Warning of rant ahead.. Not for the faint hearted or easily offended. Definitely FOR the mothers of remarkable boys (or girls) like mine.
SCENE: Family day out, carefully planned and excitement fever pitch upon departure to a special day just for the kids to enjoy. A "normal" activity.
What goes into having a "normal" day out for us? Glad you asked... We have to pack several food options due to dietary sensitivities, do a "social" story explaining and outlining exactly the proceedings of the day so the precious routine is not disturbed or deviated from unexpectedly which causes anxiety and potential for total meltdown. We explain several times how things will go and carefully create "visuals" of rules so the kids understand what is safe and what is unsafe during the outing. We usually have to bring at least one other adult to help us with our own children due to their complete lack of awareness about danger and penchant for escape, running and injury. A visual schedule is created so the children are warned that the change in schedule will occur and that we are planning a "fun" activity. ID tags are prepared in case the worst happens and one does actually get away from us and run away and cannot be found. Before anyone says, oh we all have to prepare family outings in advance and pack food etc... How many people have a bottle of liquid valium in their cupboard prescribed because their son had a meltdown/tantrum/fit on a plane that was so bad the family was escorted from the plane for their own safety because so many passengers complained and requested to move? How many of you actually pack that bottle of liquid valium in your bag "just in case" your son has another episode that dramatic and violent that you might have to use the valium? When you tell me you pack liquid valium in your bag "just in case" you can then tell me that your days out do not differ much from mine.
I've only resorted to using that little bottle twice and today was one of those times. I am firmly in the "no pharmaceuticals and no drugs" camp. Firmly. I hate anything artificial going into my kids systems.
Today's meltdown was so ferocious my husband and I had to pin my son down on the seat of the train carriage he was ripping apart and screeching uncontrollably in and force valium down his throat for his own safety. Whilst his meltdowns are not generally this bad anymore the threat is always there that it can happen. It used to happen EVERYWHERE we went. Playgroup, the shops, outings... EVERYWHERE.
The meltdowns were what led us to investigating what was going on and eventually getting the Autism diagnosis. We've worked hard to help Jackson with his anxiety and his meltdowns. J has worked hard too. Therapy after therapy, we all work hard. We will continue to work hard.
I love my children with all of my heart and work on creating awareness for them everyday. The awareness really needs to extend to what the family as a whole goes through in order for awareness to actually move to acceptance. Our exciting and "fun" "normal" day out was awful. Things were going well, really well for ages. Andrew and I looked at each other at one point and exchanged a glance that both us knew meant, "we are getting away with it. Look how far we've come!" We measure our days out by success rather than enjoyment I've now noticed. We get home and the relief from the unconscious stress is almost tangible. If no one ran away, went missing, was injured or wrecked many things, we declare success. We think we "got away with it."
Today it went pear shaped in a major way and the valium bottle was used. What a low point as a mother. There is nothing that can be said to take that away. It was a shit moment. If you can say you have medicated your child in full view of the general public, strangers, onlookers in order to keep them safe and keep them from smashing a window on a moving train to get off it then you can give me parenting advice or flippant platitudes anytime. If you have not experienced this or a similar moment, please do not dismiss me when I dare to express we had a bad day. Jackson had a meltdown.
My absolute pet hate..... "Oh don't worry, ALL kid's do that."
When I use the word meltdown I am not using it as an overstatement or exaggeration. I am using it to describe a total emotional breakdown in my child who is so overloaded and distraught he loses all control of his physical, emotional and cognitive abilities. A child in such distress he screams, kicks, hits, throws, cries, sobs, flails and destroys anything in his path in an attempt to communicate. His usual communication abilities (which are impaired but pretty good most days) are gone. He is without any ability to tell me what is going on for him. He is so withdrawn from me and his surroundings because he is overloaded by them he has gone within somewhere and is totally unreachable. A child so confused, anxious and desperate he has to be restrained for his own safety until it passes. Until he somehow finds it within himself to reconnect and calm down slowly with his own rituals and find comfort in his rigid routines that make him feel safe. Nothing I do makes him feel safe when he gets to that point and it kills me. Our family spends our life trying to make J feel safe, happy and calm so he never ever goes into meltdown because although it's physically draining for all of us and unpleasant for all of us, most of all we know it is horrendous for him.
