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?