Losing Myself To Special Needs Parenting

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When my son Talan was diagnosed at age 3 with developmental delays and a rare neurological speech disorder called Apraxia, I thought that I could “fix” him. I thought, ok, I will get him the BEST speech therapy, the BEST occupational therapy, the BEST physical therapy, the BEST this and the BEST that. I thought that was all he would need and he would outgrow it and get better. Boy was I wrong.

What started as a journey to find the BEST therapies for my son and to help educate others about my son and his struggles, turned into a path of self destruction that I never saw coming until I was at my worst, 5 year’s later.

If you walk into my home you would assume it is some sort of therapy office. Everything I had seen my son’s therapists use that was helping him, I went out to buy for our house. Learning resources, books, special pens for writing, sensory toys, weighted blankets, swings, crash pillows, games, puzzles, things that promoted speech and language skills…..you name it, I bought it. I thought that I had to carry over everything at home or I would be failing him and his progress.

In 2012, I spearheaded the first ever walk for children with Apraxia in my home state of Rhode Island as a volunteer with the only national non-profit called Apraxia Kids. I wanted to meet other families with the same diagnosis who understood our journey, and I wanted to educate as many people as I could about Apraxia and how it effects children. I went on to coordinate this walk for 5 year’s, and to this day, it is one of the most highest highs of my life.

During those 5 year’s planning and coordinating the walk, I began to see a common thing each passing year; other kids were talking and moving on with their lives, while my son was still hardly able to say 2 words together and 90% of the time it was unintelligible. At first, I was just happy for these kids and their families. I swear I was SOOO happy for them. But as more time passed, I began to realize that my son may not ever have intelligible speech. The more and more I let that sink in, the more and more I sank.

By September of 2017, my last year coordinating the walk, I honestly felt like I lost my ambition to raise awareness. I lost what felt like my purpose to help others because I could not help my son and truth be told, it hurt. A lot.

About a month later, we moved to Florida. This is when I really started to become unraveled.

Shortly after getting settled into our new surroundings, I noticed some very big changes in Talan and his behavior. He became extremely anxious over things and he would whine and throw himself on the floor repeatedly while having majorly strong meltdowns.  For a little while I thought it was just the move and all of the big changes, but as time went on it got worse. I watched my son scream bloody murder and cry, I watched him hit the floor or wall with his palms as hard as he could, I watched him grab and pull at the skin of his arms and face. I watched my son fall apart on a daily basis from the moment his eyes opened at 6:30am, until he went to bed at 9:00pm. Getting out of the house became harder and harder, and eventually we stopped. We stopped our fun outings to the library, the playground, even the beach. The only place we could have fun was at our pool.

After discussing these changes with his Pediatrician, we decided to have Talan evaluated by a Neurologist.

We waited 4 months to get an appointment and the entire hour long drive to the appointment I felt sick. SO many thoughts and worries.

At the end of our almost 3 hour appointment, the Doctor told us that Talan had Autism. He also told us that he would more than likely struggle for the rest of his life. This was the moment that flipped my world upside down.

I left that appointment crying and feeling utterly defeated. But like I always do, I buried my own feelings and pulled up my big girl pants. I was ready for this. I will do what is BEST for my son and it will get better with the right therapy. Problem was, we already had the BEST therapists and it wasn’t working.

I never really had the chance to process anything. I never allowed myself the time I needed to wrap my head around another diagnosis added to the laundry list of other things he had going on.

Three months later, I started to feel extremely overwhelmed. The level of complete exhaustion was unbearable and the anxiety I felt the moment I woke up was crippling. I started withdrawing myself from friends and things I enjoyed. I couldn’t sleep and I was not eating well. Simply put, I was not taking care of myself. I had lost myself in trying to do SO much to help my son that I ultimately became his diagnosis. I was no longer a wife, a mom, and even worse…I was no longer Kendra. Everything I did was for Talan. I ended up being his teacher (we home school), his speech therapist, his occupational therapist, his physical therapist, and was there to put out a million tiny fires every single day. I never really had the chance to just be his MOM. The days were long, draining, intense, and limiting. My home became my prison instead of a quiet safe place. I felt trapped. I couldn’t breathe. But I kept going at this pace, even though I felt like I was drowning.

