Category Archives: cerebral palsy

Letting Go of the Old Me and Embracing the Special Needs Mom Me


I have always been super ambitious. I always had more goals than anyone I ever grew up with and achieved them all. But then came along two little humans that changed everything. My daughter with High Functioning Autism and my son with Cerebral Palsy. My career stalled when my daughter was about 3 years old. I was unable to maintain my small business and handle her at the same time. In hindsight, that was one of the main red flags prior to diagnosis. I quit working all together after my son was born with brain damage. I knew we were in for a journey. Maybe I assumed that journey would end or something.

Fast forward, they were each diagnosed, and two years later I’m still out of the workforce. I convinced myself that I would start a new business I’ve wanted to do for a long time. The business idea is really great. I know the industry like the back of my hand. I have the experience, the education, the drive, everything. But, I can’t do it. And I’m just now coming to terms with it. This business would even allow me to be home most of the time with the kids with weekends away during the Spring. But, I can’t do it.

Autism is not easy to be around all day. Yes, she makes me laugh and I love her dearly. She also hits me, screams at me, puts holes in the walls, and just today decided to peel the paint off of our bathroom walls… again. She talks nonstop and she doesn’t give your mind a moment’s break. Then, her brother is there too. Cerebral Palsy can also have some autism-like symptoms like sensory issues. We spend a large majority of the day helping him to keep his voice in a regular volume level and convincing him that the small spec of dirt he sees is not in fact a bug. He has OCD-like behaviors that we are monitoring and possible seizure activity. He requires thickened liquids and leg braces. They each have weekly or biweekly therapies and all ten (yep, that’s 10) therapists give me homework. I have behavior charts, social stories, shudder activity charts, behavior analysis charts, etc…

By the end of everyday, I’m exhausted. My mind can’t tap into that well of knowledge I used to have somewhere. I can’t just pop into my office and work on building a major business. There are times I stop mid-sentence and can’t remember what I was talking about because the kids wear me down so much. Raising a special needs child is a lot. Raising two of them is worse. I think ultimately though, I’ve been stressing myself out more by expecting myself to merge my old life with the new one. For some reason, today I came to terms with this. I can’t be the old me anymore.

I do grieve the old me. I guess after grieving the loss of the idea of having “typical children” I forgot to grieve my old life as well. It’s gone. I’m tens of thousands of dollars in student loan debt for a degree I may never actually use. But, I don’t regret getting it. I have an amazing entrepreneur talent that I used well for several years, but may never get to use again. I spent my entire life working towards a single goal – I achieved it, but expected it to stay in place. Apparently, that was not God’s plan for me. I’ve been thrown into this life I never imagined for myself. I hope that I can find the reason why He threw me here. Hopefully one day I can use my talents in this new life to help a greater good.

The picture above is a worksheet my daughter did in class. I’m proud of it because it shows her sleeping, her cat, and my husband and me with a heart above. (She didn’t want to include her brother apparently, but we’ll ignore that point for now). I’m proud of it because it portrays a loving home. It’s not much. But, if somehow between all the screaming the kids do, all the pain my son is in sometimes, the pain my daughter feels, the anguish they each go through, the constant therapies, and the constant trials – she feels like she is in a loving family. I couldn’t have created anything better in my old life.


Shoes for Leg Braces, AFOs, SMOs

After my 1 year old son with Cerebral Palsy received his first pair of braces I thought “This isn’t so bad, I can get some shoes around these.” Yep, I was wrong. Even though he started out with the smaller SMOs, it was still hard to get shoes that went around those things. He is now in AFOs (don’t ask me what that mess stands for, I don’t know) and it is even more difficult to find shoes that work. I had a very defeating day in the mall dragging my son to every single store trying to shove shoes on him over his braces. If you are there, this article is for you.

I have not personally tried every shoe I’m about to list. I have included every single shoe that I have tried or have heard from other parents that they have tried and it worked for them. This information is difficult to come by, so I wanted to make it readily available to all parents that need it.

Nike Flyease


Click here or the pictures for the link to all shoes in the Nike Flyease Series.

