A Christmas Story

This year I was reflecting on how Autism invades everything including Christmas, and how it's a process of acceptance as our expectations change.

First even shopping is a challenge, few toys even interest Gracie and if they do interest her it's never for long. Gracie doesn't really play with toys as much as she holds them and moves them around, placing the toy in containers and taking them out again. I finally decided on a mini trampoline as her big gift.

 

I ordered the trampoline online and on Christmas Eve after I gave Gracie two different sleep aids and put her down  Ray, Alaric and I started to assemble the thing. It's a miracle we didn't lose a hand or at the very least a finger. After much swearing, failed attempts and scratching our heads at the instructions we got it put together.

Then as I was putting things up Gracie woke up at 2 am, first with a low moan which quickly escalated to full screaming I tried to hold her as we rocked but the screaming lasted over an hour. As she screamed she woke up Elizabeth, who also wanted attention. For a while it seemed they were screaming in stereo. After the screaming stopped they both decided it was play time. Gracie sat in Elizabeth's rocking chair and jumped on her trampoline as I tried to clean up and get everything else set up. Gracie tried to tear down the stockings and I had to take the candy away from her many times. 

Elizabeth went back to bed about 3 but by 7 am I gave up on any sleep at all for the night and woke up the boys. As we were opening presents Gracie fell asleep on the couch.

Sleeping Beauty

 

      

 

 

 

 

 

 

 

 

 

The funny thing is that this is a good Christmas to us. As Autism has taken over we have let go of all of our old expectations. I have come to realize we can never have a traditional Christmas, there must always be adjustments for Gracie. She may never "understand" Santa, Christ or rip open wrapping paper. New toys are still scary for her, Gracie doesn't look at camera so if she's still for a picture it gets posted, and I feel blessed if she even wears clothes. But we spent Christmas together as a family and she had a good time once she woke up which is as good as it gets for us. 

5 Reasons Why My Autistic Daughter is Like a Cat

My husband and I have often talked about how Gracie is like a cat. They say all cats have Aspergers but maybe all cats are just Autistic.

1. Gracie is very affectionate but only when SHE feels like it. Like a cat she will sit on your lap and make happy noises but only when it suits her, and only on her terms. Usually when it's inconvenient to me, while typing, trying to make dinner or attending to her sister. Of course I try to put down what I'm doing and love on my daughter. Our cuddle time lasts until Gracie has had enough then she hops down and continues with her day.

2. Gracie is extremely smart and is capable of doing much more than she's given credit for, but like a cat she doesn't respond to commands. A cat is as capable as a dog to fetch, sit, roll over, and to shake hands the difference is that a cat refuses to do so. I've caught Gracie matching letters, playing appropriately with shape sorting toys, and dressing her dolls. At evaluations she sits there staring blankly as she is scored as not having the skill.

3. Gracie only sometimes responds to her name but will always respond to food. Just like a cat will come running to the sound of a can opener, Gracie comes running to the rustle of a  box, she has an uncanny instinct about when I'm about to make a snack and is the first to want a bite.

4. Gracie is a crazy ball of energy. Do you know how a cat will be sitting perfectly still then out of no where run around the room in a terror, up and down furniture, leaping around then run back to their spot and sit down like nothing happened? That's Gracie out of no where she gets crazy, and sequels as she runs circles around us then stops as if it never happened. 

5. Gracie is driven by her own needs. A cat naps when she's tired, baths her own fur when taking a bath,and eats when hungry. Gracie is also driven to take care of herself without assistance. When Gracie is tired I find her on the couch asleep, when she is hungry she climbs counters, and pushes chairs to cupboards, when she's dirty she removes her clothes and sits in the bathtub waiting for me, when her pullup is wet she removes it and puts a fresh one on. Sometimes I wonder if I left Gracie home alone will the right supplies if she would be okay. Somehow I think she would find a way to take care of herself.

