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"Someday I'll wish upon a star
And wake up where the clouds are far
behind me.
Where troubles melt like lemondrops
Away above the chimney tops
That's where you'll find me"

Sunday, April 29, 2012

My DPS Review




My DPS
by The Language Express, Inc., the makers of The Social Express.

My DPS(Digital Problem Solver) is an application that focuses on emotions and coping strategies using animated videos. It is a customizable app as well, allowing you to add your own pictures and coping techniques.

Features:

There are 8 feelings included in this app.

*Bored

*Happy

*Surprised

*Mad

*Annoyed

*Sad

*Frustrated

*Scared

There are four coping strategies.

*Use Positive Self-Talk

*Take Five Deep Breaths

*Take a Break to Calm Down

*Remind Myself to Keep Negative Thoughts In My Head

Using the app

Upon opening the app, you are taken to a main screen that includes a song about feelings as well as calming music. You simply touch the screen to start. You are then prompted to scroll through the app to choose a picture that shows how you feel. The animations are well done and there is text on each of the eight pictures describing the emotion. Once you choose the feeling, you are then directed to choose a coping strategy to calm down. You may choose from one of four strategies. When the coping strategy is chosen you are taken to a short animated video of a social scene depicting the character utilizing the coping mechanism. Written praise and verbal reinforcements are given at the end of each video.

To customize the app you simply press the plus sign on any page and you can take a picture or choose one from your camera roll. You can add your own pictures of feelings or coping strategies and include any text you want. You have the option to delete pictures as well.

 

 
My DPS
is a fantastic app that teaches valuable skills relating to emotions and coping strategies. This app is easy to use and customize to show a range of emotions. The animations and video quality are nicely done. The music is a nice touch as well. After reading my review, Marc Zimmerman,CEO-Founder of The Social Express, informed me that he wrote all of the music. You can find his songs on LimeGreen Limousine. A portion of all proceeds go to Autism Research.

Wishlist

It would be great to have spoken text for non readers. The pictures of emotions may be difficult to understand for those who struggle with recognizing emotions. Spoken text would also make it easier to select a coping strategy for those who can't read. It would also be nice to have the option to add video as well as pictures for the coping strategies.

Find The Social Express:
thesocialexpress.com
My DPS in iTunes
The Social Express on Facebook







 

 

Saturday, April 28, 2012

Tapikeo HD Review


Tapikeo HD
- Create with your Kids their Picture Book, Storyboard, Soundboard and Audio Flashcards by Jean-Eudes Lepelletier

Tapikeo HD is an open-ended app that allows you to create customized grids using images, sound and text for social stories, visual schedules, flashcards and much more. It can also be used as an inexpensive AAC app. Tapikeo HD just received a major update and offers a multitude of creative and engaging learning opportunities.

Features

Create personalized grids with up to 48 images with sound and captions.

Five demo grids are preloaded on this app with the option to download over 20 free ready-to-use grids. There are 5 in-app downloads available for .99 each that include an AAC starter pack, social story pack, animals, songs and a learning pack.

Import grids from the website
www.tapikeo.com for free. Save grids and export them to friends and family via email.

Safe mode which prevents user from deleting information from within grids or change settings.

Shake mode which allows user to find a picture within a grid related to sound.

Settings

Language: English/French

Sound Options: Play sounds in order or together

Active Picture: No change, large picture, large picture then downsize when sound ends

Shake Mode: enabled-press the shake button to hear a random sound, then find related picture.

Using the app

Upon opening Tapikeo HD you are taken to a page that has 16 pictures in a grid style setting. This is the play mode. There is a toolbar at the bottom of the page that has play, edit, grids and settings. The edit button allows you to make changes to the current grid. The grids button takes you to a page where you can change grids or create your own. The settings button enables you to change the features within that grid. The shake mode is also located on the page, unless you disable it within settings, which quizzes the user on sounds and pictures. The safety mode is found on the page as well. To lock you simply press once. To unlock you must rapidly press the lock button 5 times within one second. This feature makes it difficult for children(even I had difficulties) to unlock and change or delete anything within the grid. Functionality of each grid varies greatly as there are endless possibilities for potential uses.

