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May22

Feature Story: Camiece Kirsten

Camiece is a beautiful and fierce mama to three little dudes. The third of the bunch was still nestled all snug in her belly when we met for a warm drink early one morning back in November. Though I had heard bits and pieces of her story prior to our interview, nothing had prepared me for the honesty and beauty I would encounter that day.

Camiece

This is my story, but it’s also our family’s story. It’s specifically the story of my second son, Milo.

There’s not even a concrete beginning. Milo was a normal baby. Around 15 months my husband, DJ, and I were aware of the fact that he wasn’t talking yet and wasn’t eating normal solid foods. He would only eat graham crackers, peanut butter crackers and purees. We knew he had some minor delays but weren’t that concerned initially, but we took it seriously enough to start on the path to early interventions. Qualifying for and acquiring services while a child is under the age of three is relatively easy. We started getting speech services at home. Through that, we eventually began occupational therapy for his issues with eating and a few other sensory issues. We had two therapists coming to our house every week and were hopeful that eventually things would get better. The services did seem to be helping, but in March of 2013 our therapists both sat DJ and I down and discussed with us their concerns that Milo’s issues were more substantial than had been initially assessed. He was a bit of puzzle to the two of them, but at the time they were concerned that he might have some sort of neurological delay, like autism, or something on that spectrum. Those words, that conversation was life shattering at the time. That potential diagnosis was never on our radar prior to that conversation.

Camiece2

I was shocked that anyone would even think that Milo could be autistic. He had gained words through speech therapy and was making small strides in other areas. I had a stereotypical image in my mind of an autistic child banging his head against a wall repeatedly, or behaving in other extreme ways. Milo just didn’t match the stereotypical vision of what a child with a substantial neurological delay might look like. Or at least, that’s what I thought at the time.

In a single moment, the way that we looked at our child completely changed. Now I look back and I’m heart broken at my initial response because he was still my little boy. He was the same boy in that moment that he was before that conversation. But it felt like our whole world came crashing down around us because of our own fear and misconstrued perception of Autism at the time. We felt like everything we had ever hoped for him was just gone. The two months following this life-altering conversation was by far the most difficult season of my life up to that point.

Everyday was a struggle because we were looking at our son through a completely different lens. It was really hard on our marriage, because we dealt with this disruption to our lives in very different ways. DJ was far more resistant to the idea of this diagnosis, not necessarily in denial, but he questioned things more than I did. I was much more devastated at the possibility and what it would hold for our life. But at the same time we came together in a new way because we were both in the midst of this really challenging experience.

We spent the next couple of months waiting for a team of all different types of therapists as well as a neuropsychologist to come to our house and conduct all different types of assessments. The waiting was so challenging especially because I was looking at Milo during that season as though he was no longer the kid he was before. I paid close attention to every thing he did that was different than our first son, Embry. It wasn’t at all fair. Embry is pretty much atypical in the opposite direction of the spectrum. He’s an extremely calm child with a laid back temperament. To compare the two of them wasn’t fair to either of them at the time.

Camiece3

After months of waiting, watching and wrestling we were finally able to complete the evaluation. It was conducted over the course of a couple of weeks. We were hoping at that point for an answer so we could just move forward, process through how much life had shifted and come up with a plan. As the evaluation was still being conducted we spent a lot of time with one of our therapists. She sat us down one night to ask us what we were thinking. She instructed us to stop thinking that Milo was anything other than who he was, and that if we continued to see him in a certain way, shaped by whatever stereotype we were holding, that he would become that image. She told us that every single kid that has any kind of atypical neurological symptoms presents in their own unique way. She knew we needed to see him as simply our child once again. Her words were incredibly helpful in preparing us for what we would gather from the assessment.

We sat down with them, and they didn’t have an answer for us. I wasn’t sure if that was a good sign or a bad sign. I didn’t really know what to think or feel in response to that result. They said that they didn’t think that he had Autism but that he was neurologically atypical and they didn’t exactly know what that meant. He was still not considered “normal” in the eyes of a medical or neurological expert, but he wasn’t Autistic. We were informed that we would eventually have to get him re-evaluated a few years down the road. Milo was only 2.5 at the time and kids with Autism typically tend to be about a third of the way behind other children. Such delays are more difficult to measure with younger children.

At 3 years old he ended up loosing services through the state because he no longer qualified for state funded services. He had to be in the bottom 7% to be in the system. I’ve had to be proactive and become his advocate. So even though he didn’t test to be in the bottom 7%, you can still request for your child to be assessed educationally. We had that done and he still didn’t qualify. For education services you have to be in the bottom 15%. My thought is, if we let go of these kids now only to have problems in four years because of lack of services, why wouldn’t we provide services from the beginning? Why stop services for a kid who had access to them since he was 15 months old? So that continues to be an extremely frustrating aspect of this story in our lives. I continue to advocate and sort through what types of private services we can access to support him.

