Let’s Talk about Money

I was scrolling through my Facebook news feed, and came across this article from the Huffington Post:

The Ones Left Behind
How do our governments and workplaces support, or fail to support, those of us who care for vulnerable children?

The article discusses how many parents of children with disabilities have found it extremely difficult to continue working, particularly once their children become teenagers, or young adults.costs-of-autism-infographic-450

I started thinking about all the financial implications that having a child with a disability can have, and the huge impact this has not just on the child and their family, but society as a whole, and even our environment. The impact will obviously be somewhat different depending on the level and nature of the disability of a child (and eventually, the adult), but please let me share what it is in our case.

  • I am a stay at home mother. I have not contributed to the workforce since I first became pregnant, and had not planned on doing so in a full-time capacity until my youngest child was in high school. Since having BuddyBoy, even that has become impossible – he will need full-time care for the rest of his life. I am not able to find myself a part-time job while he is in school, as we have had to pull him out of school autism-poverty2-29-638due to his disabilities. When he was at school, there were quite a few days when I had to go and pick him up early, or he went to school really late. Even a very supportive employer would not appreciate my constant absences. Hence, I am not able to pay taxes or put money towards my retirement – quite a problem given that by the time I officially retire, there will not be a pension for me to retire on.
  • Because BuddyBoy is now at home, my husband has had to reduce his work hours. I cannot pick up my two schooled children, as BuddyBoy often refuses to wear clothes, or get in the car. He will also not wait happily in the car while we are parked at school. And I certainly can’t get out of the car with him to pick up my children from the school door. My husband has to pick them up instead, and he also drops them off at school. Reduced hours equal reduced income, and he cannot apply for any promotional opportunities as they are full-time. red-line-going-downObviously this has hugely affected our immediate finances – to the point that we qualify for welfare payments, and are hence a further burden on society. It also means less money to put toward his retirement savings.
  • We have four girls and two boys. Under ordinary circumstances, we would have had two girls to a bedroom, and two boys, meaning we would need at least a four bedroom house. However, due to my girls’ disabilities, sharing a room poses an awful lot of problems (for them and their siblings), so even that has been difficult in the past. BuddyBoy cannot share a room – not only is he a danger to others, but he often doesn’t sleep (like last night when he was still wide awake at 4am). Our eldest daughter people-crammed-in-houseis living in a granny flat on our property, so we can still look after her and help her, but we still need six bedrooms. A bigger house equals a bigger mortgage, which has been a huge killer for us financially.
  • We generate a lot of waste. BuddyBoy used disposable nappies until he was six, at which point we switched to cloth nappies. Cloth nappies don’t clutter our waste disposal systems as much, but they use a lot of electricity, water and detergents to keep clean. He likes to spread his urine and feces, so I have a daily load of sheets to wash. He also loves to destroy things. Over the past year alone, thanks to BuddyBoy, we have had to dispose of tonnes of shredded paper, 2 pairs of pants, 4 t-shirts, 3 media players, 5 portable hard disc drives, 1 laptop computer, 2 DVD players, countless ornaments / keepsakes, far too many books, 4 mattresses, 2 bed frames, 3 iPad covers, 4 iPad screens, 1 iPod, 1 iPod cover, 1 rug, 4 sheets, 3 towels, wallpaper by the bagful, several pieces of crockery, too many toys to count, 1 table, several DVDs, two window flyscreens and one door flyscreen. We are still using the broken chairs, couches, jackhammered_cat_-_trash_can_linecupboards, etc that we can’t afford to replace. Our yard is littered with broken fences, retaining walls, garden statues, pots and plants that he has destroyed but we haven’t yet disposed of. And for the record – I don’t keep a written tally of what he’s destroyed, and I am not ‘blaming him’ – I am stating a simple fact.
  • We also throw away a lot of food. BuddyBoy reacts to a huge number of foods and other substances, so the range of foods he can eat is limited. Unfortunately he also has major sensory issues with food, so he will often pick at it and throw it on the floor, and then it goes into the compost. Some foods he will not eat, but he likes to mash – like bananas. So we have to hide them, and often forget that we’ve got them, and then they end up in the compost too. My kids each have different sensory issues, so there’s no such thing as cooking one meal for everyone, regardless of how much I would love to do that.
  • fundraiserWe are unable to fully support the school that our children attend. We do not have the finances available to be able to participate in every fundraiser or event that the school hosts. We are also not able to physically attend all events, as one of us has to stay at home with BuddyBoy – depending on his behaviour at the time, sometimes both of us were needed at home with him, so the other children have missed out. Even though I do not work, I am not able to volunteer my time at school as I have to be at home to look after BuddyBoy. I also miss out on valuable connections with my children’s teachers – this is particularly unfortunate for my Aspie daughter who is trying to cope with a hectic school environment and could use more of my support.
  • no-kidsMy children do not want to have children of their own. My neurotypical daughter used to say she wanted to have ten children. Now she does not wish to take the chance that she might have a child like BuddyBoy, so she has said she will never have any. Obviously she might change her mind, but the reality is that society needs to have children. Children are consumers who turn into tax paying wage earners. Taxes are what runs our society. If we don’t have enough children who are able to grow up to pay taxes, there will be no more funding for the arts, for sports, for social security, for Medicare. If you haven’t thought about the implications of this before, watch the movie Demographic Winter for some eye-opening facts. We also need workers to perform the jobs wcost-jobs-6e take for granted – not just Rubbish collectors and janitors, but also defense personnel, nurses and doctors, teachers and farmers. With a growing population of citizens who require care, this could turn into a huge problem within a very short time.
  • On a personal level, we are obviously broke. Broke from paying for all the broken items listed above. Broke from paying for various treatments, therapies, drugs and anything else that was meant to make BuddyBoy’s life (and ours) easier, more pleasant and sometimes just plain livable. Broke from buying food that costs more money because it’s ‘special’. Broke from buying a huge variety of clothes in the hope that he may wear one of the items (as well as replacing the ones he rips just because he can).empty-piggy Broke from having to buy heavy-duty goods and equipment because anything standard gets broken immediately. Broke because we’re always trying to find something that might engage him in an activity (other than breaking things). Broke from driving 2.5 hour trips to see doctors who prescribe medication that he reacts to. Broke because we can’t buy regular Nurofen because he reacts to the ingredients, so we have to have it compounded and pay $50 instead of $5. Too broke to afford therapy that may or may not be able to help him. The sort of broke that we will never be able to recover from, unless we win the Lotto in a big way. Guess we’d better find the money to start playing.costs-of-children-with-asd

