Of late, I have been feeling very discontent..
In February, I shared how this would be a ‘transition’ year for our family, as the twins turn 18 in December. Adjusting to the thinking that Holly will be leaving home and going to University is an expected transition, and while I am nervous for her to step out into the big wide world, I am also excited and proud that she is able to take this step towards securing a future. It’s a stage of life transition, and I am confident we will still be seeing her often as she adjusts into the start of life as an adult student. I will be worrying about her for sure. I will miss her – you bet, but it’s what you hope for. You hope that your children are prepared and ready to go out and live their best life.
What I am struggling with though, is how we can help Mitchell achieve his own good life. How can we set him up for a more independence. How can we make sure he will be okay when we are gone? Over the last 2 years we had extra assistance via the high and complex needs programme to ready him as much as we can for adulthood. We have seen some changes, some improvements in participation and helping with his self cares. But the gap between this and being independent and verbal is gigantic. It’s like someone trying to jump from one side of the Grand Canyon to the other – it ain’t gonna happen in our lifetime. While I want to see Mitchell achieve his full potential I can’t see him being able to live, drive or work independently. Ever. I worry that my own belief in this matter sounds like I am holding him back – but I am naturally a pragmatist and while I want to be optimistic, as his Mum, I also have to be realistic. He is amazing with what he has achieved around both his physical challenges and his intellectual disabilities. I am beyond proud and amazed at how he adapts to go about life with us, at home, at his school and in the community. But what is next for him after school?
Society wants and expects us as parents to create an independent and inclusive life for Mitchell in the community.
The disabled organisations advocate for inclusive communities and what parent wouldn’t want this for their children. There are initiatives to get disabled members of our society into the mainstream workforce, to push for the eradication of ‘special schools’, and most of all that disabled people have their own voice in how they live their life. I am an able bodied member of society, so I can’t know what being part of this community feels like but I applaud all of these aims and more . Yes, we need change, yes, community needs to be more welcoming, inclusive and open to people that are different to themselves. Yes, disabled people have every right to an equal say if how they live their life.
BUT, what happens to the disabled adult who can not speak for themselves? Or sign for themselves? Or use an AAC device to communicate? Or write? What happens when a persons intellectual ability hinders their ability to make their own and independent decisions? Is their voice any less important than other able or disabled? How does our son vote? How does he choose what a good life is for him? How can he fill out the 1001 forms I have filled out on his behalf every time something changes or the system requires an update, a needs assessment? How does he go and pick up that prescription? How does he take his medicine? How does he get to his appointments? Even with a sign interpreter, or an easy read option, how can he get information, if he can’t communicate?
Law would have it, that at 18 I will have to seek out and put in place legal documentation to allow us (his Mum and Dad) to speak and represent his best wishes. I believe he will be okay with that, because up until now we have acted to the best of our ability to give him the best opportunities we can. As his agent, I have (with my husband’s support) advocated to try and open up life as wide as possible for him. There has been a lot of effort involved in this and I can’t even begin to think how I now have to fight to continue to be his voice. I understand that not everyone’s situation is the same – but I’m feeling that there would not be anyone standing up to challenge that we haven’t given MItchell every chance within our reach.
Part of my problem, and the reason for my inner discontent is that I want that transition to my next stage. I’ve reached my midlife, and given as much of me to our family that I can and I would like to once again be an individual, with a job of choice, a freedom to control what I do next, where we next live. I would like to hand over some of that responsibility that comes with living and caring for your child that relies on you for everything. I would like the chance to live in a home where we can use the treasures, have space that is our own and not shared with carers, be able to leave things on display without fear of them being broken, dress without taking an extra option (just in case I get covered in saliva enroute), I would like to eat dinner without multiple interruptions. I would like to stop doing the school pick up and drop offs. I would like to not be the ‘substitute’ carer whenever we have no-one available to work, or someone quits because it is too hard. And, now after almost 18 years I have developed a smouldering resentment that this is how it is and how it will be. THIS MAKES ME SOUND UNSYMPATHETIC AND HORRID. But truth is that if I was truly horrid we would not have got this far and I am just speaking my truth. I am discontent. I continue to suffer from depression that just doesn’t lift and that light at the end of the tunnel is less than a pinprick.
