52 (more) weeks of autism

•September 22, 2013 • 1 Comment

Well I’ve done it!  I have blogged for 52 weeks about our lives.  Now what?!

I suppose I have several options.  I could keep writing and change my blog name to “…and now for the rest of our life with autism.”  That’s not very catchy.  I could pat myself on the back for the accomplishment and fall off the face of the blogsphere (?).  I have enjoyed my time blogging and the deadline to actually make me stop and take a minute to reflect.  So, what I’m going to do is keep blogging AND keep my blog name.

Ali has two diagnosis, mitochondrial disease and autism.  Both, at this moment, have no cure.  In fact, scientists aren’t even quite sure why they occur…..yet.  They affect our life 24 hours a day, 7 days a week, 52 weeks a year.  We don’t get a vacation from autism or mito.  We have some really great days, but they are never “normal”.  I will keep sharing what happens behind our 4 walls to keep educating others about both mito and autism, but especially autism because it affects our lives so profoundly…..today.  I will keep sharing to provide a soft place to fall for those who are going through similar experiences and need to know someone else understands.  I will keep sharing as a form of therapy for myself.  I will keep sharing so I have documented and don’t forget our crazy lives and where we started.  I will keep sharing for Ali.  The more people who really understand her the more access she will have to life outside our 4 walls.

I hope those of you who have followed along will continue to ride this roller coaster with us and enjoy a glimpse into one family’s 52 weeks of autism.

52 weeks of austim

•September 15, 2012 • 3 Comments

If you are reading this blog, welcome!  I am a mom of 2 wonderful children.  As I say, a typical 11-year-old boy and a not so typical 8-year-old girl.  My daughter is diagnosed with mitochondrial disease and autism.  This makes life very interesting.  When crazy things happen in our lives I always say “I need to write that down so I remember!”, but never seem to find the time.  I am much more likely to do it if I am accountable to someone else, hence the blog idea.  I will share stories of joy, sadness, hope, and crazy fun times.  I’m not looking for a million readers, but chose to do this as an outlet for me.  If you find yourself on this page, however, I hope you have a few laughs and take away a better awareness of differently-abled people!

Vacation-again.

•April 10, 2017 • Leave a Comment

I have written about our vacations before, but as Ali grows and changes so do our getaways. They are part of who we are and what we can do as a family. So, if you are going to understand autism, I suppose you need to need to understand an autism family vacation.

We live in Indiana, so requirement number one was a warm climate. We choose Florida because Q and I went to a wonderfully quiet little spot in Cocoa Beach last year that we thought Ali would like. We try to avoid hi-rises because Ali has no fear of heights and doesn’t understand that leaning or sitting on a balcony railing may cause her to fall. This place was all one story and only had 12 units, my mom wanted to go with us, and the owner lives on site, so I figured we could only irritate 9 families, tops. I worry about infringing on someone else’s relaxing vacation with our excitement. The other people there seemed more than happy to chat with Ali when she tried to chat with them. I should worry less.

The best vacation spot for Ali would be a kid friendly spot….that had no kids. This is a hard vacation destination to find, but we really thought this place would be good for Ali. They had a full kitchen area so we could prepare most meals in and a wonderful outdoor seating area so we could eat outside and not worry about making a mess. This spot was right on the beach and also had a pool so I could hear the waves, my favorite thing, and Ali could enjoy water that did not have a life of its own. Water that comes to get your feet is terrifying.

We chose to drive because flying was more expensive than we wanted. We could find cheap fares, but they all required a layover somewhere or changing planes and that is not really enjoyable with Ali. We were able to break up our trip halfway with a stop to visit dear friends in Atlanta so that seemed like a doable drive. On the way home my mom was at the airport the entire day waiting for her 10:30 am flight to depart. They eventually were told to come back the next day. Asking Ali to hang at the airport all day and then come back tomorrow for her flight would be grounds for a full on melt down. No thanks.

Thank heavens for modern technology that allows us to find a Taco Bell near any location. That is our favorite stop because it’s rarely crowded and they almost always have single serve restrooms, meaning no one else is washing or drying their hands or flushing to distract us. Plus, there is not better motivation to actually pee and not hold it than a cheesy roll up. Yes, they are full of gluten, we do an extra dose of Miralax. It’s that or not pee. I choose pee.

We stopped in Atlanta in time to see our friend’s daughter play softball. While there we kept Ali busy with 2 hot dogs, a bag of Cheetos and dancing to an opposing teams warm-up music. We’re pretty used to us, but I always worry that we will be embarrassing to our friends’ kids. We have good friends. I shouldn’t worry.

