We Owe Our Children Happiness

Raising Autistic children can be very different than raising typical children. We speak a different language, we have different concerns, we have different goals, and we have a different grief. I totally understand the grief over the loss of our dream of a typical child. I understand that it's hard, it's hard to have a child that has so many unique needs and challenges. Our heart breaks for the burdens and grief they face.

However our children are still children. They pick up on our attitudes and emotions. I have no idea how much my girls understand or comprehend about what goes on but every Autistic person who communicates say that they understood far more than people knew.

Then I began to think about how awful it must be to feel like you are a disappointment to your family. How soul crushing it must be to know you are the reason your mom cries. Then I came to a simple epiphany. WE OWE IT TO OUR CHILDREN TO BE HAPPY AND DELIGHT IN THEM.  Our children need us to have joy in them and their accomplishments, they need us to take pride in the fact that they are our children. Comparing them to the child they aren't is cruel and hurtful.

My kids need to know that I am excited that they learned a new skill. It doesn't matter if other children mastered it at 8 months my kid mastered it now and I could not be more proud. They need to see me smiling over their interests (even if it is watching the same Youtube video for the 123,753 time). 

I'm not saying it's easy and I find myself sinking into grief but I know it's my responsibility to be happy. I do that through medication, self care and a spirit of being grateful. Self care isn't easy but it's a huge part of care for our children.

I came to the realization that even if nothing ever changes, even if my girls never talk again, never use the potty or never learn another skill I will be completely happy with the children I was lucky to have. 

The Day of Acceptance

When Gracie was first diagnosed I thought my world was going to end. I thought it was a life as I knew it would be over and in many ways life as I knew it WAS over. I couldn't comprehend what the next week would look like much less what next year would look like. To me it was bleek and depressing. I saw my sweet baby who had just been given a life sentence of Autism.

The diagnosis was so big it blocked everything out. There is no cure, Youtube was filled with videos of violent meltdowns, co morbid seizure disorders, and adults who made weird noises and couldn't speak.  Previously my knowledge of Autism was limited to Rain Man and PSAs about the early signs of Autism (which my daughter had none until around her 3rd birthday).

It hurt that my sweet baby girl might be different that she might be *GULP* disabled. In some ways it was like grieving a death, the death of the child I thought I would have. The child that I would read Anne of Green Gables to, the child that would watch movies and have slumber parties with her friends. It stung that my daughter struggled to do things that other children had mastered years ago. I fell into a deep depression and gained 80 pounds, as Gracie's Autism progressed I imagined a horrible future full of the things she would never do. I sobbed when she stopped calling me Mommy, and I wondered if I would ever hear her sweet voice again. 

However there came a point when my greif over her Autism was over shadowing my joy of being her mother. There came a point when I decided that the daughter I have is better than the daughter I had hoped for. I realized that I knew my little girl so well that I would not know her any better if she could speak. She expressed her love in her sparkling blue eyes, her smile and she radiates joy in her countenance.

Autism is not what we planned and it's not a journey I would wish on anyone but it is our life. I finally realized that it's not a horrible life, perhaps different challenges than other people face but it was not the nightmare that I had imagined.

I have no idea if things will ever change, for us change is slow and sometimes not at all but even if my life is the same in 10 years that's okay. Where we are isn't so bad.

Please Don't Pity my Autistic Child

You think I don't hear you whispering, I do. You think I don't notice the symptomatic looks and the relief in your eyes that your child is "normal", I see the looks. I smile to myself because little do you know.

Gracie does not need pity. She is the happiest person I know. The sound of running water gives her indescribable joy that I can only dream of.  My daughter has everything in her life catered for her. We have all of our routines and home designed for her comfort.

My daughter is protected by her Autism, because she can't protect herself we protect her. She doesn't have to worry about how peers will treat her because she is never unsupervised, she is never in any situation where she or another person can hurt her.

Gracie my not have the understanding of a typical child her age but she understands she is loved unconditionally. Gracie may not know about the latest toys or media but she does know her own beloved toys. She doesn't dwell on what she doesn't have, instead she loves what she does have.

She will most likely need life long care but Gracie knows that she will be cared for. Gracie wakes up every morning with out a worry of fear she knows that we will wash, dress and feed her then she goes to school where she has a full day of games that teach her.

