A snapshot in time – somewhat blurry and out of focus

Last time I posted about our entry into the world of NDIS, and how I was waiting for our planning phone call. Well, the other day I got all excited because I had missed a call from the National Disability Insurance Scheme, but it turned out to be not for BuddyBoy, but about my application to have my eldest daughter receive assistance. I had submitted the requested medical report from her psychiatrist, and also sent in the psychological evaluation, and the letter from the paediatrician, confirming at age 15 that she did indeed have Asperger’s. Apparently they thought she might have outgrown it now, given that this was five years ago, so they were ringing to ask what her daily life looks like, to determine if she’s eligible for assistance. I’ll be notified in a week or two of their decision – so nice of them, isn’t it?

So we’re still waiting for that magical phone call for BuddyBoy. While we’re all waiting (and please don’t hold your breath while we are), let me give you a view into what our world looks like. I can’t describe it to you from BuddyBoy’s point of view, because he can’t tell me what it’s like inside his head, and my psychic powers only extend so far. I don’t think it’s a very happy place in there though, given the number of bruises, scratches and bite marks he inflicts on himself.

As BuddyBoy’s parents, we’re Exhausted. Tired and sleep deprived obviously, but this Exhaustion goes beyond that. We’ve been trying everything we could think of, and more things than we could afford, for the last six years, to make BuddyBoy’s world a happier place for him. We’ve failed. We would get small glimpses of hope, before everything became much worse. We’ve learnt not to have hope, as the pain of it being stomped on repeatedly was becoming unbearable. As the years have passed, his life has become more limited and harder to cope with, and he’s only eight, so we are literally living in dread of what next year will bring, let alone the next ten.

Our other children have lost their parents. We do not have the time, energy or money to parent our other children properly. We spend hundreds of dollars on weekly repairs and replacements for things that BuddyBoy has broken. We are so tired that we are often snapping at the other children when we should be hugging them, helping them with their homework, and spending time with them. They spend most of their time on their computers, because we can’t be ‘bothered’ telling them to get off – at least they’re quiet. All of their extracurricular activities have long been cancelled, because not only can we not afford them, but we don’t have the stamina to drive them there. One of us always has to stay with BuddyBoy, leaving the other exhausted parent to play chauffeur. We simply couldn’t do it anymore.

Our marriage has shipwrecked several times, and if it wasn’t for the now daily support workers coming in, it would have sunk long ago. The support workers are finally allowed to care for BuddyBoy without one of us being present – we had to get special permission from the government before that could happen. Go figure. So this Sunday, to celebrate my birthday, our entire family (minus BuddyBoy) will be going out for lunch. The last time this happened was when BuddyBoy was 1 year old. I’m looking forward to it, yet at the same time I am feeling guilty. Guilty because “our entire family” does not include BuddyBoy.

I have been unable to find a respite home that is willing to take BuddyBoy for a night. Please read that last sentence again and then think about it.           I have contacted our local respite home, another one an hour’s drive north of here which caters for more ‘needy’ children than our local one, and another one that specialises in the tough kids, two hours drive south of here. None of them are able to cater for him with their current layouts and supports. They all said they would have to look into what changes they could make, how they could add enough supports and staff, and work out exactly how to get government permission for all of that, and they would get back to me. Thankfully, I wasn’t holding my breath.

We can never, ever relax. We are always on duty. I cannot hang the washing out without one of my children, or a support worker, being in the same room as BuddyBoy, while I’m outside. We can’t all go and watch TV – one of us needs to be on BuddyBoy duty. I can’t cook his daily bacon and leave the kitchen while it’s cooking (I’ve become very good at timing bathroom breaks). If we do, the consequences can be disastrous. Like tonight, when he was once again climbing on the kitchen bench, and managed to smash a glass on the floor. And then jumped down from the bench and landed on the glass. We think it’s not in his foot anymore, but he won’t let us look. Or two weeks’ ago, when he was playing in the kitchen cupboards and broke two of them, so now my dishes have to live on the bench. We have a lock on the fridge that he can’t open (yet) but that doesn’t stop him from trying.

