No doubt every parent of a child with a diagnosis struggles at some point with the "label" their child is given. I have. We have as parents. And our extended family have also - and still do - struggle to get their heads around the ASD diagnosis because for a lot of the time to the outside world Amy appears to be "normal."
As a parent I have had to recognise and accept that raising a child with ASD is not easy work. Parenting itself is full of challenges and I am not undermining that. But parenting a child with ASD comes with a whole lot of other challenges. Parents of typical children often comment that they wish there was a manual for parenting. There might not be, but there are lots of resources out there to inform, educate and advise parents of typical children.
I certainly wish there was a manual for parenting the ASD child! Autism New Zealand is the gateway to a wealth of information and resources on parenting the ASD child. I haven't tapped into much of it at this point. Mainly because I am on my own journey as a Mum in accepting that my beautiful blonde-headed and blue-eyed four year old has special needs. Special needs that no matter how much time and energy we put in will be there for life.
Obviously there are worse conditions out there than ASD. But being on the higher end of the autism spectrum comes with a whole heap of issues that we are still unravelling as parents. Now that Amy is four years old I can look back at the last four years and appreciate how much time and energy has gone into parenting her. Her "special needs" have exhausted, frustrated and stumped us many a time. Yet we have carried on, determined to give Amy the best start in life as possible in these precious preschooler years.
We have done well as parents. I hear that a lot. But I think part of parenting a special needs child is getting to a point of acceptance that outside help is both needed and necessary. We have specialist input. There are neighbours and friends who are able to watch Amy if I need to go for an appointment. We have respite care in place but it is irregular in nature and not quite filling the gap I think we need to help us care for Amy.
Time as a couple has slipped down the list as parents of an ASD child. It is not Amy's fault. I am not implying that. I am just pointing that she has been our main focus, and by the time we've factored things like work, gym-work-outs and committee meetings etc into our week, there seems to be little time for us. Try as we might to be more creative around how we spend our evenings together, it is hard to do much more than blob on the couch together.
I have clicked recently that this is our life. That life with an ASD child will continue to be filled with challenges - often daily ones and so as a couple we need to find a way to make time for us, otherwise we are in danger of there not being an "us".
Thanks to the recession, I am in the process of looking for more work. This has meant looking into appropriate care for Amy - probably in the form of a nanny. It wouldn't be more than twenty hours a week and I'm not sure we can cover it yet I am still investigating funding. Believe me this has not been an easy decision. I have prided myself in being an at-home Mum for four years, never working more than ten hours a week, and working it out so that my husband was always able to look after Amy.
I think perhaps it is best for all of us if we do get a nanny. We have some great extended family support from a distance but not the physical hands-on support some families may have with special needs children. So I suppose employing a nanny could be a way of bringing in another member of the family to help us care for Amy while we go out and earn the bacon as such.
I was the nanny of a child with Aspergers Sydrome myself many years ago so today can appreciate why I was employed. It wasn't just so there could be two working parents. It was so the parents could have a break. These are children with social difficulties so I think it is a positive thing giving them the opportunity to bond with another adult. I couldn't have considered this before this point but it all seems quite timely. Amy will be at morning Kindy soon and at school in a year, so perhaps some time bonding with another adult will help prepare her for long school days in which Mum won't be around and she will have to turn to others for support.
Reaching a place of acceptance and understanding that I am the Mum of a special needs child has been quite big for me. I don't mean to use that label as an excuse for her - or me as a parent either! I'm not implying that Amy is limited in her capabilities either. It's not about that. It's simply that she does have special needs that are beyond that of the typical child - needs that are a challenge to meet and read. As any mother of an atypical child will attest - Amy is indeed so very special in her own right and in many ways. That is the flipside - she may have a diagnosis to live with, but she is Amy to us and to all that love and know her.
Friday, March 27, 2009
Thursday, March 19, 2009
Tears for Amy
Ever since I attended the local autism courses (the week before last), it's like the emotional flood-gates have opened. I am processing so much around accepting Amy's fate while at the same time parenting Amy and dealing with all that her diagnosis means.
