**The first part of this blog is written in response to a YouTube video, that I refuse to link, by someone trying to explain that he believes its perfectly ok to use the term 'retard' as a joke, as an insult. SO this is what I say to him, and to anyone else who is convinced its OK.**
How simple life must be when you can call someone a 'retard' in jest or to offend, and not think anything of it.
It must be so great to not have been told your child, your grandchild, your niece or nephew, brother or sister, or friend, has been diagnosed as 'mentally and/or physically retarded'(Whether at birth or later in life due to acquired brain injury). Someone in your life that you love and care for and would give anything for.
How fabulous to not live a life where you have witnessed what it's like to support and care for someone who cant care for themselves and needs daily assistance, but who's smile lights up your world.
How awesome it must be to not be involved or know someone who has a learning delay who strived so hard despite everything, to go through school and even college/uni/TAFE and is now working amongst the community, and still has so many wonderful goals they want to achieve.
You must feel so safe knowing that none of your family or friends have been in an accident and ended up with debilitating brain damage, and have had to fight against all odds and relearn to do things like walk and talk all over again.
You must feel so free and blissful;
...not having to care about these people, their family and friends, not having to have any respect for them.
...living life so oblivious to the people around you, that you haven't even noticed how many amazing people there really are fighting everyday to overcome the challenges life has thrown at them.
...living life so ignorant to the fact that one day...that person could be YOUR child, your niece, nephew, brother, sister, friend, friends child...One day that person could even be YOU.
I read so many articles about 'spreading to word, to end the word', and I believe and hope that 'we' are getting through, but I wonder if some of these articles and YouTube videos miss the point. Often they don't really explain the reasons for not using it, and what it really means to hear someone use the word 'retard' or 'spastic' in jest or as insult.
So being the open and honest person that I am, I am going to explain it CLEARLY AND SIMPLY.
When you call someone a 'retard' in jest or to be offensive and rude, whether to a close friend, when you really mean to say uncoordinated or silly, or to try and describe something/someone in a cruel way, what you are doing is devaluing and degrading the life of MY child, and anyone else who has been diagnosed with 'mental and/or physical retardation'.
You are saying that my son, who was diagnosed with 'SEVERE mental and physical retardation', is a joke, is disgusting, is something to laugh about.
My son, who through nobody's fault, was born with important parts of his brain (that control his functioning) missing; is JOKE to you?
My son who, yes, flaps his arms around, makes loud noises, and doesn't understand much beyond that he likes chocolate and reading books with his mummy, who is loved by MANY around him: is something to laugh about?
My son who will need me to change his nappy's, and spoon feed him, and help to do everything for, for the rest of his life.....but who's smile can light up a whole room.
My son who's body has to fight pain and illness on a regular basis, has had multiple surgeries, who despite what the dr's said, has leant to crawl, and may one day learn to walk.
My son whom might one day do inappropriate things in public, might seem awkward and anti-social, but who when you look past those things, accept those things as his normal is the most amazing wonderful precious boy.
The person whom I love so dearly, who grew inside me, who I gave birth to, who I care for and will give my absolute all to,.........someone who cant defend himself, someone who cant speak up on his own behalf....THAT'S who you are insulting.
And in turn that is why you are upsetting and hurting ME.... His family. His friends. His carers. EVERYONE who helps and cares for him.
So next time you go to use that word..to offend...joke...insult...take a moment to think....REALLY? ...DO YOU REALLY WANT TO USE a word used to medically describe children and adults all over the world who show the most incredible strength and determination in life imaginable as an insult?
Sunday, October 16, 2011
Mecp2 Duplication and Triplication Family Conference
Houston Texas 20011
So I have been struggling to try and put into words my thoughts and feelings about the conference…which yes…must be a first for me!!So I Have decided to break it up into three parts: “What a Drama….” “In all seriousness….” And end with “Some funnies..”
“What a Drama….”
you can read about the first drama's in a previous blog entry...but to put it short...
- our flight to Dallas was redirected to Houston as there was a storm in Dallas. Despite Houston being our final destination we were not allowed to get off the plane. We spent two and half hours on the tarmak before flying back to Dallas.
-when we stepped of the plane in Dallas we discovered our flight was cancelled, as were every other flight to Houston that day.-We had to stay overnight, unplanned, in Dallas, with no luggage and no clothes.
-We couldn't get back to Houston until late that afternoon but where too over it and tired to bother seeing anything in Dallas.
-When we finally go to Houston our Luggage was lost.
-We didn't have our luggage for another two days. so had to go and buy underwear and clothes at the local target. Thank Joann!-it was discovered that our luggage was at the wrong airport, but we were very glad when it arrived..and i think so was the hotel staff, who by day two.. knew me well...and I only had to step out the lift turn to the lobby desk with a "did our luggage turn up?' look on my face, for them to shake their heads...so I would back up the lift again.
We decided it wasn’t good enough that our luggage ended up at the wrong airport at the start, so we thought we might get lost and go to the wrong airport at the end! And after a $40 cab ride to Hobby airport a wait in the check in cue, we found out we had gone to the wrong airport! So a $60 cab ride later, and another wait in a cue(luckily we were early in the first place!) we were checked in and ready to head home!!
On our trip home we discovered that our seats had not been booked together. Scott and I laughed and said..oh well we will put CJ in his seat up the front of the plane, and head up to our seats up the back and leave him for someone else to look after. This is only funny because we knew of the impending VERY hard trip home with a grumpy boy who just wanted to be in his own space at home!
our tickets where changed...and we ended up in the same row, just with an isle between us. but this turned out ok. so one of us could have a little time out..then the other could occupy cj.
“In all seriousness….”
As soon as we stepped into the lobby of the Holliday Inn we walked into ‘Mecp2 Duplication and Triplication World’! Every time we popped down to the lobby, got into the lift, (sorry elevator - they don’t say lift in the USA), we met another family who were there for the conference. No matter what time you went to breakfast, lunch or dinner at the hotel restaurant or to the hotel lounge there was always someone there to chat and cry and share some sweet treats with, something I have come to miss being back at home.
It wasn’t hard to tell, the families who were there for the conference. It was quickly noted by all that all our boys have so many similar facial features and mannerisms.
Throughout the week there were many a late nights in that hotel lounge area, full of tears and laughter. Friendships were made between siblings who as soon as they met were arranging pool parties and sleep over’s and ways to keep in contact together in the future. Bonds between boys(and the two MDTS girls) were made. Mothers teared up as they watched their boys play and interact with each other, with their ‘mm mm’s’ and rocking and smiling at each other, it was like our boys had known each other forever.
Dad’s bonded over beers and pizza and discussions about sport and their boys.
Mothers cried and hugged, and laughed and joked. We held each others boys in our arms and amazed at the love we felt for a child we had only just met. Smiled as we admired each mother…their strength and courage. We ‘exchanged notes’ on the things that work for us, and the things that don’t. We talked about our worries, our guilt and fears. We comforted and supported each other. We established unbreakable bonds, rejoiced that we had all been brought together…but grieved for the reason why.
On the Wednesday and Thursdays before the Conference began many of the boys and family members had blood draws to be used for ongoing research for Mecp2 and surrounding regions duplication and triplication studies, at the Bayor Collage of Medicine.
Some of the children were also involved in skills testing and an eeg test. Cameron was asked to partake in these tests.
Although for some of the tests we will not receive the results back as they are for university study purposes only, I was glad that we could partake in them.
I am very interested to receive back the results of the skills tests, which we were told we will receive.
The conference officially started with the ‘Families Meet and Greet Dinner’ in the Hotel restaurant. A fun filled evening with raffles(I won a Mecp2 duplication shirt). Tim Tam Slams(see the Funnies section), eating a very yummy dinner, and meeting the families we had not yet met.
I personally would like to thank the families who put this event together, and thank Joann Meaux and her accomplices’ for the beautiful quilts that were given to each boy who attended the conference. And everyone who contributed a little something to the goodie bag we where all given.
The conference speeches began on Thursday afternoon after a complimentary lunch and the siblings and MDTS children signed into care with local volunteers.
Thursday’s part of the conference was focused around information on the genetic side of the syndrome, demonstration on what the genetic coding looks like on a wide range of the boys, showing the major differences in size of the duplicated/triplicated areas on the X chromosome. Although there is a wide degree of different sized duplications/triplications, it is the Mecp2 gene that is the common gene in EVERY duplication or triplication, and it is this gene that the dr’s believe and are proving with research is the gene that is causing most of the problems with the boys. It has so far been noted the size of the duplication or triplication does not relate to the severity of symptoms. At this point they don’t really know what creates the large spectrum of symptoms in the boys from mild to severe in occurrence, however, unfortunately, it is very obvious that those with the triplication present with much more severe symptoms than those with the duplication.
They also discussed the similarities in symptoms and affects that the duplication has with the deletion or mutation of the mecp2 gene as seen in the RETTS girls.We were also given a presentation on a small proportion of the current research being undertaken at the research facility, and were given a tour of the building including the lab being used specifically for Mecp2 related syndromes. At this point parents are asked not share the information that was given about research. To keep the information protected until it is officially in print.
