Think of every time you wanted to say something to someone, but didn't. Think of every time you wanted to hit someone, but didn't. Socially, these things are looked upon poorly. We have learned over the course of our lives to NOT do these things. We understand and are embarrassed (some of us), by the thought of being looked at strangely, or being criticized for being obnoxious and rude. Now...think of what it would be like to not have that capability. Phoebe can't control her urges, her impulses, or her rudeness to be exact. When she wants to hit someone, say something, do something...she just DOES it. There isn't that ability to look around and wonder..."who is watching me?" And, really...she doesn't care. She doesn't realize social graces. She doesn't care if someone stares, or someone says she's obnoxious, or that she has no manners. SHE DOESN'T CARE. She tries to care...and has learned that she should care- but it's not really there. Is there that ability to learn these things? I hope so.
Is some of it learned behavior? Yes. Is some of it obnoxious and teenager like? Yes. But, for the most part--she can't control that part of her brain. We are continuing to get behavior therapy to help her learn that these things are not socially acceptable. I really want her to be able to live, and work someday without saying things like..."you're ugly, and your dress is short", or "you're a horrible driver," or my favorite, "You look fat." When someone is 13, but has the mental capacity of a 6-7 year old (maybe), they surely look like they should know what is right, and what is wrong. This is not true. Looks are deceiving, and with statistics like 1 in 88 for autism...odds are you are going to run in to one of these kids someday. Please try and be patient when you are out and about and hear or see someone doing something odd. They could be autistic - and they can't help it. THEY didn't ask to be this way. I can guarantee, if you stare at Phoebe...she will say, "STOP STARING AT ME YOU FREAK!" (and those of you who know her- know I am right)
One of my favorite stories about Phoebe was when she was about 2 years old. We were out shopping, and she was doing her normal shrieking every 2-3 minutes. This was not a cry, or an attempt at attention- just something she had to do. It was literally a shriek...and then she'd stop. An older lady stopped me and said..."CAN YOU PLEASE GET HER TO STOP DOING THAT!? My hearing aid is buzzing, because of her!" So, I kindly replied..."Lady, if I could do that...I would be a millionaire." To which she stomped off. :) (It started early with Phoebe)
I hope that Phoebe can learn and evolve to a young lady that can control these urges and impulses. The brain is an interesting thing...and I plan to work on changing hers as much as I can.
For now...be patient with her. She can't help it.
Tuesday, July 24, 2012
Thursday, July 5, 2012
Recharged and acceptance
This is the one week of the year that I get to myself. I have 6 days to recharge, go on vacation, clean-up, or do what I want to relax. Due to a burst pipe at my house, the clean-up and organize mission was put on hold, so I came to the beach. I don't have to worry about locking the fridge and the pantry, or making sure my phone isn't in the hands of the iPhone wizard (who changes my settings, texts multiple friends, and changes my passwords:) But this, of course, is only temporary...until she comes home.
After many long years of tears, questions, appointments, outbursts, meltdowns, and general anxiety (by both of us)...I have accepted Autism. I can sometimes even laugh at it. Recently, while engaging Phoebe in a "normal" conversation...I asked her what she thought her dad and step-mom would name their new baby. She replied..."pain in the ass?" I laughed for 10 minutes. I corrected her, of course, and told her no...that the baby was not going to be a pain in the ass. These are the conversations I have with my Phoebe. (and probably always will) I have accepted that I will be that parent with an older child, who is following me around at the store. I will probably be the parent of a child, who never drives herself around, who never dates (I hope:), and who will probably need some sort of care for the rest of her life. I accept that. A year or so ago, while working, I met an older lady in her 90's at a nursing home. She lived there with her daughter. The daughter had Down's Syndrome, and the mother had been caring for her for more than 60 years. I shared with her about my own daughter and she looked right at me and said..."but who better to take care of her than you?" She also said that from the time her daughter was born...she knew she would take care of her. This lady was truly inspiring as I watched her help her daughter eat, as they laughed about silly things.
