10 Years From Now: Where are we gonna be then? Maybe somewhere different.

Ten years from this day.  I wonder what that day will look like.  That day, that week, month, or year.  My daughter will be 17.  I will be 44.  2027. How will autism have changed my life?  Our lives?

I think I will be the same person.  Still listening to 90s music. Still wearing my checkered Vans. Still alone.  Still feeling more safe that way. Still in that waiting game.  Waiting until my daughter is home with me again every time she has to go to her dads. Still having our Friday night dinners together at Salvadores.  Where my parents had their first date.  Still walking to Silverlake Park.  We will ALWAYS do our movie nights.  With candy and popcorn, snuggled up in my ratty couch with my old comforter. Still having Sunday dinners with my family.

But what might be different?

Maybe when I ask her about her day or her week at our Friday dinners, she will tell me and I won’t wonder if she is just mimicking what she has learned is a socially acceptable response.  Maybe she will tell me a story about her friend from school and I won’t wonder if she’s actually talking about something that happened to two other people…..but she is casting herself and another person because it is the only way she can relate to the event.  Maybe she won’t question the gender or race of every person she encounters while we shop together.  Maybe she won’t ask strangers what their name is 3-4 times before she introduces herself.  Maybe she won’t use lines from Disney movies to convey to me that she doesn’t want pizza for dinner.

Maybe everything will be so different. Maybe she will have graduated high school.  Maybe she will be thinking about college.  Maybe I will meet some amazing warrior type person who isn’t afraid to have a messy life sometimes.  Maybe she will meet that person too and then find someone like him.  Maybe one day I will dance with her father at her wedding.  Maybe one day, I will be a grandma.

Or maybe not.

We might still have therapy every Thursday.  Or more frequently.  I might still have to explain everything to strangers when she reaches out for their hand randomly.  I might still have to remind her about personal space.  I might have to preside over her affairs.  With input from her father.  I might have to elect someone to take over when I am gone.  That is the scariest part.  Thinking about when I am gone and so is her dad. When we can’t protect her any more.  

I can’t see the future though.  I do not know what autism will bring us each year, each week, or each day.  You cannot prepare for the unknown.  

You have to accept everything that comes your way.  There is no other choice.  When you are pleasantly surprised you celebrate.  When you are let down, grieving, angry…..you just have to keep going.  Keep striving for a celebration or a victory.  They are there.  In the little every day things.  When they finally lick a carrot or introduce themselves to a stranger or tell you what they ate for lunch at their dads and you find out later it’s accurate. Don’t discount these small every day things.  Because the small things are big things for them. It’s the little things that are so important.

I don’t know where we are going to be ten years from now.  It doesn’t matter.  We will be okay.  I’m prepared.  I will always follow her lead.  Because my daughter has taken me on such a beautiful journey.  I’m thankful for it.  Each surprise.  Every story.  Every wound. Every victory.  

I’m in.  I’m along for this ride.

I Will Buy You A New Life

First, let me explain the title. Isla loves a variety of music and she always has a set of several songs that are her favorite.  It’s really more than “favorite”.  She grows attached.  She requests several times each day to hear songs that speak to her on this mystery level I might never know. One of her most favorite songs is “I Will Buy You A New Life” by Everclear.  She clearly has impeccable taste.

I chose that song title to represent the #1 on my list of 5 Things I Think About On Autism Acceptance Day in the year 2017. My number one thought was “Where will we be one year from now?”  I think about this every new year, but this year is different. I hope we will have a new life. 

 I hope we are living in Ohio.  Not somewhere amazing.  A place that fits us.  Small, safe, with everything close by.  In a state that offers her a scholarship and expanded medical coverage.  Her dad recently gave his permission for me to cross state lines, based on the health and educational benefit to her. So this is an exciting time.

In one year I hope that she is finishing up her first year at a private school for children with ASD and other related developmental delays. A lovely, small school that I have been following for three years on social media. A school with small classroom sizes. A school that integrates speech, behavioral, and occupational therapy into their curriculum. A school that teaches taekwondo in their after school program.  A school that offers art and music therapy, which happen to be two things she is the most interested in. Two things that she is the most talented in.  A school that employs staff who will understand her challenges and have experience with her particular disability. I will worry less that one day I will get a phone call from her school because my daughter is being restrained or arrested by ill equipped, underprepared, unfit police officers because she had a meltdown.  I won’t worry so much that she might be falling through the cracks.

