Just another thing to add to the rest

I mentioned on the This is not what I signed up for Facebook page a week or so ago that we were having a difficult week. It's turned into a difficult month.

On top of the usual ASD related things we manage daily, Hubby's Bipolar symptoms have been increasing and causing him issues that have led to him needing to reduce his working hours.

As if that isn't enough we have also seen the addition of 3 other medical issues in the family over the last few weeks. I do my best not to complain, but I sure have struggled the last couple of weeks in particular to maintain a positive frame of mind.

Any one of the things we manage on its own wouldn't be that hard to deal with. Even a couple of them wouldn't be too bad.

But, honestly, I keep thinking to myself, how much more do we have to deal with here?!

I mean, every time something new comes up, it's just another thing to add to the rest. And usually involves another onslaught of paper work to be filled in. Not to mention the added emotional stress and anxiety load. Then I find it difficult to sleep, and so the tiredness cycle starts up..... and my negative thoughts sometimes get the better of me.

I struggle not to dwell on the thoughts of envy that others have so little to cope with, yet still manage to complain so much. It takes a lot of self discipline to keep my thoughts on the track of remembering that the hard times come and go, things always work out OK, and there is always something to be thankful for.

Sometimes I have to give in to a bit of a cry, and just let it all out for a while so that I can clear my mind and get on with things. But, at the end of the day- or maybe more appropriately, at the beginning of each morning- get on with things I must. So I do, most days with a smile on my face, even though I might be wondering what the next thing to add to the rest will be.

Sensory Processing Disorder...

I have mentioned Sensory Processing Disorder a few times in recent posts. Some of you may not be familiar with what this is, so I thought I would write a little bit about it. I will include some links to information, and then give you some insights into what SPD looks like for us.

Let's start with good old Wikipedia's definition (you can find the full Wikipedia article on SPD here)

Sensory processing disorder or SPD is a neurological disorder causing difficulties with taking in, processing, and responding to sensory information about the environment and from within the own body (visual, auditory, tactile, olfaction, gustatory, vestibular, and proprioception).

For those identified as having SPD, sensory information may be sensed and perceived in a way that is different from most other people. Unlike blindness or deafness, sensory information can be received by people with SPD, the difference is that information is often registered, interpreted and processed differently by the brain. The result can be unusual ways of responding or behaving, finding things harder to do. Difficulties may typically present as difficulties planning and organizing, problems with doing the activities of everyday life (self care, work and leisure activities), and for some with extreme sensitivity, sensory input may result in extreme avoidance of activities, agitation, distress, fear or confusion.

SPD Australia says,  

SENSORY PROCESSING DISORDER (SPD) is a complex neurological condition that impairs the functional skills of 1 in 20 children. People with Sensory Processing Disorder (SPD) misinterpret everyday sensory information, such as touch, sound and movement. They may feel overwhelmed by sensory information, may seek out sensory experiences or may avoid certain experiences.

People with SPD experience their world as either Hypersensitive (over reactive, sensory avoidance) or Hyposensitive (under reactive, sensory seeker). They may also present with motor skill problems. They may react with strong emotional behaviours and experience what may be described as ‘melt downs’.

While it is estimated that 1 in 100 children in Australia is diagnosed with Autism, and we see above that 1 in 20 have SPD, it is interesting to note that the American Psychological Associations proposed diagnostic criteria for Autism Spectrum Disorder (see here) in their soon to be finalised DSM-V will include,

"Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; ......."

which seems to acknowledge that SPD is often something that goes with Autism. Nevertheless, it is obvious that SPD occurs in many more children than Autism does. 

In our household, one of the Autistic kids has SPD (MissG) and the other doesn't (MasterL- he has some sensitivities to sound and touch, but nowhere near the difficulties that G has). Because the SPD diagnosis for MissG goes with an Autism diagnosis, my experience with SPD is intertwined with Autism, as MissG's responses to sensory input and overload are influenced by her Autistic tendencies. I mention this because it serves to remind us that although people share a diagnosis, the symptoms they display and their coping mechanisms can make them look very different from each other in some ways while appearing similar in others. 