Friday’s conference information was more symptom’s based. Specialists in Epilepsy, gastrointestinal problems, immunity, sleep, pulmonary complications, neurology and general therapies lead the days speeches.
There was a lot of information to take in. And I wont write it all here, but I am happy to share it with those who are interested.
Unfortunately due to extreme jet lag and exhaustion setting in I had to head home to the hotel for a sleep and missed the afternoon speeches, however these speeches (as well as most of the rest of the conference have been videos and I will be able to receive a copy of the video.
The conference ended with a pool party for all the families, at a lovely pool and playground area.
Some families stayed a while longer at the hotel(over the weekend) and enjoyed some time in the local area, at the children’s museum (we will have to go their next time!), the aquarium and other local tourist spots. Ofcource a trip to an IHOP was in order…I was very excited about this having never been to one..and I was not disappointed!!
Then over the next two days as families left for home, and more tears flowed. It was hard to say goodbye. Knowing we are all so far apart.
Arriving home was a strange feeling. Jet lagged, but relieved to be home, I felt kind of empty. It was a feeling of being isolated all over again. I knew I couldn’t just head down to hotel lounge area to find someone to talk to. I felt a million miles away AGAIN from those who understand.
But I do know that the bonds we have made will be unbroken and through facebook, skype and email, we will all stay in touch.
“Some funnies..”
One of the very first things we saw in Houston.. a rather large road side billboard
“183 WASNT ME – defence lawyers”
Driving through Houston a bit further on *TACO BELL*…… *Diabetes clinic*…..*Burger KING* All in a row…I kid you not. But I guess that really isn’t that funny!
Those crazy American’s! They do everything back-to-front…like drive on the wrong side of the road. Twice Scott or I went to hope in the passenger side of a taxi or friends car…to realise it was the drivers seat! The driving on the wrong side of the road can be quite a scary feeling when you are suffering from jetlag and over tiredness.
Tim tam’s - we had loads of fun at the meet and greet teaching the other parents the pleasures of Tim Tam slams!
Landing in Dallas and going through customs was kind of scary, we had to have our picture taken and our finger prints where also taken on a computer pad. And it was all VERY serious. Before take off to Houston the security checks again where very serious “do you have any guns, explosives, any weapons of any kind”.
I was frisked, because I had baby food that I didn’t want opened..so they had to check I didn’t have another kind of fluid on me that I might mix with the baby food to create a bomb. Which to me makes absolutely no sense what-so-ever…seen as they didn’t frisk Scott. Who’s to say he didn’t have something on him?
Anyway….the funny part….we had to giggle, when we arrived home in Queensland Australia, and were stopped by the security dog, for a split second fear hit(I have no idea why.. we knew we weren’t carry guns or explosives)….until the dogs guard asked “You got any Banana’s in there?”
Walking over to the children's hospital i saw a Squirrel! I got very excited! Apparently its not 'cool' to get so excited about squirrels. :)
I know there were lots more funny things...I'll add them when I remember!
I want to end with a MASSIVE MASSIVE HUGE GIGANTIC..words cant describe..how thankful we are to all of those who helped us make this trip a reality.
So I have been struggling to try and put into words my thoughts and feelings about the conference…which yes…must be a first for me!!So I Have decided to break it up into three parts: “What a Drama….” “In all seriousness….” And end with “Some funnies..”
“What a Drama….”
you can read about the first drama's in a previous blog entry...but to put it short...
- our flight to Dallas was redirected to Houston as there was a storm in Dallas. Despite Houston being our final destination we were not allowed to get off the plane. We spent two and half hours on the tarmak before flying back to Dallas.
-when we stepped of the plane in Dallas we discovered our flight was cancelled, as were every other flight to Houston that day.-We had to stay overnight, unplanned, in Dallas, with no luggage and no clothes.
-We couldn't get back to Houston until late that afternoon but where too over it and tired to bother seeing anything in Dallas.
-When we finally go to Houston our Luggage was lost.
-We didn't have our luggage for another two days. so had to go and buy underwear and clothes at the local target. Thank Joann!-it was discovered that our luggage was at the wrong airport, but we were very glad when it arrived..and i think so was the hotel staff, who by day two.. knew me well...and I only had to step out the lift turn to the lobby desk with a "did our luggage turn up?' look on my face, for them to shake their heads...so I would back up the lift again.
We decided it wasn’t good enough that our luggage ended up at the wrong airport at the start, so we thought we might get lost and go to the wrong airport at the end! And after a $40 cab ride to Hobby airport a wait in the check in cue, we found out we had gone to the wrong airport! So a $60 cab ride later, and another wait in a cue(luckily we were early in the first place!) we were checked in and ready to head home!!
On our trip home we discovered that our seats had not been booked together. Scott and I laughed and said..oh well we will put CJ in his seat up the front of the plane, and head up to our seats up the back and leave him for someone else to look after. This is only funny because we knew of the impending VERY hard trip home with a grumpy boy who just wanted to be in his own space at home!
our tickets where changed...and we ended up in the same row, just with an isle between us. but this turned out ok. so one of us could have a little time out..then the other could occupy cj.
“In all seriousness….”
As soon as we stepped into the lobby of the Holliday Inn we walked into ‘Mecp2 Duplication and Triplication World’! Every time we popped down to the lobby, got into the lift, (sorry elevator - they don’t say lift in the USA), we met another family who were there for the conference. No matter what time you went to breakfast, lunch or dinner at the hotel restaurant or to the hotel lounge there was always someone there to chat and cry and share some sweet treats with, something I have come to miss being back at home.
It wasn’t hard to tell, the families who were there for the conference. It was quickly noted by all that all our boys have so many similar facial features and mannerisms.
Throughout the week there were many a late nights in that hotel lounge area, full of tears and laughter. Friendships were made between siblings who as soon as they met were arranging pool parties and sleep over’s and ways to keep in contact together in the future. Bonds between boys(and the two MDTS girls) were made. Mothers teared up as they watched their boys play and interact with each other, with their ‘mm mm’s’ and rocking and smiling at each other, it was like our boys had known each other forever.
Dad’s bonded over beers and pizza and discussions about sport and their boys.
Mothers cried and hugged, and laughed and joked. We held each others boys in our arms and amazed at the love we felt for a child we had only just met. Smiled as we admired each mother…their strength and courage. We ‘exchanged notes’ on the things that work for us, and the things that don’t. We talked about our worries, our guilt and fears. We comforted and supported each other. We established unbreakable bonds, rejoiced that we had all been brought together…but grieved for the reason why.
On the Wednesday and Thursdays before the Conference began many of the boys and family members had blood draws to be used for ongoing research for Mecp2 and surrounding regions duplication and triplication studies, at the Bayor Collage of Medicine.
Some of the children were also involved in skills testing and an eeg test. Cameron was asked to partake in these tests.
Although for some of the tests we will not receive the results back as they are for university study purposes only, I was glad that we could partake in them.
I am very interested to receive back the results of the skills tests, which we were told we will receive.
The conference officially started with the ‘Families Meet and Greet Dinner’ in the Hotel restaurant. A fun filled evening with raffles(I won a Mecp2 duplication shirt). Tim Tam Slams(see the Funnies section), eating a very yummy dinner, and meeting the families we had not yet met.
I personally would like to thank the families who put this event together, and thank Joann Meaux and her accomplices’ for the beautiful quilts that were given to each boy who attended the conference. And everyone who contributed a little something to the goodie bag we where all given.
The conference speeches began on Thursday afternoon after a complimentary lunch and the siblings and MDTS children signed into care with local volunteers.
Thursday’s part of the conference was focused around information on the genetic side of the syndrome, demonstration on what the genetic coding looks like on a wide range of the boys, showing the major differences in size of the duplicated/triplicated areas on the X chromosome. Although there is a wide degree of different sized duplications/triplications, it is the Mecp2 gene that is the common gene in EVERY duplication or triplication, and it is this gene that the dr’s believe and are proving with research is the gene that is causing most of the problems with the boys. It has so far been noted the size of the duplication or triplication does not relate to the severity of symptoms. At this point they don’t really know what creates the large spectrum of symptoms in the boys from mild to severe in occurrence, however, unfortunately, it is very obvious that those with the triplication present with much more severe symptoms than those with the duplication.
They also discussed the similarities in symptoms and affects that the duplication has with the deletion or mutation of the mecp2 gene as seen in the RETTS girls.We were also given a presentation on a small proportion of the current research being undertaken at the research facility, and were given a tour of the building including the lab being used specifically for Mecp2 related syndromes. At this point parents are asked not share the information that was given about research. To keep the information protected until it is officially in print.
Friday’s conference information was more symptom’s based. Specialists in Epilepsy, gastrointestinal problems, immunity, sleep, pulmonary complications, neurology and general therapies lead the days speeches.
There was a lot of information to take in. And I wont write it all here, but I am happy to share it with those who are interested.
