I don't know why but the most popular questions I have been asked about lately are about accepting and giving advice pertaining to our children with special needs. Also, how to react to unsolicited and unwanted advice. This topic is a very touch subject especially when it comes to giving advice about someone else's children whether they have special needs or not. My reactions/advice may not work for everyone but these are some of my suggestions.
I do not really have a rule of thumb when it comes to all things advice related because every situation is different. I would suggest to always assess the situation before you start spouting wisdom and advice. Just because a person is telling you about their problems with their children does not mean that they want your advice about it. Sometimes they just need a good listener, someone to vent to in confidence or a shoulder to cry on. If they are telling me about a situation that I know nothing about or have no specific stance on I will generally just listen and stay positive throughout the conversation. However, if this is a topic that I know a lot about and I am dying to give my two cents, I will always ask permission before I weigh in on it. Sometimes, I get that whole Whoopi Goldberg, "YOU IN DANGER, GIRL!" vibe like I need to warn the parent about their situation or how to fix it but it is not always my place to say anything. Unless it is literally a life and death situation with their child, I probably would not say anything at all. I would never want to overstep my boundaries. I try to wait for a parent to come to me before I give any advice. In some situations it is best just to let the parents figure things out on their own and make their own decisions under a physicians care.
I have a few examples for you that I have experienced: I have had a friend come to me about vaccinating their children and if I think it is safe. In all honesty, I don't know if it truly safe or not to vaccinate your child. I've read statistics on the subject, I've heard horror stories about it and I've heard great stories about it. I know that Kaia has had all of her vaccinations and they did not affect her health negatively at all. I told my friend this and let her know that the decision to vaccinate is ultimately up to her and her child's physician. I am not a doctor so it is not my call.
Once a friend asked me about applying for disability for their child. This is a situation that I know a lot about since Kaia has been on disability in the past. So, I gave them advice on how to navigate the system, how to apply and so on. Since this was not a medical question I felt comfortable giving the advice.
Medical advice is always tricky because if you have no medical background then you are not really qualified to give the advice. I can tell someone what steps we took to find the right doctor for Kaia for her heart condition, the medications that have worked or not worked for her neurological problems and her therapies but I would never say you must do this or must do that! Also, if you give medical advice and the parent goes with it, it could have disastrous results. Your friend could hold you responsible, friendships could be ruined and you do not want to experience that kind of guilt or loss.
When it comes to accepting advice I always try to stay neutral and level headed but it isn't always easy. I have been known to lose my temper when someone tells me what do when they have no clue about Kaia's situation. I can't tell you how many times I have sat through listening to someone give me unwanted advice and my eyes are rolling so far back in my head they are about to pop out of my skull! It is an involuntary eye roll and I have to turn away from them quickly so I don't start an argument. If an argument is what you want then by all means, go for it! If the person giving you advice does this constantly and you are sick of it maybe they do need to be put in their place. Otherwise, they will not know how you feel and you will constantly have to listen to their irritating advice forever.
I remember one time in particular when I had to put someone in their place. Ryan and I had taken Kaia to a hospital that shall remain nameless to get a routine check-up. Nothing big, just x-rays and such. We were in the exam room and this hospital employee I had never met before comes in and takes a seat in front of us like she had bad news or something. So serious. She takes her seat and begins to inform us that she is a social worker with the hospital. She proceeds to tell Ryan and I that Kaia is a retard and she will be living with us for the rest of her life and she doesn't think we are prepared for that. Ryan glanced at me and gave me this look like he knew stuff was about to hit the fan. Instead of saying something back to her Ryan just sat back in his chair and relaxed. He had this smile on his face that said, "Ooooooh, this is gonna be GOOD!" If you have read my previous blogs you know that I have zero tolerance for the "R" word. How could someone in this social worker's profession think it is acceptable to call a child a retard to her parents face and why could she think that we were not prepared for Kaia's future? This witch didn't know me from Adam and frankly, I was deeply insulted by her comments. I reminded her that she is only a social worker and she was not qualified to insinuate that my daughter was a retard. I told her my daughter was too young to have an IQ test and her MRIs showed no brain damage. I also let her know that I always knew Kaia would be in our care for the rest of her life and Ryan and I are willing and fully capable of taking care of her because she is our daughter and we love her unconditionally. I'll stop my story about my response to her here because I'm sure you get the picture. I did not use profanity or raise my voice to her but I let her know exactly who she was dealing with. We have been to that hospital several times since this incident and she was never seen or heard from again.