Nike is my favorite company ever. Nike teamed up with Lebron James to develop a shoe for a fan of his that has trouble tying his shoes due the way his Cerebral Palsy effected his hands. Read all about this wonderful story, The Flyease Journey. However, my child was a 1 year old and needed a very small size and the smallest they offered in the Flyease series was for a 4 year old. After doing a quick chat with their customer service, they told me they would send my request for a smaller size to their production team. Two weeks later, they had smaller sizes listed on their website. (yes, really). I ordered 2 pairs after one got chewed on by a dog. The picture above on the right are my son’s first pair over his braces.

The shoes have an awesome zipper strap that make getting the shoes on so much easier around braces. Not only are they great for people who find tying shoes difficult, but great for parents who are tired of shoving, tugging, shimmying, and shaking their kid’s shoes over their braces. It’s remarkably easy to get these things on. I even see that they now offer options in Wide and Extra-Wide. I used regular, 2 sizes larger than his foot size and they worked great.

Edit  –

I have to mention that thanks to me being such a huge fan of the Nike shoes, they sent my son a special pair of the Lebron 10 Flyease, which isn’t available yet. (And they made them a little bigger than his current size so he would grow into them). I cried when they came in. Not many companies out there are as awesome as Nike for kids and adults with special needs.



Regular Converse All Star Low Top shoes went over my son’s new larger braces (AFOs) perfectly. We could not use the one with a velcro strap because the strap would reach across, but the strings worked out well. We picked up a pair in his size at Kohl’s, but they can be gotten at many department stores and even Target. Converse is owned by Nike, so that obviously gets them brownie points with me.


Converse also made a shoe called the Converse All Star Easy Slip that folds back and allows an easier entry. I haven’t tried them yet, but have heard good things about them.

Cons – The Converse website doesn’t seem to carry them but I have attached a link to Zappos and However, if you google the shoe, several websites come up carrying them in different colors and designs.

Stride Rite


Click here for Stride Rite Boy Shoes in XW and XXW.

Click here for Stride Rite Girl Shoes in XW.

I’ll admit Stride Rite isn’t my favorite. But, many parents would sing their praises. I ended up with the above pair of shoes as the first pair we ever had with braces. My son had his smallest braces at the time. Stride Rite carries XW and XXW sizes that will fit over braces. The selection for XXW is very small and the shoes we had (pictured above) were XW.

Cons – They were difficult to get on and the strap constantly flipped off. I ended up trying to sew it down and extend it, but I’m not the greatest seamstress and so it wasn’t a great plan on my part. The shoe itself was hard and if you’ve ever been kicked or had your toe stepped on by a kid with braces, you know what I mean. These shoes hurt. But, they worked at the time. However, with all the other choices, I probably won’t be back. (I also think Stride Rite shoes are mostly ugly, but that’s my own opinion).



Click here for Kids’ Crocs.

Crocs are the best. I’ve gotten the Kid’s Classic Croc and it’s perfect when you’re in a rush. Are Crocs the cutest shoe out there? Not at all. But when they’ve got Ninja Turtles or Pink Sparkles, then who cares? Like Converse, these are also easily picked up in most department stores and Amazon.

Quick Tip to get them on – Push the strap down past the heel of the shoe to make a clear opening, slip the shoe on, then pull the strap up behind the foot.

Cons – Be careful not to get a Croc with a significant arch in the sole. Most of the shoes listed here can have their soles removed, but on the Croc its not possible. Arches in shoes can cause heavier in-toeing, so be careful with your selection. Get as flat as possible in all shoes.



Click here to visit PLAE Shoes’ website.

I have not gotten to order a pair of these yet, but they appear to be awesome. Their designs are great and their customer service can help you in choosing the best style to go with orthotics. What makes them unique is their extra long strap option that makes getting shoes on orthotics much easier, not to mention you can make those straps custom. Their shoes are also lightweight and flexible with removable insoles. They have a ton of cool designs that I can’t wait to try. Finding cute shoes for AFOs are difficult and I’ve heard some rave reviews on these.

Keeping Pace


Click here for the Keeping Pace website.

Keeping Pace is a company dedicated to making shoes only for orthotic purposes. The shoe shown above has an easy back entry to make getting on and off easier.

Cons – I’m not loving their styles as they are very generic and bulky. Their prices are significantly higher than the other shoes listed and you can’t order online, you have to call in. I don’t think I’ve made a “phone order” since 1997 (my mom did it). But, since they serve only our orthotic community, I felt they were worth mentioning.



