Mrs. Sally Noname (as referred to in my earlier post) is a real person(s). She is my nosey neighbor, my generous friend, or the lady in the grocery store that ticks me off so much I need to rant about her. Today she is my friend, and I was going to send her this in an email, but I feel it may be better served as a eye opener for anyone who is willing to read it. Never judge another mother.
Dear Sally,
It was great seeing you today, I am amazed that you and Sally Jr. could meet us at the park last minute. Wish we could have talked a bit more, but play dates with 2 year old are more like an aerobic class, right?
As you saw, Daniel took a turn for the worst toward the end. He lost control, and I lost my patience. When my son has 'bad days' it is very hard for both of us. I am getting to the point where I can tell when he wakes up if he is 'here' today or not. I knew today was going to be a struggle and tried to intervene by getting out to the park. Thinking some physical activity would change the pace of the downfall that started this morning. I am admitting that I was wrong.
I could see the change is Daniels eyes when he and Sally Jr. were running up and down the hill. One moment he was with us, and then he was gone. Please understand that without words, and not being able to communicate, when Daniel 'goes away' I fear he is all alone in a very sad, dark place in his head.
You were wonderful when he had his melt down.. Offering help, and asking what I needed from you. Not telling me what I was doing wrong, or what you would do differently. I appreciate that. I also want you to know that as you walked away, and I yelled at the top of my lungs at Daniel- it was out of fear. My worst fear in times like that is him banging his head on the concrete. Wearing Nora, and fighting with him, it was very hard to control that. I want so badly to do it all right, but I know it is just not realistic. Please know I apologised to Daniel when we got home for yelling.
I am getting the hang of this, through trial and error, but it is great to know I have friends who support (not judge) me along the way.
Love,
Ashley
Wednesday, July 31, 2013
Tuesday, July 30, 2013
Normal Is Another Word For Average
I am challenged with the word 'Normal'. Before I actually get into my point and thoughts on how this related to my journey with Daniel lets take a moment to actually look at the word.
When it comes to describing children, normal is a huge range. They take a bazillion children, find the average number that hit milestones, at what age, and boom- Normal. At this rate 'normal' should be a synonym for 'average', right? Let talk about the kids who hit above the normal mark. Are they exceptional? Will they always be above that normal range? Do we as parents get a moment to relax, breath and brag because we are 'doing it right'? This leads us to the children who fall in just under. Where does that leave them? Where does that leave their parents? Worried, stressed, and pushing their kid? Or defeated, frustrated and disappointed? It really makes you wonder what life was like before we had this 'normal/average' for parents. Expectations had to be different, if only because they didn't know any better. And I say 'didn't know any better' in a very positive way.
Daniel always hit his milestones early. Teeth- early. Rolling over- early. Walking- early. I could go on and on, and trust me I did! My baby was exceptional! We were way over that 'normal' range and proud to share with anyone who would listen. I don't know at what point I stopped looking at the Normal Curve that we as parents go by. Maybe once he started walking, I always felt like that was the last big milestone, and everything would just fall into place after.
Now I look at Daniels actions and wonder, is that normal? Or is that because he is autistic? Don't all two year old children throw tantrums? I know they do, but is it the same? I assume it is easier for Sally Noname and her two year old. Her daughter fits in the normal spectrum. Sure little Sally Jr. throws a rant, but is it every single time the door is opened? Is it to the same extent as with Daniel? In the moments, the many, many moments I am dragging him away from our kitchen door I think it is impossible that anyone else would have to do this with their child. Other parents don't come and go through the kitchen window to simply avoid meltdown number 4 when it is only 10 am. Then again, I could be wrong, it could all be very normal. I mean average. No, wait, normal?
So this is what happens in my brain during the day now. Watching Daniel and wondering if what he is doing is normal for his age. Why? Normal or not, he is going to do what he does. If my sons time at breakfast fits into some neat little box that I can label 'Average Behavior' how does that change our day? Simply put- it doesn't. I don't want to be misunderstood here, it's not a comparison of Daniel and Sally Jr. but just a basic understanding of what this average is. For some reason it is important for me to know what is autistic, and what is just the terrible twos. I want to know what he will grow out of, and what I need to adjust in my life to accept. Only time will tell me that, not some government approved study that set the standard for normal.