Every day, I spend at least two hours picking up pieces of food, paper and broken items from the floor. I have to mop the kitchen floor at least once a day as BuddyBoy likes to throw food on the floor, stomp on it, rub his hands through it, and then dance through the kitchen on hands and feet. Over the last week he’s been really hungry, so I’ve had to mop at least twice. We throw out at least as much food as he eats – he likes to rip and break food, and we can’t exactly withhold all food from him. He likes to tip cordial and juice bottles out to watch the resultant pools of liquid, or watch them go down the drain. He will snatch other people’s food, unpack the fridge if he can get access, and his particular favourite is to crumble cookies and squash fruit or eggs.

Every day, I have to mop BuddyBoy’s room at least once. It’s usually because he’s urinated on his floor and bedding (and that means a load of washing everyday) but sometimes it’s because he’s done a poo in there. Today he covered it up with one of his continence mats before he squished it. It obviously worked because neither his support worker nor Daddy realised it was there – it was only when Mummy came home and saw the poo on his knuckles that the jig was up.

There are days when I honestly think he doesn’t care about me, that he is totally oblivious to my presence, and that he’s unable to ever connect with anyone on an emotional level.

Other days he gives me smiles and even hugs, he lets me hold him and talk to him, or he’ll come and sit on my lap.

There are times when he is calm and quiet, happily watching YouTube. Times when he is loud and boisterous while playing chaseys with one of his support workers.

There are many, many times – hard on the heels of the other ones – where he is screaming, biting himself, throwing things, hitting his iPad, attacking his little brother and breaking anything he can reach.

We never know which BuddyBoy we will have at any moment – we prepare ourselves for the Worst and make the most of the Best while we can.

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. 🙂

 

Being an Autism Parent has taught me…

To cherish every little smile that is bestowed upon me.

That it’s okay to cry with happiness when your child actually looks you in the eyes.

How important it is to just be there – not doing, just being.

That Love is expressed in so many more ways than just through words.

The importance of nurturing my relationships and helping them to flourish – but only the ones that really count.

All is not always as it appears – especially when it comes to children having meltdowns in public places.

That sometimes you can feel so proud of your child that you might burst – even though they’ve only said one word.

How hard you have to fight to get your child the basic things in life.

That other people can be totally ignorant, clueless, self-centred, arrogant, rude and opinionated – and they don’t hesitate to share all that with you in front of your child.

To be grateful for sleep – any amount, anytime, anywhere.

The importance of what goes into a little person’s stomach – and how hard it is to get it in there in the first place.

That you can build up a tolerance to the smell, look and feel of poo – everywhere.

That other mothers on the same journey as you, make better friends, cheer squads, therapists, researchers, teachers, and marriage counselors, than anyone who you could actually pay to do those things for you.

The embarrassment of Autism parenting

Last year we were able to combine a trip to see our biomedical doctor with a holiday, and see some sights along the way. It had been many, many years since we’d done that, and with Autism along for a ride, it’s not exactly a smooth trip. We were pretty well prepared for most things, but still managed to stuff up completely on one instance.

We went to Currumbin Wildlife Sanctuary, and took BuddyBoy along in his pram – something he objects to most of the time now but thankfully at the time he was happy to sit in it. We decided to go on a trip on the small train that goes on a track around the Wildlife park, and get off at the other end to see the exhibits there. What we’d failed to factor in was BuddyBoy’s love of riding trains (something we hadn’t done for ages), and when we got off the train, he had a full blown meltdown.

We were struggling with the pram, our bags, the other children to make sure they all got off the train and were following, as well as an extremely strong little boy who desperately wanted to go back on the train. He was kicking and screaming (very loudly) and we were too embarrassed to even look up at the other people around us. I just wanted to disappear into the ground – feeling as if everybody was judging our child and consequently our parenting. The other children were embarrassed, too, and we did the best we could to try and remove ourselves from public scrutiny, but it wasn’t easy. Especially with the loud screeching going on. Finally he calmed down and we stopped to take some deep breaths.

