Tuesday, July 18, 2017

The Funny Similarities between the Renovation Process and Living with Sensory Processing Disorders...

Raising a child with sensory processing disorder is like spending your entire life renovating a house. Renovating a house is a huge undertaking; it can sometimes be really messy and ugly and occasionally, your work uncovers a rare gem that would never had been discovered if you hadn’t started pulling back the layers of wallpaper in that &@#^ dining room!


Having lived through several renovations in my adult life (all of which were taken on by my husband and not myself) I think I am an excellent source to make this comparison. Renovations begin with the stage I like to call, “the lofty goals time period.” During this time period the renovator looks around, makes a lot of notes and says to him/herself “yeah, I can do this! This will be a piece of cake!” The renovator creates a timeline for the project, presents it to his/her spouse/partner/whatever and says “this will be way better and cheaper than if we hire someone!” The partner is sceptical that this project will turn out the way it is being sold but her loved one’s enthusiasm sways her and in a show of support she says “Ok! Let’s do it!” When our daughter was diagnosed with SPD my husband and I looked at each other and said, “Now that we know what this is we can fix this.” “We’ll get this under control and be on our way to a blissful child raising experience in no time!” Our friends told us “She’s so smart, she’ll only need an IEP for 6 months!” A year later with a new IEP, additional services, glasses, other diagnoses, I can’t help but look back at my naive self and shake my head.


Enter stage two of the renovation or what I like to call the re-evaluating your plan and timeline stage. At this point you have pulled down the wall paper in the dining room only to find there are four more layers and you think…”no one would really notice if I just paint over this right??” This is the stage where you tell your very pregnant wife that the baby’s room might take longer to prepare than you thought and promise that the baby and your mother in law will have a place to sleep before the baby arrives. It is at this time that the non-renovating partner looks around the mess in his/her house and thinks “Why the h--- is this taking so long? It can’t be that complicated?” You begin to consider giving up and just hiring someone to do the job. Is the sense of accomplishment really worth all of this hassle?


This renovation stage involves a lot of research, trips to Home Depot, calling friends and possibly other handymen to help, lots of late nights and an abundance of cursing. In our parallel SPD world, this is the time  that occurs after you have your diagnosis and your child is set up with services. Quickly your providers beginning to notice things and all hope of this processing being a quick detour off the child rearing path you always planned for are shot. The professionals begin to comment on her eye tracking, notice that she doesn’t cross the midline and ponder on the fact that the behavior they witness at home is not what they see in the therapy session. You begin to get frustrated so you buy books and read every page. You join online support groups, searching for help and as a last ditch attempt to put the picture of your child completely together you start seeking alternative therapies. And then one day you find yourself at a very Eastern medicine workshop holding jars of herbs buying into what the nutritionist is saying and you stop and look around and think, never in a million years did I think I would end up here!

Finally comes the home stretch. This is the most satisfying stage of a renovation. (It is also the time in our life that usually coincides with a move to a new home and new projects.) You have done your best, you have asked for help with the aspects of the project you couldn’t do yourself and you are generally pleased with the results. You know that soon there will be another project that will absorb your nights and weekends but for one brief moment you pause and admire your work and pat yourself on the back. For a sensory processing parent that occurs when your child achieves something two months, two weeks, or two days ago he or she couldn’t do. When your therapist looks at you and says he/she can’t get over the progress your child is making and how far she has come. When the warmth of pride and tear inducing joy bubbles up inside of you and you begin to let yourself think that maybe everything will be alright. We have all been there and while we know that more than likely tomorrow or the next day will contain a setback of some level, for one moment we can step back and look at our beautiful child and appreciate the hard work that has been done to help his/her light shine bright.