I accept that I won't see Phoebe dance at a recital, or play soccer like I did. I will however, enjoy seeing her laugh at her brother and swim with her cousins, say inappropriate things at inappropriate times, and doing the things she loves. (like changing the settings on my iPhone, and watching MSU vs. Minnesota in basketball 10 times a day)
It's autism. I guess I have to accept that.
Tuesday, June 12, 2012
Sameness
I have said it before...but I'll reiterate that my life is a script. My life as mom, is scripted when it comes to Phoebe. She asks something...I always answer with the same thing. In the summer, this isn't any different. In fact, it's multiplied by 100. (or a million - the number is random) Phoebe's scripted life still gets her up at 6, and ready for bed at 7 pm . The hours in between are filled with those very questions and answers that give her ASD, OCD, and anxiety, what she needs to be ok. As I age, I sometimes think I am going crazy. "Did she just ask me the same question 30 times until I answered the way she expected me to?" In fact, she did. The mere idea of changing the answer can sometimes send her in to a full on tantrum. This I avoid at all costs, but should I? (I don't know...but I do)
Case in point...recently Phoebe asked when she got off the bus..."Mom, what are we having for dinner, and what are we doing tonight.?" So, I replied in my funny- ha, ha, way..."we are eating dirt, and going on a boat ride to Florida." She stared...I stared. What came next was 2 hours of..."Are we really eating dirt? Are we really going on a boat? I don't like boats. Are we really eating dirt?" After that...I yelled..."OH MY GOD...I WAS KIDDING!!" And, it hit me...just like it always does. Everything is reality to her. EVERYTHING. You say it, you mean it. Just like the ride at Disney's Epcot that has Lightening in the beginning. To her, that is REAL lightening...and that means a storm. (which means royal meltdown including calling me every mother f*ing word imaginable)
So, I'll continue to make her life easier (and let's be honest...mine too). I'll answer the questions the way she wants me to, and then I'll slowly make her expand her life. Little by little I will interject new scenarios, and new ways to deal with things. I'll keep parenting the ASD as best I can. As best I can- whatever that means. I'll sit here every evening printing out her schedule for the next day, so that she knows what to expect. (And me too)
So for now..."We are having Chicken for dinner, and we aren't going anywhere tonight." And, tomorrow morning..."Yes, you can have a piece of bread and an apple, and take a bath."
Monday, June 4, 2012
and so it begins...
And so the summer begins this week...with one anxious, stressed autistic girl. The things that have been routine for the whole year will come to an abrupt halt. The bus will not arrive at 7:50 am every morning to pick her up, and drop her off at 3:50 every afternoon. She will not be on a tight schedule from 8:30 am until 3:30 pm- down to the 1/2 hour or more. She will not know her expectations at home on a daily basis, until I set them. The constant asking, wanting and needing food will begin to stress me out beyond belief.
Last night was the first of many nights that she was awake, on and off, all night. She even managed to ask what day was her last day of school at 3:00 am, which led me to realize that was what this whole thing was about. As I write this, I am getting her eating schedule ready, and her daily list together. Each morning, every summer since she was 5 years old, we have made a daily schedule together. It helps her know what to expect for that day. Even though it's not the same as school--it's a close second. Not only does it help her, but it helps me in more ways that you can ever know. If we don't have it...she is right next to my side every waking moment of the day asking... "what are we doing now mom?", "when is dinner mom?", "what can we do now mom?". A schedule at least gives me a few moments in the day- where she knows what she should be doing. Does she always do it? No. (At least she has something to look at and know there isn't anything huge planned for that day) Does she have more meltdowns in the summer? YOU BET. Do I have more meltdowns in the summer? Yep. :) However, my meltdowns are more based on the fact that I might need to take out a small loan to pay for a babysitter, and to buy the amount of groceries I will need to feed these 2 children for the summer.
So, today will be my last day of full freedom, as I get her schedule together, and her life (and mine) organized for the next 3 months.
I think I better call my doctor, so I can double up on MY prozac...and my prilosec.
Look out summer...here we come!
