Thursday, September 27, 2012

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. :)

Friday, September 21, 2012

It's 1am

It is exactly 1:06am and I am up and looking at pictures of identical twins. Why in the hell would she be doing that, you might be asking... I am not sure I know the answer. Because I miss my identical twin boys. They are not identical now. Why is that important? I don't know. Maybe it's not. Maybe it is just that one of my boys is here with me and one is not. And right now at 1:11am I am feeling it. Not crying though. I am feeling resignation and anger all at the same time. Resignation - it is what it is and there is nothing for me to do to change it. Anger - it is what it is and there is nothing for me to do to change it. One reason, two emotions.

This grief is not for the weak and you cannot know how I wish I could be done with it. I cannot count how many times I have heard "The grief does not end. It changes." and I know that my love for Eli will not end just be transformed, as it already has. Thing is, I am not really feeling all that transformed right now.

As another mother who also lost one of her twins to TTTS just said, "but I've had more good days than bad but there are still days I don't want to get out of bed.." I understand that sentiment. I have lived that sentiment. This process truly is a process that demands the choice to continue getting up and living every single day and sometimes, on bad days, every single hour.  It is a repeated choice. I am blessed to have this choice, and yet, I still wish, sometimes, to not get out of bed and to hide from my life, just for a little bit. Truth is though, that does not work either. It is actually easier to get up, get out, live, laugh and love, love and love some more. But sometimes I still wish.

I am having some of my TTTS friends going through VERY difficult times right now. One beautiful mama had to put herself into a mental health facility to try to support her grieving process. Because grief is ugly but grief that is stuck feels evil to the soul. Another beautiful mama just found out her 3 week old rainbow son has neuroblastoma. What do you say to a mother who lost both of her little girls to TTTS and when she goes on to have her rainbow baby she learns he has cancer? I don't know, so all I have is I love you and I support you in anyway I can.

I would humbly ask that you hold these mama's and their families in your prayers or in love and light or whatever it is that you do to keep hope and strength and courage and love flowing their way.

It is now 1:26a. I believe I am done looking at pictures of identical twins now. It is time for me to sleep. So I will end with the picture of my beautiful little boy. This is his thank you card to everyone who came to his and Eli's 2nd birthday party. It was a great turn out.  :)



Saturday, September 15, 2012

Two Years and Love

The second anniversary of Eli's death. The anniversary of the death of your child is something no parent ever wants to experience. As I was laying in bed this morning I flashed forward to the 20th anniversary of his death and I quickly wondered if I would be crying that morning too after crying myself to sleep the night before....


While I was driving in the car today I heard this song - many times. I kept hitting replay on my ipod.
http://www.youtube.com/watch?v=X1Fqn9du7xo
Adam Lambert - Whataya Want From Me
I know, might seem corny, but just hang with me for a second and keep reading.

From the first moment I heard the song in 2010 it brought tears to my eyes. The lyrics moved me but I couldn't completely understand why, until today. That was when I started to cry - I got it..


Hey, slow it down
Whataya want from me
Whataya want from me
Yeah, I'm afraid
Whataya want from me
Whataya want from me

There might have been a time
When I would give myself away
(Ooh) Once upon a time
I didn't give a damn
But now here we are
So whataya want from me
Whataya want from me

Just don't give up
I'm workin' it out
Please don't give in
I won't let you down
It messed me up, need a second to breathe
Just keep coming around
Hey, whataya want from me
Whataya want from me
Whataya want from me

Yeah, it's plain to see
That baby you're beautiful
And there's nothing wrong with you
It's me, I'm a freak
But thanks for lovin' me
Cause you're doing it perfectly

There might have been a time
When I would let you slip away
I wouldn't even try but I think
You could save my life

Just don't give up
I'm workin' it out
Please don't give in
I won't let you down
It messed me up, need a second to breathe
Just keep coming around
Hey, whataya want from me
Whataya want from me
Whataya want from me