In the Animal Sounds grid(demo grid included with purchase) there are 44 cells. Sixteen cells per page each featuring a picture of a different animal. In play mode you can simply touch a picture to hear the corresponding animal sound with the animal name printed below. To challenge the player you can press the shake button to hear the animal sound. The user then has to locate the correct animal that matches the sound. If correct animal is chosen a celebratory sound is given and a place on a caterpillar at the top of screen turns blue. If incorrect animal is chosen a buzzer sounds and the next place on caterpillar turns pink. Time/Score is also recorded during the shake mode to motivate the user to beat the previous score each time this grid is played. To repeat a sound you simply press the shake button.

Another demo grid provided is used as a social story for learning to wash your hands. When selected from the grid manager, you are taken a page with 16 cells. There are only 12 pictures for this particular social story so the other cells are left blank. The user is prompted, by flashing picture, to touch the first picture cell on the grid. That picture is enlarged and a recorded voice explains the first step in washing your hands. There are arrows that prompt changing to the next picture. Each picture has recorded voice as well as written words which is great for non readers.

Tapikeo HD has some amazing features and the ease of use is just one of the many benefits. There are many grids with each in-app purchase that cover a wide range of learning tools. Learning to brush your teeth, learning emotions, animal names and sight words are just a few examples of grids within the in-app packs. Creating new grids is simple and just requires some creativity and planning. In order to create your own grid all you need is a topic, some pictures and a plan of how you want to implement them within a grid. This app has so many different uses that it is impossible to list them all. It is a well thought out app that is well worth the price.

Wish List

Tapikeo HD just received a massive update. One of the things I would love to see in an update would be the ability to add video clips as well as pictures. The use of video modeling within a grid style system would be beneficial to teaching steps to those who have a hard time understanding inferences. Upon opening the app, I would like to be taken to the grid manager instead of the last grid or page used.

Find Tapikeo HD:
Tapikeo HD in iTunes
tapikeo.com
Tapikeo on Facebook






Friday, April 27, 2012

My Big Sister by Luke Lawson

My Big Sister by Luke Lawson
 Dressing up with my Big Sister
 Field Trips with my Big Sister
 Comforting my Big Sister at a Restuarant
 Playing at the park with my Big Sister
Coaxing my Big Sister to join me in the water


My Little Sister by Anna Grace Lawson

 My name is Anna Grace and I am 12 years old. I have a sister with Autism. I love her more than anything in the whole wide world; even when she can kind of be annoying. Sometimes, she asks, "What are we going to do after this? Mom, what are we going to after this?" over and over again. I answer sometimes for mom when she is too busy, like focusing on driving and when she is on the phone. But her routine is for mom to answer, not me. I feel like I can sometimes be invisible to her. Some days I think and wonder, "What is her life like in her point of view?Maybe someday I will figure out what goes through her mind when things happen to her.

Emily (my sister) is a really special girl who just has trouble expressing her feelings to people. She is really smart inside, but she doesn't show it because her mind works differently than others. She has to go to therapy. I know it helps her, but some days she has tantrums (as my mom calls them, meltdowns.). Everyone in the waiting room/lobby can hear her scream and cry while my mom goes to calm her down. I feel so embarrased to see people with a look on her face like, What is she crying about!?!?!? When she's done with therapy, it's just like NOTHING happened!

Having Emily as a sister can be a pain in the butt. But recently, I just finished reading a book called Al Capone Does My Shirts. It sort of made me think that I'm not the only girl in the world who has a sister with Autism. I'm really proud to have Emily as a sister because she is really sweet and caring and looks out for me.  She is so nice to everyone and I love her so much.

I love this blog that my mom writes because she tells about Emily's life and how to deal with kids who have Autism. It really speaks out to the world and to me it says "You're not alone". I can't wait to see all of the posts my mom will write in the future and hopefully I will be writing some too.
 -Anna Grace

Thursday, April 26, 2012

We're off to see the Wizard

This was it. This was going to be the year that Emily made great academic strides. I just new it.

