Don’t Hide Your Pain

If you asked me about my son 2, 3, or even 5 year’s ago, and if I thought he would catch up, I would have said YES! Without hesitation. When my son Talan was younger it was easier to blend in and hide his differences and fake it. It was easier to live in a bubble filled with endless therapies and interventions that filled me up with hope that one day he would get better, or grow out of it, or catch up to his peers. It was easier to think things would be so different for him as he got older. I truly believed it would change as he got older. It didn’t.

Talan is 11 year’s old now and at his last wellness visit with his Pediatrician we went over his struggles and how to help him. I honestly thought the discussion was never going to end and after a while, I felt like all I could hear was background noise and not one word of our conversation. I heard things like “significant developmental delays” “intellectual disabilities” and the one that hurts the most… “life long”. When she said those words and told me to be prepared for Talan to live at home well into adulthood, I just cried. For both him and me.

I cried the entire way home thinking of FOREVER. What does that even look like? What about the life I envisioned for him when I was pregnant? What about the stress of all of this? How do I manage it all? And then the grief struck, and it struck me HARD. Grief by definition is a mental or emotional suffering or distress caused by a loss. I felt all of those so deeply: suffering, distress, loss. I felt like someone had sucked the wind out of my sails.

I remember calling a close friend of mine in Pittsburgh and she said something to me that no one has ever said to me before: “don’t hide your pain”. My immediate thought was that I had to hide my pain because I need to be strong for Talan. He needs his mom to be on top of things and ready for this journey. I have to hide my pain. Until I couldn’t anymore.

I would be lying to you if I told you I wasn’t struggling with my son’s Autism lately. BIG TIME. Each day, I wake up and my day starts at 1000 miles an hour. Between keeping up with my son’s high energy and behaviors all day long, I am left feeling emotionally drained. I can’t help but think this is like Groundhog Day. The cycle is repeated over and over. Sure we have fun together and there are really awesome and beautiful days, but there are some really not fun days that seem to never end. My patience is so thin lately and I struggle with this for myself because I am usually so patient. Truth be told, I have been feeling frustrated by some of the behaviors and the repetitive phrases my son says all day long. I am frustrated by the humming, the obsessing over toys, paper, tape, paperclips, boxes filled with junk, the constant whining, the pulling, and having things put in my face all day. The constant need of attention. It is all starting to feel heavier than ever and most days I just cry because I don’t know what else to do.

The pain that I feel as his mother and not being able to help him or “fix him”. The pain of watching kids his age go to school and learn and go on to the next grade, the next phase. The pain of letting go of that bubble where I thought my son would grow out of it and get better. The pain of letting go of those plans I had envisioned for him- high school, sleep overs, pizza parties, so many friends, college prep and acceptance letters, careers, marriage, babies…..all of it. As he is getting older, I can feel all of these things slipping away and the pain I feel is unbearable at times.

I am hoping that this pain I feel will one day bring growth. I hope by sharing my pain, it can help just one person feel like they aren’t alone and that they can let it out.

I hope by sharing my pain, one person will stop hiding theirs.

Toilet paper, facecloths, and maxi pads oh my

My sweet boy, you are getting so big. You are 11 years-old now and so many changes are happening to you and around you.

We are in the middle of a pandemic and stuck at home more than ever this past year, it is also winter and we haven’t been outside as much as you would like. You LOVE being outdoors (just like your mom). It’s your space to be free and not surrounded by walls or limitations. It’s your space to run around and move your body the way it needs. It’s your space to explore, to see, feel, and experience the world around you.

Your world is so open and beautiful. You love to make messes and water is your best friend.

You love ALL THE GLUE and rubbing it on any surface because you love how it feels against your hands.

You love stacking things and knocking them over to watch them crash.

You love hitting baseballs off of your Tee for hours and I always wonder how your arm doesn’t just fall off.

You love getting into things, especially in the bathroom. Today you flushed 2 facecloths and a maxi pad down the toilet and guess what happened? The water came overflowing and this probably made you SUPER EXCITED because well, it’s water.

