As a reader of several great blogs, I have noticed a lot of discussion on a certain blog where a mother vents her anger and bitterness regarding her childs ASD diagnosis. The New York Times also published an article called "The Unvarnished Reality of Autism" which was a reaction to a stress study on parent of children of autism. I truly feel for the mother whose reaction to this study was published and am glad that names were withheld for her childs sake. To go through life feeling this bitter and twisted must eat away at her soul everyday! I can't help but worry how her son will feel if he reads his mothers words when he grows up too and realises how much his mother resented her life with him... It made me sit back and question why I am a positive parent and haven't been consumed by the sardonic cloud that seems to envelop others. I think the answer lies in "Perspective Parenting", and the definition of normal.
I have been blessed to work with a lot of fabulous families over the years in my job and meet some of the most amazingly positive people. The children I work with all have varying degrees of disabilities, both physical and intellectual but all severely effected. They are all great kids, with different personalities, likes and dislikes with the one thing in common... their smiles light up the room. When I first started working with them I would have to "look past" the dis
ability where four years down the line, I see the child and not the restrictions their disabilities place on them. I have the utmost respect and admiration for the mother of some of the kids I work with. Where it could be expected of her to feel bitter or depressed, she is without doubt the most positive inspirational person I have ever met. Instead of wallowing in pity, she started a support group for parents of special needs children, councils and helps others, has unending energy and time for her kids, and is always celebrating any small gain they make. My life is a walk in the park in comparison so when I start to complain about Munchkin bolting or running off, I thank my lucky stars that she can without the aid of calipers and frames. When I moan about Munchkin not eating many food types or not wanting to try new foods, I remind myself to be grateful that she can eat, that she doesn't have to be peg fed, that she doesn't aspirate fluid from her foods down into her lungs.... When I get frustrated that Munchkin is still not toilet trained, I think of the health board nappies that she won't have to get as she can be trained, even if it takes a little longer. Perspective... its a great tool to use when it comes to giving us a self administered kick-up-the-bum! I'm not saying as a parent of a child with special needs that you can't attend a "pity party" occasionally, but don't overstay your welcome and become a permanent resident!Instead of dwelling on what Munchkin can't or won't do, I prefer to celebrate what she can do. She is an amazing, happy fun little girl and her possibilities are endless so long as the people who love her stay positive and never clip her wings with negativity and disappointment. Another mom I talk to asked me recently when I was telling her about certain events in my life "how do you stay normal?" Am I normal? What is normal? I don't know anymore. To me, my life with my three children is "my normal". Hammie from Hammiesblog coined a great phrase recently which I love "Neural otherness is awesome" Says it all really!
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16 comments:
We nearly lost Button to TB at 11 months old - so every day is a blessing. I know that things could be so much worse, we've got away very lightly in the grand scheme of things. Positivity is a choice, and I think it's a gift we can give our children.
love it, petunia! of course we all have our low days, but it's great when we reach the point of acceptance and just get on with it. my son is a huge souce of joy to our whole family too.
XXX
That was just wonderful..I too don't understand such anger and vitriol. It seems that many seem to focus on what they don't have rather than on what they do have. I have four amazing children-each are unique, different, individual...three of them just happen to be on the spectrum.
I read those articles.... and I can truly 'get' Julie's pain, and how she feels inside. I think she is just being completely honest about her feelings, and as a nurse I have come across these feelings time and time again. It is great if you can be positive, and have perspective, but sometimes people just cannot help how they feel. During our infertility years the pain I felt inside would probably shock people too, and to outsiders I would appear like I was a coper, a positive and inspirational person, and someone who accepted it all very well. But during the dark years there was so much pain and confusion and grieving.... I think sometimes it is healthy to express your feelings as long as you can move on somewhat and deal with things.
I think when someone believes that their child is disabled due to an accident ie birth asphyxia, or as in this case the Mom believes it was immunisations that triggered her daughter's autism, then I can understand how that is harder to accept...
I hope that both Mother's have some sort of peace soon, but I could understand if that peace didn't fully come too.
I really do get their pain Meadow, I truly do. As I said in my post, I think to feel this way day in day out must eat away at the soul. Unfortunately, when anger and resentment consumes you it can cloud your vision and you can miss what is good about your child. I spent too many wasted years angry about my first marriage and know how the only person it really destroys is you. I really do hope these mums and others in the same situation find a way to make peace with their situations.