Fast forward to today, another 3 months down the line, 8 months since his Autism diagnosis, I experienced my first ever intractable Migraine which lasted for over 14 days. The pain was terrible and I felt lousy all over. I had extreme vertigo and felt dizzy all of the time. I felt ill daily. This was not normal for me so I finally decided to see a Doctor. After several labs and LOADS of blood work, my Doctor called me personally to tell me that he believed I was suffering from Adrenal Dysfunction and that he believed the culprit was “extreme long term stress”. He told me in order to feel better I had to make some dietary and lifestyle changes and I needed to “eliminate stress”.  I thought HA!! Sure Doc, that should be easy. Are you FREAKING KIDDING ME???  I was already doing the very best I could to manage my stress and to “cope” better.  Meditation. Prayer. Walking.  Talking to a therapist. Medication. Did I mention that I have also purchased enough self help books to open my own little shop? I mean, what more could I do?

After taking a few days to think about everything going on in my life, and making a list of the changes I absolutely needed to make, I realized a very big elephant in the closet. ME. I was the elephant. I was the one who put this immeasurable amount of stress on myself! I was the one who thought I could “fix” my son and that I was the ONLY one who could help him. I dove into the water of special needs parenting without a life jacket. Sure, I did awesome at riding those waves for a few year’s, but over time, my body was getting weaker and weaker and could no longer keep myself afloat. Did I ever ask for help? Nope. When someone asked how I was doing, my immediate answer was “I’m doing good”. LIE.

Why did I do that? Honest answer; I thought that I was the only one who could take care of my son. I was afraid that no-one would understand him like I do. Even admitting this and writing it here makes my eyes open so wide. I can’t help but think “wow”, I really went overboard and lost it. Of course, I did all of the above out of love for my son. Our job as parents is to protect them. When something is wrong we want to comfort them and make it all better, and I am finally realizing that I can’t make it all better. I just can’t.

The more and more I think about it, Talan is fine. He is totally and completely FINE. He doesn’t know a world any different than his own. He is happy. He is healthy. He is thriving in all of his therapies and with his school work at home. It took my getting sick and being on the verge of a breakdown, literally, to see this and to realize that I need to start taking care of myself again.

I am a work in progress. I am learning and growing from all of this. I am walking twice a day every day, doing yoga once a week and being gentle on myself and my body. It will take a while for me to heal, but I will heal on more than one level. I am allowing myself time to rest. Time to myself, even if that means I get up an hour earlier than anyone else to enjoy a cup of coffee, I do it. I allow myself the break, and if that means I put the tv on and let that be the babysitter for an hour then so be it. I don’t have to be ON 24/7. I don’t have to push myself to do just a little bit more.  I am learning to say NO. I am learning who the hell I am and what makes me happy and fills my cup.

So the next time someone asks me about myself I won’t jump to say ” I am a mom….a wife….a nurse….a teacher”. I will just be me. Kendra. All the rest are just bonus parts of me.

Parents: whether you are a single parent, a special needs parent or you have an army of help, TAKE CARE OF YOU. Don’t lose yourself in the mix. Be gentle and kind to yourself.

Love,

Kendra

 

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Making Plans and Breaking Plans: Special Needs Parenting in a Nutshell

Before I became a mom, I envisioned having lots of play dates, large birthday parties, trips with other friends and their kids, cousins, kids being kids, and having a great circle of support. I never imagined losing friends or even some family until having a child with special needs. I also never imagined losing support. But we have.

I often feel like a bad friend because I am constantly cancelling plans. When you have a child with special needs, your entire world flips upside down, and you aren’t the person you once were.

Today my life IS last minute. There are plans made, and then those plans are cancelled. Not because I want to, believe me, I WANT to get out and be with friends. So much. But the day to day shuffle of speech therapy, occupational therapy, ABA therapy, physical therapy, and trips to the Doctor can make for a very long day. Add to it that my son who has Autism Spectrum Disorder among other things, is constantly being pushed to do things that his brain/body simply cannot do. The days are long and I am often left feeling emotionally drained.

There are days that run smoothly, and many other days that do not. There are things that overstimulate my son, which causes extreme meltdowns and snowballs into a storm of HUGE emotions that break down. It’s like walking a fine line each day, trying not to cross over to one side too much. Everything needs to be balanced. Play dates, outings, special events (especially large crowds) have entered a holding phase where we say yes to these things, and then wait to see how the day goes before deciding to go or skip it. If you’re a parent of a child with special needs, you know what the outcome typically is.

Most of the time if you do attend any of these events, you spend the entire time running, chasing, entertaining, and playing with your child because there are social, emotional, and physical limitations. There is no time to relax and enjoy your friends or family, and by the end of the time you spend there, you’re exhausted.  Sure there are many other kids who go through all sorts of difficult stages and can make any outing exhausting. For most though, these stages are temporary and their child outgrows it. For our son, this not a “stage”. This is not something he will outgrow.

Having a child with special needs can make you feel like you forgot what the outside world looks like. There are many days you don’t even leave the house.

To the parents with a child who has special needs, don’t feel like a bad friend for cancelling more times than you would like. It is our job to keep our kids safe and in an environment that is best for them. Try to explain to your friends and family why you might be late or have to cancel. Help them understand as much as possible, and surround yourself with people who love and support you. Sometimes leaving the house is not an option. Sometimes you have to cancel for the 10th time, and that’s OK.

 

An Open Letter to the Doctor’s & Specialists Who Evaluate/Diagnose our Special Children

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It’s been a while since my last blog post. Life and family obligations have had my full attention and I am ready to start writing again.

A few weeks ago my sweet and beautiful son Talan was diagnosed with Autism. At age 8. After countless evaluations by every specialist out there starting at the age of 3.

Talan has severe Apraxia which effects him globally. That means it effects his body on every level; expressive and receptive speech, motor skills, imitation, motor planning, executive functioning, spatial awareness, and any task that requires on demand responses. The more difficult the task, the more he will avoid and shut down.

Recently, Talan has had a very hard time controlling his emotions whenever he gets frustrated, which is pretty often considering how difficult it is for him to complete simple tasks or communicate effectively. He is getting older, wiser, and more aware of his weaknesses. In turn, his frustrations and meltdowns are also growing bigger. Can’t say that I blame him, I would be pretty pissed too if I couldn’t say what I was thinking or feeling, or get my body to move the way I want it to.

About a month prior to all of these recent meltdowns, I had made an appointment with a Neurologist as part of Talan’s routine follow up care to a cyst he had on the left frontal lobe of his brain. I figured it would be a good time to mention my concerns and see if we could get any answers. Talan struggles greatly in so many areas, yet no one can seem to tell us WHY and even though every Doctor has said the cyst “may have contributed” to his challenges, no one will say it IS the culprit for sure.  ***sigh***

When we arrived at the hospital located in Tampa, FL about an hour away from our home, we were greeted rather quickly by a nurse and taken into a back room for a EEG (Electroencephalogram) which measures electrical activity in your brain. Talan was hooked up to this machine with multiple wires attached to his head. He had to sit as still and quiet as possible for 45 minutes. 45 MINUTES! This is no easy task for my son so I came prepared with a little prize for getting through the testing and it worked like a charm! YAY!

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While Talan was with his dad for the testing, I was brought into another room where I was met by the Neurologist and a Pediatric Developmental specialist. I was asked every question under the sun about my pregnancy, birth, and Talan’s development since birth. I gave them copies of every single evaluation starting at age one. I was prepared. I was poised. I was ecstatic that the EEG was going so smoothly. I was calm.

Until they brought Talan into the room. The tension went from 0-100 in the matter of seconds. Why? Because here he was, waiting SO patiently for that darn toy to be opened. A toy he sat waiting 45 minutes for, and now he was being taken into another room for more waiting. I could see in his eyes that he was DONE. He didn’t want to be in that office for another minute which just set him up for failure in my opinion.

The Doctor’s began asking Talan questions: “what is your name”?  “how old are you”?? “what color are my shoes”??  “are these papers under the table or on top of the table”??

In my head I was screaming STOP!!!!! Instead, I politely reminded these Doctor’s that Talan has profound Apraxia and that he simply cannot answer questions so quickly and that they needed to slow it down. Mind you, just this past Friday we met with a Pediatric Psychologist who asked these same questions slowly and NOT after a 45 min EEG, and Talan did great and was able to answer correctly! Go figure.

SO getting back to the Neurology appointment. After asking Talan a laundry list of questions and getting nowhere because all he did was whine and avoid everyone, including me, the Neurologist diagnosed him with Autism. He looked at me and my husband square in the eyes and told us that Talan would “struggle for the rest of his life” and to get ABA therapy (applied behavioral therapy) to help with his meltdowns. He also told us that he was “more concerned about how severe his Apraxia is than anything else”.  He then printed out a script for ABA therapy with a diagnosis of Autism Spectrum Disorder, and walked out of the room. He spent maybe 15 minutes with us. 15 whole minutes with my son and we left with a diagnosis of Autism in addition to everything else.

I left that appointment crying. Frustrated. Confused. I had even more questions than I went in with!

How could Talan have had SO many evaluations by SO many experts, including some of the best in Boston,  an Apraxia expert in Pittsburgh, and NOT one person mention Autism? Were they all wrong? Was this new Doctor wrong? Did we ALL miss something???!!!

So, here we are again. Meeting with yet another “ist”. Another person who will have a nice office with all of their amazing degree’s framed and hung on the walls along with a list of their areas of expertise.

I just want to tell these Doctor’s and Specialists something: it doesn’t matter what degree you have or how much experience you think you have. It doesn’t matter if you work at one of the best children’s hospitals or one of the worst. It doesn’t matter how smart you are or how many evaluations you have done.

What matters is if you are doing your job correctly.

If you are cramming too much testing into ONE visit.

If you are truly looking at a child’s diagnosis and history, and taking it all into consideration before appointments and evaluations.

If you are spending sufficient time with a child to come to a formal diagnosis.

I am here to tell you as mom, if you are NOT taking the time to do all of these things, you are letting our kids down.

You are wasting our time!

I am here to tell you that if a child has to go through repeated evaluations just 3 weeks after they see you in your office, you are doing something wrong.

To the Doctor’s and Specialists out there who are evaluating/diagnosing our special children, please pay attention.  You MUST pay attention. You can’t rush it.

You see a child with ADHD coming in? Why make them sit through a 2+ hour visit and expect them to hang in there? Why not split the appointment up over 2 days if needed?

You see a child (like mine) come in with major speech and motor planning deficits, why ask this child 10 questions quickly and expect an even quicker response? Why not allow more time for answering? Why not use more visual ques to help the child answer? Maybe for this child you should have a speech pathologist available to help facilitate the evaluation? Maybe an Occupational Therapist? Someone who  works with these kids each day and truly understands their diagnosis.

You see a child with sensory issues and you know they just sat through a test for 45 min with wires attached to their head. Why expect them to then sit down and participate in more testing for any length of time, when you know they are spent?? Why not schedule additional testing on another day when the child is rested and fresh?

Why cram so much in one visit when you know our kids need more time than that to process it all????

To the Doctor’s and Specialists who are evaluating/diagnosing our special children:

Our kids deserve your time. More time.

 

Sincerely,

A mom who will not accept a half ass evaluation

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It’s ok to fall apart sometimes

When you have a child who is developmentally delayed, some people will give you the “I’m sorry” look out of sympathy, while others blow it off like it’s no big deal. Of course we all know that children grow and develop at their own pace, but for you and your child, it is hard and it hurts.

My son is 8 year’s old and has some pretty significant developmental delays (according to evaluation reports and scores) and even though I know these tests don’t truly reflect his strengths and his abilities, it still makes my heart ache.

Sure, I will smile and put on a brave face for my son and stay strong for him. I will listen to the recommendations from specialists and make my check lists for all of the therapeutic interventions and doctors appointments he will need. I will keep more than one calendar (I have 3) to keep track of these appointments and carry on. I will do all of this because my son needs these things, and this is how it has to be for now. I will hide how I am feeling deep down inside and continue to dance.

The truth though is that I am hurting. For a long time I used to think this was all temporary and that my son would “catch up” to his peers and be a “typical” child. Today, I see a much different picture. I have come to realize the struggles he has are more than likely going to stick around for the rest of his life. That doesn’t mean he will not make progress, because he IS making so much progress! It just means that he will more than likely need help along the way. Of course this is not the end of the world and the most terrible thing, but it is not an easy thing either.