Always there is the underlying stress of meltdown. Everywhere we go, every minute of the day. It's just under the surface of this family if you scratch it.
I totally understand all kids tantrum, all kids need to be watched when you go out for a family day, all kids have difficult moments. I understand. I am aware. I simply ask those who hear me say there are some difficult elements of living with Autism to be aware too. I'm not asking the world to wear a ribbon, a badge or carry a sign for me.
I am asking though that "all kids do that, it's "normal" be scrapped from the vocabulary of everyone I debrief to on a bad day.
Look honestly, all kids do not behave the same way as a child with Autism. They just don't. If they did then the child with Autism would not be picked on (don't even go there with, "all kids get picked on.. just don't go there)... The child with Autism would not need a teachers aide or a specialist class, the child with Autism would not attract disapproving looks from people who do not understand the way they are behaving. All kids do not do "that" whatever the "that" in question may be at the time of debrief.
If ALL kids did "that" the families of children with Autism would not be ostracized from the community, they would not see the invitations to socialise with previous friends dwindle and they would not receive respite for their child. Not a child free day here and there to recharge batteries or have a "date night" but respite. Respite from their child. Imagine how that feels when you walk out the door and leave your child in the hand's of a stranger appointed to your family by the government who recognises the need your family has for dedicated respite from your child and the stress just under that not quite scratched surface.... Not a fabulous feeling.
If ALL kids did "that" the divorce rate amongst the general married population (which is admittedly high at around 50%) would match the divorce rate of families with Autism which is at a staggering rate of 87%.
If all kids did "that" then the depression rate of mothers of a child with Autism which has recently been likened to the trauma induced stress soldiers feel after a war would not be higher than the rate of depression of a mother living with any form of cancer.
If ALL kids did "that" parents would not have to give up their careers to ferry their child to numerous therapies all aiming to help communication and functioning for their child. They would not have to apply for and be eligible for a carers allowance, a health care card or a disability car parking sticker so they can park close to the shops for the safety of their child should they go into meltdown in a car park.
If all kids did "that"........... then there would be no need for the word Autism or the need to tirelessly raise awareness that the word exists.
If ALL kids did "that" I might have more friends that phone me instead of friends I only catch up with online so I don't have to contend with the meltdown potential over a simple cup of coffee at a cafe or even a friend's house.
ALL kids do NOT do "that."
This is fine. I have broad shoulders and a big heart bursting with love and pride for every achievement, every good day we have, every day that we deem successful if not fun. I am not in the divorced or depressed statistics. I truly believe I am lucky to have the children I have.
I've said it before and I'll say it again.. I'd have 10 more just like them if it meant they were born into a family that will stand up and fight for them, raise awareness and speak out to work towards acceptance.
I write stories highlighting the strengths and abilities of these kids instead of highlighting the perceived weaknesses and disability of these kids but I am also known to call a spade a bloody spade!
ALL KIDS DO NOT DO THAT SO DON'T DISMISS ME BY SAYING THAT!
A nod of pretend understanding is better than a verbalisation of clear misunderstanding. Or.... say nothing and admit that sometimes you don't actually know how I feel (well actually how anyone in this situation feels).
Phew.. now that's off my chest just excuse me so I can get rested up to wake tomorrow and avoid meltdown, anxiety, stress and chaos so my boys feel safe. I may even hop on the internet to look up family friendly activities and whip up a social story, visual schedule and routine countdown calendar for our next family outing.
Yep.... We will definitely do it all again soon. Are we mad you might ask after reading the "bad day" experience above..... Gotta keep trying. Gotta keep aiming for fun not just successful or unsuccessful... You just have to pull yourself up by the bootstraps and try. Just go. You don't know if you don't go. :-)