Dear Samual (part one)

I want to start a new section on this blog. It will be a collection of letters that I write specifically to Samual. I won't read them to him right now, but at some point when he reads this blog I want him to read them and know they are specifically for him. So without further ado...

Dear Samual,
In FIVE DAYS you will be three years old! My heart is beating and my brain is wild as I think about it. You have been alive for THREE YEARS and I can't believe it. See when you have your first child, EVERYONE tells you how fast they grow. I think it's like a rule that everyone gawks at the huge belly and then informs you that the baby will be 18 before you can bat an eyelash. In fact I heard it so many times that I went numb to it. I had no idea how right all these people would be. It feels like I blinked and suddenly you are three and you have grown from that tiny baby I grew in my belly, into a spunky little boy.

If you look closely you can see the spot where you would kick me and your foot would make my belly uneven. (photo courtesy of Liv Allen)

You my son have grown so much! You have grown into your own person with your own personality and sense of self. In fact sometimes I think, that at not yet three, you are more sure of your self than I am at twenty-seven.

I love you so very very much. Actually I can't even put into words how much I love you, as I don't know of any words that could explain it. When you were born, I was told that I would look at you and just fall in love. Those people were wrong because that's not how it happened to you and I. We took our time to get to know each other and eventually, over time we've become a team and I know that the love we have for each other couldn't be broken ever. It's an unconditional love that no other two people could have, because it's ours and no one else's.

The day you were born will live in my memory as the worst and best day of my life. I had no idea what to do with you but we learned together and I am so happy we did.  

When I think about what I love most about you, I instantly think of your passion. I would love to be half as passionate as you are. And you're not just passionate about one thing either, you are passionate about everything you do. My prayer is that you never lose that passion and joy, and over your life time, God uses that passion in you for his kingdom.

You are also one of the funniest people I know. You don't laugh all the time but usually when you do it is because you make yourself laugh. I've met so few people who can laugh at themselves the way you do. It's as if you just know how silly you are and don't care what anyone else thinks. It's this silliness that makes me enjoy each day with you. I don't know what I would do without your humor and joy.

This cheesy smile is my favorite

Oh my dear son, you should also know how stubborn you are. In fact the only person I've ever met who is more stubborn than you is your father. I pray, not that you lose your stubbornness, but that you learn to utilize it for good. I pray that you continue to use your stubbornness and passion for good in your life, and the life of others.

This is one of your best expressions. It's your "I don't think so" expression and as not funny as it is, I almost always laugh.

Despite your social misgivings you are compassionate for others. The way you love is beyond compare with others and I know this is a trait that is uniquely yours. When God formed you in my womb he formed in you that compassion and heart because I know you didn't get it from your father or me. I've spent my whole life learning to be compassionate, but you seem to have been born with it. You always seem to know the right moment to shower others with love and the way you show concern for others, even complete strangers brings me so much joy. I pray often that you do not become hardened by the world and lose this wonderful piece of your personality. I know that sometimes there is cruelty in the world but if you continue to face it with such love and compassion, you will accomplish great things.

My most favorite photo ever of you and I

Samual, you are the most amazing person I have ever met and I don't say this just because you are my son. I am told often by others how wonderful you are. You bring so many people joy and happiness and I don't know a person who has met you, that hasn't fallen in love with you.  Your big blue eyes and contagious smile are welcoming and bright. The world doesn't always understand you and I know you don't always understand it but the world is truly a better place with you in it.

I always thought that saying was silly "I couldn't imagine my world without you." It never made sense to me, because I did live in a world before you and I was "fine". However now that I know you and now that I have you, I realize my life was never quite complete before you were in it. You make my world complete and happier and I am a better person for having you in my life.

To wrap this up I want you to know that you are amazing and while we may not always agree or understand each other, I will always fight for you. I will care for you. And no matter what I was always love you.

All my love,
Mommy

Say & Boys

In the fall of 2011 I got a haircut. It wasn't the best haircut, but I was happy with it.
Why do I remember a haircut from two years ago?
Because that was the day I met my best friend, Shorty.

She didn't cut my hair that day but it was the day I met her.  Over time we gradually grew closer, saying hi to each other at work, learning our sons were close in age and setting up a play date.