When I speak with other parents with similar circumstances, there is another side of this that many of us have in common and it’s called ANXIETY.  It is there and we need to talk about it more instead of shrugging it off saying “I’m fine”.

For me, I am usually lingering anywhere between feeling like “I’ve got this” or about to go completely bat shit crazy!  Sure, I have my good days. Really good days. Then there are also bad days. I am talking about the kind of days when leaving the house feels so overwhelming, it begins to bring on anxiety. Maybe it’s the lack of sleep, or the 3rd cup of coffee. Maybe it’s just the thought of driving 40 min each way to therapies and having to sit there for 2 hours. Maybe it’s because it feels so isolating sometimes that it is almost unbearable. Maybe it’s admitting that these feelings are real. 

I can’t tell you how many times I have cancelled plans because I am so anxious whenever I leave my son. There are maybe 3 people I trust to leave alone with him and one of them is my husband. I’m not even sure what exactly I am worried about. It’s just this constant state of worry. I know my son like the back of my hand. I know each sound he makes and what they mean, I know his body language and how to read it, I can tell immediately if something is wrong with him, I can understand him when no one else can. We have our own language and it is a beautiful thing, but being the only person who truly understands my son can be hard on me. There comes a lot of pressure with that, and when I have to leave the house and leave him, that pressure surfaces and a million “what if’s” engulf my mind. I know for some people this sounds crazy, and I have been told countless times that I need to stop feeling this way and that everything will be “alright”. I wish it were that simple.

When I share these feelings with other SN parents, they get it and this is why we need to talk about it more. Why I need to talk about it more. Not everyone will understand it and I don’t expect them to. This is my journey and the season I am in. I can’t change it and the more I fight it or try to go against it, the more difficult it becomes.

All I can do is continue to press on. Rejoice in the good days and just allow the bad days to happen. Admit that I fall apart pretty often, and that it’s ok to do so. It doesn’t make me weak or “crazy”. It makes me human.

For anyone else reading this, who feels the same way, you are human too and it is OK.

Just breathe.

 

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Finding ways to refill your cup as a special needs parent

If you are a special needs parent, I am sure you have heard the following statement: “I don’t know how you do it”. While most of the time I just smile and say something quick to change the subject, there are also times I want to respond saying “I do it because I have no choice” “I do it because there is no one else to do it for me”!!

There are appointments. LOTS of appointments; speech therapy, occupational therapy, physical therapy, follow up visits with pediatricians and care managers, evaluations, IEP meetings, sleepless nights spent worrying and researching, advocating, and doing the very best to support your child with special circumstances.

It is EXHAUSTING to say the least. There is usually very little help and a huge lack of a support system. Therapeutic services are usually not covered by insurance resulting in families having to spend a small fortune for their child to get the help they need, and paying for a babysitter is typically not an option.

Earlier this week, while having a conversation with my son Talan’s Occupational Therapist about all of his appointments and our homeschool schedule, she asked me a very important question: “what are you doing to refill YOUR cup each day”.

I kind of laughed and just shrugged it off, but driving home I started to think about her question more and more, and how important her question was.

Are we, as parents (special needs or not) taking enough time each day to refill our cups? I mean, if we are talking coffee, then YES my cup is refilled often throughout the day. LOL. But all joking aside, I wanted to take a minute to write down some of the things I have done myself, or have read somewhere on the interweb (probably at 3:00 in the morning) to help recharge our batteries.

Enjoy!

  1. take a walk
  2. meditate
  3. pray
  4. read a book
  5. take a 5 min mental break even if that means hiding in your closet for 5 minutes
  6. take a nap if possible
  7. call a friend
  8. drink a hot cup of tea
  9. bake
  10. practice yoga
  11. go to the beach
  12. get outside!
  13. give someone a hug
  14. watch the sunrise or sunset
  15. play music and dance
  16. take a bubble bath
  17. go out with friends if you can get out
  18. go on a date with your spouse or significant other if you can line up a sitter
  19. volunteer
  20. do something that feeds whatever you are passionate about
  21. go to a concert
  22. go for a hike
  23. sit in the sun for a few minutes and feel the warmth on your skin
  24. sign up for a class you have been wanting to take
  25. go see a movie
  26. eat ice cream
  27. have a glass of wine
  28. rent a kayak or a paddle board for an hour
  29. go shopping
  30. put yourself in time out

 

I know it is much easier said than done, but let’s all try to refill our cups. I hope in some way, this blog will help refill yours!

