I have, through no choice of my own, been catapult into the world of autism. I do not consider myself an expert in autism. I do not consider myself well versed in autism. I am fairly adequate in the specific ways autism affects Nicholas. And I am fairly aware of what autism may look like and the kinds of treatments out there. I also know about the many studies being published daily, it seems, showing where autism research is focused since they inevitably end up on my newsfeeds either shared by pages I follow, friends, or sponsored stories.
And they make me mad.
The vast majority of these studies go something like this: "<Insert some common variable> in pregnant women has been linked to autism."
Based on what is known of famous historical figures, it has been determined that at least some of them were probably on the spectrum. Of course we can never know for sure, a diagnosis for autism cannot be made out of purely anecdotal evidence, but there is a pretty good level of certainty based on what is known. This suggests that there were likely more individuals with autism during these periods of time whose lives were not well documented. Many of them could have easily died as young children, a lack of awareness of danger is a common trait of autism. It seems that autism has been around for a very long time and could just be part of the human species like left handedness.
Tuesday, May 24, 2016
Friday, April 22, 2016
Demons Of The Past
Sometimes life happens. I work on an entry and life gets in the way and it doesn’t get done. Then another idea pops up and I go with that one. And that one doesn’t get done for the same reason. Sometimes there are two or three unpublished entries between published ones. Right now I several I would like to finish and probably just as many that should just be deleted because they’re old and probably not relevant anymore. I am usually not able to re-visit these entries because life will throw at me more interesting, relevant ones. But life is unpredictable and I felt that this one, started over a year ago, needed to be shared today.
The day seems to be a typical one, just another day in a string of days, walking down a street you walk down daily. Your body starts to tense and you attempt a deep breath but your chest feels tight. You attempt another breath and you are suddenly aware of the sirens. The sound is far, so far that none of the cars in the street are stopping or making an effort to pull over. So far that no one around you seems to even hear it.
***
The day seems to be a typical one, just another day in a string of days, walking down a street you walk down daily. Your body starts to tense and you attempt a deep breath but your chest feels tight. You attempt another breath and you are suddenly aware of the sirens. The sound is far, so far that none of the cars in the street are stopping or making an effort to pull over. So far that no one around you seems to even hear it.
Friday, March 11, 2016
The Right To Grieve
When I was young there was a special person in my life. This person was not in my daily life but I did hear from them and see them periodically. It was not unusual to go a couple of months without a word.
One day my brain did one of those fast leaps from subject to subject and suddenly I realised I had not heard or seen this person in a very long time. I went to ask my mother about this person and without even looking at me she tells me that this person died over a year ago. I was shocked. I asked her why she hadn't told me and she said she didn't think I would be able to handle it.
I was 13 years old when this happened.
Nicholas had been fortunate enough to not have to deal with losing a family member. However, several months ago he realised my grandmother died before he was born and it really upset him. From time to time he brings it up again and it upsets him. I hug him and kiss him and soon he's ok again.
Last week things changed. Last week he experienced his first loss.
During Nicholas' first year of life we lived with my sister. When he was about 6 months old (give or take) my sister took him with her (an errand or something). When they returned I heard the car pull up to the driveway, heard her turn off the car and heard her open and close her door. I then heard her open a second door and I knew she was taking Nicholas out in his car seat. Then I heard her shouting. I rushed to the door and see her holding the carseat up and a little white dog on her hind legs batting up at it. Every movement my sister made the dog followed. She started coming towards the front door and said that the dog came out of nowhere.
It was hot, it had been a hot week, and we knew this dog had to be thirsty so we gave her some water. She was friendly so we figured she was lost but we had never seen her before. She was the ugliest little dog I had ever seen. It looked like she had gotten an awful haircut making her look skinny and weird. Since she didn't have a collar but could tell it was a girl we started calling her Lady. After several days of walking her around the neighbourhood to see if someone recognised her they decided to take her to the vet and see if she was microchipped. They found out she was not microchipped and that she was a poodle with a bad haircut. So they decided to keep her.
She immediately took to Nicholas. My sister said that when she put the carseat on the ground to close the door Lady came running towards him. She was always near him and when he cried she would cry. This would become Nicholas' dog.
We moved out of my sister's house when Nicholas was 2 years old but he continued to visit on a regular basis. When I started working full time he was there daily. Lady's small size made her perfect for him.
