I'm not even going to go through all of what happened... I'll just post my letter to the Supervisor of Library Services for Seminole County... *sigh
To Whom it May Concern,
I left the East Branch Library in Oviedo fighting back tears today.
My mother and I took my three children to the library to check out some books for school. The children, including Aiden, sat quietly in the children’s section reading and playing with blocks for abut 30 minutes while I researched and gathered the books we needed. As I was getting ready to check the books out, Aiden came galloping over to me, with the other two in toe. I let them know that we do not run in a library and that we were checking out and to go stand by ‘grand-ma’ until check-out was complete.
Aiden’s autism causes various social, emotional, and behavioral issues, not the least of which is that he has little concept of appropriate times to be quiet or why in the world we would be expected to NOT run somewhere, that combined with that he has a literal adult size strength to him makes for a very physically difficult task when it comes to quickly removing him from a situation where he is disrupting others peace or quiet.
Sadly and obviously at the library today, Aiden had hit his “nice quiet time” saturation point and went running, while loudly making noises down an aisle. I told the woman checking me out that my son has autism and he is about to have a meltdown, she said we owed 20 cents, I walked over to my mother and got 20 cents. My mother went to try to coax Aiden into peacefully leaving the library, I went to deposit the 20 cents and retrieve the books. The older two children, who know this routine, went to wait in the library lobby. My mother and I ended up in front of the reference desk, each of us holding one of Aiden’s arms and trying to calm him while at the same time trying to move toward the door.
There were two employees at the reference desk, a man with glasses, and a middle-ages woman with brownish hair. (sorry I can’t be more descriptive, I was paying attention to Aiden)
The woman at the reference desk turned to the man and said something to the extent of “hmm, this is not a children’s playground”, as if I had somehow mistaken the library for a place where I should go to let my special needs child have free reign. It was just so hurtful to know that in this day and age an employee of a county facility like this would not be able to think beyond the behavioral into the realm of that there may be something wrong here. Where did giving your fellow man the benefit of the doubt go? Of COURSE we do not want to disrupt the peacefulness of the library and OF COURSE we feel awful about having done so, but to so passive aggressively belittle us was just uncalled for. This woman only experienced one moment of Aiden’s life and felt the need to make a harsh judgment, one that she felt strongly enough about that she felt a comment should be said out loud. Imagine OUR lives, we live with this disability every day. I just ask for your staff to be more compassionate. I am truly sorry if my son and his diagnosis interrupted the routine for 10 minutes or so, but in the long run, accommodating and tolerating a child like this should be acceptable.
Thank you for taking the time to read this. I truly hope that in the future Aiden will be welcomed in the library, I believe that he deserves the same opportunity to use this great public service as the rest of the population has.
Sincerely,
Mary Brophy
Friday, May 8, 2009
Monday, May 4, 2009
Don't run in the gallery...
Well- My wonderful little God-daughter Taylor got manhandled in an art gallery today. The woman working there didn't like that Taylor ran from Theresa and was jogging back and forth so she took it upon herself to completely disregard that Taylor's parent was right there and take control of the situation herself! Apparently the women put her hands on Taylor and sort of moved/dragged her back toward Theresa. Knowing Taylor I am SURE she did not enjoy a stranger grabbing or directing her. It just boggles my mind that this woman would not have just said to Theresa "I'm sorry, I'd rather not have her running in the store please".. I mean- THAT would have horrified Theresa enough, but to bypass the parent and go touch a child you have never met before!!?? Very honestly Theresa COULD have filed a report. I JUST saw a news story the other day where a mom filed a report against a man at the park for touching her sons elbow! The point is... who knows what a strangers motives are? MAYBE you are trying to protect your paintings, but MAYBE you are a bad person and you want to touch my child!? I would think that we should ALWAYS err on the side of caution here and NOT touch anyone else's child without permission in situations like these.
The ONLY reason I would want a stranger touching ANY of my children would be in a life or death dangerous situation, then of course, but in a situation where you, the stranger, just think a child needs better or different discipline, absolutely not. Stay away. You talk to ME, the parent, never the child, and NEVER touching.
