Advocacy, Special Needs, Special Needs Parenting

Is the puzzle piece offensive?

The question is often asked, is the puzzle piece offensive? As an autism momma, I had never put that much thought into it. It was a symbol that represented one of my child’s many diagnosis. Most diagnosis’ have ribbons or symbols that are known around the world. So, to me that is just what the puzzle piece was.

History of the Puzzle Piece

The puzzle piece was first used in 1963 when the London Nation Autistic Society created a logo with a puzzle piece and a crying child. The organization liked the puzzle piece because they felt it explained the diagnosis. Their children were suffering from a puzzling disorder, and they needed to solve the puzzle.

1963 National Autistic Society Logo

Over the years the puzzle piece became well know as the symbol for Autism. Most large Autism organizations including, Autism Speaks, and the Autism Society. With a rise in frustration we are left to wonder if it is time for the symbol to change.

Autistics Speak out against the Puzzle Piece

On social media it is no secret that people on the spectrum view the puzzle piece as offensive, as many advocate for the use of the infinity symbol instead. I must admit, when I first heard about this I was a bit taken back. I was confused as to how it was any different than all of the ribbons and symbols that other organizations use to represent their disorders or illnesses.

Infinity symbol preferred by many on the spectrum

I decided to do a little research of my own. When I placed a poll on an Autism Parenting page called “Mothers of Autism” asking if they feel the puzzle piece is offensive, I found that of 104 people who responded to the survey only 12 found the puzzle piece offensive. So, why such a hot topic?

Well, the answers lie within the Autism community itself. Self-advocates are making their voices heard, speaking out against the use of the puzzle piece. Many refer to it as demeaning, and feel that it symbolizes they are incomplete, and missing a piece.

I think that many parents view it just the way that I always had. A symbol that represents the mystery behind their child. That represents a puzzling diagnosis. But, the advocate in me must look at it from an Autistic persons point of view. How would I feel if I was being placed into the category of the missing piece of the puzzle? If individuals on the spectrum find it offensive, and are asking for change, then what are we waiting for?

Why are we dismissing self advocacy?

Per a conversation that I had with an autism parent, Silke Lesch Mueller, who happens to be on the spectrum herself, it is clear that these feelings of dismissal are very real.

What is being forgotten is that this is that we adults and teens on the spectrum have spoken out against the puzzle piece manifold but keep getting patronizing and dismissive answers in return.”

Silke Lesch Mueller

As a parent, teacher, family member or friend, we want nothing more that for someone to be able to advocate for themselves. So, if the Autism community is doing just that, why are we not listening? Why are those of us who are not diagnosed giving such push back on something that is so offensive to the community that we “support”. This is not about us. It is about our children, our students, or family members and our friends. They can and are advocating for change. Maybe it is time we listen.

Links and Resources

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6085079/

https://www.altogetherautism.org.nz/autism-no-puzzle-nothing-wrong-with-us/

https://www.disabilityscoop.com/2018/02/02/autism-journal-abandons-puzzle/24668/

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Advocacy, Special Needs, Special Needs Parenting

Special Needs Parent and Business Owner? My New Journey Begins.

The last 7 years have consisted of intense time management, self-education, college courses, and following a path that I never could have dreamed of. When I was in high school, I loved music and my social life was my priority. I had no direction, and had no idea what I wanted to do with my life.

I went to college right out of high school for a semester before realizing that I still had no Idea what I wanted to do. Six months later I found out that I was pregnant with my fist baby. Little did I know, that child would be my answer. She has continued to pour inspiration into my soul. I have taken the life I was given with her and turned it into something positive to help other families who are going through the same things we have gone through.

I gave my heart and soul to the special needs community and their families. I knew that is where I was meant to be. I have made so many amazing connections throughout our journey and it led me to doing a lot of advocacy work. I am a special education advocate, and that is where my passion lies. This is my niche. I have continued to educate myself on the legislation that surrounds special education, and how I can use this knowledge to advocate for the education that every child with disabilities deserves.

I decided over the past couple of months that it was time to dive in and expand what I was doing. I was ready to create my own business, go through the legalities of it and grind. It was time to take all of this passion and turn it into something to help my community. And this, my friends is how Advocate Like a Mother, LLC was born.