When you are faced with a situation like that my suggestion would be to research your child's condition and know your facts. That way when some dumbass who thinks they know everything comes in with their unsolicited advice you can walk out making them feel as stupid as they sound. Show them who's boss. That boss is you!
I'm not saying that every person will give you advice because they think they are smarter than you and know everything. Most people are genuinely trying to help you. If that is the case, I would advise you to just listen to what they have to say, nod your head and thank them for their concern. Sometimes it is better to be cool, calm and collected about it than to become hot headed and confrontational. Then you will just look like the crazy parent and you will always be remembered that way.
How do you react to unsolicited advice? How do you know when to give advice? Leave your answers in the comments section. I would love to hear your feedback! Thanks for reading.
Raising Kaia: A Mommy's Story
Sunday, April 21, 2013
Friday, March 29, 2013
Spring Heart Break
My awesome job allows me to have two weeks off for spring break as opposed to the normal one week spring break that public schools have. The first week was really cool because Kaia was still in school and I was able to run errands and go on a trip to Legoland in Winter Haven. I organized that trip for our students and their families and it was a wonderful, exciting trip. The students and their families had a lot of fun there riding the rides, getting their faces painting and having a normal day at an amusement park that they may not have normally had the luxury to do otherwise. I mean, I can not afford $80 per ticket plus $12 for parking. Luckily, Legoland was very accommodating and offered us a very affordable rate for our students and families. We can not wait to go next year and the many years to come.
The second week of spring break has been tough on both Kaia and I. We can not leave the house because of her sunlight sensitivity. I can not remember if I mentioned this in a previous post but Kaia is photosensitive, meaning sunlight or any kind of bright, indoor light causes her to have seizures. We can not even open the blinds because the sunlight filtering through them causes seizures if it hits her line of vision. We basically live like cave people except with electricity, running water, air conditioning etc. We have to dim the over head lighting or put dark sheets over the windows because any kind of light is like a magnet to her. She has got to look directly at it. She just can not help herself! Also, she refuses to wear sunglasses when she is outside so she can not go outside at all unless the car or school bus has darkly tinted windows, which they do.
So, Kaia and I have been playing indoors all week. Due to cabin fever, we played Beauty Shop. I decided to wash, blow dry and flat iron her hair just like mine and gave her a pedicure She really loved it! I added some photos so you all could see it. The next day I decided she needed a haircut and with no professional training on my part, I gave her one. EEK! I just hope it looks okay after it is washed and back to curly. Only time will tell on that one and it will grow back in no time anyway, right? RIGHT? She has been playing with her light-up musical toys, we have been listening to the Jackson 5 station on Pandora. This morning she colored pictures for Mimi and Papa. She also colored pictures for Daddy and Grandma to give them when they get back from Peru this weekend. I am missing Ryan like crazy! Fortunately, we have been able to Facetime when he has wifi in Peru. He hopped on a plane in Peru a couple of days ago and is now in the Amazon rain forest where there is no running water or electricity let alone wifi!
The heart breaking part of our spring break is that Kaia and I have to stay indoors at all times. Fortunately, my dad came over on Wednesday so I could run some errands but that is the only time I have left the house this week. It really upsets me that Kaia can not go out either. I know she can not go bike riding, climb trees or walk around the neighborhood but I just wish she could layout in the backyard for a little while and catch some rays. I wish I could take her in her wheelchair around the neighborhood or around Lake Hollingsworth where the Achievement Academy's Rise & Shine Walk for Kids will be *insert shameless charity plug here*https://secure.qgiv.com/for/achieve/event/2142/ ) I also wish that I could take her to the Common Ground Park here in Lakeland that is a modified playground for children with disabilities or go out for ice cream. Alright, alright enough of the pity party. I'll stop before someone calls the Wambulance on me.
I hope you all are having an awesome spring break where ever you are and have an awesome weekend! I'm really looking forward to summer so I can go to our beach house because it has been really cold the past two weeks even in Florida.
