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.


Making Extra Money as a Special Needs Mom


We’re all broke. All of us Special Needs Parents… we’re broke.

On top of our regular, normal people bills we also have a mountain of medical bills, therapy bills that rack up weekly, and orthotics that can cost more than some cars. I also am recommended often to invest in sensory items that seem to cost 10x what they really should cost and don’t last very long or get broken.

My husband took on the responsibility of being the sole working spouse when we had our son and he was born with brain damage. We knew he would have problems but were stunned when our older daughter turned out to have High Functioning Autism (or the artist disorder formally known as Asperger’s). We’ve got an Aspie in Kindergarten and a toddler with Cerebral Palsy. I’ve got a degree and was a small business owner. Now I’m a walking, talking medical record that spends time going back and forth to therapy appointments, doctor’s visits, and late-night grocery runs.

I have been out of the work force for 2 years now and its beginning to take its toll on my mental health. I love being able to manage the care of my children because I know how important it is at this age to get as much intervention as possible. I’m a micromanager by nature so I’m paranoid about my kids’ care. However, I have many talents that I spent my life accumulating that have absolutely nothing to do with all the medical terms I deal with daily. I miss being able to contribute financially and having time for myself. I know stay-at-home-moms struggle with this often and we all know that being the sole caregiver of a special needs child or children can make you lose yourself at times.

I went on a search to find something I could do at home. I’ll spare you all the scams and “too good to be true work-from-home” jobs and get down to the point.


It’s perfect for us Special Needs Parents who have a schedule more detailed than the FBI Director. We can’t commit to things that traditional jobs expect. Even customer service jobs that can be work from home through a company like Amazon is impossible for most of us. I can’t imagine having to be on the phone with a customer while my two auditory sensory seeking kids are screaming at the top of their surprisingly strong lungs.


There are sites similar to this, but I was so happy with my progress on Upwork, that I just stuck with it. Upwork is a network of clients needing odd jobs done and freelancers like us that want to do them. I set up my profile and started searching for job postings. You can find small jobs that can be done in a reasonable time frame at your own leisure. They have fixed pay jobs and hourly pay jobs. I read somewhere that starting out with fixed pay jobs is the best way to get know how things work and I highly recommend it. Search for jobs that fit skills that you may have. You submit a small cover letter explaining why you would be good fit for the job and how much you would charge. Upwork charges a 20% fee (it lowers if you stay with a client longer) and that is high, but it keeps the site legitimate and scams out of the way. So I’ll take it.

On my second day on Upwork I was accepted to build a Powerpoint on a few businesses’ organizational charts. A few days later after I finished, my project was accepted and I was paid. There is a 5 day holding on Upwork, so I received funds in my bank on the 6th business day after the project was approved by the client. Since then I have written a Sociology paper (it was my major in college) and I have done market and internet research for businesses and organizations. I made a great relationship with someone running for local office and I’m helping him now with his campaign after writing a research report for a documentary he was proposing. I also got hired on an hourly position to do virtual assistant work for a business like the one I owned before becoming a Special Needs Parent.

In my first month with Upwork, I made $900 picking up odd jobs that I can do during nap times and after my husband comes home. I am on pace to clear $1500 in my second month. I keep my computer with me and do my work in the lobby while my kids are in therapy. I search for jobs and message clients on my phone with the Upwork app in the waiting rooms of the doctors offices. It is perfect for caregivers that need the extra money and need to remember who they are. Yes, caring for our children is a blessing and will bring us unending joy, bla bla bla. But, really… I worked really hard before my kids came along and I don’t want to lose every single part of me. (And I’m clearly not going to lose my student loan bills). My primary focus is my children and still is. But, now I can buy myself some makeup when I order my kid’s liquid thickener off of Amazon.

Click here to check out Upwork.


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 shoes.com. 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.

The Misunderstandings of Autism

My daughter was always… um… what is that word I read once… “strong-willed.” Difficult, high-maintenance, and artistic are all terms that have been used to describe my child. Everyone who knew her loved her. Family, friends, teachers all loved her. Her vast early vocabulary made her an adult favorite. She could have an argument that could rival a well trained lawyer at 2 years old. She enjoyed singing and playing the piano very early. She became obsessed with play doh as soon as she got her hands on it and could make some amazing things with it. We knew that lining up her toys in a specific way was a little odd but I read that it was fairly common for kids her age. I also just assumed that not playing with dolls was just a part of her personality. We thought that when she was reciting every word to a Disney Collector Egg Surprise YouTube video that she was just watching it too much. Or that when she was reciting every word to a conversation she witnessed between her teacher and another student getting in trouble was just her trying to be like a teacher. Every kid wants to be more like their teacher, right?

