Every Mom who cares for a child with special needs in my opinion is a YUMMY RAINBOW MOMMY.
You are all fabulous women and my heart goes out to you.
All my love
Allison xxx
Thursday, July 16, 2009
Wednesday, July 15, 2009
The Cruel Reality of Caring for a Child With Autism
I know that most of the time I say positive things about having autism in my life, because I do truly love my children the way they are, but I feel it is necessary to share with you my struggles because I am human just like anyone else. Those who know me often tell me how wonderful I am because I always keep a smile on my face and work so hard to help others. I always say thank you with a smile and say it's nothing, but there is sooooo another side to the story. I am not going to mix with words here...as a Mom of 3 ASD kids, I have been through hell. Even though I might disguise this well because I put on a good front, deep down I am hurting. I hurt badly. People don't see the tears in my eyes just before I get out of the car with a smile on my face..If I didn't try to find the beauty in each day, how on earth would I keep going? I have been fortunate enough to have had a 14 year career in human resource management, which has equipped me with the skills to do what I am now doing. This makes my life worth something and so I do what I do, not for the recognition, but for my own self-worth.
Caring for any child with a disability is difficult, but a new study suggests that carers of children who had autism had higher levels of parenting stress.
An extract from a New York Times article quoted "The parents in the autism group had higher levels of parenting stress and psychological distress compared to moms of children with disabilities without autism." (Link to the article is provided at the end of this post.)
I recently raised the issue of sleep deprivation with my FaceBook group 'Survival Guide 4 Rainbow Moms & Carers (special needs kids). Not surprisingly, but with much frustration and personal sadness, was the number of Moms who personally wrote to me or posted to the group how they rely on sleeping tablets and other drugs to survive. This was no surprise to me because I have been addicted to sleeping tablets and analgesics (the strong ones!) in a desperate attempt to just get ONE DECENT NIGHT'S SLEEP! I messaged everyone this week about my high levels of anxiety that I attribute to sleep deprivation because I have had enough and thought it might be useful to others as well as myself if I shared my own personal struggles.
With three children on the autism spectrum, our house usually works like this: After putting Jacob and Aaron to sleep, Kristie struggles to get sleep and can be up until 12am. We can't get anything done around the house until she has gone to sleep because we feel stressed about her stressing at not being able to get to sleep. (This usually makes me feel really anxious and I start worrying about the next day!) Then Shane & I go to bed with a 1/2 clean home and make our way to bed around 1:30am. Low and behold, just as we are climbing into bed or not long after, one of our little boys makes an appearance. Whoever it is usually orders me to get them a bottle and go collect their dummy and ruggie from their room. Then 15-20 minutes later pesters me to take them to the toilet. Nappy then needs changing and sometimes even PJ's & bed sheets that are now wet through. Child eventually settles and we reluctantly lay our heads down for some sleep. BUT wouldn't you know it, a short time later the other son wakes up only to repeat the same routine (I guess they are identical twins after all). Sometimes this can be around 3 or 4am….. sometimes it is 6am.
Are you feeling tired just reading this, or are you shaking your head because this resembles your life?? Don't stop reading, there's more.....
Alarm goes off at 7am. Frankly.... who cares about that stupid alarm. I just want sleep! Alarm goes off for an hour when eventually the kids make us get up or we decide to make ourselves get up. Made panic takes over the house because we are going to get Kristie to school late again! School will be unhappy... more lectures about how important it is to get the kids to school on time.... Shane & I fight over whose fault it is we didn't get up early enough. Feeling depressed because of the late start to the day AND the house looks and feels like crap. I feel total despair. Shane comes down with a migraine and we can't stop fighting. More therapy forms needing to be filled in arrive in the mail along with ever increasing therapy bills. No one to call for help, nowhere to go, no in-home help to rectify the probems....simply because no services actually give you the in-home support you need to make things better….. What to do?
There’s still more, but I will stop now because I am starting to depress myself!
This week I had a particularly bad week. There have been a lot of factors here. 1. school holidays 2. change in routine 3. full moon 4. wet and windy weather 5. Constant screaming/demanding children 6. no sleep 7. no escape or a minutes respite away from the house (we do have in-home respite, but mostly too tired to go anywhere or we simply don't have the money to go out). 8. chaos in the home (I hate chaos) 9. messy & disorganized house.