Click here to view Hatchbacks Footwear.

Hatchbacks is another company serving only the special needs community. Their shoes are cuter than Keeping Pace and you can order online. Their shoes offer a back entry that is so helpful.

Cons- Their options are limited and their prices are also a little steep.

Stonzwear Boots


Click here to check out Stonzwear Snow Boots.

You focus on getting shoes that fit… and then it snows. Boots are impossible to get over braces most of the time, so I had no idea what to do whenever it was snowing. I wanted him to be able to play outside too. And then I found out about these babies. You just pop them on right over whatever shoe he/she already has on, pull the cords and boom! You’ve got a snow boot over their dang braces. Do you have a shopping bag over their shoes to keep their regular shoes from getting wet? No. You are a super parent and have these cute little things on them. I personally will be getting the fire trucks for next season.

Cons – You haven’t bought them yet.


  • Answer 2 Shoes are specifically designed by Apis Footwear for orthotics, click here for Answer 2 shoes.
  • K-Swiss is reported to work as long as they have a flat bottom. They offer wide and XW sizes for kids, although those particular options don’t offer the cutest of styles. Click here to view wide K-Swiss.
  • New Balance also offers wide and XW options, and like K-Swiss, you would need to make sure they are flat. They have more XW options than K-Swiss. Click here to view XW sizes for New Balance.
  • Smartfit shoes by Payless have been reported as helpful. Obviously, they are on the cheap side which is awesome and they have several wide options. If you are in search of dress shoes for boys, this is where I would recommend that you start. They have a couple for girls, but they are not the cutest. Click here to view Smartfit by Payless in Wide sizes.


I am not a fan of paying $13 for one pair of socks for a now 2 year old. But, I will list the places I have heard of for people who may have trouble finding socks elsewhere or need them for a specific reason. Remember to speak with your orthotist if there is ever any redness or rubbing from braces. It may not be the socks.

I have used socks from Target and Amazon for my son. When he went up a higher brace, it was a little harder to find knee-high socks for a 2 year old boy (they have a ton for girls and they are adorable). But, all you have to do is search Amazon for ‘toddler boy knee high socks’ and the latest collection will come up. Our local Target store carries knee high socks for Toddler Girls. Once he gets above 3 years old, it will be easier to find. Almost all athletic brands, such as Nike, carry tall athletic (soccer) socks that go to the knee or above and they carry them in many department stores. They just don’t have soccer knee socks for 2 year olds. Bummer.

Click the following links to check out socks made specifically for use with braces.


Hope this helps in your Braces Shoe Search. Leave a comment if you’ve got some more ideas that can help other Special Needs Parents!!!


Why the Special Needs Community Should Be Worried in a Trump Administration

One Election Day, America changed. We elected a man who had made unprecedented statements regarding people from all walks of life. I will hold off on my opinions on building the wall and grabbing women by the pussy as much as I can. My focus here today is our Special Needs community. My back story involves a child with Autism Spectrum Disorder and another child with Cerebral Palsy. I hope to do all disabilities justice in this article, but I admit my knowledge is limited as a special needs parent to these specific situations. To be completely transparent, I am a liberal democrat. I was called a “libtard” during the election season and would like to give an early FU to anyone who wants to use any version of the word retarded. It’s not nice. Don’t say it.

Worry #1 – Repeal of the Patient Protection and Affordable Care Act (aka Obamacare, for those of you that didn’t realize they were the same thing)

One of the most important provisions of ACA is “guaranteed issue” which prohibits insurers from denying coverage to individuals due to pre-existing conditions. Health insurers can no longer charge more or deny coverage to you or your child because of a pre-existing condition like asthma, diabetes, cancer, cerebral palsy, or autism, diabetes, high blood pressure, or even pregnancy. It is unclear what Donald Trump plans to do. He has stated previously that he would like to keep insurance companies from denying people coverage for preexisting conditions, but as we have seen so far, he doesn’t always keep his promises. Luckily, the Obama administration has put several protective measures in place to make it difficult to repeal this particular part of the law right away.

