Meeting milestones

Eli accomplished two major milestones over the last couple of weeks. First of all, he mastered the unsupported sit.
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He has thoroughly enjoyed seeing the world from a whole new point of view.

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Then, two days ago, while his new speech therapist was here, he crawled! He went commando style (on his belly using his legs to inch forward) after a piece of paper of all things. Who knew that’s what it would take! His determination was fierce. I was in awe. Next we will work on hands and knees crawling but I’m in no hurry. I appreciate each milestone he hits, when he hits it.

I was chatting with a mom who is new to this journey (she found out her son had Down syndrome at birth six weeks ago). I told her that one of the wonderful things about Down syndrome is that our babies stay babies just a little bit longer. I appreciate every little thing Eli does instead of just the major milestones. The other day he mimicked his daddy by raising his eyebrows back at him. Our claps and cheers would’ve suggested he did something much more impressive – but to us, it was the most amazing feat ever. We celebrate everything – so much so Cody now claps and cheers each time Eli takes a bite of food or picks up a toy. I guess mommy and daddy aren’t the only ones ridiculously proud of the youngest member of our family! Have I mentioned what an awesome big brother Cody has become?!
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I hesitate to “brag” about some of Eli’s accomplishments out of fear of hurting another parent’s feelings. It’s hard when you hear about a child accomplishing something your child has yet to do. You start to feel a tad jealous or inadequate as a parent or fearful you aren’t doing enough to help your child succeed. We’ve all been there. We’ve all thought it. None of it is true but they are rough feelings to process. Being the parent to a child with special needs takes extra time and energy. I never thought I’d have to spend 2+ hours a week with a therapist teaching my child how to sit, crawl, speak, and eat. I was enough for Cody, but Eli requires more focus. That can be daunting at times. It has been overwhelming some days. But, the look of satisfaction on Eli’s face, and the pride I felt swell up in my heart, makes every single second worth it.

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I continue to be inspired, in awe, and so very proud of both of my sons. We are truly blessed.

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Tear clean up in aisle 12

The other day I cried in the grocery store. But I wasn’t sad – I was actually very happy. I was overcome with emotion because everything was just so normal. Cody and Eli were riding in the cart together for the first time. It was so fun seeing big brother teach his little brother how to “drive” the car.

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I stepped back for a moment and just took it all in. A year ago, I couldn’t visualize what our new “normal” would be. Heck, 6 months ago I still really had no idea. Two days ago, in the middle of the grocery store, I finally caught a glimpse of it.

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We really are no different than we were before Eli came along. Eli does typical things. Things I was once so worried he wouldn’t, or couldn’t, do. He eats, he drinks from a cup, he plays, he moves all over the floor, he talks (babbles “Mama”, “Dada”, “Ba Ba”), he’s learning to sign, he smiles, he laughs, he steals the hearts of most people he encounters. Yes, another major surgery is looming on the horizon – but right now I am choosing to bask in the normalcy of life. And praying for it to stay this way for awhile.

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Officially SEIZURE FREE

Eli had his follow up EEG today. His neurologist said everything looked perfect. All brain activity is normal. Woo hoo! Praise the good Lord. He will be off all medication in two weeks. There is no plans for a return visit to the neurology department unless the seizures return. Infantile Spasms can re-appear but we will remain hopeful that the seizures are a thing of the past forever…Soon to just be a distant memory. Eli is especially happy not to have to partake in any more EEG’s. He is not a fan.
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I am so thankful that this whole process was relatively easy compared to some of the horror stories I’ve heard about. Infantile Spasms are very hard to treat sometimes. We are lucky that we caught them super early, treated aggressively right away, and got the whole thing under control within 3 weeks. I give thanks to the doctors who supported us throughout this process, most notably, Eli’s pediatrician Dr. Partridge. She took me serious from the get go. I am forever grateful to have such an amazing professional support system in Eli’s corner. Go team Eli!!!

It is awesome to see him reaching so many milestones now. He rolls over from back to front and from front to back. He can sit up unassisted for a couple of seconds. He reaches up when he wants to be held. He can sit in a high chair, a Bumbo, and an activity jumper. He may be a little behind at reaching some milestones but he is catching up at record pace! He is a determined baby that is for sure. Eli also had his first taste of rice cereal on Mother’s Day. He definitely seems to enjoy it!
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Next we’ll try fun stuff like applesauce, bananas, and squash (those were Cody’s favorites)! I’m excited to have my baby back!!!

