Today my heart broke
Into a million pieces
As I watched you come last
In your running race
I saw from the start
That things weren't going well
That just like last year
You would come out broken
I could see it written
All over your face
The pain, the disappointment
At finishing last in the race
You tried to hide
The tears in your eyes
You told me to go away
And I was not surprised
It felt like the worst thing
To have put you through
You don't like sports
And it's a challenge to do
I wished I hadn't
Made you come along today
Forced you to perform
In some very unnatural ways
I tried to be positive
When we got dressed
We picked out some clothes
In green we were clad
I told you every point counts
For the house you are in
That you helped your team
Despite how it seemed
But really there were no words
To take away that moment
Because I could see your heart also broke into
A million pieces
Tuesday, November 12, 2013
Thursday, July 11, 2013
Behind Closed Doors
One day I want to write a book with the same name as the title of this post - Behind Closed Doors. It will be about our day to day lives - everything we do (and don't do) so Amy can "fit" into the world out there and maintain an emotional equilibrium as much as possible.
I feel autism is misunderstood by the greater community a lot of the time and that Amy doesn't match with what many perceive as "real autism."
It seems some think she's just a bit autistic, not that far down or up the spectrum (depending on how you view the spectrum), should have been diagnosed with Aspergers or perhaps isn't autistic at all. (Oh really).
These interpretations mean the behind-the-scene stuff is not taken into consideration at all.
The thing is, just like neurotypical children, autistic children grow and change. They reach milestones, mature and simply get older. So the older Amy gets - the more she appears to be just like other children. And she is like other children in many ways of course. But there are differences. Many of them unseen and understood only by her parents.
Some behaviours have dropped off - though not completely. They do seem to be lurking in the background if Amy's day or week isn't managed in the way it needs to be. She is a lot more self-aware and perhaps internalises her anxiety and many emotions (very typical of autistic girls) more than ever. But her true feelings eventually come out at home; in some shape or form.
Amy's doing well at school and in many ways is a success story as far as inclusion and mainstreaming goes. But Amy's sensory issues and high anxiety levels constantly need to be managed. This means there needs to be a lot of downtime/quiet time and days and weeks cannot be too busy.
Every now I then I mix it up - just to see if we can branch out a bit from what can feel like a very small world. Sometimes that goes fine. We just have to balance it with even more downtime/quiet time. But sometimes it doesn't work at all and plans backfire. Spontaneity doesn't exist in our household at all.
Friends have pretty much become conditioned to not drop round out of the blue. It happens on occasion. But most of the time the few social interactions we have with others are planned.
We went away to Hanmer Springs a few weeks ago as I felt, we did need a shake up in the form of a change of scene. We couldn't have timed it better. We arrived in Hanmer Springs in time of a huge dump of snow. We even woke up to snow falling on the Saturday morning! Amy loved it and wanted to go and play in the snow as much as she could (it can be a challenge to get her outside, away from the safety and familiarity of her screens).
Trips away like this allow us to feel like a "normal" family for a few days - having fun, going on adventures.
Amy has been doing jazz since she was six years old. She started with ballet at the age of five (her idea) but moved on to jazz after seeing the jazz girls on stage at the end of the year production. She's been in three end of year dance concerts all up (one for ballet and two for jazz) and two mid-year dance productions. (one was this week). She's also completed two medal tests. All this is quite remarkable for a child who struggles with sensory overloading every single day. But she continues to want to do it and I've never pushed her - only encouraged. She has the opportunity to do her first jazz exam in September and her dance tutor has recommended she has an "assisted pass" which basically means she will pass regardless of her performance. Amy made the choice to enrol for the exam and the assisted pass has taken some of the pressure off.
She's had the same dance tutor for over three years (minus a couple of terms in which she tried hip hop with another tutor and then volleyball at school) and I trusted her opinion and recommendation around going with the assisted pass. She has been both supported and understood and this has meant she'll keep going with jazz for now.
To have Amy in the dance production earlier this week she needed to have the afternoon off school to decompress before heading off to jazz for two hours of waiting, watching (the rest of the production) and then going on stage towards the end of the production. Amy did great. But she was exhausted and it did throw off her week. I didn't worry about jazz last night as two nights out during the last week of term would have been too much.
It seems to be the way things go around here - when we do something extra outside of the usual school week - a bit of time is taken off. Even this term Amy has had a few mental health days or afternoons. Term Two (the Winter term) is certainly the term in which she gets the most tired.
