One of the reasons I started this blog was to raise awareness for autism. I don't know everything about autism. In fact, I only know how it pertains to my daughter and those I know affected with the disorder. No two people on the spectrum are alike. I am the last person to assume anything about any special needs individual. Their needs are special for a reason.
I have always taken Emily everywhere with me. Mainly because I refused to let her exceptionality make us prisoners in our own home. Over the years, we have endured the stares, whispers and eye rolls. Many times I have worried that one of her tantrums or meltdowns would result in cops or DHR being called. Predicting what sets off a person with autism is not always easy. How was I to know she would lose it right in the middle of the shoe aisle at Target when she was 6 and start screaming at the top of her lungs, sending people from all over the store peering around the aisles to see what was going on? To the unknowing observer, she looks like an overgrown toddler having a severe tantrum.
Today I decided at the last minute to take the girls shopping for jackets. While at the store Emily was happy and in her own little world walking in circles and in the personal space of the nice employee helping us. I apologized a few times and tried to contain her to one area. Anna Grace decided to spend her own money on a new bag. Emily saw that she was getting something more than the jacket and decided she needed something else as well. This made me happy as it showed she understands more than I give her credit for. Of course she wanted a tea pot and we were in a outdoor rugged wear type store. She settled for a hair band that she decided to wear on her arm and we were good to go.
Testing the waters, knowing Anna Grace needed some new shoes, we went to the shoe store. Emily wanted new shoes too. They didn't have her size and as sensory minded as she is, I knew there was only one pair she would wear. She didn't say anything, but I could tell the tide was rising. Anna Grace walked out with two new pair of shoes, and Emily nothing. I told Emily we would get her a toy. I needed trash bags, so we walked next door to Big Lots. Ironically there was a group from a local Autism residential center in there with some kids. Completely engrossed in getting my bags and the group, I forgot her toy. Thankfully they had their Halloween stuff out in full display. Emily was fascinated/scared so that kept her occupied while we waited for the group to checkout.
Realizing I forgot her toy when she reminded me, I decided to take the girls to Walmart. On a Saturday. She was asking repeatedly about her toy, but I spied several racks of $1 clothes and told her we were going to look first and then get her toy. Again they had the Halloween stuff in plain sight so she got distracted, walking in circles shouting "Boo!" loudly while I scoured the racks. We finally made it to the toy aisle after stopping to pick up sweats. I was proud she had been so patient. It had been a long afternoon. She chose an accessory kit for one of her babies and we made our way to the checkout with a buggy full of $1 clothing that we probably didn't need, some sweats and her toy. Of course all lanes were packed. One cashier had her light off and closed sign up, but she motioned for us to come on. THANK YOU JESUS I thought.
And then it happened. The thing you never want to happen in Walmart. The thing you don't want to happen when your child on the spectrum is on the verge of a meltdown. The toy would not scan. She tried several times and then set it on the back of the register sending Emily into a near panic attack. The cashier then proceeded to scan all 50 of the other items I had in the buggy all while Emily is asking about her toy, tears forming in her eyes and squeezing my arm with such strength I knew I would bruise. I calmly told Emily the lady would get it for her. Her voice was escalating and I was just repeating myself praying that a full on tantrum on the floor was not about to happen. The cashier oblivious to the fact that Emily had special needs shot her looks the entire time she was scanning the other items. I swear she was taking her sweet time scanning while enjoying the fact that she thought Emily was a brat who just wanted her toy. She finally got back around to the toy and ended up asking me how much it was after more repeated attempts to scan failed. Having no idea how much the correct price was, I spouted out $14.97. I mean doesn't everything at Walmart end in .97? By this point tears were falling down Emily's face and I was just ready to get to the car.
We got home and Emily kept saying "I cried". It clearly upset her that she could not hold it together. It upset me that I failed to acknowledge her breaking point earlier. It upset me that I failed to educate the cashier at Walmart about children like Emily. I don't expect any of my children to be given special treatment. I do however expect others to treat Emily with respect and understanding. She is not a brat who just wanted her toy.
Thanks for reading~
Jessica
Saturday, September 22, 2012
Friday, September 21, 2012
Riding in cars with kids(who have ASD)
Riding in cars with kids who have an Autism Spectrum Disorder can be challenging, stressful and dangerous.
Emily has never been an easy traveler. Short distances or long distances. She cried all the time in her infant seat. Transitioning to a booster seat created severe anxiety and she would refuse to be buckled. Kicking, screaming, hitting or pulling the hair of anyone in close proximity. I dreaded getting in the car, and was thankful in those early years as a stay at home mom, we actually stayed home for the most part.