Just don't give up on me
I won't let you down
No, I won't let you down

So
Just don't give up
I'm workin' it out
Please don't give in
I won't let you down
It messed me up, need a second to breathe
Just keep coming around
Hey, whataya want from me

Just don't give up
I'm workin' it out
Please don't give in
I won't let you down
It messed me up, need a second to breathe
Just keep coming around
Hey, whataya want from me
(Whataya want from me)
Whataya want from me
Whataya want from me


This had been my song to my higher self, my soul, my God.
Screaming at the top of my lungs -
What do you want from me????
Begging them not to give up on me as I figured all this out. Since the pregnancy diagnosis in March 2010, I have been smacked up side the head, again and again. Some of them were obvious and beautiful blessings (the pregnancy - twins) and some I had to work REALLY hard to see the blessing (there are still some I haven't shared completely yet). Just as I would catch my breath and balance myself again something else happened. None of them felled me permanently but my knees have been bruised for awhile now....

All of the words are perfect and exactly what I said and pleaded for from above and within -
 - Slow it down
 - Yeah, I am afraid
 - It messed me up, need a second to breathe
 - Just keep coming around (please)
 - WHAT DO YOU WANT FROM ME?!?!?!?!

The answer, I hear now, I understand now. You want me to love, know love, give love, BE LOVE.  All of these things I have experienced since March 2010 have broken down my denials, my illusions, my protective barriers. I have been laid bare and I now understand that the ONLY thing that is real and worthwhile in this human experience is Love.

And so I will listen -
Stop fighting.
I will Love.
Loving takes courage.
Loving is not for the weak.
It demands vulnerability.
It demands surrendering.
It demands being real.

And it is the only option in my life now - to Love.


So, I chose to make this day, September 15th, the first annual Love Out Loud Day. I deliberately chose Eli's angelversary because of all I have learned of love during my pregnancy, the boys birth, Eli's death and every day after that. Love is not the absence of sadness or grief. Love is a choice in the face and experience of absence and grief. Often they go hand in hand. Sadness and grief do not cancel out Love, they just makes us work harder to see it. On September 15, 2010, I loved and had to learn how to care for a premature baby with some special needs and a baby who had died - at the same time. For my own sanity and ability to function I HAD to come from a different place in love. I HAD to go bigger in my understanding of love. So I choose today for Love Out Loud Day. It was the only day that made sense for me.


I am already beginning to kick around plans for next year. I want to plan some community events in support of Love Out Loud Day.  I am still working on the website for it - www.loveoutloudday.com.


All this because two little boys came into my life on a roller coaster experience. One was able to stay with me and one needed to go back home.

Monday, September 3, 2012

Letter To My Boys - Second Birthday

In three hours it will be officially Nolan's 2nd birthday. Five minutes later it will be Eli's 2nd birthday.

I know I haven't written much lately. As I mentioned in my last post there were some changes happening that, to put it plainly, I didn't know what to say. I will talk about those in another post. But I knew that the 2nd birthday of my beautiful little boys and my letters to them was the perfect time to step back into my blog.

So here goes!

To My Amazing Nolan -
What a year it has been. There is no one on this earth who would look at you now and know that you started out fighting TTTS, born 13 weeks early and spent almost 3 months in the hospital with two surgeries under your belt before you were 6 months old. This past year, you moved from standing up with the help of the furniture to running around with excitement and pure joy. You graduated from your need for thickened formula/milk and are now eating like an adult. Well, almost, if you know of any adults who like to rub mashed up banana chunks in their hair or sometimes the random piece of hot dog. I am guessing it is good for your hair because you have beautiful hair.  You are still careful with your words and haven't stepped out to claim any one word as your official first word but boy can you let me know what you want. With the way that you read and study things, sometimes I think you will actually read me a book the first time you talk. :) You have become a fan of the Super Why cartoon on PBS. Even giving a kiss to Pig and Red Riding Hood sometimes when they come on. You have good taste - both are very cute.  :)  You have learned to be friends with Tobey the cat, to Tobey's relief, and understand the term "gentle hands" when you pet him. You love applause and clapping, for anyone, anytime, so filled with joy, smiling a huge smile and clapping away.