Conventional parenting wisdom tells you not to give in when your child has a tantrum, as otherwise they will continue to manipulate others with their behaviour in order to get what they want. An Autism meltdown however has nothing in common with a ‘normal’ child’s tantrum and all rules go out the window. We were fully prepared to take our son back on the train, but unfortunately that was not possible – it had been mobbed by a large group of Japanese tourists and no seats were available. No matter how hard you try to avoid meltdowns in public, there are times it’s just not going to be possible.

We do use key phrases like “first, then” to help him understand what we’re doing, as well as a visual timer card. These work well as long as you use them BEFORE the meltdown happens – during a meltdown, he is incapable of hearing us, let alone understanding us or using reasoning.

There are other times when we get strange looks – like when we used to be able to take our kids to the playground (something BuddyBoy no longer allows us to do). He loves swinging, so would head straight for his favourite swing, and if it was in use he would try to pull off whoever was on there so he could have a turn. Which people probably would find amusing if he was one or two years old, but not at age seven. We get dirty looks from the other parents (perfectly understandable) and then have to stand there, forcibly restraining our squealing son while explaining to him that he needs to take turns.

Many times we will not correct our son’s behaviours, when we would have corrected them with the other children. As his developmental age is not the same as his physical age, we tend to parent him at the lower age – which for his seven year old body is closer to a two year old intellect. The gap between the two is getting bigger as he is getting older, as his intellectual development is not keeping pace with his age, so the differences are much more visible in public now. No doubt the strange looks will increase as he gets older.

I’d like Autism Awareness to educate people on the behaviours they can expect to see in public from children like mine, not just on the ‘special gifts’ that some of these children have.

On Being a Parenting Failure

Many, many years ago, I had a vague idea in my head of what ‘successful parenting’ would look like. To me, it was something that could really only be measured when my children were grown and living independent lives – judging the success of my parenting by the decisions my offspring would make. I realise that there are personality characteristics inherent in everyone that influence their lives, but I still had some nebulous concepts of what would showcase my parenting success.

Once I started having children, I was very focussed on the day to day stuff – like making it through yet another sleep deprived day with a screaming and tantruming toddler, but I still thought about “when they were grown up”. I knew that they would need to learn certain skills in order to be able to function in our world, and live contentedly, regardless of what they chose to do with their futures. We started homeschooling when our oldest child was four and a half, and teaching lifeskills has always been a priority for me since.

The only trouble seems to be that my kids don’t want to learn them. Nobody likes to spend time cleaning up or cooking meals when there are more fun things to be done instead, but it’s a part of life that we need to do them. Just like personal cleanliness – I understand that sensory issues mean that having a shower or washing your hair is not something you’d willingly do, but the rest of us really don’t want to smell you or look at you when you haven’t done it. So who is ‘right’ in that instance? The one who says, “it’s my body and I can’t stand the feel of the water on my skin”, or the one who says, “it’s my nose and I can’t stand the smell of you as it makes me feel nauseous”?  Surely there can be a compromise?

Then there is the Obsessive Compulsiveness that means every single thing has to be kept and can never, ever be thrown out. Old lolly wrappers, envelopes from letters long lost, bits of feathers from pet birds (though not even being sure which one), bits of rocks and broken shells, and a scrap of paper with nothing on it, but it must be important somehow – all these are amongst the many treasures that several of my children feel it absolutely necessary to keep for eternity. I have sensory issues, too, as well as compulsions of my own. I learned long ago that visual clutter makes my brain feel cluttered, so in order for me to function better and feel emotionally capable, I need to have a relatively tidy house with things behind closed doors.

I have literally managed to stumble through one of my children’s rooms only to have a full blown panic attack when seeing the ‘stuff’ that was all over the floor, the furniture and hanging out of the cupboards. I know that I am the one that has to go through and organise it – throw things out, store the treasures and do it in such a way that the child can continue with the system themselves. Only they never do. Not ever. I am a fabulous organiser, yet I have failed at instilling in my children the most rudimentary of organisational skills – because they simply don’t care. I’ve tried to get them onto organisational apps and other tools that I think might suit their interests – “no thanks, I’d rather be messy”.