So- what does SPD look like for us? (If you want to read over previous posts I have written on or around the topic of SPD you can go here and here.) MissG is mostly Hypersensitive- she over reacts to sensory stimulus and tries to avoid it. The only places on her body that she can be Hyposensitive are her mouth and her feet. This made things interesting when she was younger as everything went in her mouth, and she could be found licking all sorts of things that made me cringe! When she was old enough to be walking on her own in public places (instead of being carried in the back pack or riding in the stroller) the sensory seeking with her feet became problematic as she wanted to step on every single change of pattern, colour or texture she came across.

Hypersensitivity has been a big issue for our family. We have all learned along the way what things might set MissG off, and all to various extents do things to avoid triggering her.

When she was younger, and before we had such an understanding of SPD and what sort of things she struggled with, we went through a period of time when major meltdowns were a normal part of our day. It was common to have MissG experience sensory overload 5 or more times a day. To the "untrained eye" these meltdowns would have looked like tantrums. They could be triggered by things that seemed very small, and so looked liked over-reactions. Each meltdown would last between 5 mins and an hour, and could include crying, screaming, hitting, kicking, thrashing, throwing herself on the ground, throwing objects. Usually she would lose the ability to express herself verbally. If the meltdown was caused by an injury (as small as being bumped or as big as a cut that required medical attention) she would put her hand over the injured area and either huddle herself up silently or scream as if she had a broken bone. No one would be allowed to look at or touch the injury.

These days things are a bit better. Strategies we have used to get to this point are:

*organising a "sensory diet" that provides desirable input, including time for swinging, time for bouncing, plenty of things to touch (soft toys, squishy toys) and things to put hands in (sand, uncooked rice and dried beans), foods to crunch on, things to sip through a straw (including thick things like custard), time for water play (you could use any kind of sensory experience your child likes - some kids like playing in shaving foam or paint or goo.....  MissG loves water play). We also have some more "official" sensory tools recommended by the OT that MissG likes, including a body sock, some yoga/exercise balls, and fidget toys.

*allowing self initiated zone out time- for MissG this is often iPad or tv time, sometimes it is listening to her favourite music, and some times it is time alone in her room when she will choose to sit in the enclosed space of her bottom bunk bed and play quietly with a favourite toy.



*offering the choice to wear her ear defenders as a way of regulating the sensory input she is exposed to


*enforcing some sensory deprivation time- sometimes we insist MissG take some quiet time using her ear defenders, or alone in her room inside her tent or in our room under our doona.

It is a bit of a trial and error thing discovering what works best for each child. What works for MissG may not be what works for your child. Input from a good Occupational Therapist can be invaluable. 

The key thing I wish someone had been able to tell me a couple of years ago when we were in the midst of numerous meltdowns a day is this- it will get better! You need to do some detective work to figure out what things will help support your child's sensory needs, but once you have done that, things will be better!

If any of you reading this think of things I've left out, or have suggestions for others coping with SPD, feel free to leave a comment!

Misunderstandings and misconceptions

I have a google alert set up that forwards me an email each day containing links to news articles related to Autism. Todays email contained 47 articles. 22 of them were about Autistic children being prone to wander off/ run away/ bolt/ whatever you want to call the terrifying experience of having your child vanish.

The first article I read (here from Sky News Australia) said,
"Almost half of US children diagnosed with autism spectrum disorder (ASD) wander away from safe places, and about half go missing long enough to alarm their parents, a new study has found." (OK- firstly, ANY period of time is long enough to alarm me if my child suddenly vanishes, but we'll let that one go).

It went on to quote
"'Children who were reported as missing were older, more likely to have experienced skill loss and less likely to respond to their name. They were also more likely to have lower intellectual and communication scores than non-missing children,' Law wrote."

I have an issue with this sort of reporting. You might think it is pedantic of me, but I feel that reporting like this just reinforces the stereotype that Autism equals dumb. In so many cases, this is just not true. Being unable to communicate in socially conventional ways does not mean a person has lower intellectual capacity.

