The Letter I Wrote My Son When He Got an Autism Diagnosis


To my son,

I don’t know how to start, as there are a lot of things that are bothering me so much nowadays, especially from the time we learned your condition, or as it’s medically right to be called, your disorder. For a while, I tried to divert my observations into exaggerations, but I knew in my heart something wasn’t right. You’re somehow more special than I expected.

Let me come back from the day that I learned that I was pregnant with you. As was the case with your sister, I never expected you, but I dearly learned to love you from the time I knew that you were there inside me. There is nothing that I can compare to the time I heard your heartbeat. It was so strong, telling me how excited you were to finally meet me. As far as I remember, everything was pretty normal from the time I conceived you until birth. You have always been quiet, and I barely had any discomfort.

My labor with you was very short. I just needed to push a couple of times and there you were, crying too loudly because, for the first time, you were apart from me. After a few minutes, you were laid on my body and I will never, ever forget the first time I touched your small hands. You had so much hair then. And from the time you heard my voice assuring you that you’re with me, you just stopped crying.

As early as your first and second months, you were diagnosed with asthma. Most of the time, we’re visiting your doctor and you are even being hospitalized for at least a couple of days. We usually can’t easily bring you out of the house, as you can get irritated with a sudden change in weather and even the temperature of your surroundings. You don’t have any idea how much it kills me to see you in pain or having difficulty breathing. You even learned to use your nebulizer before you even learned to walk because you know that this is the only thing that can help you to lessen your discomfort.

Lately, you’ve been well. I think you’ve been coping better with your asthma, plus you are gaining weight and it’s been a while since we visited your closest friend, your pediatrician. But there is something that I’ve been discovering about you day after day… you have difficulty walking most of the time. You do stumble as if the bones in your feet are not strong enough. I haven’t heard you using any clear words except the word “Ma.” Most of the time, you make continuous and identical sounds and honestly, we can’t understand what it means. You move your head as if it’s spinning without worrying about bumping your head somewhere.

Most of the time, you play on your own. You hate attention, especially from an unfamiliar face. You even resist looking at them in their eyes. It’s been almost a year since I started looking for answers on what might be your condition and recently, after talking with different people who can help, they suspect that you might be within the spectrum. It was hard to comprehend. The first question was, did I do anything to you to be like this or is there anything that I should have done that I did not do?

I love you and I will always love you every day of my life. I will not be able to promise you paradise, as this world is full of cruelties. But I will make sure that I will be forever on your side. We will be in this together with your dad and your sister and especially God. I want you to know that you’re precious, very special in a lot of ways.

Let me tell you that every day will always be an extraordinary day to me every time I get to look into your eyes, even if you were not able to tell me anything, not even a word. But your eyes say so much, like that you do miss me during the time I am away and how much you love me. It always makes me feel so much of gratitude, the way you look into my eyes.

I will forever love you and I will do everything to help you and guide you. I know we have a long way to go. It’s just a start, but I pledge to always be with you through every part until you reach the best as you can be. I love you.

Love,

Mommy

(I wrote this letter for my son, Aeron, in 2009, the time when he was diagnosed. One reason why I wrote this letter is that I believe that one day he will be able to read this. He will get a chance to be a well-functioning child and even adult.)

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How to Talk to ‘Special’ Parents


This would be one of those touchy subjects that people try to avoid. It is one of those proverbial elephants in the living room. Please know I’m not writing to offend. I’m writing to help others understand how to treat those who may have children that are a bit different than your child or my child.

First, we should consult Webster… such a smart chap.

Special: Adjective

1. Better, greater or otherwise different from what is usual.

2. Belonging specifically to particular person or place.

3. Designed or organized for a particular person or place.

WAIT! Special seems like a great word! Don’t tell me you are offended, Mrs. Autism Mama?!

Offended, not exactly. Cringing and feeling the hair on the back of my neck stand up, yes.