Unfortunately due to extreme jet lag and exhaustion setting in I had to head home to the hotel for a sleep and missed the afternoon speeches, however these speeches (as well as most of the rest of the conference have been videos and I will be able to receive a copy of the video.
The conference ended with a pool party for all the families, at a lovely pool and playground area.
Some families stayed a while longer at the hotel(over the weekend) and enjoyed some time in the local area, at the children’s museum (we will have to go their next time!), the aquarium and other local tourist spots. Ofcource a trip to an IHOP was in order…I was very excited about this having never been to one..and I was not disappointed!!
Then over the next two days as families left for home, and more tears flowed. It was hard to say goodbye. Knowing we are all so far apart.
Arriving home was a strange feeling. Jet lagged, but relieved to be home, I felt kind of empty. It was a feeling of being isolated all over again. I knew I couldn’t just head down to hotel lounge area to find someone to talk to. I felt a million miles away AGAIN from those who understand.
But I do know that the bonds we have made will be unbroken and through facebook, skype and email, we will all stay in touch.
“Some funnies..”
One of the very first things we saw in Houston.. a rather large road side billboard
“183 WASNT ME – defence lawyers”
Driving through Houston a bit further on *TACO BELL*…… *Diabetes clinic*…..*Burger KING* All in a row…I kid you not. But I guess that really isn’t that funny!
Those crazy American’s! They do everything back-to-front…like drive on the wrong side of the road. Twice Scott or I went to hope in the passenger side of a taxi or friends car…to realise it was the drivers seat! The driving on the wrong side of the road can be quite a scary feeling when you are suffering from jetlag and over tiredness.
Tim tam’s - we had loads of fun at the meet and greet teaching the other parents the pleasures of Tim Tam slams!
Landing in Dallas and going through customs was kind of scary, we had to have our picture taken and our finger prints where also taken on a computer pad. And it was all VERY serious. Before take off to Houston the security checks again where very serious “do you have any guns, explosives, any weapons of any kind”.
I was frisked, because I had baby food that I didn’t want opened..so they had to check I didn’t have another kind of fluid on me that I might mix with the baby food to create a bomb. Which to me makes absolutely no sense what-so-ever…seen as they didn’t frisk Scott. Who’s to say he didn’t have something on him?
Anyway….the funny part….we had to giggle, when we arrived home in Queensland Australia, and were stopped by the security dog, for a split second fear hit(I have no idea why.. we knew we weren’t carry guns or explosives)….until the dogs guard asked “You got any Banana’s in there?”
Walking over to the children's hospital i saw a Squirrel! I got very excited! Apparently its not 'cool' to get so excited about squirrels. :)
I know there were lots more funny things...I'll add them when I remember!
I want to end with a MASSIVE MASSIVE HUGE GIGANTIC..words cant describe..how thankful we are to all of those who helped us make this trip a reality.
Monday, Nov 1, 2010 Communications Shutdown
To raise money and awareness for the challenges faced by those affected by Autism Spectrum Disorder a App and challenge was devised for facebook and Twitter uses to shut down their accounts for 24 hours. The app included a symbol of a red speaking bubble with a line through it placed over your avitar picture, and automatic status updates announcing your absence from Facebbok/twitter for the day.
To get the app or CHAPP as they called it you had to first make a donation, money from these donations will be given to registered ASD organisations in your country.
Being that my son has a syndrome with ASD like characteristics, and I now have many friends who's children have degrees of ASD I was definitely enthusiastic to participate.
The night before however I was thinking, this just isnt enough. Whilst I do agree its a great idea, I dont believe that shutting down only facebook and twitter gives anyone much of an idea of what its like to have ASD.
So, I made a pledge to close down ALL my usual methods of communication for the 24 hours. This included facebook, email, blogger, texting and making phone calls, and SPEAKING.
I made a Badge to wear that clearly advertised the cause and what I was doing.
Then from 9:00pm the evening before I began my challenge.
I showed my husband my Badge, he teased me, joking that I would never get through a day without talking! I gave him my first attempt at non-verbal communication, a dreadful mime of "Happy Birthday, I love you!". We hugged and he shook his head in disbelief then wished me luck.
I went to bed, and thats when it hit me. The anxiety. Wondering about how it would go the next day. How would I be able to get my message across. Would people understand me? Would people think I was weired and strange? Would people laugh at me, or would they accept what what i was doing?
What sort of frustrations am I going to face? Trying to plan out in my head how to get around all our usual situations on a Monday; My eldest being dropped ff at his special needs kindy, taking my youngest to swimming class, picking up my eldest, visiting my family, and shopping. Worrying about what might happen that i am not prepared for. Tossing and turning thinking about the complications of the next day.
Then I realised, WOW, thats what its like.
This experience is not just about not being able to communicate, its about the fears and apprehensions that come with that.
Imagine everyday facing the fact that people will likely not understand you, will not know what you want, will stare at you and glare at you. Knowing people will have expectations of you that you know you cant live up to, no matter how hard you try.
Imagine all this, planning and preparing for the day to come, having your systems and routines planned and ready, then having things changed on you, having to face challenges you were not ready for.
On the day; I donned my badge, took a deep breath and set about my day.
My boys; I had to make the exception of speaking to my son's and incase of emergencies, however I tried to communicate with my boys with as little speaking as possible. My eldest of course who lives this life, was to my knowledge not concerned, in all probability he was probably glad to have me so silent! Hee hee!
My youngest was definitely aware something was going on, he kept giving me extra hugs, and joined in with some of my signing(I have been teaching him Makaton; key word signing, since he was born, so he knows a few).
I sent my husband off to work with a few hand gestures and a big hug!
ECDP(My son's Special Needs Kindy): I had some nerves as I approached the building, however I was confident they would accept what I was doing and that communication would not be a huge difficulty as they also know Makaton. I was right, they praised me for my efforts, and I dropped and also collected my son with ease. Even being able to communicate that he would be away the following day, that I would like him to wear his AFO's for 20 minutes, and some communication with other parents, who were all very accepting and happy about what I was doing, and who also made donations towards the cause.
Swimming lessons; As we approached Aquatic Achievers swimming class my nerves and anxiety increased dramatically, the first thing I noticed that I did straight away was to think about peak times at the front desk, and then I proceeded to wait in the car until it was a time I knew that the desk would be clear and I would not have to face too many people.
Things went smoother than I had imagined, staff read my badge and smiled and praised me for my efforts and made contributing donations to the cause. I was able to sign-in my son in for his lesson, pay the due fee's and notify the coach with ease. The class itself was not a complication at all, its very routine, myself and my son had no trouble completing the class with very little communication, except for the "name, ready, go" command which I did use for safety purposes.
The hardest parts were the coach explaining to the rest of the group what I was doing, at that point my anxiety rose again as I braced for the facial reactions of the group. But I was proud and excited to see smiles of acceptance on their faces.
Another parent kindly helped out in giving the coach my name for the introductory song.
Shopping; Again my anxiety levels rose as I contemplated the challenges I was about to face. The first thing I noticed was the uncomfortable feeling of thinking that everyone was looking at me, with my big badge hanging off my shirt. Regardless of whether they were looking or not I found myself dropping my eyes, and avoiding eye contact.
The Bakery; The assistant read my badge immediately, she smiled and I pointed to the item I was after. I paid in cash and found the transaction quite quick and easy.
The Health-food shop; This was a little harder, I am a regular in the shop and was greeted immediately, the problem though became that the item I needed was not on the shelf, I panicked as I struggled to think if a way to communicate to the assistant what I was after. I started by pointing to the empty section on the shelf, however the shop has no labels and things are moved around at times, so the assistant had no idea what product was missing from that area. She started to list off some items that area usually found in that area. It was quiet frustrating at this point to know it could be a long time before she would think of "Pear juice concentrate"! I kind of wish this situation had of become more complicated, but as she listed I continued to search the shelf area, and then found what I was looking for, just in a different brand, I decided to just take that brand. The check-out counter was easy, and also somewhat exciting as the assistant then signed "thank-you" to me. It brought my confidence up to have someone join into my world and use my form of communication.
Fresh Sensations; Fruit, veg and deli; With my confidence up a bit, and also knowing I was entering a store where all the staff knew me quite well I walked in with my head held high. Ordering my regular over the counter meat was a brease combining pointing and hand gestures. Paying at the check-out was also easy as the staff knew how I would be paying. This shop trip for me is pretty much routine, so I felt comfortable and confident, however i did feel a little uneasy at the check-out when I all i could do was stand there and not make my usual conversation, again i found myself dropping eye contact.
The chemist; I knew that this transaction would not be so easy. I had to request a cream for my son. As I approached the counter my new found confidence dropped, and nerves again set in. I showed the assistant my badge, she read it and smiled and I mimed writing on paper. She found some paper, and I wrote down my request. To my surprise, rather than voice her questions about my request she too wrote on the paper to continue our communication. This was surprisingly nice, again I appreciated that someone was joining me in my method of communication. I also liked the feeling that likely she was having a taste of my world(albeit my world for only one day) and experiencing what it is like to have to communicate to someone non-verbally. A chemist also became involved in confirming I was purchasing the right product. Throughout this a mother I know through the special Kindy approached the desk, she quickly identified what I was doing, and praised me for my efforts. It was nice and again confidence building and exciting to see someone I knew. Someone I knew who understood me.