At this point, between Milo’s therapist and our own understanding of our son, we are leaning toward the possibility of him having a sensory processing disorder. Unfortunately, it is not an official diagnosis yet, but Milo’s symptoms match the criteria being compiled for this potential future diagnosis. That is how we are treating him at this point – taking efforts to balance his brain when it comes to sensory experiences. We have a fairly good understanding of the circumstances or situations that will affect him and then it’s about learning how to balance him out in the midst of such experiences.

What has support looked like for the two of you throughout this journey thus far?

We kept this entire story close to chest while we were in the middle of it all. Honestly, our families probably don’t even know all of the details of what we’ve gone through for the past year. I struggle with worrying that other people will fail to see my son for who he is if they hear any kind of term or label associated with him. If I struggled to see him for who he really was and made all sorts of assumptions about what this would mean for his life, then I imagine others would struggle in the same way.

Their preschool has been a really important part of our support. We see that there are cases far more challenging than ours and then we also see that we’re not the only family going through these challenges. I am able to see now that Milo is going to be able to function in this world. There will be a place for him in this world, and it may not be the place that other kids may be, but there will be a place for him. Just being able to walk into a classroom with children who have all different strengths and weaknesses and being able to interact with them has really added to our sense of hopefulness for Milo.

How has this story impacted your imaginings or fantasies of motherhood?

Motherhood has been so different than what I imagined it would be like. I feel like in some ways I had to grieve the picture or the life that I thought I was going to have. I had to grieve the life I thought my child was going to have. And I’ve learned that those imaginings were all an illusion anyway – because I don’t even know who Milo would have been had he not had these kinds of neurological issues. So this kind of experience causes you to examine your ideals, the ideas you set before your children that you probably never should have had to begin with…even though we all do that. I had to come to terms with the realization that my children will truly write their own stories. And you can help them, as their parents, but you can’t be the one who writes it for them.

Have you noticed any theme in this part of your story that connects to the larger story of your life?

I feel like I’ve had a history of taking care of things all on my own. That’s my personality. I probably rely too little on other people. That’s how I’ve always been. This experience has been hard because I feel like it’s just furthered that reality for me. DJ’s been great about trying to meet me in that place, trying to take things off of my shoulders. Otherwise, I think I’d be completely overwhelmed and I still have days of being overwhelmed for sure.

How has this story impacted your spiritual life, your sense of what life is about, or your relationship with God?

That’s really a shifting picture day by day. I don’t think I’ve ever gone to God as much as I have in the face of this struggle. Who else is going to help us face all of this everyday? Whenever anything happens in life where it completely alters the trajectory of your life, I feel like I don’t have any other choice but to say, “Okay God, where are you taking us?” I have no idea what the hell I’m supposed to do with all of this, or where I’m supposed to go with this, or what it means for the future. So I rely on just trying to trust God every single day. Even if I don’t believe it, I try to say it. I continue to just return to communicating with God all that I’m feeling and that I’m trying to trust even though I know God isn’t a magician and can’t take any of this away. Trusting that even if I don’t know what the meaning is, that God is in the midst of Milo’s story and our story. Really, just that God is hearing me in all of this and helping me to realign myself to the story that is rather than getting lost in whatever I thought the story could have or should have been.

The truth is Milo proves all of my fears wrong each and everyday. He is hilarious. I love him so much. After all that we went through, I look at him now and I see so clearly that he is the baby that I had, he is the baby that I birthed, and he will always be that. Whatever he is supposed to be, he will be. I believe that even on his hardest days. This is the story that is meant to be.

Have you been able to be kind to yourself in this process and the ways you’ve had to grow in the midst of this story?

Over time, it’s been easier for me to accept that there is only so much I can do. DJ has probably been the most instrumental in helping to remind me that I’m doing the best I can and that I’m a great mom. The days that I give myself less grace, I find it in DJ and in the moments where my kids climb up to me and give me a hug.

What do you want others to learn from your story?

I wanted to share our story because I want people to know what can happen when we see through the lens of stereotypes or diagnoses. I wanted to put our story out there incase someone else goes through something similar. And I want people to think before they speak, to really listen and pay attention to the stories all around us.

Lastly, we can’t end without asking you what your favorite drink is?

Anything fruity…alcoholic or not.

Camiece4

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1 Comment

  1. Margot

    Camiece,
    Thank you for sharing your story with us. I had no idea but it’s great to hear about your beautiful boy Milo and who he is. You are a wonderful and loving mommy.
    XO,
    Margot

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