People often ask, What is an advocate? Well, an advocate is just that. A person to attend IEP and 504 meetings to advocate for your child’s education. I have used an advocate myself and that is when I realized the value of having someone on your “team” throughout your child’s special education journey. An advocate is another set of eyes and ears throughout the process. An advocate is there to help you understand all of the confusing terminology used during these meetings. And someone to mediate. To help maintain a positive, business relationship between families and educators.

I remember my first IEP meeting. I had no idea what that even meant. All I knew was that I had a child with severe disabilities who needed help so I had to go meet with the school. I had no Idea that I was walking into a meeting with people who were not ready to accommodate my child’s needs, and I left that meeting agreeing to what I thought had my daughters best interest at heart. I was going to need to consult with her doctors to move around her medication and feeding schedule because they did not have a full time nurse on staff. She was not going to have the one to one assistance that she required, and I thought I had no choice but to agree.

When I left that meeting, I made a promise. Not only to Kaydence, but to myself. I was going to throw myself into learning about the special education process. I was going to learn the legalities. I immersed myself in living and breathing special education advocacy, for my own child at first. As time went on, families started reaching out for help. Families needed someone there to advocate for their child. This is when I knew. This is where my passion lies.

Advocate Like A Mother, LLC is now up and running, and I have taken what I know about advocacy, and created a comprehensive website geared towards advocating not just locally, but nation wide. Being able to offer IEP and 504 consultation services to any family who has access to phone and internet.

I feel so blessed to have the love and support of family and friends as I continue this journey that God put before me, and thank you so much to all of our Catching Kaydence followers and fans. We love an appreciate every single one of you!

-Brooke

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Advocacy, Special Needs, Special Needs Parenting

Exhaustion Does Not do it Justice

A day in the life of Kaydence is simply exhausting. To say the least.

Her energy levels are that of the Energizer bunny. ( I know, I know, Every parent compares their kid to the energizer bunny right?) Well, let me just say, my analogy is legitimate, and don’t worry. I will tell you why.

My child can run on little to no sleep, and when she is sleep deprived the intensity of her energy, and behaviors amplify. At times, it is terrifying. She becomes physically aggressive towards others and herself. Her body will simply not stop. She is on a concoction of medications to help manage this, but there are times that it is just not enough.

As she surpassed the age of one, it was clear that she was showing autistic behaviors, but at the time I just chalked it all up to her diagnosis of Cornelia de Lange Syndrome. There are in fact a lot of similarities when it comes to sensory issues, and speech and language delay etc…

By the age of three, I was begging for answers….and help. My child was too exhausting for me to keep up with. She was literally all over the place and was not able to communicate in the least bit. Her frustrations were growing, her behaviors were increasing in duration and intensity. I was at a loss. And then, finally, a doctor mentioned Autism and said that she believed that Kaydence fell within the spectrum. At first it was a hard pill to swallow. Another Diagnosis? Another test?

I went home feeling defeated. But, I started doing my research. I started reading into the diagnosis, and different therapies that were effective. Ways that these kids were implementing functional communication.

She was tested and rather quickly and was diagnosed on the ”low functioning” end of the spectrum. Another low blow. But I left that appointment feeling ready. Ready to do my research, ready to joint online forums and facebook groups, and ready to educate myself. It gave me hope. I started reading into ABA therapy, looking into every possible sensory toy on the market, and all of the private schools for kids on the spectrum.

This is when it clicked. Another diagnosis was a blessing in disguise. It has opened the doors to, and maintained access to all of the services that Kaydence needs. She is excelling at her new full time ABA therapy center. She is leaning to functionally communicate. She is coming into her own. Things I never thought possible are current goals! Using PECS to communicate, and even potty training!!!

The last 7 years of my life have been dedicated to researching, and educating myself of my child’s diagnosis’s, and let me tell you, her diagnosis list goes on…and on…and….you get the point. But, I knew this is what I needed to do to be the BEST advocate I could possibly be for her. I needed to do this so that I could help educate other that are going though what we have been through. I had to become the expert on my child’s diagnosis’.

It led me to a life of opening my heart and soul to the special needs community. I work in ABA therapy as a Person Centered coach, I am an adult foster care provider and have an adult on the spectrum who lives with us full time, and I am a special education advocate. I used to tell everything as Kaydence’s story, but this is my story too. It is OUR story.

