Introduction

My name is Todd Graham, no, not that Todd Graham sports fans.  I am not a therapist, I am not an autism specialist. I am a father of an amazing little girl who happens to be on the Autism Spectrum.  I decided to write down my experience going through my daughter’s diagnosis and learning about treatment options, etc. I am 32 years old.  I don’t claim any expertise in anything really. I’m an average person and wanted to tell my experience, thoughts, and feelings of navigating my child’s diagnosis.  

I work in Law Enforcement, I won’t say which agency to keep things private.  I’ll keep some facts vague to to protect my family’s privacy.

I grew up in Utah which is an interesting place with a lot of interesting customs which I didn’t realize were different than other places.  

Our Little Miracle

To give some context to when I’m going to explain we need to go back a few years.  Like most stories this starts with a boy and a girl. I met my wonderful wife in 2007 and we got married in 2008.  We were both 21 years old and too young and stupid to know any better. We had a grand plan of being married for a year and then having two children.

Just like the saying goes, “life happens when you make other plans”.  We did not expect to have infertility issues, I don’t know if anyone does, but they happened and we had to deal with that emotional rollercoaster.  That is a different story altogether. Four years we tried and tried to have our baby.

In 2013 after trying and giving up on fertility treatments, we found out my wife was expecting.  We took 7 pregnancy tests and ran to medical center that would do a blood test on a Friday evening just to make sure.  We were beyond excited and the pregnancy went perfect. Well, it always goes perfect for the guy right? In my mind it went perfect.  My wife may tell you otherwise.

On a December morning in 2013 my wife and I went into the Riverton Hospital in Utah to have our baby.  My wife was being induced, which was nice because I could plan everything. I took the whole month of December off for this.  It was the biggest event of my life.

I remember so many things from that day, but the thing I remember most is the first time I saw her, my little Haven.  She was a perfect baby girl. here were no defects or health problems. I had been waiting to meet her for 4 years at this point.  I even remember asking her where she had been. She was a beautiful curly haired, blue eyed little baby. I immediately felt more love for her than I thought I had the capacity to feel someone.  Don’t get me wrong, I love my wife and the rest of my family, but this was different. This was fatherly love, it was unconditional and I felt an immediate connection with her. She was my little girl, my little buddy, and my purpose in life changed that day.

Haven grew like most children.  She crawled at the normal time. She was perfectly healthy and walked at 11 months.  She started saying “Da Da” and “Ma Ma” when she saw us. She was perfect. For the first 15 months no one suspected any delays or anything close to Autism.

My wife was always on the lookout for it because she had worked with children on the Autism Spectrum for over 15 years.  First in a school for Autism and then doing in home respite care for some children. She knew way more about the subject, but we will get to that in a minute.

The Pause/ My Denial

2015 was almost all bliss, we finally had our little girl and she was a beautiful curly haired, blue eyed girl.  Towards the end of 2015 I received a promotion at work and we took a family trip to Hawaii. Everything was going my way.  

2016 was an interesting year for my family, sometime in 2016 Haven’s development was paused.  I say paused, because I don’t remember any regression. It was like someone pressed a pause button.  She stopped learning new words and was not talking as much as she should. It was as if she stayed at 18 months.

We had her assessed by the school district and they said she just had a speech delay.  My wife started to become more and more worried about Autism. I remember telling her it would be fine, and just wait until she’s a teenager and I think she doing drugs or breaking the law.  

I thought my wife was amplifying the symptoms because it’s what she has done for a living for a while.  We played this back and forth for a while. We were not ready to accept out perfect little angel was different.  We were worried we would get a diagnosis and she’d “snap” out of it and it would be on her record for the rest of her life.  

During this time, we found out my wife was pregnant again.  It still didn’t ease her worries, but gave me another excuse to ignore her concerns.  I would say she was just hormonal, I know, It’s amazing she sticks with me.

Sometime in April I remember coming home and Haven didn’t acknowledge me coming in the door.  She didn’t look at me, she didn’t run up excited. Just nothing…. It was like she was in her own little world.  