We had our transition IEP in the spring, before Kindergarten started. I had some reservations about placing her in a regular ed inclusion class with more than 20 kids. However, I was reassured that she would be fine as there would be an aide in the classroom in case she needed assistance. The first few weeks of Kindergarten were great. While other kids were having to adjust to "big" school, Emily had somewhat of an advantage having been there the previous two years. There was not much academic pressure in those first few weeks. About a month into school, it started to go downhill. Classroom time became extremely difficult. Circle time created anxiety and she would disrupt the class. Transitions were a nightmare. She began spending more time in the resource room as her disruptive behaviors increased. A school based Autism consultant came in to observe and hypothesized the behaviors were attention seeking and task avoidance. Any academic work presented would cause her to throw pencils, paper, hit teachers and run from the room to avoid doing them. She was strapped into a chair for all academic work.  She still refused to do any of the work. After being strapped in the chair and ignored(because they hypothesized it was attention seeking behavior as well as task avoidance) she discovered she could get up and walk around with the chair attached to her bottom. It was at that point that the custodian of the school brought in some plywood and the chair was bolted to the floor so she could not move.  I will never forget the first time I saw it. I had no idea this was happening. I had never had to restrain Emily. This was something that I would not even do to my dog. This was torture for her. I walked into the school once and could hear her screaming from the resource room. I walked in as she was sitting in the chair attempting to do work. She immediately stopped when she saw me. Trying to get her to go to school every day was a nightmare. I would literally have to chase her to get her dressed. Once I got her in the car, she would stare blankly out the window. I hated sending her to school. It was also at that time that the school hired a psychologist(number 4) who worked for an Autism School to come evaluate Emily. I was told by a teacher the Autism diagnosis was doubted and Bipolar was suspected. Emily had just turned 6 years old. The psychologist observed Emily twice at school(since that was the environment where she was having the most difficulty). Scott and I met with her once after her observations. We were told that Emily was clearly on the spectrum. While she had tons of speech, it was mostly scripted. Emily was good at communicating her needs, however her speech was repetitive of things she had heard from movies and environment. She also repetitively asked questions. She would ask the same question over and over as a way of engaging in conversation. The psychologist gave the school many suggestions to help Emily improve while she worked on her written report. It was also noted that Emily needed a one-on-one aid. While Emily's behavior was still difficult, it was not unmanageable. Had it not been for the aid though she would not have lasted through Christmas. We went to Disney World over Christmas break. While most of Emily's behavior issues were related to school, aside from the anxiety, we could take her anywhere. Another indication that something in the school environment was not working for her.

We had an IEP meeting shortly after Christmas. Her aid was due to leave in a month. It was recommended that Emily be taken out of school and placed in a county run school for severe mentally, physically and emotionally disturbed children. I said NO! I begged them to let me come to school with her once again to be her aid. She could do it with the right support. I knew it. They said no. The next offer was a expensive private psychiatric day school which also housed inpatients. Knowing I would never send her there, to be open-minded and work with the school, I agreed to a tour. The preschool department was wonderful. It was cheery and the teachers looked pleasant. Unfortuantely because Emily was 6, she could not be placed in the preschool section. Even though developmentally she was on a 2-3 year old level. They wanted to place her in a classroom with all boys kindergarten through sixth grade where if she misbehaved she would be stripped of all articles of clothing that could be used to harm herself and placed in a padded room.  Here was my  40 pound 6 year old being placed with 12 and 13 year old boys who were mentally unstable. My 6 year old who had NEVER been a threat to herself or anyone else! I said NO and went immediately home and scheduled an appointment with my pediatrician to get her advice. She wrote a letter to the school, stating that those types of facilities were not proper placement for a child like Emily. She was still refusing to do work, so we decided to reduce her days at school. I asked for all academic work to be sent home for me to do with her. Work that she refused to do at school, she would sit for an entire hour and do for me. I even took video of the footage to send to school. We also finally got the report back from the psychologist who had evaluated her in the fall. We had been asking for it for months. I was told on a Friday by the special ed teacher that the report was in her hand and she was taking it home to review over the weekend and I could pick it up on Monday. When I went to pick it up on Monday, I was told that the psychologist had been by to pick up the report so that she could amend some things. Suspicious, but still excited to have the report, I waited. When I got the report I was shocked. It had all of the things she had disscussed with us, but there was something that was NOT mentioned in our meetings. She could not "rule out the possibilty of a mood disorder" and she felt Emily would benefit from specialized placement. I called the psychologist and questioned her. She asked if I was suggesting she changed the report. I said YES!  It was also during that time that Emily had her 6 month neurologist appointment. He also was appalled that this placement was being offered and wrote a letter to the school stating ways that they should help Emily within the school. We also discussed medication options again. I relented to trying Risperdal. The medication I had fought for two years. I felt like I had failed my child. I felt like the school had failed her. Doctors had failed my child.  So I medicated her. Lowest point in my life. I was glad that she was not at school a full day so I could monitor her closely on the medication. We decided to tell very few people so that we could get a true feeling if this medication was helping. Almost instantly I saw a difference. She wasn't the Emily I had known for 6 years. People started commenting on how different and calm she seemed. She was not having as many tantrums and meltdowns. The way she looked at things was as if she were actually focusing and seeing them. However, the medicine was not a cure to her Autism. It only masked it. But because it was making a difference, I kept her on it.  We had our IEP that spring and decided that she would repeat kindergarten. She would be placed in the same class with the same teacher. She finished out the rest of the year with little to no issues and the school paid for summer services to keep her in a routine.