I’m not sure what it is, but I think it is just a bad phrase. We don’t look at someone and say, “God only gives cancer to special people.” So why in the world would we say it to the parent of an autistic child or the parent of a child with cerebral palsy, or Down syndrome? I lost my daughter in 2004 after she battled Congenital Heart Disease for nine long months. I heard similar phrases then.

“You and Allen are special people and God gave you a special child.” (Insert sigh here.) We are not special at all. We pushed through a horrible situation and we had LOADS of support and help. In private, the raw side of pain was ever present. The same applies today.

“God will not give you more than you can bear.” I love the Lord Jesus with all my heart, and I believe this statement… but it is not a comfort when walking in the darkness.

“You are so strong and courageous.” HAHAHAHA (sorry). I have a mad poker face. Anyone who knows me realizes that it is the face I wear 99 percent of the time. My strong face and what is happening inside me are two totally different things. I am probably one of the most emotionally drained individuals you will ever meet… but thanks to God, I managed then and I’m managing now.

Being the parent of a child with special needs is hard, people.

I don’t know if I will ever be able to put into words how hard it is seeing your child struggle. I understand that it is nearly impossible to understand the hardship of being this type of parent when you haven’t lived it. I get it. I don’t expect you to understand, but I do expect you to think before you speak. I do expect you to thank God every day for your perfectly typical child and not complain about how much they talk or annoy you. I do expect you to do research on autism rather than assume. And please, for the love of all things good and holy, do not tell me that my son acts exactly like Sally Jo’s son…. and oh yeah, he is 18 years old now and still doesn’t speak. So GOOD LUCK.

I do expect you to offer prayers rather than flimsy statements. I do expect you to be a friend if you truly are one. I don’t discount other struggles. I don’t think my struggle is harder than the struggle of someone watching their Mom die of some incurable disease. Trials are hard when they are happening, no matter what the situation. However, when your child is involved, it is truly heartbreaking. When you are raising a child with special needs, the future is terrifying and no amount of “special” parenting will take that fear away.

So what is the solution? The solution is simple. Be real. Tell the parents of these children what a good job they they are doing. Encourage them. Pray for them, frequently. More than that… pray for the child. Make these parents smile and laugh. Read about autism or the type of therapy the child is doing and educate yourself. Learn what makes the child happy and involve them. The parent and child will love you unconditionally for this simple deed.

Special needs parents are not special at all. They are simply parents. Can their road be tough? Absolutely. Just remember we are dealing with it. We have good days and bad days, just like others. We need your support, love and understanding. In reality, those are things that help us survive and thrive.

Special needs parents probably feel less special than you will ever imagine. They want their child to be loved, accepted, healed and helped. Their minds are consumed with the child or children they are caring for and the only thing driving them in most cases is the motherly instinct to help their child be all he/she can be considering the disability or syndrome.

This post originally appeared on Walking With Drake.

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Watch This Nurse Have the Sweetest Reaction to Her Patient’s Surprise Recovery


This is (more) proof that nurses care deeply about their patients.

The video below, posted to YouTube last week, shows a patient named Bailey with her favorite nurse. Bailey experienced complete paralysis from the waist down for 11 days with no explanation as to its cause, according to the YouTube video.

When Bailey suddenly started walking again, she decided to surprise her nurse with the good news.

Watch her sweet reaction in the video below: 

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The Week We Celebrated Halloween, Christmas and My Son’s Birthday


Three and a half years ago, my son, Ethan, was diagnosed at the age of 21 months with high risk acute lymphoblastic leukemia (ALL). As you can imagine, our world stopped. We had just found out three days earlier that I was pregnant with our sixth baby. Life as we knew it was to become one of hospitals, pokes, spinal taps, chemo, blood transfusions and on and on and on.

Our sweet little boy had to go through more than I could ever imagine, but he did so with a smile on his face. He endured two relapses, a bone marrow transplant and three experimental treatments when “normal” protocol ran out. Through all of this, Ethan and our family were on the receiving end of hundreds of acts of kindness. We benefited from meals (people brought over at least 100), financial donations, yard work, house work, cards, phone calls, gifts, visitors and many other things. We felt truly blessed. However, we had yet to see how generous people could be. After three months of trying experimental treatments in Seattle (our family lives in Utah), we found out our Ethan had run out of options. He was put on hospice and given only a few weeks to live.