The second week of spring break has been tough on both Kaia and I. We can not leave the house because of her sunlight sensitivity. I can not remember if I mentioned this in a previous post but Kaia is photosensitive, meaning sunlight or any kind of bright, indoor light causes her to have seizures. We can not even open the blinds because the sunlight filtering through them causes seizures if it hits her line of vision. We basically live like cave people except with electricity, running water, air conditioning etc. We have to dim the over head lighting or put dark sheets over the windows because any kind of light is like a magnet to her. She has got to look directly at it. She just can not help herself! Also, she refuses to wear sunglasses when she is outside so she can not go outside at all unless the car or school bus has darkly tinted windows, which they do.
So, Kaia and I have been playing indoors all week. Due to cabin fever, we played Beauty Shop. I decided to wash, blow dry and flat iron her hair just like mine and gave her a pedicure She really loved it! I added some photos so you all could see it. The next day I decided she needed a haircut and with no professional training on my part, I gave her one. EEK! I just hope it looks okay after it is washed and back to curly. Only time will tell on that one and it will grow back in no time anyway, right? RIGHT? She has been playing with her light-up musical toys, we have been listening to the Jackson 5 station on Pandora. This morning she colored pictures for Mimi and Papa. She also colored pictures for Daddy and Grandma to give them when they get back from Peru this weekend. I am missing Ryan like crazy! Fortunately, we have been able to Facetime when he has wifi in Peru. He hopped on a plane in Peru a couple of days ago and is now in the Amazon rain forest where there is no running water or electricity let alone wifi!
The heart breaking part of our spring break is that Kaia and I have to stay indoors at all times. Fortunately, my dad came over on Wednesday so I could run some errands but that is the only time I have left the house this week. It really upsets me that Kaia can not go out either. I know she can not go bike riding, climb trees or walk around the neighborhood but I just wish she could layout in the backyard for a little while and catch some rays. I wish I could take her in her wheelchair around the neighborhood or around Lake Hollingsworth where the Achievement Academy's Rise & Shine Walk for Kids will be *insert shameless charity plug here*https://secure.qgiv.com/for/achieve/event/2142/ ) I also wish that I could take her to the Common Ground Park here in Lakeland that is a modified playground for children with disabilities or go out for ice cream. Alright, alright enough of the pity party. I'll stop before someone calls the Wambulance on me.
I hope you all are having an awesome spring break where ever you are and have an awesome weekend! I'm really looking forward to summer so I can go to our beach house because it has been really cold the past two weeks even in Florida.
Thanks for reading and I hope you enjoyed it!
All My Love,
Ansley Henderson
Ryan and I Facetiming from Peru.
Kaia rocking her Pink Floyd shirt. This is actually my shirt and it fits her perfectly. Kinda scary!
Sleepy spring break Kaia.
Hair blow dried and flat ironed like mommy's.
She would not stop clapping she like it so much!
Ryan and I a few weeks before he left for Peru. I miss him so much! I'm gonna squeeze him and kiss him so hard when he walks through the front door!
Who is The A.L.L. Campaign
Who is The A.L.L. Campaign
I am working on getting a Masters Degree in Disability Studies. It does not surprise me when people ask “what exactly is Disability Studies or what can you do with this type of degree?” The truth is disability is for many a new concept. No one really ever gives it a second thought, unless of course they are directly affected. What can you do with a Disability Studies degree, the truth is you can do quite a bit with it; it all depends on the outcome you want to achieve. In my case, I plan to use my degree as well as my personal experiences as someone with a disability to further bridge the gaps that currently exists in our society. Education is the key to making others aware and accepting of the many differences that make us human, whether it is a disability, disorder, or the color of our hair. Difference is an issue that affects our society as a whole as we are all different in many ways. Throughout history society has made it a point to make an issue of differences they can’t explain. It is my hope through the ALL ABOUT ME CAMPAIGN to help people accept and understand the differences and similarities that we all have, and to embrace those same differences and similarities that make us who we are. After all, being different is what makes us unique. Therefore, I challenge you to embrace your uniqueness…Join my campaign to change social attitude towards what makes us different and yet the same.