Still I am scared. Admitting my ideas to her dad was hard. I was afraid of his reaction because I thought his reaction would be the worst. It turned out to be the easiest. I am afraid of telling her teacher. Her wonderful teacher who has been teaching her since she was four years old. The teacher who has helped carry her through these years. Those first years, which were unfamiliar, foreign, and unpredictable for me. She has been an unfailing guide. A wonderful guide for my daughter. I don’t want Isla to ever forget her.  But it hasn’t been just her teacher. It was her first preschool teacher too. The whole school. They represent a time in my life where I needed people the most. When I had to leave my screaming and crying three-year-old child at a school she did not know and with people she did not know. When autism was officially new to us. When our daughter couldn’t speak.  When they used to tell me she sat alone in a corner a lot.  When I was first a single mom, alone with a child who had special needs and my utilities were being turned off. How can it not be my safe place?

I don’t want her to forget her best friend Maggie, who has Down Syndrome. She was her first friend ever. The little girl who is in photos with my daughter during her first year of preschool at three years of age.  The little girl who laughs at all of her jokes. The little girl who hugged her goodbye at her first recital ever.

So hard to get used to leaving things behind. The general area where I grew up and where she grew up. Or where I know where everything is. My best friends live around the corner.  My brothers best friends live across the street. My mother works just up the highway. The pizza place where my parents had their first date and where I take my daughter once a month is less than a quarter-mile away.  Just up the highway by the Honda shop is an apartment building where my aunt used to live. And I remember my older brother and I stole my moms car while we visited once. We drove it down the street. Once when we were really really poor, I remember my brother stole a bag of chocolate from the gas station just up the street from me where I get my coffee every day now. When I was just 12 or 13 I think.  We drove a really bad car and we had to quickly kick start it to get away! I remember festivals in the parking lot where the post office is now.  I pass the first apartment I ever lived in with her dad every day on my way to work.  

I am scared but I am doing this no matter what.  I am not going that far away. I will be okay. It isn’t having to move that scares me, really. It’s just the unknown of all of it. It’s wondering what her reaction is going to be. It’s watching her go through it.  Because I know it will be hard and I hope in the future she either doesn’t remember or forgives me and realizes that I did it because it was the best thing for her.

Tonight I bought her a new book bag. Because she needs it for a new school. As soon as I know where I’m moving, I am going to talk to her about her new life.

I hope she loves it at least as much as the book bag.

A Must Read

http://time.com/4740129/autism-special-education/

Earth Day 2017!

Rough Draft

My Letter to Sen. Rand Paul and Sen. Mitch McConnell on Betsy DeVos

To whom it may concern,
My name is Brandi Dalhover. I am a single mother to a six year old little girl who has autism. Her name is Isla Jude. I work at St. Elizabeth Healthcare watching cardiac monitors. When I separated from Isla’s father three years ago, I had to withdraw from nursing school to work full time bc Isla’s need for routine and structure is so great and I was losing my home and transportation. I am still working full time. Her father pays child support and carries insurance on her.

The insurance my daughter is covered by through her father only pays for a third of the speech therapy she needs every year and even less of the occupational therapy she needs. Isla has been turned away for group and behavioral therapy by private insurance and even Medicaid. I constantly struggle to get her therapy paid for bc it is so expensive it’s simply unattainable. I’m trying to get her disability, waivers, but it all takes time. Her doctors, therapists, and social workers have all tried repeatedly to make it so she consistently gets what she needs.
So due to the factors I mentioned above, there are times when the therapy Isla gets at her public elementary school is the ONLY therapy she gets. She needs therapy in her classroom environment and she also needs private therapy. She sees a developmental pediatrician every year who has deemed this necessary for Isla to live a full life, one where she has been given the skills to reach her individual potential.  
I believe my daughter has a right to these things. We did not ask for autism, but we accept it and embrace her needs. Please consider Betsy DeVos’ lack of understanding of how important this is for some children as serious and concerning as I do. I feel her ideology threatens my daughter’s well being.

Respectfully,
Brandi Dalhover, Erlanger KY
If you want to sign this petition follow this link:

https://actionnetwork.org/letters/tell-your-senator-to-vote-no-for-betsy-devos

2016 Review

I cannot say the year 2016 was a super productive year for me. But not all was lost.