Thank you all for prayers, love, and support. This road would be a lot harder to travel without so many of you routing us on! I am so, so, so proud of our boy for getting through another challenge. He inspires us daily. As always, we are truly blessed.
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If I knew then what I know now…

Yesterday (May 8) marks the one year anniversary of the day we got “the call”. The call that confirmed our unborn baby has Down syndrome. Our Down syndrome day. The day our lives were forever changed. One year ago we thought it was the worst day of our lives – the ending of our life as we knew it. Truth be told, it was just the beginning. The beginning of actually living life. A second chance to appreciate the world and all that is in it. My eyes were opened (and looking quite scared I’m sure) that day in May. My heart was opened October 25 when our little boy was born. Oh we are so blessed. So, so blessed.

Please note, our lives are not perfect. Not even close. Although I try to remain upbeat and positive in this blog, we struggle just as any family does. But, our challenges are not because Eli has Down syndrome. We have more bills than we have money. Our car is in the shop. Our toddler decided to throw an embarrassing tantrum in the middle of the waiting room at the doctor’s office. I’m sure those “problems” are probably similar to half the population. It’s called life.

We went to the beach this past weekend. The same beach that we went to last year that helped cleanse our souls and pointed us in the direction towards acceptance. To read about that trip (and the sad, overwhelming few weeks leading up to it) check out my very first blog post – ACCEPTANCE. This trip, I spent a lot of time reflecting. I thought about the scared woman who cried so many tears after receiving that phone call. The husband who physically and emotionally checked out for a week. The friends and family members who offered their condolences. The baby that was growing inside me, completely unaware that we were all so devastated. It seems like a lifetime ago. Yet I remember it like it was yesterday.

If I only knew then what I know now, I wouldn’t have wasted so much time grieving. I should have been celebrating. Rejoicing in the blessing that was being bestowed upon us.

If I only knew…
We are good enough parents to “handle” this. We can do more than we ever expected (and do it well!).

If I only knew…
I would be fortunate enough to meet a whole group of new friends, some who have become like a sister to me (and reconnect with many old friends throughout this whole process!).

If I only knew…
My baby will be cute. Quite possibly cuter than typical babies. 😊

If I only knew…
I will find strength in myself that I never knew existed. But, that strength will never compare to the strength I see from my child.

If I only knew…
Cody will be ok – even through four hospital stays, a host of health issues, doctor visits, and therapy all for his brother. He still goes to bed each night telling me he loves me and that I am his best friend.

If I only knew…
Eli will do things at an “age appropriate” level. And when he does fall behind on occasion, it is not the end of the world. (By the way – He rolled over for the first time this past weekend. He sat unassisted for the first time today!!!).

If I only knew…
Dreaming about his future is ok. He will have a future.

If I only knew…
Super heroes are real. My son proves it.

If I only knew…
I will love this child with every fiber of my being. I love him just as much as his brother (I really was once afraid I wouldn’t love him as much!).

If I only knew…
I will eventually forgive myself for the feelings I once had.

I took a bunch of pictures at the beach. Some of Cody, some of Eli. When Cody’s shadow joined him in a picture, there was only one. (I am referencing an amazing picture I posted in ACCEPTANCE). That shadow joined him in the flesh this time. I am still certain that extra shadow was his brother.

One year later I can tell you life certainly is ok. It is more than ok! Through our challenges and subsequent triumphs we, as a family, have made it through stronger, tougher, and more appreciative. Life is different. It is actually better than I could have ever imagined.
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The One

April 30, 2012 was the last day of my former life. On May 1st we received a phone call telling us the baby I was carrying had a 1 in 3 chance of having Down syndrome. That meant out of 3 pregnant women with the same prenatal testing results as mine, 1 would have a baby with Down syndrome while the other 2 would not. I was stunned. I was confused. Angry. Scared. Sad. Devastated. Name a negative emotion and it is highly likely I felt that. I cried. A lot. We prayed every day that our baby would not have Down syndrome. That we wouldn’t be the 1.

As you all know, we were the 1. Our baby does have Down syndrome. 365 days ago I thought that meant I was the unlucky one. You know who is unlucky? Those other 2 women who don’t get to experience the overwhelming love I feel when looking into my son’s beautiful almond shaped eyes. Those 2 aren’t lucky enough to be a part of this oh so special club I’m a part of now. They didn’t get the opportunity to “meet” new friends and develop amazing bonds with people who share in a kinship like no other. The other 2 weren’t lucky enough to be shown the world from a totally new perspective. A kinder, gentler, more accepting, less judgmental way of life. The colors that surround my world are more vivid now. My eyes have been opened. I am the lucky one.