I have learnt over the last couple of years that although Amy needs the school holidays to rest; she also needs to be kept relatively busy. If I don't put things in place before the holidays start - then she is unlikely to want to go anywhere and we end up being at home a lot. Too much.
So I've used both the local autism holiday school programme (only one morning a week) since last year and her school holiday programme this year. She seems to enjoy both and gets to mix with other children and try new things then comes back home and blobs. I mix with this up with a few quiet days here and there where we might just catch up with one friend or do our own thing. We have extended family coming to stay in the second week of the school holidays and although Amy enjoys these visits; her routine is affected and she doesn't get the downtime she needs to stay on equilibrium.
I've been looking into this whole notion of downtime a bit more recently and came across the term "shutdowns" which is simply another term for what I've described as downtime. It's a way of managing an overload of stress/sensory issues and if not respected or given can lead to meltdowns. It is because we allow the shutdowns to occur at home on a daily basis; that the meltdowns are minimised.
I went to a seminar a few years back with Tony Attwood and he said for many autistic children they need four hours of downtime to every one hour of stimulation! Which explains why it is that Amy takes so long to unwind after her school day every day. And why the afterschool activities have to be kept to a minimum.
We do okay. But our lives are structured around Amy's "sensory diet". It is not until others come to stay with us or we stay with others that we are able to see just how much goes into keeping Amy's equilibrium maintained behind closed doors.
I feel autism is misunderstood by the greater community a lot of the time and that Amy doesn't match with what many perceive as "real autism."
It seems some think she's just a bit autistic, not that far down or up the spectrum (depending on how you view the spectrum), should have been diagnosed with Aspergers or perhaps isn't autistic at all. (Oh really).
These interpretations mean the behind-the-scene stuff is not taken into consideration at all.
The thing is, just like neurotypical children, autistic children grow and change. They reach milestones, mature and simply get older. So the older Amy gets - the more she appears to be just like other children. And she is like other children in many ways of course. But there are differences. Many of them unseen and understood only by her parents.
Some behaviours have dropped off - though not completely. They do seem to be lurking in the background if Amy's day or week isn't managed in the way it needs to be. She is a lot more self-aware and perhaps internalises her anxiety and many emotions (very typical of autistic girls) more than ever. But her true feelings eventually come out at home; in some shape or form.
Amy's doing well at school and in many ways is a success story as far as inclusion and mainstreaming goes. But Amy's sensory issues and high anxiety levels constantly need to be managed. This means there needs to be a lot of downtime/quiet time and days and weeks cannot be too busy.
Every now I then I mix it up - just to see if we can branch out a bit from what can feel like a very small world. Sometimes that goes fine. We just have to balance it with even more downtime/quiet time. But sometimes it doesn't work at all and plans backfire. Spontaneity doesn't exist in our household at all.
Friends have pretty much become conditioned to not drop round out of the blue. It happens on occasion. But most of the time the few social interactions we have with others are planned.
We went away to Hanmer Springs a few weeks ago as I felt, we did need a shake up in the form of a change of scene. We couldn't have timed it better. We arrived in Hanmer Springs in time of a huge dump of snow. We even woke up to snow falling on the Saturday morning! Amy loved it and wanted to go and play in the snow as much as she could (it can be a challenge to get her outside, away from the safety and familiarity of her screens).
Trips away like this allow us to feel like a "normal" family for a few days - having fun, going on adventures.
Amy has been doing jazz since she was six years old. She started with ballet at the age of five (her idea) but moved on to jazz after seeing the jazz girls on stage at the end of the year production. She's been in three end of year dance concerts all up (one for ballet and two for jazz) and two mid-year dance productions. (one was this week). She's also completed two medal tests. All this is quite remarkable for a child who struggles with sensory overloading every single day. But she continues to want to do it and I've never pushed her - only encouraged. She has the opportunity to do her first jazz exam in September and her dance tutor has recommended she has an "assisted pass" which basically means she will pass regardless of her performance. Amy made the choice to enrol for the exam and the assisted pass has taken some of the pressure off.
She's had the same dance tutor for over three years (minus a couple of terms in which she tried hip hop with another tutor and then volleyball at school) and I trusted her opinion and recommendation around going with the assisted pass. She has been both supported and understood and this has meant she'll keep going with jazz for now.
To have Amy in the dance production earlier this week she needed to have the afternoon off school to decompress before heading off to jazz for two hours of waiting, watching (the rest of the production) and then going on stage towards the end of the production. Amy did great. But she was exhausted and it did throw off her week. I didn't worry about jazz last night as two nights out during the last week of term would have been too much.
