An introduction to life on the spectrum
My second child, a daughter, entered this world on New Year’s Eve 2007 and is now eight years old. In March this year, she was diagnosed with Autism Spectrum Disorder. It’s been a long hard road to get to where we are today.
The early years.
As a baby, my daughter would scream constantly and would only settle once she was held. Ultimately, in desperation, I gave in and carried her around strapped to my front in a sling.
She suffered from sleep apnoea and was prone to being excessively sick after each meal. As she grew older, I became worried as she didn’t walk until she was almost two years old.
Although once she did, this brought with it a whole new set of challenges. She only required little booster sleeps and would climb out of bed in the middle of the night, scale the baby gates make her way downstairs, thus having access to anything and everything.
For safety reasons, I was forced to remove all the baby gates and put locks on all the downstairs doors!
Whenever I turned my attention away from her, even for a second, she would attack me by pinching my skin or pulling my hair. I was run ragged just keeping up with her demands and challenging behaviour.
As she grew so did her strength.
By 2010 I was pregnant with my third child. I decided nursery might be a good option and may teach her the social skills she seemed to lack. This time to myself would also provide me with the respite I so desperately needed from the tantrums and constant attention she was seeking.
After nursery came the school years!
We would be late almost every day due the sheer time it took me to get her up, dressed and ready for school. She would have tantrums over the way socks and clothes felt touching her skin, and she detested hair brushing. I was exhausted before we even got out of the door in the mornings
She didn’t sleep; I got no rest, she would still be awake at midnight and beyond. She would physically vomit if she encountered any bad smell. Loud noises would send her off the rails into what can only be described as psychotic hyperactivity. God forbid if anybody moved a pencil or a book which were strategically placed in a specific order!
As she got older, there was an unfavourable downhill progression in her behaviour. She became excessively controlling and always wanted her own way, and she became more violent, mean and aggressive and started being physically abusive towards myself and her siblings.
It felt as though I was failing her and failing as a mother. I could not comprehend what was going on with my child. I couldn’t understand her violence, nor could I tame her! It was quite literally 24/7 chaos, and I didn’t have a clue how to subdue any of it. What could I have possibly done so horrendously wrong?
Having had my eldest child under CHAMS for several years, It was time to seek a referral, just to see!
The long way round
Having had years of family support, every early intervention strategy, every programme, parenting class, filial therapy, play therapy and seeing a child psychologist. You name it we did it all, yet she still had everybody scratching their heads. Professionals would say, “she is a very complex little girl”! In my heart, I knew there was too much of something for it to be nothing.
Finally, we had a diagnosis of Autism which didn’t come as a surprise, more relief, like a weight lifted.
I watched her struggles, saw her hold her hands over her ears when it all got too much. It hurt to see her pale, sickly and anxious before school each day. I’d hold her tightly through her panic attacks and talk her through each gasp for breath. I heard the questions when she didn’t understand why what somebody said wasn’t always what they meant.
Once we had a diagnosis, a name for it, it appears Autism divided my world completely. Between family and friends, the people I thought wouldn’t understand did and others whom I thought would, did not.
Autism brings days that drain me, physically and mentally and some days I just want to lock myself away and pretend it’s not happening, it’s just too hard! Other days I will see it clearly and am overwhelmed with compassion.
My mental health suffered.
Soon after her diagnosis, I went on a complete guilt trip, became over the top mama bear. She was mollycoddled and her behaviour excused. I allowed it to happen and how dare anybody else to hold an opinion, she’s my baby I was going to protect her from the world. I let her get on with her meltdown’s I didn’t think I was strong enough to do it. She was given things to make her happy because a smile was a very rare treasure. I treated her like she was sick.
I became very withdrawn; We had a name but no cure. There is no cure. It felt as though I was delivered the old “ok we’ll be in touch’ speech and then nothing! I was left stranded, hanging, thinking what happens now?
Where we are now.
I feel that recently I have reached a plateau.
Re-structuring my thinking I have grown stronger. I tell myself I can do it; life will just be a little harder. I have stopped feeling hard done by and sorry for myself.
There will be days when I am so distraught with feelings of guilt and insecurities about my ability to cope and support her. Other days I will make charts, repair damaged doors, clean up after an episode and feel motivated. Life is constant tidal waves of emotions.
I now want to challenge her and push her, gently of course, but in my heart, I know she needs it. It will be good for her. I realise I have been enabling her to continue her downward spiral. How will she ever be able to function as an adult, how will she ever know what she can achieve? How will she ever reach her full potential?
Every day is different and unique for us both.
It’s not all negative. On a good day, she can be very loving, caring and compassionate, she likes to sing in the shower and draw me pictures, and she gives the tightest hugs possible. We have days when we are a “normal” family and days where we sit on the floor quite a lot and clean up broken glass.
This is it, my life it comes in waves. The ever-changing tides of living with autism, you just need to stay afloat because the human being that you love so much is counting on you to!