How the repeal already makes my life hell. – My husband’s employee covered insurance is a loop hole in the Obamacare regulations and was already a loop hole well before the election season happened. The company has what is called an “employee-brokered health plan” meaning they made a deal with the insurer to cover the costs and it allowed them to not follow the Obamacare provisions. But, to keep from having a full blown riot, they generally followed the provisions anyway. Then, my kids got diagnosed with disabilities. Then, they had to have multiple weekly therapies. Then, Obamacare required insurers in my state to offer ABA therapy to children with autism starting January 1, 2017. Then, the election happened. Then, Donald Trump won and swore to repeal Obamacare. Then, my husband’s employer raised his premiums by $100 per month due to the high cost of covering our children. Then, they refused to cover ABA on January 1, 2017. Then, after waiting for months to reap the benefits of ABA for my autistic daughter, we can’t get it.

I worry that “Trumpcare” will leave my children behind in favor of the insurance companies making more money again. My children cost them money and lots of it. Money I don’t have.

Worry #2 – Education and the Individual with Disabilities Education Act

The Individuals with Disabilities Education Act (IDEA) is a piece of American legislation that ensures children with disabilities receive the same opportunity for education as those students who do not have a disability. Whenever I went into my first IEP meeting, I was afraid due to the horrible experiences I had read about. My husband and I specifically moved 1,000 miles away from the only home we had ever known to get a better life for our children. The county we moved to brags on its high schools that have at least 3 in the top 10 high schools in the United States depending on which list you look at. Their academics are outstanding and their opportunities are plentiful. The elementary schools in the area are equally as impressive and my daughter’s school campus rivals my undergraduate school. Had we stayed in our old area (very rural, deep south) our daughter would have been kicked out of school due to behaviors related to her autism. I worked as a teacher in the school system and the special education there was severely lacking as is there regular education, so they keep it even. When I left my IEP meeting at my daughter’s new world-class school, I was satisfied. That’s all.

There is currently a U.S. Supreme Court case regarding a special-needs student in Colorado. The question in the case is basically: What level of support are public schools required to give to pupils with special needs? IDEA requires that federal funded schools have to offer “free and appropriate education” to disabled students. The Colorado student in question has Autism and his parents stated that the public schools plan was to just pass him from grade to grade. The parents felt that this was not “appropriate education” citing their experience with a private school that their daughter showed tremendous growth in. The decision could change the lives of many special needs students across the country. If my daughter goes to a school that provides exceptional education services to all of their students, I expect my daughter’s situation to be the same. Currently, its as if they are just buying time to push her through and not help her behavioral issues as much as they can. Am I getting a better situation than most parents with special needs kids in school? Absolutely. But, it’s still not right. People shouldn’t have to move to get a better education for their kids.

Which brings me to Trump. And M-Effing Betsy DeVos

Betsy DeVos. Learn her name. Know her name. Know it well. Donald Trump nominated her to serve as Secretary of Education. She was born into a billion dollar family. She never attended public school. Her children didn’t attend public school. She, nor her children, nor her parents have ever taken out a student loan. During her confirmation hearing, she was slammed by the democratic senators.

Senator Tim Kaine asked Ms. DeVos if federally funded schools should be required to meet the requirements of IDEA. Her response – “I think that it is a matter that’s best left to the states.” Senator Kaine then stated “So some states might be good to kids with disabilities, and other states might not be so good, and then what? People can just move around the country if they don’t like how their kids are being treated?” Her response again – “I think that is an issue that is best left to the states.” He continued by saying “It’s federal law.” Something she clearly didn’t understand entirely and later admitted to being “confused” by it when questioned further by Senator Maggie Hassan, who has a son with cerebral palsy. Senator Hassan asked Devos “Do you think families should have recourse in the courts if schools don’t meet their needs? Devos replied by saying “Senator, I assure you that if confirmed I will be very sensitive to the needs of special needs students.” Hassan stated “It’s not about sensitivity, although that helps. It’s about being willing to enforce the law to make sure that my child and every child has the same access to public education, high-quality public education.”

She has the potential to put many special needs children in danger of not receiving the education that they already struggle to get at an acceptable level. If it is left up to the states, it could be disastrous for many families, especially in lower-income states.

