April is Autism Awareness Month

On May 27, 2013, at 2 years and 9 months old, Nolan received a diagnosis of severe autism. He hit 11 out of 12 diagnostic points of autism in his 3 evaluations with the developmental pediatrician over the previous 6 months. He was completely non verbal at the time with limited social interaction outside of those he saw on a daily basis, zero safety awareness, limited environmental awareness, extremely high pain tolerance, global developmental delays, severe sensory challenges, challenged executive functioning and while strong his gross motor functions were highly disorganized. His sensory meltdowns were very scary to him.

He was also affectionate, loved to laugh, be tickled, and kissed. He loved to play in the water and with bubbles. Playing in the sand was ecstatic for him. He had no idea how to and no interest in playing with toys but he LOVED colors, shapes, letters and words. And Baby Einstein??? We lived those DVD's for years...

Nolan has had anywhere from 10-20 hours a therapy a week for over 2 years along with attending developmental preschool for 10 hours a week during the school year for almost 3 years.

Since that day in 2013 I have seen his development explode. He started making his daily rainbows. He talks now and is able to say what he wants, what he likes, what he needs. He tells me he loves me. He calls me mommy, or mama. He says hello and goodbye to people by name. He has mastered his ipad and all the games on it. His love of music is his own and his ipod and blue tooth speaker are his constant companions. He loves airplanes, school buses and cars and is now playing with them. He rocks at puzzles and is reading, writing and learning how to ride a bike.

This is the reality of an autism diagnosis in our family. Some days he might look like any other big 5 year old boy, he's almost 4 ft tall. Other days he might look like a spoiled brat. Other days he might very obviously look like he has autism, however you think that looks.

But every single day he is my Rainbow Maker.
His future is limitless.
His potential, endless.

April is Autism Awareness month.
Be ready to be made aware.

Love and Rainbows,
Nolan, The Rainbow Maker, and his mom.

If you would like to follow my son's experiences in life and autism please join us on his Facebook page. Click here.

Another Birthday

Yes, another birthday, this one is mine though, not the boys. March 14th, 19.....

My birthdays are quiet affairs these days, getting together with family, and LOTS of birthday wishes on social media! I mean, it really was wonderful. I especially love the ones with the images and those with the extra sentiments. I am just a sucker for those things, always have been. I used to be on TOP of getting birthday cards out through snail mail, back in the day... But then I was not a single mom, nor mom at all, nor was I busy with all the big important mom stuff I do.

There were a lot of things I used to do, back in the day that I don't do anymore. Some of them were easy to give up, professional pedicures. They weren't that important. Some of them were hard to give up, fancy coffee drinks. Not something I needed but something that I wanted. And then there are those things that I never in a million years wanted to give up or ever even considered I would give up and yet, here I am... Birthdays do that - help you think of these things....

I started a couple of daily mindful practices the beginning of this year including; reading something inspirational or that I learn from, writing down something I am grateful for and outlining what my daily goals are, based on my son's and my schedule for the day... In this practice some things have happened....

I have completely read two books! One of the things I had given up, though not intentionally,  just due to time limitations, was reading for fun. The books I like to read for fun are usually those that teach me something, so my daily reading mindfulness practice has fit right in. I read two books at 5 minutes a day since January 1st. I have always said that everyone can find 5 minutes in a day to do something they enjoy and it seems like that thought may have been right....

Getting a good night's sleep is also something I gave up. I truly had no idea that I could go on such limited sleep for years and still function.... Though I have to say that the functioning had gone down hill lately as it became just too much. Thankfully we seemed to have turned a corner, at least for now. My son is able to sleep through the night more times than not in a week. I have also began to put a priority on my own bed time and am planning on creating a bed time routine for myself! Oh how wonderfully old of me!

Anyway, I mentioned getting a good night's sleep. Well, "waking up" after only sleeping 2-3 hours for the 10th, 20th plus, night in a row makes it very, very, VERY hard to come up with something to be grateful for, unless it is a nap or coffee in my near future.... While I have always thought of myself as a positive person, it seems as though my positivity had become much easier to experience for my clients, students, friends/family. For myself I focused on what needed to be done next. It's my pragmatic side coming out. My To Do List has subcategories with other To Do Lists attached. I am serious, truly... Working to recreate your own business, help run a non profit, finish up yoga teacher training AND managing my son's 25 hours a week of therapy/school, requires my To Do Lists to have To Do Lists right now... And it has been my new mindfulness practice of writing down even one thing to be grateful for, right now, has kept me present to the beauty of now.