The beach was wonderful and Ali loved the pool, as expected. It was warm and she wanted to swim every day, multiple times a day. We let her. The beach was not her favorite and when we encouraged her to walk with us she would eventually turn around and walk back by herself to the “hotel”. I was amazed that on day 1 she knew exactly which place was ours. It was pretty non-descript from the beach. Her brain does amazing things.

Ali was obsessed with “Denise” when we got to the hotel. It took us awhile to figure out that “Denise” was actually “Disney”. It’s odd because we weren’t planning on going to Disney this trip so we hadn’t talked about it at all and there really aren’t any bill boards advertising it on the way down. Yet, somehow her amazing brain knew we were close. There WERE 1000 billboards for Ron Jon Surf Shop and she was NOT excited to go there. Go figure.

We decided on the last day to make a trip to Disney Springs, formally known as Downtown Disney. There is no fee to get in and it’s just shopping and restaurants, but it has the Disney vibe and several over the top Disney stores, which Ali really likes. Ali has been having a bit more anxiety on her new meds, but she’d been asking for “Denise” and this seemed like the tamest alternative. When we arrived we walked through 2 stores that Ali thought were pretty great, then we hit the restaurant section with its outdoor entertainment. The bands were loud and Ali screamed bloody murder. I tried all of my calming techniques to no avail. I was not really interested in running through the music section as fast as possible with a screaming child, putting her through the torture and getting tackled by Disney security for possible child abduction, so we turned around.

Not one to give up after an hour long drive, and not one to like to disappoint my super easy going Q, who really wanted to go to the Stance sock shop, we walked around the outside of Disney Springs, you know, the quiet part were there is nothing to see and they keep the garbage. We slowly walked into the opposite end of the shopping area where Ali continued to scream and hold my hands at the mere thought of Disney restaurant entertainment. I told the boys to go ahead and Ali and I managed to chat and breathe and relax enough to check out a few more shops. Once we were in and the threat of loud music was at bay she actually picked out a couple of places she wanted to see. She found some new books in a Disney store at the back of the mall that had no customers and was nice and quiet. And she chose to stay to watch some high school dance teams perform. Once we could take the time beyond the loud music and glaring eyes she can pull herself together and have a good time.

On the way home we made a quick stop near the University of Florida so we could drive through campus to let Q take a look. We made one last stop at a Taco Bell to eat and take a quick bathroom break. As soon as we walked into the bathroom I knew we were doomed. There was speaker in there piping music in so loud that even I was distracted. Ali tried, but just couldn’t do the deed. We washed our hands and ate lunch, Michael and I trying to decide if we wanted to try to stop somewhere on campus or try a gas station before hitting the road. I decided I would ask the manager if he would be willing to turn the music down so we could try here and then just hit the road. He agreed. As we entered the bathroom again Ali carefully eyed the speaker in the ceiling. What if it was just between songs and would start again any second? When she felt comfortable that it was off she was successful. We thanked the manager on our way out. I’m sure he thought we were crazy. I don’t even care, it saved us another gas station bathroom stop.

It was a quiet, uneventful, pool-filled vacation and I thought it was worth the drive and every penny.

So I asked my friends after chronicling our journey, “So who wants to go on a family vacation with us?!” They both agreed they thought it sounded like fun. We have good friends.

Autism Awareness.

•April 2, 2017 • Leave a Comment

It’s Autism Awareness Day. It’s a funny thing to me because it has been a long time since I’ve met someone who was not aware of autism. In fact, it seems like when I mention to someone that Ali has autism I hear about that person’s friend who also has a kiddo with autism. People are aware.

Our biggest struggle is not awareness; it’s understanding and acceptance.

We just returned from vacation, a trip planned around Ali’s strengths and also what would be fun for all of us. We broke the trip up with a stop in Atlanta to stay with friends on our way down and back. When I originally planned the stop my friend asked what she could have for Ali when we got there.  “And don’t tell me nothing!!!!”  I responded with “Kindness and understanding” as a joke.  I don’t like to ask for “special accommodations” for Ali, but the truth is, I would happily do it for someone else.  She wanted to make sure Ali was comfortable and happy.  That’s autism awareness.

When I texted our arrival time we were told they were at the ballpark with their daughter “G”. My friend said we could come right there to watch her play or could go to their house first to get settled and then come over. She mentioned that the ballpark had nice restrooms that were each large individual stalls. She knows that Ali has issues going to the bathroom when the bathroom is noisy and others are flushing, running water to wash hands, and using the air hand dryers. That’s autism understanding.

We chose to go to her house as Ali had a bloody nose in the car on the way there and I knew we already make a scene everywhere we go, best not to do it while blood splattered. I asked if we would be too embarrassing to “G” teasing that we will enter the ballpark like…

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And leave like…

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They still wanted us.

