Education Soap Box

Soap box.

This is where our American exceptionalism causes blind spots in the vision of our country. Finland is just one of many countries that are doing education better than us. And they did this turn around powerfully and quickly. We are fools if we don't look at what other countries are doing successfully and see what we can learn and implement in our country. There are examples of some schools in the US that are doing things like this and showing positive changes.

We are failing our children and our country with our currently accepted educational model. Educated children make educated adults who then make educated decisions as law makers and leaders. We need this. Our reliance on military might and our immense economy to define us as a world leader is floundering. Our ability to force others to see and treat us as "special" is crumbling.

I wonder why we now see this phenomenon of our children hating school. Some like to call them entitled and spoiled and in some instances I am sure that is true. It's human nature for some people to be that way. The bigger problem I see is that the educational system does not treat them as dynamic, evolving humans. There are amazing teachers who do and they are the people who are saving the children from a system that is set up to dehumanize them, even if that is not the plan, that is what happening. These children know it could be better and they are fighting for that by controlling the only thing they can control, themselves and their minds. They check out and refuse to participate.

One of the things I have learned from my son is to follow his lead. He knows what works for him. How do I know this? Because he succeeds when I let him show me what he needs. This does not mean that he gets to do whatever he wants. I say no to him more than any other person on this planet. What it means is that I trust his inherent intelligence. All children have this inherent intelligence, that's what playing helps to grow. We need to use their intelligence for them/with them to have successful educated children.

Facebook Video

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.

Blog Name Change

Hello all!

You may have noticed a name change in my blog. I'm glad you have found us even with the name change. I have a number of reasons why I did this but the biggest and truest reason is that life has changed, and I have grown. My love for my sons has grown and how I express that love out loud has changed and expanded. And the new title of the blog now mirrors that.

Crystal baby - is my sweet survivor, Nolan. He's 5 now and in his final year of preschool. He is my crystal child. He is one of many children coming in who need a different world so that they can grow, develop and thrive. He is my driving force of change; in my life, in his life and in the world. Change is never easy and he challenges me to embody the change I wish to see in the world. He is the reason I am "Be the change you wish to see in the world." - Ghandi.  I have danced back and forth on embracing this - Back because of fear that it was too big and too small and because before 2010 I never wanted to do this...  And forth because it was mine to do because of love, what I know to be right and because I am uniquely qualified to do it. (As we all are uniquely qualified to succeed in our own lives) I was resisting the change. I am done resisting. Let's do this.

Star baby - is my sweet little man, Eli. Star baby is my best way to describe him. He was symbolized by Angel baby in the previous blog title which is a common title in the baby loss community. It's used to let others know that this baby is a baby who has died in utero or shortly after birth. I have used angel baby with conflicting feelings. It just never seemed to fit what I felt. Star baby always felt right and true. Images of the sky, stars, galaxies and universes was just a better match to Eli's energy.  The work I do in the TTTS Support Team non-profit is just a small expression of my continuing love for my son.

Me - is me. This one has been hard too. My life is not quiet, nor slow but it can be repetitive and overwhelming. I have always embraced self love and self care AND I watched me slowly go under with the demands of my life over the past couple of years. I remember my flight attendant days where I would advise 100+ people up to 5 times a day to secure their oxygen mask first and then assist their child or the person next to them. I would have people ask why and I would explain that if they don't help themselves they cannot help anyone else.... Yes, I used to teach people this.... And yet... It was never my intention to ignore or disregard myself, I believe I deserve love and care.. It was exhaustion and overwhelm that stopped it and now I have further to go to get back to where I was and more forward.  I am hoping that since I have stopped fighting what is I will have much more energy to live in what is, happily.

So here we are Crystal Baby - Star Baby and Me living in peace with reality and ready for change!

Thank you Byron Katie.

New Things!

I watched Nolan write out his first name, when requested. He held the pen correctly, he spelled his name correctly, wrote the letters clearly and did it all by himself. The interesting thing is that he wrote each letter on top of the other. I LOVE how is mind works and how he sees things! I would post a picture but I wasn't able to get one. He was signing him name as present at one of his therapy appointments.

On top of that.... I got a "I muv mommy" today spontaneous and unprompted. Calling me mommy or mama is something else new.

