Real talk about sensory sickness

Sickness. Let's get real about it. In your average sensory regulated child, it sucks. Cold? Terrible. Stomach bug? The worst. Now put that in a child whose sensory synapses are wired to code red all of the time?? Well, let me tell you, it is a world like no other. It is kine of like living through the apocalypse only to find out that means you are one of the few people left to fight the zombies. I am 100% sure I did not sign up to be that person, yet, here I am now!

How do you know you are living through the post sickness life? Let's consult the checklist...
    1. Has not returned to a normal bathroom cycle?- check!
    2. Is acting like a complete lunatic when she needs to enter a bathroom?- check!
    3. Sees her mother and runs screaming because she knows Mommy is going to make her sit on the potty?- check!!
    4. Has to be wrestled into pjs because he has decided sleeping butt naked in 10 degree weather is better for her than avoiding hypothermia?- check and check!

Living the dream people. Living the dream!

Oh and by the way, if you are the person who so graciously shared your stomach bug with my child, I would like you to sign up for a shift on the sensory train. It only seems fair.

I wish

I wish...

I wish that my daughter's IEP came with a budget for alcohol and chocolate because that would help us out a lot.

I wish that people could be here to witness her meltdowns. That they could watch as she hits me, like she did tonight so people would stop being so shocked that something is wrong.

I wish I had someone with me all the time who could tell me what to do on nights like these because I am at a loss and I don't want them to continue. We have been to a behavior therapist and a GI and no one has helped.

I wish the phrase "Mommy, I need you" didn't strike such dread in my heart.

I wish I was able to spend more time divided evenly between my children so I was assured that Isaac felt he got equal attention.

I wish we had started this whole process when she was 2 so she would have gotten help focused around the home. We would have been given more strategies.

I wish we knew what the food trigger was that causes her to want to poop and not want to poop.

I wish I wasn't so tired.

I wish so many good days didn't end in such disruption.

One step at a time...

When Isaac was in the NICU there was a pivotal day. He had gone several days without "bradys" and the medical team said that once he had gone 7 days without one, he would be cleared to go home. I excitedly said to my baby "you hear that? You might go home early!" Our seasoned nurse heard this conversation and went to the attending on duty.

Now, if you haven't had the lovely opportunity of having a child in the NICU, there is an important fact to understand about all of this. The nurses are not allowed to leave their stations unattended. So my nurse stepped across the aisle to have this hushed conversation. Being a teacher, I am well versed in the behind the hand hallway conversation and instantly knew they were talking about me. A few short minutes later the head neonatal doctor came over to talk to me about Isaac's progress. Long story short; even if he mastered his brady's in 7 days, he had a lot more work to do before exiting the nursery. He was making forward progress but it was going to take the expected length of time.

Today I felt the same way about Sophie's progress. We have been so excited about all of the great things she has been achieving that this set back has been devastating to us. We needed to have someone step across the aisle and let us down easy. To remind us that this is a long journey and even though many things are exciting right now, we need to pace ourselves because this is going to be a long haul. 

Tomorrow will take care of itself.

"Just take one day at a time."

"We'll cross that bridge when we come to it."

"It's a process."

"It will all work out."

All of these sayings are adages that are supposed to make us feel better. Instead, they often end up leaving the receiver of these well meant phrases feeling a little unsettled. See, deep down that person understands that all of these helpful phrases end with the realization that one day you will have to cross that bridge and deal with the problem. Cue the sinking feeling of impending doom and stomach knots. 

Today I was given the solution to the "just take one day at a time" problem. Today, in the middle of a quiet church I was told to not worry about tomorrow. Tomorrow will take care of itself. I tried to hold onto the author's name but of course somewhere in the mix of getting my two children through mass and home, the verse escaped me. I believe it was Matthew. But in the post break world most of us are re-entering tomorrow, I thought it was perfect. "Do not worry about tomorrow. It will take care of itself." Oh the release! I was released from moving forward to quickly. I was released from my to do list today that mainly consisted of preparations for tomorrow. I was released from worrying about what challenges lay ahead. Tomorrow will take care of itself. Just live in today. 

It's amazing the things you can learn when you take a moment, sit in silence and really listen. Enjoy the moment and don't worry, tomorrow will take care of itself.

Six truths I have learned on my sensory processing journey...

The last 10 months have seemed like a sprint at the end of a marathon. You are already exhausted from your extended run but somehow you dig deep so the guy next to you doesn't beat you to the finish line. It has been a long three years of questioning and doctors and suggestions that didn't work and now that we have answers, we feel like we are sprinting to make up for lost time before we potentially lose support in Kindergarten. As we gulp our water and run like our hair is on fire, we have discovered a few truths about sensory processing disorder. I felt like this was a great place to share them.

Truth # 1:

Kids with sensory processing disorder can be very verbal. My daughter scored 40 points above the average child in her age bracket on the verbal tests but is just learning how to communicate things like hunger and bathroom needs. She needs prompting to make eye contact and say hello to peers and adults. She talks constantly (every moment of her waking day) at home but is just beginning to speak in school and new situations. She is much more comfortable when her brother is with her. So having a huge vocabulary or being able to talk the ear off of someone when she is in a comfortable situation is one of her strengths that we are utilizing on this sensory processing journey.