Autism Networking

Caregiver-Support-Circle

When we had our first child, we knew there was something different about her. We tried a lot of things, saw a lot of professionals and got a lot of useless advice, but nothing really helped. Eventually we decided to just accept her as having a disability of some kind, and I say disability in a meaningful way, because her day-to-day life was affected negatively (as was ours). We made changes in our behaviour to accommodate hers, used a variety of tools to help her cope with life, started homeschooling, and fumbled our way through the first 15 years of her life.

She has three younger sisters – two of whom were ‘full on’ and had what we assumed was ADHD, but as we were homeschooling them, we coped with that. We also had two boys – the eldest was diagnosed with Autism at age 2¾, and while researching Autism, I found a lot of similarities between my oldest daughter, and descriptions of Asperger’s.

I finally had an answer to why she was so different, why life was so hard for her, and why all the advice we’d been given in the past just didn’t work for her. I then started doing more research (as I do) and it occurred to me that maybe she wasn’t the only one of my girls to have Asperger’s. We ended up with a diagnosis for three of my four daughters and it really felt like my world fell apart. Behaviours that we were hoping they would ‘grow out of’ or we could change if only we found the magic parenting key, we now knew to be part of their Autism. We knew that they each needed more help than we’d been giving them, and yet I felt unable to provide that, given that my son needed so much more.

Others around me didn’t understand what we were going through mentally and physically, and I felt terribly alone. I managed to attend a local Autism Support Group, and finally found other parents who KNEW, and I started to feel less alone. These parents were also dealing with the grief of an ASD diagnosis, struggling daily with their children who had behaviours that seemed bizarre and often made life difficult for the children and their parents. By then I had already been reading books about biomedical treatments, and I was looking forward to hearing from others what they had tried and could recommend.

Unfortunately, I was disappointed. The prevailing attitude was that you had to accept that this is how your children would be forever, that no therapy or treatment would make any difference and the sooner you accepted that and moved on, the better. When I tried to discuss books I had read or treatments I had researched, I was told I was wasting my time. I once again felt alone, even in the middle of a ‘support’ group.

One thing I have learned in life is that I don’t have the time or emotional stamina, to deal with a huge amount of negativity. I want to surround myself with positive people who will help me and support me, not naysayers who drag me down. Thankfully, I managed to find an online support group which was all about helping our ASD children with their many health challenges. Here I found other parents who were changing their children’s diet, and using a biomedical approach alongside mainstream therapies, in order to help their children. I was inspired by parents who had been doing the hard work for longer than I had, and even found a couple of local parents. I was no longer alone.

These days I am in a number of online support groups, and the things I have learned from other parents on the same journey are amazing. When new treatments or therapies start snowballing through the ASD world, I have friends who send me information, add me to groups so I can learn more, and sometimes even send me new things to try. My friends are all over the world, but we are all united by our aim of improving our children’s lives.

I occasionally manage to meet like-minded parents in my town, but the highlight of my social calendar is attending conferences (when I can afford to). Often these are the only times I can catch up with my best friends – those who are working hard in the trenches right alongside me. We hug, laugh and sometimes cry, and share our latest successes and failures. We swap notes on supplements, doctors, new foods, the best places to go for various hard to find items, and update each other on our children. Most of all, we are there for each other – to listen, to support, to care and comfort when needed.

We meet ‘new’ parents who are starting out on the journey, just like we did, and we help them just like we were helped by those who came before us. If you haven’t already found your support network, please do contact me and I’d be more than happy to connect. 🙂