Boho Girl

A lot of you precious souls write to me asking how Cedar is doing since I wrote months ago about us receiving a possible diagnosis and our journey within the label/non label-ness of it all. We are so grateful for the love and care from those that have been following our journey as a family. The timing of your love notes is always so divine on those extra energy giving days for us. So many have also reached out because of being on a similar journey. A confirmation how healing being witnessed and understood can be.

This past year we’ve really cocooned with support from family, very patient close friends, his Naturopath and Occupational Therapist. This experience has been such a delicate and beautiful dance of listening to our hearts and our own intuition as parents, listening to Cedar, honoring wisdom from those that have gone before us and yet also surrendering to the not knowing (or needing to know) and finding what feels like home to us through it all.

We were told in the very beginning that a diagnosis of Asperger’s Syndrome was really early to tell and to stay open as he progresses through therapy and lifestyle changes. As we read through our stacks of books on Asperger’s, there were some elements Cedar shared but so many he didn’t. We were fully aware through this process that not any one child fits in any box. Of course this felt so deeply true for us always even before all of this came to surface. So we remained open through our research. After months of therapy and evaluation, we have found that what we are navigating through is Sensory Processing Disorder (SPD). This diagnosis and the wisdom that has come pouring forth from books and therapy and blogs has been such a blessing for us and for him.

I am, we are indeed one of those open, earthy families that believe in Crystal, Rainbow, Sun, Moon Starchild as a way of seeing his spirit and soul but we also surrender to and honor all wisdom that comes our way and it seems in this case, Western’s view on SPD has enlightened us on how to help him and he’s thriving. It helps my family have more compassion and understanding. It will help his teachers know better his special needs. I can only be grateful for this and its another life lesson in letting go of resistance to a label, letting go of judgment from others and surrendering to what my child needs.

As I shared with vulnerability before, we know in our hearts that Cedar is not defined by any one label or diagnosis. He is our Cedar…wholly and fully unique. He’s tender and highly sensitive (like his mama). He hears things we cannot hear (frequencies, wires in walls, etc) and he needs deep pressure/impact to feel things physically. He needs to be reminded that he’s hungry, hot, cold or has to go to the bathroom. He needs forewarning if a loud noise is coming (vacuum, blender, dishwasher) so he can prepare for what it does to his body. He struggles when more than one person is talking in a room, so he self soothes by making noises (hums, clicks or talks loud) to diffuse the sound in his head. If he is not in a centered space, there is a lot of melting down or inability to calm his mind and body. We try our best to honor these needs and not expose him to environments that are uncomfortable for him. We are also learning to be more brave by helping him (and us) practice self awareness in challenging situations where before we just avoided them all together for peace.

Unpredictability is what causes a lot of anxiety for him and to make things predictable, he often tries to control his environment and his imagination is what feels safe to him. He will approach people and say he is another creature and they are another creature and all of a sudden, he is taking them on an adventure. He doesn’t have normal conversations. ; ) He has a wild imagination and those that go along with him and enter into his beautiful world of creatures and magic, not only gain his trust and love but they leave his presence so filled up with other-worldliness. My marmie calls him “the storyteller”…and that he can do (all. day. long.).

What our son is, is deeply connected. Deeply sensitive. Deeply intuitive. This is how we see him…and really, he is such a mirror for us. We too have so many of these needs, his daddy and me. We have learned through this process to honor these needs in each of us.

My husband is so amazing when it comes to information. He’s constantly doing research on how to heal the body from within, especially for children with sensitivities like our Cedar and those on the spectrum. For our own journey through fertility and other things, healing has always been about what we put into our bodies and how it affects our mind, body and spirit. After months of trying so many different diets for Cedar, we have discovered what are triggers for his sensory needs and what nourishes him and helps his body to regulate his senses.

Below I will share what we’ve learned in order to offer some nuggets of help to those that are on a similar path but also to keep those informed that care for our family deeply of where we are today. I realize what works for one child, may not for another. Its all part of exploring our uniqueness!