It was several months after she started Pre-K when she started saying that the other kids don’t play with her. We spoke to her teacher about it and her teacher said that she’s just different than the other kids and likes to do her own thing. We just went with that and moved on from it. Then I was watching an episode of Parenthood and broke down. Max, a character in the show, is a child diagnosed with Asperger’s. Asperger’s is a term that is now moved under the Autism Spectrum Disorder umbrella. My child wasn’t just like Max but she had much more similarities to Max than she did any kid at her school. I just decided that I was freaking out, she’s fine, and I stopped watching Parenthood (great show by the way).

Fast forward to a cross country move at 4 years old, not being old enough for Kindergarten in the different state, and disrupting everything she had ever known. We started her in a Pre-K program and quickly realized it wasn’t going to work for her. The teacher was inconsistent and would say “We’re going to paint today” and then wouldn’t paint. My daughter didn’t handle that well at all. She went four days a week for 2.5 hours. Three out of the four days I would pick her up and she would start crying in the car. We decided to pull her out whenever she back talked to the teacher, something she had never done to another adult before. She wasn’t coping with change well and having meltdowns more frequently; we were beginning to accept that something was wrong.

I kept her at home to try and figure out what was going on. After talking to the pediatrician and 2 social workers, I finally found a professional covered by our insurance that could help us. We met with a clinical psychologist who asked me to go through everything from as far back as I could remember. I had wrote down every concern from the moment she was born until now. I reminded him that she was my first child and many of the concerns I had could very well be normal. He listened as reality set in with every single thing I listed including but not limited to: not sleeping more than a four hour stretch until she was 2, being argumentative, having severe meltdowns where she is screaming for 20 minutes straight over nothing, inability to share appropriately for her age, playing next to kids but not with kids, repetitive, imaginary friends, low self-esteem, biting nails until they bleed, intense sense of smell and hearing, dictates conversations, and very literal. After I went on and on for almost the entire session he finally said “Did we talk about the possibility of Autism when we spoke on the phone previously?” And I knew. My first instinct when I watched Parenthood was right. He diagnosed her with Autism Spectrum Disorder but said that Asperger’s is the appropriate term for her.

What happened after this changed my view of people and society in general.

The reaction from my husband’s family and mine was horrifying. We were basically told that her being autistic is ridiculous, we were hypochondriacs who were obsessed with doctors, all psychologists are quacks, there is no such thing as autism, and she just needed to have her ass beat then she would act right. These things were said by people we cared about. People who were supposed to be there for us in this difficult time and not blaming this on our parenting skills.

My husband and I were both the youngest in our families. We both have older parents and two older siblings. We were born into a different type of world than that of our parents and siblings. We exited college into a recession that made it impossible to follow the traditional route of employment that our families experienced. We were friends with people of all colors, religions, backgrounds, and sexual orientations unlike the rest of our families had.We were the first parents in our families that didn’t spank our children. We did this against how we were each raised and based on every bit of research we could get our hands on regarding the matter. The research showed us that spanking was making behaviors worse, not better. I was also the first to breastfeed. Another thing that caught intense backlash from both sides of our families. They were from the generation that was told formula was better, and again, research denounced that and I wanted what was best for my child.

In a search for the reasoning behind their horrific reactions, we have tried to find the source of their misunderstanding. What we believe (or have chosen to believe) is that there is a mass misunderstanding of the term ‘autism’. When people hear the term ‘autism’ they expect to see a child in the corner rocking back and forth, walking strangely, and having a low IQ. This image that people have in their head that was planted there by God only knows what has greatly hindered the public’s image of people on the autism spectrum. Yes, there are kids who are severe, non-verbal, and have low IQ’s. But, there are also kids who have abnormally high IQ’s, extensive vocabularies, but have trouble in many areas of their daily lives.