You have perfected the art of throwing yourself down on the floor so you have a soft landing during your rare 5-10 second tantrums. And have even been known to laugh at yourself while throwing those tantrums. You have also perfected the art of throwing a ball, actually two balls at once! Your intuitive sense of how electronics work and what buttons do what amazes and maybe even scares me sometimes. And you still shine your light brightly. I see the looks that children and adults give you when they pass by, smiling, waving, little girls coming up to try and kiss you. Oh yeah, that Venus/Mars conjunction in Libra is showing up already! (Astrology talk for charming.)

You got sick for the first time and the second time and the third time this past year but you are so strong that the first time was only for 48hrs and the third time only happened because your immune system was down from the 2nd time.  :0)  You saw a chiropractor and he told me that you had to be one of the strongest little boys he had ever worked on. PS - you charmed him too.

What I have learned from you -
I could spend all day, every day with you and I would still want more. I love that "Nolan's mommy" is one of the hats I wear in my life, one of the most important ones in my life.  Being responsible for you makes me want to do more and do better for you, for us. You have shown me that being present in the moment is one of the best things I can do for both of us. You will always have my heart, even as you grow up, find your own way and make your own life. It is my love for you that has gotten me up and moving every single day this year, with a back injury from an accident and other health issues. There were times before you and your brother when I would hide under the covers to just get away for awhile. I don't do that any more. I get up and make a life for us. Not because I have to but because you have worked so damn hard to be this wonderful child that you are.  You are making it past your challenges and difficulties to be here now, you deserve at least the same from me. You teach me about love every day with every breath, every smile, every tear.
I love you my shining little boy.


To My Amazing Eli -
All I have to do is say your name and I am filled with your presence. This communication and connection between us is natural and real. I love that you ride in the car with me and we talk then. It is that quiet time when I feel close to you. And then just as confirmation you make yourself available to my friends who are open to hearing and feeling you.  People respond to your spirit as strongly as people respond to Nolan.

I know that it is you who is working on the other side to help bring the parents of those children to me. The children who let me know why they do what they do and what their parents need to understand to help them cope and function in this earthly life. And these children see me. Your life and death helped me to step into that part of my work. You also help me in connecting with those who have passed. You are my bridge and I am so thankful.

As I started standing up and speaking to groups again, it was your spirit that came to me. I felt your love and a couple of times simply giggled in joy at the feel of you.  You have helped me, made me Love Out Loud and See Love in all things. I am honored to continue to feel and share your love in my heart with as many as I can.  I will continue acts of service and kindness, large and small, in your name and your memory.

And I still cry tears because this human mama still wishes to see your eyes, hear your laugh, kiss your cheeks and hold you close. I miss you in the physical. It is one of my greatest hopes that I will again get to hold you close to me and know that it is you that I am holding and that you will know me.

Your birthday party is on the 9th. Keep an eye out for those balloons we will be sending to you. They will have notes of love and birthday wishes all over them, from some of those people you have touched. Your name will be on the birthday cake too. Nolan and I will blow out your candle for you. :)

Eli, my star angel. "Some people only dream of angels. I held one in my arms."
"A luminous light remains where a beautiful soul has passed." Thank you for lighting my way through my grief at your departure.

I love you heart and soul.
And PS -
Thank you for entertaining Nolan when he wakes up in the middle of the night. I know, I hear him laughing. :)

To both of my boys -
You continue to do your magic in my life as I knew you would. Just being here, being who and how you are is a gift of love, growth, service, joy, happiness and patience.  I really don't know if things "happen for a reason" or if there is a "great plan" but I know that I will continue to find the perfection of having you both as my sons for the rest of my life. I know I am blessed to have two powerful spiritual beings in my life, as my sons. I am so grateful for you. It is my job as your mother to create places on this earth for your light to shine brightly and I will continue to do that with great love.