I have been afraid for Amy's future. Talks of bullying on the courses didn't help. Apparently those on The Spectrum /with Aspergers are at risk of being picked on, made fun of, and being the butt of silly pranks. Buddy systems and safe places were offered as ways to counteract this. But still.
Amy has just been through a rough phase at Kindy. It was very timely that her IP (Individual Plan) meeting was last week so I could sit down with three Kindy teachers, an early intervention teacher and someone from CDS (Child Development Services) and nut things out. Some changes have been made at Kindy and things seem to be improving. Even so that session was hard to attend. I was grateful for it and it was necessary. But it was all about Amy's negative behaviours so a teachers aide can be applied for when she moves to morning Kindy (next term). It was hard as a Mum to sit there for an hour and a half with five education professionals focusing on all the problems Amy has at Kindy.
For a few weeks at Kindy Amy's behaviour was just getting worse. She was chasing, pushing, and kicking other children a lot of the time. The end of the session was when Amy typically lost it. The teachers start packing up, while the kids get more hyped up and the general vibe is downright chaos. This lack of order sends Amy into a spin. So the easiest thing to do has been for me to simply pick her up a little earlier, before tidy-up time, and take her home.
A quiet corner is set up for her at the beginning of every session which she is encouraged to go to if she's demonstrating that she needs her space. Amy has responded positively to this and has gone there willingly when asked.
The Kindy teachers have also started tracking her amongst themselves, ensuring that Amy is involved in an activity at all times. She needs the adult guidance and company a lot of the time to stay on task and if this need isn't met, she will take her insecurities out on the other children.
All involved are confident that the move to morning Kindy will be positive for her. It is pretty obvious she is bored socialising with three year olds at the moment and craves the social direction and confidence four plus year olds will be able to provide.
Tomorrow Amy turns four years old. She had her fourth birthday party last weekend which went really well. She had a Wiggles-themed party with eight children in attendance (ten if you include Amy and a nine month old baby) and around fourteen adults. Admittedly I was a little anxious as to how things would go given Amy has been in pushing-mode lately when in groups of children. But she was fine. Absolutely fine. I have to pat myself on the back though for organising a party that would met her needs for order and also didn't hype any of the children up too much!
It was two hours long - starting at 10am and ending at noon. I hired a community hall that wasn't too massive - a perfect size for a group of twenty. On arrival there was an activities table set up with Wiggles pictures to colour in, and another table with face-painting so the children were all clear they were either colouring or waiting to have their faces painted.
Once a few children had their faces painted they made their way over to the party table which was set up all ready to go with a heap of Wiggles stuff. Around 11am the cake came out, we all sung Happy Birthday to Amy and then the music was turned up loud for ten/fifteen minutes of Wiggle dancing. After this the children were directed to the activity table where they made featherswords out of a cardboard cut-out of a feathersword, glue and some feathers. We finished the party with some stories in an allocated story-corner (that had books there the whole time in case any of the children needed some quiet time).
I think being the parent of a child with ASD has some advantages. I am good at preempting the behaviour of most children as I can read where they're at through their body language. Yes I'm patting myself on the back again because a lot of the time as a Mum of a daughter on The Spectrum I feel incredibly challenged. Gut instincts have helped a lot but there is still a lot of guessing and experimenting that takes place and things can go horribly wrong.
There is also a lot of spoken and unspoken pressure from the specialists involved once your child is diagnosed with ASD. Some of the advice and suggestions I have agreed with - but some of it I haven't. Amy got referred to a district nurse via CDS because she is still in nappies at lo and behold - four! The actual appointment with the district nurse was awful. It was an hour of being told how to toilet-train my daughter with no consideration or interest as to what we've tried - and why it hasn't worked.
Amy has suffered from constipation for a couple of years at least and the severity of it varies. This hasn't helped with toilet-training. I've always thought her high anxiety levels haven't helped things much in this department. This feeling was confirmed when it was mentioned at the autism course that toileting issues are common for those with ASD.
Amy's back on medication to help her at this point, and I am monitoring her food and drink intake, making sure she gets enough exercise (she needs a fair bit) - basically doing everything I can. Yet I will not take my daughter out of nappies while she struggles to get a bowel movement. I think that is incredibly cruel - but it is what was suggested by the district nurse. An example of a professional who doesn't understand the complexities of ASD. It took us around a year to get her to wee on the toilet and she still needs a lot of prompting. So no doubt pooing on the loo is a little way off.