Someday I want to have the happiness and joy that my daughter enjoys, perhaps Gracie should pity us. 

What to Say When Your Friend's Child is Diagnosed

Since Autism is becoming more diagnosed it's very likely that you will have a close friend or family member announce that their child is diagnosed. Here is a helpful list of a few things to say and to not say.


Things NOT to Say

1. I knew someone who's child was diagnosed as they are fine now.

I hated to hear this because every child and every case of Autism is different. I DON'T know that my children will be okay.  All I know is that right now they have huge stuggles and that their future is uncertain at best. You have no idea if your loved ones child will be able to overcome their Autism.

2. God only gives speical children to speical parents

We aren't speical parents, we are just parents. I don't have special coping skills, more patience, better organization, or some secret strength. We will find a all the things that we need to care for our children, but not because we are speical but because we are parents.

3. I read that vaccines, older fathers, sparkly rainbows, etc causes Autism

The truth is that we don't know what causes Autism, and at the point of diagnosis it doesn't matter. Believe me we already go over every minute of our pregnancies and every parenting choice we ever made trying to find how it's our fault. We don't need to explain to defend it to anyone else.

4. They don't LOOK/ACT Autistic

Autistic people don't look any different and there are different levels of Autism and different kids have different mannerisms. Some might have very little eye contact, others might look away. Some kids can talk and carry on a conversation others might be non verbal.

5. They seem to diagnose everyone with Autism these days

Despite what you may have heard Autism diagnoses are NOT easy to get. Our children often wait for months to be seen by a specialist. Once they are there are often multiple observations and the child must meet a specific criteria of having severe defects in communication, social interaction, and repetitive behaviors. While the symptoms manifest in different ways they must be observed by a specialist.

6. I heard about injections, B12, laser treatment, special mud cures Autism

By the time a treatments hits the mainstream news most of us have heard and looked into the treatment. It isn't news. Believe me your loved one will explore every treatment option. They will talk to doctors, read blogs, and find all the information they can. In the end they will decide what they believe is best for their children.

Things TO say to your loved one

1. I'm so sorry

Sometimes we need acknowledgement that this sucks, it's not fair, and it just sucks. You don't need to go into great detail just some heartfelt sympathy goes a long way.

2. He/She is still the same child

When we first hear the news we are overwhelmed with all the challenges that they do and will face. It's important to hear our child is still the same child from before the diagnosis.

3. I love the laugh, sweet nature, and hugs from your child

We know so well the challenges and difficulties our children face, it's nice to hear about their speical qualities.

4.  Let's go to lunch, the spa, take a walk, etc

So many of our friends disappear when our children are diagnosed. It's like it's a disease that they are afraid their child will catch. Or that somehow that now that we have a special needs child that WE have the plague. Somehow we aren't invited to parties, girls' nights, and lunch anymore. Yes we may spend the whole time talking about our child but we need that shoulder to cry on too.

5. What can I do to best support you

All parents are different with different needs, and it's nice to be asked. Sometimes it's a little babysitting, a meal, a shoulder to cry on.

And Finally

6. Just a really big hug

Our Updates

First I'm so sorry for abandoning my blog for so long. The truth is that I got overwhelmed with our BIG move and the care for my children so I hope to update as much as I can and to move forward with a more regular blog.

First in Feb we started having issues with the class Gracie attends. Her teacher approached me and mentioned that Gracie might have a UTI since she was pulling at the vaginal area and whining. I dismissed the teachers concerns due to the absence of pain ques and that Gracie often whines and pulls at the vaginal area. Well about a day or so later a social worker for CPS showed up at my door with a report Gracie had an untreated UTI.  Thankfully the social worker was kind and professional, and a quick trip to the doctor ruled out any UTI and she closed the case. I was upset at the teacher but decided to move past it.

In March Gracie came home from school with a mystery bruise on her upper inner thigh. I assumed she had been climbing at school and fell. I was not concerned about the bruise. However again the teacher approached me and asked about the bruise. I told her that I had no idea where it came from (remember Gracie is non verbal and has a very high pain tolerance).  Once again a social worker showed up on my doorstep (why do they always come when the house is a mess?). Once again we went to the doctor who did not find the bruise concerning.  However at that point I lost faith in the teacher and I pulled Gracie from school. 