Tuesday, July 11, 2017

There Might Be Lobsters



One of the best parts of parenthood is imparting your love of great literature onto your children. There is nothing better than watching your children fall in love with a book and beg to hear it again and again until they have the whole thing memorized. It's even better when the book they are currently obsessed with is one you adore too. Enter There Might Be Lobsters by Carolyn Crimi and illustrated by Laurel Molk. It is a story about a fearful dog named Sukie, her continually exasperated but patient owner and Sukie's pet monkey Chunky Monkey. Told through the voice of Sukie, you begin to understand how anxiety works and how amazing it feels when you are forced to overcome that fear and do something that truly scares you. Sophie and I have read this story many times this week and it has been the basis of a lot of great conversations as she conquers one of her own great fears- the swimming pool.

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Tuesday, June 27, 2017

Network Spinal Analysis






A year ago Sophie was only able to have a pixie haircut. She had to have short hair because there were spots all over her head where she was bald. It just wouldn't grow. Then last July the pieces began to fall into place. We uncovered her lactose intolerance and she began to eat. Slowly her body responded to the changes and began to get the nutrients it so desperately needed. Hair began to grow.

November came and she finally had access to OT and PT services that brought balance to her always out of kilter body. She no longer needed to pull her hair in order to relieve her anxiety. The bald spots began to fill in.  We hadn't figured out all of Sophie's pieces yet but the world was becoming a less scary place.

Two months ago, a fellow SPD mom messaged me about the wonders of chiropractic care and nutrition response testing. I found a chiropractic office that did both and we began the next step in our journey to support Sophie.

Today I divided Sophie's whole head of hair in two and gave her pigtails "like Abby Cadaby." She wore a short sleeved shirt with itchy wings and grinned from ear to ear. She has been waiting for years to have those pig tails. I may have shed a tear as I looked at her. All I could think was, "look how far we've come..."

We are now firm believers in Network Spinal Analysis Chiropractic care. It has changed our life for the better. I have decided to spend part of my summer collecting information on and writing about this particular branch of chiropractic medicine. I hope what I post will be helpful to everyone and especially those families who love someone with SPD. We will always have tough days but when I look at how much hair Sophie has grown in one year, I know we are on the right path.

Sunday, June 11, 2017

A PSA from your friendly neighborhood choral music teacher...


Hello there! It’s me! The person you instantaneously tell your music horror stories to the minute you learn that I have a university degree in the subject! Even the adults who work with my children preface every singing activity with “don’t listen to me- I have a horrible voice.” I want you to lean in close and listen very carefully- you don’t!  Gasp! Believe me when I tell you, the ones who are apologizing for their instrument, usually have no reason to do so. Here is where the problem lies. By yourself, you actually have a great voice! The out of tune rendition of “Happy Birthday,” that ends with an apologetic shrug and a frantic glance around the room to make sure no one recorded it; has little to do with the quality of your voice and everything to do with your ear not being trained to match another person’s pitch. Great singers listen to each other; amazing singers listen to everything and use their ears to strengthen the technique they have worked so hard to achieve. There are very few people in this world who couldn’t become great singers with a few vocal lessons and a lot of singing in groups.

But here’s the thing. Singing is like weight. Your children don’t notice you have a flabby belly until you point it out and they don’t realize that you can’t sing like Lady Gaga until you flag your flaws. I am no Indina Menel but I love to sing and do it as often as possible around the house. And guess what, my children could care less! My kids ask my husband and me to sing their favorite songs and then they joyfully join in! So sing! Don’t let any child know you are less than perfect- teach them what a release it is to belt out your favorite songs in the car, while washing dishes or changing diapers. Why is this so important? Well, singing, like exercising, has health benefits. I would quote the stats from any number of peer reviewed music journals but I can hear you over there thinking “well, they have to say that, it’s their job!” so instead, I found an article in a magazine most of us are familiar with- Prevention. It says that singing “helps you to bond with others and make connections,” that it is thought to “improve your heart rate variability or the amount of time between heartbeats” and most importantly “helps curb snoring and may help people with asthma.” If you don’t believe me, check it out! www.prevention.com/health/6-health-benefits-of-singing.


Whatever you do; sing frequently. The more you do it, the better you will get! Don’t wait until karaoke and several adult beverages are involved. It may help your health, it may make your children more confident in their own abilities and it will certainly guarantee that the music educators like me aren’t left singing alone.