It seems to be the way things go around here - when we do something extra outside of the usual school week - a bit of time is taken off. Even this term Amy has had a few mental health days or afternoons. Term Two (the Winter term) is certainly the term in which she gets the most tired.
I have learnt over the last couple of years that although Amy needs the school holidays to rest; she also needs to be kept relatively busy. If I don't put things in place before the holidays start - then she is unlikely to want to go anywhere and we end up being at home a lot. Too much.
So I've used both the local autism holiday school programme (only one morning a week) since last year and her school holiday programme this year. She seems to enjoy both and gets to mix with other children and try new things then comes back home and blobs. I mix with this up with a few quiet days here and there where we might just catch up with one friend or do our own thing. We have extended family coming to stay in the second week of the school holidays and although Amy enjoys these visits; her routine is affected and she doesn't get the downtime she needs to stay on equilibrium.
I've been looking into this whole notion of downtime a bit more recently and came across the term "shutdowns" which is simply another term for what I've described as downtime. It's a way of managing an overload of stress/sensory issues and if not respected or given can lead to meltdowns. It is because we allow the shutdowns to occur at home on a daily basis; that the meltdowns are minimised.
I went to a seminar a few years back with Tony Attwood and he said for many autistic children they need four hours of downtime to every one hour of stimulation! Which explains why it is that Amy takes so long to unwind after her school day every day. And why the afterschool activities have to be kept to a minimum.
We do okay. But our lives are structured around Amy's "sensory diet". It is not until others come to stay with us or we stay with others that we are able to see just how much goes into keeping Amy's equilibrium maintained behind closed doors.
Monday, April 1, 2013
Autism burn-out
Today is World Autism Awareness Day. Yesterday I thought I might do something to "celebrate" - paint my face blue or bake some cupcakes topped with blue icing. Even make a badge. But it's the end of a long Easter weekend sprinkled with meltdowns and we're all spent in this household so I'm just going to go with what's on top...
In the same vein that autism looks different for every diagnosed child; every parent will have a different journey with autism. But, I do believe, that behind every child diagnosed with autism, lies a parent or parents with a broken-heart. I don't think this can ever be under-estimated. It is not fair to compare different "shades" of autism and to claim that just because one child is more verbal or appears more social than another child say with classic autism (that the general population is very familiar with) that their journey is easier for them - or their parents. Every parent with a child with autism is devastated - if not by the diagnosis itself - by the journey they went on to get that diagnosis and then of course life post-diagnosis.
Now my daughter is eight and well and truly immersed in school, it is frequently assumed by some that we're done with autism. That actually, she just had it for the first five years of her life and now she's cured.
I do not believe that autism can be cured personally. I do believe it can be controlled, managed and understood. I believe schools and other environments can set things up to make life easier for a child with autism. But it's for life. It may look different as children grow up and mature - but it will always be there, underneath the surface.
I really feel for the families whose children with autism require a lot of intervention and help - perhaps permanently, perhaps for the rest of their lives. My daughter is not one of those children - her autism is of the invisible variety. The kind that doesn't get funding easily, the kind that is dismissed as not being "true autism." Although she has three different kinds of help at school right now; she spends large parts of her week without extra support in place.
For the first five years of our autism journey I fought, I explained, I justified and I advocated. This in itself was an extra job on top of managing a little person with autism. Last year everything came to a head and I had to give up the fight. I had to accept that not everyone will understand my daughter's autism the way I'd hoped and liked them too. I had to accept that I was burnt out and it was time to retire from advocating for autism. So I stepped down from my four year local position as a committee member with Autism New Zealand and I applied for full-time study for this year.
I am now three months into my study. A lot of my energy and time goes into that now. But autism lives on in our household and we certainly still go through some rocky phases. This Easter was one of them. After eight weeks of attending school full-time plus three afternoons last week at a friends house so I could start my first week of "teaching experience", there were meltdowns a-plenty. My daughter needs downtime and she hasn't had as enough of it as she needs over the last few weeks. Home is her sanctuary - where she can let it all out.
I read this week about "autism burn-out" which occurs when those with autism try to conform and fit in - and then tire from their efforts. I certainly know this to be very real for my daughter. She is aware of her differences and will try to hide them - she will keep up with her peers and no longer wants extra breaks put in place for her in the classroom. She will ask for breaks at school at times now, when really needed.
But it exhausts her - doing the everyday normal kid stuff. There are so many things we don't do because most weekends are about recovering from her school week. She simply doesn't have the energy a lot of the time to do much except blob in the weekends. Attending a BBQ as a family means leaving early. In fact, social gatherings aren't regular occurrences in our household.
