connor at the beach

I don’t usually talk about my role as a caregiver. I talk a lot about my son. I talk a lot about both my kids. Sometimes I talk about myself as a mother, but never as a caregiver. When my son, Connor, now ten, was diagnosed with Autism and Severe Learning Difficulties at the age of four, it was expected, but I was deeply in shock. I left my work experience placement. I neglected my studies. All I could think about was how make my little boy better. Nowadays I know that I don’t need to fix him, he is perfect just the way it is. Even so, I don’t talk about what being his carer means for me. I don’t talk about the isolation, the anxiety, the hopes and fears. Today I am breaking that silence.

Today I took Connor to see the doctor. As we stepped out of the door, me with a tight grip on the reigns of his walking harness, I did not allow myself to think ahead. As we walked past Connor’s motability car and up the street and he started to become agitated, I pushed the feeling of trepidation deep down inside myself. I did not allow myself to anticipate all that could go wrong on a routine trip to the doctor’s surgery. We arrived only a minute or two before Connor’s appointment time; any earlier would lengthen his wait time too much. As I checked him in for his appointment, Connor helped himself to several leaflets which he immediately began to sort through, flapping them between his fingers and brushing them against his face. One by one they would fall to the floor, only to be retrieved moments later for a second, third and fourth inspection.

As we sat down amongst the many waiting patients, carefully choosing an end seat on the front row so that Connor wouldn’t feel enclosed, I avoided making eye contact with anyone else in the room. I could feel a thousand eyes on myself and my son; a thousand eyes whose natural inclination is to be fascinated by the behaviour of this child and the reaction of his mother when things do not go according to plan. I kept one eye on Connor, who had settled down on the floor with his many leaflets, and one on the electronic noticeboard that would ‘ping’ and announce his name at any moment. Five minutes went by, then ten. Leaflets were torn and strewn about, picked up, torn and strewn about again. People came and went. Some offered sympathetic smiles to one or both of us. Names were announced, none of them Connor’s.

After a while, Connor started to become restless. He began the familiar routine of pulling me towards the door, like a dog on a lead anxiously trying to drag his owner towards freedom. I felt momentarily sad. I pushed the feeling down inside myself. As he pulled at his reigns and I resisted, my hand started to become chafed and swollen. I ignored the pain. I stood up, and briefly embraced my son. I told him I was sorry he had to wait. I assured him we would see the doctor very soon and that he would be a nice doctor who wouldn’t want to look up his nose or in his ears. Inwardly, I assured myself he wouldn’t refer to Connor as having “some kind of mental problem,” like the last doctor. Connor then proceeded to try sitting in several different seats and lying on several different areas of the cord carpet, which he rubbed the sides of his hands against vigorously. Names were announced on the electronic noticeboard, none of them Connor’s.

Some time later two boys a little older than Connor appeared next to us. One of them asked me if I knew the time. As I looked down at my phone they said “hello” to Connor. I looked up just in time to see one of the boys waving his hands in front of Connor’s face, which maintained its blank expression. I told him that Connor cannot speak. The boys walked away without another word. I don’t think they really wanted to know the time. Connor returned to the floor, sorting through his leaflets, tearing and discarding them. A little girl nearby repeatedly told her mum that there was “a naughty boy.” Her mum told her not to say that, and then whispered something about it not being his fault. More people came and went. More names were announced on the electronic noticeboard, none of them Connor’s.

A while later, Connor dragged me once again to the entrance of the building. I told him we would not have to wait much longer and that we were not leaving until he had seen the doctor. Dissatisfied with my decision, he instead approached a nearby man, took his hand and tried to lead him to the door. The man smiled and said “hello” but did not move. The man’s own son grinned at me and grinned at Connor, apparently amused. I persuaded Connor to sit down, but he approached the man twice more, who smiled and said “goodbye Connor” before leaving with his family. More names were announced, none of them Connor’s.

A lady arrived and took a seat near us. Connor moved to the seat directly beside her and placed his head on her shoulder. She seemed pleasantly surprised but I thought it best to move him away. He sat down on the floor at my feet and began to gently head-butt me in the knee, getting a little harder with each thud. I stroked his thick curly hair and told him that we would see the doctor very soon and then we would go home. He was not satisfied and grabbed me by the wrist, head-butting me much more firmly in the arm. I cupped his face in my hands, then loosely embraced him and told him that when his name appeared on the electronic noticeboard we would dance all the way to the doctor’s room. I sang “Connor, Connor, Connor!” and started to dance. I was relieved that he didn’t cry. He stood up and rocked from side to side. As if by magic, the electronic screen ‘pinged’ and the name ‘Connor’ appeared! As promised, I led him towards the corridor, dancing and singing his name. I did not look at anyone else in the room.

In the doctor’s room, Connor started to cry. He took me to the door and placed my hand on the handle, prompting me to open the door so we could leave. As his tears fell I felt a heaviness in my heart. I pushed it to the back of my mind. Connor started to explore the room, and found the tap. While I discussed his general wellbeing with the doctor, Connor held his face under the running tap.

“Is there anything you are worried about in particular?” The doctor asked. I turned off the tap. How about everything? I’m worried about everything. Connor turned on the tap. “Is there anything in particular you need help with?” I turned off the tap. I wondered if the doctor could prescribe me an extra set of hands. Connor turned on the tap.

When we finally left the surgery, I expected Connor to be pleased, or at least relieved. But as we neared our house it became apparent that he was not impressed. He hates to be indoors. I imagine him to feel imprisoned like a caged animal, longing for the freedom and open space of the outdoors. I assured him he was only going home for something to eat, and that afterwards I would be driving him to overnight respite care. He started to cry and lay on the floor outside our house.

Later, as he sat in the back of the car while I drove, I sneaked a peak at him. He was now content, able to watch the world go by from the window which was locked but slightly open so he could hold his hand up to feel the breeze. I turned up the car stereo and drowned myself in music. All the emotions I had been holding inside bubbled up toward the surface: the anxiety about taking him to an appointment that for most families would have been routine and nothing to worry about; the physical and emotional pain as he tried to drag himself to freedom, to an open space where he could run free as any child wants to do; the sinking feeling in my heart every time he cries. They rose to the surface of my pool of thought and one by one I set them free. The trip to the doctors was over. It hadn’t been ideal, but nothing terrible had happened. He may have been unhappy but we got through it. He was safe; he was no longer crying. Then, it occurred to me that I could talk about these feelings. I could talk about my experiences with Connor. Maybe that would help not only me but someone else too. A feeling of hope swept over me. So I am breaking my silence. I am more than a mother; I am a caregiver.

Written by Sara-Louise
Hi, I'm Sara (pronounced Sarah). I live in the UK with my partner Steve and my two sons, one-year-old Frankie and ten-year-old Connor, who has autism and severe learning difficulties. I am passionate about vegan food and want to share that enthusiasm with anyone and everyone! My ultimate ambition is to combine my appetite for cooking with a lifelong love of writing and become a professional food writer.

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4 Comments

  1. Mothers often get left out of the caregiving conversation – I think because we lump the roles in together. But, it’s true that many mothers are caregivers too and this adds in a whole new set of challenges.

    Reply
  2. I seriously felt like I was reading about one of our visits to the doctor’s office with our ten year old autistic son. My exact feelings.

    Reply
  3. I have a grown daughter with autism that I still care for. I am so glad you are able to express your feelings without judgement or ridicule. When my daughter was born, no one talked about developmental disabilities. Best of everything to you.

    Reply
  4. Just wanted you to know that someone heard your voice and understands how you feel. ((hugs))

    Reply

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