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.

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!

A Month of Small Celebrations - December 15

Small Celebration

Nolan is learning how to mind his P's and Q's.

Part of his sensory processing disorder is the need to chew. So, I ordered him something he could chew on. A "P" and "Q".

These items were created to help children like him manage his need to chew and give him something that is safe for him to chew on.

We got them in the mail today. He seems interested in them. Let's see if they work.

A Month of Small Celebrations - December 10

Small Celebrations

This is an easy one.
Melatonin!

I have been on a number of sensory processing disorder support pages in which parents have shared how their sensory child had problems sleeping at night, whether is was falling asleep or staying asleep. Boy, did that resonate with Nolan's experiences recently. The lack of sleep we had both been facing was leading to more difficult days for Nolan with unexpected melt downs. And mornings for me where my body hurt, I was so tired. So I was ready to try something fairly natural that would help Nolan, and then me by default, to sleep at night. Last night was the first time and I must say it worked!!!

Nolan slept all night. :)

And I decided to try the 3mg of melatonin too, just because, and I slept too! A wonderful sleep. I woke up refreshed, relaxed and even energized! I literally felt like a NEW person!

So tonight is another melatonin night in hopes that Nolan and I can continue this pattern of good, healing sleep. 

Yay for sleep!

A Month of Small Celebrations - December 5

Small Celebration

Today was a difficult day for a couple of reasons Woke up with a migraine. Having a heck of a time getting anyone to look at my resume and say "Hey! I need to hire this amazing, talented, wonderful woman!" Sometimes Nolan's upcoming evaluation with the developmental pediatrician weighs on me. I had a sometimes time with that today.

But

Today I also had a follow up appointment with my endocrinologist. I had my thyroid removed in 2011 due to a cancer diagnosis. Then in my year follow up ultra sound they found a small mass in the supposedly empty area where my thyroid used to be. Alarms went off, they talked about full body scans, a dose of radioactive iodine.. Instead we went with wait and see. I had another full blood panel done and went in today to get the results. My blood was tested for thyroglobulin - the classic marker for problems after a thyroid has been removed. Because I have no thyroid my body should not be making any thyroglobulin, So if the number is even measurable it can indicate a problem. The results of the test today? My thyroglobulin levels are so low they cannot even be measured!!!  Wonderful news. Basically a negative for my one year follow up for cancer. They want to do another ultra sound to see if there is anything to see but right now there is celebration going on.  :)

And

Today I got a wonderful Christmas gift in the mail! I joined in a Christmas ornament gift exchange in one of the grief groups I am in. I did this last year and my person never sent me a gift. This year I took part again and the person sending me the gift sent it early! It is two beautiful personalized ornaments. One with both of my sons and one in remembrance of my Eli. I am grateful to my friend Shaina for taking the time and energy to have these wonderful gifts created for me and my sons. 

A Month of Small Celebrations - December 3

Small Celebration

Nolan has a difficult time getting to sleep sometimes. I think it might be related to his sensory issues but I don't know for sure. It is something to talk to the developmental pediatrician about when Nolan has his appointment in a couple of weeks. So today at nap time he was yawning, rubbing his eyes and rolling around on the floor crying so I took him up to bed. He laid down immediately, curled up and closed his eyes. And then for some unknown reason 25 minutes later he was up. I have learned that when this happens I often need to go in to "remind" him that he was going to sleep. So I get him out of the crib and sit down in the rocking chair in his room.  I love these times together. It's just he and I. During the day Nolan is so busy that his hugs last about 2-3 seconds until he is off to do something else, but during these nap times he is happy to sit quietly in my lap. We giggle, sing, play hand/finger games. He likes to take off my glasses and play with my eyelashes. He thinks it's hilarious. That quiet, cuddly time is precious to me and it seems to be to him too because he calmed down and when I laid him back down he was quiet and asleep 10 minutes later. Maybe he just needed some alone time with mommy. Or maybe he knew I needed some alone time with Nolan.

This was taken a couple of months ago but here is a picture of my little boy in his crib "reading" his book. With his sweet little "I just woke up" face.

A Month of Small Celebrations - December 1

December, Christmas, the holidays.

This is my third one without my son Eli to celebrate with Nolan and I. The first Christmas I was numb. Nolan had been home from the NICU for only a month and Eli had only died three months earlier. I was struggling to remember to breathe and still trying to heal from a traumatic pregnancy and birth, an extensive c-section and a stressful grief filled hospital stay. I was caring for a medically fragile child and filled with worry. Sometimes getting out of bed was an accomplishment.

The second Christmas, last year, I was rear ended while sitting at a stop light on December 5th. It was a five car accident and I was hurt. I went to the emergency room that night and then went home. Once again, sometimes getting out of bed was an accomplishment. I lived off of pain killers for months. I couldn't lift Nolan up at all. If it wasn't for the help of my mom I don't know how I would have cared for him. Christmas was tough but once again I was numb to the full experience of not having Eli here with us.

This year I have come to realize that this year is going to be the time for me to fully experience the holiday grief. I have been crying regularly and at unexpected times for the past couple of weeks. I know this grief needs to be expressed and released and I want to do that. I will allow myself to cry as I need to and honor my sadness
And
Within that I need to make sure that I honor the celebrations of the holidays. I love Christmas, always have. I have some amazing memories of Christmas with my family as a child and as an adult. I want to make sure I continue to have those memories for myself and for Nolan
So
I have chosen to make December a month where I make sure I see the small celebration everyday. And today is December 1st.

Small Celebration

This morning I was able to set Nolan's bowl of oatmeal on his tray. I gave him a spoon and with a little help he fed himself. He was so excited to do it he yelled "YAY!" after the first 5-10 times. When I had to step away from his high chair I took his bowl and set it on the table and he threw a fit until I gave it back to him.  This is a big celebration because this is the FIRST time he has ever been able to have a bowl of food on his tray and not play in it.  His sensory issues would interrupt his eating and it would be almost impossible for him to do this. I am so proud of him! And even better than that he was proud of himself.

In closing I wanted to post a picture I created last night. December is TTTS - Twin to Twin Transfusion Syndrome - Awareness month. We need more general OB's to understand the dangers of TTTS for identical multiples pregnancies. We need more mothers pregnant with identical multiples to be knowledgeable about TTTS. We want more twins+ to grow up healthy and together.

Speak strongly, boldly or don't bother.

When I started this blog it was to share my journey through the grief of my pregnancy and the loss of one of my sons. I plan on continuing to do this.
And
Now that I am two years out from the pregnancy and Eli's death life has happened, as it always does, I have faced some other things, thyroid cancer, car accident, having an ovary removed
And
Now I am working to understand the challenges of raising a beautiful and amazing son who has some special needs that may or may not be life long.

This is where my recent writing struggles have come in. I can share, intensely and honestly, my personal experiences, my pain, my challenges, my life and in many cases have done so fearlessly. Now with the events of the past couple of months a fear has set in. For me to write about what has been taking my time, energy and love requires that I start to speak of Nolan's challenges. It is no longer about my pain. It becomes about Nolan's life. If I write honestly about what is going on in our life I could possibly open him up to judgements, bullying, cruelty, misperceptions due to his current challenges. Nothing posted on the internet ever completely disappears. With so many situations of children being cruelly treated by others, children and adults, I have become scared for what I might share and how it will effect Nolan in the future. It is no longer my life I am writing about. It is Nolan's.

EVERY SINGLE TIME I post I struggle with these thoughts. To think I might ever write something that could come back to harm my son haunts me
And
I know, for myself, I need to speak/write honestly and nakedly or it is a waste of my time. Speak strongly, boldly or don't bother. So, as I see it right now, I can choose to trust in the beauty of humanity and the Divine and know that the journey with my son is guided and protected and designed to share and empower others.
Or
I can live in the fear of possible judgments of unknown people that may never occur.

I know myself. I cannot make a choice in fear. That goes against everything I believe and everything I wish to teach my son about living in this human world.

So, I believe you will be seeing more about my and Nolan's experiences with his therapies and possible future diagnoses.
At least that is what I believe right now.

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

Pregnancy and Infant Loss Awareness - 2012

Thank you everyone who contacted me to ask how Nolan's appointment went with the developmental pediatrician. We had some insurance problems and had to re-book for December. I have to admit that part of me is relieved and happy about the change in date. Nolan seems to be making such great strides. Both his speech and occupational therapists comment every week how much he is improving.  So my plan is to continue the work we are doing along with the NAET therapies and by December the doctor may see a very different Nolan. He has changed so much since the original evaluations in June I believe he will continue to between now and December.

Last week his occupational therapist mixed up some corn starch and water and created some wonderful goo for Nolan to play with. He LOVED it. It really satisfied his tactile sensory needs. If you have a child I recommend it. It's some weird stuff. It helps Nolan to engage his senses feeding his need for more information so that after the play he can approach other things giving them his full attention. The things I have learned so far in this process still amaze me. But even more, Nolan amazes me. Every. Single. Day.

Tomorrow is the Wave of Light for Pregnancy and Infant Loss Awareness month. October 15th is the day when we light a candle at 7pm local time to create a continuous wave of light that moves around the world. I put this picture together and posted it on Facebook for the day. I would be honored if you would light a candle on the 15th at 7pm too.

I miss my Eli.

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. :)