I wish I could be in your world where these things brought me so much joy, I admire that about you. For me though, I feel exhausted. Exhausted because I feel like I put out 1000 tiny fires all day long every single day. And it can become brutally exhausting. And if I am being completely honest, sometimes I get upset because SOMETIMES my mind thinks “this is not how it should be”.

Today you watched me cry as I fixed the toilet (thankfully) and then cleared out the bathroom of all the things you can flush down the toilet. “this is not how it should be”.

BUT IT IS.

It is this way. And it might always be this way. That is heavy for your mommy. Not because I want to change you, but because I just wish it could be easier. I wish I didn’t feel like I am constantly competing in a race that I never trained for.

In my sadness, you came over to me and gave me a kiss and said “mama sad”. I told you yes, mama is sad, but it’s ok. Mama will be ok and Talan is ok. You gave me another kiss and I just told you how much I love you.

Sometimes I feel like I have this all under control, while other times I am crying while plunging a toilet while water is overflowing onto my bathroom floor. I may not always like it. But there is a season for everything. A season full of heartache and lessons. A season of growth and joy.

Our season might be a hard one right now, but I promise you it will be OK.

Constantly Constant

Sometimes I want to run away from constantly being constant.

That’s how I explain Autism in a nutshell. Our journey.

It’s a constant: constantly changing. Constantly up and down. Constantly researching. Constantly educating. Constantly advocating. Constantly helping. Constantly trying to keep up. Constantly trying to keep my head above water. Constantly testing my patience. Constantly strengthening my faith in God. Constantly reminding me to slow down. Constantly chaotic. Constantly blessed. Even in the constantly hard times….we are constantly blessed.

Too Many Therapies. When You Want to Let Go and Let God…

I would like to think that I have this whole special needs parenting gig down pat, but I honestly don’t. Special needs parenting is never the same from one day to the next. Not for our family anyway. We try like heck to keep things in order and maintain our own personal lives, but I am here to tell you that we fail at all of it on the regular.

When our son was a year old, he showed some delays with his speech and his motor skills. We were advised to start speech therapy and occupational therapy a few days a week through Early Intervention, which he began at 14 months. Looking back on those early year’s, it was so simple compared to now. The therapists would come to the house, play with our baby boy, and give us some paperwork to read with instructions to carry over therapies ourselves. They continued to do this two days a week until he aged out of EI at age 3. This is where the really big and heavy stuff came to light and it has not stopped since.

Over the year’s since this special needs journey started, I often find myself questioning how much therapy is too much? Since our son turned 3 years-old we have been in a bubble of therapies including: speech therapy, occupational therapy, physical therapy, behavior therapy (ABA), social skills classes, and the Chiropractor (once a week). I travel over an hour to/from these therapies four days a week and I sit at the therapy center he goes to for 3-4 hours each day because it is too far to travel back and forth with traffic through the city. When I say I feel burnt out most days, I mean MAJOR burn out and I don’t see any end in sight.

So back to that question above, HOW much therapy is TOO much? And when do you just stop and think “is this really worth it”?  I have to admit that I fall somewhere between let go and allow nature to take it’s course, and he NEEDS these therapies so suck it up soldier! There is no in-between. Maybe that is where I need to be in all of this. In the middle. NOT full on therapy mode but not nothing either. So where is that middle ground? What does that look like? Since we began this journey we have been DRILLED to think that our son needs ALL of this therapy in order to get better. But what if, WHAT IF this is our lifelong journey? What if he isn’t going to get better? When do we pull back and just let him be the amazing human he is and JUST BE??!! I am so thankful for the therapy center he goes to. SO FREAKING THANKFUL! I am thankful we have the opportunities we have found for him, and I don’t want him to miss out on these therapies and interventions that will hopefully give him a better quality of life.  I just can’t help but wonder if LIVING and PLAYING and EXPLORING would give him even more quality of life. Bring experiences to his world and let him navigate through it. With help of course, but let HIM be who GOD made him to be. I truly haven’t seen THAT much growth in the 7 year’s we have been at this to fully back the notion that THIS is how it has to be for him.