Worry #3 – Donald Trump and his blatant disregard for human decency

In November 2015, in the beginnings of his outrageous campaign, Donald Trump openly mocked a well respected New York Times reporter, Serge Kovaleski, who has arthrogryposis, a congenital condition affecting the joints. Kovaleski contributed to reporting that won The New York Times a Pulitzer Prize for its investigation of the Eliot Spitzer prostitution scandal, but is now better known as the disabled guy Donald Trump made fun of.

Despite your political views. Whether you are pro-life or pro-choice. Pro-universal healthcare or pro-privatization. Democrat or Republican. Can we all agree as members of the disabled community, that making fun of someone with a disability is bull shit? And if anyone, President or not makes fun of my disabled children I will become a raging beast woman.

Election Night was hard for me. Teaching someone with Autism social situations is difficult. Teaching any 6 year old social situations is difficult. But, you try to teach them right and wrong, good and bad. My son is only 2, but she recognizes that he is different physically. Van Jones of CNN broke my heart the night of the election. I was watching live when he stated “It’s hard to be a parent tonight for a lot of us. You tell your kids don’t be a bully. You tell your kids don’t be a bigot. You tell your kids do your homework and be prepared. Then you have this outcome.”

One day, I will have a hard conversation with my daughter about why the President of her country made fun of someone with hands like her brother. One day I will have to explain it to her brother. One day, they will be bullied because the President made the culture less sympathetic to social ridicule of all minorities including those with disabilities. This may seem like such a small moment when a man made fun of another man. But the social and cultural reach of this is dangerous. The life our country was building for our children will not be the one we envisioned for the next 4-8 years and maybe more. “Make America Great Again” is a dangerous slogan for people with disabilities. In the past, they were put in buildings and avoided for education and institutionalized for lack of a better option. It costs our government billions of dollars to support our disabled. I’m sorry if I don’t trust a billionaire who doesn’t pay taxes to protect that support.

I cried in from of my daughter the next morning. She just went on about her business since she doesn’t get emotions at all. I was a teenager when 9/11 happened. I lived in South Louisiana during Hurricane Katrina and Hurricane Rita. I graduated college in 2008 and entered the workforce during the worst economic times this country had seen since the Great Depression. After coming from a racially divided and charged area, it was refreshing to have a black man become President and speak of unity and hope. I have worked as an Investigator for Child Abuse and was impressed by the work Clinton had done in protecting those children. I had prepared to tell my daughter that a girl won the Presidency of the United States. Instead, I don’t know what to tell her. I was excited when she made a friend at school. Parents of children with Autism know that’s a big damn deal. Her friend is Hispanic. Her parents are immigrants. FML.

Today is our last day in the Obama administration. Godspeed everyone. Fight for your children and your lives. And good luck. We’re going to need it.

I Know My Kid Better Than You

I Know My Kid Better Than You

When well-meaning medical professionals do more harm than is already there. Our journey to my son’s Cerebral Palsy diagnosis.

My son was a miracle. The doctors couldn’t tell me why he survived the horrific birth that he had. He was dead when they delivered him from a severe birth complication called Vasa Previa. His cord that was formed improperly broke in half during delivery and caused him to lose 90% of his blood volume. After 5 minutes of CPR and blood transfusions he was able to hold his own heartbeat. They told us the first 24 hours would be crucial and they couldn’t make any promises.

During those 24 hours he did great. The following 11 days in the NICU defied all expectations and he had no further complications. There was more talk about God from men and women of science and medicine than I had ever experienced. I think we left the NICU with several of them converted to Jesus if they weren’t already. And we weren’t trying to talk to people about God, we were just a living testimony of the power of faith.

During the stay, many nurses started the “He is going to be fine” speeches. “He is doing so good” we heard as we stared at our child on a cooling machine that drops his core temperature for 3 days to avoid further damage to his brain due to the blood loss. Deep down, as parents, as a mother I knew he wasn’t fine. But, in their defense, he wasn’t crashing and needing constant resuscitation like the 1 pound baby next door to his NICU room. At 8 lbs 4 oz, my son was a monster baby compared to the others in NICU. This made him appear healthier. I will forever thank God for the most experienced Neonatologist working my son’s case. He was the one that continuously warned us that though our son was okay right now, he may not always be. He could not pinpoint exactly what problems could arise, but like my own gut told me, he could also foresee a problem. After an MRI showed mild brain damage, that confirmation was there in my mind and this neonatologist. I asked if Cerebral Palsy was a possibility and he said there was no way to know right now. However, we still had another neonatologist and several nurses telling us as we left the NICU that brain damage can “fix itself sometimes” and “he is going to be fine.”