I am no longer sad, scared, or angry. Those feelings have been replaced with happy, hopeful, and joyful. This time last year, I was just going through the motions. Now I try to truly live and appreciate this life. My life. The one God has mapped out for me. For us. For my family. Sure, it hasn’t been all peaches and cream. Eli has not had an easy start. But his strength inspires me on a daily basis. I witness his perseverance. He amazes me. I have learned so much from him yet he is only 6 months old. I am so excited for the road ahead of us. Yes, it is the road less traveled – but I am one of the fortunate few who get to go on this journey. Yep, I am the lucky one. 20130502-010916.jpg

Trying to stay grateful while trying to stop the seizures (day 12)

I was going to write an update on Eli yesterday but in light of what happened in Boston, it didn’t feel right. What a sad day – for Bostonians, for the country, for human kind. I adore Boston. It’s one of my favorite cities. I like the Boston Red Sox and I love the Boston Celtics. Most of my family is from, and many still live in, New England. I find it heartbreaking that an event that brings together people from all around the world, was shattered by such insanity. My heart goes out to those that lost a loved one. My prayers go out to all the victims of another senseless act of violence.

As far as Eli and his seizures, things seem to be staying the same. We are on day 12. By now, they should be gone – at least that was the impression I was given. Yesterday, although he was still having seizures, they did seem smaller. Instead of 20-40 spasms in a cluster he had 2 or 3. It was very promising. And then he had one with 25. But, it was still better than the day before. That’s all we’re looking for – progress. Today he woke up and right away had a seizure. Then he had one before his injection and again in the parking lot at the pediatrician’s office, then when we got home, then again after lunch, and again while he lays in my arms while I type this on my phone – most with 20+ spams. So, today we’re right back to where we were. So frustrating!

I did speak with the neurologist yesterday. I expressed my concerns about the ACTH not working, even at the increased dose. His thought is, let’s give Eli “the benefit of the doubt”. He stated that it is very “atypical” for a child with Down syndrome not to respond favorably to ACTH when treating Infantile Spasms. I get it. He finds it hard to believe that Eli will be the one that it doesn’t work on. I should have reminded him though – our Eli is anything but typical. He does things his way, in his time. I’m certainly willing to keep trying it. I’d hate to give up when we already have so much invested. But I also don’t want to miss out on the opportunity to try something else. Time is the enemy. We are dealing with a “catastrophic” seizure disorder. The damage Infantile Spasms does to the brain sometimes cannot be reversed – or it could take years to ‘fix’. That is a scary realization. He’s already experiencing the nasty side effects of the drug (weight gain, irritability, no ‘personality’). I’ve only seen him smile once since getting into the thick of this treatment. That is the hardest part of this process. I miss my baby. I miss his smiles and his laugh. I miss his sweet personality. I miss looking into his eyes and seeing a brightness. Now he just seems ‘distant’. He tires very easily so we don’t get to play much. But, I do get more snuggle time because he always wants to be held.

Please continue praying. Each day I wake up and pray that today will be the day the seizures stop. Each time I give him an injection I say a prayer that it will work and doesn’t just end up doing more harm than good. Each night I pray for a better day. And I also pray for all of you. Every single one of you that prays for, thinks about, asks about Eli. Each one that has offered dinners for us, or to go shopping for us, or to just be there for us. Most people don’t understand what it’s like to have a sick child. They don’t get the strain it can put on a family. I won’t lie, it’s rough. I considered our family to be strong. Heck, we’ve been through a lot already but always weathered the storm. This storm is more like a hurricane. We’re staying afloat, but sometimes it feels like it’s just barely.