I think in my phase as an advocate for autism, I felt pressured to paint a merry picture of autism - to demonstrate that life can be almost normal with the right strategies put in place. Although this is true in some respects, in many ways our home life isn't normal at all. This is of course the side of autism that no-one sees in our circle of friends and family - the routines, the quiet time, the repetitive DVD watching, the spinning in circles, the flapping of hands, the meltdowns, the sleep disturbances, the nightmares, a child who grapples with both depression and anxiety at times; a child with potential mental health issues.
Not only do I believe the child with autism has autism burn-out - but so do the parents. Eight years of sleepless nights (they may not be every night now - but there are still phases), living with a child who develops agraphobia at times and will not leave the house (especially during school holidays), and managing friendships that fall over is tiring.
I love my daughter. Of course I do. But I also suffer from autism burn-out. There isn't much more I have to give at this stage to the cause. So that is why I've taken the year off to study - to have a different focus. But sometimes I have to face reality and address the bigger issues when they arise, as they have this weekend. It is simply my job as my daughter's mother.
My husband and I went away for our first ever night away together since our daughter was born in February - one night and it was amazing. We haven't had a date since. We have respite care - we need to use it. Sometimes it is tricky to fit it in (especially with full-time study for me) but it is needed. I know behind closed doors there are many parents of autistic children who desperately need a break - to perhaps get out of the house and do something they can't do with their child with autism. Note to self: it's time to book in another date for ourselves.
Sunday, October 21, 2012
You Know You're A Mum Of A Child With Autism When...
1. Repetition in any shape or form is just a part of daily life.
2. Teachers (want to) run for cover when they see you.
3. Sleeping eight hours in a row is a rarity.
4. Sleep-deprivation has become a way of life.
5. Mental health days are a regular occurrence out of necessity - for mother and child.
6. Being afraid of the strength of your own child mid-meltdown is very real.
7. Every day is organised to prevent meltdowns.
8. After every meltdown in which you have been physically and/or verbally attacked, you find somewhere quiet to shed tears of shock and pain.
9. You have to explain autism to your child and hope that they will embrace their differences.
10. You are the only Mum in the playground whose child cannot go on after-school play-dates because they will get too tired after a full day at school.
II. Birthday party invites are often not reciprocated.
12. Your child hides from her friends at her own birthday party.
13. Those who are meant to help sometimes get it wrong.
14. Your own world and social life becomes very small to accommodate the needs of your child.
15. You haven't been away with your husband for a night since your child was born.
16. Catching up with friends and family is difficult.
16. Options for part-time work are restricted because your child often needs time-outs from school.
17. A significant part of your week is spent attending IEPs, having meetings with teachers and/or specialists, writing social stories, attending workshops and/or researching autism.
18. Sue Larkey is one of your friends on Facebook.
19. You have made crucial connections with other Mums with children with autism. But you don't see each other much, because of the needs of your children.
20. Your friends who are parents of neurotypical children think you're a saint, but behind closed doors you know that's not always the case.
21. You need more sleep than your child does.
22. You've been judged more times than you can remember.
23. When your child appears to be "high-functioning", you're labelled as an anxious and over-protective parent for preempting situations.
24. You envy how easy it is for other parents to just drop their kids off with other people.
25. Some days it feels as if you are living and breathing autism.
26. Some days you are all autismed-out.
27. You wonder if you've perhaps become autistic yourself.
28. You remember your child's milestones by the different "special interests" ie: obsessions, she's had over the years.
29. The social difficulties make you want to cry.
30. Even though you may have chosen to be open about your child's autism, it is still hard to hear your child say "I have autism" to other people.
31. You wonder what the future holds and try to be positive - but the workshops you attend and material you read warn of further challenges you may have to face.
32. You hope your child loves and accepts herself and are at times mystified as to how to achieve this with all the day to day challenges she endures.
33. Because you've carefully managed your child's autism, many who see her outside of the home see her at her best and wonder what all the fuss is about.
34. Although some milestones are in her own time, you still celebrate every single one of them as at least it means progress is being made.