Besides, don't we all want to strive for above average? And if not us, then at least our children?
When it comes to describing children, normal is a huge range. They take a bazillion children, find the average number that hit milestones, at what age, and boom- Normal. At this rate 'normal' should be a synonym for 'average', right? Let talk about the kids who hit above the normal mark. Are they exceptional? Will they always be above that normal range? Do we as parents get a moment to relax, breath and brag because we are 'doing it right'? This leads us to the children who fall in just under. Where does that leave them? Where does that leave their parents? Worried, stressed, and pushing their kid? Or defeated, frustrated and disappointed? It really makes you wonder what life was like before we had this 'normal/average' for parents. Expectations had to be different, if only because they didn't know any better. And I say 'didn't know any better' in a very positive way.
Daniel always hit his milestones early. Teeth- early. Rolling over- early. Walking- early. I could go on and on, and trust me I did! My baby was exceptional! We were way over that 'normal' range and proud to share with anyone who would listen. I don't know at what point I stopped looking at the Normal Curve that we as parents go by. Maybe once he started walking, I always felt like that was the last big milestone, and everything would just fall into place after.
Now I look at Daniels actions and wonder, is that normal? Or is that because he is autistic? Don't all two year old children throw tantrums? I know they do, but is it the same? I assume it is easier for Sally Noname and her two year old. Her daughter fits in the normal spectrum. Sure little Sally Jr. throws a rant, but is it every single time the door is opened? Is it to the same extent as with Daniel? In the moments, the many, many moments I am dragging him away from our kitchen door I think it is impossible that anyone else would have to do this with their child. Other parents don't come and go through the kitchen window to simply avoid meltdown number 4 when it is only 10 am. Then again, I could be wrong, it could all be very normal. I mean average. No, wait, normal?
So this is what happens in my brain during the day now. Watching Daniel and wondering if what he is doing is normal for his age. Why? Normal or not, he is going to do what he does. If my sons time at breakfast fits into some neat little box that I can label 'Average Behavior' how does that change our day? Simply put- it doesn't. I don't want to be misunderstood here, it's not a comparison of Daniel and Sally Jr. but just a basic understanding of what this average is. For some reason it is important for me to know what is autistic, and what is just the terrible twos. I want to know what he will grow out of, and what I need to adjust in my life to accept. Only time will tell me that, not some government approved study that set the standard for normal.
Besides, don't we all want to strive for above average? And if not us, then at least our children?
Thursday, July 25, 2013
Rainbows in My Paperwork
I am signing my name to so many forms, I am starting to wish I had a fancier signature. One with a few more swirls, or maybe I will start using colored ink.
I didn't think about this part of it all. The stacks and stacks of paperwork that are required to even make an appointment. I am usually good at this part, being Mrs. Organized. I stop at the office or print out the paperwork so I can fill it out at home at my leisure. This is almost always a guarantee that there will be some kind of food or drink on these forms.
Most of it is fine.... Name, date of birth, place of birth, sex, phone number, insurance info... Yeah yeah yeah, I have all that stuff covered just fine- until I start to put my info and not Daniels... Crap. Yay for that colored ink, not only do I look like an idiot, but I look like an idiot in orange...
Moving on. Medical history used to be hard but after 3 months I can breeze right throught that too... Names of all the crap Dan has had, the dates and the long foreign looking names of the medications. Being a 'naturopathic baby' the herbs alone sound like some kind of weird soup when I re-read it, not to mention the crazy names of Homeopathic remedies... Nux Vomica? Whada who? Like I said after a while its nothing- like learning to spell Mississippi as a kid. Now my Mississippi is a specific medical terminology. This part has moved up from pencil to ink.
Insurance info- The paper work for this part is easy. Copy said information on to the form... The hard part is knowing the exact coverage. I want Daniel to get all the help he can, that means seeing a lot of different doctors and therapists. To find ones that he fits well with takes time, and uses some of his valuable 'Allowed Visits'....And that my friends is a whole other post entirely... As fas as this one is concerned... the actual paperwork part goes smoothly. I can happily fill this form out in purple if I so like..