That leads me to # 10. a desperate need to reach for the analgesic tablets in the hope they knock me out so I can't hear anything and sleep right through! I have only taken very few analgesics in recent times and only take them when my right leg sciatic pain gets too much for me. I had made a promise to myself since starting on a biomedical regime that I would no longer abuse my body by taking these types of drugs. I wish I had kept that promise to myself because although I had a good sleep that night, largely because Shane got up to the kids for me (poor thing only got 2 hrs sleep), it made me very sluggish. I couldn't wake myself up the next morning and spent the entire day in zombie mode. Then, I found myself getting more and more irritable, aggressive and angry. No one could do anything right and I ended up having a bad case of depression. I hadn't previously realized that this is the affect over the counter medication was having on me. I reflected on all the struggles I have had because of this feeling inside of me and felt somber when I realized I had done this to myself through self medicating. I have vowed to myself today to NEVER EVER take another one of those terrible and debilitating tablets again. I only hope I can keep my promise.
About 9 months ago I completed an extensive survey being conducted by the Women's and Children's Hospital in Adelaide, South Australia. This study was to look at the effects caring for a child with autism has on a Mom and their mental health. The study isn't completed yet, so it will be interesting to see what the outcomes are because I gave an honest and candid account of my everyday life! I was really excited to see, however, the following article from the New York Times entitled "The Stress of Autism", by Tara Parker-Pope, dated 14 July 2009. (http://well.blogs.nytimes.com/2009/07/14/for-mothers-the-stress-of-autism/) So much more research needs to be done on how caring for an autistic child, two or three, sometimes 4 or 5 even, has on the physical and mental health of us carers. We go through so much and our communities don't even know what it is we do go through, so how can they help? How can we expect empathy from our therapists, educators and neighbors when they get the impression we exaggerate everything? You can always tell when something thinks you are simply dribbling on about how difficult things can be. My personal pet hate is when you are trying to explain an autistic trait your child has and the person responds by saying “All children do that”. It seems that the only people who get it are our fellow ASD parents & carers.
HAPPY RAINBOWS
Allison :-)
Caring for any child with a disability is difficult, but a new study suggests that carers of children who had autism had higher levels of parenting stress.
An extract from a New York Times article quoted "The parents in the autism group had higher levels of parenting stress and psychological distress compared to moms of children with disabilities without autism." (Link to the article is provided at the end of this post.)
I recently raised the issue of sleep deprivation with my FaceBook group 'Survival Guide 4 Rainbow Moms & Carers (special needs kids). Not surprisingly, but with much frustration and personal sadness, was the number of Moms who personally wrote to me or posted to the group how they rely on sleeping tablets and other drugs to survive. This was no surprise to me because I have been addicted to sleeping tablets and analgesics (the strong ones!) in a desperate attempt to just get ONE DECENT NIGHT'S SLEEP! I messaged everyone this week about my high levels of anxiety that I attribute to sleep deprivation because I have had enough and thought it might be useful to others as well as myself if I shared my own personal struggles.
With three children on the autism spectrum, our house usually works like this: After putting Jacob and Aaron to sleep, Kristie struggles to get sleep and can be up until 12am. We can't get anything done around the house until she has gone to sleep because we feel stressed about her stressing at not being able to get to sleep. (This usually makes me feel really anxious and I start worrying about the next day!) Then Shane & I go to bed with a 1/2 clean home and make our way to bed around 1:30am. Low and behold, just as we are climbing into bed or not long after, one of our little boys makes an appearance. Whoever it is usually orders me to get them a bottle and go collect their dummy and ruggie from their room. Then 15-20 minutes later pesters me to take them to the toilet. Nappy then needs changing and sometimes even PJ's & bed sheets that are now wet through. Child eventually settles and we reluctantly lay our heads down for some sleep. BUT wouldn't you know it, a short time later the other son wakes up only to repeat the same routine (I guess they are identical twins after all). Sometimes this can be around 3 or 4am….. sometimes it is 6am.
Are you feeling tired just reading this, or are you shaking your head because this resembles your life?? Don't stop reading, there's more.....
