Hard to Take the High Road

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It has been just about 2 months since I wrote my last blog. I’m not sure why that is? I have so much I want to share about my journey as a Special Needs Mom: the good, the bad, and the ugly.

A few weeks ago I came face to face with UGLY. In fact, it was one of the ugliest encounters I have ever had with a human being. Period.  I took my son with me to the bank one afternoon like we have on so many other occasions. It was right around St. Patrick’s Day and my son was playing at a display table with little shamrocks and green garland. Of course I asked the bank teller if it was ok for him to play there, and she said “absolutely”!  He was right behind me playing and keeping to himself while I made a few transactions. He was happy as a clam and making noises while he played. My son has Apraxia which is a very complex speech disorder and my son’s Apraxia is profound. Part of his way of communicating is to make noises/sounds. I call it singing because it is usually when he is happy and content, so I like to think that if he were able to sing in those moments, he would. After a few minutes I heard a voice behind me telling my son to “shut up” and “stop it” in a very mean tone. I turned and very politely asked this older woman not to speak to my child that way and to let him be. “He isn’t hurting anyone” I said!!! She immediately stopped but continued to stare and make me feel uncomfortable.

As we turned to leave the bank (my son still making his beautiful sounds) we walked right past this woman and she gave my son the dirtiest look and said these words: “shut up you RETARD”!! Yes, you are reading that correctly. R-E-T-A-R-D!

I could try to explain to you how furious I was but there really are no words to even come close to describing how I felt. I literally envisioned myself tackling her to the ground and punching her repeatedly but instead I calmly looked at her and said “kindness always trumps evil and I will pray for you” and walked out the door.

Of course as soon as I got to my car and sat down, I began to cry. I was so angry, heartbroken and just felt completely disgusted. WHY would anyone say something like that? HOW could someone say something like that? Doesn’t she see how beautiful my son is? How perfect he is? I wondered who this woman was. Was she a mom? Does she have children of her own? What happened in her life that would place such ugliness in her heart? Then I started to worry about the fact that there are other people out there just like her! People who are cruel. People who think it is completely ok to use the “R’ word and have no remorse about it.

I sat there in the bank parking lot for a good 40 minutes sobbing quietly so my son wouldn’t hear or see me when I happened to look up in my rear view mirror to find him sitting in the back seat smiling and playing with his toy. He had not a care in the world and had no clue what had happened. How amazing is that? Maybe it is because he is a child and he doesn’t understand the ugliness out there in this world. Maybe it is because he is so special that he only see’s the good in the world. Everything in his eyes are beautiful and innocent. I always tell my son that there are mean people out there but for every mean person, there are double the nice people. I always tell him when bad things happen or if someone is mean, to pay attention to the people who are good and helping others.

Taking the high road is not always easy to do especially when we want to protect our children in these types of circumstances. However, we as parents have to be the example. I could have very easily hit that woman in the bank or gave her a piece of my mind and caused a big scene but what would that have done? It probably would have scared my son and I could have gotten myself into a heap of trouble. How would I explain myself to my 7 year-old-son who can’t communicate verbally?

Instead, we left the bank that day holding hands while my son sang in his own way. We sat in the parking lot while he played quietly and happily with that big beautiful smile of his. WHY? Because on that day, I  chose to protect him and chose the high road. Because I didn’t want him to remember this mean person, but remember the nice bank teller who let him play with the shamrocks and the green garland.

 

 

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Dust bunnies and guilt

Let me paint a little picture for you:

I am a stay at home mom. I also work out of the home 12 hours a week as a nurse for end stage dementia patients. As much as I love my job and find it to be a gift to help my patients transition the end of their life in a peaceful and comfortable way, it is also emotionally taxing.

Outside of those 12 hours a week spent at work, I am home with my son. I homeschool him and I am the main caregiver as my husband works A LOT and sometimes he has to travel for long periods of time for his job. We don’t have much help and there are NO breaks in this house. It is non stop from sun up until sun down.

As I mentioned in my previous blog, my son has Apraxia. Apraxia is a Neurologically based motor disorder that effects speech and motor skills. For my son, his speech is severely effected and he has some motor delays along with it. He is also developmentally delayed and we were recently told that he is “developmentally equal” to a 3 year-old (he is 7).  With these diagnoses comes lots of therapeutic interventions. He has speech therapy 4 days a week, occupational therapy 3 days a week, and aqua therapy once a week. We travel for most of these appointments and we pay out of pocket for all of it.

I can’t tell you the last time I had time to myself in my home. And by that I mean time ALONE in my house. Not just time spent hiding in the bathroom with the door locked to save my sanity. Time with just myself. To sit and have a moment to collect my thoughts, enjoy a cup of HOT coffee and just recharge my soul without being called 1000 times or being pulled in a million directions. I am the type of person who needs time alone. It’s not because I don’t love the people around me, it’s just the way I am. I walk 4 miles several days a week which is also something I need to keep myself in check, but being alone in my home for a couple of hours is just so so nice.

My husband is home today and I asked him, ok, begged him to take our son to occupational therapy today. I worked last night and I am working again tonight. I just need some down time. Thankfully, he agreed!