Oh. My. Goodness!

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.

The Boy's Third Birthday

It’s my boys’ third birthday today and it’s time for me to write my letter to both of them and let them know just how amazing they both are and what I have learned from them this year.

Nolan – my sweet amazing survivor. This past year the word autism came into our vocabulary. At first I was advised that you were “at risk for autism” and through a number of appointments, evaluations, questions that was changed to a full diagnosis of autism in May. One of the hardest things for me in this process was to talk about what you could not or did not do. That was the absolute opposite of how I choose to see our lives, your life. I choose to live life in the terms of what you can do, what you have overcome and just how accomplished, bright and sparkly you are.  And - being the mother I also know that the world, as it is now, needs that diagnosis so that I can get the extra support, guidance and love you deserve to help you to become the amazing person you already are. So I allow the diagnosis but I will never allow it to discount you, your abilities and your light. I have seen you grow in your understanding of the rules of the world as you gain more experience and trust in this place you have landed for this lifetime. I have watched you reach out to your teachers and therapists and have seen their eyes light up with excitement and joy at your continued growth and development. Your smile sets hearts afire, truly it does. I have seen it. I have felt it. You started preschool this year. You started playing on playground equipment. You went down the slide! Your future is unbound, full potential, joy, excitement, growth and success. This I know to be true. I promise you that anyone who knows you or knows of you will also know that this path that you are on has an ending that is beyond anything we can imagine. I love you my beautiful boy.

Birthday morning before school.

Eli – my shining star. First I must say that I know you are close to us. I know that you hear and see Nolan when he looks at your picture and says “E”, or when he sings “Eli, Eli, Eli” for no apparent reason. I know you are the reason and you are very apparent to me. In February John left this earth unexpectedly too. I know that you were there to meet him after he transitioned. The two of you are connected in my heart. Please tell him I love him and give him a hug from Nolan and I. It has been the through the wisdom that I have gained in being your mother that I have the understanding to offer support to my clients who are looking for connection with their loved ones who have transitioned. It is the depths of my grief over your death that has opened me up and allowed me to support others in the depths of their grief. I have seen your hello’s to me in the Eli skies; the sunlight streaming through the clouds in lines of light, numerous times this past year. I finally received the Molly Bear I requested in your honor. He is beautiful and brings a smile to my face. Also, finally, I put together and ordered your memory book from Shutterfly. I smiled and cried as I created it. I smiled and cried when I opened it. I smile and cry when I remember you. I love you my sweet son. I miss you. I know that I will see you again and until then I promise to continue to care for your brother to the best of my ability and to use the love I have for you to help and love others. Happy birthday my Eli.

Nolan kissing our Eli Bear. He has just started doing this recently.

Two and a half years

It is a strange thing. Getting older has never really bothered me so my birthdays never really bothered me, until recently, and it is not because I am getting older.
My birthday is one day off from the exact 1/2 year of Eli's death. It is strange how certain days take on different meanings as time goes on. Nolan and Eli were born on September 4th. Eli died on September 15th. My birthday is March 14th. I have noticed that the time around my birthday is almost as emotional at September 15th is.
I think it is a combination of things. My birthday indicates another step in time that I am taking away from my baby boy. Another progression in life that I am taking that he is not here to take too. And I just miss him. I have been feeling my grief for the past couple of weeks; bursting out in tears at something on the tv, crying myself to sleep, being distracted and disorganized. I think Nolan felt it too tonight. He was clingy at bed time wanting extra cuddle time before sleep.

My birthday was quiet yesterday. I did homework. Nolan and I went to target and to the chiropractor. She did some great work on me, helping me with the facet joint that still hurts sometimes from the car accident. She did some great cranial work on Nolan. And then Nolan and I had dinner with my mom at Carrabba's. (I love their calamari!) I had my pj's on by 8:30p and was happy about it. I was hurting from the chiropractic adjustment. It's also been a month since my friend John died. I was missing him too.