School started back in fall with Emily going all day. It was good for a month until it was deja vu. I was not going to wait around this time. More IEP meetings were called and it was agreed since I refused the offer of alternative schools, that she would be serviced at home. A special ed teacher, general ed teacher and OT would come to my house. She would only go to school for specials and speech. This was perfect. Because of the previous years events, I contacted ADAP(Alabama Disabilities Advocacy Program) to ensure taking her out of school was the right thing for Emily. I was told that since the school seemed to be working with me, that for Emily it was the right thing to do. It was an adjustment for Emily to have to do a few hours of work everyday. She was at home in her comfortable environment, but the academics were still hard. She had to learn two new teachers and it was difficult for me not to step in whenever she balked at doing work. It was not a fix for her behavior. I decided to take her to another psychiatrist(number 5) to try and get some suggestions. I was not seeing the same results on the Risperdal as I did in the first 3 months. I really wanted her off of it. This psychiatrist recommended Zoloft to help with her OCD behaviors. It couldn't be worse than the Risperdal so we started it. This would be a medical nightmare for Emily. Because we couldn't take her off the Risperdal straight away, we decreased the dose and started a low dose of the zoloft. The first two weeks were great, but when we increased the Zoloft all hell broke loose. She was SICK. She would writhe and moan on the floor in pain. I called the Dr and was told that she just needed to adjust and this could take a few weeks. She became WILD. Not like anything I had ever seen. If she were older I would have said she was suicidal. I was told to take her to the hospital and leave her if I was concerned. She was 7 and there was NO way I was dropping her off at a hospital. After several attempts to get something done(because I didn't just want to take her off of the zoloft cold turkey), we finally got her back on the Risperdal only. It took two months for her to get back to "normal". We were advised to make any medication changes during the summer since she was so sensitive. This was the child who had literally climbed the walls after she was given medication to sedate her prior to having her tonsils out. The pain medication she was given after the tonsillectomy made her throw up. Benadryl made her fall asleep standing up. She was highly senstive to meds. Needless to say the academic work during the first few months of homebound services was a bust. Because of the ill effects, her time at school had decreased. She was only going for speech and pe and I stayed with her. She was getting nothing out of it. At that point the school decided to pay for ANOTHER psychologist(number 6) to give us some help in getting her back in school. This one said again she had an Autism Spectrum disorder and there were many ways the school could help her be successful. He offered a list and said he was willing to come into the schools to set it up. For a price of course. This was obviously not the solution the school system was looking for. We met for our annual IEP and I was told that it was in Emily's best interest for her not to return to the Elementary school she had been at for 4 years. THEY WERE KICKING HER OUT OF PUBLIC SCHOOL. I was extremely hurt, but at the same time relieved. I hated sending her knowing the anxiety it caused her. How could she have loved it in preschool and despised it two years in Kindergarten? I was again offered the county school for severely disabled children. Out of options at this point, I agreed to a tour. I was not impressed to say the least. They wanted to place her on a hall with emotionally disturbed kids. She was too high functioning to be placed with other kids on the spectrum. This was all they could offer me. My child who mimics people, being placed with kids who had behavior twice as bad as hers. I saw nothing good from that and said no. The school also wanted to pay for ANOTHER evalution of her over the summer with a neuropsychologist(number 7). At this point I knew they were doctor shopping and not really interested in helping my child. They had been told repeatedly by several different professionals that she had an Autism Spectrum Diagnosis and ways that she should be taught. It was not easy teaching Emily. It was not easy dealing with her behaviors, but I had done it for 7 years and it WAS manageable. In defense of the teachers they did what they thought was right for Emily. I agreed to the evaulation, because it was free and I HOPED that at this point the school would get it. Plus this was a throrough evaluation. They would also be doing an IQ test on her. I was sure to get some answers to questions I had as well.