UG.
The ONLY reason I would want a stranger touching ANY of my children would be in a life or death dangerous situation, then of course, but in a situation where you, the stranger, just think a child needs better or different discipline, absolutely not. Stay away. You talk to ME, the parent, never the child, and NEVER touching.
UG.
Sunday, May 3, 2009
Flood the world with hope!
Went to church this morning, afterward there was a courtyard breakfast to introduce people to the Children's Ministry, then straight to the mall for a quick lunch, spanakopita, yummmm, then to Dale's house to help her unclog a sink, then home to wait for Calli to come get Jonny to hang out today, then to the Altamonte Mall with Taylor Wissner, Skye, Nicole, and Jo. Shopped for Mother's Day. It's much harder than you would think. I debated for 20 minutes on whether or not to buy my sister-in-law Leslee a bracelet for mothers day that was made from these strange looking colored stones- supposedly protective "eyes"... I figure it can't hurt to have all the protection you can get... in the end I decided the stones looked too much like weird little eyeballs and didn't take them home....I decided to pray for her instead... and I mean I really prayed... I asked God as passionately as I ever have to keep her safe and keep her belly warm and ready... to guide the doctors hands and to steady her world for just long enough for a baby to settle in... then I got some little gifts for my mom and Nicole and headed home.
Saturday.... In the park....
Saturday was crazy.
Free comic book day with Papa for the kids, which led straight into the Cubscouts Family Fest, which led straight into a park day, which ended up being TWO different parks in a row, which led straight into a date night for Brian and I with grandma watching the kiddos, which landed me in the theater seeing WOLVERINE! Whew!
PLUS-Skye had her friend Taylor spend the night, my favorite little friend of hers!
Free comic book day with Papa for the kids, which led straight into the Cubscouts Family Fest, which led straight into a park day, which ended up being TWO different parks in a row, which led straight into a date night for Brian and I with grandma watching the kiddos, which landed me in the theater seeing WOLVERINE! Whew!
PLUS-Skye had her friend Taylor spend the night, my favorite little friend of hers!
Friday, May 1, 2009
Funny Aiden
"Mommy.... your legs are so spiiicy!" (after rubbing his hand up and down my leg!)
"Mommy- My run is out...." (*panting* after running at the park)
10 minutes later
"Hey Mommy! My run is back, my run is back!!"
"Mommy, I wub you and I wub to wick wolwipops and drink wemonade!" (practicing our L's instead of W's!!)
.
.
"Mommy- My run is out...." (*panting* after running at the park)
10 minutes later
"Hey Mommy! My run is back, my run is back!!"
"Mommy, I wub you and I wub to wick wolwipops and drink wemonade!" (practicing our L's instead of W's!!)
.
.
A year in review...
I haven't been a good blogger, but I am hoping to be in the future.
Between my first few posts and now, our world has changed more intensely than I could possibly realistically explain.
Aiden WAS diagnosed PDD-NOS with ADHD, Sensory Processing Disorder/Sensory Integration Dysfunction.
Aiden is now completely Gluten and Casein free (as of February 2008- looking back- he was GFCF for about 2 months before he started his ABA) and mostly soy and high fructose corn syrup free. Aiden was evaluated first at a Developmental Health Fair and then through the Seminole County School System in Mid-March 2008. Our good friend Alice had also met with us and given us her very honest opinion of that Aiden WOULD fit under an Autism Spectrum diagnosis. We ended up going to see geneticist, Dr Patricia Wheeler several times,as well as various other doctors.
We spent a lot of time last year (2008) with some wonderful speech and language and occupational therapists, the best of which where Ms Diane and Mr Daniel, who came to our home every week and worked one on one with Aiden. We have also been in intensive ABA (Behavioral Therapy) for a year now.(First Official Day of therapy was May 7th of last year- Aiden was originally to begin ABA on April 1st but insurance was a ruckus and it was pushed back!!) Ms. Chrystin, Ms Jessica, Ms Tatiana, Ms Crystal, and Ms Jennifer are just some of the wonderful behavioral therapists Aiden has worked with.