Being away from family however, required me to travel over an hour anytime I wanted to see them. It was "easier" for me to travel to them since I didn't work. Anyone who has children on the spectrum that dislike to ride in cars, knows this creates stress and anxiety not only in the child, but for everyone in the car as well. The constant questions of "where are we going"(even though she knows), "what are we going to do" and "where is it" are repeated non stop on long car rides. Ignoring those questions can cause meltdowns of epic proportions. I have had objects thrown at me from the third row of my SUV to the front seat. Siblings have been hit as well when they become frustrated with her repeated questions and tell her to stop. Not to mention the constant crying and screaming that can rattle even the best drivers. This behavior is dangerous for anyone riding in the car with Emily. Yet throughout the years, I have packed my kids up and taken them on long car rides, knowing full well I am going to be a basket case when we arrive. Preparedness is often the key. Having many sensory items within reach, food for her to snack on and anything to occupy her while we travel helps tremendously and there is always plenty in my car. Thank goodness for her iPad, although I have had that thrown at me from the backseat as well.
Short distances are actually worse for Emily. Emily is in the car for a total of 2 hours every day. Thirty minutes in the morning and an hour and a half every afternoon. The constant stopping and starting of the car can create anxiety unlike any I have seen. School traffic is pretty bad here, as it is most places. Waiting in a line of cars to drop off or pick up one of the other kids causes her to cry and tell me to "go". Unfortunately there is no way around this and many times she will hit her sister or brother as they are getting out of the car to go to school. As a parent there is no feeling worse than sending your child into school after a scenario like that. She is remorseful for her actions although controlling them is difficult. I have no control over the traffic or control over her while I am driving. This can be dangerous again for anyone riding in the car with Emily. I can't tell you how many times I have actually had to stop the car to break up fights and calm meltdowns. I am the parent who stands by my words when I say, "Don't make me stop this car."
We have made many social stories and video modeling over the years to help Emily in the car. I am so thankful for her iPad, because she can access the video stories herself if I prompt her while I am driving. She is unable to read, so the social stories only help to reinforce the appropriate behavior before or after a car trip. My daily car rides with her consist of me constantly reassuring her and answering her questions just to prevent a meltdown. Often just engaging her in conversation is enough to distract her from all of the traffic lights or stop signs that require me to stop the car. This is EXHAUSTING, but there is nothing else I can do. I don't have sitters to leave her with while I do carpool in the afternoons for the other two kids. I don't have a magic wand to make the roads clear.
Traveling with Emily is not always an easy feat, but we keep rolling along...
Thanks for reading~
Jessica
Emily has never been an easy traveler. Short distances or long distances. She cried all the time in her infant seat. Transitioning to a booster seat created severe anxiety and she would refuse to be buckled. Kicking, screaming, hitting or pulling the hair of anyone in close proximity. I dreaded getting in the car, and was thankful in those early years as a stay at home mom, we actually stayed home for the most part.
Being away from family however, required me to travel over an hour anytime I wanted to see them. It was "easier" for me to travel to them since I didn't work. Anyone who has children on the spectrum that dislike to ride in cars, knows this creates stress and anxiety not only in the child, but for everyone in the car as well. The constant questions of "where are we going"(even though she knows), "what are we going to do" and "where is it" are repeated non stop on long car rides. Ignoring those questions can cause meltdowns of epic proportions. I have had objects thrown at me from the third row of my SUV to the front seat. Siblings have been hit as well when they become frustrated with her repeated questions and tell her to stop. Not to mention the constant crying and screaming that can rattle even the best drivers. This behavior is dangerous for anyone riding in the car with Emily. Yet throughout the years, I have packed my kids up and taken them on long car rides, knowing full well I am going to be a basket case when we arrive. Preparedness is often the key. Having many sensory items within reach, food for her to snack on and anything to occupy her while we travel helps tremendously and there is always plenty in my car. Thank goodness for her iPad, although I have had that thrown at me from the backseat as well.
Short distances are actually worse for Emily. Emily is in the car for a total of 2 hours every day. Thirty minutes in the morning and an hour and a half every afternoon. The constant stopping and starting of the car can create anxiety unlike any I have seen. School traffic is pretty bad here, as it is most places. Waiting in a line of cars to drop off or pick up one of the other kids causes her to cry and tell me to "go". Unfortunately there is no way around this and many times she will hit her sister or brother as they are getting out of the car to go to school. As a parent there is no feeling worse than sending your child into school after a scenario like that. She is remorseful for her actions although controlling them is difficult. I have no control over the traffic or control over her while I am driving. This can be dangerous again for anyone riding in the car with Emily. I can't tell you how many times I have actually had to stop the car to break up fights and calm meltdowns. I am the parent who stands by my words when I say, "Don't make me stop this car."
We have made many social stories and video modeling over the years to help Emily in the car. I am so thankful for her iPad, because she can access the video stories herself if I prompt her while I am driving. She is unable to read, so the social stories only help to reinforce the appropriate behavior before or after a car trip. My daily car rides with her consist of me constantly reassuring her and answering her questions just to prevent a meltdown. Often just engaging her in conversation is enough to distract her from all of the traffic lights or stop signs that require me to stop the car. This is EXHAUSTING, but there is nothing else I can do. I don't have sitters to leave her with while I do carpool in the afternoons for the other two kids. I don't have a magic wand to make the roads clear.