I started the year out completely smitten with a man who I should have never even gotten involved with. Just based on what I knew about him initially. But mostly because of what I found out later: hung up on an ex girlfriend and also not even willing to publicly admit he was even in a relationship with anyone. I’m not sure what I was thinking there.  I finally got over that in the spring but then I let it happen to me again in the fall. It wasn’t exactly the same situation. I just made the mistake of letting myself start to feel when I wasn’t given any real reason to.  It sucked. But at least that ended well. I let the feelings go. It’s better that way.

What is important is that I learned how to tell when someone will invest in me.  I have learned that if a man does not:

1. Ask you out directly. On a date, like dinner or something.

2. Text or call you just to say hi or ask about your life.  Or like, ever.

3. Acknowledge you on social media. Or want anyone to know you were together in any way.

4. Have conversations with you that don’t involve sex.

5. Text you when they are sober. Or before 8 PM.

6. Want you at their apartment.

Then they don’t care about you.

You are someone who they think of as “available”. Someone they can go to when there is no one else.  You provide for them. And they are done with you after that.

It really only takes once or twice of someone doing this to you and the sting is enough. I have felt enough anger and disgust at people doing this to me in 2016 that I am 100% sure that it will not happen to me in 2017.

 I am in my 30s. I know what I want. I am happy living alone. Now that I have learned to do that, I am comfortable with the possibility of a boyfriend. Not someone to marry. Not someone who needs to be involved with my daughter. Just someone to be with. Someone who can stay home on the couch and order Chinese and watch Netflix with me. For days. But someone who can also go out with me and drink and have fun and come home with me. And I don’t have to worry the next day that they are never going to talk to me again.  Or if I am going to find out that there is some other girl in the picture and I’m the one they are just going to hang out with until that gets resolved.

Someone who is comfortable with just being with me rest of their life and not putting a ring on my finger, signing a paper, and having a big party that I don’t want to be a part of. Someone who thinks my word that I’m not going anywhere matters more than that strange rite of passage. Someone who respects my privacy and doesn’t need to go through my phone or question me about my friends at work or my Facebook. Because I will always give someone that respect.  I want a person who will let me have my alone time too. And let me have a life that doesn’t necessarily always involve them. Because I know who I am and I don’t need to lose myself in another person. Ever again.

Someone who is not afraid of autism. Who will not be afraid of meeting my daughter. Who will realize that life is not always some freaking Hallmark commercial.  Who is not religious and thinks discriminating against gay people is the same as racism.  Who respects reproductive freedom but realizes that I’m not above discussing that with my partner in a way it protects them too.  I want someone who realizes that my past might be pretty fucked up but all that did was prepare me to handle shit. And I can handle my own goddamn life.  And everyone should want to be with someone who can handle shit.  Because when it goes down, you want that person.

I don’t care if I have to be alone until I am at 89 before I meet this person who fits these criteria.  This is the person I want but do not need.

Eight years ago, I had an abortion.

Eight years ago today, I had an abortion.

I was married at the time. We had been trying to get pregnant for a little over a year. We had just began fertility treatment. We got pregnant right away, which shocked us.  It was a very wanted pregnancy. 

I knew early on something wasn’t right.  I felt sick. Still, I was devastated when I got a phone call from our specialist’s office telling me that my bloodwork revealed very low levels of hCG, even after a few weeks. The level of hCG in your blood is supposed to double every so many hours during pregnancy. My level had only doubled once in two weeks. After repeated bloodwork, ultrasound, and appointments that only confirmed that the pregnancy was not going to produce a baby our specialist scheduled me for termination on November 13, 2008. 

After our specialist gave me my appointment time and date I slid off of the examination table and he hugged me very tight and told me he was “so sorry”. I didn’t react.  I don’t think I even hugged back. I just quietly thanked him and left.  I sat in my car alone for awhile outside of the clinic, wondering how to tell my husband.  He hadn’t been able to come to the appointment.  Then I called my mother to break the news to my family.

The night of the termination, we drove home quietly. After we were home, his aunt and uncle surprised us with a visit and a stuffed dog for the baby I’d just lost not even two hours ago. Neither of us said a word. I think I remember just saying I didn’t feel well and going to lie down. Truthfully I didn’t feel well. I was sick for two days after the procedure. 

