Yellow Azalea

As we have rolled through the first few weeks of 2021 I have been pondering what I want this year to look like. This year should be poised to be a transitional life stage year for me, the twins are now 17 years old and they should be looking to venture out into the world independently soon. At this age, if it has not already happened, there is a natural shift in the dynamics of self-responsibility as they officially become 18 year old adults. Driving themselves around, going out with friends, maybe working, making their own decisions about what they wear, what they buy, whether they drink, who they hang out with, and of course, being able to vote.

This, is how it will be for Holly, who has just started her last year of school. She is planning her next life stage of where to go to university, what to study, where she might live – it’s an exciting time and she currently she is keen to go to Auckland University and to try to get a place in the halls of residence. I am all for that – having not gone to university straight out of school, I sometimes wish I took that opportunity, as much for forming bonds with like-minded souls as the learning. I hope that she has a great last year of school without pandemic drama, and that she continues to develop into the exceptional young lady I can already see.

Once you are a mother, you will always be a mother and just because your children grow up, the love and connection doesn’t go away just because they reach a certain birthday. But as parents, as your children, go from babies, to infants, to school, to high school, each of those transitions are usually a part of life – it’s what is meant to happen.

Except when you have a high needs child, the milestones are different, and those transitions are not there.

There are transitions in care, you change doctors, hospitals, support workers, therapists, funding streams and classrooms. But chances are there is one school for life (and no choice) and after that, well, as a family, you have so few options, that you really feel like you are on your own with an adult child who still needs 24 hour supervision. The best way I can explain this to someone who has not been through this is to remember when you had a baby, and you couldn’t go where you wanted, when you wanted, or you had to trust someone with your baby, your baby who can’t tell you if something is wrong, or if that person is not kind to them. You have to trust that the world is good and that is why you leave your baby with their grandmother or trusted friend when you can, if you must. And if you sent your baby to daycare, that too required trust, but if your baby was sick then you had to take a day off work and stay home with the baby who cried all day, because day care doesn’t take a sick baby and it’s too hard for Grandma, and your friend also has a job, so it falls on Mum (or Dad).

When you have a high needs child, that’s your whole life, on repeat, but amped up with visits to therapists, people coming into your home, hardly any sleep, reduced to one income (or one parent) and money’s tight and a lack of sleep and a hypervigilance so extreme that you never relax. Except the government helps a bit – they give you money to get support workers (if you know how to ask for it and you can tell everyone how hard it is). You find support workers and become an employer – and they don’t do things the way you want, or they find the job too hard, and they leave and you train another carer, again, again and again. And your child does not like change, so every time someone leaves that mucks up the routine, and every time someone calls in sick and you can’t get a carer, you do it and there is a consequence to that.

And as parents, this has long reaching effects. I am lucky that Phil has travelled this journey with me. But at what cost to both of us? I can’t talk for Phil, except that I know the pressure of being the main (and sometimes only) breadwinner in the family is a stress in itself. Responsibility to have to keep a job that pays enough (= stressful job) while keeping up with what we have going on at home is not easy. For me, I have not had the choice of whether to work full time or stay home. It was and still is, totally unrealistic to try to hold down a full time well paid job Monday to Friday, because there are too many days off, too many phone calls to make, too many support workers who get sick and there is just not the support workers out there to make this possible. So, I have worked part time throughout the last 15 years (not the first two years while Mitchell in hospital full-time) and I have worked hours to accommodate appointments – this means school hours, nights or weekend days.

If both our children were born healthy, it’s true, I might have chosen to be a stay at home Mum for 17 years, but I’m not sure, and we will never know the answer to that. But I am life stage ready to take on a job or create a business, that has meaning, reflects my abilities, that uses my degree in business psychology, and that pays me well enough that I feel valued. I am ready to move on from the role of carer, administrator, employer, driver, cleaner and co-ordinator of Mitchell’s care. But are my family ready and can community rise to the challenge?

Don’t get me wrong, I still want to be there as one of the most important people in both my children’s lives -, that does not ever go away.

Let’s see how the year goes? Already one month in and Mitchell went back to school today. A new class, a new teacher, a new Teacher Aide, new therapists. Too much change all at once in my opinion, but I have to learn to let go (a little) if I want a transition to happen. After letting my feelings be known at school, they have conceded to place a TA from last year in his class during feeding times this week. Big breaths and roll on 2.30 pm for pick up to see how it went.