It was October, and Ethan was looking forward to the holidays and his birthday in November. My husband and I decided to give those to him and to our family one last time — all in the same week.

On October 21st, we set out for trick-or-treating. A dear friend took flyers around to our neighbors asking them to be prepared for our family. A local news station found out and came to cover our supportive neighbors. A local charity made up of professional mascots came to make the rounds with us. It was an amazing night.

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dnews HolidayEthan

On October 22nd, we stripped our house of Halloween decorations and put up our Christmas tree along with the rest of our Christmas decorations.

Ethan 11 (1) On October 23rd, we were to celebrate his birthday. By this point, news of our week-long celebrations had hit the media and spread its way across the world. We began receiving packages and cards from across the United States and from other countries. People throughout our community banned together for our sweet boy. We had a parade with many participating — local police, Fantasy Con characters, a local Airsoft company and so many others. He was knighted, got to sit on a police motorcycle and met some of his favorite superheroes! The day also included custom-made cake and many presents and cards.

October 24th was our “Christmas Eve.” We were greeted that evening by hundreds of carolers on our front lawn, complete with a live nativity scene. Santa Claus and Mrs Claus arrived in a fire truck and took our family for a ride. After a private moment with Santa Claus, we went on a wagon ride around our neighborhood to see Christmas lights that our neighbors had put up early. We came home to literally hundreds of presents scattered throughout our home.

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On October 25th, we celebrated a private Christmas as a family. Soon after gifts were opened, Ethan got very sick. He passed away three days later.

Some would say that this was an incredible act of kindness for an incredible little boy, which it was. However, it was more than that. Those are memories that will never be replaced. Memories that I cling to six months later.

That week restored my faith in humanity. It helped me see how many good people there are throughout the world.

For one week, the world stopped (at least it seemed like it did to us) to honor one special boy in his last moments on earth. That is incredible. That is love.

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The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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The Moment My Nurse Became My Hero


Dear Nurse,

The first words I think you deserve the most are “thank you.” The list of everything I am grateful for would fill a 200-page book. So I thought I should tell you some of the things that make you stand out from so many others in your field.

Hearing your voice as you walked in the room to say “hi” on your day off after a meeting brought a big smile to my tear-stained face. Not many nurses would do that for patients on days when they’re not required to be taking care of them. But you didn’t stop there. I know that Patient Controlled Analgesia (PCA) pump was a pain in the butt, but you never showed the frustration that I’m sure it brought with it. Speaking of frustrations, those veins of mine… thank you for always believing me when I say they’re going bad (I’ve yet to be wrong) and calling the IV team one to two times per shift.

I know coming in every hour to give me some type of medicine was probably tiring, but it was very much appreciated. The fact that we always both requested each other during your shifts made us a pretty great team.

I’m sorry for the person I turned into while on such a high dose of those steroids; I think we both know that’s not the normal me. But thank you for taking the time to get down to eye level and ask what you could do to help me. Thank you, once again, for advocating for me and reaching out to the doctors after I had already attempted talking to the doctors about my feeding tube being messed up. Thank you for getting the ball rolling so that I could have it replaced.

I truly loved and enjoyed hearing all the stories you had to tell me about things outside of the hospital, like your puppies and how they’re doing, because, for once, it makes me forget about “On a scale of 1-10, how’s your pain?” I can’t tell you how wonderful it was for you to take the time to actually wash my hair with real water and real shampoo and not the shower caps. Not once has any other nurse offered me that option, but you did it without even me asking. And I can’t tell you how great it felt to feel somewhat normal.