Here’s our daily gig of healing:

• Occupational therapy once a week. Every other week he joins another boy in the therapy room so they can learn together how to move through social anxieties and fears in a warm, loving, gentle environment. Playing with children can feel so unpredictable to Cedar and what feels safe and predictable is to control his environment by controlling play.  This has made it an emotional experience to connect with other children. This therapy sharing has really helped him be open to other children’s needs and ideas. Its helped him be more brave and open in social situations.
• Gluten Free/Grain Free diet. If he does do grains, only brown rice and quinoa feel good in his body but not in excess…just bits at a time.
• No peanuts
• No bananas
• No dairy with the exception of goats cheese/milk
• No safflower or sunflower oil
• No sunflower seeds
• Cashew nut butter only (he has a reaction from almond, peanut and sunflower butters)
• High doses of Omega 3 oils (five of these & two of these, both in the morning and late afternoon).
• Probiotics (one in morning, one in afternoon) are crucial because we notice that if he is able to digest what goes into his body well, then energy will go towards what he needs for his sensory system rather than energy being used up for his digestion.
• Vitamin D3 (one tablet daily in morning)
• We cook for him with walnut and grapeseed oil. After watching the film Lorenzo’s Oil (true story), my husband did research and discovered the miracle piece to the oil came from walnuts. When we started using these oils for him, we noticed a shift immediately. We start his day with breakfast sauteed heavy in walnut oil (scrambled fresh eggs from our neighbor, organic sausage, potatoes) with some coconut milk yogurt and a wee bit of berries. He needs to start his day with a breakfast mostly of protein with plenty of those oils and that sets him up for a day feeling better in his body.
• He eats nothing processed, no artificial colors, artificial flavors and no sugars. The only sweetener he can tolerate is honey.
• Body movement. Cedar’s occupational therapist describes his sensory needs as a “sensory bank account”. The more you deposit into his account, the better his sensory system can regulate itself. The more that is taken out, the more depleted an unable to regulate he becomes. The best way to fill his account up is with body movement, body impact (deep hugs, deep pressure placed on body, pillow sandwich, running, climbing, pulling, jumping, stretching).
• Music therapy
• We often create dark spaces for him to go to (tents, forts, huge boxes with pillows and blankets inside where he places battery operated candles for low light). This helps him when he is overstimulated and overwhelmed. He’ll read a book or watch a film or play an educational game in these dark spaces until he’s ready to surface.
• Nurturing ourselves: All of this requires a lot of energy and taking time to ourselves (romantic dates, coffee shops, me working on an ecourse, my husband getting massages for his carpel tunnel) helps us be more present for Cedar when we are with him.
• Nature, nature, nature…is his most healing place.  There he can connect in a way where there is no pressure to connect.  Trees, earth, stones, sand and water just get him.

How we communicate these changes we’ve made in our life to Cedar is that we are trying to “help his body feel good”.  What we’ve seen in him as we’ve poured our energy into this journey is that he is so much more in tune with his body.  He is beginning to communicate in words what feels like too much or what he needs.  He will tell his babysitter “my body doesn’t feel good when I eat those” or he will ask if he can leave the room when there are too many people.  He will tell us he needs to be held tightly or he will tell us he doesn’t want to be touched. He is not always able to use his words but many times he does and this is so precious to us.

After spending time communicating with Cedar in a very other worldly way, his Naturopath shared with us that he believes Cedar is a sentient being and these beings that are sent to earth with a message are very sensitive to anything that isn’t pure.

Truly, that is what brought it all together for me. That simple message of purity. Pure…oh how I love that word and really, its been such a guide for us: Pure, simple, clean, clear, whole, organic. Aren’t all of our bodies in need of this, especially when we are in a sensitive space?

us en route to vancouver. someone is a wee excited!

The eve of Good Friday, my boys and I were curled up by the fire and Cedar shared with us that he was ready to get his hair cut. I could hear the readiness in his voice. He has talked about it before only to be followed with a fierce “no!” once he realized a part of him would be gone. We’ve been gentle about it with him. We know that transitions of any kind are especially hard on his spirit. So many times he has referred to his curls as “pets” and made it clear often how much he cherished them. I intuited they offered him safeness (and sameness). Of course I cherished his locks too, as did anyone that spent time with him. Although they were now down to his bum and on their way to dreadlocks and constantly up in buns or ponies. So we understood that he was ready for soft and new, just like I was last year. So harmonious with our honoring the New Life that Easter brings.

We told him that we will revisit it again in the morning to see if it still feels right to him and if it did, we would make an appointment that day.

Morning came and he crawled into my bed. While we were snuggling, he looked in my eyes and whispered…“Hair cut. I’m ready.” My heart both leapt and sunk at once. This was truly the day. The day to let go of those gorgeous untouched baby curls!