Being a Christian, I also have certain expectations of my children as human beings. Yelling abuse at their siblings, hurting them and breaking things don’t really fit into those expectations. I find it difficult to cope with the at-times constant arguments, the explosive tempers that my children have, and the extreme stubbornness that leads to school refusal (even though we homeschool) or to do anything as simple as helping clean up their own mess (and woe forbid if I ask them to clean up someone else’s mess).

I find it exhausting to have to constantly follow a child around, reminding them to do their (very few) chores, or to have a shower, or to eat something, or to go to bed (oh, that’s a favourite one in this house). I have tried visual charts, I have tried Chore Packs (clip on cards with ordered chores to do such as brushing teeth), I have tried rosters. I have tried explaining, begging, pleading, guilt trips, paying them and yelling at them. Nothing works.

So looking at the likelihood of my parenting having raised some healthy, capable individuals, ready to cope in our society, I have to admit to a huge FAIL.

My oldest ‘child’ at 19 does not want to leave the house, talk to people, eat or sleep. I have no idea how she will ever cope in an employment situation, or any other situation that puts her in daily contact with the outside world. My second child is coping extremely well, except for the pressures that living in a house with four autistic siblings put on her mentally and physically. She has not had a normal childhood by any stretch of the imagination. My third child is the one refusing to do schoolwork and spends most of her time on the computer, regardless of what I say or do. My fourth child is doing well but has decided that what’s good enough for her older sister is good enough for her, so she is not doing schoolwork either. And please don’t ask her to have a shower or brush her hair. My youngest has an explosive temper that needs to be managed very carefully at all times, and I have wondered whether he has Pathological Demand Avoidance. And then there’s my autistic son, who needs 24/7 watching and care.

At the beginning of my parenthood journey, I had thought that someday I might be able to enjoy some ‘child-free’ time with my husband once the kids had left home, and maybe even have a few grandchildren. The reality is that we will always have at least one child at home – and regardless of how old he is, he will most likely remain a child in intellect and behaviour for the rest of his life. I don’t know whether the others will be able to cope in the world without our help, either. Child-free time would require the money to pay a carer – a luxury we simply cannot afford when we are struggling to put food on the table. The only one of my children who might like to marry one day is too afraid of having severely ill children, so the chances of my having any grandchildren are pretty slim.

No matter who I talk to, I am confronted with advice that totally contradicts my personal feelings, instincts and abilities. We used to attachment parent – much to the dismay of some Christian parents. We also tried ‘tough love’ as recommended by our pastor at the time – this backfired completely with the kids and left me feeling absolutely horrible as a parent. We did the usual daycare, preschool/school thing, only to find out that it simply didn’t suit our child. Then we were harassed by the various government departments and ‘professionals’ we were consulting at the time (none of whom ever mentioned the word Aspergers to us) as obviously all our issues were due to homeschooling. This was right after we were told that our oldest child had possible Attachment issues and we should work on that.

On the one hand I am told that my children need lots of exposure to the ‘world’ (aren’t we living in it already?) and that I’m not forcibly dragging them out enough to make them endure socialisation. At the same time, I should be cognizant of their sensory and emotional needs and not put too much pressure on them. Each child should apparently be receiving special attention, therapy and a whole heap of other things, which are simply not possible when you have six children and only one full time parent, as well as a budget that has been stretched beyond breaking point already. I’m their case manager – it is up to me to coordinate therapies, financial assistance (ha ha ha) and anything else they may need, as well as provide therapy at home, ensure a nutritious diet and that they are taking their supplements.

Is it any wonder I feel like an absolute failure? The pressure put on parents of children with Autism is huge – not just from within ourselves, but from well meaning friends, relatives, school teachers, and any professional we consult on behalf of our child. Add in the fact that a lot of us have health issues of our own which are exacerbated by the constant stress we live in, and it’s truly a miracle that we manage to survive each day.