Emily received summer services again, but this time it was from her homebound teachers. It was decided that if Emily were to transition out of the house, summer school needed to be somewhere outside of the home. I had hoped it would be at another elementary school within the county. It was where I thought she would go since I had said no the the only other option. I was told that the only school open all summer would be the school I had said no to. The county offices were in the same building and people would be there all summer. Plus they had access to the sensory room, gym, etc. Having no choice I said ok. There was a two week break before school started. We had the Neuropych evalution and he had given us a preliminary report based on his observations. He said that she most definately had an Autism Spectrum Disorder as well as anxiety, OCD and SPD. Because I had known after the first psychologist the school paid for, that they were looking for an emotionally disturbed diagnosis, I questioned every single doctor we saw and asked if she could be Bipolar, emotionally disturbed, schizophrenic, etc. If she was, I wanted to know for her sake. He explained to me in detail that a better explanation for her behavior was Tourette's. Emily did not have the typical Tourette symptoms of shouting profanities or noticeable movements. Hers were subtle and what we had chalked up to OCD or Stims in the past. She would go for months doing the same repetitve thing. Even back her first year of Kindergarten she had the most annoying habit if making odd sounds with her mouth/throat. Her special ed teacher even commented once that it was almost like she had Tourette's. Kids with Tourette's often had challenging behaviors. I felt relieved to know that this was IT. I was not taking her anywhere else to be poked, prodded, studied, or observed. She was Emily and there was NOTHING anyone could do to change her. We had to figure out a way to help her nagivate this world that was foreign to her. Not make her change to fit our standards of what she should be doing.

I started calling the school system 2 weeks before school was to start to try and figure out where Emily would be placed. I could not get anyone to call me back. 4 days before school was to start and there was no return phone call or a plan in place for Emily. Fed up I called ADAP back and explained in detail what had happened. They told me to immediately type a letter and deliver it to the previous school and county department of education telling them the Emily's IEP said she was to get services at her zoned school and since I had not received anything stating different she would be there the day school started. They also asked for my permission to request ALL records from the school pertaining to Emily. This was unacceptable. I had a call from the board of education that afternoon telling me that the homebound teachers(who had made other plans) would be returning to my house to service Emily until we could schedule an IEP. I remained in constant contact with ADAP who told me that Emily needed to be in her least restrictive environment and home was not it. When we had our IEP meeting, the Linda Nolen Learning Center was offered once again. It would be a temporary placement. The goal was to get her behavior under control while getting her adjusted to a school environment. She would start slow and gradually increase her days. After just a few short weeks, I was impressed. As much as I hated to admit it, I really liked it. The teachers at this school LOVED their jobs. They loved the kids. Emily seemed to transition well. There were field trips that she was included on without it being mandatory that I went to watch her. Although I have always gone on all field trips for my kids. Swimming field trips!  What kid would not want to go to school here? This was a school for special needs kids and it was the first time in 4 years that I felt like Emily was actually included. I could not sing enough praises about it.

ADAP had been in regular contact with me to make sure things were going well for Emily. They had received all records from the school(this was a MOUND of paperwork from 4 years) and were appalled at the treatment Emily had received. They requested my permission to send the records to an outside Attorney for review. They only handled cases that could be settled without mediation. This was clearly a case that required further investigation. This would not cost us anything. A special education attorney met with us after reviewing the documents. He wanted us to file due process against the school system to get compensation for the lack of services Emily did not receive while she was at the elementary school as well as have her placed in an appropriate school setting with the proper tools for success.  For many reasons I said no. I had so much to consider. Would my son who was only 3 at the time be treated differently when he became school age if we proceeded? How would it affect the current school Emily was placed? I did not want them to be held accountable for any of the previous schools actions. Did I really want Emily placed back into another elementary school that would most likely not be willing or able to handle her? Sure I knew what the law required the school system to provid, but I also needed to think about Emily's well being. What was best for HER? I knew that she needed to be around typical kids, but she had two siblings and we lived in a neighborhood with lots of kids her age. We went out regularly. I wasn't as much concerned with the social aspect as I was with  her learning new skills that would benefit her later in life. This was the school that would do that.

Emily has been at the LNLC for two years now. I am not sure when or if she will ever be transtioned back to a regular school. In all honesty I am not sure I would want her to be transitioned out. If such a time comes, my first choice will be homeschool. Linda Nolen Learning Center is addressing all of the goals that are in her IEP. While I would love to see Emily's academic progress soar, the results of her verbal and non verbal IQ tests have her placed in a Moderate mental deficient range. Even with further testing, which will happen in another 2 years, they do not expect her to ever get above the deficient range. I am ok with this and will continue to push Emily in ALL areas of academics, but my focus on making her learn on a level that her typical peers is on has shifted. I want Emily yo be the best SHE can be. And I want her to be happy. Right now she is doing great and at 9 years old she has matured further than I could have ever imagined. I am SO proud of her.

