A special guest post:
I wrote this earlier this year as part of our parental views for the EHCP applications and wanted to share it with you in the hope it helps you feel understood...none of us are alone in this even though it can sometimes feel that way ❤️
Parenting children who have special needs requires an almost super human love, where our expectations as parents are set aside and the needs of our children met first. Unless you have the privilege of raising a child with special needs, you simply can’t understand. Their daily struggle and yours is brutal. It is impossible to imagine the work and exhaustion of exhibiting patience, discipline and love while your child shows you extremely challenging behaviour day after day without any hope of them ‘growing out of it’ or it being ‘a phase’.
Our wonderful children are not average children with standard needs. They are special children with special and specific needs.
Our children have become tools of refinement in our lives. They struggle. This means our family struggles. There are marital arguments surrounding their little lives. Worry, anxiety and anger stem from their existence and secondary trauma is present in our home.
Love also comes in Tsunamis! Through the challenges it persists because love is a choice. We choose to love our children and raise them the best that we know how, but it doesn’t negate the pain that also marinates within.
It is hard to understand what it is like to ache for your child to be ‘normal’ to want them to have real friendships. We always anticipated our home would be filled with lots of friends and lots of happy family gatherings, meals around the table filled with laughter. It’s so hard when you don’t see your child connecting with others and are forced to live in isolation and segregation.
Unless you are raising a child with special needs, you don’t know what it is like to take everything you thought you knew about parenting and throw it out the window. Wondering what you are doing wrong and why nothing is working.
Standard parenting strategies do not work with our children. Our children don’t respond to time out or to typical consequences and rewards do little to help improvement. New strategies are needed, and they are hard to discover and even harder to implement as a united front day after day. There is a lot of trial and error. Failed attempts; defeat is a reality. Yet determination and love persist.
Unless you are raising a child with special needs, you don’t know what it is like to yearn for ‘normal’.
You don’t know what it like to wish your child could cope with being at a birthday party or play date, brownies, football, ballet or a playgroup without causing destruction in their wake.
There is a longing to be able to go for the day out or for a meal without anticipating a meltdown. The crowds will be too much? They will get overwhelmed or over stimulated? They are going to lose it? We must try to remind each other that restraint trumps exasperation and their brains don’t process the like other children’s brains. Their behaviors are messages from their brains, which are totally beyond their control.
Unless you are raising a child with special needs, you don’t know what it’s like to try everything - huge efforts and sacrifices, constantly wondering will anything make a difference?
The endless appointments with Doctors, Therapists, Social Workers, and Specialists are daunting. Will anyone give us tools to help our children? Is the therapy making an impact? Do we have to medicate our child? The constant questions, which bombard us daily and remain unanswered, are a constant worry.
Whether your child has Attachment Disorder, ADHD, PDA, FASD, SPD, ASD or any other diagnosis, as a parent of a child with special needs you live in a constant state of hyper vigilance and anxiety, risk assessing every waking moment of every singe day in an attempt to keep everyone safe.
We constantly question whether we are too strict or not strict enough. Are we being as therapeutic as we can be, are we good enough for them?
We love them so much so we just keep going.
We love them so much so we just keep going.
The public meltdowns are horrific and the looks of disapproval are heart breaking but we have got to the point that we don’t care what others think now (well most of the time!). They don’t understand the pressure you are under every single day raising a child with special needs.
It has changed us. It has changed our family. Honestly there are momentary desires to escape - of course we never would, but the day in and day out is overwhelming an often we wonder how we will we physically and mentally carry on doing this for the rest of our lives? Will we survive this as a family of four? The guilt these feelings bring is haunting and unless you are raising a child with special needs, you could not imagine the determination it takes to start all over again every day but amazingly each day it comes. We to choose kindness when we are filled with anger, joy when we are feeling defeated, and hope when we can’t see the light at the end of the tunnel.
It is our privilege to be raising two amazing humans. We will persist. Defeat isn’t an option. Hope abounds. Love will triumph.
We fully accept we cannot reverse the organic brain damage and the early life trauma our beautiful little girl, suffers due to maternal alcohol and drug use. We cannot change her genetic make up and the conditions which may have passed to her from the people who created her.
We also accept we cannot chance the huge Attachment trauma our amazing little boy endures and that makes the world such a difficult place for him. He is constantly in flight, flight and freeze modes. To watch our little boy overwhelmed by a need to be in control of everything and everyone at all times is devastating. At three years old when most children are really only thinking about themselves and their needs his little body is flooded with cortisol making him hyper vigilant and full of anxiety.
We can do all that is humanly possible to give them an environment in which they can grow and learn. An environment where they feel safe, valued and accepted. We cherish them and celebrate them - our very special children deserve nothing less.
Your kindness and acceptance goes an awfully long way so we want to say a huge thanks to our dearest friends and family the people who support us, accept us and love us just the way we are!