When we are home, or our doing things we enjoy doing, I see a sense of calm in my son. He also learns better this way and is more focused and engaged. I love seeing this side of him. I want that for him. I want more playdates, hikes, swimming, scavenger hunts, bike rides, scooter races, playground adventures, museums, zoo’s, and camps. Horseback riding, dancing in the rain, kayaking, trips to the beach, and just being present. In the moment. Am I throwing him and myself into the daily therapy schedule because it is best or because I am constantly being told he needs MORE. What if I believe less is more?? What if I want to show him that there is more to life than speech therapy, ABA therapy, social skills classes, evaluations, etc. What if I want to take him by the hand and show him that it’s ok to let go and let God. Let go. And let God. Together.

 

When Hope Hurts

 

Last week was filled with lots of tears, BIG emotions, hugs, and space. Space to allow Talan to let out those big emotions. Hugs to remind him that it is OK to feel those big emotions and not know what to do with them. Tears, because there is not a single thing I can do to make it better. Tears, because I know this is how it will always be for my son. He will always struggle to communicate to others and be understood, and he will KNOW that others don’t understand him. Tears, because I know the way I felt when he was 3 year’s old, and I thought he would outgrow everything and catch up to his pears, those feelings are gone.

Gosh it feels awful saying those words and putting them out there. AWFUL! But, it’s my world and it’s an honest place I’ve come to. I feel like it’s too painful to keep wishing he would “catch up”. It’s too painful to hold onto that hope, and continue to be reminded that he is just as far behind now at age 9.5 as he was at age 3. It’s a slap in the face and just too much to hold onto. For for now, the dreaming of him catching up just needs to be placed somewhere deep deep down so it won’t hurt any more.

I know I will bounce back and not feel so down in the dumps, but for this season I am in, Hope just hurts.

 

What I Didn’t Know

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When our 9 year-old son Talan was diagnosed at age 3 with Apraxia and severe developmental delays, my husband and I decided it would be best for me to leave my job to stay home and take care of his needs. The speech therapy, occupational therapy, physical therapy, and any other additional things he needed to help him. I knew there would be a lot of driving to/from these appointments, I knew there would be fun days, and not so fun days. I knew it would be worth it and I knew (or so I thought) he wouldn’t need these therapies forever. We wouldn’t be doing this in 2 years….3 years….4 years. Or would we?

As the year’s have gone by, there are so many things I am learning along this journey of special needs parenting. Things I realize now that I never realized 6 year’s ago.

What I didn’t know:

I didn’t know we would still be here at age 9 talking about how delayed our son is, 6 year’s later. After year’s and year’s of INTENSE therapies. He is still SO far behind.

I didn’t know that my son would struggle with writing.

I didn’t know that he wouldn’t be able to talk effectively and be understood by his peers, and still struggle to communicate to the beautiful world around him.

I didn’t know that he would struggle with reading/

I didn’t know he would struggle greatly with basic math.

I didn’t know how lonely this road would be or how exhausting it feels.

I didn’t know there would be SO much heartache.

I also didn’t know that he would make me laugh so hard that I would cry. 30594175_10215873028808305_5047721182900518912_o

I didn’t know that he would be able to communicate his love for other people through actions.

I didn’t know he would shriek with glee over the littlest things, simple things, like going for car drives at night looking for Christmas lights.

I didn’t know that his heart would be bigger than anyone else I have met.

I didn’t know he would LOVE country music so much and know every single artist and every song they sing.

I didn’t know that he would be an amazing swimmer, golfer, cook, lover of animals and an amazing hug giver. Seriously, like the BEST hug giver on the planet. The kind that warms your soul.

I didn’t know that even with all of the sadness I feel; he would push me to continue to be the best mom I could be.