35. You own a significant number of sensory toys.
36. Your child probably has the biggest collection of My Little Ponies in town.
37. You know things are coming right when toys are lined up in rows.
38. You avoid the word "no", give your child options instead of instructions and have become a very good negotiator.
39. You can act out some of the episodes of Spongebob as you've seen each episode several times.
40. You always have your child's favourite food in the fridge/freezer.
41. You are amazed at the insights your child has at times, that seem way beyond her years.
42. You can spot another child with autism from a mile.
43. You have identified at least one other member in your extended family who may also have autism.
44. You can describe where your child is at to your partner with just one word. eg: "borderline".
45. If your child's routine is broken, you know you will pay for it later.
46. Trips away have to be very carefully planned and aren't always easy.
47. You have met some extraordinary people because of your child's autism.
48. You couldn't do this on your own and have formed some incredible bonds with some amazing teachers and specialists along the way.
49. When you hear about any struggles your child has endured at school, you want to make it go away but know that you can't.
50. You feel blessed to have a child with autism as it has made you a better person in so many ways.
.
Monday, August 27, 2012
Four years post-diagnosis
Four years ago, in August 2008, our daughter Amy was given a diagnosis that would change our lives. She was three years old and had just started Kindergarten.
Although I was in the know and saw the autism traits loud and clear before our visit with the paedaetrician; it certainly made all the difference once an actual diagnosis was given.
Amy's diagnosis of ASD (autism spectrum disorder) opened up a whole new world that I wasn't completely prepared for. Despite my BA (Hons) in Psychology and Education and a decent number of years working with special needs children (including ones with autism); I naturally had no grasp of what it actually meant to live with a child with autism in the long-term. In many ways the last four years have been a whirlwind.
In the beginning I was exposed to a brand new world of autism - one with specialists, autism-lingo and a way of living that was considerably different to families of "neurotypicals." As the years have gone by, teachers and specialists have come and gone. With every new teacher and specialist, our story is revisited and retold. I continue to learn as much as I can about autism by attending talks by experts in the field. I've seen Celeste Littek (four times), Tony Attwood, Sue Larkey and most recently, Tim Powell. I attend these talks and workshops mainly as an opportunity to meet up with others who live with autism. It is the same reason why I've been attending coffee support groups with Autism New Zealand locally for the last four years - so I don't feel isolated.
It is easy for parents of neurotypicals to claim they have the same or similar issues - which they probably do. But not to the same extent. It is only other parents of other children with autism who understand the true magnitude of what it is like living with - and managing a child on the autistic spectrum. The truimphs are just as important to be shared as are the battles or current issues that have us either wanting to tear our hair out or feeling perplexed - or both!
I've never had any issues with changing our lives or developing routines to accommodate Amy's autism. Amy has always been Amy - so our lives have become simply that - our lives.
The frustrations and difficulties have come with mainstream education and specialists. It would seem you quite simply win some, and lose some! There have been teachers and specialists on board that have "got it" and have been amazing supports to both myself and Amy. Then there have been those that haven't. It is exhausting when as a parent you are put into a position of having to "prove" your child is as autistic as you claim them to be or that you are labelled as the over anxious and over protective parent. I have left in tears after meetings with those who were meant to help. But I've learnt, it is all part of the ride. There are certainly highs and lows along the way.
Interestingly enough, I didn't grieve the diagnosis to begin with. I kind of just went with the flow. Amy had an early intervention teacher on board close to her diagnosis and shortly afterwards, a teacher aide in Kindergarten. I made the mistake, looking back, as describing Amy as "mildly" autistic and "high functioning" (there are examples of this wording even in this blog). She is quite the talker these days (despite being pretty much non-verbal until she was four) and from first glance, appears to be doing okay socially. These first impressions cause many to claim "Her autism isn't that bad!" and to downplay her autism. However her high anxiety and delicate sensory issues need to be carefully managed, each single day. If we don't give Amy the space and "sensory diet" she needs; then the wheels will come off. It's guaranteed. We try to avoid meltdowns with a strong 34kg child.
I, like some specialists on board in the early days, was under the impression that autism could somehow be fixed - that if we got in early, some behaviours could even disappear. It wasn't that I didn't accept Amy for who she was - I just thought, like many, that autism could be perhaps cured.
Four years post-diagnosis and I'm telling you this: autism cannot be cured. It is for life. It can be managed, it can be controlled. It can be preempted, monitored - whatever you want to call it. Bottomline: it is only through understanding and careful consideration of an individual's needs, that autism can seem to (from the outside) be improved. But it is always there.
I would say in many ways the last year or so have been the harder years with Amy. Now she is seven, her differences are more obvious. When she was a preschooler a lot of preschoolers were doing similar behaviours - just not to the extreme like Amy would. But we would shuffle her along - remove her from situations - and all would (mainly!) be forgotten.