We had a good time at the ballpark, watched “G” play a great game and then went back to their house for dinner in, because that’s autism understanding.

On our way back through after an exciting beach trip, they fed us another great meal. Ali spent most of the time in their quiet bathroom, but at one point walked through the dining room doing a little dance with a mouth full of naan. Their other daughter “H”, being the caring girl she is, said “Careful Ali and chew your food.” Ali, of course, took her fully chewed naan and threw it at “H”. Michael took Ali upstairs for a break and our friend says, “That’s how your sister feels when you tell her what to do. She would probably throw her food at you too.” “G” agreed. Yep. When you have no real social awareness you just kind of do what feels good in the moment. They got a good laugh. That’s autism acceptance.

I hear a lot; well you can’t let her do (fill in the blank with a “weird” behavior) forever. It’s a process. I hope to someday be able to pee in any bathroom without having to worry about the noise level. Throwing food limits where we can take Ali and whom we can eat with. We’re working on it, really hard. In general, however, I think, why not? Why can’t she ask everyone to play Candyland? And why can’t you spare 5 minutes to play with her? Why can’t she wear elastic waist pants forever? They just feel better and she can maneuver them. Why can’t she watch Calliou until she’s bored of him? He’s annoying, I know, but I can ignore him. I promise it is easier to be accepting of another’s differences than it is to push them into the box you want them in. In fact, I will argue that it will be more fun for both of you.

Being with people who can laugh (after Ali has left the room—that’s key) and not judge is huge. In the end what we all want is kindness and understanding.  That’s what autism awareness is all about.

Why I March.

•January 26, 2017 • 1 Comment

I have been asked, personally, a few times what the Women’s March this last weekend was all about, and why I decided to participate. A couple of the requests for information I think were truly heartfelt and a couple were meant to stir the pot. I’ve seen responses on other’s posts with “They don’t know why they were there.” or “It’s just bitches being bitches.” The reason why I marched is much too complicated to put into a few lines and while I feel like this is a freakin’ manifesto, it requires history to understand #WhyIMarch.

The history:

I am a working mom of a special needs child. “My time” begins at 9pm, if I’m lucky and homework is done, my daughter has gone to bed without complaint, and there were no other activities that kept me from cleaning up after dinner and preparing for the new day ahead. At 9 I am tired and usually I just want to curl up on the couch and watch a little TV, typically dozing off by 10.

In past elections, I would listen to the debates while doing other things, pick the candidate I thought best represented my views and would be best for the county overall, and move on. I have voted in every election that I have been eligible to vote. 7 elections. I have voted for Democrats 4 times and Republicans 3 times. I have never cast a straight ticket. I felt the need to vote for whom I thought would best serve our country, state and city. I’m not saying I’m right; it’s just what I do. This year listening to Donald Trump’s words shocked me. His words about immigrants, his words about minorities, his words about women, his words about those who have different abilities. Shocking. Whether he meant them or not, he said them and words have power. So this year, I watched every word of every debate, no matter how painful, I watched every interview-skewed for him or against, I read as many of his tweets directly from his account, (as this his is primary form of communication), as I could (but he tweets a lot). I wanted to try to understand him, but I was seeing something emerge that I didn’t like.

Shortly before Election Day, I was tired, rapidly losing hope and feeling desperate and alone. How could so many people back someone who took pride in bullying others? When I tired to ask questions I would get harsh criticism. I was introduced, by a friend, to a secret Facebook group, of about 4 million people; from all over the world that just wanted a place to say “I am worried.” Or “I want to say I’m voting for Hillary, but simply don’t have the energy to fight and defend my choice to my family and friends.” We could do so quietly and without judgment in this place.

When Trump won I was deeply saddened and disappointed, but not entirely surprised. The people who voted for him have obviously felt underrepresented. They were angry. His words gave them power. I appreciate that. I truly hope he can represent our country well, but I have serious doubts. I am concerned that Trump won’t be able to hear the voices of all of citizens, even the people who voted for him, instead deciding on his own what is best. I am concerned that he won’t have empathy for people that are not like him (most of the United States). He says he has plans; the biggest and best plans, but can’t articulate them. So I am worried what that will look like for my family. I hope he is successful, I really do. You will not see me post #notmyPresident, although I understand why people are doing so, because whether I like it or not, the fact is #heismyPresident, that frightens me and so I march.

Why I march:

I marched because I was embarrassed. I am a fighter for what is right and equitable. Since my daughter was born, especially, this is has been my responsibility. I allowed myself to give up, to be bullied into keeping quiet. I sat in quiet concern with millions of others and hoped that that kindness would win. No more.