It was harder when I was still married. Because I always had to keep my grief a secret. After the termination, he and I never spoke about it again. I tried once when our daughter was about a year old. We were sitting on the porch swing outside of our house one spring after I had put her to bed.  The air was so nice and soft and cool.  We had a lot of beers to drink and were relaxed and laughing. Listening to our daughter’s sleep sounds on our baby monitor.  I thought maybe it was the right time to bring it up.  I never thought it was normal that we did not grieve together. So that night, I asked him. If he ever thought about the other baby. He said that he didn’t want to talk about it.  I never brought it up again.

I always think of it on this night every year. Some years are worse than others.  Tonight, I got out the baby book I started. Of course, it isn’t really filled out.  I have done this other years too. But not in a really long time. I read over what I had to say.  How I felt when I took the test, the nausea, the food aversions. Things I forgot about until I read them again. There is a spot for my “last thoughts” about the first trimester. I wrote,

Unfortunately you had to leave us. We are very sad to say goodbye to you because we waited so long for you, but got so little time to spend with you. We never got to name you, hold you, or even see you but we still feel a hole where you were in our lives. We actually miss you so much.

We will never forget you. I am so grateful for you because you made me so happy. You gave hope that we will have another chance to love a baby as much as we would have loved you. I am really sorry you didn’t get that chance.  We love you.

Love, 

Mommy & Daddy

I can’t remember when I wrote that. But I know it was at the end of what would have been my first trimester. Probably two weeks after the termination. 

The best advice I got when I went through this is to let myself feel. To accept that it was okay for me to feel the grief of this. There is truth in that. I grieved hard for a while. After a couple of months, I grieved a couple of times a month. But still thought of it every day. Now I am not sure if I still think about it every day. I think that loss has become such a part of me that I don’t even notice it is there anymore. Then on Memorial Day 2009, I found out I was pregnant with my daughter. On my niece’s first birthday.  And on that day, I privately grieved again. Because it felt like the right thing to do. Strangely, it felt like the fair thing to do. 

Still, I let myself feel sad. If I want to cry, I cry. If I want to drink, I drink. If I want to write, I write. If I want to look at the baby book, I look at it. It is a process that I have to go through. I let myself feel. It is the sadness I saved up all year.

This is not political. I am not anti-abortion or pro-life. I don’t even think of myself as different than women who terminate pregnancies for elective reasons.  If anything, what happened to me reaffirmed my opinion that this is a matter between a woman, her partner, and her doctor. It is no one else’s business.  It is deeply personal. 

Because pain changes you, sometimes irretrievably. It isn’t fair. There’s nothing we can do to reverse that change inside of us. But we also own it. It does not belong to anyone else. It does not belong to our neighbor, our church, our doctors, our boss, our pastor, or our president.  It is a burden and a treasure. Like a hardened, sharp, rocky part of us that we bitterly accept.  A part of us that we keep tightly clenched in our fists. And that part of us makes us speak louder, hit harder, fight harder. 

I would never change anything. I don’t believe everything happens for a reason. I think this just happened to me because it did. It is part of my life and my world forever. And I am okay with it. I am happy with it because it brought my daughter to me.  If anything truly happened for a reason, it is her. 

But it is no one else’s responsibility to tell me how I should have dealt with it. Or how I should feel.  I will not let anyone do that.

Selling Yourself.

I’m not sure why I am updating here really anymore. I guess I just feel obligated because I have a lot of followers? I don’t imagine that anyone is reading since nothing too exciting is going on in my life.  But enough is going on that I don’t have time to log on here and be witty or something.

Isla

She is fantastic. And smart. And funny. I laugh so loud at her every single day and she always laughs with me, but also says “Stop laffin me!”  She is really starting to show me who she is. And tell me how she feels too. We still struggle with that. 

She can be pretty sensitive. Like tonight she was tired and wanted to go to bed earlier than usual but I did not realize it. I was super frustrated trying to fill out a “pain report” for SSI. I had absolutely no clue what to put on that report and I also realized that I was mailing it in somewhat late. So very distracted.  She became tearful because she wanted to go to bed and when she only asked once, I replied “in a minute honey”. I felt terrible. Of course I scooped her up and snuggled up in bed with her and all was well again. I rubbed her shoulders and told her how proud I was of her because she did so well on her homework tonight with only a little assistance with the letter Q.  I didn’t even have to trace her alphabet letters before hand. Granted, her letters are large and misshapened but I’m kind of into them that way.

