Lather, Rinse, Repeat. World Autism Day 2015

Below is a blog post entry from 2012.  Not much has changed - except Jessica no longer has an invisible friend/cat named Anga - instead she loves Invader Zim, Powerpuff Girls, music, dancing (especially doing the nae-nae), and talking about voice actors and cartoonists.  I definitely still love her with all my heart, and embrace her uniqueness (and BOY is she unique!).  Enjoy :-)

A letter to my daughter Jessica, on World Autism Day:
Dear Jessica,

When you were born, I was most excited about your blue eyes. Your father and I both have brown eyes, and everyone told me the color would fade from the sparkly blue to a darker brown. I knew better. I sensed that you would have blue eyes. Having blue eyes meant an awful lot to me back then. Maybe I thought children with blue eyes were treated better, or that because of your eye color things would come easier to you. Whatever ridiculous notion I had about your blueberry eyes, was just that; ridiculous.

Autism strikes no matter what color your eyes are.

Jessica, you have autism. I don’t think I have ever spoken that sentence to you. As a mother, it is hard to speak about labels and disabilities to your child. But know this, you may have autism but autism certainly does not have you. It just makes some things harder for you. Playing with friends, or going to school is hard for you because of autism. Loud noises and transitions are hard for you because of your autism. But autism has also given you so many wonderful traits. You are a talented artist. You would draw all day, every day if you could. You know more about cats than I could ever hope to learn. Because of you, I know that the Turkish Van is a cat that likes to swim. That is one cool thing to know! Thank you for that tidbit. Autism gives you that enormous and creative imagination. You are the most imaginative person I know. You have introduced us to your gang of imaginary cats, headed by Anga. Anga is pretty awesome. She used to work at Subway, and she is British? How cool is that??

This might sound a little odd, but I would like to thank autism for giving me such a wonderful daughter. I couldn’t imagine you any other way. You are a blessing to every life you touch.
Thanks autism, for my blueberry-eyed, creative, magical, loving, and silly Jessica. If you didn’t give me the beautiful parts of Jessica, I would never be able to laugh through the hard days.

Love,
Mommy

How I Do It

As a working Mother of 3 children, two of which have disabilities, people often say, "I don't know how you do it."   My response was always, "I have no idea either, but I do."  Deep down I knew that if I didn't "do it" nobody else would, and when you do not have any other options - a Mom has to do what a Mom has to do.

Part of me thinks I have strategically bitten off more than I can chew career-wise, because if I actually did have down time I would probably just spend it in bed feeling bad for myself.  I keep busy because I have to.  I am a scheduling queen.  Between 3 jobs and 3 kids (4 if you count my husband), my day is packed.  There is no wiggle room or room for error.  And that keeps me sane.

If you are a parent of a child with a disability, you probably hear about self-care all the time.  Well meaning friends and relatives say things like  "I hope you are doing something for you." with a pitying look in their eye. Although sometimes I feel guilty when people tell me to "take care of myself".  I feel this way because when I think of self-care, I think of physical things.  I feel bad because I am not running, or eating better.  But then I refuse to allow myself  to have negative feelings over an idea that is supposed to make me feel good!  I do practice self-care.  When I can afford it, I get my nails done.  I even go to the salon to cover my every greying hair with a nice shade of blonde. 

I recently signed up for Paint Nite as a fundraiser for my sons school.  I have wanted to do one of these events for the past few years, and was very excited when the opportunity arose.  It looked fun, and creative - right up my alley.  I was lucky enough to be able to experience this night with some of the best people I know. 

The night started out great - drinks, and lots of laughs.  But within 45 minutes of arriving, I realized something.  I don't have fun anymore.  I can't seem to will myself to have fun.  It was nice to be out - but as I sat around listening to everyone laugh, drink wine, and tell funny stories - I felt nothing.  This was supposed to be one of those self-care activities, and it didn't feel fun at all.  In fact it made me feel worse because I couldn't participate like everyone else was.  I just wanted to go home.

It dawned on me that I can juggle everything in my life - but the price of being able to do so is steep.  I am not capable of allowing myself to have fun anymore.  Sure, I can achieve spurts of fun here and there.  I can laugh at a good joke, and have a nice lunch or coffee with my friends, but I am not fun.  This realization struck me because I used to be really fun.  I was the first one to arrive, and last one to leave.  Sadly, that is not me anymore.