Truth # 2

Many kids with sensory processing disorder are very anxious beings. My daughter does not like to try anything new until she watches someone she trusts do it first. She does not dive head long into a ball pit or run up to new children to play with them. She stands quietly and observes. If I try to push her, she will freak out. But if she does it on her own terms, she will quietly tip toe into a new situation. There are many things she is anxious about including getting her hands dirty, going to the bathroom, new clothes, capris, 3/4 length sleeves and foods that are squishy. The list goes on and on but for the sake of time, I will move on.

Truth # 3

Kids with sensory processing disorder can be very quiet. When she was diagnosed, we were told SPD kids fall usually into two categories- fight or flight. My daughter is a flight risk. So when faced with a sensory problem, she is much more apt to melt into the background and disappear than she is to pitch a fit. Especially in public. Especially when she does not have someone with her who she feels completely comfortable with. She saves her meltdowns for home. If you drove past our house some mornings when it is time to get her dressed (see anxiety over wearing capris), you might get a different view of our world. 

Truth #4

Sensory Processing Disorder can make some children extremely compassionate and caring people. It also makes some kids completely unaware of other people's needs because the internal distraction is just too much. There is just not one version of a child with sensory needs. Even in the same family the sensory needs might be different. Just as with non SPD kids, every child with SPD is different. 

Truth # 5

It takes children with Sensory Processing Disorder longer to bounce back from being sick. If you think about your own personal experience with illness, you will find that it takes a few days to get back on your feet after a stomach bug. Now, imagine your whole body is a raw nerve and any slight change is upsetting. Throw a stomach bug on top of that and you can picture the damage it does. We are two weeks out from a stomach bug and finally beginning to return to our normal. It is a very long journey and we are lucky we are normally healthy. Post sickness aftershock is worse than the original bug.

Truth #6

In my opinion, this is the most important one. Sensory Processing Disorder is something my daughter will have her whole life. Her internal wiring will not magically realign itself to be like child without this disability. The work we are doing now will help her to feel better in her own body and help her manage herself in a loud and unpredictable world. As she grows, her needs will change and we will need to make adjustments. We will teach her new coping skills and give her the support she needs to thrive. At some point, most people will forget that this is something she even has. That is our goal. But, in all honesty, she will always be a child with this disorder and it will shape who she is in amazing and challenging ways.

Triggers

As I sit in front of this keyboard and reflect on the last week of vacation, the thought crosses my mind that I might be one of my daughter's sensory triggers. I've never thought about it before but a series of events have left me with this nagging feeling that it might be true. A meeting I sat in where the people present talked about how far the mother had come and how she used to trigger the behaviors in the child. My return to my house after a morning away triggers an emotional meltdown and a comment from my husband "but she has been fine all day until you got home." A return to constipation and what I affectionately refer to as a kicking potty sessions during our week of vacation. Meltdowns on the mornings I am home and take her to school and most recently an article that says moments of stress can result in constipation in children on the autism spectrum. Excellent. So great. It warms the heart.

It is hard to be the one person your sensory child always needs because it requires you to be their rock. Their calm in the storm. To be honest, I should have handed that job off this week to someone else and run far away. My own stress and worries did not put me in a mindset to settle and be zen like. I currently do not have the strength to breath deeply and speak calmly. So I have been triggering chaos because my child is still recovering from the stomach bug that ended almost two weeks ago and that means she is fighting pooping like it is her mortal enemy.

I guess this is part of the process. Acknowledging that you are a piece of the problem. Now it is time to work on my own coping skills so that I can be a better mother to my beautiful and complicated child. Maybe it begins with learning how to breath deeply.

It takes a village...

Every parent has heard the old adage "It takes a village to raise a child." While I believe that is true, I think the same saying can be applied to parenting. It takes a village to prop up a parent so he/she is able to do right by their child.

Today is a perfect example. Today, was a rough day. The post stomach bug world we are living in right now is harsh. All of the progress we have made around my daughter's bathroom issues has dissipated and I am back spending my days being screamed at and kicked while my child does everything in her power to avoid having a bowel movement. It is 11:30 pm and I just found my sock, which I have been looking for since 4 pm, shoved behind a pack of wipes on the toilet tank in the kids' bathroom. I went out to play with the kids post nap wearing only one sock because I couldn't find it. Needless to say, life is far from Norman Rockwell serene.

But, over the past few years, I have built myself a village. Through out the day that village has appeared and provided the support I needed. A little humor, a little love and a lot of reminders that we are actually good at the most important job in the world. Raising our children. Yes, my son almost fell asleep at the lunch table because I was dealing with his sister. Yes, the only food I got into my daughter today was cheerios, raisins and grapes. (I am also acutely aware that for some of you that would be an amazing eating day). But with everyone's support, we survived and in some moments thrived. My beautiful, complicated child made a basket in her new basketball hoop and played soccer with her brother; two things that would not have occurred just a mere three months ago. Friends shared their stories and reminded us that we are all in this together. My husband and I once again looked at each other across the dinner table and attempted to convince ourselves that we are indeed raising good people. Sometimes, it just takes a village to reassure oneself of that fact.