My Other Amazing Autistic Child

This is Adam my amazing step son who has PDD-NOS

My first exposure to Autism happened in the summer of 2008 when my then 6 year old step son came to our home for his summer time with his father. At first I didn't know what to make of him. He was a sweet, somewhat quiet kid who seemed shy and a little delayed.  I wasn't quite sure how to respond when his first reaction to seeing an ultrasound picture of soon to be born Gracie was "she looks like a demon baby". He said it so matter of fact that I was stunned, not really offended. I also experienced my first Autistic meltdown with him when on a road trip he spilled water on his pants. Now I regret how upset I got not understanding this trigger.

Over the years as I have came to know Adam I realize he simply says what he thinks not to be mean or offensive just simply facts as he see's them. When he reminds EVERY person we meet that I'm his STEP mom and not his REAL mom it's just Adam and his literal thinking not wanting anyone to mistake his mother and I.

I love his amazing memory and how he can remember facts about Lego sets and the name, now many pieces and how much they cost. I love how hard he tries to do things that come so easy to many of us. I love how he has his own unique way of talking. Instead of saying his sister is in the kitchen he will tell me that his sister is in the room with the oven.

He has taught me about how to rephrase instructions in a way that he can understand and how to answer extremely literal questions but most of all to let go of exceptions not only about him as a person but how to define my relationship as a step mom.

Gracie's Birthday

Gracie is 4 years old today. I'm having a hard time believing that the tiny preemie I brought home 4 yrs ago is so tall, with such long pretty blonde hair. I don't feel like I can possibly have a preschooler but here we are 4 yrs later.

Today has had so many mixed emotions, this isn't how I planned. Part of me mourns that I'm not going to throw her a Princess Party with her friends, where we wear sparkling crowns, sip tea, and make up our pretty princess names.

The truth is that Gracie has no idea it's her birthday and has no concept of her age. She has no idea that tonight we were celebrating her. She just knew she likes pizza, and cake. She did love our guests her older brothers, their mother (her "Aunt" Tamra) and her brother's girlfriend. Gracie spent the evening in her diaper and pj shirt, and we gave her playdough as a gift as it fills her sensory needs.

But we did have a good evening Gracie loved the dinner and her favorite people were with her. In the end it's me who mourns over what Gracie might have been, she's happy just to be here.

First Day of School

Today Gracie starts pre k at our local elementary school. I have so many mixed emotions. I'm like any other Mama sending her child to school. I'm apprehensive I hope she likes her teachers, I wonder what she'll learn, I hope the other kids like her, and I want her to love school.

I took her in to her class with huge smiles, then I got out to my car and sobbed like a baby. My baby is taking her first steps of independence and it's bittersweet. I hope she learns the skills I failed to teach her and learns from both the teachers and other children.

Most of all I can't wait until 3 pm when I can go and pick her up.

Fly Away Movie Review

I recently saw a movie that was so honest about the struggles of low functioning Autism it made me cry. I found Fly Away on Netflix instant streaming. It's the story of a single mother and her struggles to raise her low functioning Autistic daughter. I loved how it didn't flinch about the meltdowns, and the exhaustion of  having a child with big limitations. It also showed how Autism contributed to the end of her marriage.

But at the same time it also showed how much she loves her daughter and the small moments that the parents of Autistic children live for. It showed that under all the Autism she was a girl who loves her parents, ice cream, and her stuffed lamb.

Sick Kids!

Gracie woke up yesterday running a fever and acting lethargic and my heart sank. Having a sick kid is hard, but having a sick Autistic kid is even harder. I have no idea if anything hurts, I'm not even sure she knows as I suspect Gracie is hyposenstive to pain. It could be an ear infection or just an average virus. Of course the worst ran through my head. I suspected strep throat, ear infections, even UTIs. All the common aliments that my friends complain about.

I feel bad because Gracie is almost never sick, In fact she's the second healthiest kid I know beat only by her sister. I almost don't know how to care for a sick child since my own children are so rarely sick. I didn't remember how often to push fluids or if you take a child's temperature under their arm if you add a degree or subtract one.