Thanks for reading!


Sunday, April 15, 2012

Follow the Yellow Brick Road

After Emily was diagnosed we immediately set up a meeting with the local school system to have them test her as well and find out what services she would receive. As much as the previous 3 almost 4 years had been a struggle, I could finally see the light. My oldest was in private kindergarten and I was struggling with the decision to send her to public school for first grade. After finding out that Emily would receive services at the same school, I felt it was a message from God. Anna Grace and Emily both at the same school. They recommended Emily go 5 days a week. All day. I was taken aback. Did she really need to go full time? She was not yet 4. I wasn't looking for a babysitter. I resisted their recommendations and we agreed to 4 half days a week. She would receive speech and OT at school. Surely she would "catch up" in no time. I was still in a bit of the denial/overwhelmed phase where I just knew she would outgrow it with all of the therapy. We were on the Yellow Brick Road to recovery. So I thought.

She was placed in an inclusion class with 8 kids, one teacher and two aides. I could not have been more pleased with the environment. She loved school. Her days were not always great and anxiety was still really bad. She refused to do much, if any, academic work. She still could not grasp the concept of learning. However, she got acclimated in the big school and that was reassuring. We decided not to push her on the academics(it was just preschool) and focus on sitting for circle time, transitioning, etc. I had people come up to me and ask if I was sure she had any type of disability, because they would see her in the halls doing wonderful. She was a social butterfly when it came to adults.

They gave me a list of resources when Emily was diagnosed. Making an appointment with a Neurologist was the first thing I did. After all, I had already seen two psychologists and they were not really of any help to me. We waited over an hour for the Neurologist to come into the room. He asked Emily a few questions, said she had Aspergers and tried to write me a prescription for some medication. All within 15 minutes. I was shocked. Could NO ONE give me some ideas to help ease her daily life? I had been ignored the first 4 years and now I was being told to medicate my 4 year old with an antipsychotic medication. I also had strong questions about his diagnosis. I was told by the evaluating team at Mitchell's Place that while she was somewhere on the spectrum, she most definitely did not have aspergers based on her intelligence. Here was a neurologist telling me something different based on the fact that she was verbal. I refused the medication and walked out feeling let down by the medical field AGAIN. I still had no idea how to help my child. The school was doing amazing work with her, but the anxiety was horrific.

Over the Christmas break I decided to take her to a psychiatrist. He seemed very interested in Emily and the fact that her anxiety was so intense. I thought maybe, just maybe this was my ticket to help her. I was instructed to keep a two week journal of all behaviors and report back to him. When we met back with him in January, I was proud to show him the detailed journal. However, he told me that he did not need to see it and handed me a prescription for an anti-depressant. Shocked,7 months pregnant and exhausted, I just took the prescription and said we would make a follow up appointment. I immediately called my pharmacy when we got home and requested information on Risperdal and the SSRI the psychiatrist recommended. No way was I blindly medicating a four year old. I didn't want to mask the problem, I wanted a solution. She was still pulling her hair and refused to be buckled in a car seat. Another issue that I had been battling since transitioning her to a bigger car seat the summer before. During the midst of all of the reading and searching for answers, my blood pressure became dangerously high and I had to deliver my third child 6 weeks early. It was all I could do just to get through each day with 3 children.

I had been reading "The Autism Sourcebook" and had learned some really useful information. ABA therapy was mentioned as a scientific method to helping kids on the spectrum. They suggested 40 hours a week. There was no way we could afford 40 hours as our insurance did not cover it, so we started less than 10 hours a week of ABA that summer. I thought it was good to have something to fill in the break from school. ABA was a huge help. After almost a year of refusing(kicking, screaming, pulling hair, unbuckling,etc) to be buckled in a car seat, the therapist was successful in getting her to buckle again in a short amount of time. I owed her my life. Our lives. I had been called everything but an unfit mother because she was not buckled in a car seat. When school started back the following year, we decided to keep the half days and continue with ABA in the afternoons.