Did I think I could change Trump’s mind by marching? Based on my feelings about his personality, no. To the contrary, I think it’s much more likely to make him angry and minimalize our group. But it was important to no longer be quiet. To say, based on what I know today, I find you an unacceptable President and your views do NOT represent my own or what I believe the United States stands for. I will gladly admit if I am wrong, and I hope that I am.

I marched because I believe those with disabilities should be treated with the same dignity and respect as those without. Not mocked. I watched an interesting montage posted by a family member and Trump supporter that showed Donald Trump using similar speech patterns and hand movements while showing his disagreement of other people with no obvious disability. So as to say, “He always does this. Not just to those who are disabled.” That did not make me feel better. As President, you should have policy that is strong enough that you can defend with out personally attacking those with opposing views.

I marched because I believe black lives matter. I need to say this really has very recently hit home for me. When black lives matter came about I will admit I uttered the words “all lives matter” a few times. I then spent some time trying to understand the movement and really began to understand why the words were so important as they were. This summer our 15-year-old son began taking more independence and instead of wanting to hang at our house with friends he wanted to go to the movies or walk around downtown with friends without mom hanging around. I noticed my comfort level changed when he did things with his friends of color. Not because these were bad kids, they weren’t at all. It was because I know how they will be judged. In those moments, I realized I was wrong and this is what mothers of children of color have been trying to get through my head all along and what they feel everyday sending their kids out the door. One of the speakers we saw at the march said “When you go back home, remember how you felt. What made you, that instinct, that gut, that said I gotta get on a bus, a plane a train no matter what to protect my children.” I will be bold and speak out.

I marched because everyone is entitled to his or her own religious beliefs. Every religion has a few wackos who do heinous acts in their name. The second largest religion, behind Christianity, is Islam. There are 1.6 billion people in the world who are Muslims, practicing in a peaceful manner according to the Qur’an. Do radical extremists exist? Of course they do. Do they scare me? Yes. Punishing all Muslims for the actions of a few is inappropriate and not what America is about.

I marched because I don’t believe we should deport millions of illegal immigrants living peacefully in our country. I am extremely lucky to have been born here; many others are not so lucky. If you want an opportunity for a better life, like my grandparents and their parents, you should be allowed to gain citizenship here if you pass background checks. Many people are here illegally because regardless of their actions, we won’t allow them to become citizens. Contrary to popular belief many pay taxes willingly. They pay property tax, sales tax and according to the IRS they paid $9 billion in payroll taxes annually by obtaining ITIN’s (Individual Tax Identifications Numbers). I won’t deny someone an opportunity that was simply fated to me.

I marched because I believe women have a right to make their own reproductive decisions. I know many women do not agree with me on this topic, and that’s ok. The wonderful thing about democracy is that we can disagree peacefully. Abortion is the sticking point here. According to the CDC abortion rates are the lowest they’ve been since 1973. In over 40 years, the lowest. They have continually decreased at a steady rate since 1991, the year I graduated high school. This has widely been attributed to better women’s health care and education. Almost every woman I know has visited Planned Parenthood at some point in their life, and not one of them for an abortion. They’ve been for birth control, annual exams, health screenings, and pre-natal care.

I marched because I believe in affordable health care for everyone. I agree that the ACA needs work. I see it as a rough draft that needs refining. Our family has affordable health care through my spouse’s employer and they have accepted pre-existing medical conditions for as long as we have been with them. Our daughter has autism as a primary diagnosis, a pre-existing condition. As is cancer, Down syndrome, cerebral palsy and asthma. Yes, asthma. If my husband ever chooses to change employment we will need to very aware of their insurance policies and hope not be able to afford insurance in the open marketplace. Our family was elated that our children could stay on our insurance until age 26, that may go away. Not to mention the possible repeal of annual and life time maximums. When you have a special needs child these issues are major. I fear people have not considered how a repeal of ACA will truly affect them. I hear Trump’s plan is awesome. I just haven’t seen it made available for review, so I’m worried. I think repealing without replacing is dangerous for a lot of American families.

I march because I am an educated woman, sitting in my warm home with 2 children and a dog, making a decent living, working because I want to not because I have to, with a husband who is loving and kind. I march most of all because of this. I have this life and the opportunities it affords because of others who have marched before me with much more to lose than I. I refuse to forget their sacrifices or take them for granted. I march because I can for those who feel the most oppressed because it is the just and right thing to do.

