Autism's Effect on Marriage

This is me and my husband of almost 5 years. In our journey through Autism he is my rock and I don't know what I would do without him. 

A good friend of mine who's son also has Autism just announced that she and her husband of 7 years are divorcing. I can't say that I'm surprised as Autism is all encompassing, it invades our lives and holds us hostage many marriages don't survive. 

Autism has tested my marriage in ways I couldn't imagine before. After Gracie's diagnosis I like many mothers found myself completely focused on Gracie and understanding her Autism. I spent hours a day researching on the internet, I read books, I joined online communities. I tried every new thing I heard of to help Gracie, she became all I thought about, and all I spoke about. My wonderful husband felt left out. He wondered if he lost me to Autism, too. I'm lucky that we are able to talk about it and I'm doing better on focusing on our marriage too.

Another huge issue is that it's almost impossible for parents of Autism to go out alone. Finding caregivers is not easy. There is a look of horror on the last babysitter's face when I explained that Gracie is prone to public masturbation and poop smearing. I try to explain the horrific meltdowns, and her strict adherence to her schedule. Then when we do go out I'm consumed with worry. Since Gracie is non verbal if she is abused or mistreated she has no way to tell me.

I have found that taking time to have a non Autism or kid related conversation is important, as is dating after the kids go to bed.

Our blended family

This picture was taken in July 2009. Pictured are me, Ray (my husband and Gracie's father), The mother of Gracie's older brothers, Alaric (oldest brother), Gracie at 10 months, and Adam (youngest brother)

A big part of our journey through Autism is our family. We are a blended family, my husband was married before me and has two wonderful sons from that marriage. I am truly blessed to be a part of their lives and to know such fine young men. Gracie's older brothers are also her favorite people and biggest cheerleaders. She is so much more engaged and giggly when they are here.

It breaks by heart that by moving for better education she will be separated from her brothers, but also from their mother. People look at me strange when I explain my great admiration for my husband's ex wife and how she is part of our family. If Gracie could talk she would call her Aunt Tamra as a sign of respect and affection for this woman who is a part of our family but sadly there is no good term for your half siblings' mother. I am very blessed that with visits and lots of skype I hope we can stay close.

Gracie also has a younger sister, who is 26 months younger. Gracie doesn't acknowledge her sister as much but Elizabeth finds a way to engage usually be taking a toy or trying to push her sister around. I hope in time that they will become friends.

What a difference a year makes!

A picture from that vacation one year ago. 





I just realized that it was a year ago that Autism first came on our radar. We were on vacation in Salt Lake, until then I had seen some unusual behaviors like insomnia, verbal delays, and super strict adherence to routines but had thought she was ADHD like her father.

In Salt Lake it was a disaster she had meltdowns on a scale I've never seen before and pretty much scared our families. My sister in law finally pulled me aside and mentioned that her son has ADHD and never had the behaviors that Gracie does. My sister in law also pointed out things I overlooked like how Gracie ONLY talked to me and how her comprehension seemed below that of her cousin of the same age.

Then I went out to lunch with an old friend and her daughter who was 2 weeks younger than Gracie. My friend's daughter is Autistic and diagnosed as PDD-NOS. As we compared notes I noticed many similarities. I resolved to bring it up at Graice's 3 yr Well Child Check the next month.

In the past year I feel like everything has changed. Not only have I lost much of my daughter I've also gained new understanding and compassion about the way she behaves. I've stopped getting upset when she doesn't respond to her name and instead take her by the hand. I've learned so much about how the brain works and how Gracie precieves the world differently. I've researched the best treatments options, trying to muddle through science and junk science. I've learned to prefect my icy, blank stare as I take my melting down child out of a store as people look on judging and pitying me.

Most of all I've learned how to celebrate Gracie for who she is, instead of getting upset about the things she can't do I throw her on the bed and tickle her instead. We twirl in circles together and I make funny noises as she laughs. She might not be doing the same things her peers do but I can't let that take away our joy at the things she does do.