I called the nurse praying that I didn't have to take her in. Going to the doctor is a very traumatic experience. Gracie HATES to be touched, and  it will cause a major meltdown. By major meltdown I mean inconsolable screaming, hitting anyone who touches her, and throwing things. I'm not even sure a doctor would be able to get close enough to examine her without Gracie being physically restrained.

The nurse finally called me back and after reviewing everything we decided to wait 3 days and to reevaluate. Thankfully Gracie's fever broke this afternoon and she's acting normal or at least as normal as she can. I am however dreading her 4 year well child checkup at the end of the month.

The Unexpected Blessings of Autism

I was talking to a friend of an Autistic little boy a little older than Gracie. We started talking about how Autism has changed our families but also ourselves. We are completely different women and mothers than we were before we started our journeys. Here are some of the unexpected blessings of Autism.

1. I take life at a slower pace now. Gracie is not going to preform with her peers she is well below them in skills and we don't know if she will ever catch up. Most other almost 4 yr olds are busy preparing for pre k and kindergarten. They are busy learning their alphabets, number, colors, shapes and how to spell their names. Gracie is under to pressure, and we follow her lead.  At this point I don't even know what her age appropriate milestones even are.

2. I've learned to savior every single victory big and small. Even if Gracie says just a single word it's more than she said yesterday. If she poops and doesn't smear it all over than I dance around the house with her. Every time Gracie looks when I call her name, or does a simple task such as throwing away her own diaper we celebrate.

3. I've learned patience like I never dreamed of before. I thought I was patient before after all I was a wife and a mother, I'd survived colic, the terrible 2s and everything in between. Then when Gracie's Autism got severe and she began to meltdown many times a day I learned patience at another level. Now instead of losing my temper on the 3rd meltdown I hold her tightly as we rock and I hum. I feel helpless not knowing what upset her but desperately wanted to give her comfort in my arms. 

4. I've learned to to care what any one else thinks.  A couple of years ago I would have died of embarrassment if my child threw a fit in public, tried to take off her clothes, or wanted to carry around a lone shoe. But now all of that is common place and I don't care what anyone thinks about it. Gracie is different and always will be, a person might not notice it at first glance but they will see it at second glance. I don't have the luxury of caring about strangers opinions anymore. It's too draining and my family takes ever last ounce out of me as it is.

5. I've learned how to live in the moment. Once of the most amazing things about Gracie is she lives for now. She doesn't seem to remember yesterday and she has no concept of tomorrow. If she's happy she erupts into giggles simply because she feels good about right now, or if she starts crying something right now upset her. Gracie even has mood swings where she will go from laughing to crying for no apparent reason. I'm learning how to let yesterday go with Gracie and not worry about tomorrow because I can be happy for this one moment.

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. 

Home visit

We had our home visit with the school psychologist and she school speech pathologist. At first I was upset because they were 45 minutes late to the meeting. They watched Gracie for about an hour, Gracie did show her rituals she checked to make sure the potty seat was on the potty about 5 times in the hour, she paced around the room quite a bit, and didn't play with any of her toys.

Because Gracie did engage with me a little bit the psychologist isn't convinced she's Autistic and mentioned Sensory Processing Disorder. I know she has SPD but I don't think that explains everything and I'm pushing for an Autism Diagnosis hopefully the next few months fly by and we are able to see the Developmental Perdition for the medical evaluation.

Our day at park

Yesterday I took Gracie and Elizabeth to the park for a play date with some friends from our Attachment Parenting play group. I was looking forward to it as both girls always enjoy going to the park.

It was in many ways a heartbreaking experience. Gracie always loves the swings, and Elizabeth is excited by the whole park. Yesterday was different after only a few moments on the swing Gracie started to fuss so I put her down. She wondered almost aimlessly around the park. The wood chips held her interest for a few minutes but mostly she just walked around.