I didn’t know that I was about to learn so so much, or that my son would be my teacher.

Most of all, I didn’t know how much purpose he would give ME.

 

 

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The Thick Of It

It’s late at night and I am sitting in bed writing. I should be getting ready to call it a day and get to sleep, but my mind is not having it. Today was a typical day for me and my 9 year-old son Talan who has profound Apraxia, Autism, and severe developmental delays. Our day started at 6:30am and at FULL speed like every morning. There is no easing into our routine. At 6:30am, it is already chaos. Before I even have the chance to wipe away the cobwebs from my eyes or even get my blood circulating, Talan is up, asking for his dog Chip and repeating things over and over. He get’s frustrated quickly, and usually takes off his pajamas and whines. All morning. I get is talker (AAC device) to try to help him communicate his needs, but we end up at the same dead end. There is no rhyme or reason for the OCD type repeating or the whining. It’s just something that goes on each and every morning and usually ends up in some form of meltdown due to anxiety. I get him back on track by reading a book or doing a puzzle. Lately he is really into his new puzzles that help him spell words, so we get dressed and sit on the floor and do word puzzles. We eat breakfast, brush our teeth, and leave the house by 8:30am to start his day at ABA therapy where he stays for 3 hours a day, 4 days a week. I am so grateful for those 3 hours because it is literally the only time I get to myself, usually that time is only about 2 hours by the time his therapist and I chat and I get home and turn around to go back to pick him up. Now, I am not complaining, believe me, those 2 hours are still amazing!!

Today was a hard day. Not for any one particular reason, but for a bunch of reasons. As I sat looking over a handout given to me about pre-kindergarten readiness charts for reading, writing, and math; I was hit yet again with the reality that my 9 year-old son is at the level of a 3-4 year old. Even though he has made such HUGE gains, he is still significantly behind where he should be. How can this be? How did we get here? All day I felt like I was spinning on a hamster wheel just going and going and going…….

 

I usually don’t worry about where Talan is developmentally. I had to let that go, because it was eating me alive. It was sucking my joy and leaving me in a constant state of grief. Or maybe the truth is, that I DO worry about it all. It DOES bother me. It DOES break my heart over and over. I DO feel like I am in a constant state of grief. And maybe, just maybe, I have not let ANY of that shit go.

I am constantly reminded how far off we are. Constantly. Now, don’t get me wrong, there has been SO much progress. There are things to celebrate, and we do celebrate! I want you to know that there are so many things that I am thankful for and most of the time I am ok with where we are at. Today is not one of those days. It’s just not, and I can’t seem to get myself out if that space.

In a world full of social media posts and insta stories, it is hard to watch our friends and family and their kiddos thriving and moving on as they should be. Playing sports, making friends, hanging out, being a part of something. Belonging. Just being a kid. I see friends and other parents going out, getting dressed up, smiles on their faces, and going off for a night out or a weekend away without a care in the world. That is not our world at all. Our world is very different. It is isolating. It is lonely. It is filled with therapies and other appointments. It is tiring. It can be all consuming. I know many of you reading this will say “make the best of it” “it could be worse” “it’s not that bad” “you need to force yourself to go out”. And maybe all of that is true. But it is hard. I have friends who’s kids used to be where we are but have now outgrown their differences, and they seem to have forgotten what it’s like to be here. In the thick of it.

We are constantly walking up a hill, get to the top and think we have made it, and then right back down to the bottom again. There is no end. To say that it is exhausting doesn’t even cut it.

I am sure I will feel differently tomorrow after I have some time to sleep on it and dust myself off again like I always manage to do. But today I am not there. Today I am in the pit. I needed to get the thoughts out and this is where it took me.

For those of you in the thick of it. No matter what that means for you, it’s ok to be there and not feel ok about it. Let it be and just try again tomorrow. I am going to tell myself the same thing and try to get some much needed sleep. Wish me luck!

Love,

Kendra

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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