This may be Kaydence, but his is our story. This is our Journey. This video includes her using her PECS, and shows the wild child within. This is a good day. 💜 She was definitely all over the place but her engagement in behaviors was on the low end today. Enjoy

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Advocacy, Special Needs, Special Needs Parenting

A Morning With Kaydence

Mornings are hectic. I am often times getting four children up and ready, as well as myself. I have had to make myself get up an hour before the kiddos, so that I can get ready, and be able to give them all of my attention. That being said, Landon 10, Kasen 6 and Emma, 5 are rather self sufficient. They are unbelievably independent in the morning, knowing that Kaydence requires assistance with all personal care.

On this particular morning, momma needed a shower!! I got up at 7:30, showered and decided that it would be fun to share a bit of our morning routine with you guys. I think sometimes it is hard to capture what it means to be full time around the clock care giver. It is parenting on steroids. Think about a baby. They need help with just about every aspect of their life. Now think of that baby, growing up to be a child. Now 7, and 40+ lbs. Kaydence still requires that same level of care.

She is still in diaper/pull ups (we are working on some potty training, FINALLY) so that is diaper changes throughout the day. Preparing and helping feed her, all of her meals. She needs assistance with bathing, getting in and out of the bath tub. Getting in and out of her chair, full assistance with brushing her hair, wiping her face, transfers in and out of the car. And then not to mention lifting her wheel chair in and out of the car, and then her in and out of the wheel chair. It is constant lifting. And it is exhausting. By the time Jake gets home, I am so ready to pass the torch. I am so ready for that break. For someone else to be able to lift her, draw up and administer her medication. Feed her. Change her. It is such a blessing to have Jake by our side and here to help me. I am not sure that I could survive without him!

Here is a little video I put together following our morning. I hope you all enjoy!

As always, thank you all so much for the continued love and support! Please take a minute to subscribe to our blog here at the bottom of the page, and also to our YouTube channel, as I post separately on each at times! Thank you for following Kaydence’s Journey

-Brooke

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Advocacy, Special Needs, Special Needs Parenting

What Kind of Parent Medicates Their Child?!

Whoop whoop!!! Right here, this mom! Now, I know that this is a controversial topic to many but, I have no shame, and here is why.

Of course we have to back it up a bit because there was a point in time when Kaydence was between two and three where I felt a great deal of guilt for even considering medicating my child. She was so young. It started out with sleep. Kaydence was only sleeping on average two to three hours per night. At the time, she was connected to a feeding pump close to 24 hours a day. So, if she was up. I was up. I went months, constantly getting up in the middle of the night. (Not to mention I had a new baby on my hands in the midst of this) She would tangle her tubing all around her body/neck. It was a constant battle keeping her safe. This led to extreme anxiety for me. I felt like I had to be constantly watching the video monitor.

And then. My breaking point. We went in for her check up at the Department of Developmental and Behavioral Pediatrics. They did a new evaluation to test where Kaydence was cognitively. I knew what was coming but it was still hard to hear, she had made no progress, and actually regressed over the last 8 months. I thought, how could this be?! She was in intense therapies, seeing 6 therapists a week! Her doctor explained that it was probably directly linked with her lack of sleep and intense ADHD. Her body never stopped. Even in her sleep. Even when she was exhausted her body was in a manic state. I cried and begged for help. We started some doses of medication to help with sleep at night time. First we tried melatonin, which I did not feel so bad about. But when that failed we had to move on to Clonidine, and eventually down the line added Trazodone.

Finally! Her sleep was under control and this momma was able to get the sleep I had been longing for! But of course, one thing leads to another and It became time to address her ADHD we started a dose of tenex, and this was a game changer. She was able to sit still for the first time in 2 years! And then, over the years we added Risperidone for aggression and behaviors, and Lexapro for anxiety, and even more recently a Clonidine patch to further assist with behaviors.

I lived feeling shameful for a long time. I was that mom, the mom who could not handle her kid. The mom that was not strong enough or tough enough to get through it without medication. I felt like I should of tried harder, I should of tried every possible natural supplement.

But! I am here to tell you, you should NEVER feel that way. Do not let the stigmas around medication and mental health bring you down! Stand strong and be confident in the fact that you and only you know your child best. You are and always will be your child’s best advocate. If I sat here and took everyone’s opinion to heart, I would be suffering, but most of all, my child would be suffering. She deserves the best, and while some will say that medicating her is not the best I beg to differ. Without her medication she will not sleep but maybe two hours. She would be unable to control her body, her emotions, and behaviors. Her behaviors include self injury. So, I will stand tall and shout to the mountain tops. I am NOT ashamed. I am NOT a bad mother. I will NOT let others opinions bring me down. I will stand strong and continue to advocate for my child.