On to the final part of the paperwork. What we are dealing with, with Daniel is developmental, and so his paperwork reflects this. I HATE these sections. I swear the questions are designed to tie my brain in knots. You read them and they look easy enough, until you have to put your answer into words.
What do you like best about your child?
Pfft, no problem. Let me whip out my green pen and I will put how sweet he is... wait... Daniel is sweet, but I can do better then that. Most of this paperwork is about what's 'wrong' with him, I really want to make this answer count! Ok, he's got a great smile...No, every kid has that. Come on, is this question really this hard? Yes! It was for me anyway. The pressure to decide what I liked 'best' all of a sudden seems so important. Maybe I will come back to this one.
What would you like to see changed in your child?
I immedately want to put NOTHING because I am a wonderful mom, and can accept and love my child as he is. This however is not true and I realize we do need help from these professionals. So I start to write the thing that I hate most, Daniel banging his head on the floor. As soon as I see it, I scribble it out. Perhaps we shouldn't start out with his worst symptom. Too dramatic. I don't want to put something too subtle like Better table manners because at this point food all over the place is a walk in the park. Hmm... Looks like I will come back to this one too. I put my hot pink pen down.
How do you discipline your child?
Uhhhh. Great, now they are going to know the truth about me. (insert the tiny bit of doubt that this is all my fault) I think about being completely honest. I try to be consistent, give warnings, and move on to timeout, but lately I fly off the handle and overreact. I have no patience, and fight with Daniel daily about not drinking the entire half gallon of almond milk. I must admit my pride gets in the way here. Ok, so lets tone it down a little. I honestly have no idea how to discipline Daniel now. What does he understaind, what does he simply not get that I view as defiance? Lately because my heart goes out to him I let way more than I should slide. While this is very true, I sound like a push over. Frustrated I grab the black pen and simply write Timeout. Let them read between the lines.
The next three, yes count them three pages continue this way. Me over thinking each question, crossing out and rewriting. By the time I get to the end, only half the questions are answered and it looks like a second grader tried to color a rainbow on it. Flipping back through the pages it kind of brightens up the sad thought that I have to actually sit and fill out this kind of paperwork at all.
I didn't think about this part of it all. The stacks and stacks of paperwork that are required to even make an appointment. I am usually good at this part, being Mrs. Organized. I stop at the office or print out the paperwork so I can fill it out at home at my leisure. This is almost always a guarantee that there will be some kind of food or drink on these forms.
Most of it is fine.... Name, date of birth, place of birth, sex, phone number, insurance info... Yeah yeah yeah, I have all that stuff covered just fine- until I start to put my info and not Daniels... Crap. Yay for that colored ink, not only do I look like an idiot, but I look like an idiot in orange...
Moving on. Medical history used to be hard but after 3 months I can breeze right throught that too... Names of all the crap Dan has had, the dates and the long foreign looking names of the medications. Being a 'naturopathic baby' the herbs alone sound like some kind of weird soup when I re-read it, not to mention the crazy names of Homeopathic remedies... Nux Vomica? Whada who? Like I said after a while its nothing- like learning to spell Mississippi as a kid. Now my Mississippi is a specific medical terminology. This part has moved up from pencil to ink.
Insurance info- The paper work for this part is easy. Copy said information on to the form... The hard part is knowing the exact coverage. I want Daniel to get all the help he can, that means seeing a lot of different doctors and therapists. To find ones that he fits well with takes time, and uses some of his valuable 'Allowed Visits'....And that my friends is a whole other post entirely... As fas as this one is concerned... the actual paperwork part goes smoothly. I can happily fill this form out in purple if I so like..
On to the final part of the paperwork. What we are dealing with, with Daniel is developmental, and so his paperwork reflects this. I HATE these sections. I swear the questions are designed to tie my brain in knots. You read them and they look easy enough, until you have to put your answer into words.
What do you like best about your child?
Pfft, no problem. Let me whip out my green pen and I will put how sweet he is... wait... Daniel is sweet, but I can do better then that. Most of this paperwork is about what's 'wrong' with him, I really want to make this answer count! Ok, he's got a great smile...No, every kid has that. Come on, is this question really this hard? Yes! It was for me anyway. The pressure to decide what I liked 'best' all of a sudden seems so important. Maybe I will come back to this one.