But, today I still woke up grateful. My children are alive. I am able to hug them and kiss them and hold them. Some families no longer can. I will never take a day for granted – good or bad.
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Reflect upon your present blessings, of which every man has plenty; not on your past misfortunes of which all men have some.
– Charles Dickens

Stopping the seizures – Day 8

Well today is day 8 on this hellish journey. I hate to start off that way but I’m not the sugar coating it type. Eli is still having seizures. Yesterday the neurologist doubled his dosage of ACTH since he hasn’t shown any improvements. Now he’s getting 0.6ml of the “liquid gold” injection daily. The good news is: I am getting better at giving the shot. I am still nervous but my confidence is increasing. The bad news is: Eli had more seizures today than any day prior. I just don’t get it! I was told “Kids with Down syndrome respond so well to treatment” and “Most kids stopped having seizures after the first few injections”. So why does my kid not respond to this treatment? Is there another cause of the Infantile Spasms? Because Eli has Down syndrome, the neurologists just assume that’s the cause. Infantile Spasms are most likely caused by one of the following:
•Central nervous system infection (for example, meningitis, encephalitis)
•Abnormal brain development or injury
•Neurological disorders with skin lesions (for example, tuberous sclerosis, neurofibromatosis)
•Genetic abnormalities (for example, Down syndrome, Miller-Dieker syndrome)
•Metabolic disorders (for example, mitochondrial diseases, phenylketonuria, hypoglycemia)
(www.infantilespasmscenter.org)

Is it possible that Eli could have something else going on and Down syndrome is actually a non-factor? Yes, it’s possible but definitely less likely. We pray that there is nothing more sinister happening with him to be the cause of the Infantile Spasms. His neurologist explained that it sometimes takes longer to figure out the right combination of drug therapies to stop the seizures. We will try the higher dosage of ACTH for 2 weeks. If that doesn’t work then we go to plan B (I have no clue what that is since I was certain plan A would work!).

The roller coaster of emotion is taking a toll on us. Each day we wake up wondering if today is the day the seizures will stop. We wait with baited breath until he eventually has one. Then the rest of the day we feel defeated, deflated, and downright depressed. Today we passed that old church sign in the country. Yesterday, it had something about Easter on it. Today it had been changed. It said Jesus gives new life. Start yours today. I got very excited and hopeful that once again that sign was speaking to us. (Confused? I’ve written two previous posts about said sign “A sign that speaks to me…” and “Having faith”). I thought it was telling us that Eli’s new life (seizure free) would start today. But, it didn’t. Maybe this is the beginning of the drugs working. It takes time. I just pray it doesn’t take too long.

Eli’s picture on Circle 21’s Facebook page Wednesday received 8,400+ likes and comments!! That’s over 8,400 people who are praying for, said a prayer for, or are just thinking about our sweet boy. 8,400 people – How awesome is that?! That’s pretty amazing. Just like Eli.
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A welcome surprise

I woke up this morning to Eli having a seizure. I thought aloud that this was not a good start to our day. As he lay sleeping on my chest, I opened Facebook. A group on there, Circle 21 (with 81,000+ “likes”), posts two daily photos of a person (mostly children) with Down syndrome – one in the morning and one in the afternoon. Guess who’s photo was featured this morning?! Our Eli’s!!! I submitted his photo on Monday (they receive numerous photos each day) in hopes that they would one day pick it. I am so honored that they chose his photo to post this morning. It is just the boost of encouragement that this mama needed. So far his photo has thousands of likes and hundreds of encouraging comments. I’ve even connected with two new “friends” who have previously been through similar experiences. Ahhhh, the wonders of the Internet. Sometimes, it can be a true blessing. Thank you Circle 21 for making this proud Mommy’s day!!!

Here’s the photo and his “story” (for those of you who aren’t on Facebook or haven’t yet “liked” Circle 21). 20130410-073020.jpgThis is Eli. He is 5 months old. He was just diagnosed with Infantile Spasms. He is almost 3 months post open heart surgery and very recently spent 6 days in the hospital with RSV. He is strong and brave and resilient and inspiring. Eli is most definitely our Superhero.

My crash course introduction to Infantile Spasms

An estimated 8-10% of babies born with Down syndrome end up with a seizure disorder called Infantile Spasms (www.ndsccenter.org).There are around 6000 babies born with Down syndrome each year. So, 600 of those babies will also have seizures. Sadly, Eli is one of those 600. We confirmed yesterday that he has Infantile Spasms. The good news is that we caught it early – very early – so we can start aggressively treating the seizures.

It’s been an emotional week. Last Wednesday, the day after we got home from our most recent hospital stay, I noticed Eli was having what looked to be startle reflexes. But startle reflexes are a newborn thing and Eli is not a newborn. I had heard about Infantile Spasms from some of the mommies in our local Down syndrome support group. It was one of the things I prayed Eli would not have. The seizures cause developmental regression and mental impairment. You can learn more about Infantile Spasms here. I immediately googled Infantile Spasms and Down syndrome and knew with almost certainty it was what I was witnessing in Eli. Noah’s Dad (a popular blog by a dad of a boy with Down syndrome) had some wonderfully informative information (with video) on his site. Comparing the video to what I was witnessing in Eli, I just had that gut feeling (mother’s intuition) that this was serious. I had a bronchiolitis follow up appointment with Eli’s pediatrician, Dr. Partridge, on Friday. I mentioned my concerns. Thankfully, she took my concerns seriously and sent in a referral for an EEG at Children’s.