Join the ALL (ACCEPT LISTEN AND LEARN) ABOUT ME CAMPAIGN an awareness campaign created in an effort to decrease discrimination, hate crimes random acts of violence and bullying in our society. The purpose is to raise awareness and acceptance by sharing ourselves and the stories of those who can not speak for themselves.
Join the ALL (ACCEPT LISTEN AND LEARN) ABOUT ME CAMPAIGN an awareness campaign created in an effort to decrease discrimination, hate crimes random acts of violence and bullying in our society. The purpose is to raise awareness and acceptance by sharing ourselves and the stories of those who can not speak for themselves.
The Motivation
In the passed few years we there have been so many random acts of violence in the United States of America. The Colorado Theatre Shooting, the shooting outside of the Empire State Building, The Sandy Hook Elementary Tragedy and the shooting of Trayvon Martin amongst many others . While we as a society try our best to come together in times of tragedy we often lose focus on the victims of these horrible tragedies and focus primarily on the person or people who committed the crime.
What I’m Trying to Accomplish
Initially I wanted to do a documentary with at least three people who were affected by random acts of violence i.e. a mother a sister a brother a friend or him/herself. The original plan was to have these family members talk about their loved ones and about their experience with the legal system after their personal experiences with violence and what they wish would change within the legal system. However I was not able to get anyone who was willing to share their story (at least I have not found anyone yet but I am still looking).
The Message I Want to Send Out
Often times depending on the crime or the person that was victimized people try to make justifications on why an act of violence occurred. For example when Trayvon Martin was killed there had been a lot of discussion about how if he had not been wearing certain clothing he wouldn’t have been shot down and killed. The media tries to make us the audience pick sides and or are always trying to justify the actions of others. somehow forgetting that the victims were people! More importantly they are daughter’s son’s friend’s mother’s, father’s, sisters and brothers! It doesn’t matter where they were what they were doing what they were wearing or what they were into, we mustn’t forget that somewhere in the world somebody loved them!
Speak Out
With The A.L.L. Campaign I would like to give people the opportunity to tell their stories in a safe environment. I hope to give people the courage to stand up for something they believe in. Most importantly I want to give people a place where they feel safe and are not afraid to be themselves!
Contribution
There are several ways that you all can be apart of The A.L.L. Campaign.
You can take an A.L.L. Campaign Photo-
- Make a sign that says My name is __________ and I (insert something that makes you different here) but I am just like you.
- Take a picture of yourself holding the sign
- Send it to accept.listen.learn@gmail.com
Take a Stop the Violence Photo
- Write the words Stop the Violence on the Palm of your hand or your wrist or write the word Love Over Violence on the palm of your hand or wrist
- Take a Picture of your hand/wrist
- Send it to Accept.listen.learn@gmail.com
Tell your story!
- If you or some one you know has been affected by a random act of violence and want to share your story Please write to me!
- If Possible please submit A.L.L. Campaign with your story.
- If you are telling a story about a friend or a family member and can provide a photo please do
- Note
If you want to tell your story but want to keep it private please send me your story and put the words “Private story” in the subject line
If you would like me to speak at your school or at your organization about
- Bullying
- Discrimination
- Bigotry
- Random Acts of Violence
- Living with Multiple Disabilities
Please Email me at Accept.listen.learn@gmail.com with the words “Business Inquire” in the subject line.
Disclaimer
Please be aware that A.L.L. will be posted on the A..L.L Campaign Blog and our up and coming website (unless the participant says otherwise)
Please Like us
Thank you Ansley for allowing me to be a guest blogger on raising Kaia and allowing me to be apart of your life. Thank you for believing in me. I really appreciate having you in my corner Thank you, much love to you Ryan and Kaia xoxo
Sunday, March 24, 2013
From Blogging to Booking
Before I started this blog people were asking me to speak at different events for Kaia's school. I would tell my personal story as well as how the school had changed our lives forever. I also spoke about the long journey we have been through to find answers and treatment for Kaia's condition. Recently, I was asked to be a special guest on a radio show about empowering women. This is such an honor for me that people actually want to hear what I have to say and take it to heart with them. It is a daunting task for me as well because I know that I will always be honest and speak from my heat just like I do when I do my public speaking. I have not booked the radio show yet but when I do, you all will be among the first to know.