I really thought this next school year was going to be wonderful. She was in the same preschool class with the same teachers and several of the same friends. However, learning was still difficult for her. It created so much anxiety just by asking her to do simple activities. More focus was placed on the transitions and social interactions and lessening her anxiety. She LOVED going to school. She would ask every day if she could stay for nap time. The teachers were wonderful with her, but there was nothing anyone could do for her anxiety. In February of that school year we had our regular six month appointment with the neurologist. He again offered us Risperdal to help her with the debilitating behaviors associated with the anxiety and autism. I again refused. She was only 5. He offered us Buspar as an alternative. It was an anti anxiety medication with few side effects and was non habit forming. It seemed like something that she could benefit from so we tried it. It did lessen her hair pulling and for that I was grateful. However, it was not a cure for her autism, nor did it make her anxiety disappear completely. But because I did see some improvements, we kept her on it. She finished the school year out with little to no improvements academically and still no pattern to her behaviors. We had a transition meeting for Kindergarten before school was out. She would attend the same school and would be placed in a regular Kindergarten inclusion class. My baby was going to Kindergarten!

Tuesday, April 3, 2012

Emily's Journey Somewhere Over the Spectrum

Emily Elizabeth Lawson was born September 3, 2002. From the moment she was born I knew something was different with her. She cried so much and didn't seem as affectionate and cuddly as a baby should be. She met all of her developmental milestones. However, there were things that my mother's instinct told me to question. Before her first birthday, I took her to an opthamologist. The way she looked at things was odd.  She would stare at a board book in a manner that that struck me as strange. It was as if she were looking at the pictures but not really seeing them. All vision tests came back "normal", but I was told she could be nearsighted which didn't surprise me with our family history. She had horrible separation anxiety before she was a year old. I could not leave her sight. I was also told this was "normal". She was so difficult to get to sleep. I would rock, pat her back to get her to sleep, but the instant I stopped she was awake. For hours. She also had a strange habit of picking her eyelashes when she was going to sleep. She had a thing for strings. Carpet fibers, loose hair on the floor, my throw pillows. Anything that was stringy, she would put in her mouth along with every other possible non edible item. I was told this was "normal". Babies put EVERYTHING in their mouths. Right? Another indication to me that something was not "normal".

At the age of two, things really started to become apparent to me. Again I questioned them. She was not learning things that I knew she should know. As a stay at home mom, I prided myself on reading to my kids and educating them at an early age. By the age of two, she did not know colors, numbers or letters. At her two year old check up I asked the pediatrician who reassured me this was "normal" and that I should not "expect my second child to be as smart as my first child". I knew this was not right, but since a professional was telling me this, it must be true. Right? At the age of two, I transitioned her to a toddler bed. I thought she handled it very well. I was able to put her in the bed and close the door and she never made a sound. After 2 years of virtually no sleep, I welcomed this. As soon as she turned two, she started a Mother's Day Out program once a week and I enrolled her in gymnastics. She would do forward rolls everywhere. A month into gymnastics, I noticed a bald spot on the top of her head. Thinking it was just from too many flips I pushed it aside. A week after I noticed the tiny bald spot, I went to wake her up one morning and found clumps of hair in her bed.  I was horrified. I called the pediatrician and asked if I should be alarmed. I was told to monitor her closely to see if it was from gymnastics. I decided to watch her sleep the next night. As I put her to sleep, I sat outside her room with the door open. What I saw broke my heart. She was pulling her own hair out of her head. Why? Why would a TWO YEAR OLD do this? I called the pediatrician again the next day and asked for help. They referred me to a child psychologist and said that in the meantime I should stop her from doing it and offered me splints to put on her arms at night, so she could not reach her hair. Refusing to subject my child to an uncomfortable sleeping arrangement, I started sleeping with her. In a weeks time, she went from pulling her hair just at night, to all throughout the day. I finally had my appointment with the psychologist. She wanted to meet with me prior to seeing Emily. I was excited to FINALLY have someone  help me with all of the questions and concerns I had.  I spoke in detail about Emily's first two years. I wanted her to hear it all. I wanted help for my baby. Her conclusion after all of the information I presented, was that it was simply "behavioral" and "she would outgrow it". Nothing else. No suggestions, no follow up, no wanting to see Emily to evaluate her. I was shocked and angry, but thought...this is a professional telling me this so it must be true. Right?