Last night was the first of many nights that she was awake, on and off, all night. She even managed to ask what day was her last day of school at 3:00 am, which led me to realize that was what this whole thing was about. As I write this, I am getting her eating schedule ready, and her daily list together. Each morning, every summer since she was 5 years old, we have made a daily schedule together. It helps her know what to expect for that day. Even though it's not the same as school--it's a close second. Not only does it help her, but it helps me in more ways that you can ever know. If we don't have it...she is right next to my side every waking moment of the day asking... "what are we doing now mom?", "when is dinner mom?", "what can we do now mom?". A schedule at least gives me a few moments in the day- where she knows what she should be doing. Does she always do it? No. (At least she has something to look at and know there isn't anything huge planned for that day) Does she have more meltdowns in the summer? YOU BET. Do I have more meltdowns in the summer? Yep. :) However, my meltdowns are more based on the fact that I might need to take out a small loan to pay for a babysitter, and to buy the amount of groceries I will need to feed these 2 children for the summer.
So, today will be my last day of full freedom, as I get her schedule together, and her life (and mine) organized for the next 3 months.
I think I better call my doctor, so I can double up on MY prozac...and my prilosec.
Look out summer...here we come!
Friday, May 25, 2012
What is normal?
What is normal? My normal is Phoebe. She was a happy baby. She was a sick baby. She was a delayed baby, but she was normal to me. She smiled at me when she was supposed to. She cried when she was hungry. (she still does) She laughed and giggled, and said "dada" and "turf" (dog) when she was supposed to. What she didn't do was sit up on time, or crawl, or walk on time. Eventually, most of these things came...and that was normal. "She's big for her age. She'll do things later than most babies." Ok, I took that to be normal, and I went with it. She had terrible asthma, and breathing treatments, and 1000 ear infections, and tubes, and all that stuff. Normal stuff. Nothing out of the ordinary. At least to me...it didn't seem that way.
Was it stressful? Yep. Was it rewarding? Yes. She would shop with me (and nana), and meet friends, and laugh and play with others. She was not that different. She was chubby, happy, smiley and funny! The first noticeable difference was in pre-school. She wasn't where she should be. Ok, sometimes that is normal. I immediately started getting her the help she needed. I got her extensive speech therapy, and occupational therapy, and physical therapy. I did it all. It was normal. I did not think that "developmentally delayed" was a label. It was who, and what she was. Since then, I have done everything I can to help her. This is my normal.
Recently, she was in her bed crying. I went in and asked her what was the matter. This is not an easy question for her...she can't really answer, or know most of the time. She replied..."I have no idea, but I can't stop!" I laughed. I actually laughed. I sat and looked at my autistic, delayed, PDD-NOS, whatever-you-want-to-call-it daughter and said to her..."yep, you're a teenager, and that's normal." I walked out of her room knowing that some of this is just normal teenager stuff.
Then I thought... "OH MY GOD! I HAVE A TEENAGER!" (Is that normal?)
**A few more funny things Phoebe has said lately. (to lighten the mood)
Was it stressful? Yep. Was it rewarding? Yes. She would shop with me (and nana), and meet friends, and laugh and play with others. She was not that different. She was chubby, happy, smiley and funny! The first noticeable difference was in pre-school. She wasn't where she should be. Ok, sometimes that is normal. I immediately started getting her the help she needed. I got her extensive speech therapy, and occupational therapy, and physical therapy. I did it all. It was normal. I did not think that "developmentally delayed" was a label. It was who, and what she was. Since then, I have done everything I can to help her. This is my normal.
Recently, she was in her bed crying. I went in and asked her what was the matter. This is not an easy question for her...she can't really answer, or know most of the time. She replied..."I have no idea, but I can't stop!" I laughed. I actually laughed. I sat and looked at my autistic, delayed, PDD-NOS, whatever-you-want-to-call-it daughter and said to her..."yep, you're a teenager, and that's normal." I walked out of her room knowing that some of this is just normal teenager stuff.