I am overwhelmed just sitting here writing the names of those who have helped us. Aiden is a changed child. He is talking and interacting and laughing and hugging. He is interested and inquisitive and loves to tells jokes and read stories. A year ago Aiden tested at NO social interaction with peers. He tested at a 10 month old level for speech and language, NOW, he is testing at a 4 year old level and has FRIENDS!!!!
Aiden is closely monitored by his doctors. He receives 2 EEG's a year and has undergone one MRI looking for seizure activity. His EEG's are abnormal in the left focal area, which puts him in a "high risk" category for seizures yet he hasn't actually HAD a confirmed seizure and he MAY never. We just have to watch him and report and abnormal or seizure like activity.
Aiden is also receiving an Autism Service Dog in December of this year!! We are VERY excited to welcome this new family member!! Really, I could go on about the service dog for pages, so maybe I'll save it for another post!
Our family are now a part of the S.E.P.T.A., The Autism Society of Orlando, C.A.R.D, Nathaniels Hope, and many other wonderful community organizations that help to gather and give information to all those families in need. We also regularly shop at Whole Foods in Winter Park and the Liberty Bakery in Oviedo! If you would like information on any of these organization please contact me!
SO- Here we are a year later and this time hopefully I can keep up with blogging a little!
I'll start with the past two weeks or so.....
Monday April 20th
I kept Aiden home from everything today. He has been really congested. I always try to just play it safe with him.
Tuesday April 21st-
Today Ms Jessica from the Florida Autism Center where Aiden goes to therapy came to the house to have an 'at home' day with Aiden. I'd say he did well in that he let her in the door AND showed her his room!! There were a few little snags, but all in all the day went well!
Thursday April 23rd-
Our beautiful neighbor Merriam passed away today. Merriam was a great friend to me in the short time that I spent with her. She shared stories about raising children, losing children, and coping with the world when it tells you something isn't right with your children. She was warm and truly loving and will be deeply missed.
Aiden had a long day a therapy today. We learned that one of his therapists, Ms Tatiana, will be leaving soon to go work in Tampa. Tatiana has been with Aiden for almost a year now. It's sad. =(
Friday April 24th-
My little Lily came over and stayed the weekend, Melissa was walking the Cancer Relay for Life, which I thought was awesome! Anna and I just went up to Tallahassee a few weeks ago and walked the relay at FSU in honor of our friend Kirk and my grandmother, who recently passed away. It's a great cause and it makes me feel strong to be around people who are willing to help by participating in these events! Friday was also Jonny's Founders Day at school. We all went and had a lot of fun! Bounce houses, auctions, water balloons, all of that great stuff!
After Founders Day we went over to Merriam's house and spent some time with Merriams daughter and husband. I couldn't keep from crying. I shared my story of how I met Merriam- when she locked herself out of the house in her nightgown and had to come use my phone! =)
Sunday April 26th-
Grandma took Jonny and Skye to church this morning for Sunday school! Aiden did NOT want to go today. He repeated that he "just wanted to stay home" about 100 times!
Monday April 27th-
Jonny had Cubscouts today! He is REALLY enjoying his den, he talks about their activities all the time.
Tuesday April 28th-
Lily came over this morning. Aiden had a long therapy session after school this morning so Skye and I used the time to go to the Morse Museum. We have been studying Louis Comfort Tiffany for our "month of April" artist and this museum is just BRIMMING with Tiffany artwork! http://www.morsemuseum.org
We also finished the Trumpet of the Swan by E.B. White! Skye successfully finished both of her April books!! Yaay. The first book was Anne of Green Gables!
I regrettably missed the Northland Near Him Home Educators meeting tonight! I REALLY wanted to go, but time just got the best of me!