I love her attachment to me. I love that she wants to be with me all the time. I love her request for me to sleep next to her some nights but I love even more that when I can’t, she very kindly tells me she loves me and good night anyway.

We officially do not have Medicaid in the state of Kentucky any longer. I am not sure what this means for the rest of the year as far as her therapy goes. We see her speech pathologist tomorrow after school and I will find out then. I guess after that it will just be a waiting game until we hear back from SSI. The speech pathologist told me that she’s never had an autistic child denied SSI. Sounds too good to be true so it probably is. But I’m going to stay positive.

Other Bullshit 

This means everything else in my life I guess. Really there is nothing else in my life but my daughter. So I’m lumping everything else into this small category.  Work is good. Family is good. Dating is ridiculous and it sucks.

I have pretty much stopped honestly. I do not date online. I do not pursue any man. I have met two types of men since I’ve been single:

Men Who Want To Sleep With Me

It doesn’t seem to matter where I meet a guy. Or how I approach him.  Or how he approaches me. They are usually done once they sleep with me.  So I do not do that anymore unless it VERY CLEAR where it is going.  Under any circumstances.  This is a vow of celibacy. I took it about a month ago and to be honest, I have felt much better since.  No one is sleeping with me unless they have been dating me first. Not asking me to “hang out”. Not asking me if they can come over at some god awful hour. Going on actual dates with me.

I am so tired of arrogant, entitled bearded assholes who think nothing of walking up to me and putting their hands on me in a bar. No wonder we have someone like Donald Trump getting away with running for president. He represents a vast majority of the male population. Sorry to get all bitter feminist there but it’s just the plain truth.  And I’m not trying to absolve myself of any responsibility in anything. I make my own decisions. It’s hard to admit, but I am that idiot girl who thinks when someone sleeps with her it is because they like her as a person.  

No. More.  Men are lazy. The minute you give them what they want, they quit putting any effort into you.

Men Who Are Scared Of Autism

These guys represent a pretty small fraction of the types of men I have met. Mainly because only a very small percentage of the guys I’ve been involved with were actually looking to date someone period.  I would say maybe 5%. But I will bet that’s generous.  In any case, every single one of them stopped talking to me as soon as they learned that my daughter has a disability. And yes, I knew it could have possibly been something else.  But I am going to go with my gut and say that it had to do with her autism since they directly told me that or they just became very “busy” literally two seconds after I told them.  Although it has helped me on occasion. Many times if they already knew about my daughter, is a very high and likely chance that they just want to sleep with me.

I considered that perhaps the men I date should be introduced to that part of my life in small doses. But why? There is no small dose with me. My life is very different from others.  It’s nothing that I have to feel ashamed of or hide from people. The right people will not be put off by it. I don’t want a person in her life who thought of her as a “problem” for them, even if it was just in the beginning. She deserves better than that.  The person I end up with should accept her as readily as they do me.

The fact that I even have to consider that is so indicative of our current dating culture. It’s a constant “sell yourself” game. A man I met online once even said that to me. That I didn’t do a very good job of “selling” myself. I wanted to puke. He also said that he shouldn’t have to “break down walls”. My response was basically “Then don’t.”  

Where does someone even get off suggesting that I should try to sell myself? Is that the meaning behind the phrase “on the market”? So terribly offensive. I will never ever ever hide who I am or even change who I am in order to “sell myself”.  I’m not a product that you pick up off of a shelf. I’m a person.  Who refuses to pretend she doesn’t have baggage. People can lie all they want and say they don’t have any baggage. These people are usually just too afraid to find someone with a matching set.  

I will spend the rest of my life alone before I start trying to sell myself to someone in order to get them to date me.  And I pity people who do.  And who knows, I may very well be alone the rest of my life. Because I plan to do absolutely no dating or pursuing of any kind. I’ve been saying the past few years that I want to stay single and that was true. I think I am at a point my life where I could handle having a boyfriend now. But in order for that to happen, that person is going to have to show repeated non-sexual interest in me.  If there is no one in the world who can do that for me, then I am better off being alone with my daughter. I have been alone long enough that I have gotten to the point where I don’t need anybody. I know how to be happy alone.