Alarm goes off at 7am. Frankly.... who cares about that stupid alarm. I just want sleep! Alarm goes off for an hour when eventually the kids make us get up or we decide to make ourselves get up. Made panic takes over the house because we are going to get Kristie to school late again! School will be unhappy... more lectures about how important it is to get the kids to school on time.... Shane & I fight over whose fault it is we didn't get up early enough. Feeling depressed because of the late start to the day AND the house looks and feels like crap. I feel total despair. Shane comes down with a migraine and we can't stop fighting. More therapy forms needing to be filled in arrive in the mail along with ever increasing therapy bills. No one to call for help, nowhere to go, no in-home help to rectify the probems....simply because no services actually give you the in-home support you need to make things better….. What to do?
There’s still more, but I will stop now because I am starting to depress myself!
This week I had a particularly bad week. There have been a lot of factors here. 1. school holidays 2. change in routine 3. full moon 4. wet and windy weather 5. Constant screaming/demanding children 6. no sleep 7. no escape or a minutes respite away from the house (we do have in-home respite, but mostly too tired to go anywhere or we simply don't have the money to go out). 8. chaos in the home (I hate chaos) 9. messy & disorganized house.
That leads me to # 10. a desperate need to reach for the analgesic tablets in the hope they knock me out so I can't hear anything and sleep right through! I have only taken very few analgesics in recent times and only take them when my right leg sciatic pain gets too much for me. I had made a promise to myself since starting on a biomedical regime that I would no longer abuse my body by taking these types of drugs. I wish I had kept that promise to myself because although I had a good sleep that night, largely because Shane got up to the kids for me (poor thing only got 2 hrs sleep), it made me very sluggish. I couldn't wake myself up the next morning and spent the entire day in zombie mode. Then, I found myself getting more and more irritable, aggressive and angry. No one could do anything right and I ended up having a bad case of depression. I hadn't previously realized that this is the affect over the counter medication was having on me. I reflected on all the struggles I have had because of this feeling inside of me and felt somber when I realized I had done this to myself through self medicating. I have vowed to myself today to NEVER EVER take another one of those terrible and debilitating tablets again. I only hope I can keep my promise.
About 9 months ago I completed an extensive survey being conducted by the Women's and Children's Hospital in Adelaide, South Australia. This study was to look at the effects caring for a child with autism has on a Mom and their mental health. The study isn't completed yet, so it will be interesting to see what the outcomes are because I gave an honest and candid account of my everyday life! I was really excited to see, however, the following article from the New York Times entitled "The Stress of Autism", by Tara Parker-Pope, dated 14 July 2009. (http://well.blogs.nytimes.com/2009/07/14/for-mothers-the-stress-of-autism/) So much more research needs to be done on how caring for an autistic child, two or three, sometimes 4 or 5 even, has on the physical and mental health of us carers. We go through so much and our communities don't even know what it is we do go through, so how can they help? How can we expect empathy from our therapists, educators and neighbors when they get the impression we exaggerate everything? You can always tell when something thinks you are simply dribbling on about how difficult things can be. My personal pet hate is when you are trying to explain an autistic trait your child has and the person responds by saying “All children do that”. It seems that the only people who get it are our fellow ASD parents & carers.
HAPPY RAINBOWS
Allison :-)
Sunday, July 12, 2009
Our Children ARE Worth Celebrating
I want to introduce everyone to a very inspirational young lady from Scotland. I met Sam on Facebook and continue to be amazed by her positive outlook on life and how she so willingly advocates for other children with autism and promotes awareness to anyone who will listen. I see a lot of similarities between Sam and my daughter Kristie, who is just embarking on her journey to show people that just because you are on the autism spectrum, doesn't mean you aren't talented and can have a great life. :-)
Congratulations Sam. I look forward to hearing more of your music in the years to come and hope I have the great honor of getting the chance to meet you one day.
You can enjoy listening to Sam's music by going to her MySpace Page found at: http://www.myspace.com/samanthaemusic
Sam's bio.....
Samantha is 15 years old and has Autism with a pervasive communication disorder. Sam started singing before she even learned to talk and though she still can't communicate very well using speech... she makes the effort even if it doesn't come out right. She says she is not the best singer in the world, but she loves to sing and believes she has been very lucky to have the chance to share the songs she likes to sing.