For the past several years my family and friends have been pushing me to write a book about my life both before and after having Kaia. I do not mean to sound condescending but I believe it could possibly be a best seller. My life before (and sometimes after) having Kaia were quite scandalous and crazy while inspiring and hopeful at the same time. Due to the fact that it is a memoir and all true, I believe it would be a good read. Heck, I lived it and I still cannot believe that it is my story. Of course, names, places and things will be changed to protect the innocent and the guilty. I would never tell the truth about others because those truths are not mine to tell. I value my privacy and the privacy of others so I would have to take great care of what and whom I am writing about. I intend to do just that.
I would like to write two books. The first book would be about my life pre-Kaia and the second would be about my life post-Kaia. Ryan, my mom, my mother-in-law and many other family members and friends have been encouraging me to do this for years. Now with my public speaking events, my blog, my career and now my invitation to be a guest on a radio show I think the time has come to follow my dream to become an author. The only problem is that I have no idea where or how to start. The only program that I have on my computer to write is "Notepad" and it does not even have spell check on it! Not an ideal program at all.
So, my loyal readers, what programs would you suggest that I use to write a book on my computer? Are any of you a published author? What is that process like? How did you find a publisher and funding? Will you all give me any advice from a writer to a writer? Remember, we must stick together and pass it on.
Finally, what would you all like to read about in my book? Anything from my childhood to my awkward tween/teenage years, young adulthood all the way through my *cringe* thirties? Ask away, nothing is off limits. Leave your questions or comments in the comments section below. I cannot wait to hear what you all have to say!
For the past several years my family and friends have been pushing me to write a book about my life both before and after having Kaia. I do not mean to sound condescending but I believe it could possibly be a best seller. My life before (and sometimes after) having Kaia were quite scandalous and crazy while inspiring and hopeful at the same time. Due to the fact that it is a memoir and all true, I believe it would be a good read. Heck, I lived it and I still cannot believe that it is my story. Of course, names, places and things will be changed to protect the innocent and the guilty. I would never tell the truth about others because those truths are not mine to tell. I value my privacy and the privacy of others so I would have to take great care of what and whom I am writing about. I intend to do just that.
I would like to write two books. The first book would be about my life pre-Kaia and the second would be about my life post-Kaia. Ryan, my mom, my mother-in-law and many other family members and friends have been encouraging me to do this for years. Now with my public speaking events, my blog, my career and now my invitation to be a guest on a radio show I think the time has come to follow my dream to become an author. The only problem is that I have no idea where or how to start. The only program that I have on my computer to write is "Notepad" and it does not even have spell check on it! Not an ideal program at all.
So, my loyal readers, what programs would you suggest that I use to write a book on my computer? Are any of you a published author? What is that process like? How did you find a publisher and funding? Will you all give me any advice from a writer to a writer? Remember, we must stick together and pass it on.
Finally, what would you all like to read about in my book? Anything from my childhood to my awkward tween/teenage years, young adulthood all the way through my *cringe* thirties? Ask away, nothing is off limits. Leave your questions or comments in the comments section below. I cannot wait to hear what you all have to say!
Thanks for reading!
All My Love,
Ansley Henderson
Friday, March 22, 2013
The Difference Between a Diagnosis and Treatment
In my previous post "The Results Are In" we received some devastating news from the specialist in Atlanta. His reported showed that all of the tests results came back unremarkable. That meant that we had no diagnosis even after we went all over the country to find a diagnosis for Kaia. We scheduled our follow-up appointment to discuss the results but we were unable to make it. Kaia's seizures have increased to a scary degree and we were not able to make the trip to Atlanta because of this. I notified the specialist in Atlanta and within an hour of speaking with his office, I received an email from the that read, "Mrs. Henderson, Dr. Shoffner wanted me to reach out to you in regards to rescheduling your appointment, as we have genetic information that he needs to discuss with you concerning you daughter's diagnosis."
This means that he might have a diagnosis after all! Many of the tests that were ordered have to be cultured and can weeks to months to finish the test. Maybe some of those of those test came in later after he sent me the first report. This doctor know the difference between diagnosis and treatment, so I know he has a diagnosis. We want to get back to Atlanta as quickly as possible but Ryan is out of the country right now for two weeks. When he gets back we will sit down and choose a date to see Dr. Shoffner. We need to find out if he wants to see Kaia again or if Ryan and I can just make it a two day trip without her. It would be so much easier for us if she could stay here with Mimi and Papa or Grandma while we go and make it a two day trip. We may need help financially but I know we can make it work. I am so excited about this trip because then we will finally have a name for her genetic disorder. I can not wait!!!! Unfortunately, I am having some health problems as well but mine will be put on hold until after we see the doctor.