A visit to my family; this was the place I felt most relaxed. With my mother and my sisters. The interaction with my family was fairly easy. They too know Makaton signs, and also they KNOW ME. Although at points I did become frustrated not being able to get my point or message across, it was comforting that my family gave me time to communicate properly with them, and helped me convay my message.
The rest of the day was spent at home, doing routine things, so i felt comfortable and confident. I did at points have stress increases when my dogs barked and I worried that someone was coming to the gate however I did not have to face such a challenge.
It was a challenging day, I really appreciated the support I received throughout the day. I know however this is only a small snippet of what it is like for someone with ASD to not be able to communicate in the way the majority does. And not just those with ASD, there are many others in our community who face these challenges all their life.
I hope that in my efforts I also opened the minds of those around me, at the shops etc to think about the complications others face in their lives. Things that in general we all take for granted.
I would like to give a huge thank-you to those who made donations to my cause either directly to Communicationshutdown.org or to myself(who will direct the money to the organisation).
I would also like to thank all of those who turned their Facebook and twitter off for the day. And those who supported me throughout the day.
It was certainly an eye opening experience, even as a mother of a child with ASD like symptoms, I cannot understand completely what it is like, however this day gave me a greater understanding of the anxieties that my son and others face daily.
To get the app or CHAPP as they called it you had to first make a donation, money from these donations will be given to registered ASD organisations in your country.
Being that my son has a syndrome with ASD like characteristics, and I now have many friends who's children have degrees of ASD I was definitely enthusiastic to participate.
The night before however I was thinking, this just isnt enough. Whilst I do agree its a great idea, I dont believe that shutting down only facebook and twitter gives anyone much of an idea of what its like to have ASD.
So, I made a pledge to close down ALL my usual methods of communication for the 24 hours. This included facebook, email, blogger, texting and making phone calls, and SPEAKING.
I made a Badge to wear that clearly advertised the cause and what I was doing.
Then from 9:00pm the evening before I began my challenge.
I showed my husband my Badge, he teased me, joking that I would never get through a day without talking! I gave him my first attempt at non-verbal communication, a dreadful mime of "Happy Birthday, I love you!". We hugged and he shook his head in disbelief then wished me luck.
I went to bed, and thats when it hit me. The anxiety. Wondering about how it would go the next day. How would I be able to get my message across. Would people understand me? Would people think I was weired and strange? Would people laugh at me, or would they accept what what i was doing?
What sort of frustrations am I going to face? Trying to plan out in my head how to get around all our usual situations on a Monday; My eldest being dropped ff at his special needs kindy, taking my youngest to swimming class, picking up my eldest, visiting my family, and shopping. Worrying about what might happen that i am not prepared for. Tossing and turning thinking about the complications of the next day.
Then I realised, WOW, thats what its like.
This experience is not just about not being able to communicate, its about the fears and apprehensions that come with that.
Imagine everyday facing the fact that people will likely not understand you, will not know what you want, will stare at you and glare at you. Knowing people will have expectations of you that you know you cant live up to, no matter how hard you try.
Imagine all this, planning and preparing for the day to come, having your systems and routines planned and ready, then having things changed on you, having to face challenges you were not ready for.
On the day; I donned my badge, took a deep breath and set about my day.
My boys; I had to make the exception of speaking to my son's and incase of emergencies, however I tried to communicate with my boys with as little speaking as possible. My eldest of course who lives this life, was to my knowledge not concerned, in all probability he was probably glad to have me so silent! Hee hee!
My youngest was definitely aware something was going on, he kept giving me extra hugs, and joined in with some of my signing(I have been teaching him Makaton; key word signing, since he was born, so he knows a few).
I sent my husband off to work with a few hand gestures and a big hug!
ECDP(My son's Special Needs Kindy): I had some nerves as I approached the building, however I was confident they would accept what I was doing and that communication would not be a huge difficulty as they also know Makaton. I was right, they praised me for my efforts, and I dropped and also collected my son with ease. Even being able to communicate that he would be away the following day, that I would like him to wear his AFO's for 20 minutes, and some communication with other parents, who were all very accepting and happy about what I was doing, and who also made donations towards the cause.
Swimming lessons; As we approached Aquatic Achievers swimming class my nerves and anxiety increased dramatically, the first thing I noticed that I did straight away was to think about peak times at the front desk, and then I proceeded to wait in the car until it was a time I knew that the desk would be clear and I would not have to face too many people.
Things went smoother than I had imagined, staff read my badge and smiled and praised me for my efforts and made contributing donations to the cause. I was able to sign-in my son in for his lesson, pay the due fee's and notify the coach with ease. The class itself was not a complication at all, its very routine, myself and my son had no trouble completing the class with very little communication, except for the "name, ready, go" command which I did use for safety purposes.
The hardest parts were the coach explaining to the rest of the group what I was doing, at that point my anxiety rose again as I braced for the facial reactions of the group. But I was proud and excited to see smiles of acceptance on their faces.
Another parent kindly helped out in giving the coach my name for the introductory song.
Shopping; Again my anxiety levels rose as I contemplated the challenges I was about to face. The first thing I noticed was the uncomfortable feeling of thinking that everyone was looking at me, with my big badge hanging off my shirt. Regardless of whether they were looking or not I found myself dropping my eyes, and avoiding eye contact.
The Bakery; The assistant read my badge immediately, she smiled and I pointed to the item I was after. I paid in cash and found the transaction quite quick and easy.
The Health-food shop; This was a little harder, I am a regular in the shop and was greeted immediately, the problem though became that the item I needed was not on the shelf, I panicked as I struggled to think if a way to communicate to the assistant what I was after. I started by pointing to the empty section on the shelf, however the shop has no labels and things are moved around at times, so the assistant had no idea what product was missing from that area. She started to list off some items that area usually found in that area. It was quiet frustrating at this point to know it could be a long time before she would think of "Pear juice concentrate"! I kind of wish this situation had of become more complicated, but as she listed I continued to search the shelf area, and then found what I was looking for, just in a different brand, I decided to just take that brand. The check-out counter was easy, and also somewhat exciting as the assistant then signed "thank-you" to me. It brought my confidence up to have someone join into my world and use my form of communication.
Fresh Sensations; Fruit, veg and deli; With my confidence up a bit, and also knowing I was entering a store where all the staff knew me quite well I walked in with my head held high. Ordering my regular over the counter meat was a brease combining pointing and hand gestures. Paying at the check-out was also easy as the staff knew how I would be paying. This shop trip for me is pretty much routine, so I felt comfortable and confident, however i did feel a little uneasy at the check-out when I all i could do was stand there and not make my usual conversation, again i found myself dropping eye contact.
The chemist; I knew that this transaction would not be so easy. I had to request a cream for my son. As I approached the counter my new found confidence dropped, and nerves again set in. I showed the assistant my badge, she read it and smiled and I mimed writing on paper. She found some paper, and I wrote down my request. To my surprise, rather than voice her questions about my request she too wrote on the paper to continue our communication. This was surprisingly nice, again I appreciated that someone was joining me in my method of communication. I also liked the feeling that likely she was having a taste of my world(albeit my world for only one day) and experiencing what it is like to have to communicate to someone non-verbally. A chemist also became involved in confirming I was purchasing the right product. Throughout this a mother I know through the special Kindy approached the desk, she quickly identified what I was doing, and praised me for my efforts. It was nice and again confidence building and exciting to see someone I knew. Someone I knew who understood me.
A visit to my family; this was the place I felt most relaxed. With my mother and my sisters. The interaction with my family was fairly easy. They too know Makaton signs, and also they KNOW ME. Although at points I did become frustrated not being able to get my point or message across, it was comforting that my family gave me time to communicate properly with them, and helped me convay my message.
The rest of the day was spent at home, doing routine things, so i felt comfortable and confident. I did at points have stress increases when my dogs barked and I worried that someone was coming to the gate however I did not have to face such a challenge.
It was a challenging day, I really appreciated the support I received throughout the day. I know however this is only a small snippet of what it is like for someone with ASD to not be able to communicate in the way the majority does. And not just those with ASD, there are many others in our community who face these challenges all their life.
I hope that in my efforts I also opened the minds of those around me, at the shops etc to think about the complications others face in their lives. Things that in general we all take for granted.
I would like to give a huge thank-you to those who made donations to my cause either directly to Communicationshutdown.org or to myself(who will direct the money to the organisation).
I would also like to thank all of those who turned their Facebook and twitter off for the day. And those who supported me throughout the day.
It was certainly an eye opening experience, even as a mother of a child with ASD like symptoms, I cannot understand completely what it is like, however this day gave me a greater understanding of the anxieties that my son and others face daily.
Tuesday, Dec14, 2010 A Letter to a Friend
I was corresponding with a friend today that i haven't spoken to in a while.