I have been given the blessing of raising two pretty great children. One to guide and support on his own path and to help find his voice. One whose voice I must be. I take both jobs very seriously.   I am a caregiver at heart. I have always been. No offense to my friends…but my mom recently commented, “You always were friends with the weird kids.” Probably because I was one, but also because I saw value in everyone and we all deserve a voice and to not be called “nasty” “totally incompetent” “weak and ineffective” “sad” “pathetic” “stupid” “wrong” “disgraceful” “dummy” “worthless” “losers” or a “dummy dope”, all the names our new President has called people, even in is own party, when they disagree with him. He is representing me to the rest of the world and so I march. I want a kinder more accepting world for my children.

Pro-Kindness

•November 13, 2016 • Leave a Comment

One of the most difficult things about raising a child who is primarily non-verbal is trying to be her voice when something is wrong.

Ali has been on several different medications and they help with some things and make other things worse. It’s a give and take about which is the lesser of two evils. Which medicine will allow her to live the best life she can and still keep her as “Ali” as she can be? The last medicine that we were on helped her focus at therapy and so she was able to make strides there, but leaving the house was difficult because her anxiety was through the roof. Our summer vacation that was supposed to be a time for our family to get away, reconnect and relax, became a “Which one of us is going to stay with an aggressive Ali while the others go have fun.” Trying to manage her anxiety, which manifests as fear and then aggression is no picnic.

I have become an expert at knowing which situations are stressful for Ali. A title I wish was not necessary for our family, but one I will continue to carry with pride for as long as is necessary. For most of the summer Ali was content to be a bystander, riding in her stroller, while we experienced life. Her stroller is comfy and she feels safe there. For Ali the perceived threat is all around her. There are loud noises that she can’t control, people that might touch her, sensations that might be too much to process. I know that the sound of a siren going by is not dangerous for me, it’s loud and may be uncomfortable to hear for a few seconds, but I know there is no threat. Ali’s reality is different than mine. That sound does something to her body that makes her want to crawl out of her skin. That’s her reality and it also must be mine. That doesn’t mean I need to agree that the siren sound is horrifying, it means that I choose to be empathetic and understand that it is painful to her.

It is hard to hear people who know our family well say, “Well, she needs to get over it!” To me that is the same as walking up to someone with a broken leg who is struggling on crutches and saying “You need to get over it and get a move on!” They can’t. They need time to heal. That may not happen quickly, but is instead a process. The same is true for Ali.  At home we have a table that seats 6. Michael, Quinten and I sit at one end of the table scrunched together and Ali sits at the other end with 2 empty chairs on either side of her. She likes her space. Sitting too close makes her extremely uncomfortable and anxious. I love snuggling, so I while I don’t fully agree with her feelings, I can empathize and understand that her feelings create her reality. I want to enjoy our meals together as a family, so we all sit at the other end of table.

Political alert! I voted for Hillary Clinton. I’m not ashamed to say that I did. Half of our country did as well. Donald Trump’s policies and ideals worry me. I consider myself pretty liberal, but I don’t’ always vote Democrat. I am a nerd and love numbers and budgeting. I have voted for Republicans in the past because I tend to be more fiscally conservative. Michael and I almost never vote for the same candidate so I am used to being a good sport whether my candidate wins or loses. But this year, when Hillary lost, I cried. The girl who usually is like “Well, I guess I’ll try again in 4 years!” wept. Not because my candidate lost, but because by electing Trump I felt as if we were telling an large sub set of people that they simply don’t matter, including my sweet girl, who I will fight for until my last breath.

I am mourning my reality. You don’t have to agree, but I do hope you can have empathy. I am worried that Trump will repeal the affordable care act. We rely on insurance (that we also pay an exorbitant amount for) without which we could not afford the therapy Ali currently receives nor could we have afforded the genetic testing that we did for Ali this summer. We did the testing to determine what genetic syndrome she has to try to help improve her life. The genetic testing also checks for risks like breast cancer, heart disease, Marfan’s disease, and many other syndromes. Because Ali can’t always communicate how she feels, we felt the information would be helpful to have for the future. So when she tells me her heart hurts I can have an idea of how quickly I need to seek medical attention, if at all, maybe she’s just sad. Because I knew insurance could not drop us based on what was discovered, we opted to know all of the results. That decision worries me now.

I worry that Pence will encourage the same types of reproductive laws for the country that he attempted to pass in Indiana. Puberty is going to be a tricky beast in our house. I would like to be able to work with Ali’s doctors and make the best decisions for her without government telling us what is and is not acceptable. It’s scary enough when you understand what is happening with your body. I want her retain as much dignity and have as little anxiety as possible.