There is more I could write about but I will leave it at this, my little mindfulness practices I have been practicing for two and half months are working.... Those small daily changes I have made in my life are helping to clear my head, organize my thoughts, empower my spirit and strengthen my body.

Everyone has 5 minutes to do something they love every day. I have found it to be true. Now that I have it, I hope I don't let it go. It's good for me.... And it only took until my 48th birthday to see that.

And so it was. Little bits of light. Happy birthday to me!

Here's to always learning in our life -  

even when we think, or especially when we think, we should know better.

Blogging Again.....

I have decided to step back into blogging our story here. I pretty much stopped in 2013. I did so out of fear. I unexpectedly found myself in the middle of an ugly family court situation with police reports, CPS meetings, lawyers, judges and court rooms.  I was terrified for my family and I did what I do and shut down. I stopped talking to only a few who knew what was going on and I worked very hard to process everything and make the best decisions I could for myself and my son.

Two and half years later, I have decided to stop being fearful. I will be updating some things from the past two years, back dated, and then start moving forward from there.

For those of you who have been reading my blog, thank you for sticking around. And welcome to anyone who is starting in new.

Much love ~

25 Events of 2013 - In No Particular Order

    1.       We got Nolan’s official diagnosis in May – severe autism.

    2.       A beautiful friend of mine died unexpectedly in his sleep in February – I miss you John.

    3.       Finally had the finances to do some of the things I had been wanting to do in Eli’s name since he died in 2010. Every single penny and every single moment was worth it. 

    4.       I became a published author again! Thanks Tova!  

    5.       Police, CPS, family court and lawyer’s fees – oh my……

    6.       Nolan started developmental preschool. He is absolutely thriving there.

    7.       Helped support some fellow baby loss moms in connecting with their child on the other side, on their own.

    8.       Started back to college to finish my degree. My sister was my inspiration.

    9.       I have heard my little man’s voice. Nolan finally picked up the first sign. We had been working on it for months and he hasn’t looked back. He’s now up to 5 and starting to sing the alphabet.

   10.    I didn’t get to see my niece and nephews in Tucson as much as I wanted to this year. I miss them.

   11.    Took HUGE steps in healing old wounds, forgiveness of myself and others, reclaiming my power and remembering to trust in the Universe.

   12.    Months and months and months of being up 2-4 hours in the middle of the night with a little boy who doesn't sleep well.

   13.    Amazing moments of cuddling, silliness and love with my little one in those 2-4 hours of middle of the night awakeness.

   14.    Knowing I am stronger than I ever thought I was, and I have always thought I was pretty strong.

   15.    Finally coming to the point of starting to create holiday traditions for my little family. It has been a hard road.

   16.    Understanding that the new year doesn’t move me further away from Eli. He comes with us.

   17.    My little man sat on Santa’s lap!

   18.    The loss of some old friendships.

   19.    The gain of some new friendships.

   20.    Knowing how lucky I am to have my client base, some who have been with me for years now and they always recommend me to others.

   21.    Being acknowledged as a spiritual mentor to a wildly successful, beautiful and spirited young woman.

   22.    Being told yesterday that I do not look anywhere near 45. I feel like the past 4 years have aged me more than any other time in my life. 

   23.    I finished Eli’s picture book and got his beautiful Molly Bear.

   24.    I am honored to continue to be a faculty member at Southwest Institute of Healing Arts.

   25.    Remembering in all of this that I choose what it means. And I know it means I am blessed.

Happy 2013!

Happy 2013 to everyone!

I wish you
Beauty and Truth
Clarity and Kindness
Grace and Strength
Love and Light

The winds of change are already starting up for 2013. Keeping my nose up, turning in to the wind, flying fast and guided by the Light and Love.

I found an amazing new facebook page in support of parents of children with autism. Autism Sparkles. This quote is taken from a blog post by the owner of the page 

"After that day, I decided autism might just be the most scary brilliant thing I’d ever come to know in my life.  There could be so much radiance sparkling just under the surface if you looked closely.  I vowed right then we would not seal our fate because of the lack of expectation others held for him  and I would never again hand him over to the dark side of autism that gave up before it ever got started." 