Tuesday, May 16, 2017

Mother's Day thoughts...

Part of me wants to have another child. There, I said it. But, I want that child not because I think we can afford it or my marriage can survive another human in our already crazy life but because I want those hospital pictures. It sounds insane but it reminds me that I am still recovering from having a premature baby.

I want to experience consciously leaving my older children behind to go have the baby. I want to kiss them goodbye and tell them that the next time they see me; our family will be one person larger. I want my family to dress my daughter and son up and bring them to the hospital so that we can get that one perfect picture. You know the one I am talking about; the one where the older siblings are sitting in the hospital chair or on my bed- I am not that particular, with their feet sticking out and their new sibling stretched across their laps. That beautiful moment in time captured while we are all still in the hospital.

Those moments were stolen from me because my son was born six weeks early. I left our house frantic in the middle of the night hoping that this was all a surreal nightmare. My son met his sister for the first time at our house, two weeks after his birth. She wasn’t allowed to enter the special care nursery because of her young age and his convenient arrival during the middle of flu season. To be honest, I am not sure I would have wanted her to visit her brother in his clear isolate surrounded by wires, beeps and hustling nurses. I think it would have scared her.

But I have to let that dream go. I have to accept that the sadness I feel is attached to the trauma of giving birth and raising a premature baby. This deep ache is part of the healing process and that we are lucky to have ended up with two healthy children and plenty of pictures of them sitting side by side grinning at the camera with their feet sticking out. I have two legs to sit on and two arms to squeeze with and all of them are filled. It is enough until someone posts that perfect picture and the ache starts all over again. 

Sunday, April 23, 2017

Therapies work and miracles happen!

I have been a little quiet on the blog front recently and that is mainly because I have been hard at work on pieces for a variety of sites. I have also been just enjoying life. Spring break provided us with a week of much needed down time. During this last week the kids have been able to rest and recharge. Sophie system is finally back regulated and we are able to enjoy our lovable, clever and musical child once again. I couldn't be happier. February and March were full of turmoil and we have had to make some agonizing decisions regarding her OT services and dietary needs. Now that we have made our changes, I feel like we are ready to move forward. Apparently, Sophie has been feeling the same way.
Sophie has a moderate gross motor delay. It is exasperated by her sensory disorder. This amazing combination results in a child with a lot of energy who has no idea where her feet when she is excited and an extreme fear of any unknown motor based activity. No swings, no high slides, no bridges, tunnels, carousels, rides and the list could go on and on. Enter PT and OT. (Especially PT). Now my child jumps off steps and will get on a swing (although she will only be on one where her feet touch the ground).  I have begun to stop holding my breath when Sophie moves and am entertaining the idea that she might be able to play on the playground with her friends one day without adult support.

Then, this week, we went to the trampoline park and she did this:


video

Even Isaac says in the video "Deeter, jump!" I may have had to fight back tears. I am sure everyone around me at Sky Zone must have thought I was nuts on Friday but this is a miracle. I was afraid we might never get here. If we go again, she may decide not to jump but now I know she has it in her. Therapies work. She even scraped her knee while jumping, let me put a band-aid on (that Sky Zone provided!) and then went back to having fun. She promptly followed up reaching this milestone with letting me push her on a swing for the first time in her life! 

Did we have set backs this week? Absolutely. On the first day of break she fell while running and obliterated her knee. That was followed by a day of limping, begging to be carried and a day of sobbing when I made her take her band-aid off. But we are better prepared to handle these issues and she has an easier time recovering now. I hope with the change of OT and additional nutritional support our family will gather even more tools to help Sophie on her journey. With hard work and dogged determination, miracles do happen. So if you are a family slogging through your sensory journey, please know that days like this are ahead. Just make sure you have your video camera ready. 

Saturday, March 11, 2017

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.


Sunday, March 5, 2017

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.

Friday, March 3, 2017

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. 

Sunday, February 26, 2017

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.