I do want to get Amy out of nappies asp. I don't want her to be ridiculed or to feel like she's the odd one out socially. She's typically nappy free during the day though. We have a year to get her sorted before school which is my personal time-line for getting a few things on track.
Amy had her last bottle of milk the other day. Once again, a few days off four might seem late to wean your child off a bottle but I prefer the gentle approach with a child who has enough struggles. Maybe I'm a soft touch but I generally check in with Amy before whisking anything that makes her feel secure away. I bought her a new cup for her night-time milk and she is adapting okay. She's missing the bottle but getting there.
I feel a lot of frustration, angst and worry around Amy's ASD and our support crew (of specialists). Many of the support crew are still getting to know her and I've had to allow them to in their own way and time which has sometimes been hard - watching them misreading her or missing big cues that she needs some help.
Because of financial reasons, I am looking at increasing my working hours (currently just working Sundays) which causes me a lot of emotional confusion. I really don't want someone else looking after my Amy as the truth is - no-one knows her quite like I do (except for her Dad of course). But I'll cross that bridge when I come to it.
For now I'm grateful Amy had a good day at Kindy today, a fantastic fourth birthday party and that she's moving forward. I may have tears for Amy but I also have a lot of pride.
I have been afraid for Amy's future. Talks of bullying on the courses didn't help. Apparently those on The Spectrum /with Aspergers are at risk of being picked on, made fun of, and being the butt of silly pranks. Buddy systems and safe places were offered as ways to counteract this. But still.
Amy has just been through a rough phase at Kindy. It was very timely that her IP (Individual Plan) meeting was last week so I could sit down with three Kindy teachers, an early intervention teacher and someone from CDS (Child Development Services) and nut things out. Some changes have been made at Kindy and things seem to be improving. Even so that session was hard to attend. I was grateful for it and it was necessary. But it was all about Amy's negative behaviours so a teachers aide can be applied for when she moves to morning Kindy (next term). It was hard as a Mum to sit there for an hour and a half with five education professionals focusing on all the problems Amy has at Kindy.
For a few weeks at Kindy Amy's behaviour was just getting worse. She was chasing, pushing, and kicking other children a lot of the time. The end of the session was when Amy typically lost it. The teachers start packing up, while the kids get more hyped up and the general vibe is downright chaos. This lack of order sends Amy into a spin. So the easiest thing to do has been for me to simply pick her up a little earlier, before tidy-up time, and take her home.
A quiet corner is set up for her at the beginning of every session which she is encouraged to go to if she's demonstrating that she needs her space. Amy has responded positively to this and has gone there willingly when asked.
The Kindy teachers have also started tracking her amongst themselves, ensuring that Amy is involved in an activity at all times. She needs the adult guidance and company a lot of the time to stay on task and if this need isn't met, she will take her insecurities out on the other children.
All involved are confident that the move to morning Kindy will be positive for her. It is pretty obvious she is bored socialising with three year olds at the moment and craves the social direction and confidence four plus year olds will be able to provide.
Tomorrow Amy turns four years old. She had her fourth birthday party last weekend which went really well. She had a Wiggles-themed party with eight children in attendance (ten if you include Amy and a nine month old baby) and around fourteen adults. Admittedly I was a little anxious as to how things would go given Amy has been in pushing-mode lately when in groups of children. But she was fine. Absolutely fine. I have to pat myself on the back though for organising a party that would met her needs for order and also didn't hype any of the children up too much!
It was two hours long - starting at 10am and ending at noon. I hired a community hall that wasn't too massive - a perfect size for a group of twenty. On arrival there was an activities table set up with Wiggles pictures to colour in, and another table with face-painting so the children were all clear they were either colouring or waiting to have their faces painted.
Once a few children had their faces painted they made their way over to the party table which was set up all ready to go with a heap of Wiggles stuff. Around 11am the cake came out, we all sung Happy Birthday to Amy and then the music was turned up loud for ten/fifteen minutes of Wiggle dancing. After this the children were directed to the activity table where they made featherswords out of a cardboard cut-out of a feathersword, glue and some feathers. We finished the party with some stories in an allocated story-corner (that had books there the whole time in case any of the children needed some quiet time).