It made me sad as I remembered that just a few months ago she loved to climb on things and swing for as long as I would push her. It used to be that most people wouldn't notice anything different about Gracie now it's painfully obvious to everyone that something is "off".

I am continuing in the search to find things that Gracie truly enjoys, and we are going to a bounce house next week. I'm also going to tempt her with a new toy today.

Introduction

I am starting this blog to help sort out my feeling as we begin the process of guiding our daughter newly diagnosed with Autism. I hope this blog will help me to learn to deal with and accept this new journey and perhaps serve as a resource for others on the same journey.

I'm Martha a married stay at home mom of two girls Gracie who is 3 and Elizabeth who is 17 mos. Gracie is newly diagnosed with Autism. Since I'm not sure where to start I'm going to start with Gracie's story.

We planned to have a baby and in Dec 2008 we started trying to conceive, I was delighted when we got a positive pregnancy test at the end of January. Most of the pregnancy was uneventful, except for the fact I was measuring small the entire pregnancy. Finally at just before 35 wks I had another ultrasound which revealed that Gracie had only .9 centimeters of fluid but she was also breach. After a few days of stress tests and ultrasounds I had an emergency c-section.

Gracie was born at 5 lbs 5 oz and 18 inches long. We were lucky that she was able to room with me and never spent a moment in the NICU. The only problem we had was jaundice. Gracie was under lights for 3 days but in the end was able to get the levels down and started to develop normally.

We didn't notice anything different about our daughter. She did things about the same time her cousin did who is 7 months older. She learned her body parts, followed simple directions, and smiled at everyone who talked to her. I did notice that her cousin was more in to Gracie than Gracie was into him but I thought maybe he's just too overbearing for her.

In December of 2009 we started to consider moving from our Salt Lake home to just outside Baton Rouge to be closer to my step sons from my husband's previous marriage. We also found out we were pregnant again in March of 2010. We decided to go ahead with our move I figured it was much easier to move pregnant than with a newborn.

We arrived in Watson LA in May 2010. It was a month full of changes, I was now officially a stay at home mom, we were getting used to a different culture, food and customs. Gracie was a relatively easy child, and my pregnancy continued uneventfully and to term. Elizabeth was born at the end of October in a VBAC. I thought it odd that Gracie didn't acknowledge her sister and continued to live her life like an only child. She never hugged her sister, wanted to help, and would sit on top of her to get my attention if Elizabeth was on my lap.

I thought it was odd as most other 2 yr old big sisters her very strong feelings about their baby siblings, but was relived at least there didn't seem to be any sibling rivalry. I also noticed sleep issues, Gracie simply has a hard time falling asleep at night. I compensated by allowing her to bring some toys to bed. She was also a little rigid in her routines but I thought all toddlers loved their routines.

I noticed other 2 yr olds were speaking in sentences and learning shapes, letters, numbers and colors, and Gracie could do none of those things. I knew something was "off" but she seemed to fit many ADHD symptoms. She had sleep issues, huge meltdowns, and trouble focusing. I knew 2 was much too young for an ADHD diagnosis but I felt better thinking I knew what was wrong.

On a family vacation to Salt Lake City in July 2011 we were miserable. Gracie had several meltdowns a day and even little things like going out to eat resulted in hours of screaming. My sister in law pulled me aside and mentioned that her son has ADHD and he behaved nothing like Gracie.

I brought up my concerns at her 3 yr check up and was given a referral to a diagnostic pediatrician. In the mean time I started to do some more research on the internet and was surprised to find she fit many of the autism symptoms. I felt sick as I realized my lovely little girl is Autistic. I felt so silly for not noticing before and kicked myself for not getting her early intervention.

We finally got an educational diagnosis thru the school district and we are waiting for our medical evaluation. Right now Gracie seems to be regressing and losing things she once did like even more speech and pretend play. We hope to start therapies soon.

Welcome to Holland

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…


When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.


After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."


"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.


But there's been a change in the flight plan. They've landed in Holland and there you must stay.


The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.


So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.


It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.


But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."


The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.


But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley