Love, Marriage, Kids & Everything In Between

20171022_115108While having a conversation recently with a good friend, the topic of marriage came up. In particular we talked about marriage, kids, and how hard it can be to keep it together. My husband and I have been together for over 16 year’s and married for 10. Before our son was born 8 year’s ago we had plenty of fun times together and hardly ever fought. We are both huge baseball fans and spent many days traveling to major league baseball games. In fact, we love the sport so much that our wedding reception was set up to reflect our love of the game. Tables were named after MLB stadiums, and guests signed baseballs that we placed at each table. It was such a great day! We also traveled a bit and got to enjoy plenty of weekend getaways up north. We even got to have long chats about nothing and everything. Oh, and did I mention how my husband proposed to me in a canoe on a lake? Talk about romantic!!

Fast forward 8 year’s later, and lets just say things are different. Not bad different, but different.

We all talk about getting married, having kids, buying a home, and all of the other “life” stuff. What we don’t talk about though, is the really hard experiences that may come with all of those beautiful things. The birth of our son was the single most amazing moment of my life and my husband’s life. We waited a long time for that little boy and could not wait to start our family. We were ready. We read the books. We went to birthing glasses. We went to couples therapy. We. Were. Ready.

Looking back now on those baby classes and couples therapy sessions, all I can think of is one thing. Why wasn’t the topic of special needs parenting ever mentioned? Why didn’t our therapists ever ask us how we would handle having a child with special needs? I wonder what we would have said?

The first year of parenting was pretty “typical”. We were over the moon with excitement over every little thing, we were up to our ears with poop, and we were EXHAUSTED! Although now when I think of how tired I thought we were back then, I can’t help but laugh.

I started to notice things were “off” with our son around his 2nd birthday. He wasn’t talking like his peers, he didn’t walk until he was 18 months old, and he had some fine motor and gross motor delays. I also noticed that he couldn’t blow out his birthday candles. After many concerned phone calls and meeting with his then pediatrician, we we were told not to worry. We were told that he is a boy and “boys are slow to develop”. We were told he had “only child syndrome” and to give it time.

After another year of watching his peers speed right by him developmentally, we decided to contact a developmental specialist to evaluate our son at age 3. For anyone who doesn’t know what one of these appointments are like, it is not fun. The paperwork and questions are grueling and the appointment is 3 hours each day for 2 days. Every detail about your family history, pregnancy, delivery, and your child are discussed. Every little move and sound your child makes is carefully watched; their actions to certain situations, sounds, and the environment. Then you go back a few days later to discuss the evaluation and outcomes. That first evaluation was one of the worst moments in my life to be honest. It was the moment I heard a laundry list of areas my son was struggling in. As much as my husband and I knew our son had delays, it was heartbreaking to see how delayed he was on paper. His cognitive delays were pretty bad as was his speech. That day we left with a diagnosis of: developmental delay, speech apraxia, hypotonia, motor dyspraxia, mixed expressive and receptive language disorder (MERLD) and sensory processing disorder (SPD).

We were scared, confused, and in tears. Our son’s speech was so severely delayed that when I asked the specialists if our son would ever have intelligible speech, their response was “not sure”.  Our son, our 3 year-old sweet, funny, beautiful little boy could not speak, could not climb, could not jump, or ride a bike or scooter, could not blow bubbles, and could not do what other three year old’s were doing. Neither one of us were prepared for any of this and we had no clue what to do or where to turn. All we did know was that we needed to get our little boy started in extensive therapy 4 days a week for speech, occupational therapy, and physical therapy. Once we found specialists to work with our son we thought everything was going to be fine. We thought we were ready to handle it all and we began our journey as special needs parents.

Everyone knows parenting is HARD! However, special needs parenting is even harder. Some statistics even compare the amount of stress special needs parents face is equal to PTSD from combat in the military. I’m not sure I would compare it to that level of stress, but I will say that it is intense!

Then there are the statistics of divorce rates for couples who have a child with special needs. Did you know that it is more than double the rate of divorce than that of the rest of the married population? Crazy right? So this brings me back to my original question: why aren’t more couples therapists and birthing classes discussing special needs parenting, the possibility of it, and how we would handle it?

What I am about to share with you is my own personal experiences. It is personal, but it is real. When I told my husband that I wanted to write this piece, he immediately asked me why? The answer was simple; I want to share my journey with anyone who might read this and maybe help someone feel like they’re not alone. Every relationship is hard, and the challenges of co-parenting can add additional stress to any marriage. When a child has special needs like our son does, it poses a different level of stress and many times the burden of therapies, evaluations, IEP meetings, fighting with schools for support, fighting with insurance to cover the cost of therapies, lack of support from family & friends, doctor’s appointments after doctor’s appointments, the constant WORRY, and the lack of sleep can leave one or both parent overwhelmed. In our case, the stress fell on both of us and we were both taxed out.

When my husband and I both realized how much therapy our son needed we decided that one of us would need to stay home to make sure our son got to all of his appointments and received the level of care and interventions he needed. That person was me and I was happy to do it. I left my job as a nurse and began my new role as stay at home mom. My husband worked 12 hour days (sometimes longer) and traveled A LOT for work;and sometimes he was gone for weeks or months at a time. We both put all of our eggs into one basket and we grew distant, and with my husbands work hours and travel we grew even more distant. Not because we didn’t love each other or because we wanted to grow apart, but because by the end of the day we had nothing left to give! I was exhausted from being home with my son and being the sole provider for all of his needs, driving over and hour each way for his therapies each day, keeping the house clean and safe, carrying over therapy and educational needs at home, laundry, cooking, all of the stuff that runs a home, while putting out 1,000 little fires each day. My husband was just as exhausted from working long days at a job that is demanding, traveling, leaving the house at 6am and not returning until after 6pm on most days, and then having to come home and punch in to help me with bed time routine (which is like trying to gather a flock of chickens). WE WERE TOAST. One of us always fell asleep and then we would do it all over again the next day. It was like groundhog day. We were at the end of our ropes and we didn’t have a village. Sure, we had some help, but it was very little. Some family members kept their distance because they didn’t feel comfortable around our son and didn’t know how to engage with him. This added even more stress to our marriage so we ended up hiring a tutor to come help us out 3 days a week. She was a special needs educator and she ended up being a true life saver for our son and became a dear friend in the process.