I read back my post after your comment a few hours ago and thought long and hard about what you had said. It is very easy for me to sit up on my high horse and be patronising about how people should not have "pity parties" etc., and I should show a little more empathy in how I word things. However, I still feel strongly that their words can only do more harm than good to any child or adult with a disability such as aspergers, as they are so literal in their thoughts, and would interpret what has been printed as in their parents lives have been "destroyed"... I can only imagine how hurt Munchkin would be to think in future years that she had made my life so miserable (which she hasn't).
I can't blame immunisations on Munchkins aspergers. Hers is genetic, pure and simple. If I did suspect that it was something I had done or neglected to do that had caused her problems or my other childrens problems, perhaps I wouldn't have found my peace as easily. The anger might have consumed me too but I'd like to believe that I'd have found a way past it and become more positive.
I appreciate everyones comments and especially yours Meadow as it made me think a little more about compassion and understanding xx
Everyone deals with things differently, and I get your point re the children reading these kind of articles could feel very upset, I would hope that these blogs are written with some sort of anonymity, and as such then the bloggers can reveal their deepest feelings, and at the same time protect their children. It may be a cathartic thing, and as we all know that as time goes on, and healing and acceptance comes then feelings can change. I guess then that readers of these blogs can see the moving on and change of perspective etc..... it is also helpful for others to read and feel that others out there feel like them, and that is validating and somewhat of a relief to know you are not alone.
I agree that to be consumed by grief, and it becoming toxic is indeed damaging to yourself and to the family, but sometimes it's just a matter of working things through, and a bit of venting. I think in Julie's case she really feels a trmendous amount of guilt, and whether she has valid reasons or not for feeling guilty, then those guilty feelings are at the root of her grief and pain.
I can imagine her sitting at that dinner party with her friends and that comment hitting her like a ton of bricks..... So many people (unintentionally) minimise, or don't 'get' peoples pain and that is the real difficulty. Others canot be expected to 'get' these things, and therefore when people have any struggles in life ( sick child, infertility, divorce, death, long term illness, mental health issues) it is a lonely path.
I do understand your feelings on being positive and seeing the child and all the good things, but for many it is not that easy. I have a friend who has a child with severe cerebral palsy, and she is still so angry, sad and grief stricken 4 years on. She says to me she will never get over it, as she lost the child that she was meant to have, and that her child has so many struggles now. thanks for responding to me!! xx
Well written Petunia...another great post.
You've experienced this from a couple of angles.
I've read a lot about that woman's letter/blog post and then I finally found the time to read it for myself. Well, at least I tried to.
I have to say, my initial reaction as I read the first few verses was to think that maybe people are over re-acting a little. I honestly felt she was just expressing her hurt and dismay at the throwaway, flippant comment that her BEST (or 1 of them) friend had made. Yes, she was quite vehement in the words she chose to express her... umm..upset. But, I thought she was strongly fighting back by using all the events in her child's life that were truly difficult and by the use of sarcasm and well, swear words was highlighting how difficult things were. I wondered if she was just putting the argument across in the worst possible way to highlight the difference between how her friend saw her life and how it actually was?? I wasn't quite seeing it the way others were.
Half way through the piece though I wasn't quite sure and I kinda had enough to be honest. I definitley had issues with the "recovery " part.
See, I agree with the Pity Party... I too can spend some time there! But I always appreciated and enjoyed my child. It is good to express our feelings but I guess it's how we do it that matters. Yes, other people have it much worse but it did annoy me when others pointed that out to me when I was having a spectacularly hard day!
We're all entitled to feel dragged under... so long as we pick ourselves up after and don't spend too long there. We are all human after all! xx Jazzy
I understand it is essential to vent and have an output for the things that frustrate us when things are difficult and blogging is one medium to do so, however, to publish your innermost feelings in a national paper that is open to be read by anyone who has learned to do so is careless in my opinion. They are not privvy to the changing evolving blog that has highlighted both the highs and lows of special needs parenting, but a vitriol fuelled rant, without further explanation...
I hope your friend manages to find a way to deal with her grief. After anger and sadness there may come acceptance and eventually peace xx
But was the piece in the NY Times anonymous? I was not sure, but I read both the Mom's perspective, and the Adult with Aspergers, and i could see it from both sides. I did not for one second get the feeling that the mother thought her child was a monster, I think she was just trying to paint a true picture of the daily struggles, and she did say how much she loved her son.
Honestly, with my own struggles with certain issues with DD, and teh feeling that people don't truly understand how truly upsetting and difficult they can be... if I were to write an anonymous piece about it, I could possible use strong emotive language to accurately portray the struggles. Of course I would not want DD to read them, or maybe I would, but with open and honest discussion as an adult??
It's a tough one.