Then I thought... "OH MY GOD! I HAVE A TEENAGER!" (Is that normal?)
**A few more funny things Phoebe has said lately. (to lighten the mood)
- "mom, I need another American GOO-GOO doll." (not even sure how she came up with that)
- "I'm just chillaxing"
- I said to her in the car..."you need to calm down." She replied..."I AM CALM!!!" (I laughed)
- "Mom, you should really brush your hair before you take him to school." :) (OMG- am I embarrassing her?)
Friday, May 11, 2012
Mothering plans
Mothers Day has brought up many thoughts this week. My mother is the funniest, and the best mom in the world. I realize many people say that, but those of you who know my mom know she is THE BEST. We do everything together, talk many times per day, and enjoy each others company. It really is the greatest. I can't imagine how my mother got through life, when her mother died when she was in her early 40's. When I was little- that seemed sooooo old. Now, as I look to 42...it seems really young. Not sure how she dealt with that, and raised my brother and I with my dad.
All I ever wanted was to be just like my mom. I wanted to go and graduate from Michigan State, and I did. I wanted to date my high school sweetheart, get married and have children, and I did. I wanted to be a stay-at-home mom, and I was. However, that's as far as I got. I never looked past raising children. I wanted to be a mom, and I really never looked forward. During my early 20's, I worked knowing there would be an end in sight, and that kids would be my focus. That went as planned. The wrench came in when the kids were little, and my husband left and we subsequently divorced. That was the first thing that was not in the plan. My thinking changed. My life changed. Then came the autism diagnosis. (PDD-NOS)
Autism was also not in the plan. (And, who in their right mind would plan for that??) When you hear about kids with disabilities, before you actually have children, you think that it's not something you'll ever have to worry about. Statistics are on your side. (so you think) I had the same ideas for my babies when they were born - that my parents had for me. They will grow up, and go to college and move out. My husband and I will travel, and do all those things that parents do when their kids leave. Right? However, autism was not in that plan. As Phoebe gets older, I realize that this "hands-on" parenting thing may go on for me - for a lot longer than most average children. I didn't plan for this. Will it fit in to the plan? Of course it will. But, again...this is not where I thought I would be when I was 42. When Phoebe was 12 months, she began to scoot on her butt to get around. We called her the butt scooter. She never crawled, and walked late. That seemed so cute then. I knew she would walk eventually, and that she wouldn't "scoot" down the aisle at her wedding. Now I look at her and think...wedding? Not sure that's even possible.
Phoebe has made huge strides in her life. She has overcome a lot of obstacles, and I enjoy seeing her mature as little as it may be. She makes me laugh. She makes me cry. She makes me scream. I guess that makes me her mother. Forever. No matter how long that means. Parenting her for the rest of my life has situated itself in to my plan.
Autism was not in the plan- but it's in our lives. Forever.
Happy Mothers Day:)
All I ever wanted was to be just like my mom. I wanted to go and graduate from Michigan State, and I did. I wanted to date my high school sweetheart, get married and have children, and I did. I wanted to be a stay-at-home mom, and I was. However, that's as far as I got. I never looked past raising children. I wanted to be a mom, and I really never looked forward. During my early 20's, I worked knowing there would be an end in sight, and that kids would be my focus. That went as planned. The wrench came in when the kids were little, and my husband left and we subsequently divorced. That was the first thing that was not in the plan. My thinking changed. My life changed. Then came the autism diagnosis. (PDD-NOS)
Autism was also not in the plan. (And, who in their right mind would plan for that??) When you hear about kids with disabilities, before you actually have children, you think that it's not something you'll ever have to worry about. Statistics are on your side. (so you think) I had the same ideas for my babies when they were born - that my parents had for me. They will grow up, and go to college and move out. My husband and I will travel, and do all those things that parents do when their kids leave. Right? However, autism was not in that plan. As Phoebe gets older, I realize that this "hands-on" parenting thing may go on for me - for a lot longer than most average children. I didn't plan for this. Will it fit in to the plan? Of course it will. But, again...this is not where I thought I would be when I was 42. When Phoebe was 12 months, she began to scoot on her butt to get around. We called her the butt scooter. She never crawled, and walked late. That seemed so cute then. I knew she would walk eventually, and that she wouldn't "scoot" down the aisle at her wedding. Now I look at her and think...wedding? Not sure that's even possible.