When Emily turned 3 we tried Mother's Day Out again. I signed her up for two days a week thinking that the additional day would give her more security in that environment. I also knew that she needed the separation from me. She was still struggling with separation anxiety. Since I was sleeping with her at night, she was very dependant on me. I tried to avoid stressful situations with her to prevent another round of intense hair pulling. She was the oldest kid in her class by months. It became apparent to me how far behind her peers she was. She was able to speak clearly but could not retain any information. She still did not know her colors, numbers, letters, etc. I was still told this was "normal" and I should not worry about it. She preferred to play by herself at school. She did not follow directions well and resisted change. This was chalked up to bad behavior and defiance again. I was told it was "normal" to have one of your children be a model student and the other be the rebellious one. This was another professional(teacher) telling me it was ok, so I should not be worried. Right?

A few months after she turned 3, I had more concerns with her vision. Whenever we were in a crowd, she would say "Where's mommy". I could be right beside her and she would ask. It was like she could not find me in a crowd. She would stare out the window for hours and say "Who is that?" There would be no one out there. Her depth perception was really bad too. She would not walk on the lowest balance beam at gymnastics without being paralyzed with fear. It was a foot off the floor. I again made an appointment with an opthamologist. Her behavior was really difficult at this time. She would scream and cry over the smallest things and I would have a hard time telling her no. But other times she would be off by herself just laughing and giggling. There was no in between with her. She was uncooperative getting her eyes dialated and they were not able to perform an exam. The Dr mentioned face blindness as a possibility. That was something new that had just come out so there was not much info about it. Walking out of the office even more lost than before, I just continued to get through each day. I was honestly exhausted dealing with her behaviors as well as having a 5 year old.

Anxiety struck again with a vengeance at 3 and a half. She had stranger anxiety which was common for kids at that age. However her anxiety was severe and was related to mostly to men. There were two men she was not scared of. Her daddy and a neighbor. If any other neighbor were outside, she would refuse to go play. If we pulled up to a drive thru and she heard a male voice through the speaker she freaked out. It became so debilitating for her that it made outings almost impossible. Checking out at the grocery store one time a bag boy came to bag our groceries. She immediately clung to me and I politely told him that I could do it. The check out lady stared at me. I just smiled and told her that she had a fear of men. I will never forget the words that came from her mouth. "Has she ever been abused?" I told her no and walked out of the store crying my eyes out. It had never crossed my mind that someone would think that. I was devastated and again depleted.

Our lives were affected by something that no one could define for me. Not one professional had offered me any help or advice in dealing with Emily. I felt so alone. We couldn't go out with friends anymore and our life became one of sheer survival. My marriage was suffering as a result. I felt like I was dealing with it all by myself. Why wouldn't someone help me? Help my child. I was screaming inside while Emily screamed for hours some days. After the grocery store incident, I once again called my pediatrician and begged for help. She would not return my calls. Fed up, I contacted another physician and asked to transfer my charts. After the pediatrician found out I was leaving, she called me on a Friday night to talk. I told her I had been asking her for years to help me. She said for me to take Emily again to a child psychologist. I had no faith in the professional or medical field at this point, but I agreed to seeing another psychologist. A few weeks before the appointment, I found out I was pregnant for the third time. I was desperate to get her help before I had another child.

Three weeks later we walked into the office with Emily. They wanted to see her. I had a small glimmer of hope. This psychologist was sweet and caring. She observed Emily play alone. She observed her playing with me. She listened to my concerns of what if the noise of a new baby was too much for her and she hit him. She calmly looked at us and said, "I am not an expert in the field, but I suspect PDD". I clearly remember Scott and I looking at each other. I had never heard of it before, but she gave us a quick run down. Emily seemed to fit into that category although I wasn't 100 percent certain. She told us to have her evaluated at Mitchell's Place. A private facility that specialized in Autism Spectrum Disorders. Having no knowledge of them I decided to contact UAB as well. I knew their evaluations were thorough but there was a 6 month wait. I couldn't wait that long. Mitchell's Place had a few spots open, although our insurance would not pay for it all. Biting the bullet we went to Mitchell's Place for a battery of evaluations. At the age of 3, two months shy of her 4th birthday, she was diagnosed with PDD-NOS, generalized anxiety, trichotillimania, speech and fine motor delays. She would need help. Lots of help.There were so many suggestions. Neurologists, therapists, speech and language pathologists. I walked out feeling overwhelmed, but relieved. I walked out feeling angry and bitter at all of the missed signs. WHY had no one in almost 4 years seen this or listened to my concerns? I walked out feeling like a failure as a mother that I didn't make someone do something sooner. A few weeks later she was evaluated by the local school system and started immediately in a program at the elementary school where she would receive help for her diagnosis.

And so began our journey down the yellow brick road...

Thanks for reading,
Jessica

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