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.