I knew this page was for me as soon as I saw it.

And finally this

While the storm may very well be "the dark night of our soul" and the most difficult thing we will ever face;

if we open ourselves up

allow ourselves to be torn asunder 

and then get up with the light to move forward again

This storm could be one of the most amazing gifts of our lives.

Love <3

A Month of Small Celebrations - December 31

Small Celebrations

It is the last day of 2012 and the last day of my small celebrations month.  When I started I was really worried that I would not be able to do this. That it would be too hard or I would flake out. But I didn't. Not only that but it was pretty easy. Some days were less exciting than others but that is life isn't it?

Tonight I decided to share something I learned on December 19th. Nolan had his first appointment with a developmental pediatrician at Phoenix Children's Hospital on the 19th. It was at this appointment where I heard the nurse practitioner say those words I did not want to hear. "Nolan is 'at risk' for Autism". I can't say I was surprised or shocked but it would be a lie to say that it didn't hurt my heart. Ever since he started his therapies in June and I started learning about sensory processing disorders I started reading about Autism. 'At risk" for Autism is a common term used for children under three years of age, kind of a pre-diagnosis so that the child can qualify for therapies like ABA (Applied Behavior Analysis) and music therapy through state and federally funded organizations. The recommendation for Nolan is to continue his weekly speech and occupational therapies and add weekly music therapy and 25 hours a week of in home ABA therapy. Yes, 25 hours a week. ABA has been used to support people diagnosed with Autism since the 1960's and has gained wide support in the past 10 years. Early intervention and intensive focus is the key. So now there are more acronyms to learn, more evaluations to schedule and more applications to fill out.

Like I mentioned before, when Amber (the nurse practitioner) first said the Autism word I was hurt. I didn't cry. I don't think I even sighed. It wasn't the first time that it was just me when I was given difficult information. I have practice at that. I close up and wrap myself in protection until I can take the time I need to process. Then I came home and started telling friends and family, still in shock. And then just a couple of nights ago I cried. Not because Nolan was given this diagnosis but because he has worked so hard just to be here, with me, ever since he was conceived. He is so strong and so loving and so full of Light and I REFUSE to allow anything on this physical plane, in this physical world, to ever dim that. I will give Nolan everything possible to support his growth and development, the top of that list is my unconditional love and every ounce of fight I have to clear the way. I am continuing his NAET treatments along with starting Reiki treatments in the next month or two. I don't assume to know how this will go, especially after the past couple of years, but I do know that this beautiful star child of mine will always know that that he is loved and that he can do and be so much more than any diagnosis that might ever be used to define him. He is the light of God, as we all are, and I will work to make sure that he carries that as a knowing that goes far deeper than any human experience he may have. 

My sweet baby boy who draws people to him so that they stop and smile. I have even had some adults who stop the stroller by getting in front of it to smile and try to make eye contact with Nolan. I have seen how some people even seem to be surprised that they are engaging him. There is a joy in this child that is so complete; I will nurture that with all the love I have in my being. I am the Indigo Child who came in to this world clear the way for and to support the Prism Children coming in now. I just didn't know that one of them would be my own son.

So my celebration in this last day of 2012 is that Nolan is my son and I am his mother. Thank you to everyone who came on this month long journey with me.

Christmas Day 2012

New Year's Eve 2012

A Month of Small Celebrations - December 25

Small Celebration

Santa came last night.

Christmas Day - I went to sleep last night asking Eli to give me a sign on Christmas Day, just to say hi and Merry Christmas.  I woke up and took a quick look at Facebook. Someone posted this video, just because. I had this song played at Eli's service.

It was like Eli wished me "Merry Christmas mama, from Somewhere Over the Rainbow."

I didn't get to see all of my family

But

I had a wonderful Christmas with Nolan, my mom, Lucas, Whittney and Aden.

I learned that Nolan isn't that interested in opening presents. Actually didn't really care about it at all except for the golden gift from grandma - an "Alpha Pig" action figure. One of the characters from Nolan's favorite PBS cartoon, Super Why. He was soooo excited he just didn't know what to do with himself. He was clapping and laughing, almost over stimulated.

This is him studying Alpha Pig with he was still in his packaging.