Saturday, February 25, 2017

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.

Friday, February 24, 2017

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.

Wednesday, February 22, 2017

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. 

I hear you.

During the first week home from the hospital, my daughter, for two nights, refused to sleep laying down. My husband was working so my mother and I took 3 hour shifts holding her in the rocker. She slept and we struggled to stay awake. My mother said the rosary and I surfed the internet. Somewhere in the middle of one of those nights I posted on Facebook. I jokingly begged someone to take a shift of this round the clock vigil. A woman I knew a long time ago, who was struggling with infertility, told me to stop whining. That she would take my situation in a heart beat. Ironically, she now has a child who doesn't sleep and vents her frustrations on Facebook. I refrain from saying anything. But in that moment, I took her comment to heart and never spoke out about our problems again.

See, in the middle of the night that plea to Facebook was a cry for help. Even as a new mother of a week old baby, I knew something was wrong. Every maternal and teacher fiber of my being was screaming, DO SOMETHING!!! THIS IS NOT RIGHT!!! Breastfed babies don't spit up this much, breastfed babies gain weight, children don't cry all of the time! Fast forward three years, my daughter is lactose intolerant, has a sensory diagnosis and an IEP. We have a path and she is thriving. So when I see a plea on Facebook now, I usually message the mother and say trust your gut. If you feel like there is something wrong, push for answers. Even when the doctors say nothing is wrong, keep fighting. Someone will hear you. Someone will help. I will help if I can. I hear you. Sometimes, that is all a person needs.

Tuesday, February 21, 2017

Eating on the edge...

Some people eat when they get stressed. I drink when I am stressed and eat when I am uneasy and can't quite put my finger on what is causing the feeling. For some reason, thousands of calories helps me locate the exact point of origin for that nagging feeling I am experiencing.

I deciphered the basis for my edge today as I was stuffing the last of the cookies in my face. People we know are getting divorced. Multiple couples, who appeared to have solid relationships, are calling it quits. We have danced at their weddings, celebrated their anniversaries and spent many a date night with them sharing dinner. Today we are picking who we get in the divorce. Worst of all, I have found out about all of them via Facebook. Someone has posted a picture and he/she is not wearing a wedding ring. One quick text later and my fear is confirmed. A quick march up to my husband's 3rd floor office and we check another couple off our list of potential double dates or someone to visit with our children.

Everything about this situation makes me feel old and unconnected to people I care about. Most of all, it makes me really sad. We have all been married long enough to be that broken and be that far beyond repair. We are separated by miles and stuff and we don't talk on a daily basis. Eventually, I find out about their milestones on Facebook and that triggers my date with anything resembling a sweet or a snack. In that moment, I wonder, how did we get here? This was never in the plans. What do we do now? I worry about my marriage on a daily basis but the truth is, hubs is stuck with me until the day he dies. I have told him that over and over again. I love him all of the time, like him nearly 100% of the time and most importantly, I refuse to share the kids. I don't share well. But as the couples around us crumble, we have to take a moment to pause, cling to each other a bit tighter and pray that one day we are not the ones sharing our tragedy with the world via a single Facebook picture.

Sunday, February 12, 2017

My mouth hurts! The secret language that exists for verbal SPD kids.

"She kept putting her hands in her mouth all afternoon and I kept telling her to stop." My babysitter said as I rounded the corner into daycare to find my daughter covered in vomit and our day care provider mopping her kitchen floor. "Then she told me her mouth hurt and the next thing I knew she was vomiting. She never told me her stomach was upset!" "Oh," I said as I took the whole scene in. "I thought I told you. That is how she tells you her stomach hurts. " 

My daughter started talking very young and since that time the statement "my mouth hurts" has resulted in a quick dash to grab something for her to get sick in and a great sense of dread for what lies ahead. It use to happen quite frequently but since her system has finally regulated itself and she no longer goes a week without having a bowel movement, we have gone 6 months without hearing those dreaded words. So I had relaxed and forgotten to mention that one piece of information to our new day care provider. And so, on a Thursday afternoon, here I am face to face with a vomit covered sobbing child who doesn't like to get dirty and doesn't like changing her clothes and an annoyed day care provider who now has to spend her evening disinfecting her kitchen. Great.