It's a little harder to hide autistic traits with a seven year old. Her black and white thinking either confuses other children or goes over their heads. Her high anxiety and sensory needs are hard for both children and adults to understand. It is only after spending longer periods of time with Amy, that the penny drops. Sometimes.
We've always been open around Amy's autism. Her self-awareness is great to see though of course she is still understanding her autism and what that means. Earlier this year Amy chose to do volleyball after school for a term. The children introduced themselves and Amy started with "I'm Amy and I have autism." There was a good few seconds silence as the parent running the after school sporting event contained herself. Then a couple of other peers piped up from Amy's class and talked about how Amy didn't like loud noises and how they tried to be good friends.
The older Amy gets, the more different our home life appears from those with neurotypical families. Amelia is rarely fulltime at school and is exhausted after school. There are no after-school playdates. There aren't many playdates in the weekends either as usually Amy needs this time to refuel after her week at school. However over the last six months, we've been able to have friends over some weekends. But that wasn't the case for her first two years at school.
And friends. What a heartbreaking topic that is. Oh Amy has them. Two mainstayers that come with two very supportive and understanding families. The mothers are also very good friends of mine. Friendships are emerging from within the classroom. But it is such a delicate dance. Sometimes playdates initiated our end aren't reciprocated. Some kids just aren't a good fit for Amy.
We live a pretty quiet life. Routine is paramount to sanity! Occasionally we may stray from the status-quo just to spice things up. But there are always repercussions for doing so. It is hard for visitors to understand why our lives are as rigid as they are. Travel isn't easy. But each year, as Amy grows, we push the boat out a little further. She has a thirst for exploring the big wide world. There are some adventures on the horizon. They may not seem a big deal to the average family; but they are opportunities for us to grow as a family and to break free from our routine from time to time.
Although I was in the know and saw the autism traits loud and clear before our visit with the paedaetrician; it certainly made all the difference once an actual diagnosis was given.
Amy's diagnosis of ASD (autism spectrum disorder) opened up a whole new world that I wasn't completely prepared for. Despite my BA (Hons) in Psychology and Education and a decent number of years working with special needs children (including ones with autism); I naturally had no grasp of what it actually meant to live with a child with autism in the long-term. In many ways the last four years have been a whirlwind.
In the beginning I was exposed to a brand new world of autism - one with specialists, autism-lingo and a way of living that was considerably different to families of "neurotypicals." As the years have gone by, teachers and specialists have come and gone. With every new teacher and specialist, our story is revisited and retold. I continue to learn as much as I can about autism by attending talks by experts in the field. I've seen Celeste Littek (four times), Tony Attwood, Sue Larkey and most recently, Tim Powell. I attend these talks and workshops mainly as an opportunity to meet up with others who live with autism. It is the same reason why I've been attending coffee support groups with Autism New Zealand locally for the last four years - so I don't feel isolated.
It is easy for parents of neurotypicals to claim they have the same or similar issues - which they probably do. But not to the same extent. It is only other parents of other children with autism who understand the true magnitude of what it is like living with - and managing a child on the autistic spectrum. The truimphs are just as important to be shared as are the battles or current issues that have us either wanting to tear our hair out or feeling perplexed - or both!
I've never had any issues with changing our lives or developing routines to accommodate Amy's autism. Amy has always been Amy - so our lives have become simply that - our lives.
The frustrations and difficulties have come with mainstream education and specialists. It would seem you quite simply win some, and lose some! There have been teachers and specialists on board that have "got it" and have been amazing supports to both myself and Amy. Then there have been those that haven't. It is exhausting when as a parent you are put into a position of having to "prove" your child is as autistic as you claim them to be or that you are labelled as the over anxious and over protective parent. I have left in tears after meetings with those who were meant to help. But I've learnt, it is all part of the ride. There are certainly highs and lows along the way.
Interestingly enough, I didn't grieve the diagnosis to begin with. I kind of just went with the flow. Amy had an early intervention teacher on board close to her diagnosis and shortly afterwards, a teacher aide in Kindergarten. I made the mistake, looking back, as describing Amy as "mildly" autistic and "high functioning" (there are examples of this wording even in this blog). She is quite the talker these days (despite being pretty much non-verbal until she was four) and from first glance, appears to be doing okay socially. These first impressions cause many to claim "Her autism isn't that bad!" and to downplay her autism. However her high anxiety and delicate sensory issues need to be carefully managed, each single day. If we don't give Amy the space and "sensory diet" she needs; then the wheels will come off. It's guaranteed. We try to avoid meltdowns with a strong 34kg child.