Jeaous of other kids

I went grocery shopping over the weekend (my 2 hr vacation without children) and just when I think I've come to acceptance with Gracie's Autism I get thrown for a loop. I was enjoying my shopping trip and playing with my shopping app on my new phone. I went to check out and glance at a gossip rag.

In the line was a little girl about Gracie's age, she looked similar to Gracie with long blonde hair and blue eyes. The little girl was sassing her mother. She was arguing that she had been good in the store and her mother was insisting that she had been naughty. They went back and forth both standing their ground.

I was over come with envy. I assume that little girl is potty trained, and didn't smear her poop on walls. That little girl made eye contact and actually spoke. She spoke in sentences and could express an opinion. I had planned on my life being different at this point.

I had planned on having a typical 3 yr old who would talk, be potty trained, who would dress herself, and most of all who would love her sister. I do love Gracie exactly how she is. I love her giggles, her stubbornness, and her strange little routines, but every now and then I'm struck by what might have been.

Moving

We have made the hard decision as a family that we need to move back to Salt Lake for Gracie's care. Since we started this journey in September of 2011 we have been trying to get Gracie services, specifically speech and occupational therapy, a special needs preschool and ABA therapy.  So far we haven't received ANY services.

We have succeeded in getting an official diagnosis from 4 different places but we would have to depend on the school district for most of our services. I have no issue with the school district but there isn't anyway they can provide the level of care that Gracie needs.

I have secured Gracie a spot at the Carmen B Pingree School for Children with Autism in Salt Lake City Utah. This is an Autism specific school where she will get the best quality education, and also be under the care of a Developmental Pediatrician at Primary Children's Hospital. Gracie will qualify for ABA therapy and hopefully she will learn to do the things that other children take for granted like learning how to talk, use the bathroom, or how to play with another child.

We will be moving to Salt Lake in time to start the Spring Semester in January 2013.

Gracie's slideshow

A slideshow I made for Gracie's 3rd Birthday. I made this before Autism was even on our radar. Now it would be nearly impossible to get her to look directly at the camera.

I will always love this song for a lyric that a friend pointed out. The part that says:

If they knew sweet little you,
They'd end up loving you too.
All those same people who scold you
What they'd give just for the right to hold you.

Makes me cry every single time. 

This is how Gracie spends a good part of her days!

Gracie's Update

Looking over this blog I realized I haven't updated in months so I'll give a brief update here. As I was waiting for the school district's evaluation of Gracie I sought out other professionals to give evaluations of her. In the meantime she has continued to regress to the point that in most areas her 20 month old sister is more advanced.

I had Gracie evaluated at LSU Psychological Services Center where after administering 6 different tests and two different observations she is severely Autistic. I then tried to get her speech services at Baton Rouge Speech and Hearing Foundation where she was too non verbal to administer some of the tests but best they can tell she has extensive receptive and expressive speech delays and her speech is anywhere from 3 to 9 month level. Gracie saw a developmental prediction who also rates Gracie as severely Autistic.

I finally got the educational evaluation back and they also see severe Autism with a functional level of about 12 to 18 months. We have an IEP meeting next month were we will come up with an educational plan.

It frustrates me that we have 4 different agencies to say that she is severely Autistic and is low functioning but we have been unable to obtain any services so far.

Gracie's victories

Even raising a special needs child I want to brag about her accomplishments just like any other parent, so I thought I would share a few about Gracie.

Gracie has started showing affection. For the past few days when I've asked for a kiss Gracie has pressed her lips against mine.  Although Gracie enjoys affection she has difficulties showing it on her own.  It might not seem like a big deal to my friends with neurotypical children but for me it's been bliss.

I'm excited that Gracie is looking at books. For a while she went through a phase where she showed no interest in most items. She has stopped playing with her toys and will only watch a moment or two of a tv show. Now she studies books, carefully examining each page. I wonder if she is making connections, or even teaching herself to read. I wish I could read the books to her but she rejects any attempt to read to her.

Tonight I am hopeful. Tonight I am full of hope that no matter what I will have a relationship with my older daughter. I already have a connection with her and I fight to keep it as she retreats into her own little world. She's also been more vocal and I hope that someday she talks. I feel like I can do anything if she would talk to me.