I have always prided myself on being an at-home Mum. Right from the onset I wanted to be at home for my daughter during her precious early years in particular. I have however had a part-time job since Amy was six months old which has either been at night - or in the weekend - until six weeks ago. My latest job is during the week and is quite the challenge to fit into what was already a busy week.
When Amy was six months old I worked just once a week for three hours a night. Over the next two years this increased to two nights a week. It worked well. My husband would put Amy to bed and as she was an anxious child from the start and very much a Mummy's girl in her first year or so; it gave my husband and Amy a chance to form the beginning of a very strong bond. So although I naturally worried when I first returned to work, and even though the hours were very small; I knew that Amy was fine.
When Amy was three years old, around the time of going through assessments to get a diagnosis, I decided I really needed to work one full day a week. I wanted to let go of the night shifts as I'd started doing one or two other things during the week at nights and I was out a little too much. So working days seemed like the perfect solution. Not only that, Amy was on a waiting list for afternoon Kindy and wasn't going to get in til she was three and a half so I was looking after a child with ASD (even though she was undiagnosed, her ASD was obvious to me) seven days a week without a break - I was exhausted! Although I was leaving the house some nights, I was still her primary care-giver every day of the week and I needed a break. At three Amy wasn't particularly verbal and expressed her social frustrations by physically attacking other children. I spent many a time at Playgroup on tenderhooks as I "shadowed" her play while other Mums got to sit down and drink a cup of coffee and chat! It was not an easy time.
So I ended up getting a job - a Sunday job. I am still working there - it is in a gallery and provides me with the much-needed change-of-scene from the world of autism. The gallery is a creative environment, peaceful and I work sole-charge which suits me just fine! I only work six hours a week but have one full day out from family life and this has been great for me.
At the same time that I got my Sunday job I also joined a gym. I would recommend doing the two - getting a small part-time job and committing to regular exercise to any Mum of a child on the spectrum - in fact, they should be essential requirements for managing an ASD Mum's energy, sanity and well-being! All Mums are challenged of course - but us Mums with kids on the spectrum are often pushed beyond our limits. Living with a child on the autism spectrum requires so much patience, persistence and flexibility in parenting styles. I only have one child but I do know parents of more than one child find they cannot discipline their ASD child in the same way they do their typical children. A psychologist once said to a group of ASD parents that met for an informal evening chat that I went to that discipline does not apply to an ASD child. Obviously they need boundaries and lots of structure - but I find we guide Amy more than discipline her most of the time. She goes to her room for quiet time when she has misbehaved but even this method has backfired in recent weeks as during a meltdown she will physically throw sizeable objects against the door and we have to be warey of property damage, especially since we live in a rental property!
We've had some financial strain in our family this year so about six months ago I started looking for a second job that would fit in with Amy's Kindy hours. I finally got a job six weeks ago at a local college as an ACE (adult and community education) coordinator and have been juggling two jobs and the management of an ASD preschooler ever since. I am stretched.
I have heard several Mums of ASD children claim that they either cannot work at all or not much during the week because of the extra hours and "work" that is required with a child on the autism spectrum. For starters there are the appointments with "the team" of staff allocated to your child. For us Team Amy is made up of child development services, special education, a teacher's aide, a pediatrician, a respite carer, and the head teacher at Kindy. That is six people I have regular contact with and often have to repeat similar information to to keep everyone in the loop with Amy's changing needs. We are on a waiting list to see a psychologist so soon that will be seven people that make up Team Amy.
Since I have taken on a second job, which is by the way just ten hours a week; I have found it quite difficult to squeeze in appointments with those on Team Amy. I used to until six weeks ago be available whenever anyone on The Team wanted to phone, email or talk in person. Now they have to work in with me and it's always not so easy to fit them in as many of these appointments need to take place while Amy is at Kindy so we can have a decent chat. Right now I am working with Team Amy to go through the application for ORRS funding for Amelia's transition to school and it is time-consuming. Not only that, it is also emotionally taxing once again pre-empting the negatives that will no doubt crop up when Amy enters the school system.
Alongside the appointments with members of Team Amy is the time spent coming up with social stories and other resources to aid Amy. With my busy weeks I am finding it a challenge to come up with the extra time and energy required to keep things ticking along for Amy. Another challenge is feeling less tolerant and less patient with some of the aspects of Amy's ASD because I am so tired at the moment.
Amy has had sleep issues since she was a baby - which is not uncommon for a child on the spectrum. This is exaggerated when she goes through periods of feeling anxious. The older she geets, the longer the periods of time of Amy "sleeping-through." When she is unsettled and waking frequently it often coincides with a patch of constipation which is a heads up that Amy is in a highly anxious state. During these periods I often end up spending a bit of my night in bed with her. Disrupted sleep isn't the best for a job in which I am meant to be quite switched-on.
With my change in working hours Amy is at Kindy for longer periods of time and she has of course felt the longer mornings at Kindy. Just this week I picked her up at the gate in tears with her bag waiting for me at 12.30pm on the dot (the last possible time you can pick up your child). The good thing is after purchasing some excellent books on feelings - Trace Moroney's When I'm Feeling series - Amy is able to express what is going on. She has told me she has been missing me and that I am too busy. So we went through her weekly schedule (which is a laminated chart that is on the fridge outlining her weekly activities) and talked about each activity that she does. We ended up taking out one of her weekly playdates that wasn't working out anyway because of a personality clash; and added in Mummy Time.
I have heard some say that parents of ASD children aren't rich folk since so much time and energy goes into them. From early on I knew that daycare would not be the right place for my daughter. Her attachment issues were obvious even as a baby. She really wasn't ready to be at Kindy until the age of three. She will be going to school in the mornings only as she is incredibly exhausted after four hours at morning Kindy each day. Tony Attwood confirmed my feeling that ASD kids need lots of downtime at a recent seminar. On average, he claimed, a child with ASD needs an hour "off" to every hour of socialising. I believe Amy pretty much matches this formula.
All Amy's activities at the moment are immediately after Kindy so we can be home by 2pm every day to allow for a decent afternoon of decompressing. It seems to work really well. So for the first term or more at school Amy will attend just mornings and I will slowly stretch her out during the day so that her after-school activities shift to 2pm. I will probably keep a couple of after-school activities going all year so even when she is doing full days, til 3pm, she still gets to leave earlier a couple of days a week.
Tony Attwood also confirmed another feeling of mine that ASD children need lots of physical exercise to compensate for their overwhelming anxiousness and inability to monitor strong emotions. Not only do Amy's after-school activities help her unleash pent-up emotion; they also provide her with another opportunity to connect socially with others when kindy is challenging.
I guess the biggest thing around me working during the week has been this nagging feeling that I am letting down my little girl somehow. For so long she has been the main focus of my life. She still is - but now I am in a job that requires a lot of my energy and concentration - I have to put Amy aside for the ten hours I work a week. This is probably good for both her and I in the long-term. It is hopefully preparing us both psychologically and emotionally for school. But at the moment we are both adjusting to the change in schedule.