Today I had an appointment with an RN, Peggy, from ALTCS (Arizona Long Term Care Services) so that she could evaluate Nolan for ABA services through Department of Developmental Disabilities. I always dread these things. I so desire to speak of Nolan in positive terms, talking about all the growth and development I see him do daily. It is almost physically difficult for me to talk about his delays or limitations. But that is what I did, what I had to do, so that he could be considered for services. Peggy was kind and seemed to be rooting for us. She asked me about his medical history and of course I talked about the pregnancy, TTTS, the laser surgery, PROM, premature birth, the NICU and Eli. This, very possibly, could have been the first time in my life that I did not cry as I spoke of our challenges and how one of my little boys died. Because she was an RN, she was interested in some of the medical explanations for TTTS and I was happy to educate. She looked at me and said "This has been a hellish 2 1/2 years for you, hasn't it." I nodded and once again did not cry. That is when I usually do, when someone makes a kind, sympathetic comment, but not this time. I wasn't holding it back. After 2 1/2 years I am stronger in talking about it. At least sometimes. It seems as though Nolan's capabilities/challenges put him right on the edge for approval of these services. She said she may call me back for some clarification if he scores close or I would just get a letter. If he doesn't get approved right now Peggy also said to reapply at his 3rd birthday. Se we wait.

I see the subtle changes and growth in my little boy every day like how he has gotten to the point of grabbing on to the railing with one had while holding my hand as he walks down stairs. This is such a huge improvement from when going down stairs would overwhelm him so he would just try to dive down head first. These are exciting and wonderful things for my little boy. I am so proud of him. He amazes me EVERY SINGLE DAY.

And finally for my birthday I had my mom look at my solar return (astrology) chart to see what this year had in store. We talked for awhile but the thing I remember the most was her comment "No more mister nice guy." This is my year to stand up and take chances to make big changes.

So while I make those big changes I am going to celebrate those small changes too.

I miss you my sweet Eli.
I miss you, my friend John.

Picture of John feeding Nolan. 

See me? See me?

My son, my amazing son......

I came home from seeing clients today and I saw that smile Nolan smiles only when he sees me walk in the door. Then he ran up to me looking at me directly in the eye, craning his head to make sure he makes eye contact with me and that I see him looking at me. It's like he is saying "See me! See me mom!"And then he does it another 4 or 5 times. Just to make sure that we connect.

And then - to make the night spectacular - we sang "head, shoulders, knees and toes" and young man Nolan pointed to his head. He pointed to his head. Let me say that again - he pointed to his head!!!!!

Last week Nolan and I saw our chiropractor. He took really well to the adjustments. I did too, thank goodness! And - his most recent NAET treatment was an extension to his treatment of yeast allergies, to include candida. Lisa, NAET practitioner, said she had never had to treat a toddler for candida. Imagine how hard is body has been working to fight it. And now that it is healed, I am so excited to think about just how much energy he will have to learn, grow and develop.

This mama is happy.  :0)

Finally I want to add a cute video about asperger syndrome. If you are cat lover or love someone on the autism spectrum this will make you smile. All Cats Have Asperger Syndrome.

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

October - Another Awareness Month Close to My Heart

Yes, another awareness month. :)

October is Sensory Processing Disorders (SPD) Awareness month. While there is no official diagnosis in the DSM (Diagnostic and Statistical Manual of Mental Disorders) those who live with it and live with/love those who do face it know it is a real experience that needs special attention and care.

This is Sensory Processing Disorders as I understand them - 

SPD cause the children facing them to respond inappropriately to various stimuli due to the inability to correctly define the information going into the brain. This can cause children to experience pain and fear in response to the most basic of stimuli or not be aware of pain and discomfort and act out wildly to try to get information to their brain and "feel something".

The common course of support is occupational therapy. The therapist works with the child to understand their needs and works with the parent to create a "sensory diet" for the child to help keep them balanced, evenly stimulated and feeling safe.

SPD can sometimes be misdiagnosed as Autism, ADD, ADHD. From what I have read, children with those diagnoses can often have SPD and SPD can be a stand alone experience. Medication does not help SPD, only care, attention and hard work on the part of the therapist, the parents and the child.

I am learning about SPD because my amazing son, Nolan, has been getting therapy for it for the past 3 months.

For more information on Sensory Processing Disorders please visit.

http://www.spdfoundation.net/about-sensory-processing-disorder.html

Sensory Disorders, Autism Evaluation and "I am right. You are wrong."