Sam credits her success to the love and support of her family and friends who wouldn't let the "Autistic" label limit her potential. Most of all what Sam believes would be great is if her music helps raise "Autism Awareness" and makes people think differently about children who have Autism.
Aint That The Truth!!
This is something a good friend of mine from our Rainbow Land Play Time Family Group in Adelaide, Australia wrote and shared with her friends on Facebook. She has given me permission to publish it here so I can share it with everyone. I love it and I hope you do to. Thanks Nell.....
This holiday I have put Jirah in OSCH (holiday care) to help Garth recover from his heart surgery. Something I found fascinating is that you MUST send your child to care with a drink, however it cannot be juice, energy drinks, milk products, or cordial. Frankly I have just ignored them sending her with lime cordial and weathered their disapproving stares of a morning. Jirah is apparently berated daily for this misdemenour.Its funny isn't it? When I grew up cordial was certainly the drink of choice. Sometime in the eighties cordial became discouraged and blamed for hyperactivity and became instead replaced with juice as the drink of choice. In the nineties some bright spark suddenly discovered juice was loaded with fruit sugars (along with lots of vitamins and good things) and energy drinks became the "healthy" drink of choice - loaded with salt these drinks help to rehydrate! But no - in the naughties our drink companies became a little over enthusiastic and started loading energy drinks with caffeine to...well... aid with the energy component. Rightly so, another bright spark (or perhaps the same one) decided that caffeine and salt probably werent a great component for a nation with the highest incidence of heart disease.
I believe we are currently waiting for the 'new' drink - green tea with its antioxidants made an attempt but people just couldnt quite be fooled into thinking that a nine year old would find it consumable.So what are we left with? Well...water...obviously. So tell me, when water is available from every tap and water fountain why I need to actually pack a drink for my child? Ahh yes - thats right... (I hear the whispers of the parenting auditors) I should actually pay someone to package up tap water for me, put pictures of some glorious mountain stream on the front and then send her to OSCH with that. Parenting is all about guilt. Well its not really. Or at least it shouldnt be. But from the moment that tiny spark of life begins within your womb you are bombarded with what you 'should' and 'shouldnt' do. If anything goes wrong, then it must have been your fault somehow rather than some cosmic roll of the dice. When Jirah was born the nurses would not let me bath her. Apparently some bright spark had discovered that it was good for their skin to be covered in bloody afterbirth for days and it was wrong, oh so wrong, to wash her in evil soap as soon as she got here! What was I thinking?. Yet only three years later, as soon as Zech was dutifully slapped and uttered his first surprised yelp of indignation he was immediately ushered off for his first bath. (Thank God!).I am getting old and cynical and I am reminded of the words of Solomon - "There is nothing new under the sun - all is folly". Aint it just? Life just keeps going round and round. What happens once happens again. What is trendy today will be oh so yesterday tomorrow. Its just so hard to enjoy parenting when you are feeling guilty all the time. So screw societies trends. Up yours to the parenting auditors. I prefer to enjoy my children and do what "I" think is right. Got a problem with that?
Lets face it... by the time they are sixteen (give or take a few years) they will hate us anyway and decide that we were evil and out to make their lives difficult. And by the time they are thirty and have their own bundle of joy they will have re-created history yet again as they struggle with what drink to give their children.Vanity...all is vanity... I finally get it. Its because... we care.
This holiday I have put Jirah in OSCH (holiday care) to help Garth recover from his heart surgery. Something I found fascinating is that you MUST send your child to care with a drink, however it cannot be juice, energy drinks, milk products, or cordial. Frankly I have just ignored them sending her with lime cordial and weathered their disapproving stares of a morning. Jirah is apparently berated daily for this misdemenour.Its funny isn't it? When I grew up cordial was certainly the drink of choice. Sometime in the eighties cordial became discouraged and blamed for hyperactivity and became instead replaced with juice as the drink of choice. In the nineties some bright spark suddenly discovered juice was loaded with fruit sugars (along with lots of vitamins and good things) and energy drinks became the "healthy" drink of choice - loaded with salt these drinks help to rehydrate! But no - in the naughties our drink companies became a little over enthusiastic and started loading energy drinks with caffeine to...well... aid with the energy component. Rightly so, another bright spark (or perhaps the same one) decided that caffeine and salt probably werent a great component for a nation with the highest incidence of heart disease.