I thought I should share one of my messages;
"I have had a really awful year. Struggling with my grief. But feel as though I am getting better control of my emotions.
I feel like I hit a point at the start of this year where everyone felt I should be ok now. That I should be moving on and just dealing with it.
It felt like no one cared anymore. And no one had the energy to support my grief anymore.(with the exception of my very close friends)
When the reality was I hit grief at it's worse. I came out of the ..'I can do this, I can fix him, I can cure him, I will DO everything I can and he will be fine' stage. Into the realization that no matter what I do, I can't send this away. Wether he dies young, or lives for many years needing my constant help and support..the future is going to be sooo hard. And very scary.
I hit a huge road block in a way.
I had a lot of anger. And pretty much hated everyone and everything. Hence why I ended up in fights with lots of people. And failed to return friendship to others. I guess this stage of my grief was the hardest for others to take. Unless you experience this first hand you can't understand the unforgiving grief I face EVERYDAY. People couldn't understand why I was getting so hard to deal with and why I really didn't care about anyone's life but my son's and my own. And why I made so many mistakes with friendships, but just needed to be forgiven.
During this I started to realize the true reality of my life. That everyone else will move on. And expect me to move on. They will just see Master 3 as he is. I love him to bits, but I will always still see his pain, and witness his delays and struggles. Even if everyone else starts to forget for me it will never go away.
So I have to learn for the most part I am on my own. No one can really or TRUELY give me the emotional support I need. I need to find that from within.
Not many will understand what it's like to have held my son, and wanted him die, to take away the pain for him and me, but in the same breath wanted so badly to have him forever. Not many will understand that I am not making excuses for my bad behavior, the mistakes I make, not being there to support others, or lack of care for others menial issues, I am not trying to 'milk it', or think I deserve everything on a silver platter because I have a child with special needs.
It's just MY LIFE. And there is not much I can do to change it.
So I am just trying to do the best I can with what I have been given. And give my family what they deserve."
My friend replied, and I hope she doesn't mind i shared;
"Oh wow, I dont know how to respond but i feel i must.....
I totally hear you, I don't "know" because I am not living your life, but I am always listening, I hear you, I care. I am open, Say what needs to be said, I will give my ear and my compassion. ( I hope you understand what i mean by this!)
I don't think anyone can or should judge you for anything, you are on a journey none could imagine. It must be so intense and so full of emotion, I think its a testament to the woman that you are that you continue to feel so much. After so many years of grief, many would numb and move on. But your heart is so full of love, and your life so full of extremes that how else to react than with emotion???
I am so sorry to hear that he is weaker than he was, that must be heartbreaking for your family. I think your grief process sounds like a natural progression...and even though it would be hard, its probably a good evolution. It is a parents natural reaction to want to work really hard to help a child overcome anything, and you "i can fix this " attitude is what we would all want to do. But as you say, its reality that it wont go away, and all you can do is take it as it comes. Grief is always a rollercoaster though!
You are right that you need to rely on your own strength to get through this as people will start to move on and you will be faced wit it every day......but I dont think that means that people will stop caring.
A quote from the Buddha " let yourself be open and life will be easier" is something I always bring to mind - be open with yourself and open to others and more understanding will happen. I dont mean life will be a piece of cake! Or all the troubles will go away! But sharing can make people understand and empathise more and bring up more compassion - and if they react negatively ( like the silver platter comments or excuses for your behaviour comments) they is their issues, and they arent living open heartedly."
its always so nice to get a perspective from someone else. To realise that its not as bad as you think. although some people want me to move on, and cant bare the continuous hard part of my life, there are still many who are a 'shoulder to cry on', when I really need it. Its nice to be reminded that although people go on with their own lives, that they do still care.
I thought I should share one of my messages;
"I have had a really awful year. Struggling with my grief. But feel as though I am getting better control of my emotions.
I feel like I hit a point at the start of this year where everyone felt I should be ok now. That I should be moving on and just dealing with it.
It felt like no one cared anymore. And no one had the energy to support my grief anymore.(with the exception of my very close friends)
When the reality was I hit grief at it's worse. I came out of the ..'I can do this, I can fix him, I can cure him, I will DO everything I can and he will be fine' stage. Into the realization that no matter what I do, I can't send this away. Wether he dies young, or lives for many years needing my constant help and support..the future is going to be sooo hard. And very scary.
I hit a huge road block in a way.
I had a lot of anger. And pretty much hated everyone and everything. Hence why I ended up in fights with lots of people. And failed to return friendship to others. I guess this stage of my grief was the hardest for others to take. Unless you experience this first hand you can't understand the unforgiving grief I face EVERYDAY. People couldn't understand why I was getting so hard to deal with and why I really didn't care about anyone's life but my son's and my own. And why I made so many mistakes with friendships, but just needed to be forgiven.
During this I started to realize the true reality of my life. That everyone else will move on. And expect me to move on. They will just see Master 3 as he is. I love him to bits, but I will always still see his pain, and witness his delays and struggles. Even if everyone else starts to forget for me it will never go away.
So I have to learn for the most part I am on my own. No one can really or TRUELY give me the emotional support I need. I need to find that from within.
Not many will understand what it's like to have held my son, and wanted him die, to take away the pain for him and me, but in the same breath wanted so badly to have him forever. Not many will understand that I am not making excuses for my bad behavior, the mistakes I make, not being there to support others, or lack of care for others menial issues, I am not trying to 'milk it', or think I deserve everything on a silver platter because I have a child with special needs.
It's just MY LIFE. And there is not much I can do to change it.
So I am just trying to do the best I can with what I have been given. And give my family what they deserve."
My friend replied, and I hope she doesn't mind i shared;
"Oh wow, I dont know how to respond but i feel i must.....
I totally hear you, I don't "know" because I am not living your life, but I am always listening, I hear you, I care. I am open, Say what needs to be said, I will give my ear and my compassion. ( I hope you understand what i mean by this!)
I don't think anyone can or should judge you for anything, you are on a journey none could imagine. It must be so intense and so full of emotion, I think its a testament to the woman that you are that you continue to feel so much. After so many years of grief, many would numb and move on. But your heart is so full of love, and your life so full of extremes that how else to react than with emotion???
I am so sorry to hear that he is weaker than he was, that must be heartbreaking for your family. I think your grief process sounds like a natural progression...and even though it would be hard, its probably a good evolution. It is a parents natural reaction to want to work really hard to help a child overcome anything, and you "i can fix this " attitude is what we would all want to do. But as you say, its reality that it wont go away, and all you can do is take it as it comes. Grief is always a rollercoaster though!
You are right that you need to rely on your own strength to get through this as people will start to move on and you will be faced wit it every day......but I dont think that means that people will stop caring.
A quote from the Buddha " let yourself be open and life will be easier" is something I always bring to mind - be open with yourself and open to others and more understanding will happen. I dont mean life will be a piece of cake! Or all the troubles will go away! But sharing can make people understand and empathise more and bring up more compassion - and if they react negatively ( like the silver platter comments or excuses for your behaviour comments) they is their issues, and they arent living open heartedly."
its always so nice to get a perspective from someone else. To realise that its not as bad as you think. although some people want me to move on, and cant bare the continuous hard part of my life, there are still many who are a 'shoulder to cry on', when I really need it. Its nice to be reminded that although people go on with their own lives, that they do still care.
Welcome to no-where land
Our journey with our son has been a tough one, I cannot seem to put what we have been through into words without sounding cliché or lessening the impact of what raising a child with disabilities has had on our life. The loneliness and grief. The strength and survival. I believe that without having experienced this for yourself it would be hard for anyone to truly understand.
The best things that come to mind, are not really appropriate to be put into words….but something my mother said to me recently, (and obviously I have heard before) just about covers it…. “It is a cruel world”.
There are though scenario’s around that attempt to describe the journey we face each day.
I don’t know how other mum’s of children with additional needs feel, but I was never all that impressed with “Welcome to Holland” by Emily Perl Kingsley, a short prose piece often given to parents with children with additional needs that describes a scenario of an intended a holiday in Italy but landing in Holland; an attempt to describe the new world we find ourselves in.
But to me its been more than arriving in a different county, to me the first few weeks of having my son and being told his diagnosis was like landing on a different planet.
There is certainly some merit to the scenarios comparison, but when I landed ‘in Holland’ I was not just arriving in a place where I didn’t understand the language, I landed in a place where the first thing that happened to me was that I was mugged of everything, then stabbed several times in the chest. To top that off when I dragged myself injured and bleeding onto the tour bus, I realised that everyone else on the tour continued along on their merry way, oblivious to my misfortunes. We 'checked into our hotel' and my husband and I were told to be prepared for the entire planet to be ripped out from under us, dragging our family and close friends with us; we were told our son may die.
Thankfully his life has not played out according to his original prognosis, but his life has certainly been far from easy or typical.
Through everything though we have watched our son grow(although very slowly) and develop and come to find joy and wonderment in the smallest of small things in his life; things that most parents would miss and never even notice, but we would be dancing on the clouds.