We set up services with a pediatrician just like you do with any child. He also went the “he is fine” route. He was choking on his milk and really struggling to keep liquids down. He diagnosed him with reflux and had us give him medication for it and thicken his milk with oatmeal. At the urgency of a cousin, we switched to her practice and started seeing her for pediatric care as she was a nurse practitioner and trained under our favorite neonatologist in the very NICU that our son was. She did an analysis of the MRI results and decided too that he was going to be fine.

Fast forward to about 6 months of age and he started crawling. He did it a little strange. I immediately started googling because it’s how I cope with the unknown of my child’s condition. My options were normal, autism, or cerebral palsy. I knew it was CP presenting itself. He also had these jerking motions when he would eat and at random times. We drove 4 hours to a pediatric neurologist and he showed no seizure activity and the neurologist said the likelihood of Cerebral Palsy was low and his shaking movements would go away in a month or two. After this we moved across the country for better medical care and for my husband’s new job. We started setting up appointments with a new medical team for our son.

Whenever he was born, his brain damage was classified as Hypoxic Ischemic Encephalopathy or HIE. We found a neurologist that had conducted a study on HIE babies and the following effect. We scheduled an appointment with him. He disagreed with the previous neurologist’s assessment of CP being unlikely and literally chuckled when I told him that he said the shaking would go away in a couple of months. At this point it had been 4 months at it was still happening. Our new neurologist set us up with a rehabilitation specialist and the NICU developmental clinic at one of the top children’s hospitals in the country.

We met with his new pediatrician which was very highly rated and seemed well received in the medical community. During her first appointment with him she said quickly “Oh no, he doesn’t have cerebral palsy, these movements are probably just stereotypies that will go away and his crawling his right on time and perfectly normal.” In her defense, I realize that she has parents that call her in the middle of the night over a hang nail. But this was not a hang nail. She recommended we contact the state funded early intervention program because of his birth history. She also stated that we didn’t have to worry about thickening his liquids anymore when he turns a year old since reflux resolves itself around 12 months of age.

We met with the rehabilitation specialist and discovered that she is one of the foremost physicians in the field of Cerebral Palsy, the former president of the American Academy of Cerebral Palsy, and a Goldstein award winner from the United Cerebral Palsy Foundation. So basically, she’s the CP Rock Star doctor. She quickly diagnoses him with Hypertonia and wanted to monitor him closely as he developed to watch for the formation of CP. She ordered Physical Therapy to start at 10 months of age.

He started walking at 13 months old. Developmentally he was doing great, everything on time. But just like with crawling, his walk was a little strange. He had a slight limp and his toes started turning in. At an appointment with the neurologist he said that he had Cerebral Palsy but he didn’t want to put it on paper until he was 2 just to be sure. Whenever Early Intervention came to my home with 2 social workers, a developmental screener, and physical therapist, and occupational therapist, and a speech therapist I had the worst experience I’ve had so far. The physical therapist said that she completely disagreed with the neurologist’s concerns about cerebral palsy. She disagreed with his physical therapist’s choice to put small braces on his feet for support. His regular PT had been working with him for months at this point and had made great progress with him. Each one of them said he was fine, he did not have any problems and our case was denied. (His diagnosis of HIE on paper alone should have qualified him).

I’m going to stop here and insert my rant. Most of the people who have told me “He is fine” at this point were the least experienced people in terms of neonatology, neurology, and Cerebral Palsy. No nurse should ever downplay an experienced doctor’s assessment of a patient. Nor should a pediatrician give a parent false hope that their child is fine when a world-class neurologist or experienced neonatologist disagrees. Pediatricians should not disagree with a specialist in their own field. NO and I mean NO physical therapist, occupational therapist, or speech therapist should EVER disagree with a doctor’s assessment of a patient. I have relied heavily on my instincts and I shudder at the thought of what could have happened if I just wouldn’t have. What if I would have stopped when the first pediatrician said he was fine. I wouldn’t have worried about finding him a neurologist who was an expert on his type of brain damage. That wouldn’t have led me to the doctor that prescribed his first bout of physical therapy. That physical therapy helped keep his hips aligned and helped him gain the strength to walk.