The next day, my wife called me crying.  She was 99 percent sure in her mind we needed to get her tested for Autism, or at least get her into some treatment.  I remember this day because I had to do my semi annual firearms qualification. It was the day I first considered my little girl was autistic.  

I hung up with her and couldn’t speak.  I stared at the wall in my office for a little bit and then went to the shooting range with my coworkers.  I don’t claim to be the best shooter in the world, but I usually do alright. Not that day, I couldn’t qualify on anything.  The only thing that was on my mind was, “I’ve lost my little girl” and “nothing will work out how I planned”.

I remember riding home that day and talking to my partner.  It was the first time I expressed to anyone other than my wife my concerns about my child’s development.  He kind of played it off and said no way, she will be fine. I didn’t need him to say anything, I just needed to say something out loud.  I felt a lot better talking to someone.

Everytime I would talk to my wife I felt like I had to be the strong man and give her a shoulder to cry on.  I can’t be weak, I’m a big tough guy. This wasn’t working and I hadn’t fully realized how mentally draining this process was yet.   Sometimes my line of work tells people to not show when they need help. I felt like I needed to be strong, and being strong meant not acknowledging emotional pain– toughing it out.  

My wife and I were getting closer to being on the same page and had valid concerns.  Haven wasn’t even two yet, so we decided we would wait and see. Maybe she would “snap” out of it in the next 6 months.  We enrolled her in speech because that was the biggest symptom.

I was naive enough to believe this was working.  

Baby Sister

In August of 2016 we had baby girl number 2. We were happy to welcome another miracle.  I immediately felt that love and connection with this little baby as well. Haven was hanging out with Grandma while we were at the hospital.  

The day after the baby was born, I left my wife at the hospital and went home to spend some time with Haven.  We played, we watched movies and we had a good ole time together. Everything was looking a lot better in my opinion. She was just a fun little 2 year old girl.  I remember thinking, “see she’s fine, it’s just a speech delay”. This was the last time I remember thinking this way.

Then it was time to take Haven to meet her baby sister.  I was so excited to take her there. I wanted to see her reaction.  She had always viewed the world with a lot of wonder and amazement. I remember every step we took into the hospital.  I remember getting her out of the car and I said, “Haven, let’s go see your baby sister”.

She jumped excitedly and grabbed my hand and started to say “baby sista, baby sista”. We walked past a gift shop full of stuffed animals and Haven didn’t even notice them.  She was determined to meet her baby sister. We got on the elevator and she said it again, “baby sista, baby sista!”

We got to the hospital room and she gave her mom a big hug, but ignored the baby.  I thought, maybe she doesn’t see her. I placed Haven and the baby on the bed. Haven went out of her way not to look at the baby.  We tried setting the baby on her lap and she would have none of that. She would quickly move.

After numerous attempts to get her to meet her baby sister.  Haven finally touched her nose, while looking away. I still have this picture and I treasure it now, but at the time I didn’t know what to think.  After the picture was taken she got right up and moved to a different part of the room. It was as if she didn’t want to acknowledge the baby existed.

After that the old pause button was hit again.  We were able to work with the school district to have her start preschool right when she turned three.  This was the beginning of a very frustrating process. The hope was she would have more social interaction and start using more words.  

The school district initially put Haven in a regular preschool class.  We would take her and she would be so happy to be there. We would pick her up and she would still be happy.  We thought nothing of it. We figured she must be doing well. She brought home artwork and was a very happy kid.

The school district was doing a whole workover on our little girl.  They were assessing her in the classroom over and over again. I wish they would have told us this.  We assumed everything was great at preschool until her teacher called my wife.

She called saying we needed to set up an IEP meeting and asked if anyone had ever talked to us about Autism Spectrum Disorder.  They sent home some papers for us to fill out before the IEP and set a date for when I could be there.