What would you like to see changed in your child?
I immedately want to put NOTHING because I am a wonderful mom, and can accept and love my child as he is. This however is not true and I realize we do need help from these professionals. So I start to write the thing that I hate most, Daniel banging his head on the floor. As soon as I see it, I scribble it out. Perhaps we shouldn't start out with his worst symptom. Too dramatic. I don't want to put something too subtle like Better table manners because at this point food all over the place is a walk in the park. Hmm... Looks like I will come back to this one too. I put my hot pink pen down.
How do you discipline your child?
Uhhhh. Great, now they are going to know the truth about me. (insert the tiny bit of doubt that this is all my fault) I think about being completely honest. I try to be consistent, give warnings, and move on to timeout, but lately I fly off the handle and overreact. I have no patience, and fight with Daniel daily about not drinking the entire half gallon of almond milk. I must admit my pride gets in the way here. Ok, so lets tone it down a little. I honestly have no idea how to discipline Daniel now. What does he understaind, what does he simply not get that I view as defiance? Lately because my heart goes out to him I let way more than I should slide. While this is very true, I sound like a push over. Frustrated I grab the black pen and simply write Timeout. Let them read between the lines.
The next three, yes count them three pages continue this way. Me over thinking each question, crossing out and rewriting. By the time I get to the end, only half the questions are answered and it looks like a second grader tried to color a rainbow on it. Flipping back through the pages it kind of brightens up the sad thought that I have to actually sit and fill out this kind of paperwork at all.
Monday, July 22, 2013
Not Nothing List
I am still in the process of absorbing this new life. I have this horrible habit of forgetting that this is all real. Even though my life is consumed by it- books, phone calls, fighting with the insurance company and paperwork.
Cooking dinner I wonder to myself why my eyes are sore, or why I have this heavy feeling in my chest. I look over to see why Daniel is so quiet, because that can lead to disaster, and notice he is placing his cars one by one from the living room to the middle of the kitchen floor. I smile at my son, thankful that they are all over the place, rather than the usual neat little rows he so obsessively lines them in. Then I remember why the heaviness is there and wonder how many people would look at Daniel and think nothing of this small action.
I rejoice in these times. These little things. I cling to them and hold them precious, adding them one by one to a growing list in my brain. A list of why the Doctors are wrong, a list I run to when Daniel is having a 'Bad Day'. A list of things and behaviors that I used to think were nothing. It's my Not Nothing list.
Cooking dinner I wonder to myself why my eyes are sore, or why I have this heavy feeling in my chest. I look over to see why Daniel is so quiet, because that can lead to disaster, and notice he is placing his cars one by one from the living room to the middle of the kitchen floor. I smile at my son, thankful that they are all over the place, rather than the usual neat little rows he so obsessively lines them in. Then I remember why the heaviness is there and wonder how many people would look at Daniel and think nothing of this small action.
I rejoice in these times. These little things. I cling to them and hold them precious, adding them one by one to a growing list in my brain. A list of why the Doctors are wrong, a list I run to when Daniel is having a 'Bad Day'. A list of things and behaviors that I used to think were nothing. It's my Not Nothing list.
Sunday, July 21, 2013
The Angry Aftermath
In the weeks following 'The Diagnosis' life was better and life was worse. Finally we had answers! But with all the answers came little realizations throughout the day. Daniels behavior was clearer now, and the more I watched, the more I saw. It was like seeing my child with new glasses, and I really really hate this prescription. Just because we had a diagnosis didn't mean I accepted it. When Daniel bangs his head on the floor, I get angry. When Daniel spins and spins over and over just to feel something, I get angry. When Daniel makes that noise, the one that clearly screams autism, a cough/grunt/yell, I get furious. Not at him, at... nothing really, just angry.
I can do this though. Just stop him from doing those things. Easy enough. If I can't see it on the outside, then it's not there anymore, right?
Fast forward 3 days.
The problem is I can't stop him from doing these things. He can't stop himself from doing these things. His mom being angry, even if its not directed at him, doesn't help. So where do I go from here?
The answer my friend is the Library. So now begins the fight. The fight for my son to do better. For me to do better. I will learn all I can about Autism and in the end be the mom Daniel diserves.