On Thursday of last week Lady's time on Earth ended. She was old and her body was not holding up anymore. I had to make the decision of how to tell Nicholas this news. To complicate things not only had he told Lady to get better because he didn't want her to die that morning before going to school, his aunt was leaving on vacation that evening. He would not be back at that house for a whole week.
I have made a vow not to lie to him and this was no exception, I knew I had to tell him. But Thursday evening after so much change didn't seem wise. I had no idea how he would take it, how hard it would be on him. I didn't want him to have a bad night and have him have a bad day at school on Friday. I made the decision to wait until Friday evening when I got home from work. This way I would have time to do some research as to how best to handle the situation and if he took it extra hard then we could stay up cuddling without worry. And then have two whole days to be there, at will, if he needed extra hugs.
Everything I read confirmed my decision. At his age and understanding level he needs to be told the truth sooner rather than later and that it had to be an honest discussion not sugar coated with deceiving language or well intentioned lies. So on Friday, after I had been home for a little while, I sat down with him to talk.
Nicholas was very upset and it was the hardest half hour I have ever experienced. He was completely devastated. I can honestly say that watching your child in such pain is worse than experiencing it yourself.
"I loved her so much."
"This makes me feel very sad."
"I didn't want her to die."
"I don't like to feel like this."
"I want her to come back."
"I will miss her so much."
"All I have is memories."
"She was a special dog."
It was heart breaking for me to see him in such pain and not be able to do anything but hold him tight, knowing that there was nothing I could tell him that would make it all better, knowing that there was nothing I could do that would fix it.
But slowly he stopped talking. Then his crying calmed. I cleaned his face and he was sad but ok. I knew it wasn't the end of it, that he would continue to have episodes of this kind of sadness off and on for a while. But I didn't know for how long, and that was unsettling. We gave him a treat (ice cream makes everything at least a little better) and made sure he knew it was ok to feel sad and angry and it was ok to come get hugs when he needed it.
It's hard. And I know many parents have had to go through this with their children. I know every child is different and reacts differently to the death of a loved one. I know some relationships are harder than others, losing a parent is more difficult than losing a pet. And I know that no matter how much a parent prepares or tries, that helping a child grieve is heartbreaking and difficult. Especially when the parent is grieving too. But it must be done.
Children have the right to grieve.
And I believe that if a child understands the concept of death, if they understand that it means the person or animal is no longer with us and will not be with us in the physical form again, then they have the right to know when someone they love has died. They have the right to go through the grieving process at the time of death and not be kept in the dark. Just because it is difficult and painful does not mean the adults have the right to make things easier on themselves with lies. It is selfish and irresponsible.
It hasn't been easy and I've begun to second guess my approach, my choice in words, if maybe I should have held on to him a little longer. Or maybe cleaned his face sooner. But I know these details will fade and he will ultimately remember that I told him his beloved pet had died and that I held him close and let him cry. I take comfort that he will not have to one day realise that she did not run away or get lost and then wonder what else I may have lied to him about.
I was lied to, I always wonder.
Sweet Lady, you will be missed.
One day my brain did one of those fast leaps from subject to subject and suddenly I realised I had not heard or seen this person in a very long time. I went to ask my mother about this person and without even looking at me she tells me that this person died over a year ago. I was shocked. I asked her why she hadn't told me and she said she didn't think I would be able to handle it.
I was 13 years old when this happened.
Nicholas had been fortunate enough to not have to deal with losing a family member. However, several months ago he realised my grandmother died before he was born and it really upset him. From time to time he brings it up again and it upsets him. I hug him and kiss him and soon he's ok again.
Last week things changed. Last week he experienced his first loss.
 |
| After a good grooming. |
She immediately took to Nicholas. My sister said that when she put the carseat on the ground to close the door Lady came running towards him. She was always near him and when he cried she would cry. This would become Nicholas' dog.We moved out of my sister's house when Nicholas was 2 years old but he continued to visit on a regular basis. When I started working full time he was there daily. Lady's small size made her perfect for him.
On Thursday of last week Lady's time on Earth ended. She was old and her body was not holding up anymore. I had to make the decision of how to tell Nicholas this news. To complicate things not only had he told Lady to get better because he didn't want her to die that morning before going to school, his aunt was leaving on vacation that evening. He would not be back at that house for a whole week.
I have made a vow not to lie to him and this was no exception, I knew I had to tell him. But Thursday evening after so much change didn't seem wise. I had no idea how he would take it, how hard it would be on him. I didn't want him to have a bad night and have him have a bad day at school on Friday. I made the decision to wait until Friday evening when I got home from work. This way I would have time to do some research as to how best to handle the situation and if he took it extra hard then we could stay up cuddling without worry. And then have two whole days to be there, at will, if he needed extra hugs. 