I worry how I tell my son, who is 15 and figuring out who he is and who he wants to be, that the person who is representing our country to the world can say repulsive things, but that it’s truly not ok to do so. He questions everything, as he should at his age, and I wish I could tell him why so many people find Trump’s communication style appropriate. He knows that not all the sports figures or musicians whose talent he appreciates are the best role models for life, but this is the person that we have chosen to be our representative. To speak for us. I am upset because I have yet to hear one thing that I agree with, yet he will be my voice. And even though I may not have agreed with every President’s policies that we’ve had in the past I could find some common ground.

I still respect the office of the President. I also respect the process. If you voted for Trump, I’m not angry. It was your right. If you voted for Johnson, I’m not angry. It was your right. I think if we want to change the Electoral College process that we can work towards that goal, but to do it because your candidate loses is disingenuous. Trump won fair and square under the system we have in place and the fact of matter is about half of the folks who exercised their right to vote feel he represents them better than Hillary.

So where DO we go from here? A nation divided. I’m going to do like I do with Ali everyday, because it’s what I know how to do. I’m going to show empathy. To those who feel like they’ve lost something big and feel a perceived threat that is their reality. My LGTBQ friends, my Muslim friends, my feminist friends, my medically fragile friends, my friends of color and my immigrant friends. While Trump seems to be changing his tune a little over the past few days, I know you are still scared. He has also managed to rally the ugly in our society, that was already there, but they now feel they have a voice. To those who feel American politicians have let them down in the past and that Trump was their best hope. Especially to them, I’m going to listen with an open mind to their perceived threat that is their reality.   They clearly feel angry too. If I can’t understand it, I’m going to do my best to be kind and listen. We need time to heal, on both sides. It’s a process and it’s going to take time. We’re angry. It’s ok and neither side is easily going to “Just get over it.” We need to come to the table together, even if we have to give each other a little extra space. Just like we do for Ali. We’ve got to find a way to come together.

I will not resort to hate talk and I will not tolerate it towards either side. If we keep casting stones (i.e. posting divisive memes on Facebook, holding angry protests, forcing our views on others) we will never heal. We don’t have to agree because it’s likely we never will, but I bet we can find some common ground with which to start understanding. So wear your Trump hat, but be kind. Understand your neighbor is mourning their loss. March in your peaceful protest, but understand that we are stronger together so fight for what you want, don’t bash what scares you. I am going to wear my safety pin and stand up for anyone (and I mean anyone) who is being bullied. I have spent the last 12 years fighting “bullies who know best” (Anthem you know who you are.) and persistence; kindness and reason win every time. Every. Time.

Difficult decisions.

•April 10, 2016 • 3 Comments

I have said it before, and it bears repeating, I know enough to know that I don’t know everything. With life comes experience, with experience comes knowledge, with knowledge comes the realization that there’s a lot I do not know.  I know I can make difficult decisions for myself and guide my children with their difficult decisions, but I cannot make someone else’s difficult decisions for them.

If you haven’t seen the news, the governor in the state of Indiana has passed several laws during his time in office that have been controversial, to say the least. The most recent is an anti-abortion law that makes abortion illegal in almost all situations and places unreasonable expectations on women who abort (even naturally).

Our first pregnancy ended in a miscarriage. I don’t talk about it much because I was totally unprepared for such an outcome and was devastated by the loss. It happened at 13 weeks. I had just informed our friends and my employer the week before, our family knew much before that. We were so excited. When I began spotting at work I immediately called my doctor. Michael met me quickly at her office and an ultra sound was done. No heartbeat could be found. I remember the ultrasound tech was just very quiet and said she needed to get the nurse. The nurse came in, hugged me, and said, “I’m so sorry.” I only remember lots of tears after that.

Our doctor was on vacation so one of her colleagues came in and explained what would happen with my body in the coming days. I was given two options: One was to go home and allow my body to dispel our baby “naturally” over the next several days. The other was to have a D&C, and abort our baby medically the next morning. We went home to discuss our options. After spending the rest of the morning and part of the afternoon in severe pain, both mentally and physically, I determined it was best for ME to take the medical route so I could begin the healing process. I would never, ever tell another woman what she should do in that situation. For some, a slower process at home might be the best decision. I would simply hold her hand and cry with her.

Under Mike Pence’s law I could still make my decision, but would have had to arrange for cremation or burial of our baby in my stunned state. That would not have been unreasonable for our family, but I can only speak for our family. If I had chosen to stay at home and let nature take its course I would now need to keep what my body dispelled and arrange for cremation or burial. Based on that morning at home before I made my decision, that seems absurd and entirely impossible.

