Light it up BLUE

Today is Autism Awareness day... so LIGHT it up BLUE.  

I failed.

I forgot, in the rush of getting kids out the door I didn't put any Blue on.  I didn't post on Facebook or Instagram.  

Being me, I have been thinking about why I forgot.  We have a child with a diagnosis of Autism Spectrum Disorder.  How can I just forget?  CP Awareness Day..  Another fail.  We just are not a family that is great about fundraising and selling our story to raise awareness.  The reason...  I think is guilt.

I feel so personally responsible for my children.  

When Julianne experiences a meltdown or can't handle a family meal I feel like a failure.  She still struggles with the bathroom and knowing which shoe goes on which foot.  It must have been something that I did or did not do as a parent.  Words from unknowing adults like "she just needs more discipline, or she would be fine if she were an only child" ring in my ears.  It makes shredding the cloak of parental guilt arduous.  

Our experience with Claudia is different but similar.  I find myself thinking if only I had been a little older before I had the girls.  Maybe if I had quit working sooner, or had not been working so hard.  Then the here and now gets you too.  Our house is not accessible enough, she doesn't have enough therapy, her school is not good enough, we don't have her involved in enough extracurricular activities..and on and on.  

Having two kids with significant special needs is a huge blow.  No matter what cute nuance you tell yourself to get by.. the reality is this.  As a parent with children who have special needs you are faced with extra doctor appointments, uncovered medical expenses, hours on the phone being a medical case manager, IFSP meetings that turn into IEP meetings, daily personal care, daily medical management, advocating for your children's legal rights, and just plain trying to keep it all together to have some semblance of a family.  Is it always fun?   ..absolutely not.

So excuse me, when some days I don't feel like celebrating or spreading awareness because I'm just hanging on.

 

Being Authentic

Assignment:

 to study and write about a famous person.  

It could be anyone from Annie Oakley to Coco Chanel to Barack Obama, or even a famous foreign character like Marie Antoinette or Michelangelo.  All were fair game.

I encouraged the girls to pick an artist or more recent athlete.  

They each had their own plan and idea about who they wanted to be... so allow me to introduce you 

to Coretta Scott King...

and Harriet Tubman..

Both very brave and courageous in frightening and unjust circumstances!  Good choices for both of them.  One of the best lessons from fifth grade, be authentic and pursue what you believe! 

Twin Beds

We have the sweetest neighbors living across the street.  They are two young ladies who have lived through a set of husbands, several jobs, multiple pets and several states.  Recently we were visiting their house and peeked into the bedroom.  I saw the sweetest twin beds covered in sunny yellow bedspreads.  These two ladies happen to be twin sisters and in their older years have found the comfort in living once again together.  It warms my heart to see these two living in such harmony!  

Who knows if my kids will ever choose to live together but I do hope that they can find comfort in each other for many years to come.

Lessons

Vincent played his first soccer season this fall.  The kid has some great skills and a love for the game.  Beyond defending and passing the ball forward, he learned some huge lessons about sportsmanship this season.  It was not easy (for him or his parents) but it is fun to see a work in process be moving in the right direction.

Circus

Our church group planned an outing to the circus!  The kids were interested so we headed to downtown Phoenix in the warm temps (115+).  We were envisioning trained lions, acrobats, and some clowns.  The circus certainly has come a long way!
The US Airways arena was full of excited fans and the show did not disappoint.

From where we sat, far away from our able-bodied church group, in the "wheelchair accessible" area I could not help but long for a different arrangement.
I feel like I should bite my tongue while I type this.. because I know we have come a long way but if I don't mention this will it ever change?
Would we accept a different arrangement where we grouped together all the people who were say over-weight or tall?  In addition it is extremely difficult to get tickets for a family in a wheelchair accessible area because it is for wheelchairs.  Guess what if you are sitting by Julianne and Vincent they are going to eat your popcorn and cotton candy.  I won't be able to do anything about it because I'll be in the wheelchair area.  Just saying it doesn't work.

It makes my head spin.. makes me want to quit bothering to swim against the tide.  Makes me want to board up the doors and stay home.. or join a circus and fly out of a cannon!

Speaking of flying, try that with a power chair!  You have to disassemble your chair and remove anything that you don't want to be pulled off or broken off and then transfer into a seat on the plane.  Claudia's power wheelchair has been damaged to the point of needing repair on 75% of the flights that she has taken!

I really don't want to complain because we can manage this.  We can currently handle driving the 30 minutes each way to get the wheelchair examined and then again to get it repaired... but I know there are others struggling more than we are and why?  Because we allow people with disabilities to be treated differently.

Not to worry we are not giving up.  The kids had a great time at the circus and thank you to the friend that sat by us.  I do hope that some day we have planes that will accommodate wheelchairs, and Claudia can attend a circus with her seven grandchildren all beside her!

Misunderstood

Julianne has such a strength and spunk, not to be confused with stubbornness or hyperactivity! 

 She is independent and silly.

She sees the world from her own point of view.

She loves horses and would really like to take riding lessons someday.

She has some fears but conquer them she will!

She loves her brother fiercely.

And slow and steady she is making forward progress in life.

Julianne will no doubt stand tall on her own two feet.  

And as her mother I plan to protect her and her dreams. 

Awe

This time of year I find that I'm bogged down with a to-do list. Writing Christmas cards, cleaning, decorating, purging, packing, attending Christmas concerts, gift wrapping, meeting for two IEP's, carpooling children, and I admit in the middle of my to-do list Vincent requested that I write "Read Stories". He is so right. I need daily reminders to enjoy the amazing children who fill my home.

