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.
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