I think being the parent of a child with ASD has some advantages. I am good at preempting the behaviour of most children as I can read where they're at through their body language. Yes I'm patting myself on the back again because a lot of the time as a Mum of a daughter on The Spectrum I feel incredibly challenged. Gut instincts have helped a lot but there is still a lot of guessing and experimenting that takes place and things can go horribly wrong.
There is also a lot of spoken and unspoken pressure from the specialists involved once your child is diagnosed with ASD. Some of the advice and suggestions I have agreed with - but some of it I haven't. Amy got referred to a district nurse via CDS because she is still in nappies at lo and behold - four! The actual appointment with the district nurse was awful. It was an hour of being told how to toilet-train my daughter with no consideration or interest as to what we've tried - and why it hasn't worked.
Amy has suffered from constipation for a couple of years at least and the severity of it varies. This hasn't helped with toilet-training. I've always thought her high anxiety levels haven't helped things much in this department. This feeling was confirmed when it was mentioned at the autism course that toileting issues are common for those with ASD.
Amy's back on medication to help her at this point, and I am monitoring her food and drink intake, making sure she gets enough exercise (she needs a fair bit) - basically doing everything I can. Yet I will not take my daughter out of nappies while she struggles to get a bowel movement. I think that is incredibly cruel - but it is what was suggested by the district nurse. An example of a professional who doesn't understand the complexities of ASD. It took us around a year to get her to wee on the toilet and she still needs a lot of prompting. So no doubt pooing on the loo is a little way off.
I do want to get Amy out of nappies asp. I don't want her to be ridiculed or to feel like she's the odd one out socially. She's typically nappy free during the day though. We have a year to get her sorted before school which is my personal time-line for getting a few things on track.
Amy had her last bottle of milk the other day. Once again, a few days off four might seem late to wean your child off a bottle but I prefer the gentle approach with a child who has enough struggles. Maybe I'm a soft touch but I generally check in with Amy before whisking anything that makes her feel secure away. I bought her a new cup for her night-time milk and she is adapting okay. She's missing the bottle but getting there.
I feel a lot of frustration, angst and worry around Amy's ASD and our support crew (of specialists). Many of the support crew are still getting to know her and I've had to allow them to in their own way and time which has sometimes been hard - watching them misreading her or missing big cues that she needs some help.
Because of financial reasons, I am looking at increasing my working hours (currently just working Sundays) which causes me a lot of emotional confusion. I really don't want someone else looking after my Amy as the truth is - no-one knows her quite like I do (except for her Dad of course). But I'll cross that bridge when I come to it.
For now I'm grateful Amy had a good day at Kindy today, a fantastic fourth birthday party and that she's moving forward. I may have tears for Amy but I also have a lot of pride.
Sunday, March 8, 2009
Give them the space they need!
I drove past a billboard today that read Don't burst their bubble, give them some space. It was directed towards drivers of course. Yet it is certainly applicable to those on "The Spectrum".
The whole thing with my daughter is about getting the right space at any given time. Amy can handle being close to other children and seems to enjoy the chaos of several children playing in a small space together. How long this will last is anybody's guess. The first push is a sign that she has exposure anxiety and wants to get out of there. Yet instead of just removing herself, she will carry on actually physically pushing children out of her massive air bubble until someone - usually me - removes her. Except for last week when she told her friend Tina on a playdate that it was time to go home! We've been telling her to use her words: at least she was honest! Tina stayed for another forty-five minutes. Amy asked her to leave another time and when she didn't she started pushing Tina. I was impressed that Amy was able to tune into herself and recognised she was sensory overloaded - she did warn Tina several times before the pushing started.