I believe we are currently waiting for the 'new' drink - green tea with its antioxidants made an attempt but people just couldnt quite be fooled into thinking that a nine year old would find it consumable.So what are we left with? Well...water...obviously. So tell me, when water is available from every tap and water fountain why I need to actually pack a drink for my child? Ahh yes - thats right... (I hear the whispers of the parenting auditors) I should actually pay someone to package up tap water for me, put pictures of some glorious mountain stream on the front and then send her to OSCH with that. Parenting is all about guilt. Well its not really. Or at least it shouldnt be. But from the moment that tiny spark of life begins within your womb you are bombarded with what you 'should' and 'shouldnt' do. If anything goes wrong, then it must have been your fault somehow rather than some cosmic roll of the dice. When Jirah was born the nurses would not let me bath her. Apparently some bright spark had discovered that it was good for their skin to be covered in bloody afterbirth for days and it was wrong, oh so wrong, to wash her in evil soap as soon as she got here! What was I thinking?. Yet only three years later, as soon as Zech was dutifully slapped and uttered his first surprised yelp of indignation he was immediately ushered off for his first bath. (Thank God!).I am getting old and cynical and I am reminded of the words of Solomon - "There is nothing new under the sun - all is folly". Aint it just? Life just keeps going round and round. What happens once happens again. What is trendy today will be oh so yesterday tomorrow. Its just so hard to enjoy parenting when you are feeling guilty all the time. So screw societies trends. Up yours to the parenting auditors. I prefer to enjoy my children and do what "I" think is right. Got a problem with that?
Lets face it... by the time they are sixteen (give or take a few years) they will hate us anyway and decide that we were evil and out to make their lives difficult. And by the time they are thirty and have their own bundle of joy they will have re-created history yet again as they struggle with what drink to give their children.Vanity...all is vanity... I finally get it. Its because... we care.
Wednesday, July 8, 2009
Kids Move to the Music
My good friend Grace organised this wonderful event through her inspiring organisation Autism Advisory & Support Services. I wanted to share it with everyone because it inspires me to do more for the kids, especially with music as my kids have achieved a lot through singing, dancing and playing musical instruments.
The article title is Kids Move to the Music: THE SOUNDS of Mozart delighted children and parents of the Autism Advisory Support Group recently.
http://liverpool-leader.whereilive.com.au/lifestyle/story/kids-move-to-the-music/
The article title is Kids Move to the Music: THE SOUNDS of Mozart delighted children and parents of the Autism Advisory Support Group recently.
http://liverpool-leader.whereilive.com.au/lifestyle/story/kids-move-to-the-music/
Tuesday, July 7, 2009
Rainbow Tribute
At the time the children were all diagnosed as being on the autism spectrum in July 2007, a good friend of mine Teresa Sandona and I had by then established a professional relationship while working together at the City of Tea Tree Gully (Adelaide, South Australia). Teresa was then and still is a member of the Home and Community Care Team in the Community Services Department. I worked in Human Resources Department as a HR Advisor. It was ironic that the people I had grown closest to at work, who all happened to work with Teresa, were the ones who were my greatest support then when I needed it the most. They are by the way still a very supportive network of friends for me now.
Following the diagnosis, Teresa rang me every single day to make sure I was okay and would often encourage me to get some fresh air by walking with her around Civic Park that was right next to the Council offices. I guess running exceptional community support programs for families just like mine put Teresa in a position where she knew the emotional distress I was facing and the extreme difficulties I was yet to face that I wasn’t even aware of.
Besides all that, Teresa has the most angelic of hearts and she was there as my support simply because she gave herself selflessly to me. I will be forever grateful to Teresa. Her words of wisdom kept me going during the most difficult of times and now they inspire me to not just get through the day, but to give myself to others as she did for me. She is for sure my most special earth angel.
Teresa was the one who brought rainbows into my life in a way that enabled me to see the beauty in each day no matter how challenging it was proving to be. It's ironic though, because all my children really love rainbows and find a rainbow of colour in anything! They instinctively know what cloud formation could produce a rainbow and search the sky until they find one. It's amazing how many they have found that I would never have noticed before. We have even seen an amazing number of double rainbows.