Yesterday was an interesting day. I want to talk about it but before I do, here is some back story. For those of you who have been following my blog you noticed that I only posted once in July and then not at all in August. There were some things going on with Nolan that I needed to get a grasp on before I would talk about it.

In June I took Nolan to his pediatrician to talk about the fact that he was not talking, at all, not even mama or no! At this point he was almost 21 months, 18 adjusted (due to his premature birth). By all standards he was behind in speech. At that point I had also noticed that sitting still and reading a book was almost impossible and he had started to spin when he would get stressed out. He did not always respond to his name and would not look at people he did not know in the eyes. The doctor referred us to Early Intervention and after SIX different evaluations by eight different people I was advised that he was significantly delayed in speech with moderate cognitive delays. Now I know that many of the people evaluating him did not see the him the way I see him because he was stressed out with them in his home, but to say that I was heart broken would be an understatement. I know his intelligence. I see it daily.

Fast forward a couple of months and Nolan is now getting weekly therapy appointments with a speech and occupational therapist and it has been discussed that he has some sensory processing disorders, mixed to be exact. He seeks visual and tactile sensory input AND he can get overwhelmed and over sensitized by the input he seeks.  So it is a constant balancing act to keep him stimulated and protect him from getting over stimulated. That is what the occupational therapist helps me to understand. She helps me to find him appropriate and satisfying sensory play. Here is the web site on it if you would like more info on sensory processing disorders http://www.sinetwork.org/index.html. The speech therapist helps him create/build his communication skills. I also started with the alternative therapy NAET, which I will talk more about later but here is the website if you want more info http://naet.com/Patients/patientshome.aspx.

And finally Nolan is scheduled next Friday with his first appointment with a developmental pediatrician for Autism evaluation. Which I will talk more about, again, at another time.

So I was cruising the internet at 2am yesterday morning because I could not sleep. Nolan was awake and I had a bitch of a migraine. I was looking up info on Autism and twins, ID or fraternal.  I thought I found a study that said identical twins are diagnosed with Autism more often then fraternal twins or singletons. And I asked if anyone else on one of the TTTS facebook pages I am on had ever heard of this. It started a long discussion about Autism, which happens almost anytime it is mentioned since there are many different people who believe there are many different causes, including that it is not a real diagnosis. Anyway, I got into a disagreement with another TTTS mom and in the end I could not find the link of the study I thought I had seen. I got snappy with her and ended up feeling let down with myself. She expressed that she needed to believe that Autism was genetic because that made it less scary to other TTTS parents. I learned that I needed to believe that Autism was due, at least partially, to environmental causes because then I felt like I had some control over it. I well know that it is our attachment to being right, or thinking we have control can lead us to great pain in our lives. And I know that I am very attached to this, right now at least.

What hit me after much of the discussion had ended was that I was feeling out of control. That there was one more thing to deal with that I did not choose to happen, especially not to one of my sons. I was fighting to believe that there was something I could do to change or alter the possibility of an Autism diagnosis for my beautiful Super Hero Nolan and that caused me to fight with someone else over something as silly as what causes Autism. Don't get me wrong, the effects and challenges of the symptoms of Autism are not silly but to fight with someone about why it occurs or even what it is, THAT is silly. But we were both attached to what we needed to believe to keep us feeling safe and empowered. I got sucked into the game.

Just when I think I have healed from many of the recent things in my life, something else happens and it takes me back to the beginning of my pregnancy. There has been little breathing room, little pause, little quiet and very little adjustment time between. And then when I get attached to an outcome, when I need to be right, like with the Autism discussion, I get angry, frustrated, scared, unhappy and rude. I am continually being given the opportunity to detach in the most intimate and important parts of my life, my and my son's health and well being. I am working on it Universe. I am working on it. I understand that am being pushed to remember that my power DOES NOT come from fighting with someone about their beliefs or perceptions but it comes from my willingness to take what I am given and create something new. That is my true spiritual strength. And - dear Universe, if you would be willing to give me some moments of calm in between, it would be beautiful.

I will end this post with a moment of calm I found between Tobey, the family cat, and Nolan.

I feel very lucky to have caught this image.

PS - This is a rewrite of the "Random Events Overload" post. I deleted that post after realizing that it wasn't really saying what I really wanted to say. :)