Dear (Additional Needs) Parent

I know as a parent we all cry at one time or another over our child, each of us for very different reasons, but all of us because we love them so very much. Sometimes we cry happy tears, then sometimes tears of frustration stain our faces, and other times it’s because our heart breaks for them.

Every family suffers it’s own hardships and circumstances, some are temporary, some are long lasting, some of them are the cards life dealt you, and others are devastatingly permanent, but one thing remains to get us all through these hard times; love. Above anything else, just love.

Love can change your perspective on almost anything, and does the world of good for your soul, and sometimes it’s the only thing you have to offer.

One of my boys suffers with severe anxiety as well as Sensory Processing Disorder and he has recently been diagnosed as being on the autistic spectrum, and it often breaks my heart watching him struggle knowing that I cannot change things for him. All I can do is support him, guide him, and show him unconditional love. I cannot change the way his brain functions, but I’ve had a huge role to play in the way his heart functions. I fill it with love, encouragement, praise, solutions, confidence, and I try my hardest to ensure he has a healthy self-esteem.

Some days I can conquer the world with him, and we navigate our way through the problems, and the thoughts, and the behaviours, but other days I cry for him after hours of meltdowns and aggression. I peek at him whilst he is drifting off to sleep and I hear him sob. I ask him what’s wrong. Sometimes he doesn’t even know. Other times he has dreams that were so nice he didn’t want to wake from them, or dreams that were so scary he thinks they are real. Sometimes he dreams of another boy just like him who understands him and hugs him tight. This is the one that gets me in the gut and upsets me to the core, he must feel lonely, in his own world, and like he isn’t understood. I hate this feeling he has so much but all I can do is reassure him, validate his feelings and reaffirm his worth.

Some days I watch him play Lego, his familiar territory. He sets up scenes and recreates movie scenes. His eye for detail and accuracy astounds me, but sometimes it scares me. His little brain is so full and he is so hard on himself if any detail is wrong. I wish he would be easier on himself, but all I can do is love him, reassure him that it’s ok to think how he does, and try and extend his play to help him be more spontaneous. It’s hard teaching him that perfection is not always possible, his brain craves perfection at all costs.

School holidays are another time that often renders my heart broken, the dreaded night before the new term begins especially. The anxiety grips his tummy and he lashes out at everything and everyone. He goes into full flight or fight mode and nothing can soothe him, we have to ride the wave and hope it ends sooner rather than later. All we can do is reassure him, cuddle him, talk things through. It hurts my heart that I cannot help further.

There are so any routines and habits that have to happen in order for his world to feel at peace, some of them are cute little quirks that we all have, but some are a matter of urgency and must be done, and done correctly. I wish I could switch his little mind off and give him a rest. He must be so tired sometimes of the constant battles and urges.

As a parent it is heartbreaking not being able to help your child, and sometimes it gets too much. But that’s ok, we are not robots and we have feelings, strong feelings.

But, we have to be warriors for our children, and not worriers! Worrying drains the life from you, and your child needs that life, they need your hope and your reassurance. They need to share your courage when they cannot understand their own world.

I worry so often that I’m failing my boys, but when push comes to shove I’d give my last breath if it meant they’d get one more. I’d fight to my death for them. And that is what counts.

Sometimes I don’t have a solution or an answer, but I always have a cuddle, I always have a kind word, and I always have love. Love has seen us through many tough times, and I know it will continue to because it’s the only thing that never grows tired. My hope dwindles, my soul gets weary, my heart gets broken, but my love remains strong, and always will.

Additional needs parents you do an amazing job, and it’s a big learning curve too, keep going, keep loving, keep being their warrior! Never worry about being ‘normal’. Normal doesn’t exist! What’s normal for the spider is chaos for the fly!