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.:-)

 

Vaccine reactions in the news??!!

It has been all over my facebook feed today that Robert De Niro came out in defence of individualised medication. How scary is it that in this day and age, we’re not allowed to say that some medications will be good for some and not for others? Whether it’s paracetamol and antibiotics or vaccines, I don’t see how anyone could expect one drug to be safe for everybody. It’s like saying that because I can eat peanuts without any problems, it is perfectly safe to force feed a small child 1000 or more peanuts at a time.

My children did not become Autistic after a vaccination. I know that for a fact, because most of my children have not been vaccinated, and yet I still have four children on the spectrum. My second daughter had an adverse reaction to the two vaccines she received and we nearly lost her – as a result we have made the decision that vaccines in our case are not safe and carry more risks than getting the disease (which most of the time the vaccine doesn’t actually protect you from anyway). We do not rely on herd immunity, because we know that herd immunity does not work for vaccinated individuals and is not counting adults who are not up to date on their vaccinations. Instead we practice good hygiene, rely on a clean diet to keep our bodies healthy, and use alternatives to vaccines to help with symptoms of childhood illnesses.

Apparently some would see my children as cesspools of germs and disease, which they spread throughout the community and endanger other children simply by existing in an unvaccinated state. When my children had whooping cough (which by the way is not prevented by the vaccine) we stayed home so we didn’t get others sick. We were directly exposed to chickenpox by a friend who had it for the third time (interestingly enough she’d been vaccinated for it three times), yet none of us got chickenpox. If my son has a slightly runny nose or cough, I keep him home from school, so he does not spread his germs to others. I wish more parents would do that because I’ve often seen kids with green, snotty noses coughing and sneezing while still at school – regardless of your vaccination status, I don’t see how that can be healthy for anyone.

The day is coming (very soon) where our children will be no longer seen as our responsibility, but will belong to the government. The government will decide how we can give birth to them (and no doubt how many), what to feed them and to inject them with, how to school them, what jobs they should do and where they can live. Looks like George Orwell wasn’t that far off the mark.

Mandatory vaccinations are the beginning of a very slippery slope for humanity as a whole and I feel sad for those people who cannot see that.

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.

Swinging your ‘Willy’ in someone’s face

naked-baby

I am having one of those days today where I don’t want to hear about Autism being ‘neurodiverse’ and needing acceptance. I don’t agree that society needs to change in all aspects in order to accommodate the needs of Autistic individuals – because those needs can be at odds with the needs of others and there is no way you can meet everyone’s needs at the same time. It’s impossible to provide personal playgrounds for every child – far enough away from anywhere that the noise sensitive individuals won’t get upset. Tax payers can’t afford to pay for inclusive classrooms with only two or three children and four or five specially trained teachers, being held at varying hours depending on the individual’s sleeping patterns. Freedom of personal expression for one person often involves curtailing someone else’s freedom.

My son (like many other autistic children) loves to strip his clothes off. The sight of him sitting buck naked on his swing, flying high up in the sky with everything flying free, is not for the faint of heart. Should I just tell the parents at the playground that they should accept my son’s autistic preferences and how dare they question his sensory issues? What about when he is 16 or 36 and still feels the same – is he allowed to lie face first on the swing while naked and yell happily at the top of his lungs as he goes as high as he can, doing his froggy kicks?

Should it be generally accepted that when he feels the need, he can grab a handful of his poo and smear it on the wall in the shopping centre? Or throw it against the glass window of the shop to watch is splatter and slide down? Am I supposed to rejoice when he comes running up to me and wipes his poo over my clothes?

I don’t think the visitors of our local cemetery were impressed with the destruction of their loved one’s mementos on their grave sites, when my son expressed his pleasure at smashing things into a million pieces on one of his many absconding episodes. He feels a deep seated need for chaos and destruction – should my neigbours accept that as just being part of his Autism and let him destroy their property in the name of neurodiversity?

Please don’t tell me that we need to accept and embrace Autism. Accept the autistic individual – yes. Love and care for them as we would any other human being – yes. Provide them with the opportunities to grow and flourish in our society – yes. But accept Autism and the way it limits our children – no, I can never do that.

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.