It took several years for me to be ready to attempt to have another child. I now understood what many women before had, that it wasn’t an easy process full of joy and wonder. It could also mean extreme disappointment and pain. When Michael and I became pregnant a second and third time, we chose not have any genetic testing done to determine if we might have a child with disabilities. We just wanted what God would bless us with. I am a caregiver by nature. We were financially stable. We had the luxury of being well educated. We had a family who supported us. We would accept what we made together and figure out the rest. That was OUR choice to make. I would never, ever tell another set of parents what decision they should make. Because I can’t live with them and manage their daily lives, emotions, finances, and family dynamic. I can only provide emotional support, walk through resources with them and hold their hands and cry.

The truth is if you had told me 11 and a half years ago that I would be having a child with autism, developmental and intellectual disabilities and that she would change every singe aspect of our lives, I could not have possibly understood the magnitude or the depth of how it would affect us.   Having lived it, and knowing what I know today, I would make the same decision again and again and again. That is what is best for US. I would never, ever tell another family what their decision should be because our life turned out great. It’s been a lot of hard work, required an insane amount of resources and time and energy and sacrifice. If I’m not willing to show up at their house every morning to put in the work, find the resources, time, energy and sacrifice, then it is not my decision to make.

What is clear to me is that the people making these decisions for us have never been in the situations themselves. If they had been they would certainly realize nothing is ever black and white. Nothing. I consider myself pro-life and pro-choice. I think you can be both. I don’t condone abortion as a method of birth control when there are so many other, I feel, more effective options available, but I also can come up with hundreds of reasons a woman might find that it is the best decision she can make for herself, her family and her baby.

Our governor lives just a few blocks over from us, and I say this, not at all sarcastically—like my normal self, I wish he could come a spend a day in our home. Learn about a family who has been devastated by miscarriage, utilized medical services and had options. Learn about a family that lives life with a special needs kiddo, that has their own financial resources, but still needs assistance to get the only proven “treatment” for autism, that has a wonderful support network and still feels alone at times, that has the knowledge to fight insurance and for resources and still loses battles. It’s not black and white, Mr. Pence, and it certainly is not your place to make the difficult decisions for our family that will affect our lives in such profound ways. They are difficult decisions because there is no right and easy answer. We need the ability to judge for ourselves.

A nation that is afraid to let its people judge the truth and falsehood in an open market is a nation that is afraid of its people.— John F. Kennedy

Censorship.

•February 7, 2016 • Leave a Comment

family fun

I was working from Starbucks this week while waiting to pick Ali up for a doctor’s appointment. It was very crowded and two other moms sat down beside me and began chatting. I was engrossed in what I was doing and didn’t hear much of what they were saying until I heard the name of Ali’s therapy center. Then I began my best to work while also eavesdropping just a little bit.

Their children were younger than Ali so their kiddos go to the sister center that takes children Pre-K though about 3rd grade. They were discussing how much progress their kiddos had made in the short time they had been there. One lamented over missed years of therapy by not starting earlier. The other mom discussed how her family’s doctor recommended this particular center so her child could lead a normal life.

I considered introducing myself as “one of them”, but then I realized……I wasn’t.

We are at a different place in our journey. We’ve traveled further down the road. We’ve trudged up hills and have seen what’s at the top and we’ve toppled down them. They were just setting down the path. I suppose I could have imparted my “wisdom”. Ali is now 11.   I have lamented not starting ABA earlier for her. I have strived for normal. I no longer do either of those things, but what I have learned on our path was necessary for us to get where we are today. I bit my tongue, just this once.

I’m not very good at biting my tongue, so I’ll tell YOU what I didn’t say that day.

We no longer strive for “normal”. We strive for “the best Ali can be”. We strive for “great days”. We strive for “happy”. How would I describe that to these moms? Would they think I’d given up? I haven’t. It’s just “normal” is so very far away from where we currently are that it’s really not on my radar screen.   We also used to strive for “normal”. When we stopped focusing on “normal” we were able to focus on Ali and that, my friends, is huge.

I no longer lament lost time. We learned so much from the path Ali has taken. Her path has put people in her life that have molded and shaped who she is today, who I am today. Would Ali have benefited more from starting ABA earlier? We’ll never know. I can’t go back now. Have our lives been forever changed, in the best way, by the people, teachers, therapists, friends, and doctors we have met along the way. Absolutely! I wouldn’t give that up for “maybe”.

I suppose I could have shared my musings to those moms that morning, but I couldn’t figure out how to say “Cut yourself a break lady!” and “If your kiddo is never “normal”….that’s ok.” without sounding crappy. They are smart and know their kiddos. They’ll figure it out, in their own time, on their own path.

I packed up my things and left, smiling at each of them. At the very least I could offer a little kindness. I know how hard the process can be, but there’s something very valuable to getting there in your own time.

Today on my Facebook, Ali’s last day of school before ABA therapy, popped up as a memory. It’s been 2 years. How much we learned there, how far we’ve come, how much progress we will continue to make.