Wednesday April 29th-
Called Theresa this morning just as she was getting ready to take Taylor in to Arnold Palmer for an overnight EEG. Taylor has been having more frequent seizures and has been having trouble with her eyes lately. I dropped Skye off at Woody's and then took Jonny and Aiden up to the hospital to visit. Taylor was being as sweet as ever. She was super happy to see us which felt good =) We ran into Cheryl at the gift shop at the hospital, one of the mom's of a boy in Jonny's cubscouts! She was there having some tests done on one of her sons. It's amazing to me at this point how many nurses, doctors, and mothers I know at Arnold Palmer...
I got a call from Evans Elementary today wanting to set up the first IEP meeting for Aiden to discuss his schedule for next year. Aiden will be moving from his all VE (ESE) class to a half day typical/half day special needs class. We are VERY excited to see how he does! I think we are set for May 18th to nail down the IEP.
Tonight was my first SEPTA event! (Special Education PTA) Brian and I took Jonny and Aiden with us. Aiden was surprised to see Ms. Jessica there from the Florida Autism Center! We got a lot of information, it was definitely worth going. (Even though we had to miss a weight watchers meeting AND a bible study to get there!!)
Skye spent the night at Woody's tonight! He took her to Chuck E Cheese, when I called she sounded like she was having an awesome time!
Thursday April 30th-
Taylor is out of the hospital. The doctor says she had 12 seizures during the testing. The medications she has been on are not working so they are going to try some new, more "adult" meds. I think there was some concern about how little Tay is and if her body can handle these medications and still allow her to have an appetite and gain weight.
Today was a long therapy day and Ms. Tatiana's last day. Aiden and I made her a card and took some pictures. It broke my heart that Aiden wouldn't give her a hug to say good-bye. I cried for 10 minutes in the car. I hate having to let the therapists go.
Jonny and Skye both had their annual physical today. Skye is little.. only the 9th percentile for height and I think the 10th for weight. No shots- which she was SUPER thrilled about. Jonny got a little lecture about eating right and has been referred out for metabolic blood work and to a neurologist. His doctor had been working hard for the last several months to get Jonny into a developmental pediatricians office to be evaluated. She feels that he is a likely candidate for Aspergers Syndrome. I always point out that I don't think Jonny would have ever been looked at if Aiden had not been diagnosed, but now that we have really researched we DO agree that he fits under the criteria and Jonny could definitely benefit from the types of "social skills therapy" the doctor is recommending. She is sending Jonny to the neuro mostly because she can't get the insurance to cooperate and cover a developmental in our county. Insurance is the bane of my existence.
On a lighter note- I got to go have some yummy veggie sushi for dinner with Anna, Nicole, and mom!
Friday May 1st-
Made my monthly call to negotiate Aiden's therapy hours today. I'm actually a little late this month, I try to have this call done a few days before the end of the month to try to smoothly transition into the next month. Aiden's ABA is covered on a month to month basis. We have slowly weened to less and less hours, but still have to call each month and explain the importance of this therapy and how it affects Aiden's life. Our therapists have to send in reports each month proving Aiden's need. (PS- being vulnerable to the insurance world does not make me feel very safe.) I am very grateful though to Ms Jessica, she has really taken over a lot of the task of getting hours approves. My job is really just calling to remind them that we are still here and that this is still necessary.
Aiden had no scheduled therapy today so Skye and I took him with us on our morning trail walk. He did great. =) We saw a brown bunny and a woodpecker!
Skye started her new book for the month of May- Mrs. Frisby and the Rats of NIMH!
Between my first few posts and now, our world has changed more intensely than I could possibly realistically explain.
Aiden WAS diagnosed PDD-NOS with ADHD, Sensory Processing Disorder/Sensory Integration Dysfunction.
Aiden is now completely Gluten and Casein free (as of February 2008- looking back- he was GFCF for about 2 months before he started his ABA) and mostly soy and high fructose corn syrup free. Aiden was evaluated first at a Developmental Health Fair and then through the Seminole County School System in Mid-March 2008. Our good friend Alice had also met with us and given us her very honest opinion of that Aiden WOULD fit under an Autism Spectrum diagnosis. We ended up going to see geneticist, Dr Patricia Wheeler several times,as well as various other doctors.