I, like some specialists on board in the early days, was under the impression that autism could somehow be fixed - that if we got in early, some behaviours could even disappear. It wasn't that I didn't accept Amy for who she was - I just thought, like many, that autism could be perhaps cured.
Four years post-diagnosis and I'm telling you this: autism cannot be cured. It is for life. It can be managed, it can be controlled. It can be preempted, monitored - whatever you want to call it. Bottomline: it is only through understanding and careful consideration of an individual's needs, that autism can seem to (from the outside) be improved. But it is always there.
I would say in many ways the last year or so have been the harder years with Amy. Now she is seven, her differences are more obvious. When she was a preschooler a lot of preschoolers were doing similar behaviours - just not to the extreme like Amy would. But we would shuffle her along - remove her from situations - and all would (mainly!) be forgotten.
It's a little harder to hide autistic traits with a seven year old. Her black and white thinking either confuses other children or goes over their heads. Her high anxiety and sensory needs are hard for both children and adults to understand. It is only after spending longer periods of time with Amy, that the penny drops. Sometimes.
We've always been open around Amy's autism. Her self-awareness is great to see though of course she is still understanding her autism and what that means. Earlier this year Amy chose to do volleyball after school for a term. The children introduced themselves and Amy started with "I'm Amy and I have autism." There was a good few seconds silence as the parent running the after school sporting event contained herself. Then a couple of other peers piped up from Amy's class and talked about how Amy didn't like loud noises and how they tried to be good friends.
The older Amy gets, the more different our home life appears from those with neurotypical families. Amelia is rarely fulltime at school and is exhausted after school. There are no after-school playdates. There aren't many playdates in the weekends either as usually Amy needs this time to refuel after her week at school. However over the last six months, we've been able to have friends over some weekends. But that wasn't the case for her first two years at school.
And friends. What a heartbreaking topic that is. Oh Amy has them. Two mainstayers that come with two very supportive and understanding families. The mothers are also very good friends of mine. Friendships are emerging from within the classroom. But it is such a delicate dance. Sometimes playdates initiated our end aren't reciprocated. Some kids just aren't a good fit for Amy.
We live a pretty quiet life. Routine is paramount to sanity! Occasionally we may stray from the status-quo just to spice things up. But there are always repercussions for doing so. It is hard for visitors to understand why our lives are as rigid as they are. Travel isn't easy. But each year, as Amy grows, we push the boat out a little further. She has a thirst for exploring the big wide world. There are some adventures on the horizon. They may not seem a big deal to the average family; but they are opportunities for us to grow as a family and to break free from our routine from time to time.
Friday, September 9, 2011
I Don't Always Have The Answers
It's been a rough week on the autism front. Or perhaps it hasn't been. Perhaps it is just me having a week in which I feel overwhelmed.
When Amy was diagnosed three years ago with ASD (autism spectrum disorder) words such as "high-functioning" were tossed around. It was implied that her autism was mild - not as bad as some. Which is true - it isn't. It was also hinted that she may even one day get to the stage in which her autism diminished or even disappeared. Really?
The heartbreaking reality of having a child with ASD that can hit hard at times is - it's for life. Some aspects of autism become more manageable over time. But other aspects don't seem to change and this really hit me this week.
It was Thursday morning and I was just dropping Amy off to school and on my way to work. The RTLB was there and said we needed to chat - now. It was a twenty minute conversation about some issues the school is experiencing at the moment. I felt as though I was meant to come up with a solution and for years I have done that - all throughout Amy's Kindy years and for almost two years at school. I have been there supporting, suggesting, and contributing with all the specialists that have been on board over the last three years.
But I'm exhausted and running out of ideas. I went to work after that meeting on Thursday and shed tears about Amy and autism being for life. This week it has felt like a life sentence for all of us.
I was under the impression that with early intervention, the school years would be easier. Yet even though we were lucky to have help from the time Amy was three and a half and she has progressed in leaps and bounds in some areas; so many challenges remain. I cannot say that life with a daughter who is six and a half with autism is any easier than what it was when she was three and a half.
Dare I admit that on that Thursday morning that when the tears fell, I just for a couple of minutes wondered what it would be like if Amy didn't have autism. I know parenting is not an easy ride for anyone. But the daily challenges Amy faces are hard on all of us.
There are the beautiful and proud moments. Like when Amy completed her jazz medal test on Tuesday this week. Independent at times, she requested that I not be in the room during her test (even though all the other parents were!). She did well and held it together. But got home and had a huge meltdown.