You have brains in your head. You have feet in your shoes. You can steer yourself in any direction you choose. You’re on your own, and you know what you know. And you are the guy who’ll decide where to go. –Dr. Seuss

Balance.

•December 30, 2015 • 6 Comments

As the New Year approaches I am doing what millions of other people do at this time of year, reassessing this last year. I’m thinking about what worked and made me happy and what didn’t work that I need to change. This year has given me many blessings and brought a lot of changes that have been equal parts exciting, wonderful, hectic and overwhelming. Amid all of the wonderful, I have really struggled to find my balance this year.

I think all moms struggle at some time or another with balance. I had figured out a nice balance as a work-at-home mom, but as a work-outside-the home mom, I am still figuring it out.

Everyone finds balance at a different spot. I have received lots of advice, all of it taken and appreciated, but I have to find my own balance. The truth is my ideas of success are mine and they may be different than someone else’s. My perspective is mine and can only be truly understood after living in our home.

Life with Q is easier to balance. He is capable of doing a lot on his own, and while he does still need guidance, of course, he can understand consequences. Because I’m no longer home to clean we have cleaning night once a week. The whole family has to pitch in. Ali plays us motivating cleaning music on her iPad and doesn’t make a worse mess. That is her contribution. Q has always had his set list of chores to do, but I think cleaning with the family has made him more aware of things like: leaving a giant blob of toothpaste in the sink is much harder to scrape off 3 days later then just washing it down the sink when it first drops. I think, in many ways, the additional freedom he’s been afforded has been good for him.

I do think about myself at Q’s age, however. I was just entering the time in my life when I really did need a parent around. I was able to make a lot of decisions on my own, but the decisions also became increasingly more difficult. Decisions that could have lasting consequences. My mom had to work long hours at that time in my life. It made me extremely self sufficient and that has paid off very well in many areas of my life. I also received a lot of guidance from a friend’s family whose mom was able to be more available when we weren’t in school. Where is the right balance for Q? I’m not quite sure.

The larger struggle has been with Ali. She still needs quite a bit of guidance and I haven’t been able to work with her at home the way I would like to.

We spent Christmas with my mom and I ran her to Costco to stock up on bottled water and rock salt for the winter.   It is getting more difficult for her to lug heavy things in the house. I took Ali with us to get her out of the house, but put her in her stroller at the store. I knew I was going to need to manage a heavy cart, that we would need to go to the very back corner of the store, and that she would fixate on the foot long hotdog that awaits her at the end of every successful Costco trip. If Ali had a breakdown by the water I’d have to get her through the entire store to the exit. No thanks. The truth is I haven’t taken her out much without the stroller the last several months. Time has been at an absolute premium. If I make it to the store it’s because I am out of something critical. I can’t just leave without it because my child has a breakdown, but I also can’t manage her breakdown in the store. Therefore, if Ali is with me, she is contained. She actually likes to be safely in her chair, but I would like to get her comfortable walking through the store without being totally overwhelmed. I just have no time for teaching right now. I have lost my balance.

My aunt asked me, after reading our Christmas letter about peace, if I had recently read a book on finding your inner peace. I haven’t read anything non-work related in months. Not only nothing fun and relaxing, but nothing about any new treatments for autism, besides short articles on Facebook that I have not properly vetted, except through Michael (He’s much more aware of valid medical outlets than I am).

I have left pee pee sheets on the bed all day because I’m too rushed in the morning to check them and I no longer come home after dropping Ali off at her therapy center. I then have to change sheets and do pee stench removal before nighttime.

I have fed Ali tacos three nights in a row because I didn’t have time to cook something different. She loves that, I don’t.

I have gone weeks knowing she has a new treatment plan a her therapy center, but not knowing what it is because I have not had the hour of time required to sit with her therapists and go over it so we can be consistent at home.

I have not been consistent with Ali’s treatment plan at home.

I have been drinking a Coke a day, instead of water, because I NEED it.

I have not actually mindfully exercised since August.

I have lost my balance.

I can find it again; it will just take a little practice and patience (with myself). I also have to know my limitations and focus on what truly is important. The ultimate struggle is finding the balance to do what is best for you and what you enjoy while also doing what is best for the ones you love. Sometimes that is one and the same and sometimes those things are contradictory. In my unbalanced state I have at times lost my perspective for knowing what can wait and what must actually be done right this minute. I should say, I know what’s important, but I don’t’ listen to myself. I’ll be more mindful of my feelings this new year.

I guess as I look back on the last year, I realize that I need to trust that I do have my priorities set correctly for me. I think is where I will find my balance.