My daughter has an above average IQ, is greatly obsessed with play doh and any type of sensory goo that she can play with, and is the same person she was before the term ‘autism’ was applied to her medical chart. I am not ashamed of that label. I don’t tell everyone I see about it. Only those close to me and my child and any professionals that need to know. I’m getting her the help she needs to be able to navigate in this world appropriately. I’m giving her the tools she needs to learn how to make friends because it doesn’t come naturally to her. Her doctor was able to find the right medication for her so she wasn’t screaming like she was being tortured for over an hour every day during her sensory meltdowns. After hour months of treatment she does not have meltdowns anymore thanks to the appropriate medication, she can share now thanks to her amazing Occupational Therapist, she interacts with kids much better and is living a much happier life now that her differences are being addressed.

We had one family member step up, my mother. She flew to see us and spend time with my daughter and son (also newly diagnosed with Cerebral Palsy). Before she left she told me that I was right to seek help. She couldn’t believe it at first, but now she does. She made an effort and is being very supportive. She FaceTimes with the kids every weekday and stays up-to-date on their therapies and improvements. Both of my siblings have stopped talking to me. When I try to help them understand they refuse to listen. They don’t believe the research and advancements that have taken place in the mental health field. They no longer have any interest in my children whatsoever. I’ve decided that it’s okay. I don’t want people like that in my children’s life. It’s disappointing nonetheless.

I know that there are more people out there like the family members who have been against my daughter’s diagnosis. People who make fun of children and adults with disabilities. The bullies.The ignorant. Their culture is not an excuse, but improving the culture we live in could help another child in the future. Educate yourself. Have empathy and hold your tongue when you don’t know what you’re talking about. You don’t know that when you told that mom “You need to spank her for acting like that” that she spent an hour sitting on the floor holding her child while she was screaming and hitting herself during a meltdown. Spanking does not fix autism. You don’t know that when you told that mom “You just need to put her in school and go back to work” that the mom sacrificed her career for her children and mourns that career everyday but knows that if she would have went back to work her child would have probably been institutionalized by now. You don’t know the guilt you make the working mom feel when you tell her “You are going to have to stay home with your kid because nobody else can handle her.” That mom is working to financially provide the care that her child needs.

“God blesses those who are persecuted for doing right, for the Kingdom of Heaven is theirs.” Matthew 5:10

Hang tight special needs moms and dads. Karma is a b****. (I just can’t spell it out following a Bible verse. But, you know what I mean)

Welcome to NICU

I didn’t exactly have the greatest first pregnancy. I had constant infections, a gall bladder full of stones they couldn’t remove, and stretch marks that made my stomach resemble something that had been attacked by a lion. She arrived as healthy as she could be though. It was 3 years later when the stick had a plus sign on it again. I really had a form of PTSD following my first pregnancy. (I’ve Googled it before, they are starting research into mothers with painful deliveries suffering from PTSD). My current self, post-second baby laughs at my former self, post-first baby.

I knew something was wrong this time around. From the very beginning my instincts were on point. My husband was really excited and wanted to tell everyone. I asked him not to because it was so early and I knew something was wrong. We had taken the test as early as it could read and I was about 4 weeks pregnant. We actually ended up fighting about it because he was so overcome with joy and I felt nothing but fear. I remember distinctly telling him “Stop being happy, something is wrong.” Who does that? Who tells their awesome spouse to stop being happy? I was such a bitch about it. (Eventually I was right, but at the time, I could have chosen my words better).

I called the doctor and they didn’t really see patients until 7 weeks but I knew I had to get in sooner. I called over and over and told them that something just felt wrong and eventually I said that I was having cramps. Finally, the OB ordered blood work and it came back with dangerously low progesterone levels. She said that my body would miscarry without supplementation. So I started on hormone supplements for 4 weeks. I had an ultrasound at about 8 weeks and it was the cutest thing ever. It looked like he was waving at me. I went home and felt better about everything than I had since it started. Then I woke up at 3am gushing blood.

I was sitting in the bathtub sobbing. I knew I was losing the baby. I just knew it. I remember saying to my husband “I finally allowed myself to love it. I love it. It can’t die.” He called the OB’s emergency line and she told us to go to the ER if we wanted to or we could let the baby pass at home. We chose to go to the ER after dropping our older child off with my parents. It was a very scary drive. I had stopped bleeding though and that was a good sign. They did an exam and my cervix was closed and then they did an ultrasound and there was a heartbeat. The baby just didn’t move much. This entire story happened again at 12 weeks. The bleeding just started during the day instead of at night. Heartbeat good, baby just not moving much.

