I share this post with the deepest love for my children, their friends with special needs and the siblings of people with special needs.
It’s not often I write about the challenges that we face as a family with a child with special needs. I prefer not to discuss this so publicly. I know that it is not easy for people living outside of this perspective to fully grasp the love and heartache that co-exists for families like mine.
Yet today I will share this photograph of our fireplace and candles while we waited to usher the New Year in that holds within it more than it shows. It looks warm and cosy. That it was.
Not seen in this photograph was our daughter Savannah who is off camera to the left. She was using her noise cancelling earphones as she tightly crouched on a couch. Curled up in as much as she could make her body curl. Her face was buried in her hands. Her siblings, her dad and I were taking it in turns to hold her. Our neighbourhood erupted in fireworks and boomed their music as the rain poured down until four o’clock in the morning. Even with the noise cancelling earphones everything became too much for Savannah. She was in a panic attack and there was no way for us to stop any of the triggers.
As an autistic person, for Savannah (not all autistic people have the same reactions to the same issues) loud unexpected noises set her heart racing and she falls into a state of panic. She goes into full shutdown and struggles to focus. She needs calm and comfort which after twenty-two years of raising Savannah, we know how to be still and not allow our frustrations to take over. If at all that we even feel that anymore.
It would be easy to say that there are laws in place prohibiting the use of fireworks and that loud music is not allowed after a certain time. However if anything we have learned as a family of a child with special needs is how aggressively most of society feel entitled. It’s such an interesting perspective to parent Savannah. She is actually entitled to so much because of her disability such as a simple matter of being in front when watching a show as she is unable to look over someone’s shoulder. Yet, I still find myself asking people not to stand in front of her wheelchair at events like these.
Or for family and friends who become upset when we don’t visit them or don’t invite them over or can’t attend their event. It is baffling how we are easily cast aside for these reasons because people assume that my life is about them. Travelling with a person in a wheelchair means having enough space for three children in the back seat plus a wheelchair in the boot. We drive a sedan. We can likely carry one small bag which is usually Savannah’s bag of extras. Once that is loaded into the boot, there is nothing else we can pack in. So travelling too far is not an option and Savannah cannot sit upright in a car for too long. Hence we limit our travels to what is comfortable for the whole family. I will not even mention the costs of being a family with someone with special needs.
We invite people over who will not mind getting their own coffee or taking a turn to sit with Savannah if she needs company. I can’t have people over who require formal entertaining and also don’t know when to leave. I am sorry about that. It does not mean that I do not like them as people. In most cases I really do enjoy their company, but the manner in which they define entertaining is not one that will work for me. So in that case, we will likely meet somewhere for coffee for an hour or two.
I am trying to make a living. Now I do that by writing and it is not easy. In addition I work from home which has been my daughter Savannah’s domain as she spends the most time in the house than the rest of the family. It is not easy negotiating emotional and mental space with an adult autistic person who also has a physical disability. I spend much of my daily energy helping Savannah to navigate the world from her unique perspective which often I fall short to understand because I just do not experience life the same way that she does. I also take care of her physical needs like bathing and serving her meals to her. When she is in a meltdown state, she will not eat and then I will feed her.
The world is full of people who have a right to enjoy life because they worked for this right. I do not take anything away from that. Yet true living isn’t made up off what rights we exercise. It is made up of what rights we gave up so that someone who cannot survive in this world alone, may at the very least live a life without further challenges caused by those who have the understanding to know better. For this reason our December was epic. We celebrated the season with amazing people who know that being our friend will be different. Very different but still full of merriment. Ours is the home where there is always a party happening and people connecting while Savannah’s needs are respected. For my friends and family who make that happen, we love you.
So what happened to Savannah as New Year’s erupted around us? Well, the most painful truths are not lost on my other children. As we attempted to usher in the New Year in prayer, Talisa held her sister. When we were finished she played Savannah’s favourite Bollywood songs as loud as possible. Both her and Eli tried their best to distract Savannah with amusing antics. Talisa offered to stay up with Savannah so that Michael and I could go to bed. I thought I did not ask for this nor did Michael, nor did Talisa or Eli; yet here we are. A family who understand what is really important in life. Sitting in front of a fireplace with warmth that no fire could have provided. That was nothing to be sad about. It was something to be grateful for.
I thought about the hundreds of families I know, who at that same time were either holding down their loved ones as they agonised against the loud sounds or fought to break through doors in an attempt to find a safe space or created their own louder sounds to drown out the external noise or lay still after seizures racked their minds and bodies. I thought about the depths of love and heartache we live with and yet the next day our social media posts will only reflect one part of this story.
My posts will never show what challenges we face as Savannah’s family. She does not have seizures or big outbursts that may cause harm to other people. No, our daughter harms herself. In addition due to her physical disability, tension causes her muscles to go into spasm which means that for a day or two, she may not be able to leave her bed without significant help from us. We will never disclose anything that leaves our daughter exposed to a society that seem to know much about life, but so little about living it; so that is the most you will get from me.
I will not share the tough stuff in videos or photographs about our behind the scenes because Savannah cannot exercise her right to privacy and I am the custodian of that. Sharing emotive images will certainly launch my social media profile into a whole new level by telling the story of how disability breaks me wide open and leaves me reeling. That may very well be my right to speak my truth and share my pain. Yet, as I write this and watch my daughter sleep, I know that my rights are forfeit if it causes her harm. Even if she doesn’t know that harm is being done to her. She is unable to protect herself on the internet or tell her side of the story. While she may never know; as human beings our family will enforce every right and carry through every responsibility to protect her rights.
I know this is hard to read, but this is for all those families who are recovering from the New Year celebrations that they were not a part off in the traditional sense. For them and myself I ask this:
- Do not speak to us about rights and what people are entitled too.
- Do not boast about the one or two times a sacrifice was made to give someone who is vulnerable a better experience.
Simply do this instead:
- Live with a consciousness of journeying through this world together. Even if you have to slow your pace to accommodate someone else.
- Just as all parents do not want their children to be harmed; please remember that for some of us, our children are children forever. Parents of typically developing children are unlikely to be holding an adult while they are in a full-blown panic attack. So be kind when we leave an event or ask for the noise to be lowered.
- Give someone the benefit of the doubt.
- Travel light without all the hangups of who did not show up for you.
- People need people. Not things.
- Forgive and then forgive again. I get to practice this one often.
To all our co-families of children with special needs:
Here is my disclaimer: I asked Talisa to read this post before I published it and I asked her if it was too jarring. She said “Mum, anything we write or say about this will be jarring and people may find it harsh because they just do not get it. But it needs to be out there. In our family we have the space to talk about this but there are so many families who can’t. Publish it.”.
There are many support organisations for people with special needs. I have listed three here. You are welcome to add the links to more organisations in the comments below.