On Easter Sunday, Eli had 50+ little seizures/spasms within 5 minutes. It was terrifying. I texted Dr. Partridge and within minutes she was on the phone with the on call neurologist at Children’s (have I mentioned lately how much I love Eli’s amazing pediatrician?!?). He advised that they wouldn’t do an EEG on the weekend so, instead of ruining our day just to sit in the hospital, we should continue monitoring the seizures and try to enjoy our Easter (which we did, especially for Cody’s sake!). The neurology department called on Monday (after Dr. Partridge called them first thing in the morning to insist Eli be seen ASAP) to schedule an EEG and consult.

We went in for the EEG yesterday. Poor Eli did not like being kept awake the entire car ride to the hospital just to be told to sleep for the EEG then woken up to “perform” a seizure (which of course he didn’t do because babies and pets never do what you bring them into the doctor or vet for!). He also didn’t like having all of the electrodes ‘glued’ to his head! After reviewing the EEG, the tech spoke with the neurologist and informed me that “they had enough information” and “they didn’t need to witness a seizure” (I knew that wasn’t a good sign). We met with Dr. Gospe (the head of Neurology at Seattle Children’s) along with Dr. Beatty (resident/fellow) who informed us that Eli did, in fact, have Infantile Spasms. We discussed the three treatment options (injectable steroids, oral steroids, or a combo of anti seizure medication and vitamin B6). I had done my research prior to our appointment so I knew that children with Down syndrome have responded positively to treatment, especially the injectable steroid ACTH. I told them I wanted to treat this aggressively and hopefully be successful the first time. Many people try the oral steroids or anti seizure medications first and if that doesn’t work switch to ACTH. Since we caught these early, I want to stop them quickly – before too much damage has been done. Eli has currently showed no signs of regression. My hope is to keep his development on track. The doctors agreed that ACTH would be the right course of action to best treat Eli.

ACTH is a ridiculously expensive ($10,000 a vile!) drug so there are a few hoops to jump through before being approved to start the therapy. Eli is scheduled to be admitted to the hospital on Friday. He will be given the injection and monitored. Over those next couple of days we will be educated on how to inject him at home. He will get a once daily injection until the seizures stop. Once we have observed that the seizures have stopped physically for 4-5 days, he will be given another EEG. If that shows that the seizure activity has stopped in his brain as well, he will be weaned from the medicine.

We have been advised to expect weight gain, extreme puffiness, irritability, an insatiable appetite, and sleeplessness. Obviously, none of that sounds fun for Eli or our household. I have also been told (from other mommies) to expect the Eli we know and love to “disappear” for a month or two. One gal said she didn’t see her child smile for months! This is what saddens me the most. Our boy has always smiled through the hard times – that’s what keeps us going. I am taking a lot of pictures to reflect back on when we’re in the midst of this mess. I am scared but I know this is what will save him – save his future. We can get through this just like we have leapt every other hurdle we’ve encountered with our boy. He is certainly giving us a run for our money!

Being at Children’s yesterday we felt sad but very grateful. Grateful we have a support network that educated me on what to look for. Grateful for an amazing medical team who rallies around our boy and always takes this mom seriously – especially Dr. Partridge who never takes me for the crazy, overreactive mom that I am sometimes afraid I’m being. As she put it yesterday, I walked into her office and told her exactly what he had within 48 hours. Many doctors would not have taken me seriously. Luckily, we don’t have one of those doctors – we have Rebecca Partridge! I am grateful that we have a hospital like Seattle Children’s in our area to care for our children. Grateful for the awareness that it could always be worse. And grateful for the resiliency of my son. We already know he is a fighter. It’s now time for us to stand together and tackle this terrible thing head on. Just like we have always done. Just like we always will. Together.