The idea stuck with me for a few days, and I thought about it a lot.  I tried to analyze the night, and come up with excuses or reasons why I felt the way I did.  But it all made me fell pretty crappy. 

In the end, I decided I am okay sacrificing my fun-ness for my kids.  If being a bore is the way I keep them happy and healthy - it's fine with me.  Motherhood is about giving your all to your children, and my all just happens to be my fun side - and that is okay with me.

Jessica and randomness

I have been prone to posting the random hilarity of Jessica's statements on Facebook lately.  Last night, I posted this gem:

Jessica: "That's it, I want a TV show with Richard Horvitz, Tom Kenney, Jonah Vasquez, Morgan Freeman, Gary Busey, and Nicholas Cage. That is my dream team."

Ok - so seriously.  This happened.  In line at Burger King with no rhyme or reason, she spits out this gem.  She is 11, and can understand that Gary Busey and Nicholas Cage totally belong in the same category, but can't do division. Wait -what??  Although what intrigues me most of her use of "That's it" - like she has been struggling with this whole concept for days.  She reached her boiling point and HAD to share this awesomeness with the world.

And, just in case you don't know - Tom Kenney is the voice and creator of SpongeBob, Richard Horvitz created Invader Zim (her current obsession), and Jonah Vasquez is - well - I don't know.  I am going to have to Google that one.  My guess is that he creates some of the air cartoon that she has discovered on YouTube

I got 7 likes, and a comment from my Dad on that status update. 

He asked:
"would you ever just like to peak inside her head and see what's going on in there?"

Um, yes??!!??  I think if I could get a grip on the inner mechanisms of Jessica's brain I would be astounded and scared all at the same time.

Below are a list of her randomness - love that kid!

 "Could someone make a Kickstarter to make Full House into an Anime?"

Jessica, randomly from the other room: "We don't talk about Middle School in this house!"

The bus comes (for the first time this year), Jess walks outside and yells "YOLO!"

 

                Jessica on day 2 of the new school year with her Invader Zim shirt

 

Lessons Learned

Trauma, Part 1

I have been thinking a lot lately about my role as a parent.  As you know, I have 3 children - ages 17, 10, and 8.  I had my 17 year old in my early 20's, and made a lot of mistakes.  I always knew deep down inside in those early years, I was selfishly finding my way through parenting.  I didn't really have a good role model for motherhood, and it showed.  And although my daughter has a lot of medical issues, she also has overwhelming mental health issues.  I can't help but think that if I was a better mother in those years, that things would be easier for her.
We moved around a lot - 7 apartments in 3 years, and 2 long term hotel stays.  Her father and I  divorced before she was 2 years old.  I feel that this "trauma" has turned what was already a hereditary predisposition for a mental health diagnosis, into a real life disorder.

Fast forward to my role as mother for my youngest children.  Am I a perfect mother?  No.  But I am older, and understand what it is to be a good mother.  I realize that my job as a parent is to love and nurture them - and to keep them out of the way of the trauma that my oldest experienced. 
I look at my little ones, and see how happy and stable they are.  It breaks my heart to think that there could be a moment, a split second in their life that could change them forever.  I work very hard to keep them in the happy bubble of life that they are currently residing in. 


Trauma, Part 2

Parents worry about keeping their children trauma-free, but what happens when the parent experience the trauma?  Who helps a parent through that split second in their life that changes them forever?  Particularly as parents of children with  special healthcare needs - we work to keep our kids happy and safe, but rarely think about our mental health.  We suffer through the small traumas daily.  Sickness, diagnosis, social exclusion - all challenges that parents persevere through.  It is that big trauma we are not prepared for.

Recently, a friend of mine and her husband lost their 6 year old son.  My heart breaks for the pain and unfathomable feelings they experience every hour of every day.  Each minute brings new pain.  A memory or a  milestone that burns their heart. 

Their son passed on a Monday in September.  For working parents, Mondays are a transition that we complain about - back to work or back to school.  Our Mondays will pale in comparison to theirs - FOREVER.  Every Christmas, Thanksgiving, Birthday, or "happy" occasion is marred by the memory that will never be.  This trauma is hell. 