This next part is probably going to make me tear up, but it’s worth writing about. That Monday started off like any other Monday had been during the last couple Mondays in the hospital. You’re bright smile came shining in with my 8 o’clock meds, we filled each other in on the weekend, and you went to eat your second breakfast. Physical therapists came and saw how much I had declined over the weekend, and I told you after my next dose of pain meds I wanted to try again. So we did, and after getting halfway to the nurses’s station even you were surprised at how bad my balance was that day, and I mentioned being really dizzy. So back to the room we went.

That’s when you noticed the my left pupil was dilated and unresponsive. I could tell you were freaking out yet trying to keep calm, and I appreciated that because it kept me calm. You rubbing my shoulder telling me I was going to be okay really meant a lot. I remember you calling the ACT team and a bunch of doctors suddenly standing all around me doing a bunch of tests and bright lights. I was dizzy, had a bad headache and severe nausea. The next thing I know I was being sent straight to the Pediatric Intensive Care Unit, and you went going with me.

Thank you for coming with me so I had a familiar face, and a comforting hand. Thank you for settling me in to the PICU, and then coming again to check on me after your shift. Once again, the next day before your shift, thank you for coming into check on me.

Thank you for being a nurse, a friend, an advocate, a lifesaver, a hero and everything in one. Don’t ever doubt yourself, because I thank you, and every patient you care for though they may not say it, is thankful and grateful, and lucky to have you as a nurse.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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How My Daughter Is Judged When People Don’t Know She Has Asperger’s


So this is going to be emotional for me, a personal and probably a poorly articulated post. I feel the need to write this for two reasons: therapy (at least for me) and awareness.

A few months ago, Jessica was diagnosed with Asperger’s syndrome. (And if you are wondering, I did ask Jessica’s permission before I posted this!)

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Although it was a massive shock (to put it mildly), it was also like the light switch went on. The last 12 years flashed in front of my eyes, and they all made so much sense.

For Jessica, too, at last she knows why she feels so different to her peers, why the concept of friendship eludes her, why she struggles with the complexity of socially acceptable and unacceptable behaviors that can vary from one country to another, from one school to another, from one family to another, even from one person to another.

The point is, when I first found out, my brain did what it does best: research and see what you can do to help. And I did.

My heart, on the other hand, is still lagging behind — way behind. My other daughter has Down syndrome. You see, when children have Down syndrome, say, or any other “visible” difficulties, the “advantage” is that you know from the time they are born and can put everything in place for that special journey.

However, when it comes to children with difficulties that are not visible, well, they don’t get away with much. Not with parents, they don’t. At least not until parents realize it is not just a personality trait, or a phase they are going through and will grow out of, or “the middle child syndrome,” or because she has a sibling with special needs, or  because we’ve moved so many times, or any excuse under the sun. Sometimes, any excuse is better than the fact that something is not quite “right” with your child.

And in that time capsule, from the time your child is born and you finally find out there is a reason why they are the way they are, there can be so much tension, so much frustration and so many misunderstandings from and between the parents and their child. So much wasted time and energy. Especially when that child is doing well at school and seems to just get on with everything that is thrown at her! If you’re lucky, that time capsule is short.

Bad parenting will always be the first culprit to that awkward sentence, that awkward behavior or that social slip. Why? Because the rest of the world can’t see any visible signs that that child is actually different. Just different.

You can’t blame other people for passing judgment. We are all guilty of it at one time or another and, to be honest, I do believe that bad parenting is to be blamed for a lot of children’s socially unacceptable behaviors. We are only human.

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All I’m saying is, please try to keep an open mind. Not just with other children (or adults) who are not visibly different, but also with your own children. I wish I had noticed earlier that Jessica was actually different and not just a bit difficult.

The diagnosis didn’t change Jessica. She doesn’t need to be changed; she is a wonderful person with a beautiful soul. What the diagnosis did change was tremendous and so wonderful: the dynamics of the relationship she has with us is completely revolutionized. We finally get her, and that’s a relief not only for us but for her! There is much less tension and frustration at home. As far as she is concerned, she now understands why she feels like an alien at times and that there are a lot of people just like her in our world and that everything will be just fine, everything will be just fine…

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