A few months ago we stumbled upon a really cool children’s salon called The Hair Loft. Its sits on the top floor of the Kids Market on Granville Island in Vancouver, BC. Inside there are chairs in the shape of cars and trains as cartoon characters (Thomas the Train, Lightening McQueen, Dora the Explorer, etc) and there are televisions inside the walls playing animated films or shows. I called them Saturday morning and they had an opening at 4pm! Off to Vancouver we went for the day…

I was so in awe of his bravery. Cedar is very particular about who he allows to touch him. He is very sensitive to peoples energies and of course to any kind of caress. Especially with his hair. I wondered if when the stylist started working her magic on his hair, if he would melt down and we would turn around and go home but quite the contrary, he was just so determined!

Out of all the cars available to sit in, he chose the one that wasn’t a cartoon character at all but a beautiful vintage convertible. He’s so my boy!! ; )

He asked the stylist if his daddy could brush his hair first. I was proud that rather than push her away or start screaming, he asked for what he needed. This has been a huge shift in our world for him and for us after a few months of occupational therapy and us working with him to take deep breaths and find his words so we know what he needs.

The stylist cut off his curls in one swoop, handed it to me and I put those locks in a special box I found at an antique store years ago near my parents home. My sister said she wanted me to save her a lock and I want one too.

I’m giggling as I am writing all of this about his hair but THAT is how much me and my family have cherished it and Cedar has too. Its just been such a huge part of him and that is why shedding it was such a good practice. For him, for us. It felt like a very similar emotional and spiritual process when I got my dreadlocks and then again when I cut them and combed them out. New life. New Beginnings…

So many mothers have shared with me that they have cried when their child got their first hair cut and watched their baby curls fall to the floor. And goodness I cry just about every day because I am such an emotional being. But I stood back and felt his bravery and stepped into it, for me, for him…and it became such a celebration!

The last few days we’ve been gazing at him. Our boy now truly looks so grown and he feels it too and dare I say its even brought on a bit of sass in his ways. ; )

He said he wanted to look like one of the guys from the band the Beatles (his favorite band) I think the stylist pulled it off with a bit of a modern twist.

Here he is the morning after on Easter. He woke up and immediately put on his boots and sweater to go fetch the eggs the Easter Bunny hid the night before. At the end of the egg trail was a basket full of gifts. We had painted the eggs with natural dye as soon as we got home from Vancouver. It was such a glorious morning…

Yesterday, right before falling asleep in the tree swing while his friend Emily was swinging him he said…

“When I close my eyes, my brain feels like you’re telling me secrets and I’m swimming in it.”

Deep sigh. Every day he says something profound that we revel in. I am really loving venturing into his imagination and world these days. There is always something there that teaches me.

I would love to hear some deep words from some of the little souls in your life, if you remember and are inspired to share.

{you can see where our swing is hung in the background of this photo}

Wanted to share a few recent videos of Cedar, just for fun!

First video was filmed by my husband, in a parking lot of a store in Victoria, BC.  I was inside the shop, so they were alone.  It was the first time Cedar started humming and clicking at once.  Now he makes up all sorts of songs doing this! Its hilarious.

Second video is him strumming in a place on the side of our house we call “Shady Grove”. Another video recorded by my husband when I wasn’t around.

This video is of him having a quiet, meditative moment with his guitar.  I was a bit awed.  It just didn’t seem like a 3 year old to me. Music is his medicine.

{The winner of the Horny Toad GIVEaway will be announced tomorrow!}

Most of my life, especially in my adult life, I have resisted the idea of labels. I felt they placed people in a box and the concept of boxing anyone in didn’t quite resonate or feel good in my bones. Intuitively I knew we were all unique and our experiences were unique and being open to others ideas, experiences meant deeper growth and a life of possibility. I feared the limited-ness and the feeling of being controlled and my free spirit ached for the freedom beyond boundaries.

Yet, even at almost 41 years old, as I continue to seek (and drift) and expand without a desire to associate myself with any one way of being, labels continue to come into my path.  They continue to be my teacher. My vessel of messages my soul needs.  Full of nuggets of wisdom. There is always a process of surrender while trying to sort out my own freedom within these labels and our societies preconceived ideas of them: Celiac, Christian, Infertile, Endometriosis, Dread Head, Empath, Wanderer, Adoptive Parent, Free Spirit, etc. There becomes this dance between intuiting my way through life and surrendering to needing guidance and help, knowing I cannot always do it alone.  I suppose labels happen for a reason. They provide direction when we feel lost.  They provide teaching when we are needing to be a student.  They provide council when we are confused.  They provide an opportunity to go within and find our own true voices in the midst of a choir.