I have just written a long email to the RTLB with some further suggestions for the school stuff. It's all stuff that I feel they should know by now - repeated information. Earlier this week I rewrote a social story Amy's occupational therapist had written as it had words like"don't" in it which don't work well for a child with autism. These specialists are on board to help and sometimes I wish they could just sweep in and solve things for us. But sometimes even they are stumped and on occasion get it wrong - specialists with years of experience with children with autism.
Mothers Guilt is something I believe that comes with babies are soon as they are born. Mothers Guilt with a child with autism is there all the time for me. When I don't have the answers, I feel as though I have failed Amy. I'm meant to protect and guide her. But sometimes all I can do is manage autism on a day to day basis and hope for the best. I'm never sure what tomorrow will bring.
Sunday, August 14, 2011
Borderline Days
My husband and I have an expression for when Amy's behaviour is off-balance, she is on the edge of a meltdown and things feel as though they could blow - it's called "borderline."
Borderline Days are hard days. It's autism in full swing. It's about sensory overload, anxiety and restlessness. It's about our daughter not being comfortable in her our own skin and constantly wiggling and finding ways to ease her discomfort yet invariably nothing works. It's simply something that has to be ridden out.
We've learnt over the years that these days pass. Sometimes we have Borderline Weeks - and even Borderline Months. It's as though Amy's autism resets itself and we have to have two steps backwards in order to have another step forward.
Although many aspects of autism are triggered or at least amplified externally eg: such as in a noisy classroom, I strongly believe that a lot of autistic behaviour (at least with our daughter - as autism is different in every child), comes from within. Amy went on a playdate today in a borderline state and it didn't go so well. The outcome wasn't a surprise despite her being left with a family that understands the many faces of her autism. Most of the time Amy spends time with this family, there aren't issues. But on a Borderline Day it is a given that social interactions are difficult for Amy - even with those she knows really well. Typically I try to discourage playdates on borderline days. But sometimes Amy just wants to go!
It is almost as though when these Borderline Days hit, Amy changes somehow in a biological way. I can tell just by looking at her when she is in a borderline state - the colour is gone from her cheeks and it's almost as if she appears to be sick. In fact a headache will often be part of the package.
Borderline Days typically hit towards the end of the week. Luckily I have a job in which I usually work Monday - Wednesday so I'm available if Amy needs an afternoon or a day off school. Often I can preempt her behaviour and will not send her to school if she's obviously struggling.
However I did send her to school last Thursday - the first day back after the school holidays - knowing full well that Amy was in a borderline state. Her classroom teacher knows he can call me anytime and I will pick her up - and I do get the call from time to time to come and get her. But I didn't get a call and turned up at the end of the day to find out she'd had her first ever meltdown at school.
I partly felt bad about this - because as a parent - and especially as a parent of a child with autism - it is my job to look out for her. Yet at the same time I thought - as did her teacher - that it was good to see a meltdown in action at school as until now, her teacher (and other staff at her school) have only heard my version of a meltdown. I think the experience only reinforced to the teacher how crucial sensory diets and all the other things we put in place to manage Amy's autism at school are.
Amy has been at school for a year and a half and it has taken the school a while to get to know her as her version of autism (particularly the girl variety) is quite different to the autism they have seen in other students. I very much felt like the overprotective and anxious mother for quite some time as I fought to have several things put in place for Amy so school would not only be possible for her - but also positive.
Luckily since an RTLB (Resource Teacher: Learning and Behaviour) came on board this year who has a lot of respect and authority in the school; I am no longer fighting solo for Amy. Amy now has a teachers aide Monday - Friday for half an hour a day for one-on-one reading and writing. There is also an afternoon programme for kids who need a break from school. There are five children all up who attend including Amy and four out of the five appear to be autistic. This programme used to be twice a week and is now three times a week and Amy loves it.
Yet despite the one-on-one teaching time and the breaks three afternoons a week, attending school fulltime is still a big stretch for Amy. I always say that autism seems to come in cycles for us and so when we have a series of Borderline Days, we have to pull back and accept that in these times not a lot of homework will be done and some school will probably be missed. It is not worth it for anyone involved to push too much.
For Amy it's as though she comes with a certain amount of energy - kind of like those with chronic fatigue and sometimes she has even less to give out to the world than other times.
Borderline Days are exhausting for all of us. We've just had a Borderline Weekend and we are all shattered. But we've been through enough cycles to know these borderline episodes do pass and an energised, focused and chatty child will come out of the autism fog eventually.
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