When school isn't working anymore

Those of you who have been following my parenting journey for a while know that I've spent a lot of time advocating for my kids in their school environments. We've had varying levels of success over the past few years in terms of gaining appropriate supports for the kids within the mainstream schooling environment. 

We've worked with some amazing teachers who have given their all to help the kids. We've also met some teachers who just don't "get it" and don't seem to want to. For the most part though, school was working well enough for the kids. 

Until this year. 

So we made a decision. 

Without going into too much detail, we decided that both MasterL and MissGs social and communication support needs were not being met, and that MasterL in particular was so overwhelmed that his stress was having an affect on his ability to learn in the school environment. MissG was still learning well, and enjoying school, but she was exhausted, and told us she did not want to go to school anymore. 

It's not an easy decision to make, on the one hand, because deciding to homeschool your children requires a substantial commitment of time and resources.... and to be honest, was not what I had anticipated we would be doing right now. But, on the other hand, it was an easy decision because we do not ever want to see our kids so overwhelmed that they cannot cope. I realise some people are not as lucky as us to be in the position to bring the kids home, but for us right now, it works. 

MasterL is enrolled in a Department of Education Distance Education school. MissG is currently away from school on an approved exemption, and is in the process of "unschooling". We will shortly be registering with our state homeschooling authority. 

The changes in both children since leaving the environments that were so stressful for them are easily observed. They are both calmer, happier and more relaxed. Meltdowns, shut downs and periods of overwhelm are occurring significantly less often. They have the opportunity to retreat and self regulate as they need to. They can take time to be creative instead of constantly needing to be on alert. MissG particularly is enjoying setting her own pace and seeking out learning that engages her and is relevant to her interests. 

So over the coming months this blog will undergo another change of focus.... we will be talking about home education and how that works in our family, along with other things that catch my interest or set off my injustice alarm. This parenting gig sure is an interesting journey. 

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!

The grief ambush

I was reading a conversation thread in a group I'm in on Facebook, where people were sharing what they'd done on the weekend. Most of the comments were about how they'd been with family celebrating birthdays, or that they'd had a surprise visitor, or spontaneously gone on an outing. And they all said they'd had a great time, or enjoyed themselves.

And I realised something I hadn't thought about before.

I haven't truly enjoyed a family get together, a surprise visitor or a spontaneous outing for ..... ages. I mean, I've been in those situations and there have been moments of pleasure, or laughter, or contentment. But I am always super alert through the whole event- watching for cues that I need to intervene to support someone or make a quick exit- which is tiring and detracts from the experience because I am not fully focussed on the conversations in the room or the people there. I always leave feeling drained and tired. And sometimes wondering if it is worth the effort.

And realising this made me sad.

A little bit of the sadness was for myself, because I miss enjoying social situations.

A lot of the sadness was for my two ASD kids, because I started to imagine what their experience of life is like if their reaction to social situations has this effect on me. How much worse must it be from their perspective? I hate to think! I know a little bit of the theory of what it is like for them from talking with psychologists and adults with ASD. I don't really want to know exactly what it is like for them, honestly. I think it would be too distressing to really know. Whatever their experience is, they get to live with it for the rest of their lives. I can help them learn strategies to help them cope, with the help of the right people, but I can never make it completely better for them- it will always be coping.

I'm not sure yet what to do with this new realisation. It is making me uncomfortable. Sad. A bit angry. Mostly sad.

......many reasons to be thankful

I can feel a bit of the familiar recurring grief cycle creeping up on me. Tugging at me to sit with it for a while again, and feel sorry for myself. And this time, because I feel it coming, instead of it jumping up and grabbing me, I feel reluctant to give in. I don't want to grieve right now. I resent that tugging. I dislike the way that grief lurks in the shadows of my mind and waits for something as simple as a conversation about enjoying life to ambush me and cause me to stop everything to deal with it.

Maybe naming it and telling you about it will help me to walk by it this time. Maybe acknowledging that it lurks there will help to push it into the background again, without me having to spend time fighting it.

See, I think that while it is probably true that I have real reason for this occasional grief, that I have so much more to be thankful for. And that is what I'd rather be thinking of.