It's probably unfair of me to pick on Sky News, but there were too many articles on this to go through them all. I know that in this article the writer is just reporting (loosely) what research found, and I guess the fact is that in the 1200 families surveyed for this study that is what they found. But the problem I have is that reporting like this, where an initial study (in this case they say it is the first study of its kind in the US) finds something, then all the popular media do a quick review of it, the general public base their beliefs on this watered down second hand report. Scientific process dictates that this finding now either supports or refutes a theory and further research should go on to build more theories around the findings, and seek to replicate them or disprove them. Taking the popular media report on an initial research finding causes misinformation and misunderstanding to circulate around the general population, and we end up with an assumption that Autism is something it is not.

My daughter "wanders". Her IQ has been assessed to be in the high range of what is considered normal. Her recent speech pathology report states that her receptive and expressive language are both in the high range of what is considered normal. She is Autistic. She has Sensory Processing Disorder. When she becomes anxious or experiences sensory overload she disappears for a while. If you didn't know her and you found her in her hiding spot she would likely behave in a way that you would find challenging. She probably wouldn't speak to you. She likely wouldn't respond to her name. She may try to hit or kick you. This does not mean she is not as smart as you!

We need to be so careful with our assumptions and with the stereotypes we choose to accept and perpetuate. Realising that the label my children have been given can act to cause misunderstanding in others about who they are makes me more aware of the misconceptions I must hold about others. And that is truly a challenging thought.

A letter to my past self

Dear Me 10 years ago,

I know you think you have this parenting thing sorted out pretty well, but I need to tell you some things, because a lot is about to change for you. You have three great children, and you have found them challenging at times, but you are soon going to experience a different side of parenting that you haven't known about before. It is going to challenge you in ways you can't imagine, and it is going to make you into a different person. You don't know it yet, but you are going to be the parent of children with a disability. Right now those words freak you out. But take a deep breath, and keep reading.

Firstly, listen carefully when I say- everything is going to be OK. You are going to be bewildered, exhausted, at a complete loss for the right way to go, lonely, frustrated and frightened. You will grieve, rage with anger and give up hope. You will meet Autism. You will find your feet again, pick yourself up and you will go on. And you will be OK. So will your children. The ones you know and the ones you are yet to meet. You will all be OK.

You will need to learn to look after yourself. You don't know it yet, but you have a tendency to take on a lot and do so much that you end up not coping with anything. The qualities in you that cause you to do this are in themselves not bad. You don't need to change them. You just need to learn to pace yourself, to say "no" sometimes, and to recognise that your needs are as important as other peoples needs. If you are going to have what you need to be there for your family, you need to look after yourself well too.

You will need to learn not to worry what others think of you. In the past you have gone to great lengths to keep others happy and to do what you think they expect of you. Firstly, you need to realise that you are sometimes wrong in your assumptions about what others expect. Spending a lot of time doing things based on assumptions is counterproductive and ultimately a waste of time! Secondly, it is just not healthy to run your life this way. At some point you will need to shift your focus from trying to keep everyone else happy to looking after your own needs and the needs of those in your household.

You will need to learn to trust your instincts and be prepared to stand up for your kids. As time goes on you are going to find that you will need to be a strong advocate for your children. There will be times when others do not understand what your kids need and you will have to stand up and tell them. Sometimes they will ignore you the first few times you try to tell them, and you will have to step out of your comfort zone and do and say things in ways you hadn't tried before. Sometimes people will think you are pushy, rude and an over-reatcor. As long as you are not disrespectful towards others, this is OK, and you can rest assured they will get over it. Trust your instincts- if your gut tells you your kids need you to stand up for them- do it.

Above all, don't have regrets. You are going to take time figuring all these things out. You will probably read this letter and disregard most of it, because, let's be honest.....no matter what people tell us we can't really understand it until we experience it ourselves. If you take nothing else away from reading this letter please remember, you will make mistakes, but you needn't regret them. You will take on too much and burn yourself out. You will have to swallow your pride and ask for help. You will need to take antidepressants for a while. Don't waste time regretting it when you don't get things right the first time- it is all part of the process you need to go through so you can own who you will become. You will get there, and you will make some great decisions as well as some you will have to fix up later. You will have lots to be proud of. Please remember when you are feeling low that you are also doing your best. No one can expect more from you than that. Not even you.

And rest assured, that in 10 years time, even though you have made mistakes and taken a long time to learn things the hard way, I will be there looking back on you and smiling, grateful for who we have become.

from You 10 years later.