At least with this goal I don't feel so lost.
I can do this though. Just stop him from doing those things. Easy enough. If I can't see it on the outside, then it's not there anymore, right?
Fast forward 3 days.
The problem is I can't stop him from doing these things. He can't stop himself from doing these things. His mom being angry, even if its not directed at him, doesn't help. So where do I go from here?
The answer my friend is the Library. So now begins the fight. The fight for my son to do better. For me to do better. I will learn all I can about Autism and in the end be the mom Daniel diserves.
At least with this goal I don't feel so lost.
The Room With No Windows
Sitting in the play room at the developmental clinic really wasn't a big deal. At least they had toys. The Audiologists office was full of cords and plugs that was impossible to keep Daniel from, and the Occupational Therapists office was terribly hot with no windows. I hate it when rooms for this have no windows, it makes our situation feel shameful. So we waited, Nora nursing in my arms and Taylor on the floor playing with Daniel, for the team of specialists to finish 'getting their ducks in a row'. They talked about our son so casually, like they do this sort of thing every day, but then again I guess they do.
The light knock on the door annoyed me. As if we weren't expecting them, or couldn't hear them walking down the corridor in hushed voices. They walked in, all 3 of them, each with some medical degree or a long list of letters behind their name. Now the room felt cramped again, why do they have to be so small.
The lady with the awful shoes talks first. "Daniel is a sweet boy". Followed by the women who didn't say much during 'play time' "He is very focused and smart". Then the women who is sitting cross legged on the floor, like its her living room, chimes in about how cute he is.
I start to tune them out, Daniel is eating something from the floor and I try to stop him while bouncing Nora on my lap, getting out the burps. On and on they go about how wonderful my son is...why? I know all this, I didn't come here to see how great Daniel is. Then I finally get the blow.
"Daniel does meet the requirements to be classified as Autistic."
Its like they punched me in the stomach, even though both Taylor and I had our suspicions. They start talking of all the positive things about Daniel, giving us websites and programs. I don't hear any of it. The room is a little bit fuzzy now, and I want to throw up. Maybe this is why there are no windows. I just want to run out of there, get far away before I start crying. Once I do I am afraid I wont ever stop. The awful shoe lady reaches to me to take Nora so we can collect our things. I hated that. I didn't want her to hold my daughter, for that short moment this was all her fault and I wanted to slap her. Another reason for no windows. I can't breath and run out of the building.
I try and keep it together until Taylor gets Dan buckled in the car, but tears are falling onto Noras lap as I click in her infant seat. I shut the car door, lean into my husband and in the middle of downtown Manchester I began to sob.
The light knock on the door annoyed me. As if we weren't expecting them, or couldn't hear them walking down the corridor in hushed voices. They walked in, all 3 of them, each with some medical degree or a long list of letters behind their name. Now the room felt cramped again, why do they have to be so small.
The lady with the awful shoes talks first. "Daniel is a sweet boy". Followed by the women who didn't say much during 'play time' "He is very focused and smart". Then the women who is sitting cross legged on the floor, like its her living room, chimes in about how cute he is.
I start to tune them out, Daniel is eating something from the floor and I try to stop him while bouncing Nora on my lap, getting out the burps. On and on they go about how wonderful my son is...why? I know all this, I didn't come here to see how great Daniel is. Then I finally get the blow.
"Daniel does meet the requirements to be classified as Autistic."
Its like they punched me in the stomach, even though both Taylor and I had our suspicions. They start talking of all the positive things about Daniel, giving us websites and programs. I don't hear any of it. The room is a little bit fuzzy now, and I want to throw up. Maybe this is why there are no windows. I just want to run out of there, get far away before I start crying. Once I do I am afraid I wont ever stop. The awful shoe lady reaches to me to take Nora so we can collect our things. I hated that. I didn't want her to hold my daughter, for that short moment this was all her fault and I wanted to slap her. Another reason for no windows. I can't breath and run out of the building.
I try and keep it together until Taylor gets Dan buckled in the car, but tears are falling onto Noras lap as I click in her infant seat. I shut the car door, lean into my husband and in the middle of downtown Manchester I began to sob.
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