~Kendra ❤

 

 

 

 

 

 

 

Special Needs Parenting and Faith

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Today is one of those days I find myself getting frustrated, angry, and sad about the challenges my son with special needs faces on a daily basis. As I sit here even thinking about it, it almost feels like a double edged sword because on one hand my son has significant delays and hardships, yet on the other hand he is healthy. It makes me feel guilty for even complaining about the hard stuff when I know there are parents facing far worse circumstances than ours. At the same time I have to also remind myself that I am human and that the feelings I have are real and that I don’t have to have a child with life threatening circumstances to feel valid. My son has special needs and those needs are life altering.

Last week my son had an extensive speech and language evaluation due to his Speech Apraxia. You’re probably wondering what that is as many people have never heard of Apraxia. Apraxia is a rare, neurologically based, speech disorder that effects a childs ability to produce intelligible speech. There are different levels of severity ranging from mild-profound- my son’s case is more profound than most and he has been in speech therapy since he was 18 months old, he is now 8. Apraxia is also the most severe of all speech disorders in children. You can learn more about Apraxia by visiting http://www.apraxia-kids.org

In addition to the Apraxia diagnosis, my son also has significant developmental delays, motor dyspraxia, hypotonia, sensory processing disorder (SPD) and mixed expressive and receptive language disorder (MERLD).

Ok, getting back to that speech evaluation because that is what started me writing this piece and forced me to have a glass of wine (or two) in the first place.

No matter how many times I have been through these evaluations and KNOW what the outcome will be, seeing the numbers feels like a kick in the gut every single time! Reading test scores that show my son’s auditory comprehension and expressive communication is equal to a 3.5 year-old when he is 8, just hurts. He has been working SO hard in speech therapy since he was 3. Once again we are reminded (on paper) of how delayed he is and the light at the end of the tunnel is not even close.

It just took me into a downward spiral of sadness. Not for me, but for my little boy. I just want him to be able to learn like other kids his age and be at their level. I want him to have a thought and be able to say it clearly…to be understood! Man, it is so hard to watch your child struggle each and every day. The ability to communicate is something so many of us take for granted. Imagine not being able to share your thoughts? Your likes, dislikes, how your day went, or when someone or something has hurt you?

After reading my son’s evaluation report (all 10 pages) I started to zero in on those scores I mentioned above. I started comparing him to other children I know his age and even other children who are much younger and feeling sad that he is not a “typical” 8 year-old boy. Not a good place to allow your head to be…

Later that night my son grabbed his bedtime prayer book and turned to a page for me to read to him and this is what it said:

“you are one of a kind! In the world you won’t find, another someone like you. You can search high and low, go beyond a rainbow, but there’s no one who smiles like you. It is simple, you see, you are different than me. We’re unique in our own sort of way. The Shepherd chose you. You have something to do- and He’ll guide you along every day”.

I immediately began to cry, but with happy tears. My son chose this prayer and it was absolutely beautiful. It spoke to me, to my heart.

My little boy IS unique. He is perfect in every way! While he may not have the ability to communicate like others can (yet), he has the ability to show how caring he is, how compassionate he is, and how SMART he is. He knew I was sad that day, even though I tried my hardest not to show it, he saw me hurting and he found a way to make me feel better. Tests don’t come close to measuring any of those traits. Tests don’t measure how BIG his hugs are or how they instantly make me smile. Tests don’t measure how concerned he was at the playground the other day when a little girl fell and he ran over to help her. Tests don’t see the smile on his face when he hears our song that we always dance to and grabs my hand for me to pick him up while we dance with him in my arms and his head on my chest. You can’t measure these things because they are immeasurable.

By the end of that night, I was given such a special gift from my son. He reminded me that he is “one-of- a- kind” and he restored my faith that he will be just fine.

 

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. 😉

 

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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