We didn’t chose to be here, we weren’t chosen to be here, we are not hero’s, we are just doing what we have to do, and trying do it in the best way we can…as another of my good friend says “Disability just knocked on my door, not yours”.
Along my journey I have come to know a group of women(online and in real life) who not only shared my journey with children of their own with varying degree’s of additional needs, but whom also shared my passion for Attachment Parenting.
We discussed a scenario that we felt best described the emotional side of our new journey. The part of our journey that involves the loss of friends, and the lack of support from the outside world. The grief, but also then the realisation of the amazing new joys our new community can bring us.
Here is my interpretation;
The Village
Imagine for a moment that you are an integral member of a group of villagers, you play your part well, you do all you can for your village, you keep your head up high, you feel a great sense of pride in your village, the other villagers rely on your for your contribution, and you intern rely on them for there’s. You have been a member of this village for as long as you know, you have of course had some rough times and you don’t always agree with everyone in the village but generally everything is peaceful and you are grateful for what you have and where you are.
It is a nomadic Village and ofcourse each season change you all move on to the next ‘nesting’ grounds. Only this one particular morning you wake to find that somehow you missed the move, you look around you and EVERYTHING is gone, you are lying in the long grass with only what you are wearing and a few small token items(memories of times past). Its hard to know that you were left behind. You wonder why? Was it something you did? Did the village leave you on purpose or did they just forget you even existed? Or maybe for some reason you were just too hard for them? You grieve a lot, you know you will never catch up, not on your own. You feel alone, very alone. For a long time you sit there, feeling sorry for yourself. Wishing things were different, thinking back and wondering what you could have done to make sure you weren’t left behind. How if you had done this or that, things might be different.
After you have been sitting for what seems a very long time you decide to stand up and brush yourself off and see what you can do to make the best of the situation. As you stand up you see over the tall grass you are not the only one who got left behind. There are a couple of other villages who where also left behind. Although they may not have been in your circle in the village you are all immediately drawn to each other. The feeling of isolation is reduced, although the grief and hurt of being left behind is still there, you never wish being left behind on anyone you take solace in the fact that you have some support.
As you get to know the other villagers you realize there was so much more to them than you ever imagined. You all begin to bind and with new found strength, begin a little village of your own. Your new village is also nomadic, and once you have all found the strength you too move through different nesting grounds.
Along your travels you find other villagers left behind from different tribes, and you welcome them into your village, you listen to their stories of grief and abandonment, you share tears and also joys in your new life, you help to lift each other up.
To everyone’s surprise you also come across your old village along the way. This is bitter sweet, you know you don’t really belong there anymore and are happy with your new village, but there is still that ache to be part of it, and you really miss a lot of your friends.
You find some members of your old village have missed you dearly, you know they never wanted you to be left behind in the first place, and they have grieved for you too, they just didn’t know what to do for you.
Some member’s(even the ones you thought were your friends) didn’t even realise you had been left behind.
And some members surprise you; they know they don’t know the half of the pain you experience, but they have empathy and realise how much you need them. They are the ones who see you for who you are in your new village, but who help to keep you connected in someway to your old one, even as you move around in different directions.
As time passes the village grows and strengthens. Of course its not all flowers and sunshine, and different members of the village deal with their grief in their own ways, and some are affected more than others, but in times of adversity the Villages come together and give each other the courage and desire to go on.
**************************
This scenario works in a “get used to it” kind of way.
There is no point in sitting around wishing we weren't in this situation.
Another scenario I heard from a good friend was that there are two islands, the party island and the deserted island….unfortunately having a child with disabilities puts us on the deserted one. We can wave to the people on the party island, and they can wave back to us, but we cant join the party, and they cant really understand what its like for us.
And the thing we know is that no matter how much we try to appreciate where we are, is that no-one is saying "wouldn't it be great to live on that deserted island, in that village, or to visit 'Holland'".
Because aside from this emotional journey many of us deal with so much more; the loss of dreams and hopes for our child/ren, the fear of wether to have more children or not, the constant onslaught of appointments with specialist, therapists, social workers. The unwanted advice and ‘well meaning’ comments from everyone who looks your way, the discrimination and abuse and repulsive things people say. Hospital stays, surgeries and trips to ER, test after test after test. Feeding Buttons, tubes, trachs, stoma’s, central lines. Wheelchairs, afo’s, walking and lifting aids. Adaption’s to car’s and houses to suit specialist equipment needs. Re-moraganing/selling homes to pay for medication, equipment, education assistance, life saving surgery to name a just a few. And who really wants to face all that?
The best things that come to mind, are not really appropriate to be put into words….but something my mother said to me recently, (and obviously I have heard before) just about covers it…. “It is a cruel world”.
There are though scenario’s around that attempt to describe the journey we face each day.
I don’t know how other mum’s of children with additional needs feel, but I was never all that impressed with “Welcome to Holland” by Emily Perl Kingsley, a short prose piece often given to parents with children with additional needs that describes a scenario of an intended a holiday in Italy but landing in Holland; an attempt to describe the new world we find ourselves in.
But to me its been more than arriving in a different county, to me the first few weeks of having my son and being told his diagnosis was like landing on a different planet.
There is certainly some merit to the scenarios comparison, but when I landed ‘in Holland’ I was not just arriving in a place where I didn’t understand the language, I landed in a place where the first thing that happened to me was that I was mugged of everything, then stabbed several times in the chest. To top that off when I dragged myself injured and bleeding onto the tour bus, I realised that everyone else on the tour continued along on their merry way, oblivious to my misfortunes. We 'checked into our hotel' and my husband and I were told to be prepared for the entire planet to be ripped out from under us, dragging our family and close friends with us; we were told our son may die.
Thankfully his life has not played out according to his original prognosis, but his life has certainly been far from easy or typical.
Through everything though we have watched our son grow(although very slowly) and develop and come to find joy and wonderment in the smallest of small things in his life; things that most parents would miss and never even notice, but we would be dancing on the clouds.
We didn’t chose to be here, we weren’t chosen to be here, we are not hero’s, we are just doing what we have to do, and trying do it in the best way we can…as another of my good friend says “Disability just knocked on my door, not yours”.
Along my journey I have come to know a group of women(online and in real life) who not only shared my journey with children of their own with varying degree’s of additional needs, but whom also shared my passion for Attachment Parenting.
We discussed a scenario that we felt best described the emotional side of our new journey. The part of our journey that involves the loss of friends, and the lack of support from the outside world. The grief, but also then the realisation of the amazing new joys our new community can bring us.
Here is my interpretation;
The Village
Imagine for a moment that you are an integral member of a group of villagers, you play your part well, you do all you can for your village, you keep your head up high, you feel a great sense of pride in your village, the other villagers rely on your for your contribution, and you intern rely on them for there’s. You have been a member of this village for as long as you know, you have of course had some rough times and you don’t always agree with everyone in the village but generally everything is peaceful and you are grateful for what you have and where you are.
It is a nomadic Village and ofcourse each season change you all move on to the next ‘nesting’ grounds. Only this one particular morning you wake to find that somehow you missed the move, you look around you and EVERYTHING is gone, you are lying in the long grass with only what you are wearing and a few small token items(memories of times past). Its hard to know that you were left behind. You wonder why? Was it something you did? Did the village leave you on purpose or did they just forget you even existed? Or maybe for some reason you were just too hard for them? You grieve a lot, you know you will never catch up, not on your own. You feel alone, very alone. For a long time you sit there, feeling sorry for yourself. Wishing things were different, thinking back and wondering what you could have done to make sure you weren’t left behind. How if you had done this or that, things might be different.
After you have been sitting for what seems a very long time you decide to stand up and brush yourself off and see what you can do to make the best of the situation. As you stand up you see over the tall grass you are not the only one who got left behind. There are a couple of other villages who where also left behind. Although they may not have been in your circle in the village you are all immediately drawn to each other. The feeling of isolation is reduced, although the grief and hurt of being left behind is still there, you never wish being left behind on anyone you take solace in the fact that you have some support.
As you get to know the other villagers you realize there was so much more to them than you ever imagined. You all begin to bind and with new found strength, begin a little village of your own. Your new village is also nomadic, and once you have all found the strength you too move through different nesting grounds.
Along your travels you find other villagers left behind from different tribes, and you welcome them into your village, you listen to their stories of grief and abandonment, you share tears and also joys in your new life, you help to lift each other up.
To everyone’s surprise you also come across your old village along the way. This is bitter sweet, you know you don’t really belong there anymore and are happy with your new village, but there is still that ache to be part of it, and you really miss a lot of your friends.
You find some members of your old village have missed you dearly, you know they never wanted you to be left behind in the first place, and they have grieved for you too, they just didn’t know what to do for you.
Some member’s(even the ones you thought were your friends) didn’t even realise you had been left behind.
And some members surprise you; they know they don’t know the half of the pain you experience, but they have empathy and realise how much you need them. They are the ones who see you for who you are in your new village, but who help to keep you connected in someway to your old one, even as you move around in different directions.