At the end of April we moved to Salt Lake City in our planned move. Both Ray (my husband) and I are from Salt Lake. While we were heartbroken about moving away from half our blended family we felt that we had to move to get the right resources for our children.  Happily both girls adjusted quickly to the move and love their family here in Utah.

In May we got the news that we were expecting. Elizabeth was diganoised with Autism Spectrum Disorder. It was both heartbreaking and relieving to know that Elizabeth is also Autistic. I was heartbroken that I will never have a "typical" parenting experence but I was relieved that we had answers and could move forward with her treatment. 

Elizabeth has also been accepted into the same Autism specific school that Gracie will be attending. I was lucky to get them both in and I am excited at possibilities that exist at that school

Since May we have been enjoying our summer and eagerly awaiting the start of school.

Why We Decided to Medicate

I often hear people talk about how it's horrible to medicate children, mostly it's uneducated opinions like "who would pump their child full of chemicals?" or they talk about pharmaceutical companies pushing drugs for children to make a profit. I confess many moons ago I was one of those uneducated and judgmental parents. I swore I would never do such a thing to my child and that diet and exercise where severely underrated.

Then Autism hit! At first it wasn't too bad and nothing I couldn't handle Gracie would meltdown but I would hold her and after a little while the meltdown would end. Toddler meltdowns weren't so bad and sometimes she could even be confined to her bedroom for the duration. The meltdowns were easy to predict and as long as we stayed on routine she was happy.




But as Gracie got older her meltdowns became more intense. More unpredictable, I never knew what would set her off or how long the meltdown would last. At one point she was melting down for 4 to 6 hours a day, and being sent home from school 2 to 3 days a week for uncontrollable meltdowns.

I began to hate my life, as soon as I got up in the mornings I had dread in the pit of my soul about when she was going to start screaming (the screaming would most often start about 2 to 5 am). My husband and I were on edge and snapping at each other. The most heart breaking thing of as was that Gracie was miserable. My soul ached for her, my sweet little girl who couldn't communicate with me was in agnoy and I didn't know why.

Finally after much soul searching we decided to put her on Rispidal an anti psychotic. We started out with the smallest dose and I was amazed that the nest day we only had two meltdowns. Within a week we were brearly having any meltdowns at all. But most of all I got my little girl back. Gracie is once again her happy, giggly, stimmy self.

Open Letter to a Mama of a Newly Diagnosed Child

Dear Mama,

First I just want to give you huge hugs. I know no matter how much you anticipated this it's still a punch in the gut to her the words that your child is on the Autism Spectrum. Take a deep breath and let someone else take notes as the doctor talks.

First I want to tell you that it's okay to grieve, it's okay to mourn for the lost dreams, it's okay to rage at the universe that your child is facing huge challenges that you can't imagine right now.  It's okay to be depressed at the loss of your typical family. Please let your loved ones hold you tight, even as they say the wrong words please hear the love behind the words.

Remember that your child is the exact same child they were before those horrible words were uttered. Your child still loves bubbles, you and the family dog. That hasn't changed, the only thing that has changed is the label. Now you know why your child behaves the way they've already been behaving.

You are overwhelmed and that's understandable. There are so many options, bio med, conventional, ABA, floortime. Take a deep breath, you don't have to decide this moment. Your initiation will guide you, and you aren't married to any choice. If bio med speaks to you, and it doesn't work you can stop. If ABA is your first choice and it's not the right fit for your child you can stop at any time. Finding the right treatment is life changing, but don't let the pressure overwhelm you, it might be trial and error but you will find your way.

Remember the spectrum is wide. While there are some on the low end of the spectrum (my daughter included) there are many people who are independent and living their dreams. Your child is most likely under the age of 3. Please know that our children change so much like other children and that your child who is so behind now might catch up. Non verbal toddlers do learn to speak, and motor skills do come even if they are a little later.

Last please find a support group. Ask your child's teacher or your local hospital. Take care of your mental health, we are need to stay healthy both physically and emotionally so we can care for our little angels. I run an online support group and if you want to vent with people who understand please let me know and I will give you the details.

Signed with lots of support and hugs.

A Mama who understands.

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.

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.