A Month of Small Celebrations - December 24

Small Celebration

Christmas Eve traditions 

- Cuties Clementines

- Miracle on 34th Street, It's a Wonderful Life

- Walking around looking at Christmas lights (next year it's Zoo Lights!)

- Wrapping Christmas Presents

- Going outside, look up at the stars and wishing my Eli a Merry Christmas

- Make sure Nolan goes to bed early enough to not have a meltdown

- Remember that Love really is the most important thing

- Teach that to Nolan

A Month of Small Celebrations - December 23

Small Celebration

The Mormon Tabernacle Choir 

My absolute FAVORITE song of the season is Carol of the Bells. I really like the Trans Siberian Orchestra version but I have to admit that my personal favorite, the one that brings tears to my eyes when I hear it is the  version by the Mormon Tabernacle Choir. The version my mom used to have on vinyl. The one I would put on the turn table and turn it up over and over and over again until I felt delirious joy at the sound of their voices. Yup, that one.

So, in honor of the season I shared my favorite song with Nolan tonight. He listened intently to almost all of it. :)

I am including both versions in this blog. Please listen to both if you haven't before and let me know your personal favorite.

Trans Siberian Orchestra

Or

Mormon Tabernacle Choir
(not exactly the same as my mom's album but close)

And the lyrics

Hark! how the bells
Sweet silver bells
All seem to say,
"Throw cares away."
Christmas is here
Bringing good cheer
To young and old
Meek and the bold

Ding, dong, ding, dong
That is their song
With joyful ring
All caroling
One seems to hear
Words of good cheer
From ev'rywhere
Filling the air

Oh how they pound,
Raising the sound,
O'er hill and dale,
Telling their tale,
Gaily they ring
While people sing
Songs of good cheer
Christmas is here
Merry, merry, merry, merry Christmas
Merry, merry, merry, merry Christmas

On, on they send
On without end
Their joyful tone
To ev'ry home

[Repeat from the beginning]

Ding, dong, ding, dong

A Month of Small Celebrations - December 22

Small Celebration

Finally finishing putting the ornaments on the Christmas tree.  We used our small artificial tree this year. It stands about 4 ft tall. It has been up for almost 2 weeks but I just could not get motivated to decorate it. My heart wasn't in it. So today, I decided to do it anyway and I am glad I did. So pretty. 

And this is a wonderful ornament I got from my SIL this year. My little snowman family. Me in red and my boys in green. One on the earth with me and one with the stars.

A Month of Small Celebrations - December 21

Small Celebration

So first things first, I am celebrating the world did not end. I still have many things to do on this earth.  :)

Second, I received a Christmas card created in remembrance of my Eli in the mail today. Created by the organization ZoeRose.org.  They light the candles on October 15th every year and then send everyone a personalized picture of it. I don't know if this is actually a Christmas card, but that is what I am calling it.

On the  back is this poem ~

The world may never notice 
If a snowdrop doesn't bloom,
Or even pause to wonder 
If the petals fall too soon.
But every life that ever forms, 
Or ever comes to be,
Touches the world in some small way
For all eternity.
The little one we long for
Was swiftly here and gone.
But the love that was then planted
Is a light that still shines on.
And though our arms are empty,
Our hearts know what to do.
Every beating of our hearts
Says that we love you. ~ Unknown

Third, I have started a new job part time outside of the home. Five hours, four days a week. I haven't left the house on a regular basis for this long without Nolan in months. I am celebrating the opportunity to do this work. And I am realizing that young man Nolan misses me when I am gone. When I got home tonight he would not let me out of his sight and we laughed and played and hugged like we couldn't get enough. 

And fourth, I had an attractive, younger man flirt with me today. I was thrilled! And then I realized that I need to get out of the house more often, flash my smile and laugh with people of the male persuasion other than my son!

A Month of Small Miracles - December 20

Small Celebrations

I talked on the phone with one of my brothers today. He has gone through a lot of difficult changes the past couple of years and is looking at some more coming up. He is busy working crazy hours and I am busy being me so we don't talk as much as we would like. J has a great sense of humor and we always laugh when we chat. 

It was good to laugh with him today.

This picture was taken during our "hat" Christmas a couple of years ago. Everyone got a hat for Christmas. J decided to wear his in a slightly different way. :)