Love,

A relatively well rested special needs momma!

-Brooke

Advocacy, Special Needs

“She still looks funny to some of us”

Let’s back up, just a bit. Our stay in NICU was only a 38 day stay. Don’t get me wrong, I know many families endure much longer NICU stays, but that does not mean that it was not traumatic for both me, and Kaydence. I watched my baby be poked and prodded, test after test, trying to figure out why my baby just would not eat. It felt like an eternity.

One day we had an amazing nurse, and she expressed her concerns to the doctors that day. She advocated that they look harder, “why is this baby still not able to suck on a bottle? there has to be a reason!” Her speaking up led to an echo where we learned about Kaydence’s heart defect that would require surgery soon. The first of many devastating blows. We continued working on feeding, and eventually she was able to build up enough strength to consume an adequate amount of formula, and we were going to be released. I remember feeling relieved. We had our answer, and now knew what we needed to do to fix it….or so I thought.

I will never, and I mean never, forget the comment that the nurse practitioner made to me the day of Kaydence’s release. Here I was, so excited to be going home, feeling a sense of relief, feeling like it was finally going to be time to bond with my newborn at home. But then, like a ton of bricks, “she still looks funny to some of us, you should see genetics. We suspect that it could possibly be Cornelia de Lange Syndrome, but we do not want you to stress. We are not positive, and well, it would not be a good outcome.”

And there, right there in that moment, I had nothing to say. I froze in fear, and panic. Here, for the last two weeks, I was under the impression that my child just needed the holes in her heart repaired, but that turned out not to be the case. While I look back on that situation and know that it was not handled in a professional manner, those words still pierce my soul. That was the day I knew. At the time, I did not want to believe it, but deep down I knew. That was the day that I began mourning the loss of the child that I though I was going to have. Every dream and aspiration I had for my child, in that moment, died. I knew that her life would never be that of a typical child. I knew that the milestones she would be reaching would not be those of children her age. I spent years mourning that child that I though I was going to have.

I used to hide behind this strong, fearless, persona. But lets be real. I spent every day in a living hell, fearing what would come next. My anxiety and depression took over my life, and very few knew that it even existed. I was ashamed to have those feelings. It made me feel like I was giving up on the child that God had given me. Looking back, I know that I was morning. I had suffered a great deal of trauma, and I was dealing with it the best way that I knew how.

It took six months to finally receive a diagnosis. Her bloodwork was sent off to a lab in Chicago. Several months later, I received a phone call from the genetics team that we had followed up with. (Per the nurse practitioners recommendation…) Kaydence had a gene deletion on the NIPBL gene. This confirmed her diagnosis of Cornelia de Lange syndrome. And this my friends, is where our journey really began.

CdLS Foundation website: https://www.cdlsusa.org/

-Brooke 💜

Advocate Like a Mother, LLC

Advocate Like a Mother, LLC offers a free consultation to help you understand how an Advocate could help your child receive the education that they deserve.

Advocacy, Special Needs

Her Heart Stopped and Mine Did Too.

April 3, 2013. The day had come for Kaydence to go into surgery. A surgery that would last 5 hours. My baby was just 4 months old, and we could not wait any longer to have the surgery done. The holes in her heart were making it hard for her to maintain enough energy to eat. I remember arriving very early that morning. Surrounded by family. I remember carrying her to the OR doors. I looked inside the room, everything seemed so big compared to my 6 pound baby girl. I cried walking away from those doors as I handed my baby over to the surgeons who would save her life.

It is a feeling like no other. Fear, anxiety, hopelessness, and anger flooded my body. Why? Why my baby? What did I do to deserve this? Why did God give me this baby? Why would he think that I was suitable to be her mother? Years later, these answers came to me. I began to realize that she was a gift, not a punishment. She changed my life in ways that I never thought possible.

Her surgery went well, and after 5 long hours she was moved up to the cardiac intensive care unit. I though leaving her at the doors of the operating room was hard, I had no idea what was coming when I walked through those doors to see my baby covered in IV’s and monitors, and on a ventilator with a chest tube. It was a sight not for the faint of heart. Her little body was swollen and she was still sedated. I was told that they would take her off the ventilator within a couple of hours. After all of my family who were there came in to visit, they went home after a long day at the hospital.