My son started experiencing pain regularly around the time Early Intervention denied us. We got the braces and I hoped that they would help with the pain. They did slightly but not completely. He was waking up at night with what seemed every muscle in his body flexed and I could lift him and he be as stiff as a board. His legs were very tight. His whole body would grow rigid. He screamed so much. I cried so much because I didn’t know what to do. His hands were being held in the strangest positions. I called the pediatrician and she said to give him Tylenol. (Like I wasn’t already giving him the highest dose allowed or something). I was horribly depressed during this time because I was watching my son in pain and I could see him physically deteriorating in front of my eyes.

I took him to an orthopedic doctor who said his scan looked fine. She also said that he probably had Cerebral Palsy and I needed to touch base with neurology. Our neurologist sent us to our CP rock star and we got an appointment with her. I was still very confused by which doctor handled which situation at this point. If somebody would write a book on special needs parenting, they would become very wealthy. I would do it, but I’m an idiot on the topic.

Finally get to rock star doctor and she diagnoses him with Dystonic Diplegic Cerebral Palsy. She ordered speech therapy and occupational therapy to accompany his physical therapy. She knew that based on his symptoms he would eventually develop a speech delay. He has a swallow study ordered and they discovered that his thin liquids were penetrating the wrong area of his throat and he suffered from dysphagia. He now has all his liquids thickened and he no longer chokes when he drinks. She prescribed him with a medication proven to reduce pain and muscle tightness in patients with dystonia and his life has been so much better. He no longer screams in pain daily. He doesn’t wake up at night stiff as a board anymore. His OT figured out that his hand movements were mostly sensory related and as long as we let him play in messy textures, his hand movements remain normal and untight. At 18 months old he now has a speech delay just like the rock star predicted. She knew that the brain damage he sustained and shows symptoms of regularly follows with significant speech problems.

What if I had never made it to that appointment because I chose to believe the wrong people? What if those people didn’t brush off each patient or parent as being paranoid googling hypochondriacs? What if we expected more from every medical professional and not just the highly decorated ones? My son’s type of Cerebral Palsy is one of the more uncommon types but that doesn’t excuse the professionals that disregarded me when my son showed symptoms of something abnormal from the beginning. I understand that we don’t want to create something that isn’t there. But, disregarding a parent or patient’s concern is unacceptable and I have experienced it all too much. I spent my entire pregnancy with him trying to convince 2 different OBs that something was wrong. It wasn’t until I bled out on the table that they believed me. Why does it take blood to convince someone? Why does it take a child in pain for a month before finding someone to hear that it’s not “just teething”? We should all expect more. I will forever respect and thank the doctors that saved my son’s life and mine. I am forever grateful for the doctors that told me the truth. I feel as though there are 3 doctors, 1 physical therapist, and 1 occupational therapist that have been wonderful, caring, experienced, knowledgeable, and useful in my son’s life.

There have been a total of 15 medical professionals that could have hindered his progress, ruined his physical being or ended his life before it began that include – 2 OBs, 2 NICU nurses, 1 Neonatologist, 2 Pediatricians, 1 Nurse Practitioner, 1 Neurologist, 1 Developmental Screener, 2 Physical Therapists, 1 Occupational Therapist, and 2 Speech Therapists. They all said he would be fine. They all said he didn’t have Cerebral Palsy. They all blamed his symptoms on something unrelated and treated him improperly. What if I would have listened to this group and not the other?

Based on my observation of his condition for 24 hours a day 7 days a week I can tell you. He wouldn’t be able to walk anymore because the tightness in his legs would have overcome him without the medication he is currently on. He would be exhausted from getting through the day in excruciating pain that Tylenol can’t help. Without the physical therapy he received, his tight muscles could have caused his bones to grow improperly and caused more pain and less mobility. His hands would have cramped into a position that would make him unable to grasp objects such as food and drink. He could have injured himself by now from the involuntary body movements that put him in awkward positions and make him a fall and injury risk. He would be unable to drink and would have been hospitalized for pneumonia or aspiration.


Always follow your instincts.