We spent a lot of time last year (2008) with some wonderful speech and language and occupational therapists, the best of which where Ms Diane and Mr Daniel, who came to our home every week and worked one on one with Aiden. We have also been in intensive ABA (Behavioral Therapy) for a year now.(First Official Day of therapy was May 7th of last year- Aiden was originally to begin ABA on April 1st but insurance was a ruckus and it was pushed back!!) Ms. Chrystin, Ms Jessica, Ms Tatiana, Ms Crystal, and Ms Jennifer are just some of the wonderful behavioral therapists Aiden has worked with.
I am overwhelmed just sitting here writing the names of those who have helped us. Aiden is a changed child. He is talking and interacting and laughing and hugging. He is interested and inquisitive and loves to tells jokes and read stories. A year ago Aiden tested at NO social interaction with peers. He tested at a 10 month old level for speech and language, NOW, he is testing at a 4 year old level and has FRIENDS!!!!
Aiden is closely monitored by his doctors. He receives 2 EEG's a year and has undergone one MRI looking for seizure activity. His EEG's are abnormal in the left focal area, which puts him in a "high risk" category for seizures yet he hasn't actually HAD a confirmed seizure and he MAY never. We just have to watch him and report and abnormal or seizure like activity.
Aiden is also receiving an Autism Service Dog in December of this year!! We are VERY excited to welcome this new family member!! Really, I could go on about the service dog for pages, so maybe I'll save it for another post!
Our family are now a part of the S.E.P.T.A., The Autism Society of Orlando, C.A.R.D, Nathaniels Hope, and many other wonderful community organizations that help to gather and give information to all those families in need. We also regularly shop at Whole Foods in Winter Park and the Liberty Bakery in Oviedo! If you would like information on any of these organization please contact me!
SO- Here we are a year later and this time hopefully I can keep up with blogging a little!
I'll start with the past two weeks or so.....
Monday April 20th
I kept Aiden home from everything today. He has been really congested. I always try to just play it safe with him.
Tuesday April 21st-
Today Ms Jessica from the Florida Autism Center where Aiden goes to therapy came to the house to have an 'at home' day with Aiden. I'd say he did well in that he let her in the door AND showed her his room!! There were a few little snags, but all in all the day went well!
Thursday April 23rd-
Our beautiful neighbor Merriam passed away today. Merriam was a great friend to me in the short time that I spent with her. She shared stories about raising children, losing children, and coping with the world when it tells you something isn't right with your children. She was warm and truly loving and will be deeply missed.
Aiden had a long day a therapy today. We learned that one of his therapists, Ms Tatiana, will be leaving soon to go work in Tampa. Tatiana has been with Aiden for almost a year now. It's sad. =(
Friday April 24th-
My little Lily came over and stayed the weekend, Melissa was walking the Cancer Relay for Life, which I thought was awesome! Anna and I just went up to Tallahassee a few weeks ago and walked the relay at FSU in honor of our friend Kirk and my grandmother, who recently passed away. It's a great cause and it makes me feel strong to be around people who are willing to help by participating in these events! Friday was also Jonny's Founders Day at school. We all went and had a lot of fun! Bounce houses, auctions, water balloons, all of that great stuff!
After Founders Day we went over to Merriam's house and spent some time with Merriams daughter and husband. I couldn't keep from crying. I shared my story of how I met Merriam- when she locked herself out of the house in her nightgown and had to come use my phone! =)
Sunday April 26th-
Grandma took Jonny and Skye to church this morning for Sunday school! Aiden did NOT want to go today. He repeated that he "just wanted to stay home" about 100 times!
Monday April 27th-
Jonny had Cubscouts today! He is REALLY enjoying his den, he talks about their activities all the time.