Pregnancy, paperwork and other distractions

I've not blogged for ages!! Sorry about that Everyone! Here's a bit of an update on major things that have been happening in our household.....
I'm pregnant. We are expecting baby number 6 in early February 2013. The kids are all very excited. Now that I'm past the 24 hours a day nausea stage, I'm getting excited too. Those first 3 months were long and trying. I feel very lucky to have my Wonderful Hubby around looking out for me, making sure I rest and eat, because to be honest there is so much else going on it is easy to forget to stop and look after myself some days.
I have been to so many meetings and appointments, and filled in so many forms in the past couple of months. The most irritating form I've had to face has been recently. The Principal of the Primary School and I have to fill in a form to apply to be considered eligible to apply for individual support funding for MissG next year. Yep- you read that right! We aren't actually applying for the funding- we have to apply to be eligible to apply. And there is a 30 page document that explains to you what sort of information they need. To be honest, I am not at all convinced we will be successful, either. The form is geared heavily toward children with either intellectual disabilities or physical disabilities like deafness or blindness. The fact that MissG needs full time Teachers Aide support to be successful at preschool counts for nothing. Nor does the information in the Occupational Therapists report describing her as a child with high support needs.
We are at the Psychologist almost weekly at the moment between MissG and MasterL. We love our Psychologist because nothing phases her. She helps us think clearly about the situations we face and is great at arming the kids with strategies that help them cope with situations they come across at school. 13 year old L is finding the abstractness of social interactions increasingly tricky as his first year in high school goes on. And he now has much less one on one support from the Teachers Aide he had been assigned, thanks to the "Every Student Every School" policy that the Government claims is making resources more accessible and equitably distributed.
I have been carrying on with my advocacy efforts in the background of everything else I do, attending meetings and just generally being the squeaky wheel in conversations around the place, letting people know what the real impacts of the changes to funding in schools are.
I am going to meet with our Federal member of Parliament in a couple of weeks. At least, I'm planning to. The appointment time has already been changed once by her since I booked it in, and I'm kind of expecting it to be changed again! It really does confirm my suspicion that hearing from people in the electorate is not a high priority when I get a call saying "something" has come up and she can't keep the appointment time we made. Along with the long-time-coming and very dismissive "thanks for letting me know of your concerns" response I got to my very detailed letter, I think it is fair to expect that not much will come of that meeting. However, I have to keep trying. As I explained to my 16 year old when she asked me why I am putting so much effort into this when nothing is going to change- at least when my Autistic grandkids ask me why there is no support for them in school I won't have to say,'there used to be, but when they took it away we all just sat there and didn't try to stop them'.
Anyway, that's a bit of an update. I'm going to try to keep  bit of a record of all the things we've done to prepare MissG for school, as it could be helpful to some of you. Aside from that, I'll do my best to blog more often over the next few months, but if you don't see much on here it's just because things are so busy! I wish the people who make these policy decisions actually had an idea of the real impact made by their number crunching solutions to what they think the problems are. I wish they could experience the results of their decisions the way those of us with kids needing extra support do. I used to have so much more time to spend actually being with my kids. Now I feel like I am so distracted by the work it takes to get them the help they need that I'm often not actually being any help. And that is frustrating.

The Weird Kid

More discussion last night with L about how school is going. Academically, he is powering on. Socially- not so much. His one friend has been absent for the past 2 days, so L chooses to be alone during recess and lunch times. This makes me a bit sad, but in the past I have told myself it's OK because he is happy that way, which kind of helps me feel better.

But it seems now that his desire to be alone if his friend is not there is causing problems. It's not that he couldn't go and hang around with other kids in his class. He'd be welcome to. He's been invited to. But he doesn't want to. They don't do things he wants to be involved in, so he prefers to be alone. This applies to everyone- even teachers. He told me that when he is by himself in the playground, people come up to him and try to talk to him. He thinks it's because they are being nice and checking up on him, but he says he finds it "creepy". He doesn't want people to come up and ask him if he's OK, or if he wants to join them, or even to just sit near him and say 'hi' when they do. He doesn't want to talk to them at all, even to say 'hi' back, because he doesn't know them, he doesn't understand what they want from him, and he just wants to be alone. His words. Some people have even placed a hand on his arm or shoulder as part of their greeting and he really *hates* that. So I asked him what he does if people approach him. He told me he usually doesn't answer them, and that he just walks away without looking at them.