Traveling with Emily is not always an easy feat, but we keep rolling along...
Thanks for reading~
Jessica
Wednesday, September 19, 2012
With Holding
Poop. I can't believe my first blog post after a summer break is about poop(or lack there of). Poop.
Emily has always had severe issues with bowel movements. Bowel movements, I suppose, is the appropriate term I should use. Although I have the urge to scream SHIT many times. She potty trained fairly easily and I always knew when she needed to poop as a baby. She got that look. You know the one. After the first few times on the potty, she became hesitant to poop and wanted complete privacy when she did it. She would get on and off the toilet many times when pooping. After each little bit, she would get up and walk around and then go back and do more. This was MESSY as she could not wipe herself and would not allow me in the bathroom with her. Her bowel movements were not that frequent so I was just pleased anytime she went. She would cry while going, but her stools were never hard. This was a complete sensory issue for her. She didn't like the feel of it at all and thus began her journey with holding.
She also never went to poop anywhere other than home. Once she started school, the with holding became even worse. I would give her laxatives to stimulate her to go, and that still would not work. We tried miralax to no avail. The only solid thing that seemed to help on occasion was sweet tea. Once she started on the risperdal, her sensory issues became less intense. She would sit on the potty the entire time to complete her poop. I was THRILLED! No more crying or running around with shit all over her and the bathroom. It was a milestone I will never forget. However, she was with holding for weeks. She would refuse to eat, because she knew the urge to poop would follow. It became more of a control issue than sensory.
This for us has been one of the more difficult issues associated with her Autism Spectrum Disorder. Children on the spectrum often with hold their bowel movements. For Emily, the need to poop is there, but for reasons only known to her, she refuses. This inability to eliminate the wastes that have been building up in her body creates massive meltdowns and behavior issues. A simple trip to the bathroom to tinkle can end up with her on the floor screaming, because she knows if she sits to urinate the urge to poop will be there.
So while I am typing this post, she is at school feeling the need to poop after a very long two weeks. I am picking her up before lunch, getting her some sweet tea from Milo's and bringing her some to an empty house in hopes that TODAY is the day that she poops.
Thanks for reading~
Jessica
*Side Note*
A friend thought my grammatical contradications were funny. She liked how I used the word "shit" along with words like "tinkle". I will say this. I don't use the word shit loosely and don't like to say it at all, but when it is contained in a potty or diaper, it is referred to as poop. When it is in the hair down to the toes and there are brown footprints on every surface of your house, it then becomes "shit".
Emily has always had severe issues with bowel movements. Bowel movements, I suppose, is the appropriate term I should use. Although I have the urge to scream SHIT many times. She potty trained fairly easily and I always knew when she needed to poop as a baby. She got that look. You know the one. After the first few times on the potty, she became hesitant to poop and wanted complete privacy when she did it. She would get on and off the toilet many times when pooping. After each little bit, she would get up and walk around and then go back and do more. This was MESSY as she could not wipe herself and would not allow me in the bathroom with her. Her bowel movements were not that frequent so I was just pleased anytime she went. She would cry while going, but her stools were never hard. This was a complete sensory issue for her. She didn't like the feel of it at all and thus began her journey with holding.
She also never went to poop anywhere other than home. Once she started school, the with holding became even worse. I would give her laxatives to stimulate her to go, and that still would not work. We tried miralax to no avail. The only solid thing that seemed to help on occasion was sweet tea. Once she started on the risperdal, her sensory issues became less intense. She would sit on the potty the entire time to complete her poop. I was THRILLED! No more crying or running around with shit all over her and the bathroom. It was a milestone I will never forget. However, she was with holding for weeks. She would refuse to eat, because she knew the urge to poop would follow. It became more of a control issue than sensory.
This for us has been one of the more difficult issues associated with her Autism Spectrum Disorder. Children on the spectrum often with hold their bowel movements. For Emily, the need to poop is there, but for reasons only known to her, she refuses. This inability to eliminate the wastes that have been building up in her body creates massive meltdowns and behavior issues. A simple trip to the bathroom to tinkle can end up with her on the floor screaming, because she knows if she sits to urinate the urge to poop will be there.
So while I am typing this post, she is at school feeling the need to poop after a very long two weeks. I am picking her up before lunch, getting her some sweet tea from Milo's and bringing her some to an empty house in hopes that TODAY is the day that she poops.
Thanks for reading~
Jessica
*Side Note*
A friend thought my grammatical contradications were funny. She liked how I used the word "shit" along with words like "tinkle". I will say this. I don't use the word shit loosely and don't like to say it at all, but when it is contained in a potty or diaper, it is referred to as poop. When it is in the hair down to the toes and there are brown footprints on every surface of your house, it then becomes "shit".
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