Everyone left, and it felt surreal. I was not sure what to do with myself. I know that everyone left to give me time to settle in, but that is NOT what happened. Within the hour, every monitor in the room was going off and a flood of doctors and nurses came pouring into the room. I remember screaming, asking what was wrong with my baby. I got no response. And then. These words. Word I will never forget. One of the doctors yells “Grab defibrillators!” I though, right then, that I was losing my baby.

A doctor turned around and told me that he needed to administer a medication to stop her heart for a few seconds and then restart her heart to get it back into rhythm. I have no recollection of what happened next. I stood in silence with tears running down my face. The next thing I remember is a team of doctors pulling me into the hallway to finally explain what was going on. They told me that Kaydence was suffering from junction ectopic tachycardia. A rare condition where the heart goes into a series of arrhythmia’s. Her heat rate remained high for weeks, in the 230’s – 280’s. It was terrifying. They tried several medications, and kept her sedated, as she had to remain on a ventilator. They used morphine to keep her comfortable and sedated.

After about 3 weeks, they decided to place her on a cooling blanket to lower her core body temperature in hopes to slow her heart rate and then be able to raise her core temperature back up to normal. Finally! Something that worked. While this significantly lowered her hear rate, she was still suffering from arrhythmia’s. She was put on a medication to help with the arrhythmia’s. I was told that her heart was just in shock, and needed time to heal.

She was finally able to come off of the ventilator after nearly a month. It was an amazing day! Over the next couple of days we worked on weaning down all of the morphine and sedatives so that Kaydence could finally start waking up, only to realize that she had become dependent on the morphine and would have to go through withdrawals. I am not sure what was worse, the defibrillator situation or having to painstakingly watch my infant come off of an addiction to morphine. Her body would shake, she would scream for hours. At times I would give in and allow a small dose just to give her some relief. And then i dealt with the guilt of giving in.

An anticipated week long stay after surgery very quickly turned in to a 6 week adventure. Not an adventure I ever wanted to go on again. But of course, it was inevitable that she would be back in that hospital many more times.

Over the last seven years, Cincinnati Children’s Hospital and Medical Center has become our second home. While I never want to be there seeing Kaydence suffer through whatever ailments come her way, I do know that we are so blessed to be 20 minutes away from a nationally ranked Children’s hospital, that has saved my daughters life on more than one occasion.

One Year Post Op!

I will place the links below with more information on Junction Ectopic Tachycardia and Cincinnati Children’s Hospital and Medical Center. Thank you all so much for taking the time to read, and follow our story! Feel free to follow our blog, and share our story!

Links:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1502046/

-Brooke

Advocate Like a Mother, LLC

Advocate Like a Mother, LLC offers a free consultation to help you understand how an Advocate could help your child receive the education that they deserve.

Advocacy, Special Needs

Intro. Welcome!

Hello everyone! And welcome to my blog, Catching Kaydence. I am so excited to get this up and going so that we can continue to connect with more people, and share our story.

This blog will revolve around our special needs parenting journey. Everything from our personal journey to resources for families like ours! I needed an outlet. I needed a way to share our story in a way that would reach those who may need to hear that they are not alone. A way to share our story with family and friends, and lastly, a way to connect.

Many know our background and at least a little about Kaydence, so here is the short version. (I will be making a separate blog post to share our story from birth to now). Kaydence is now 7, and oh what an adventure it has been. She is diagnosed with Cornelia de Lange Syndrome (CdLS), a rare genetic disorder, leaving her with significant developmental and intellectual disabilities. She is non verbal, and relies on a g-tube for medications and to supplement liquid intake. Her journey is not one for the faint of heart. My little girl has been through hell and back in her 7 years of life, but she is so strong, and continues to amaze me every single day!

If it was not for Kaydence I would not be where I am today. My passion for the special needs community has grown into my life’s work. I am an advocate for parents going through the IEP process. I have also spent the last 5 years working with adults with disabilities. Lastly, we are adult foster care providers. We decided to open up our home to adults with disabilities and be full time caregivers through a foster care program. All of these things have been such a blessing in one way or another and I can not wait to start sharing with all of you!

Thank you so much for reading! Please take a moment to follow Catching Kaydence so you can be a part of our journey!

-Brooke