I decided to switch OBs and get to one a little closer to home (even though it was still an hour drive). We found out we were having a boy. But, my blood pressure started creeping up with each visit. The second trimester was fairly uneventful other than the impending feeling of doom I constantly felt. By the third trimester, my blood pressure was concerning enough to warrant a weekly ultrasound. Each one was uneventful, he was big and didn’t move much. At my 38 week ultrasound they found that the cord was wrapped around his neck twice, possibly a third time and the OB felt it was time to induce. So we scheduled for a few days out.

We checked in on a Thursday morning and I was prepped. We were going to go through with the natural delivery since the doctor felt confident it was the safer option and he could unwrap the cord during delivery. They had set up a nice area for the baby to stay in our room after the delivery. During labor the baby started to show signs of distress. They had me lay on my side to help blood flow but it was not improving. The doctor came in and decided to break my water. I had dilated and was progressing well. He broke my water and what started out as a gush of liquid became pulses of liquid. The doctor told the nurse “We have a lot of blood here” and then he muttered some other things quickly. He put his hand on my leg and said “You’re going to have a C-section now.” Then he ran.

Nurses started appearing from everywhere. Everything happened very fast after this. I remember a nurse telling my husband that he wouldn’t be able to go in because they were going to have to put me to sleep. They started pushing my bed as fast as they could towards the Operating Room. It’s cold in there. There were at least 20 people in the room once they got me in there and only 3 minutes could have passed since I started gushing blood. I’ve always been good at reading people. During a job training I was certified in micro-expressions, the study of people’s emotions as shown on their face. As I looked at the 20 something people scrambling around my hospital bed in this very cold operating room, I’ve never seen so many faces plastered with fear before in my life. I knew then that I was in trouble. The anesthesiologist had put the oxygen mask over my face and told me I would be asleep soon.

I prayed. I told God that my husband couldn’t make it without me. And I couldn’t make it without this baby.

Looking back now I realize that my instincts and my faith in God are the only reasons my son and I are alive today.

I had a button that administered some pretty nice medication after surgery. That nice medication made everything awful blurry after that. What I can tell you is from the accounts of my husband, the doctors, and my medical records. I suffered from a rare pregnancy complication called Vasa Previa. When undiagnosed, it is almost always fatal to the infant. Because we didn’t know we had Vasa Previa at birth, my son had a 5% survival chance. Think of an umbilical cord as like an electrical cord. Without that protective covering, it would just be exposed wires. Vasa Previa is like having exposed wires and the amniotic fluid (the water) is all that kept it intact. Once the wires were exposed, all blood is lost from the baby. I was officially diagnosed later with Ruptured Vasa Previa, Placenta Previa, and Placental Abruption.

The amazing medical professionals got my son out within 11 minutes of the rupture. He had lost approximately 90% of his blood volume. He had no heartbeat. The nurses compared his color to that of an ashtray or a white sheet. It is unclear how long he had been dead. They started CPR and immediate blood transfusions, it took 5 minutes for my son to hold his own heartbeat without manual assistance. My husband saw the nurses rushing him out of the OR to the NICU and was able to see him briefly. Two nurses were manually breathing for him. One pushing air in and the other pressing his belly to get the air out.

I had pinned so many thing to my Baby Board on Pinterest before all this happened. I knew exactly what I was going to do differently this time to breastfeed accordingly. I had a better breast pump. We had the crib ready. We were excited for boy things and not so much pepto pink. I had different types of bottles and pacifiers and diapers and wipes and diaper genie refills. We were ready…

After my 24 hours of medicine magic button ended, it was time for me to go visit my son. The nurses had removed the nice little area in our room at some point. That was thoughtful of them. My son was born exactly one week before Christmas. So there were Christmas decorations everywhere. A little jingle plays in the hospital each time a baby is born. I wondered if they played the jingle for my son since he was kinda born dead.

You have to put on little gowns and rub your hands with a disinfectant that has a smell that you could never forget. We could only touch him with gloves. When I saw my son for the first time he was beautiful. But I couldn’t breastfeed him like I wanted to because he was being fed through tubes attached to where his umbilical cord would have been. He was swollen and very pale. I knew my life was never going to be the same.

Welcome to NICU.