Tuesday April 28th-
Lily came over this morning. Aiden had a long therapy session after school this morning so Skye and I used the time to go to the Morse Museum. We have been studying Louis Comfort Tiffany for our "month of April" artist and this museum is just BRIMMING with Tiffany artwork! http://www.morsemuseum.org
We also finished the Trumpet of the Swan by E.B. White! Skye successfully finished both of her April books!! Yaay. The first book was Anne of Green Gables!
I regrettably missed the Northland Near Him Home Educators meeting tonight! I REALLY wanted to go, but time just got the best of me!
Wednesday April 29th-
Called Theresa this morning just as she was getting ready to take Taylor in to Arnold Palmer for an overnight EEG. Taylor has been having more frequent seizures and has been having trouble with her eyes lately. I dropped Skye off at Woody's and then took Jonny and Aiden up to the hospital to visit. Taylor was being as sweet as ever. She was super happy to see us which felt good =) We ran into Cheryl at the gift shop at the hospital, one of the mom's of a boy in Jonny's cubscouts! She was there having some tests done on one of her sons. It's amazing to me at this point how many nurses, doctors, and mothers I know at Arnold Palmer...
I got a call from Evans Elementary today wanting to set up the first IEP meeting for Aiden to discuss his schedule for next year. Aiden will be moving from his all VE (ESE) class to a half day typical/half day special needs class. We are VERY excited to see how he does! I think we are set for May 18th to nail down the IEP.
Tonight was my first SEPTA event! (Special Education PTA) Brian and I took Jonny and Aiden with us. Aiden was surprised to see Ms. Jessica there from the Florida Autism Center! We got a lot of information, it was definitely worth going. (Even though we had to miss a weight watchers meeting AND a bible study to get there!!)
Skye spent the night at Woody's tonight! He took her to Chuck E Cheese, when I called she sounded like she was having an awesome time!
Thursday April 30th-
Taylor is out of the hospital. The doctor says she had 12 seizures during the testing. The medications she has been on are not working so they are going to try some new, more "adult" meds. I think there was some concern about how little Tay is and if her body can handle these medications and still allow her to have an appetite and gain weight.
Today was a long therapy day and Ms. Tatiana's last day. Aiden and I made her a card and took some pictures. It broke my heart that Aiden wouldn't give her a hug to say good-bye. I cried for 10 minutes in the car. I hate having to let the therapists go.
Jonny and Skye both had their annual physical today. Skye is little.. only the 9th percentile for height and I think the 10th for weight. No shots- which she was SUPER thrilled about. Jonny got a little lecture about eating right and has been referred out for metabolic blood work and to a neurologist. His doctor had been working hard for the last several months to get Jonny into a developmental pediatricians office to be evaluated. She feels that he is a likely candidate for Aspergers Syndrome. I always point out that I don't think Jonny would have ever been looked at if Aiden had not been diagnosed, but now that we have really researched we DO agree that he fits under the criteria and Jonny could definitely benefit from the types of "social skills therapy" the doctor is recommending. She is sending Jonny to the neuro mostly because she can't get the insurance to cooperate and cover a developmental in our county. Insurance is the bane of my existence.
On a lighter note- I got to go have some yummy veggie sushi for dinner with Anna, Nicole, and mom!
Friday May 1st-
Made my monthly call to negotiate Aiden's therapy hours today. I'm actually a little late this month, I try to have this call done a few days before the end of the month to try to smoothly transition into the next month. Aiden's ABA is covered on a month to month basis. We have slowly weened to less and less hours, but still have to call each month and explain the importance of this therapy and how it affects Aiden's life. Our therapists have to send in reports each month proving Aiden's need. (PS- being vulnerable to the insurance world does not make me feel very safe.) I am very grateful though to Ms Jessica, she has really taken over a lot of the task of getting hours approves. My job is really just calling to remind them that we are still here and that this is still necessary.
Aiden had no scheduled therapy today so Skye and I took him with us on our morning trail walk. He did great. =) We saw a brown bunny and a woodpecker!
Skye started her new book for the month of May- Mrs. Frisby and the Rats of NIMH!
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