How do you support parents through this breed of pain?  I think that every person is different.  I am learning from this family, that they want to talk about the boy that brightened each life he touched.  And even though I am on the perimeter of their "village", I look to them for strength and realignment of my priorities.  I learn from their Facebook posts about what it means to be parenting through trauma. Whether they know it or not, they are teaching others how to live life. 

Back to my original question - who supports a parent through trauma?  The answer is anyone and everyone who has a heart.  A friend that can make you smile or laugh for 5 minutes.  Your husband, your wife.  A brother or sister.  Your faith.  A stranger.  YOU. 



As I am writing this blog, "Fix It" by Coldplay came on my Pandora music station.  The lyrics match this entry perfectly:

"Fix You"

When you try your best, but you don't succeed
When you get what you want, but not what you need
When you feel so tired, but you can't sleep
Stuck in reverse

And the tears come streaming down your face
When you lose something you can't replace
When you love someone, but it goes to waste
Could it be worse?

Lights will guide you home
And ignite your bones
And I will try to fix you

Jessica and 5th Grade

It has been a while since I have blogged!  I have been extremely busy with work, a fantastic Fellowship opportunity, and of course - my family.

Jessica is in 5th grade.  Jessica is in 5th grade - I have to type it twice because I can hardly believe it.  She has grown and matured so much in the past 2 years.  If you had told me in 3rd grade that she would be where she is today academically and socially, I would have thought you were crazy!  In fact, she has made so much progress academically that IEP goals written in April had to be rewritten in September because she achieved most of them!

For me, the last 2 years have been learning about the environment Jessica learns best in.  Although she needs the safety of a substantially separate classroom, she also thrives during the times she is in the typical 5th grade classroom.  Her aide and special education teacher have done an extraordinary job of finding this balance for Jessica, while giving her the opportunity to be a "regular" kid.  We are blessed to have a team that truly cares for Jessica, and wants the best for her.

Jessica has also really broadened her opportunity for social interactions.  She attends a social skills group once a week, as well as going to our local Youth Center on Saturdays to "hang out".  She has also expressed an interest in joining the Booster Club wrestling team.  Yes, I said wrestling.  We were driving away from school one afternoon, and she saw a sign for wrestling sign ups.  Out of the blue, she told me she wanted to wrestle.  She told me she wanted to do it because "I am strong, and it will be fun!".  SERIOUSLY??  I have been trying to get her involved in sports since she was 4 years old, but have never been successful in my endeavors.  It goes back to what I wrote in the spring - if you are upset because your ASD child is not involved in community activities - don't be.  Once you/they are able to identify preferred activities, it is smooth sailing (well as smooth as having a child with an ASD diagnosis is!).  Autism is all about preferred activities!

 
                        Jessica after getting the much anticipated Pokémon X & Y DS game!

A Break from the Norm

This blog is all about my daughter Jessica, but today I wanted to post about my oldest daughter Amanda.  Enjoy!

Poster Child

For the past decade I have been under the impression that there is such thing as a “perfect” special needs child. You know that perfectly cute, exceedingly happy child that lights up the room when they enter – the “poster child” for their disability? My child most certainly is NOT that child.

Over the years I would meet the parents of these poster children and I would be flooded with emotion – jealousy, sadness and mostly embarrassment. My embarrassment surrounding my imperfectly disabled child stayed with me for a while. I was uncomfortable when others met her; unsure what would come out of her mouth. I was ashamed to bring her to the neurosurgeon, knowing that she would draw on the little models of brains and be disrespectful of him. I felt like I was less of a mother because my child  would never be asked to have her picture plastered on a Children’s Hospital elevator. My daughter was NOT that child.

As if dealing with an imperfectly imperfect child with a whole host of medical issues (hydrocephalus, cerebral palsy, vision issues, seizures, etc.) wasn’t enough my daughter also suffers from mental illness.  For those of you who have not experienced mental illness, it is not pretty.  It is unpredictable, hard to manage, and sometimes ugly.  It can make others not want to be around your child.  It can elicit rude remarks from strangers and family members alike.  Mental illness is not fun. I have worked very hard in my community and my career to rid people of the stigma that surrounds mental illness.  I talk about my daughter’s mental illness freely, in hopes that it will allow other parents feel less burdened by their children’s mental illness.  Even with all this openness, my daughters imperfect imperfectness bothered me.