At this time we had already set up three different appointments to figure out if Haven had Autism Spectrum Disorder.  One was at the school my wife worked at for over 10 years another was at the Children’s Center in Salt Lake. The last one we had a little consultation with a person who does nothing but Autism Diagnosis.  She set us up with an appointment 6 months later.

We were already looking into it and seeking professional help.  All these places sent home these questionnaires about what our child can and cannot do.  Some of them wanted us to fill it out together and some wanted us to fill them out seperate.  

We went in to Haven’s IEP with appointments set up to see two specialists in a month or so.  They began to talk about all of our child’s bad behavior in preschool. All of which was news to us, because they never told us she had a bad day or anything.  She was just happy when we picked her up and happy when we dropped her off.

Her teacher was explaining everything in a judging tone in my opinion.  She was sitting there telling me my sweet little Haven was weird. I hated that word weird.  She focused on everything Haven couldn’t do. Papa bear started to come out and started to explain to them about all the awesome things my child could do and they don’t know my kid.  I KNOW MY KID.

For two hours I heard this lady tell me everything she thought was wrong with my child.  This was a hard pill to swallow. In my mind, the school was the bad people. They didn’t know how to treat my kid and it’s their fault.  

They said they were moving Haven into a functional skills classroom.  They said she needed more one on one help. They advised us to have her tested for Autism Spectrum Disorder.  I remember being so mad at this preschool teacher because of all the negativity, but now looking back on it ,she was just doing her job.  She needed to tell us her concerns and we wouldn’t be where we are at today without this IEP meeting.

 

Diagnosis

Sometime later, We took Haven to the school my wife used to work at to have her assessed.  I remember going into it eager for answers. We had spent the last year going back and forth on whether to get her tested.  Now I just wanted to know how to help my child. I was ready to ask for help.

The people doing the testing worked with my wife when she worked at this school.  We walked in and the women who used to be my wife’s boss took Haven to a play area to assess her.  We walked upstairs to an office with another women who my wife was very familiar with.

My wife introduced me to these people and they exchanged pleasantries.  They knew each other a lot better than I had realized. She started asking us a million questions about Haven’s behaviors and the things she’s learned and developed.

These questions went on forever and all she told us at the end was “I’m not sure”.  According to our answers she wasn’t confident in making a determination and wanted to see what the other person observed.  

The other person came in and shared her observation.  She listed behaviors associated with Autism. She said Haven barely reached the criteria, but she is on the Autism Spectrum.  She said sorry and they both went on to explain.

Both ladies, who worked with my wife, started speaking to us saying “you know” in front of a lot of things.  Because, my wife knew.

 

 I didn’t.  

 

I wanted to stop them and scream. “I DON’T KNOW”. I tried but I couldn’t speak, it was as if my tongue was swollen and motionless.  I just sat there listening to what they said my wife already knew.

I should have found a way to speak up, but this became a common theme everywhere we went.  They assumed I knew all about this stuff because my wife did. I didn’t and it was very frustrating.  We signed up for a home program through the school, which they explained would cost me 500 dollars a month and put her on the waiting list to get into the school.  

I left the school feeling relieved, and confused.  I was relieved because I felt there was a path to help my little girl now.  I had no idea what to do before, but I was confused because I didn’t know what the path was.  I had no Idea the journey was just beginning and not ending.

A week later we went to the Children’s Center in Salt Lake and Dr. Goldsmith gave Haven another Autism Spectrum Diagnosis.  He then talked to us and asked how we were doing. My wife talked and talked and talked with him. I gave short one word answers and he could tell I wasn’t ready to talk about it.  He set us up with monthly appointments and told us about a Play 2 Learn class with using a floor time model. All this speak was foreign to me.

I started going through thoughts and emotions I didn’t expect.  I have always been in the position of not needing help, but providing help.  This time was different. I was there for my wife and it took me too long to realize that I needed support for me as well.  I’m a big strong guy and when everyone would ask me how I’m handling things I’d shrug it off and say I’m fine.