This is what my husband and I are moving through with Cedar. A label. A diagnosis. Our resistance to this label. Our relief upon the awareness of this label. Our confusion. Our clarity. Our “aha…this makes sense”. Our fears. Our projections. A sudden awareness of our expectations of Cedar.  Releasing those expectations. Our surrendering to needing help and guidance. Our tears. Or more like…sobs. Our awakening of being chosen to parent him. Our confidence. Our lack of confidence. Our free spirits so deeply wanting to intuit everything he needs. Our surrendering to the fact that we cannot intuit his needs every moment, especially when we are learning his brain and every cell in his body receives information different than ours.

Asperger’s Syndrome. High functioning Autism. Low Spectrum. Sensory Processing Disorder.

Crystal Child.

Our Cedar.

Suddenly, I felt faced with how to share this with others. What gave me courage is that we are one in billions of parents that are faced with labels for their children and not a lot of people know how to navigate through it all. It can feel isolating and lonely and full of so many fears.  Sometimes our fear of labels can paralyze us from giving our child what they truly need.

We are in the beginning of it all. That first awareness and overwhelm. Trying to live moment by moment and center ourselves and not allow the many opinions that may come our way to divert us from our own intuition and trust as Cedar’s parents . Even the opinions to not label him. Which me, more than anyone, understands so deeply.

But I keep going back to that first moment when I heard the label and how my heart felt relief and a weight lifted and tears poured because I have always known down deep that there was something, something I couldn’t grasp or understand about my precious son. I knew that most times his behavior or sensitivities came from a place that went beyond my empathy or intuition as a mama to a toddler figuring out his way in this world.  There has been completely messy moments for him and me.  Moments where I felt he was judged or I was judged and I have had to be his only advocate in a room.  The idea that I could now help myself and others understand him better, so that Cedar will have room to BE and feel safe being, offered me so much peace.

I know my son cannot be boxed in. I also know that just as I did not allow myself to be controlled or defined by any one label, I, we will raise Cedar to not be defined or controlled by any label. We will also raise him to not attach any shame to any of this as there is no shame in it. Just as I felt there was no shame in my fertility journey and sharing it out loud here on my blog has helped hundreds, if not thousands of women and men not feel alone.

As much as we go down the list of Asperger qualities and nod our head, not all of them apply to him. So we are on a journey. And this journey is all about helping him feel as safe and secure as he can when he is overwhelmed. Being married to a librarian, you better believe we have stacks of books on the subject. But we also put them aside at times, take deep breaths and not allow it to consume us or steer us away from our own intuition and free spirits. Those moments where we just hold space for him and release the need to know all the answers or strategies in that moment and to just surrender to the not knowing and what comes so easily for us, which is loving him with our whole hearts unconditionally.

I have more to share about our process over the last few months and our choice to approach this holistically with a grain free diet, particular vitamins and minerals and tools for sensory overwhelm. We are meeting with an OT this month, have had appointments with a naturopath and phone appointments with a gentle and wise woman sent to me by a dear friend. This woman has become my life line.

In this moment, we are surrendering to the not knowing. Surrendering to the uncertainty of whether or not to embrace this label fully. Surrendering to the relief we feel when we can make sense of why he does what he does. Surrendering to the frustration we feel when we can’t make sense of any of this.

Just surrendering.  Isn’t that just what all parents have to do?

Just wanted to share a moment of our day today. One that was very precious to me in the aftermath of a melty and tender morning for him. I have a post coming that I am working on, navigating through and gathering the courage to put out into the world about our sweet boy and us and our journey to awareness as his parents. Some big stuff happening in our world and it has felt all consuming for a few months but I feel like I am surfacing and able to breathe deep and gain clarity.

I thought I loved big all of my life but I never thought I could love a being as much as I do this being that came into our lives 3.5 years ago. But with big love comes big heartache and then big healing.

More soon. For now, lets just focus on how cute it is that his boots are on the wrong foot and he couldn’t care less. And how he dug my kitty cat knit dread hat out of our hat basket to keep the sun out of his eyes rather than his baseball cap. And that he wanted to wear his friend La La Lemur in his apron pocket just like a kangaroo.