I can say all this, and I can share how I feel to a bunch of professionals involved in Mitchell’s care and they have no solutions. Over the past year we have tried to find appropriate help for at home, including sharing our ads with Mitchell’s psychologist, School team and his Pediatrician – as they offered that there might be someone in their circles wanting work. Nothing, nada, zip. Ads on SJS, Seek and we get a couple of responses if we are lucky – and yet our unemployment is high.
At the end of all the round and round discussion that goes on to plan for Mitchell’s future, it comes back to us the parents – because there are no suitable options. I am not advocating for the reintroduction of institutionalisation, but New Zealand needs to take a hard look at how it’s welfare system supports the adults with the most severe and complex needs. It is not fair and realistic that the family carries the caregiving burden for a lifetime. I know of families where solo Mums (by and large the female is left alone) have been supporting their intellectually and physically disabled dependents for more than 50 years. In many of these situations the mental and physical health of the primary caregiving parent suffers. It’s easy to understand why, the lack of sleep, hypervigilance, isolation, physical wear and tear from lifting, and chronic stress all contribute to bad health outcomes. Even though maternal wellbeing is positively co-related with good outcomes for the high and complex needs kids, there is still no free counselling, support or assistance for the mother until you are near a breakdown. On top of this, Mothers, are most judged by how their offspring turn out. Whether this is a fair assessment or not doesn’t matter, mothers have been glorified, blamed and held responsible for their children since the beginning of time. This makes it difficult to stand back and say that you would like to let go and share some of this responsibility. How can a ‘good mother’ say this without being the victim of judgement.
New Zealand’s paid family care alleviated some of the problems associated with adult dependents still living at home, by giving up to 40 hours per week to a resident parent or sibling. Over the past 12 months, we have made partial use of this system due to lack of caregivers. But it’s not my preference. As a mother I fully appreciate a child is and always will be my responsibility, the world, our country, our government doesn’t owe me. Having children is a choice and while life would have been easier with two healthy kids, I do accept and take pleasure in many aspects of how our life, and my own experience has been richer with our children in it. On the whole, it has changed me to be more empathetic to others and opened my eyes to possibilities. If I am caring for Mitchell and getting paid for that I am not ‘mothering’. I am giving medications, doing physio, changing multiple linen, assisting with feeding, changing ng tubes. I am caregiving. It is a relentless job, and even when a caregiver is present it is not full downtime as you are still supervising that person and taking the responsibility.
This leads me to what is next?
Ideally, the next stage would look like us moving into a home that has a semi separate area, a rumpus room or granny flat, where Mitchell could be based, to live alongside us. We could employ a team of people to provide his care, including a Manager/Agent who took the administration work away from me and recruited and trained the team, and advocated for his best interests. Mitchell can stay at school until 21, and then attend some day programmes. And if Wilson Home will permit it, he can have respite there until he leaves school. It sounds simple – but how do we afford that as an option. At the end of the year, we can look at our options about where to live. With the break from going to adult services, it’s a good time to do it. I could potentially work a more challenging job, if I was not always the back back up. What makes this plan even harder is that while I may have returned to a full time professional job when the kids went to school or high school, this simply wasn’t an option. The impact of that is living largely on one income with a second minor source.
After 21 there are currently no respite options for Mitchell as his night time dependency on oxygen and ng tube feeding requires that he has nursing level care, when the parent is not taking on this responsibility themselves. On top of this is a need for 24 hour one on one supervision, even at night time. Caregivers at Wilson Home are not permitted to give medications or to do tube feeding, but this is ironically not the case in the home when we employ directly. In an ideal world, we would not need respite, but in the real world we do. At the moment the options for respite would be to use a rest home and who wants to place a 21 year old young man in a rest home for respite. This is why when I look into the future I can’t see solutions, unless we can be strong enough to make something happen on our own.
That’s the next stage. Now, we just need to find the money and the people. I need to rise from this discontent and make room for myself to regain my power as a women in her menopausal midlife. If I can capture my energy back then we will make this happen. As part of this journey I have gathered a collection of books to read and have four on the go at the moment:
- The Heroine’s Journey – Woman’s Quest for Wholeness by Maureen Murdock
- Good Mother, Bad Mother by Gina Ford
- Creating the Work You Love by Rick Jarrow
- The Invisible Load – Dr Libby Weaver
Part way through the mountain of books I took out of the library I can also feel that part of what I am going through is simply a stage of women’s journey back to herself. I am always searching, always learning and already from writing this and sorting my thoughts the fog has starting to lift and I am feeling a little more content.
Let’s be kind to ourselves.