Ok, I have thought about this a lot over night, and I have had some sort of light bulb moment! I think now I get what it is you were trying to say. It is a fine line between feeling validated and supported in a forum etc, or on a private blog. However in a national newspaper an article like that (whilst a lot of people may feel the same feelings and have similar emotions) many may not feel like that, and articles like that can perpetuate the stereotypes about autism and aspergers etc.
I was thinking about my experiences with adoption, and how I have a need to read stuff where people discuss the hard issues such as attachment and PTSD and dev delay etc. It is a great resource and support network. However such raw articles in the papers can lead people to believe that all adopted children are unattached to their adoptive parents and have deep rooted problems and this is not the case for everyone. I know I am rambling, but trying to understand, and this is my way of understanding as I am not a parent of a child with an ASD. So I guess it's the newspaper article that I have more issues with, as in Blog land people can pick and choose which type of posts they most need to read....
Exactly Meadow, there is enough misconceptions and preconceived ideas about ASD out there without adding fuel to the stereotyping... Having somewhere private to vent when you are having a bad day (which everyone has sometimes) is essential and I've been lucky to have found support online with my facebook autie moms and dads, but what we discuss and say is private and not open to misinterpretation.
Aspergers is a complex condition and knowing a few adult aspies, will comment that quite often the written word is taken as a given, and where you would have the chance to have an open and adult discussion with your DD if she has issues, an aspie adult may not ask the question or seek clarification on what they have read. I think what I'm trying to say is that if articles like this are published in open media, then my fear is for the adult or adolescent with aspergers reading and assuming that this is how their parents felt too as they were growing up....
Great post and an interesting discusion.
I agree with Casdok! The discussion is as illuminating as the post. :-)
Well you know how I feel Petunia. Because of Taz,of Cathal's Mam and Nan and what they went through in the ICU (and the parents they met in the waiting room who were waiting to get the worst news)
And because of the people absolutely longing to be parents - whose bodies won't let them; I just don't think it is appropriate to be too tragic about a bit of autism. Yep, have a little moan amongst fellow autie friends. But in proportion. I have had to listen to a HFA mum complaining that she couldnt go to Panto with her kid - while the rest of us wished we could go a day without cleaning up a poo painting. And I fecking HATE Panto!!!
xx
I found that piece very difficult to read - as a parent I think it is so important to remember that our kids will grow up, and reflect on what we have said to them or about them. Parenting can be difficult, parenting a child with ASD even more so, but I think it is very important to remember that our children did not ask to be born and did not ask to be autistic - they are who they are and need to be respected for the people they were born to be. If as adults we have difficulty with that, we need to remember that it is OUR problem, not theirs. Our job is to find some way of accepting that and move through it to the other side. Thanks for your piece, it was great.
dont know how I missed this post Petunia. But once again its enlightening and reminds me of a conversation we had not so long ago. As you know 3 of my 4 have an ASD diagnosis, but I feel like such a fraud sometimes. I see folks out there who have things so much harder than me... non-verbal and so agressive.My lot have all gone through the speech delay (usually coming on the on board the language train around 3 1/2 - and then they wont shut up lol).
While my Boo had trouble toilet training, he still managed to get out of nappies by 4. My older boys attend mainstream and for the most part they are quite mild in comparison.
However, compared to NT children, my guys have some major issues both socially and sensory. My boys find it extremely difficult to mix with peers (although Munchkin will interact with adults no prob whereas Boo will shy away from everyone). I still feel like a fraud compared to others who seem to have a far more challenging and difficult time of things. But I guess thats why our support network is so important, for me it puts life into perspective. Makes me realise that sometimes life has a funny way of dealing you a double edged sword. ( like Munchkin with Aspergers and ADHD who is gifted, yet cannot understand why a boy in his class wont share his colouring pencils). Im glad my son is clever, but I yearn for him to understand social cues and expressions. For now he learns them off by heart - yet I know he doesnt actually understand them.
I used to love a good pity party, and a "I think you are so good with the boys" and "arent you terrific"... actually no, Im not terrific and sometimes I cant cope with the boys so I have a hot shower and a good cry. Im as good with my ASD boys as I would have been with NT boys, only Ive moved our life into Autism Street, which makes life for all of us so much easier. I dont go to pity parties anymore, but I wouldnt condemn someone for a bad day - but like Petunia so correctly put it, its fine to attend a pity party - just dont outstay your welcome.
There's nothing to be achieved by bitterness and your fantastic autistic child is developing as you while away the hours of self pity.
Much better to embrace the life you've been given, and realise that it'll always be different to the life you had expected, but its up to you how much better or worse you view it.
My love to you as always Petunia - great stuff xxx
Hennie
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