Following the diagnosis, Teresa rang me every single day to make sure I was okay and would often encourage me to get some fresh air by walking with her around Civic Park that was right next to the Council offices. I guess running exceptional community support programs for families just like mine put Teresa in a position where she knew the emotional distress I was facing and the extreme difficulties I was yet to face that I wasn’t even aware of.
Besides all that, Teresa has the most angelic of hearts and she was there as my support simply because she gave herself selflessly to me. I will be forever grateful to Teresa. Her words of wisdom kept me going during the most difficult of times and now they inspire me to not just get through the day, but to give myself to others as she did for me. She is for sure my most special earth angel.
Teresa was the one who brought rainbows into my life in a way that enabled me to see the beauty in each day no matter how challenging it was proving to be. It's ironic though, because all my children really love rainbows and find a rainbow of colour in anything! They instinctively know what cloud formation could produce a rainbow and search the sky until they find one. It's amazing how many they have found that I would never have noticed before. We have even seen an amazing number of double rainbows.
Just today I emailed Teresa because I have been struggling a bit lately with being frustrated and trapped about not being able to go out when I really need some time away by myself. Something always happens that keeps me housebound. I have been so frustrated that I feel like I am going to explode and it is not a healthy way to live. I emailed Teresa because she always keeps things real for me and somehow manages to say something that gets me to really feel my emotions. (I'm good at putting on a front!) The magical thing about Teresa is that she uses rainbow analogies to get a message across and so I want to share with you what she said to me today.
"It's ok for you to on occasion change your colour, get mad, get frustrated get fed up and get blaaaah... This needs to happen because most things are negotiable in life, Autism is not, and when you are trying to manage the things that are not negotiable it takes its toll, however if we relate it to my personal analogy of rainbows, all that frustration is the storm and the rain, and like after any storm and rain the rainbow appears. Most take it for granted, however one should always take notice of the colour because it's always a little different than the one before. We learn something new all the time and while everyday may not be a good day, there is always something in the day that may be good."
Thanks Teresa. I don't know what I would do without having you in my life. You are not just a wonderful support for me, but for so many other mothers like myself in our local community.
So, in Teresa's words.... HAPPY RAINBOWS.
Love Allison xxx
Sunday, July 5, 2009
Survival Guide 4 Rainbow Moms: a Big Success on Facebook
I am totally blown away by the response in such a short amount of time to the new Facebook Group that has been set up to support this blog. The Moms and Carers who have introduced themselves and shared their stories in such a positive way gives me those good feeling goosebumps. Thank you to all the people who have joined.
One Mom has shared poems that she has written about her beautiful daughter with us and has given me permission to publish them on my blog. Her it is...
Excuse me, She's Autistic
In the store we wait in line
I and my cinderella girl of mine
She spins, twirls, and her hands make gestures
All in her light blue cinderella gown
Other mothers are there
The glares have began
Do they not know how precious she is?
How much love is contained in her little body?
Just twirling to get out?
My child is getting loudershrill sound pierce the air
The glares demand wordsMy declaration:
"Excuse me she's Autistic".
Faces relax -but the glares remain
We move up in line
Why can't we in life
Somehow there has to be compromise
How I long for acceptance for my cinderella girl of mine.
Angela Utley, Tulsa, OK
Thank you Angela for allowing me to share your poem with everyone.
God bless all our Rainbow Moms and Carers. The world is a better place for having you.
Love Allison xxx
One Mom has shared poems that she has written about her beautiful daughter with us and has given me permission to publish them on my blog. Her it is...
Excuse me, She's Autistic
In the store we wait in line
I and my cinderella girl of mine
She spins, twirls, and her hands make gestures
All in her light blue cinderella gown
Other mothers are there
The glares have began
Do they not know how precious she is?
How much love is contained in her little body?
Just twirling to get out?
My child is getting loudershrill sound pierce the air
The glares demand wordsMy declaration:
"Excuse me she's Autistic".
Faces relax -but the glares remain
We move up in line
Why can't we in life
Somehow there has to be compromise
How I long for acceptance for my cinderella girl of mine.
Angela Utley, Tulsa, OK
Thank you Angela for allowing me to share your poem with everyone.
God bless all our Rainbow Moms and Carers. The world is a better place for having you.
Love Allison xxx
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