Notice how everything we did revolved around helping our son? What were we doing to help ourselves though?? Not. A. Thing.

My husband and I got to a point where we hardly spoke and when we did, it usually ended up into an argument. We always discussed our son and how his therapies were going or how his day went, yet we never asked how WE were doing? When my husband went to work, he would call or text me and ask about our son but would never ask me how I was doing. There were no more relaxed nights on the couch watching our favorite shows because neither one of us could keep our eyes open. Date nights became so few and far between because let’s face it, leaving your child who has special needs is HARD no matter who you leave them with and when we did get the chance to get out, we always ended up talking about therapies, doctors, what we should try, and how tired we both were. There was zero romance, and intimacy was becoming extinct. I missed the intimacy. I missed feeling my husbands arms around me and kissing me goodnight. I missed laying in the “nook” of his arms and feeling safe. I missed the long talks we used to have. I missed going out for breakfast or coffee. I missed the sex! The unplanned spontaneous sex on the kitchen counter and I wanted it back. I wanted it all back, especially my husband and myself. We were both so lost.

Marriage counseling is not for everyone and it is not fun. It is costly and takes up more time which is something we were already short on. I remember telling my husband that we needed to invest into US. We bent over backwards to help our son and did everything possible to make sure he got the best care. It was time we did the same for ourselves and our marriage. If we didn’t, I was afraid we would fail and we both felt strongly that we did NOT want to end our marriage.  So we took one for the team and went to marriage counseling once a week for 16 weeks. I won’t get into all of the details of our therapy sessions together, but I will say that the homework was FUN!

Today, 3 months later a lot has changed. We moved 1400 miles away from home and life is just as crazy. Last week we ate frozen pizza for dinner more than I would like to admit, but we were all full and happy. We always sit down for dinner as a family and sometimes we save our dinner for after our son goes to bed when we can eat and chat about our days and just focus on us. One of my favorite things we do now is happy hour. We pick a few days each week to enjoy a happy hour when my husband gets home from work, and we have a drink together and unwind for 30 min. We talk more and fight less. We check in on each other throughout the day and just be present. There isn’t much time alone together but we are working on that. For now we are just making the best of our circumstances and giving each other the time we need together as a couple as well as separately. We don’t get out for nice romantic dinners or nice vacations alone together but you know what? It’s all good. This is the season we are in and one day we will get that time together. For now, I will take the over cooked boxed pizza for dinner, the conversations had while one of us in the shower and the other is on the potty, and the 30 min of quiet time we get each day. This is our journey. It isn’t always easy and we are far from perfect, but this is it. This is love, marriage, kids, and everything else in between.

Oh, and we now have an island in our new kitchen. 😉

 

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An Open Letter To The Newspaper That Excluded Our Special Kids

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“I’m not looking for special treatment, I’m just asking for our kids to be treated equally”

 

Last week my son participated in the Opening Day Parade and ceremony for the Cumberland Youth Baseball League here in Rhode Island. My son is a player on the Challenger team for children with disabilities. During the ceremony my son was selected along with 2 other children to throw out the opening day pitch. This was a very exciting moment for him and our local newspaper was there to document this moment as well as the entire parade and festivities. At the end of the day, the photographer asked for our son’s name, age, and had me sign a release form to use the photo.

I was SO excited to get the publication 2 days ago and quickly turned to the page where the opening day photos were featured. I kept turning from page to page only to find that my son was not there. The other 2 kids were there, so where was my son? In fact, there were no pictures of the kids from the challenger team. NOT. ONE. Maybe they were on another page? Let me look again I thought to myself, yet, those photos I was desperately hoping to find were not there. The only pictures featured were of the non challenger team kids.

In an effort to contact the editor of this newspaper asking why and HOW this could happen, this was the response I got:

“we treated those photos just as we treat all others. Some make it, some don’t”

I’m sorry, but how did ALL of the pictures of the challenger team NOT make it?

The editor went on to say that I was “looking for special treatment”.

No. I was not looking for special treatment. I was asking for my son and the other children on the challenger team to be treated EQUALLY”!!

Furthermore, the editor continued to be rude and condescending saying “it seems to us in the newsroom it’s not discrimination. To us and our photo editor it was just pictures of kids who turned out on opening day baseball day”

Well, to our special needs community here in Rhode Island it was discrimination. Would you call it acceptance? Your newspaper completely left out our amazing kids from your feature on opening day. How do you not see the wrong in this? Every single picture you included in your story was of players who were “typical” and not on the challenger team.

Shame on you. You are journalists. You should do better than this. Our kids deserve better than this. Instead of being an example for your readers and sending a message about equality, you sent a message that the special needs kids don’t matter as much as the typical kids. Big mistake and you missed out on such a great opportunity to educate our community about the importance of inclusion.

The banner that the challenger kids walk with has this quote ” Never Let the Fear of Striking out Keep You from Playing the Game”.

These kids amaze me. They teach us. They work hard. They love the game. They are special and I want them to know that we are all cheering for them.

Sincerely,

A mom on a mission to make a change

 

 

 

 

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.

 

 

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