Recently, I had a revelation: my daughter’s imperfections are what make her who she is, and I’m okay with that. I am okay with my daughter not being the poster child for Hydrocephalus or Depression.  I am okay that doctors don’t immediately think of her when they want to speak about a case.  I am even okay that occasionally other special needs parents feel bad for me because not only does my kid have medical issues – she is also depressed, and moody, and anxious!.

 

Although life can sometimes be extremely difficult, I don’t feel bad for myself.   I am content that my child is different - even in the world of special needs.  I am resilient. She is resilient. I don’t need a poster child.  I am content with my child being who she is.

 

It is difficult for parents of special needs children to live in a world where their children are constantly compared to typical children.  Why do we have to make ourselves feel even worse by comparing our child to other special needs children?  The answer is easy, we don’t.  Love your children for who they are. Relish the differences they have to the typical and special needs world alike. Is this easy? Heck no! Do the best you can, because seriously – do you need one more thing to worry about?  I know I don’t!

Jessica and the Boston Marathon

This past Monday was a day of firsts for many people in Massachusetts.  My family and I attended our first Boston Marathon.  My close friend Christina was running her first Boston Marathon, and she was running on the Children's Hospital team.  Jessica's sister Amanda has a lot of medical issues, so Christina graciously asked if she could run for Amanda.  It was the first time in my life that a friend had ever done something so touching and inspiring for my family.  Running 26.2 miles is HUGE.  And to run for my child?  Christina is the best in my book.

The other "first" that occured that day was not inspiring as the ones I listed above.  As I am sure you all know, Boston had it's first ever terror attack (at least in my lifetime) on Monday.  Bad things happen all the time, but they never happen to us.  The bad things happen to other people, in other cities.

Not this time.

We were cheering for Christina along the 13th mile of the race in a Children's Hospital cheering section.  It was a beautiful spring day.  The kids were playing on the grass outside of a lovely church, and I was lounging in my chair by the street getting ready to witness something I had never seen before.  I thought to myself that this was one of the best days I have had with my family in a long time. 

As the runners started to come by, I was feeling a sense of pride and excitement that I had never experienced before.  Each time a Children's Hospital runner came by in their orange and blue checked singlets, we would scream loudly and bang our cowbells (yes, cowbells).  It was hard not to feel  emotion when a runner came by and their family would hug them and share how proud they were of them.  Those men and women were running for children.  Sick children.  They were running 26.2 miles - putting their bodies through something I could never imagine.  Indredible.

Our original plan was to see Christina pass, and then drive to Boston and see her cross the finish line.  By the time she ended up passing us, we had been in Wellesley for about 3 1/2 hours.  Jessica was getting fidgety, and on the verge of a meltdown.  Amanda was feeling anxious because of the crowd, and Jack was just plain tired.  We decided that we would leave for home, and not go to the finish line.

Once home, we unpacked the car and I took Jack & Jessica over to Christina's to decorate her yard.  We wanted to let her know how proud we were of her.  How thankful we were for her friendship.  We wanted everyone who drove by her house to know that she had done a good thing. 

On the from Christina's to my house, I received a text message from her running partner who was out of state on vacation.  He asked what was going on, because he was getting alerts on his cell phone that there was an explosion at the Marathon.  I immediately turned on the radio, and knew there was something really wrong when a music station was streaming news from a talk radio station.  I listened for about 2 minutes, but once I got the gist of it I turned it off because Jack and Jessica were still in the car.  They didn't need to hear something potentially horrific about an event they just attended.

I was praying the whole way home that it was just an electrical fire or something less provocative.  Once I got home and saw the news footage, I immediately knew it was not an electrical fire.  The sidewalks were red.  Today's colors were blue and yellow.  Not red.

There were a few hours of frantic texting and calling trying to figure out where Christina and her family were.  I have never been through anything like this in my life - and I experienced it 3rd or 4th hand.  I can only imagine how Christina was feeling.  She is such an upbeat, kind, and inspirational person - I didn't want these events to change her. 

Luckily Christina and her family were safe.  You can read her story here.

I have been truly inspired by so many things that happened this week.  The heroism - the raw humanity of people in pain helping other people.  I used to complain a lot about stupid, petty things.  Not anymore. 

It is the little things that happen in your day that change your destiny.  Don't get mad at the next meltdown.  If you need to slow down for a friend, at the risk of not doing your best - do it.  It could just change your life.

And, by the way - I hope you all have a Christina in your life.  Mine is pretty freaking awesome.