It's too loud!

October is National Sensory Awareness month.  Almost 1 in 20 individuals are affected by Sensory Processing Disorder(SPD).  Those with autism or aspergers are at increased risk of having SPD.

Noise is a common issue for many people on the spectrum.  Many everyday sounds that most of us take for granted, cause children with ASD to retreat, hold their ears, scream, or tantrum.  The sound of a bee buzzing makes my daughter hold her ears.  She is verbal and has told me many times that bumble bees are too loud.  She dislikes the sound of the hair dryer.  Bath time routines have always been difficult.   I would have to chase her and practically hold her down when she was younger to dry her hair.  Over the past 10 years she has become somewhat desensitized, however she still holds her ears.  She can pick up conversations from another room.   She has a difficult time concentrating if there are too many noises going on at once.  Rain on the car roof is often too noisy for her.

 

There are many factors to consider when dealing with an individual who has SPD.  We can't control the environment so it makes everyday situations like going to the store or school extremely challenging.  Do we force the individual into an environment that we know is going to create stress and anxiety because of noise?  Do we hope that eventually the exposure will desensitize them?  Do we avoid those situations at all costs to make it easier for them?  For me personally, I have not had the choice of avoiding very many situations that cause stress and anxiety because of SPD for Emily.  She is forced to attend recitals, ball games, and shopping since I have no one to leave her with.  There are times where it is easier than others.  I will say that as she has matured the severity of the consequences of her SPD have lessened.  I am not sure if it is the exposure, or her ability to control her own reactions better, that has made this possible.  I can definitely tell a difference. 

 

I came across a video the other day that gives some insight as to what auditory stimuli is like for someone on the spectrum.  I found it extremely helpful for me in understanding just how SPD affects Emily.  Please listen to this video and put yourself in the shoes of a child on the spectrum who has a hard time regulating their emotions as well as processing noise...What Autism Feels Like 

 

Thanks for reading~

Jessica

National Sensory Awareness Month

October is National Sensory Awareness Month.  SPD(sensory processing disorder) affects almost one in twenty people.  Individuals with autism or aspergers are at a higher risk of being affected by SPD. 

I first learned about Sensory Processing Disorder 12 years ago after my first child was born 3 months prematurely. At 18 months of age she was diagnosed with SPD.  She refused to touch certain objects and refused to eat certain foods based on the texture.  I was directed to a book called the The Out-of-Sync-Child by Carol Kranowitz.  The SPD spectrum is extremely broad, and as I read it, I only concentrated on the areas that my daughter had trouble with.  She received occupational therapy, as do most children who have a diagnosis of SPD.  We were very fortunate that she outgrew all of her sensory issues by the time she was 5.  When Emily was born, she was completely different from Anna Grace and I assumed it was because she was a full term baby.  She put everything in her mouth, smelled anything and was sensitive to sound and sights.  It never occurred to me that she too suffered from SPD and was just on the opposite end of the sensory spectrum from her sister.  It was not until she was diagnosed with an autism spectrum disorder at the age of 3 that we discovered she had SPD.

Emily with her Scentsy Buddy

For Emily, SPD has been chronic and debilitating at times.  Over a year ago I decided to help those who have sensory issues like Emily, by selling Scentsy and using my profits to give Scentsy Buddies to kids with autism for free.   You can read about it in this blog post, http://somewhereoverthespectrum-jessica.blogspot.com/2011/08/if-i-only-had-heartpart-2.html.

As a way of bringing awareness to SPD, I am giving away ANY item(up to $35) to one person from the Scentsy Fall/Winter catalog which can be viewed online at my Scentsy website. I will announce the winner on October 10th and you will have 48 hours to give me your order.  You can use this opportunity to get something for your own senses or someone you know.  Right now there is a special offer of Buy one Buddy get one free. These make excellent gifts for any child on your list.

Good Luck and Thanks for reading~
Jessica
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A brat who just wanted her toy

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

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

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".

Breaking point

I am just going to say it...I am a MESS. I have been having a difficult time the past few weeks. I just can't seem to get it together. So many thoughts going on in my mind and I have lost my focus. I am going through my everyday routine without gusto. Without energy.  I am weak, vulnerable and feel like I could break at any moment. I must appear fine on the outside though, as everyone is telling me I have never looked better. I still have the ability laugh and pretend that I am not hurting on the inside. I am strong for all those around me yet I can't make myself get over this hump. Is it a reaction to stress, bottled up emotions, a mid-life crisis?

I have spent the past year picking up the pieces from those I care about. I have been there when they were at low points in their life, lifting them up and offering support. I can't go into details but they are stories that I hope to be able to share one day. It has affected me in so many ways, yet I have been unable to speak about it. Only a few close friends and family know. Those who know me, know that I am not a private person. I wear my heart on my sleeve and speak openly about the challenges that I face everyday. However, this just isn't my story alone to share. Bottled up emotions obviously have ill effects on me. Which is why I started blogging in the first place.

