Tag Archives: autism

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.


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.

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)

The Intro Rant

I used to be a happy, positive person. Swear. There was a moment in my life where my dreams had come true. I had my dream husband in my dream town with my dream job. We even had a beautiful little girl that looked like she came straight out of a Baby Gap advertisement. This life lasted temporarily. I think it was God’s way of giving me what I wanted long enough to get me through what was to come.

My dream job didn’t turn out to be such a dream after all and after a terrible business deal, my small business was stolen from me by people I thought were my friends. My husband’s dream job just ended and never started again. He wasn’t fired, still he never really recovered from it. Our marriage was great but we were beginning to notice that our Baby Gap child was a little more difficult than the other kids her age. She was smart though, so we just accepted that she was going to be difficult. We moved from our dream town to go closer to family to help with our difficult child.

While licking the wounds of our lost dreams, the bottom truly fell out. I got pregnant, and though I really wanted another child, I had no joy at all because deep down I knew something was very very very wrong. I will detail my horror story of a pregnancy and birth in a later rant. After he was born, we were told that there would be problems, but they were unable to give us specifics at the time. We decided to move to a larger city and my husband got a great job in Chicago (1,000 miles away from everything we’ve ever known). We moved our little family to a suburb North of the city and settled in. I was able to stay home with the kids thankfully. After 6 months of getting doctors and specialists set up for each child, during the last week of February 2016 we received official diagnoses for both of them (our designated week from hell). Our beautiful, brilliant, outgoing daughter has High Functioning Autism, Anxiety, and OCD tendencies. Our loving, flirty, happy, hansom little son has Dystonic Diplegic Cerebral Palsy.

When my husband and I met, we were artists. I was a dancer and he was a musician. We were free spirits who loved moving around and experiencing new places. We were self-described gypsies who just wanted to live life to the fullest. Now, he works a job in Corporate America in a cubicle located in a Chicago skyscraper while I am a stay-at-home mom (a term that previously made me cringe) to TWO (not one)…. TWO special needs children.

I am by no means an expert in special needs parenting. This is not an advice column. My kids are both very mild. However, I need to rant as most special needs parents do. Special Needs Parents are tired. We are overworked and undersupported. We sacrifice and live a life none of us chose, but wouldn’t trade for anything. (Well, maybe temporarily for a solo vacation to Fuji for two weeks). Nobody likes to talk about special needs parents. We get the sad looks and the “Oh, I’m so sorry” statements that are all from very well-meaning places. We also get to deal with the assholes who think that we caused our kid’s autism by sleeping with one arm up during pregnancy or even better… we are completely making our kid’s autism up. Like we really want that or something. There are also ignorant people who think that we take our kids to therapy too much because they look so good that they are fine now. It’s people and situations like this that I plan to rant about and welcome stories from other parents too. I will probably piss somebody off. That’s okay. My hopes is that I can maybe make another special needs parent laugh just once. Laughter is less frequent for us. I hope my sarcasm helps.