I was far from fine. My wife was outwardly hurting and seeking support through mommy groups, friends, and family.  I was just pushing it aside to be hers and my little girl’s support.

I was not familiar with the world of Autism. My wife was and everyone knew she was so they assumed we were the most prepared parents for this diagnosis ever. We still went through all the stages of acceptance, I say acceptance because looking back at it it wasn’t grief.

Morning the Child I lost

 

I’ve often thought of my family I would have. I would joke with fellow cops about what obstacle course I’d send potential dates through and such. Even after Haven was born I’d be often think of the person she would become.

Even if we don’t mean to as parents we immediately project dreams and expectations on our children. We had waited so long for her, these dreams and expectations were very well crafted.

None of those plans included Autism which threw a giant monkey wrench into my future plans. After diagnosis, I found myself seeing older children of friends and thinking I’ll never have that.  I started to dwell on what I thought my child’s limits would be.

I would hear or see someone on Facebook post about their kid going to prom, getting their license and doing normal milestones and think that would be nice.

One day I read a family members Facebook post about how their kid told their first lie. I stared at it for a minute. I thought I would love for my kid to lie to me. I’d love for her to say anything. I’d love for her to acknowledge me again. I never shared my thoughts with anyone.  I have never written those down till now. Remember I’m the big strong guy, right?

Around this time I started to notice when Haven was in her own little world. I didn’t understand this world but I wanted to know what she saw. I was way too focused on her limitations at this point to see the amazing abilities she had at the time.  This was a rough time for me. My favorite part of my day used to be coming home and seeing her excited to see me. I wasn’t getting that anymore. I would come home and wouldn’t exist to her.

 

Play 2 Learn

 

Around this time we started a program called Play 2 Learn. It was a floor time class. It was every Friday morning for a few months. We would play with our kids and then drop them off and we would receive instruction on how to interact better with our children. There were a few other parents in there.

They would record us playing with our kids and tell us how we can connect better. It was a class to teach us to enter into her world.  It was the first thing we did that didn’t think we already knew all about it. I took this class more serious than any class I have ever taken. It was teaching me to just play with my kid. Don’t try to teach her anything.  Just play and show her you wanted to be in her world.

I took the homework very serious as well. I started doing my floor time sessions with my kid more than they recommended.  I did that because I saw a change. Mostly in myself and some in my kid.

The first class taught me about being “with my kid”. No distractions, no phone, tv or anything. Just be with her while she plays.  Haven didn’t seem like she noticed me at first. Usually after a few minutes of this I would give up. This time I was patient.

A couple minutes later she started handing me toys. I started to parallel play with her. Not much more happened but she let me play with her and around her.

I learned so much from this class. Don’t ask questions why you play. Just play. I was only supposed to test these classes three time a week. I started to play with my kid every day when I got home.

It was the highlight of my day and I almost, almost because one the big tough guy remember, cried one day when I was greeted by Haven when I entered the door. She was excited to see me again. She knew I wanted to be a part of her world and she started to soak up every moment.

 

Change of thought

 

I started to connect more and more with my little Haven. I started to notice all her strengths and areas where she was far more advanced than her peers at her age.

I realized she had SUPER POWERS.

I stopped seeing her Autism as a syndrome that ruined our family and started viewing it as her super power. I started celebrating her differences. She was my super girl and she allowed me to be her side kick now and again. I was Autism Dad whose only power was having an amazing little girl.

I would take her to the park by our place and I would notice her play skills were way above her peers. Her patience was too. I know that sounds weird to say my Autistic child is super patient but she was.  She climbed better and had more fun than her peers. I got to a point to where I was felt sorry for parents of neurotypical children.

She had a sense of wonder and excitement about everything. I wish I could bottle it and sell it. I’d make millions. I have a little superhero and I wouldn’t change her.

The only thing that changed in this space and time was my attitude and my attention. My kid is very aware when people are not interested in what she is doing. She doesn’t care if you are interested but if you are not she will move on without you. You would be the one missing out. I missed out for a while and still do from time to time.