My daddy was diagnosed with prostate cancer two years ago. He had just had a stroke a few months earlier that left him disabled. He was not a candidate for chemotherapy or surgery because of his health. He did a series of radiation treatments and hormone therapy which kept the cancer at bay for 2 years. We just found out that the cancer needs to be treated again and the only option left is cryotherapy. It is not a cure and the success rate of course is not 100 percent. I pray that this will give us more time with him. I have been in denial the past two years and just in the past few weeks have accepted the fact that time is precious. I am struggling with the emotions that come with that acceptance.

My kids are growing up and I am getting older. Even the new found independence I am celebrating with Emily, has me sad. I am a nurturer. I need to be needed. I have poured my entire being into their lives for the past 12 years and I am feeling somewhat lost at this new chapter in our lives. All three kids in school a full day in the fall, means that I will have time on my hands. I have no idea what I will do. Sure there will be volunteer opportunities at the school and enough chores to keep me busy, but really, what will I do? What do I want to do?

What I really want to do now is run away. I want to escape these emotions that bring me such heartache. The things that usually help are not helping. Running on the treadmill gets me nowhere. Reading books only temporarily lets my mind rest. Music and laughter only mask my pain. I need someone to take care of me right now, yet I could never allow that. In my eyes, that means weakness. I am the strong one who is incapable of breaking. I am made of steel and can handle anything. I know that God does not gives us more than we can handle. My faith is keeping me afloat. I know that everything happens for a reason and I am reassured that this time in my life is one that I will be able to look back on with clarity and understanding in the future.

So while I am teetering on a breaking point due to stress, emotions or some sort of mid life crisis, it could very well just be PMS. If you see me and I seem distant, know that I am struggling. If I don't respond to your email, phone call or text, please know that I am not ignoring you. I am just trying to get through the day and focus on what needs to get done. I am aware that I could benefit from medication as well, but I have never been one to even take Tylenol when I have a headache. Just simple understanding from friends and family right now is all I need. Oh...and a maid, vacation and possibly another baby to keep me busy : )

Thanks for reading~
Jessica

Update- Since I posted this several hours ago, I already feel so much better. Thanks to encouragement from a sweet friend in writing this post. Writing is SO therapeutic for me.

"INDEPENDENT, Do you know what that means?"

The title of the post is from a rap song that Emily heard a jingle from on the radio a few weeks ago. She has been walking around singing "INDEPENDENT Do you know what that means" ever since. It struck me as ironic, since I have noticed much more independence from her in the past six months.

As a mama, I love doing things for my kids. It's part of my job. When Anna Grace was born so prematurely, there was so much physically that she was not strong enough to do. I probably coddled her more than I should have. Nurturing is my nature. When Emily was born, everything I would ask her to do created severe anxiety and behavior issues, so naturally I tried to reduce the stress for her by helping. Having Luke has been such an eye opener for me. I am not sure if it's because he is a boy, if it's just his nature or if it's because he's my third child and I am TIRED, but he is the most independent of my three children. Always wanting to do things himself.

Over the past few months, Emily has started to exhibit signs of independence in several areas. She dresses herself although shoes and socks are still difficult. She always takes her towel to the dirty clothes after bath. She knows if our dog needs to be let in or out. She has started going into the refrigerator and pouring her own drink if it's not too full. If the Gatorade bottle is too full, then she will get a cup and water from the sink. Before bed she gets a stool in order to reach the ice maker for her nighttime water. She still has difficulties with hot/cold, so I have not encouraged her in the food prep area. She independently chooses snacks from the pantry if she is hungry. She can brush her teeth independently and has attempted to toilet independently a few times. Albeit a MESS!! While these things may seem insignificant to most parents of a 9 year old, for me they are major accomplishments. Things I was not sure she would ever be able to do. However small they are, I feel they are good building blocks for more independence in the future. I have hope that she will eventually be able to care for her personal needs completely independent of help.

Another GIANT leap of independence is her ability to go places and do things without me. Her separation anxiety is severe and she has struggled with it over the years. Just recently she went back to get her teeth cleaned without me. The dentist alone causes severe stress and we have just begun to acclimate her to the cleanings. For her to go back without me was a major hurdle. She also independently got her haircut the other day. For the past 9 years, haircuts consisted of using the same stylist with me standing right beside her reminding her to look down and be still. Reassuring her it was ok. I was so proud. There are very few people that I trust with Emily. I have been reluctant to leave her with sitters because of her behavior and anxiety when she misses me.  Previous sitters include family, teachers and therapists but only a handful of times over the past 9 years. She just recently spent the night away from me at my brothers house. We are all surprised she made it through the night and even went in the first place. There are times when I go into her room and she tells me to get out. She really is growing up and maturing in ways that I never thought possible.

I know that I have a great deal of work to do with her in order to make her as independent as possible. I have never pushed her to be independent because it created anxiety. I have waited 9 years and she is showing me that she is ready to make these steps. My prayer and hope is that I can give her the proper tools for her to navigate this world with as little help as possible. She is so proud of herself when she does things by herself. So am I.

Thanks for reading~
Jessica