Of course after he left I immediately felt guilty, which is just crazy because 9/10 times, I am the one doing the therapy shuffling. Anyone who has to bring their child to these types of appointments on a regular basis understands how exhausting it can get. This morning I was the child kicking and screaming “I don’t want to go”!! And while I am being honest, I have many moments when I want to just stop all of the therapies and just allow nature to take it’s course. Today is one of those days. As I sat with my hot cup of coffee surrounded by dust bunnies because I haven’t taken the time to clean my house, I cried. Not because I am sad, but because I am exhausted. Physically, mentally and emotionally. Probably because I allow guilt to take over ALL OF THE TIME.  Guilty because I feel like I don’t spend enough time with my son. I feel guilty for going back to work. I feel guilty because my husband and I never spend time together. I feel guilty because I missed putting my son to bed last night and will again tonight. I feel guilty because I have days when I want to run away. And I feel guilty for feeling guilty! Yep. Basically, I am a hot mess.

So here I am, writing this blog. I should be cleaning the dust bunnies and catching up on the mile high laundry pile that is starring at me as I type.  For now I am doing something for myself, so I can recharge, be a good mom, a good wife, and a better version of me.

If you are feeling tired and overwhelmed, find some time for yourself if you can. Even if it’s only for 10 minutes locked in your bathroom with the door locked. We all need a moment of peace. Grab it and don’t allow yourself to feel guilty about it.

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Acceptance and letting go

I started this blog 2 year’s ago. TWO year’s! I have so much to share and yet I have been afraid to put it all into words because then it is out there. Until today.

First, let me introduce myself. My name is Kendra. I am a wife, mom to one little boy who is 7, a nurse, a homeschool teacher, and advocate for children with Apraxia. I started this blog to share my personal journey through the (at times) choppy waters of special needs parenting. My hope is to bring comfort to those who can relate, to encourage, and to inspire. Maybe even make you laugh along the way.

Ok, so let me get to it. This morning I had one of those eye opening, kick you in the ass moments. At church of all places. Our morning started off like any other typical Sunday morning- get up, make breakfast, get dressed and try to get out the door to make it to church on time. Church (or any structured setting) is very difficult for our son. I mentioned above that he has Apraxia, which I will explain more about at the end of this blog but in short, it is a complicated neurological disorder that effects a child’s ability to produce intelligible speech. It also happens to be the most severe of all speech disorders in children. Along with Apraxia, some children have comorbidities that are associated with Apraxia. For my son, that comorbidity is Sensory Processing Disorder. In other words, he is constantly seeking some sort of sensory input and at times it is VERY challenging to deal with. From the moment he wakes up in the morning and until he goes to bed at night, he is at 110%. There is not enough coffee in the world to keep up with him. Believe me, I have tried.  Anyways, at church this morning my son wanted to participate in the children’s offering with our pastor. I always cringe at this because I am afraid of how he will react, or even worse, I am afraid of how other people will react. The looks and the stares. I know. I know. Who cares right? That is how I feel in most cases, but for some reason today I did care, and it got the best of me. Almost immediately after we joined the other kids and sat down (I went with him) my son began to lay across the steps we were sitting on and began to fake cough and ask for a drink of water. I asked him to wait until we were finished and he began to whine and hit himself in the arm out of frustration. I in turn took his hands and whispered in a not so calm tone, STOP IT NOW!! He began to cry immediately and we had to exit the congregation and sit in the hall. The moment I stood up I could feel the eye’s on me. Or so I thought. In my mind I was thinking “everyone probably thinks I am the WORST mother on the planet”. And maybe at that moment I was not the best mother. But what really hit me was my own behavior. You see, it wasn’t my son’s fault that he acted the way he did. He truly can’t help it. My reaction was out of frustration I felt myself. Frustration because deep down I still wish I had a child who could participate in these activities like other kids his age. Frustration because I realized in that very moment that I have not accepted my son for who he is. Sounds awful doesn’t it? Trust me, sharing this part of me is NOT easy. Ever since I knew my son was delayed developmentally, I have lived in a world of “maybe he will be better next year” “maybe this time next year he will be able to talk” “maybe it will get easier as he get’s older”. Truth is, it has not gotten any easier, in fact it has gotten harder. Why? Because it is never ending. The therapies, the out of pocket expense of therapies, not being able to have a conversation with my son about even the smallest thing about his day, and not knowing what the future holds. I know it could be so so much worse, but that doesn’t take away how hard this all is and how heartbreaking it is. After our incident, we got ourselves put back together and I brought my son to the children’s Sunday school while I listened to the sermon. As I sat there and took a deep breath, I began to cry. I couldn’t hold it back and tears just started to stream down my face. And you know what the best part was? I DID NOT CARE! It was such a relief. Or shall I say it was more of a release. At the end of the sermon our Pastor said something to me on the way out of church that hit me like a ton of bricks and made me cry even more. He said ” all are welcome here and he is doing GREAT”! He was right. He IS doing great and so am I. At the end of the day all we can do is take a deep breath and remember that we are all doing the best we can.

Today I am deciding to let it all go. Accept that I can’t change things or take back the mistakes I have made along this journey. Live in the moment and embrace the hard work and progress my son has made and continues to make. Today I choose to let go of the constant life sucking cycle of “what if’s” and allow myself to be blessed.

Blessed to have a child who makes me slow down and soak in the beauty of this life.

Blessed with the scenic route.

 

For more information about Apraxia please visit http://www.apraxia-kids.org