grid style set up lots of space , i had arranged to casually  meet some fellow parents there , i ended up ,at god speed chasing my  child alone, we had an amazing time and unique pace!!!

he wanted to explore at speed i was not even able to reach for my phone to find out where the meeting place was, i was safeguarding in action because i was so worried he would get lost he refuses a strap and had unclipped himself from his wheelchair, of which i then had to almost drag after myself to keep up with him , it wasnt my best decision !!!  But truth be told i do have to wing it sometimes, otherwise my anxiety means we do not go, as i over plan and talk myself out of the hard thing .

 We had blown our budget, been on rides found a Bootfair stall of retro Cebeebies toys and wanted to go home before we had even seen anyone , we passed our friends on the way out and thats how it is , my child needs me to navigate the world meeting him where he is and cut out all the other stuff its cause and effect and thats enough .

And i did think to myself this is hard because it was mentally, physically and just lonely, its me and struggle and a boy allergic to the word no, or wait, who is so transfixed on what he wants to do and where he wants to go he cant hear me .

And that is the only way my child can manage and so therefore i can meet him where he is at, and be realistic about it not being anything else , anything other than the purpose of what we are doing ,for him  anything else is surplus .

This means we spend a lot of time alone , and having very limited forms of communication it means lots of quiet spaces filled with an ipad at max volume of the same sound on repeat.

For myself i fill my own need for interactions with likeminded people via social media and it helps me feel less alone .

But it is a busy kind of lonely and very much a bubble that requires me to conform , meet sensory need so the bubble does not burst .

So we are able to process and emotionally function , PDA traits and learning disability means every no becomes a dance ,that then becomes a sliding in approach to partaking, no direct demands and we somehow navigate, theres lots of impulse and reaction but we just accept thats how it is , its mostly eggshells but keeping calm is key .

So if you are a parent who feels any of the above i can relate ,unique journeys are lonely because they are so unique , please know that makes you very important as you are the only one qualified for the job , be proud of that .

And fails are ok as long as you fail forward and do not allow it to knock your confidence your doing amazing , we are doing amazing x 

Go gently and even when you feel alone , your not , not really x

Reframe the joy it is there always in tiny glimmers that we have to learn to savour  and be confident in the abilities you have .