My Special Mystery

On this blog I haven't mentioned much about my other daughter Elizabeth, so today I would like to introduce her to my readers. Elizabeth is Gracie's younger sister, she is 3 years old and a big mix of both Autistic and typical traits.



Since Gracie was diagnosed when Elizabeth was about 18 months old we have been super aware and watchful about her and watching for any sign of Autism. So far we don't know what to think.

1. Elizabeth's speech is about a year delayed, she has almost no functional language and the majority is scripting, and repeating. (Possible sign of Autism)

2. She loves to play with her toys and does engage in pretend play, often pretending to feed her dolls and tuck them into bed. (Typical)

3.  It's impossible to get her to look at a camera (Possible sign of Autism)

4.  Awesome joint attention skills, will look where I point (Typical)

5. Rarely acknowledges when name is called (Possible sign of Autism)

6. Very engaging with parents (Typical)

7. Little interest in other children (Possible sign of Autism)

8. At age level in motor skills (Typical)

9. Mild to moderate cognitive delays (Possible sign of Autism)

10.  No noticeable sensory sensitivities. (Typical) 

Right now Elizabeth goes to the same speical needs preschool with Gracie. She gets a little bit of speech therapy and we hope to increase that as she gets older. Right now I go back and forth about if she's on the spectrum, I do however have hope that she can be mainstreamed by Kindergarten.

It does sometimes get to me that I have two children and they are both speical needs, but they really are such speical little girls I feel honored to be their mother.

My Doctor Who Obsession and How it Relates to Gracie's Autism

As most of my friends know I am a huge Whovian. For those who don't know what that is it's a fan of the British science fiction show Doctor Who.

A note for those unfamiliar with Doctor Who, it's a tv show that premiered in 1963 about an alien called The Doctor who travels through all of time and space in his ship called a TARDIS which is stuck in the shape of a blue police box from the 1960s. He brings "companions" which are people he meets and invites on his travels. When is race is faced with death they can regenerate, which means he can change every cell in his body which means he literally turns into a different man.

 

I didn't start watching until March of 2013, but I was hooked. Some of you might wonder why I'm writing about science fiction on an Autism blog. Well it's because it's my escape. For an hour I am traveling through time and space having adventures, meeting new creatures like talking trees and trying to figure out the mysteries of the universe.

For a little while no one is Autistic, and problems don't have to do with smeared poop or meltdowns or being up at 2 am. The problems are greater yet smaller, yes the Earth might be invaded but The Doctor and his friends will save the planet.




It's also nice to have one hobby that doesn't have to do with Autism or with Gracie. I'm not limited by not being able to go out, spending most of our money on Autism related things, or having to find childcare. Being a Whovian is as simple as pushing play on Netflix or reading a novel. No one cares I'm 30 something mom who mostly lives in PJ pants and oversized tee shirts. I'm just another fangirl.

I think everyone should have their own Doctor Who, but especially parents of speical needs children. Please for your own sake find a little escape, something that doesn't involve your child or your advocacy.

Gracie's Story

I realize many of my new readers don't know Gracie's Autism story so I have included below:

Let me first point out that the regression that I am about to describe is rare and is only estimated to happen in 1 in 70,000 children with Autism.

Gracie was born at 35 weeks via c-section on August 25^th, 2008. It was the end of a pregnancy that had been wonderfully normal until 34 weeks when it was discovered that she had almost no amboitoic fluid and an emergency c-section was performed. Gracie was absurdly healthy despite her early appearance, she never spent a moment in the NICU, roomed in with me and went home with me.

Gracie hit all of her milestones on time and by the time she was 6 months old she was about a month ahead of her age. She babbled and cooed, around 10 months she started saying simple words, like ball, ma, and da. She walked at 12 months.

Gracie was a typical toddler in every way, she loved Elmo, puppies and babies, she watched Sprout, showed me everything she could see, and loved to play with her cousins. In 2010 we had two major changes to our family, we decided to give her a little brother or sister and we also decided move to the state where her brothers from her fathers first marriage lived.

In May 2010 we made the move and in October 2010 we welcomed her little sister Elizabeth. Gracie was 26 months old. The first sign that anything was different with Gracie happened when I brought Elizabeth home. I expected Gracie to either love the baby or to be intensely jealous, perhaps both. Instead I was surprised when Gracie had no reaction at all to her sister. I to include Gracie but she acted as if her sister simple didn't exist. I would be nursing Elizabeth and Gracie would try to sit on top of her, if I put the baby down Gracie never even looked at her. I was puzzled and asked other friends and no one had experienced such a thing, but we decided as long as she didn't hurt the baby or show aggression then we shouldn't worry too much.

For the next year or so Gracie stagnated in her development, I brought it up to her pediatrician, and he dismissed by concerns as that she was still on the spectrum of normal toddler behavior and adjusting to a cross country move and a baby sister. For the most part she was still a typical toddler, she loved her Elmo blanket, she preferred pink, and

I noticed that her tantrums were intense and that she needed routine and sameness. She had a hard time falling asleep and at times wouldn't answer to her name. I researched some symptoms and felt that ADHD was likely due to family history her symptoms.

We went back to our hometown for vacation right before Gracie's 3^rd birthday and for the first time I noticed how different Gracie was from her cousins. They didn't have huge meltdowns over new shoes, or scream for hours over changes in the routine. I meet up with a childhood friend with a child with Autism and for the first time it crossed my mind my daughter might be on the spectrum.

I brought up my concerns to Gracie's pediatrician and he wrote the referral to see a developmental pediatrician for an Autism evaluation but it was a 6 month waiting list to see him. Right after Gracie turned 3 I noticed she was talking less, then within a few months not at all. Over the next 6 months she stopped identifying shapes, colors, and numbers.

By the time we got to her medical evaluation she was diagnosed with severe Autism and that she was functioning at about 12 to 15 months old.

Gracie is now 5 years old and sadly still functioning at the level of 12 to 15 months old, but as we enter 2014 we have new plans and some things coming up that we hope will help. I refuse to believe that all the skills, language and bright intelligence is lost. I have to hope that somehow we will be able to recover from the regression.

New Years Resolutions

With New Years here and  and everyone making resolutions I thought I would make a few of my own. I have the usual ones of losing weight, saving money, and being a better house keeper. I thought I would share my Autism related resolutions.

1. I resolve to try to enter Gracie's world more, and leave mine behind more. Instead of trying to get Gracie to do typical things. Instead of trying to get her to give her sister a hug, or to stop putting everything in her mouth, this year I resolve to spin in circles with her, I resolve to stand on my head and to watch the cats out the window, I resolve to eat a bowl full of tarter sauce.

2. I resolve to stop comparing Gracie to typical children. Gracie has never been typical to me, she has been amazing, speical, and my greatest achievement and challenge but never just typical. I need to remember that doesn't change because she is on the spectrum. She is still my sweet, funny and beautiful daughter.

3. I resolve to pay less attention to the evaluations. They only tell me what silly skills she hasn't mastered. I really don't care that Gracie can't string beads or sort colors. They never talk about her easy laugh or bright smile. They never talk about how she loves to cuddle, or how she asks for kisses by pressing her cheek to your lips. I would much rather have a child that snuggles with me than one who can string a reckless.

4. I resolve to never give up. I know that no matter how low functioning Gracie is that she can and does learn new skills. She may never be verbal but we WILL find a way to communicate. We might exchange pictures or sign but I know there's a whole world inside her head that she wants to share. I resolve to help her find it.

5. I resolve to continue on my mission of Autism advocacy, awareness and education. I am the only voice my daughter has and I resolve to make it count.

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.