My husband and I both did Celeste Littek's course Introduction to Advanced Strategies: Implications for Learning last Thursday. It was very good and covered everything you need to know about autism. Basically it saved reading fifty or so books or researching for hours on the Net. Celeste is a great speaker. She has over 20 years of personal and professional experience in ASD and knows her stuff. She currently works with the wider community in developing training courses for those who care for children with ASD. There were 84 on our course and only a handful of parents - most were educators/teachers. The parents were nodding their heads in recognition of some of the autistic traits and the educators gained an invaluable insight into the world of autism. Amy's Head Kindy teacher sat next to us which was great. It was interesting for her to learn a little more about Amy pre-Kindy.
In a way the course was like a summary of our journey thus far with Amy. It was emotional. I am still processing some feelings that were stirred up as a consequence of the course. Some say they go through a grieving period when their child is diagnosed with ASD. However I didn't. I just got on with it, and did what I had to to help Amy. I had a lump in my throat a lot of the time when dealing with specialists for the first few months, but I just carried on. Now I feel like I am a bit of an emotional mess as I acknowledge what we've been through as a family while carrying on with the ASD challenges that are part of our lives.
On Friday I also did the Introduction to Advanced Strategies for Autism Spectrum Disorders. This was also taken by Celeste and was great too. But admittedly I was still reeling from the course the day before so found two days of autism courses quite emotionally taxing. The second course basically named a lot of Amy's ASD traits - and helped me understand them more. Both courses confirmed that Amy's diagnosis is correct and that we are on the right track towards helping her. A woman I met on a business course a couple of years ago sat next to me. Her son had been very recently diagnosed although he is a bit older than Amy. She had the tissues out and I told her not to worry, that I had shed a few tears myself the day before. It certainly isn't an easy course for parents to do.
I do agree with Celeste's message which is not to change the child with autism - but to help them. Apparently this is what the autism sector has said. They know they are "different" - but they don't want to be one of us!
It takes a lot of energy for the child with ASD to act the "appropriate" way socially. Celeste said to think of socialising as a second language for these children - it's not easy for them to use, doesn't come naturally and when they are stressed - it is going to be very hard to understand what they are saying - in their own language. No wonder the poor things get frustrated.
Amy has a lot of people in her face right now egging her along so she can fit comfortably in her social world. Yet I know she feels the pressure. It hit me how pressured she was feeling when after an anxiety-filled morning at home with us, her parents, one morning - she completely relaxed with our neighbours (our respite carers) when my husband and I went out for coffee. I realised there are no major expectations put on her there and that she can just cruise around and hang out with the three children aged seven to eleven years old.
Home should be a sanctuary and I've been trying to recreate that for Amy.I have been playing a lot with Amy - nothing new there, I've always played with her. But I've been role-playing and speaking through her toys. It is exhausting for both of us at times. So I'm endeavouring to allow time in our week when the two of us can just "be". I feel I have a certain amount of pressure on myself to keep Amy's progress moving along. When one of the specialists came into our home the other day and forced Amy to look her in the eye while physically moving her head I had enough of it all.
Amy has several social stories now. They are effective yet I'm aware they could be over-used. At the beach the other day, she was paddling in the water in her clothes. I told her not to go out into the water any further and she said "Yes Mummy" followed by "Write a story about that? The beach?" Obviously she has picked up that the social stories are basically about correcting unwanted behaviour! She is on to it more than we realise a lot of the time.
I'm looking forward to a meeting on Wednesday with the Head Teacher at Kindy, the early intervention teacher, CDS (child development services) and myself to make some goals for Amy for her next year before starting school. I will be calling the shots. After doing Celeste's course I feel it's important that Amy isn't pushed too much. Celeste did share how her nephew had post-traumatic syndrome as a result of some negative interventions and I could see how that would happen. I don't want Amy to feel like she's not good enough or that she needs to change. All I want to give her is some direction socially so she can fit in as naturally as possible with her peers.
The whole thing with my daughter is about getting the right space at any given time. Amy can handle being close to other children and seems to enjoy the chaos of several children playing in a small space together. How long this will last is anybody's guess. The first push is a sign that she has exposure anxiety and wants to get out of there. Yet instead of just removing herself, she will carry on actually physically pushing children out of her massive air bubble until someone - usually me - removes her. Except for last week when she told her friend Tina on a playdate that it was time to go home! We've been telling her to use her words: at least she was honest! Tina stayed for another forty-five minutes. Amy asked her to leave another time and when she didn't she started pushing Tina. I was impressed that Amy was able to tune into herself and recognised she was sensory overloaded - she did warn Tina several times before the pushing started.
My husband and I both did Celeste Littek's course Introduction to Advanced Strategies: Implications for Learning last Thursday. It was very good and covered everything you need to know about autism. Basically it saved reading fifty or so books or researching for hours on the Net. Celeste is a great speaker. She has over 20 years of personal and professional experience in ASD and knows her stuff. She currently works with the wider community in developing training courses for those who care for children with ASD. There were 84 on our course and only a handful of parents - most were educators/teachers. The parents were nodding their heads in recognition of some of the autistic traits and the educators gained an invaluable insight into the world of autism. Amy's Head Kindy teacher sat next to us which was great. It was interesting for her to learn a little more about Amy pre-Kindy.
In a way the course was like a summary of our journey thus far with Amy. It was emotional. I am still processing some feelings that were stirred up as a consequence of the course. Some say they go through a grieving period when their child is diagnosed with ASD. However I didn't. I just got on with it, and did what I had to to help Amy. I had a lump in my throat a lot of the time when dealing with specialists for the first few months, but I just carried on. Now I feel like I am a bit of an emotional mess as I acknowledge what we've been through as a family while carrying on with the ASD challenges that are part of our lives.
On Friday I also did the Introduction to Advanced Strategies for Autism Spectrum Disorders. This was also taken by Celeste and was great too. But admittedly I was still reeling from the course the day before so found two days of autism courses quite emotionally taxing. The second course basically named a lot of Amy's ASD traits - and helped me understand them more. Both courses confirmed that Amy's diagnosis is correct and that we are on the right track towards helping her. A woman I met on a business course a couple of years ago sat next to me. Her son had been very recently diagnosed although he is a bit older than Amy. She had the tissues out and I told her not to worry, that I had shed a few tears myself the day before. It certainly isn't an easy course for parents to do.
I do agree with Celeste's message which is not to change the child with autism - but to help them. Apparently this is what the autism sector has said. They know they are "different" - but they don't want to be one of us!
It takes a lot of energy for the child with ASD to act the "appropriate" way socially. Celeste said to think of socialising as a second language for these children - it's not easy for them to use, doesn't come naturally and when they are stressed - it is going to be very hard to understand what they are saying - in their own language. No wonder the poor things get frustrated.
Amy has a lot of people in her face right now egging her along so she can fit comfortably in her social world. Yet I know she feels the pressure. It hit me how pressured she was feeling when after an anxiety-filled morning at home with us, her parents, one morning - she completely relaxed with our neighbours (our respite carers) when my husband and I went out for coffee. I realised there are no major expectations put on her there and that she can just cruise around and hang out with the three children aged seven to eleven years old.
Home should be a sanctuary and I've been trying to recreate that for Amy.I have been playing a lot with Amy - nothing new there, I've always played with her. But I've been role-playing and speaking through her toys. It is exhausting for both of us at times. So I'm endeavouring to allow time in our week when the two of us can just "be". I feel I have a certain amount of pressure on myself to keep Amy's progress moving along. When one of the specialists came into our home the other day and forced Amy to look her in the eye while physically moving her head I had enough of it all.
Amy has several social stories now. They are effective yet I'm aware they could be over-used. At the beach the other day, she was paddling in the water in her clothes. I told her not to go out into the water any further and she said "Yes Mummy" followed by "Write a story about that? The beach?" Obviously she has picked up that the social stories are basically about correcting unwanted behaviour! She is on to it more than we realise a lot of the time.
I'm looking forward to a meeting on Wednesday with the Head Teacher at Kindy, the early intervention teacher, CDS (child development services) and myself to make some goals for Amy for her next year before starting school. I will be calling the shots. After doing Celeste's course I feel it's important that Amy isn't pushed too much. Celeste did share how her nephew had post-traumatic syndrome as a result of some negative interventions and I could see how that would happen. I don't want Amy to feel like she's not good enough or that she needs to change. All I want to give her is some direction socially so she can fit in as naturally as possible with her peers.
Subscribe to:
Posts (Atom)