Everything I read confirmed my decision. At his age and understanding level he needs to be told the truth sooner rather than later and that it had to be an honest discussion not sugar coated with deceiving language or well intentioned lies. So on Friday, after I had been home for a little while, I sat down with him to talk.Nicholas was very upset and it was the hardest half hour I have ever experienced. He was completely devastated. I can honestly say that watching your child in such pain is worse than experiencing it yourself.
"I loved her so much."
"This makes me feel very sad."
"I didn't want her to die."
"I don't like to feel like this."
"I want her to come back."
"I will miss her so much."
"All I have is memories."
"She was a special dog."
It was heart breaking for me to see him in such pain and not be able to do anything but hold him tight, knowing that there was nothing I could tell him that would make it all better, knowing that there was nothing I could do that would fix it.
But slowly he stopped talking. Then his crying calmed. I cleaned his face and he was sad but ok. I knew it wasn't the end of it, that he would continue to have episodes of this kind of sadness off and on for a while. But I didn't know for how long, and that was unsettling. We gave him a treat (ice cream makes everything at least a little better) and made sure he knew it was ok to feel sad and angry and it was ok to come get hugs when he needed it.
It's hard. And I know many parents have had to go through this with their children. I know every child is different and reacts differently to the death of a loved one. I know some relationships are harder than others, losing a parent is more difficult than losing a pet. And I know that no matter how much a parent prepares or tries, that helping a child grieve is heartbreaking and difficult. Especially when the parent is grieving too. But it must be done.
Children have the right to grieve.
And I believe that if a child understands the concept of death, if they understand that it means the person or animal is no longer with us and will not be with us in the physical form again, then they have the right to know when someone they love has died. They have the right to go through the grieving process at the time of death and not be kept in the dark. Just because it is difficult and painful does not mean the adults have the right to make things easier on themselves with lies. It is selfish and irresponsible.
It hasn't been easy and I've begun to second guess my approach, my choice in words, if maybe I should have held on to him a little longer. Or maybe cleaned his face sooner. But I know these details will fade and he will ultimately remember that I told him his beloved pet had died and that I held him close and let him cry. I take comfort that he will not have to one day realise that she did not run away or get lost and then wonder what else I may have lied to him about.
I was lied to, I always wonder.
Sweet Lady, you will be missed.
Friday, February 26, 2016
Dear Niece: Keeping Memories, Pt. 2
Dear Niece,
Can you believe he is 3 months old?? I can, but I remember when Nicholas turned 3 months and it quite literally felt like we had just left the hospital a week or so ago.
By now little Ginger Baby has learned to do a lot of things and has grown quite a bit. This growing leads to a little, tiny, problem: outgrown clothes.
Friday, February 12, 2016
A Good Weekend!
We had an exceptionally good weekend. "We" meaning Nicholas. There were no tantrums, no major arguing, no big attitude, etc. This is rare and made me happy.
Last weekend came as a much welcomed surprise since he had an especially rough week. His outbursts and lack of self control had been apparent both at home and at school all last week so I was prepared for a long weekend of the same. But when the weekend was over and I realized that we had the opposite of the kind of weekend I was anticipating I began thinking about what it takes to have a "good" weekend. And I think it is important to share this because most people don’t understand Nicholas’, and therefore our, unique struggle, especially since, at first glance, Nicholas appears to be a typical child. When he starts to experience his issues in public strangers think he is just misbehaving and familiar people (family) tend to forget the complexity of the situation.
Last weekend came as a much welcomed surprise since he had an especially rough week. His outbursts and lack of self control had been apparent both at home and at school all last week so I was prepared for a long weekend of the same. But when the weekend was over and I realized that we had the opposite of the kind of weekend I was anticipating I began thinking about what it takes to have a "good" weekend. And I think it is important to share this because most people don’t understand Nicholas’, and therefore our, unique struggle, especially since, at first glance, Nicholas appears to be a typical child. When he starts to experience his issues in public strangers think he is just misbehaving and familiar people (family) tend to forget the complexity of the situation.
Friday, January 8, 2016
Dear Niece: Keeping Memories, Pt. 1
Dear Niece,
Your baby has been here for over a month now. He has lived through holidays and family and you've already got plenty of stories to tell. He's reached milestones and you've got many pictures. You are living in the now and enjoying your baby. It is a wonderful time!
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