As time passes the village grows and strengthens. Of course its not all flowers and sunshine, and different members of the village deal with their grief in their own ways, and some are affected more than others, but in times of adversity the Villages come together and give each other the courage and desire to go on.
**************************
This scenario works in a “get used to it” kind of way.
There is no point in sitting around wishing we weren't in this situation.
Another scenario I heard from a good friend was that there are two islands, the party island and the deserted island….unfortunately having a child with disabilities puts us on the deserted one. We can wave to the people on the party island, and they can wave back to us, but we cant join the party, and they cant really understand what its like for us.
And the thing we know is that no matter how much we try to appreciate where we are, is that no-one is saying "wouldn't it be great to live on that deserted island, in that village, or to visit 'Holland'".
Because aside from this emotional journey many of us deal with so much more; the loss of dreams and hopes for our child/ren, the fear of wether to have more children or not, the constant onslaught of appointments with specialist, therapists, social workers. The unwanted advice and ‘well meaning’ comments from everyone who looks your way, the discrimination and abuse and repulsive things people say. Hospital stays, surgeries and trips to ER, test after test after test. Feeding Buttons, tubes, trachs, stoma’s, central lines. Wheelchairs, afo’s, walking and lifting aids. Adaption’s to car’s and houses to suit specialist equipment needs. Re-moraganing/selling homes to pay for medication, equipment, education assistance, life saving surgery to name a just a few. And who really wants to face all that?
My Visions and Goals for my Children
My Vision for Cameron
For Cameron to love and be loved.
To be kept safe from harm.
To be part of the world around him.
To enrich peoples lives and teach people to be open and accepting of others needs.
For Cameron’s Siblings
I want them to enjoy their childhood with Cameron.
To know he is different, but still the same.
To know how to help Cameron and include him in their lives, but also know that he cant always be included but that’s ok.
To know that its ok to get frustrated and upset with/for and about Cameron sometimes, we have these feelings because we love him and care for him and want the best for him.
I want them to be proud to introduce Cameron to their friends and have him around.
When they grow older I want them to look back with fond memories. To remember the good times. To also remember the not-so-good times but in a way that makes them proud of how far our family came, and to admire strength of our family.
My Aims and Goals for all my children
I want my children to grow up knowing they are loved and are important.
Knowing that although I won’t always be happy with what they do, and the decisions they make, I will always love them.
I want them to know how to respect others and treat them with kindness, and empathy.
I want them to know about the world. To know they cant always believe everything they hear or see. To challenge their thinking. To challenge the thinking of others in a positive and open way. To think outside the box.
I want them to gain as much knowledge as they can, and use that knowledge for good.
To create good things, to share good things, to have an understanding of the world around them.
To know that they don’t have to agree with everyone. EVEN their parents.
I want them to fight for what they and others around them believe in, and what is important to them, as long as in doing this they are not hurting or causing grief to others, or breaking laws*. I want them to hold strong to their beliefs but still be open to the beliefs of others.
*I am ok with them questioning laws and fighting against unjust laws, just not breaking them.
I never want them to bully another, or to put another person down, or make harsh judgments on others.
I want them to be able to stick up for those who are bullied. To help those who may be in harms way.
I want them to be happy, but understand that sadness, grief, anger, frustration (etc)all need to be experienced too.
For Cameron to love and be loved.
To be kept safe from harm.
To be part of the world around him.
To enrich peoples lives and teach people to be open and accepting of others needs.
For Cameron’s Siblings
I want them to enjoy their childhood with Cameron.
To know he is different, but still the same.
To know how to help Cameron and include him in their lives, but also know that he cant always be included but that’s ok.
To know that its ok to get frustrated and upset with/for and about Cameron sometimes, we have these feelings because we love him and care for him and want the best for him.
I want them to be proud to introduce Cameron to their friends and have him around.
When they grow older I want them to look back with fond memories. To remember the good times. To also remember the not-so-good times but in a way that makes them proud of how far our family came, and to admire strength of our family.
My Aims and Goals for all my children
I want my children to grow up knowing they are loved and are important.
Knowing that although I won’t always be happy with what they do, and the decisions they make, I will always love them.
I want them to know how to respect others and treat them with kindness, and empathy.
I want them to know about the world. To know they cant always believe everything they hear or see. To challenge their thinking. To challenge the thinking of others in a positive and open way. To think outside the box.
I want them to gain as much knowledge as they can, and use that knowledge for good.
To create good things, to share good things, to have an understanding of the world around them.
To know that they don’t have to agree with everyone. EVEN their parents.
I want them to fight for what they and others around them believe in, and what is important to them, as long as in doing this they are not hurting or causing grief to others, or breaking laws*. I want them to hold strong to their beliefs but still be open to the beliefs of others.
*I am ok with them questioning laws and fighting against unjust laws, just not breaking them.
I never want them to bully another, or to put another person down, or make harsh judgments on others.
I want them to be able to stick up for those who are bullied. To help those who may be in harms way.
I want them to be happy, but understand that sadness, grief, anger, frustration (etc)all need to be experienced too.
Monday, Oct 17 2011 Grief and Impending Loss
1. I have been reading lots of other blog's today from other parents of children with special needs. There seems to be a bit of recurring theme at the moment about thoughts and grief and fear of our children's mortality, and memories of the day we were told our child would not live long, who not live past two, or four, or eight, or that they shouldn't have even lived to birth so loss at any time should be expected.
As most of my readers, family and friends know we were told when Cameron was a new born that he may not live to two years old. We were told by our dr, that he hoped that in many years time we can come back and show him he was wrong...then he handed us a medical document(the only thing he could find about the syndrome they thought he had) that was hard to understand and fathom, about boys who have the same syndrome, none of which had lived to be two, and all of which were very sick their entire life span.
For two years our family and friends feared for that awful day, we grieved for the loss of a future we had so dreamed of for our little boy.
Thank-fully for now the reality of this diagnosis is so much different. After two years we were given a different outcome for Cameron and his syndrome. A "new" diagnosis, the Syndrome was the same, but the prognosis was different. It had been discovered that there were more boys with the same syndrome, and although very sadly many of the boys had passed at very young ages, therw was still hope in discovering boys as old as mid 20's. I think now, two years on again, there are boys even older..into their 30's.
Sadly there is still a shadow sitting over us, and we do still revert to living in fear for our son's life, but for the most part, now, knowing how strong and healthy he has been the last four years we hold onto hope that he has many more years to share with us.
Like the mother in this blog: around Cameron's birthday I start to grieve a lot. As well as celebrate the coming of his birthday and another year spent with him, there is also the memories of his birth, the trauma of what we were told, the moment our lives changed forever, in a way we could never have expected or been prepared for.
I grieve and think about how he is another year older, but is still only learning the things a child under one can already do.
I struggle at other children's birthday parties(there seems to be a million of them around his birthday) as I watch them celebrate in pure happiness for such a special day. I cry inside as I watch proud parents faces as they watch their healthy happy children cut cakes, blow out candles, open presents, and play party games with their friends. When I know that on my son's birthday he wont understand, he wont celebrate, he will wonder why his house is full of noisy people, and will probably wish they would all just go home, and he wont understand that everyone is singing "Happy Birthday" just for HIM. Although he will be very happy abut getting to eat cake! :)
2. I also read this article
As I cried reading this blog I reflected back on the grief of the first years, and the way the future we had 'planned' and hoped for Cameron was ripped out from under him. The grief of not knowing if he even had a future.
Although since having Sebastian some of this grief has left, and I am able to celebrate in the joys of having a child do regular child things, is is still not the same. Sebastian's childhood also wont be the childhood we had hoped for when we decided to have children, and even though we knew that when I fell pregnant with him, it doesn't take away our guilt and fear for his childhood as well.
Although I found siblings of children with special needs to have an amazing empathy, understanding and acceptance of those around them who are different, and a kind of gentleness and appreciation for life, at the same time their lives have not been easy.
Things that worry me for Sebastian:
That he misses out. That he will miss out in the future.
That I cant always give equal attention
That he spends too much time having to go to appointments and hospital visits, and not enough time at the park and the beach.
That he will be teased about Cameron. That he will hear people say mean things about his brother.
That I am too sad, too angry, too tired to be a good mum for him.
That I won't always be there when he needs me.
That one day his brother will die. That if this happens he will have grief and loss. That I might be so grieved by the loss of Cameron that I will forget about his grief for the loss of his brother.
As most of my readers, family and friends know we were told when Cameron was a new born that he may not live to two years old. We were told by our dr, that he hoped that in many years time we can come back and show him he was wrong...then he handed us a medical document(the only thing he could find about the syndrome they thought he had) that was hard to understand and fathom, about boys who have the same syndrome, none of which had lived to be two, and all of which were very sick their entire life span.
For two years our family and friends feared for that awful day, we grieved for the loss of a future we had so dreamed of for our little boy.
Thank-fully for now the reality of this diagnosis is so much different. After two years we were given a different outcome for Cameron and his syndrome. A "new" diagnosis, the Syndrome was the same, but the prognosis was different. It had been discovered that there were more boys with the same syndrome, and although very sadly many of the boys had passed at very young ages, therw was still hope in discovering boys as old as mid 20's. I think now, two years on again, there are boys even older..into their 30's.