For me there is no better way to celebrate with children than to do a project together. I love to watch their excitement as they see, touch, smell, and discover how to put something together. They learn what happens with the switch of a mixer, the crack of an egg, the drop of a color into icing. It's all new and exciting.

My house will not be spotless, my Christmas cards are not perfect, we will drop sprinkles on the floor, and I will enjoy what we are today!

More twin lessons

Yeah! Eloise lost another tooth.

But I do have to admit that she was driving me a little nuts with this loose tooth. We went through the squeaky phase which sounds a lot like dry snow being crushed with ski boots. We went through the front part being free so she could flick it in and out of place with her tongue. It was hanging by a thread for a week plus. Every other second we were hit with the "Look at my tooth" so I admit I was getting a little tired of seeing it halfway out, sideways, and dangling in her mouth.

So what is a mom of twins to do?

Pose a little competition.. Claudia has a tooth that honestly has months to go but she is a eager tooth puller unlike Eloise my reluctant puller. Given the idea that maybe Claudia would wiggle her tooth out before Eloise, it was within the next five minutes that Eloise lost her tooth. Convinced that if she spun the tooth it would come out, she turned and turned it until it won't go back and out it came.

Twin lesson

Lesson learned: When one twin needs glasses, take the other one too! Eloise failed her school screening and a month later we have two with their first pairs of glasses.

I get it

Claudia is on a mission to have a helper dog, and I know why.

We received our first rejection letter from Canine Companions for Independence out of Delaware, Ohio.  I was devastated.  Claudia was amazing.. she said that we'll see what they say in Georgia (Canine Assistants), and we will.

Last night we were talking together while I was helping her get ready for bed.  She loves to dream about what she is going to be when she grows up.  Maybe a doctor, a lawyer or a firefighter, she's not quite sure.  I was mentioning to her that perhaps she would be a good psychologist because she is so insightful and perceptive.  She said that her therapy dog could work well helping people too.  Yes, I replied, and that people would be inspired by all of her hard work and perseverance.  She wanted to know what inspire meant!

It's you babe!  You inspire me every day.  

And today was one of those tough days when having a disability just sucks, and I needed inspiration.

We had an average to stinky IEP meeting.  Nothing major, just not usually productive or helpful.  No one commenting on how wonderful and clever you are.. more of the I can't do that, I'm too busy, we don't have that and that would be too much to ask of the school district.  

But the icing on the cake for me was the call that I received an hour later about you being too "sick" to be in school.  No fever, no running nose, no bodily fluids, just that "the life is out of your eyes" and that you were not yourself.  Apparently you ran into too many chairs in your classroom.

Against my better judgement, I took you home today.  Not your choice I know, I heard the cries.  I see your frustration, isolation and struggle.  I get it.  

I know why that dog would be so nice to have by your side.  Someone that doesn't pass judgement on you because you use wheels.   A dog wouldn't underestimate your abilities or say that you couldn't play.  A dog could love you unconditionally and constantly be there for you. Believe me, I get it, I'm on your side.  Love you Claudia.

Claudia meeting Emily and her service dog Stryde

(plus the sisters Molly and Eloise)

Life

We are so fortunate in this life of ours. The summer sunshine and rain has blessed us with so many pretty flowers.

And the kids are all full of life in the summer warmth. Julie loves to run and be chased, and some times tickled.

Claudia had a fantastic three weeks in Decorah, Iowa. The strength and courage she gained will carry on for weeks to come.

Vincent is showing his sensitive side in the American Girl Bistro in Minneapolis. Don't worry he is subjected to ample time reading and playing with trucks too.

Eloise, our future entomologist, holds a Cabbage White Butterfly that recently hatched in her butterfly habitat. Most would be unhappy to find them on their broccoli leaves, but I'll put up with a few holes for her delight.

We truly are blessed and we are enjoying these blessings every single day. Life is too short to do otherwise.

May Days

May reminds me to slow down and appreciate the gifts I have. It was during May that each of my children were able to come home from the hospital. Claudia and Eloise spent a good 7+ weeks in the NICU and Vincent and Julianne just a few days in the hospital. Today, I am a very lucky mommy to be able to hold these four. (sometimes all at the same time)

What gifts we all have!

(Holly came for a visit recently and got lots of snuggles:)

Opportunities

I have been thinking a lot about Claudia's opportunities lately. For some activities she is certainly able to keep up with the other kids. And for some she can do the typical activity but her speed will be much slower. Some are just near impossible to do. Hula hoops broke out on the playground at Claudia's elementary school recently which is one traditional activity that ranks in the near impossible category.

As a parent my first urge is to come up with a creative way for Claudia to hula with a hoop. I would love to be there helping her to stand and move her hips side to side to get that hoop going. Or maybe I should e-mail the teacher and explore ways for Claudia to be more involved with the physical activities on the playground.

But then I walk outside to hear Claudia giggling, and see that Claudia is pulling Eloise around while she skates. They are both loving it!

Who am I to impose?

bumps

I really try not to feel sorry for my little girl. She is smart and cute and has a lot going for her and what benefit is it to her for me to feel pity? But there are days....

When she is trying so hard to climb the steps up from our basement, or trying not to ask me for a tissue when she knows I'm busy, or days when she falls.

Every kids falls but when Claudia falls she isn't able to extend her arms fast enough to catch and protect herself. She had a nasty fall this weekend while heading out the back door using her walker. About thirty minutes later with her bloody nose and mouth she was at it again.

She is amazing!