Love Her Dad!

I love how kind and sweet my husband is with my daughter!  I don't think she could have played this duet with anyone other than my husband.

It's Summer--the joys and pitfalls of it all!

I love summer!  I hate summer!

I love summer because we can go to bedtime late, have plenty of free play time, and just enjoy swimming and playing.

I hate summer because we have no schedules, and I have a hard time finding ways to meet Emily's needs.

Last summer, we did home school with the boys.  We learned about Australia, read Bible stories together, and worked on story maps of Robert Munsch books.  When I thought about doing that this summer, I just remember the tremendous amount of work that went into creating the curriculum.  In some ways, I felt like I was putting Emily's needs in front of the boys.  It is always a balancing act when you have kids that need you more than others!

This summer, I thought I would try and sign her up for camps.  She didn't do that last summer, but has done camps in the past.  I was super excited, and thought I did my due diligence in explaining her autism.  However, it turned out to be a disaster.  I didn't prepare them for Emily, nor did I prepare Emily for the camp.  It was too chaotic, too much for her.  I failed.  It was hard on me, the parent.

She has two more camps this summer, and I want at least one of these to work, for her to be successful at the camp.  (Does that mean that I'm successful too?)  I hope that I can begin a dialogue with them about Emily--what works what doesn't.  Even discuss if this is the right type of class for her.  Take the failure--which Emily doesn't care about--and turn it into a success--which Emily does care about.

We will see how I do.  It is so hard for me to communicate, to talk to others about Emily, to fight for her without being confrontational.  I want to be completely honest, yet I'm often blinded to her faults because I am her mother.  I want everyone to know that she is so much more than her outbursts, her sensory overloads, her lack of social skills.  She is amazing!  She has so many talents that are often hidden behind the mask of autism.

I want to jump up and say she is amazing, you just don't know.  But what does Emily want, what does Emily need?  Am I doing these things to help her "be normal"? Am I doing these things to somehow fulfill a need of my own? As I ask myself these and this very important question, "Will this really help her?" And then, honestly answer  I believe they will, then I need to do a better job of preparing Emily and those who care for her this summer to make it successful.   Wish me luck!  I'm going to need it.

Finding a Cure for Austism

I often feel torn about "finding the cure".  For one thing, I love my daughter.  I love her for her quirks, the way she looks at the world.  I love her musical talents and her imagination.  I love how she has made me a better person.  Why would I want a cure for something that makes her who she is, and makes me who I am? Then there are other times, times when she comes home from school: sad because she wants to play on the playground with other children, but doesn't really know how.  I ache for her when she doesn't want to go to school because it is "too hard".  Why should school be a place that is too hard for a six and seven year old?   I ache for her because school was never hard for me, school was easy.  School was a place where I excelled!   I ache for her when she thinks she is "bad" because she has a harder time making good choices.  I ache for her when she has anxieties about taking a bath.  Then I'm like, yes I want a cure!!!! Please let's find a magic pill that will help her!!!  And of course, not just for her but for the others who have bad days, who go through a school day screaming and yelling.  Where is the reset button so they can have joy?

I have always loved social stories, and they have been very powerful for Emily.  The first book I bought, The New Social Story Book, by Carol Gray.  It taught me to say things like, "Sometimes we finish things now, and sometimes we finish things later."  It also has different scenarios: how to act at a birthday party.  It also comes with a CD so you can write and personalize social stories to your child. When she was in kindergarten, I would read the different scenarios while she was just playing.  It seemed to soothe her and prepare her for next day.  I also gave the book to the school, and the special ed teacher wrote some great stories personalized for Emily.  She seemed to be doing well, and social stories could be given to her verbally as well as visually.  This past year, she has been dealing with anxiety.  She has been really afraid to take baths. School has been a major source of anxiety. So about 1 pm on Sunday afternoon,  she went into full meltdown mode realizing she would go to school the next day after two weeks of vacation.  Well I bought a new story book for her, just in the nick of time.  We opened up the book and started to act out all of the scenarios.  We spent about two hours going through all the pictures and acting out the stories.  Even her older brothers helped!  You could see the anxiety slipping away.  She started to realize she had some tools to help her at school.  When we were finished it was time for her bath.  This is usually a screaming mess.  "Mom the water is getting too high!" is often heard throughout the house.  But this time she said, "Mom please don't drown me."  I assured her I wouldn't drown her.  Then at the end of the bath, she said, "Mom, thank you for not drowning me."  Any time Emily, any time.  So for now, we have found a "magic pill".  Well at least something that will give her some tools that help her.  I highly recommend The Social Skills Picture Book, by Jed Baker.  I love that she can just look through the book on her own and gain confidence and skills to help her cope in our crazy unorganized world.

 So for now, we will plod along, enjoying our delightful Emily, and trying to find little "magic pills" that will help her!

Mommy of God

1. 1. I am a child of God,
   And he has sent me here,
   Has given me an earthly home
   With parents kind and dear.
2. 
   2. I am a child of God,
   And so my needs are great;
   Help me to understand his words
   Before it grows too late.
3. 
   3. I am a child of God.
   Rich blessings are in store;
   If I but learn to do his will,
   I'll live with him once more.
4. 
   4. I am a child of God.
   His promises are sure;
   Celestial glory shall be mine
   If I can but endure.

Chorus
Lead me, guide me, walk beside me,
Help me find the way.
Teach me all that I must do
To live with him someday.

This is a popular children's song in The Church of Jesus Christ of Latter-day Saints.  I love this song because it has taught Emily that she is a child of God.  When I tuck her in at night, I can often feel how much Heavenly Father loves her.  This feeling of love helps ease my anxiety about school starting in five days! 

I often tell her, "Emily you are a child of God, and He loves you very much."   When I do this, I feel that love so strongly.  On a few occasions she says, "Mommy, you're not a child of God, you're a Mommy of God."  Now logically, I realize it's her way of shaping her world.  I'm a mom, not a child, therefore I can't be a child of God, I must be a mommy of God.  But when she says it, I take the meaning literally, I am a Mommy of God.  Somehow I will be given the patience, love, courage, knowledge, and resilience it takes to raise her and my two boys.  So thank you Emily and your words.  I hope to live up the the title you gave me: Mommy of God.  

It's so much easier to have those fail mom moments....

My youngest child, my little girl, was diagnosed with autism eighteen months ago.  Although heart breaking, it wasn't unexpected as we have gone through different assessments with her.  When your child has autism is so much easier fail as a mother.  At least for me!

So I hope you join me on this journey of the joys and challenges of being Emily's mom.

Hi, I'm Emily's Mom!