Sadly there is still a shadow sitting over us, and we do still revert to living in fear for our son's life, but for the most part, now, knowing how strong and healthy he has been the last four years we hold onto hope that he has many more years to share with us.
Like the mother in this blog: around Cameron's birthday I start to grieve a lot. As well as celebrate the coming of his birthday and another year spent with him, there is also the memories of his birth, the trauma of what we were told, the moment our lives changed forever, in a way we could never have expected or been prepared for.
I grieve and think about how he is another year older, but is still only learning the things a child under one can already do.
I struggle at other children's birthday parties(there seems to be a million of them around his birthday) as I watch them celebrate in pure happiness for such a special day. I cry inside as I watch proud parents faces as they watch their healthy happy children cut cakes, blow out candles, open presents, and play party games with their friends. When I know that on my son's birthday he wont understand, he wont celebrate, he will wonder why his house is full of noisy people, and will probably wish they would all just go home, and he wont understand that everyone is singing "Happy Birthday" just for HIM. Although he will be very happy abut getting to eat cake! :)
2. I also read this article
As I cried reading this blog I reflected back on the grief of the first years, and the way the future we had 'planned' and hoped for Cameron was ripped out from under him. The grief of not knowing if he even had a future.
Although since having Sebastian some of this grief has left, and I am able to celebrate in the joys of having a child do regular child things, is is still not the same. Sebastian's childhood also wont be the childhood we had hoped for when we decided to have children, and even though we knew that when I fell pregnant with him, it doesn't take away our guilt and fear for his childhood as well.
Although I found siblings of children with special needs to have an amazing empathy, understanding and acceptance of those around them who are different, and a kind of gentleness and appreciation for life, at the same time their lives have not been easy.
Things that worry me for Sebastian:
That he misses out. That he will miss out in the future.
That I cant always give equal attention
That he spends too much time having to go to appointments and hospital visits, and not enough time at the park and the beach.
That he will be teased about Cameron. That he will hear people say mean things about his brother.
That I am too sad, too angry, too tired to be a good mum for him.
That I won't always be there when he needs me.
That one day his brother will die. That if this happens he will have grief and loss. That I might be so grieved by the loss of Cameron that I will forget about his grief for the loss of his brother.
1. I have been reading lots of other blog's today from other parents of children with special needs. There seems to be a bit of recurring theme at the moment about thoughts and grief and fear of our children's mortality, and memories of the day we were told our child would not live long, who not live past two, or four, or eight, or that they shouldn't have even lived to birth so loss at any time should be expected.
As most of my readers, family and friends know we were told when Cameron was a new born that he may not live to two years old. We were told by our dr, that he hoped that in many years time we can come back and show him he was wrong...then he handed us a medical document(the only thing he could find about the syndrome they thought he had) that was hard to understand and fathom, about boys who have the same syndrome, none of which had lived to be two, and all of which were very sick their entire life span.
For two years our family and friends feared for that awful day, we grieved for the loss of a future we had so dreamed of for our little boy.
Thank-fully for now the reality of this diagnosis is so much different. After two years we were given a different outcome for Cameron and his syndrome. A "new" diagnosis, the Syndrome was the same, but the prognosis was different. It had been discovered that there were more boys with the same syndrome, and although very sadly many of the boys had passed at very young ages, therw was still hope in discovering boys as old as mid 20's. I think now, two years on again, there are boys even older..into their 30's.
Sadly there is still a shadow sitting over us, and we do still revert to living in fear for our son's life, but for the most part, now, knowing how strong and healthy he has been the last four years we hold onto hope that he has many more years to share with us.
Like the mother in this blog: around Cameron's birthday I start to grieve a lot. As well as celebrate the coming of his birthday and another year spent with him, there is also the memories of his birth, the trauma of what we were told, the moment our lives changed forever, in a way we could never have expected or been prepared for.
I grieve and think about how he is another year older, but is still only learning the things a child under one can already do.
I struggle at other children's birthday parties(there seems to be a million of them around his birthday) as I watch them celebrate in pure happiness for such a special day. I cry inside as I watch proud parents faces as they watch their healthy happy children cut cakes, blow out candles, open presents, and play party games with their friends. When I know that on my son's birthday he wont understand, he wont celebrate, he will wonder why his house is full of noisy people, and will probably wish they would all just go home, and he wont understand that everyone is singing "Happy Birthday" just for HIM. Although he will be very happy abut getting to eat cake! :)
2. I also read this article
As I cried reading this blog I reflected back on the grief of the first years, and the way the future we had 'planned' and hoped for Cameron was ripped out from under him. The grief of not knowing if he even had a future.
Although since having Sebastian some of this grief has left, and I am able to celebrate in the joys of having a child do regular child things, is is still not the same. Sebastian's childhood also wont be the childhood we had hoped for when we decided to have children, and even though we knew that when I fell pregnant with him, it doesn't take away our guilt and fear for his childhood as well.
Although I found siblings of children with special needs to have an amazing empathy, understanding and acceptance of those around them who are different, and a kind of gentleness and appreciation for life, at the same time their lives have not been easy.
Things that worry me for Sebastian:
That he misses out. That he will miss out in the future.
That I cant always give equal attention
That he spends too much time having to go to appointments and hospital visits, and not enough time at the park and the beach.
That he will be teased about Cameron. That he will hear people say mean things about his brother.
That I am too sad, too angry, too tired to be a good mum for him.
That I won't always be there when he needs me.
That one day his brother will die. That if this happens he will have grief and loss. That I might be so grieved by the loss of Cameron that I will forget about his grief for the loss of his brother.
As most of my readers, family and friends know we were told when Cameron was a new born that he may not live to two years old. We were told by our dr, that he hoped that in many years time we can come back and show him he was wrong...then he handed us a medical document(the only thing he could find about the syndrome they thought he had) that was hard to understand and fathom, about boys who have the same syndrome, none of which had lived to be two, and all of which were very sick their entire life span.
For two years our family and friends feared for that awful day, we grieved for the loss of a future we had so dreamed of for our little boy.
Thank-fully for now the reality of this diagnosis is so much different. After two years we were given a different outcome for Cameron and his syndrome. A "new" diagnosis, the Syndrome was the same, but the prognosis was different. It had been discovered that there were more boys with the same syndrome, and although very sadly many of the boys had passed at very young ages, therw was still hope in discovering boys as old as mid 20's. I think now, two years on again, there are boys even older..into their 30's.
Sadly there is still a shadow sitting over us, and we do still revert to living in fear for our son's life, but for the most part, now, knowing how strong and healthy he has been the last four years we hold onto hope that he has many more years to share with us.
Like the mother in this blog: around Cameron's birthday I start to grieve a lot. As well as celebrate the coming of his birthday and another year spent with him, there is also the memories of his birth, the trauma of what we were told, the moment our lives changed forever, in a way we could never have expected or been prepared for.
I grieve and think about how he is another year older, but is still only learning the things a child under one can already do.
I struggle at other children's birthday parties(there seems to be a million of them around his birthday) as I watch them celebrate in pure happiness for such a special day. I cry inside as I watch proud parents faces as they watch their healthy happy children cut cakes, blow out candles, open presents, and play party games with their friends. When I know that on my son's birthday he wont understand, he wont celebrate, he will wonder why his house is full of noisy people, and will probably wish they would all just go home, and he wont understand that everyone is singing "Happy Birthday" just for HIM. Although he will be very happy abut getting to eat cake! :)
2. I also read this article
As I cried reading this blog I reflected back on the grief of the first years, and the way the future we had 'planned' and hoped for Cameron was ripped out from under him. The grief of not knowing if he even had a future.
Although since having Sebastian some of this grief has left, and I am able to celebrate in the joys of having a child do regular child things, is is still not the same. Sebastian's childhood also wont be the childhood we had hoped for when we decided to have children, and even though we knew that when I fell pregnant with him, it doesn't take away our guilt and fear for his childhood as well.
Although I found siblings of children with special needs to have an amazing empathy, understanding and acceptance of those around them who are different, and a kind of gentleness and appreciation for life, at the same time their lives have not been easy.
Things that worry me for Sebastian:
That he misses out. That he will miss out in the future.
That I cant always give equal attention
That he spends too much time having to go to appointments and hospital visits, and not enough time at the park and the beach.
That he will be teased about Cameron. That he will hear people say mean things about his brother.
That I am too sad, too angry, too tired to be a good mum for him.
That I won't always be there when he needs me.
That one day his brother will die. That if this happens he will have grief and loss. That I might be so grieved by the loss of Cameron that I will forget about his grief for the loss of his brother.
New Blog!
So i have decided that I will also create this blog, to store some of my other blog entries from "2 things I did 2day" and "2 things 2 boys did 2day", so when new friends or followers want to read the most important entries they are all right there!
Thanks everyone for following my blogs xxoo
Thanks everyone for following my blogs xxoo
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