Many people say to us “let us know if you need anything”. We don’t always know what to ask for or how to ask for it. But today I am telling you we need you. I am asking for your love and support. Eli needs your prayers. Our family needs strength. There is a Jewish Proverb that says I ask not for a lighter burden, but for broader shoulders. Chuck and I are staying strong for our family. We are carrying the burdens the best we know how. But each new setback weakens us. Your prayers, love, and support strengthen our family in ways I cannot describe. Please don’t give up on us – we need you and, most importantly, Eli needs you.

xoxo Melanie

Here’s a few pictures:

He is NOT happy about the EEG
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He looks so cute in the tiny hospital gown!
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Our beautiful boy and his amazing smile
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My Super Hero
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Rest in Peace Robert Ethan Saylor

“I want my mommy”.

I can’t stop thinking about those words. That was said to be one of the last sentences spoken by Robert Ethan Saylor, a young man with Down syndrome who died in Maryland this past January. For those unfamiliar with this story you can read about it here. For those less inclined to click on a link, here’s a synopsis: Robert and his support person went to see a movie. The movie ended and he wanted to watch it again. His aide went to get the car. Movie theater staff approached Mr. Saylor and told him to pay for the next showing or leave. He did neither. The staff called for security. The rest is extremely hard for me to write about. Three off duty police officers, who were working as mall security, approached Robert. They told him he needed to leave. He was combative. They handcuffed him. At some point, he ended up face down while still handcuffed. He cried out for his mom. The police officers then realized he was suffering a “medical emergency” and released the handcuffs to administer first aid. It was too late. Robert Ethan Saylor asphyxiated. He died at the hospital. The medical examiner listed the cause of death as homicide caused by asphyxiation. This past week, a grand jury decided that the police were not liable for that homicide. Recent media reports have suggested that a heart defect, obesity, and Down syndrome were the real culprits. Sorry, but that is just wrong. He died because he was held face down into the ground and couldn’t breathe. This young man died at the hands of those off duty police officers.

I’ve thought about this post for awhile. I’ve felt very conflicted. This has brought up a lot of buried feelings about Down syndrome and my son’s future because of it. I am sad.

“I want my mommy”. She was on her way. Someone alerted her knowing she would be the one who could diffuse the situation. There are reports that she was literally minutes from the scene.

Do I think these three men set out to kill a young man with Down syndrome? I do not. Do I think they could have handled the situation differently given the fact that Mr. Saylor had Down syndrome? Yes. You cannot treat each individual “by the book”. Police officers are taught to react to the situation at hand. Robert was probably scared and confused. It was said he didn’t like to be touched. The situation was sure to escalate after they laid hands on him. Why didn’t they just back off and wait for his mother or let his support person step in? I’ve heard it numerous times since the grand jury found the police officers not liable – more training is needed. More training? Maybe – but I have to ask – do these people, who were sworn to serve and protect the citizens of Frederick County, need training on how to handle a non-paying movie goer?? Maybe not specifically but I’m quite certain common sense should tell them that handcuffing and putting someone facedown on the ground over a movie ticket is excessive force.

I’m guessing those advising for more training mean training in handling those with special needs. Herein lies the problem. This whole situation has brought up an ongoing debate in my head that I just can’t let go of. I’ve spent most of the past 5 months telling you how Eli is more alike than different. I’ve asked you not to treat him differently. Yet, I look at the sad truth surrounding this tragedy and I realize you have to treat a person with Down syndrome differently sometimes. I am so conflicted about that statement. Should people with disabilities get special treatment? Sometimes, yes. I’m not saying Mr. Saylor should have been allowed to stay in the movie theater for free. But to be removed with such force? That seems a little excessive for anybody. It was a $10 movie ticket.

The should haves, could haves, and would haves are useless at this point. Action needs to be taken to make sure this doesn’t happen again. If more training is needed in Frederick County as to how to handle those with special needs – do it. Maybe add in some compassion and sensitivity training as well.

What really makes me sad about the coverage of this story is that I only know about it because I have a son who has Down syndrome. It has been written about and talked about amongst the Down syndrome advocacy groups I follow. Other parents of children with special needs have blogged about it. But did you know about it? I’m guessing not. Why isn’t there a public outrage outside of the Down syndrome community? A young man was killed over a $10 movie ticket. He was mishandled by police. He happened to have Down syndrome. Does that make it more ok? Is his life not seen as valuable too? Human beings should be treated equally when it comes to compassion, understanding, and love.

My prayers go out to Robert Saylor’s family and the community that mourns for him.

There is a petition on Change.org calling for further review by an outside agency of the Robert Ethan Saylor case. Please consider signing it here.