Phoebe has made huge strides in her life. She has overcome a lot of obstacles, and I enjoy seeing her mature as little as it may be. She makes me laugh. She makes me cry. She makes me scream. I guess that makes me her mother. Forever. No matter how long that means. Parenting her for the rest of my life has situated itself in to my plan.
Autism was not in the plan- but it's in our lives. Forever.
Happy Mothers Day:)
Sunday, May 6, 2012
is EVERYTHING Autism?
Autism is non-stop. During the weekends, I feel like I can't stop thinking about what I could be doing for myself, what I should be doing better for my kids, what I could be doing for my health, what I want to be doing with my friends, and those "trendy" fun things I want to do with my kids. It's the idea of what life should be. The idea. Not the reality. My personality could not be farther from what my daughters is. (for the most part) She has high anxiety about the unknown, and I really don't. She likes schedule rigidity, and sameness in foods, and routine routine routine. I really...um, don't. (Can I say that?) Life isn't that simple. I can't make things the same every day. I can't control everything...I just can't. I try really hard to, but in the end it's not really possible. Autism is non-stop, and so is life. I hate to say it, but the autism is going to have to adapt. (sorry- but it's true)
This past weekend we had a garage sale. Yes, my son helped me tremendously, and Phoebe helped here and there too. But, tonight I am one tired momma. My son got asked to go to a movie, and so I let him. Phoebe wanted to go, and I hesitated on whether to take her. Movies are not her thing, but the other kids were going, and she wanted to go with them. Finally, I just said no. Right or wrong...I just didn't have it in me. I didn't want to go out for pop, and the bathroom 16 times--just so she could get up. I just wanted to go home and relax. As selfish as that is...I just said no. She was not happy, but finally settled down. There are just days I don't want to deal with the autism. (more days than I care to think about) Tonight, the autism had to adapt.
When people or Facebook asks what super hero you would be, or what super power you would have....my answer would be the ability to have a force field like shield around me and Phoebe. Then when something came up that she didn't like...I could just yell..."SHIELD!" and she and I would be ok. Right? Or maybe I'd choose to be invisible. That would put a serious wrench in the non-stop autism world Phoebe lives in. Mom? Mom? Mom? (that could get annoying)
Needless to say, I had to be selfish and do something for me. I felt bad, but in the end it was all ok. Everyone is now sound asleep and ready for a new week.
Ok Autism- I'm ready for this week. SHIELD! (darn, it didn't work)
This past weekend we had a garage sale. Yes, my son helped me tremendously, and Phoebe helped here and there too. But, tonight I am one tired momma. My son got asked to go to a movie, and so I let him. Phoebe wanted to go, and I hesitated on whether to take her. Movies are not her thing, but the other kids were going, and she wanted to go with them. Finally, I just said no. Right or wrong...I just didn't have it in me. I didn't want to go out for pop, and the bathroom 16 times--just so she could get up. I just wanted to go home and relax. As selfish as that is...I just said no. She was not happy, but finally settled down. There are just days I don't want to deal with the autism. (more days than I care to think about) Tonight, the autism had to adapt.
When people or Facebook asks what super hero you would be, or what super power you would have....my answer would be the ability to have a force field like shield around me and Phoebe. Then when something came up that she didn't like...I could just yell..."SHIELD!" and she and I would be ok. Right? Or maybe I'd choose to be invisible. That would put a serious wrench in the non-stop autism world Phoebe lives in. Mom? Mom? Mom? (that could get annoying)
Needless to say, I had to be selfish and do something for me. I felt bad, but in the end it was all ok. Everyone is now sound asleep and ready for a new week.
Ok Autism- I'm ready for this week. SHIELD! (darn, it didn't work)
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