E was listening to this conversation between L and myself. When L left the room she told me that she thinks if he does that too often he will become known as "the weird" kid and he will be picked on and harassed because kids will find it funny to see his unusual reaction. Which is exactly what I was worrying about as I was listening to him talk. She said some of her friends have already told her they think he is a bit strange.

Again, the difficulty of coaching him through this is that I am not there to see what these interactions look like, so I am not able to interpret the intentions of these "creepy" people and help him learn to interpret them appropriately for himself. I am so out of my depth.

I also worry about what is going to happen when L's one friend gets tired of playing the same things, and talking about the same things over and over again? I know that it is starting to happen. L says sometimes his friend wants to go and play with other people, and L doesn't want to join  them. Which is normal, and right. But sad for L, and for me. How long do we have before L is alone in the playground all the time? How do I help him gain confidence to be around people who have different interests to him, when he can already articulate that he knows people think he is "strange" (his words)?

The last thing I want is for my son to become known as "the weird kid". I talked about being weird in my post "The weirder the better", and I still believe there is nothing wrong with being unique or "strange" or  "weird", but right now this is causing my boy problems and anxiety. What should I do? If you have experience getting your own ASD teen boy through this stage, I'd love to hear from you.

Q&A 6: What would you change?

Time for the next question in my Autism Awareness/ Acceptance Month series. "If you could change one thing about the world your ASD child lives in, what would it be?" I asked this question because I have heard so many parents say that one of the hard things for Autistic kids is dealing with the world around them. Part of this I have put down to the fact that kids with ASD struggle to learn and understand social interactions and conventions. Part of it I have put down to other peoples reactions to Autistic type behaviours. So I was interested to see what parents would change for their kids. Here are the answers people gave-

Q&A 5: The hardest and the best?

The awareness raising questions for this post are:
"As a parent of a child with ASD what is the hardest thing about ASD for you?" and
"As a parent of a child with ASD what is the best thing about ASD for you?"

Q&A 4: What is your greatest need?

For April Autism Awareness/Acceptance Month, I am endeavouring to answer some questions to help those who do not have much experience with Autism understand more what it is and how it affects lives. To do this I've enlisted the help of some friends through my Facebook page and a couple of support groups I am part of.  Today, I am bringing some answers from parents of Autistic kids to the question "As a parent of a child with ASD, what is the greatest need you have?"

Q&A 3: What is a good way to teach my non Autistic kids about Autism?

On my Facebook page, I asked "As a parent of children who do not have ASD, or as a person who has little or no knowledge of ASD, what do you most want to know/understand about Autism?".  I've written two posts already responding to some of the questions people asked. This post will respond to those who wanted to know about how to teach their non Autistic kids about Autism, and how to support ASD kids who visit their home to spend time with their nonASD kids. 

Q&A 2: What can I do to help you and your Autistic children when we are around them?

When I asked.... As a parent of children who do not have ASD, or as a person who has little or no knowledge of ASD, what do you most want to know/understand about Autism?...  I got a few different answers. The most common theme was what do we do when we are around you and your kids?

Q&A 1: How do Autistic children see the world?

The first question I asked in my series of questions this April was- As a parent of children who do not have ASD, or as a person who has little or no knowledge of ASD, what do you most want to know/understand about Autism?

A great take on Autism

I don't have a lot to say today, but I do want to share something that someone else said.  I came across this great little video, made by a young lady named Rosie who has Aspergers Syndrome. It is called My Autism and Me and you can view it by clicking here. Rosie is my hero for the week!

Goals and how we try to reach them...

This question was asked yesterday, in a fantastic online support group for ASD families- How do you talk to your child and siblings about their autism, if at all? 

This is a significant issue in our house at the moment because both ASD kids seem to be going through really obvious social awkward stages at present. Here is the answer I posted: