Tuesday, October 23, 2012

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.
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
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
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.
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.

Thursday, October 18, 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.


Sunday, October 14, 2012

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.