All Our Love,
This means that he might have a diagnosis after all! Many of the tests that were ordered have to be cultured and can weeks to months to finish the test. Maybe some of those of those test came in later after he sent me the first report. This doctor know the difference between diagnosis and treatment, so I know he has a diagnosis. We want to get back to Atlanta as quickly as possible but Ryan is out of the country right now for two weeks. When he gets back we will sit down and choose a date to see Dr. Shoffner. We need to find out if he wants to see Kaia again or if Ryan and I can just make it a two day trip without her. It would be so much easier for us if she could stay here with Mimi and Papa or Grandma while we go and make it a two day trip. We may need help financially but I know we can make it work. I am so excited about this trip because then we will finally have a name for her genetic disorder. I can not wait!!!! Unfortunately, I am having some health problems as well but mine will be put on hold until after we see the doctor.
I will keep you all posted on our progress. Thank you all so much for reading and following my blog. It truly means the world to us!
All Our Love,
The Hendersons
Achievement Academy's 7th Annual Rise & Shine Walk for the Kids on Saturday, April 6th at Lake Hollingsworth in Lakleand, FL
The Achievement Academy's 7th Annual Rise & Shine Walk for Kids is on Saturday, April 6, 2013 at Lake Hollingsworth in Lakeland, Fl. I did this fundraiser last year and we had personal pages to donate to. This year is a little different. We will not have the personal pages but you are welcome to donate by using this link:
https://secure.qgiv.com/for/achieve/event/2142/
You can also donate in other ways other than donating online. If you would like to send the school a personal check you may send it to this mailing address: 716 E Bella Vista St, Lakeland, FL 33805
My testimony about this school is so amazing! On Kaia's first day of school, we brought her in a stroller and she was just kind of "there". She was unaware of anything or anyone! She could not hold her head up, sit up, feed herself. Cognitively, there was no awareness. As the years progressed she became much more alive and alert. She bonded with many of her teacher, para and therapists. I will never forget the love and support the staff at the Achievement Academy gave my entire family. They helped me get through the hard times and helped me laugh through them. They hugged me and gave me words of encouragement when I needed it the most. I could visit the school anytime I wanted to. I never once worried about if Kaia would be safe, hungry or sad because they were always by her side and mine when I needed them. They helped our family get through the holiday season while I was not working to make sure our family had the best Christmas ever!
When it finally came time for Kaia to graduate it was the most touching graduation ceremony that I have ever been apart of. They had our special students put on this special show for us and that will stay in my heart forever. Ryan and I were able to walk Kaia in her wheelchair down the aisle in her cap and gown. One of the staff members took the most beautiful pictures of us with Kaia holding her diploma. We have these pictures hanging up in my home right now.
I am so honored to be employed by the Achievement Academy! I never thought I would go back to work again but when this job offer came to me it was a no brainer! My only question was, "When do I start?"
I owe my life, my family and daughter's achievements to the Achievement Academy. Please donate anything you can. Also, please facebook or tweet me and let me know that you donated so I can personally thank you! Please include your mailing address when you let me know you donated.
Thank you for your continued support! I will post pictures of the walk as soon as I can.
Saturday, February 2, 2013
Brainstorming
I hope you all are having an awesome weekend! I've been working on some blog posts and hope to have them up this week. Kaia was taken by ambulance to the hospital on Wednesday for uncontrollable seizures so it has been a crazy week to say the least. Thanks for always checking my blog for new entries and I will give you some new material very soon. Here are some recent pics to tide you over until then. I hope you enjoy them!
As always, please donate to the best school for preschool age children with developmental disabilities. The school is also my employer and I absolutely love working there. No donation is too big or too small. Help the Achievement Academy with their commitment to brighter futures for our children. Your generosity is very much appreciated! Just click the link below to donate. Thanks in advance.
Yours in Blog,
Ansley
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