I have spent her whole life learning how to speak my daughter's language. Her mouth hurts translates to stomach aches, something itching means that she is uncomfortable in a situation and is in sensory overload. Sitting quiet and still means that the room is too loud and she has stepped inward to manage her sensory input, which is protesting. See there is a unique problem when your child is so verbal that she has an adult's vocabulary but cannot find the words to articulate her internal needs. The older she gets the more I am beginning to think it has less to do with locating the correct words and instead is connected with the fact that the descriptions we non- SPD people use do not apply to how it feels in her body. 


So the question is, do you embrace her verbiage or do you correct it to be one that others understand? Lately I’ve been thinking that I may just leave that decision up to her. As her mother, I speak her native tongue and while that seems like a foreign language to me, it is the one she was born with. In order to live and support the life that is most uniquely hers, I must accept how she views and talks about the world. I liken it to traveling abroad. As I prepared to travel to Italy, I took the time to learn Italian. When I arrived, I was by no means fluent but I was able to communicate. Part of this SPD journey has included learning a new language and accepting it as equal to the one I speak. When the time comes, I will let my daughter decide if she wants to learn how to translate her thoughts into the native language of her peers or if she wants to continue to speak in her own way and let in only others that support that decision. In the mean time, I will keep translating for the adults around her. 

Friday, February 10, 2017

Where It All Began...

Sensory processing disorder causes you to doubt your ability to parent. People wonder why you can’t control your child. You share what happens in your house with friends who have the same age kids and they say the same things happen at their own home. You pause for a second and think “Really? And you don’t think anything is wrong?” Then you witness that one time their children explode and you realize they have no idea what you are talking about. The explosion that you just witnessed is what you would consider to be what occurs on a calm day in your house. It is in that moment that you start to feel alone. You begin to doubt yourself. Maybe you aren’t the great parent you thought you were. Maybe, you are doing something wrong…

Then, one day you decide to have a second child and everything is different. Washing up after lunch doesn’t involve kicking and screaming bloody murder. (A daily routine that I am sure makes the neighbors believe that I use acid rather than water to clean my children). Transitions are not as hard and his temper tantrums are laughable. My second child can be stepped over and left on the floor if need be or dropped in time out without breaking a sweat or stopping a conversation.

Somewhere after the birth of the second child (or at least that was when ours arrived) comes the fateful day that every sensory parent talks about; the day you will never forget. The day where you realize beyond a shadow of a doubt that something has to be done. You are faced with the understanding that what you are witnessing is beyond the “spirited child” posts found all over Facebook and instead the life of a child constantly in survival mode. Everything changes on that day. My moment of awakening occurred in the middle of a crowded bathroom at an outdoor museum in front of an audience of 20 pairs of eyes. My daughter was melting down because the bathroom was crowded and the hand dryers were really loud. To make matters worse, the changing table was not in a quiet location and instead in the middle of the bathroom because most people are not still dealing with diapers when their children are 3.   I carried my sobbing daughter out of the bathroom and back into the quieter lobby with the dirty pull up still on. The minute we reached the quiet, she relaxed and within a few minutes was calm again. I’ll never forget when she told my sister “That room was too loud. It hurt me.” As I changed my daughter behind a bush outside of the museum and made my sister, who runs a nature center, promise me to never put loud hand dryers in her bathrooms, I thought, “I need help.” I have over eleven years of elementary teaching experience and I can’t do this on my own.


The thing is, I don’t want to take the sensitivity out of my child. It makes her who she is. Her sensory processing disorder makes her so empathetic to others emotions. It makes her see colors brighter and think outside of the box. It has helped her become one of the most imaginative children I have ever met. I just want her to be able to swing with her peers and go to the bathroom without screaming. I want the world to be not such a scary place. I’d also like to be able to trust my gut instinct again.