The first meeting of say & boys

Over time Shorty and I hung out more and more and brought the boys together more and more. We would talk about how the boys would be best friends and how they would grow up together. We would joke about the teen years that would come some day and how the boys would be as they grew up.

What I didn't know at the time of these jokes is how much of the future we were predicting.
A bond was formed that few people can quite understand. These two became more than best friends.

They became brothers.

Despite Samual's social and sensory issues, they bonded. They fought (fight), hug and cuddle. They laugh together and piss each other off. They have taught each other and they've grown together and despite what the world says about Autism and socialization, these two have formed an unbreakable bond that Samual doesn't have with anyone else.

My heart loves seeing them grow together as they sing in unison, hug wrestle and enjoy a bowl of popcorn and then giggle hysterically together as I vacuum it up. They have truly taught me what friendship is about. O (boys) doesn't see Samual's (say) Autism and Samual wouldn't care if O was developmentally delayed either. They just love each other, because they do and that's just how it is.

We could all learn a little bit from Say and Boys.

Peace & Love,

Fireman Sam

     Samual has many interests. However if I had to boil it down, his biggest interest is vehicles. It started out with cars and everything was a car. He has a tendency to overgeneralize until he knows the difference so every type of vehicle was a car. Then after a while he moved to cars and trucks and was obsessed with both. Next came trains and oh boy did he ever love trains. He even knows the names of most of the trains from Thomas and friends. After trains came airplanes which is where we are now. However he still loves car and trucks and trains but airplanes get him the most excited.

     It was a Monday and a holiday (Labor day) so with out much else to do we decided to go visit the fire station and see if they would let Samual see the trucks. When we drove in we were a bit surprised to see at least 10 trucks lined on the streets and all around the fire station. Samual took notice and was beyond excited. I thought he was going to jump out of his seat.

     I walked up to the station first to ask if it would be okay and to explain Samual's special needs so they were aware if he was upset or screaming. They were so kind and understanding and told me to bring him up. I motioned to Jd who was waiting in the car with him. Jd got Samual out of the car and helped him grab his fire truck toy and before he could get a decent grip on his hand Samual started to run as fast as his little legs would carry him. The smile on his face is one I will never forget. When he got to the top of the driveway into the station it was like he was going to pass out from pure excitement.

He had this look on his face most of the time we were there.

     We had two men helping up, a paramedic and a fireman. They were both kinder than I could have imagined. They asked before they did anything such as turning on the lights on the truck. They asked about his diagnosis but didn't push for answers. The fireman got down to Samual's level and played with his firetruck with him. Samual loved that.

     At the end of our visit they informed us that they had been having a city wide meeting and soon there would be a lot of people filing out and ready to leave. This was our cue to go as Samual doesn't like crowds but they were by no means pushing us out. It felt like they were letting us know for Samual's sake. We waited a moment or two longer and I watched as men were filing out from inside the building. It struck me that they all stayed close to the walls and the outside of the trucks while we were on the inside. As we were leaving the men smiled and nodded and I felt so calm and at peace. I don't know if they were told there was a boy with special needs who couldn't be around large groups or what but they way they acted made my heart melt and I left with tears of joy in my eyes.

     I can't say thank you enough to the Tulsa Fire Department and the two men who opened their hearts to Samual that day. Samual has two new heroes and so do I.

Peace & Love,

Why?

     Every morning Samual wakes up, grabs his blanket (or as he calls it, bacon) and his pillow and climbs into bed with me to wake me up. We usually talk for a few minutes, he yells at me to wake up and then we play a game of how long can mommy lay there motionless before Samual decides he's had enough. It's not a perfect wake up routine but we're used to it and it works.

     Samual usually has sensory issues in the morning where his body takes a bit to adjust to being awake. Sometimes he handles these very well and others not so much. One of the ways he copes with his sensory issues is by pinching others. It is not usually painful and it is not meant to be either. He simply grabs another persons skin, pinches lightly and then tenses up his entire body. I can't explain the mechanics of it but I know it helps him to release some of that built up tension in his body. Although it is not usually painful we are trying to correct the behavior so that he does not accidentally hurt someone and we want to teach him other ways to cope with his sensory issues.

With all that explained I bring you this mornings conversation:

Me: Sami please don't pinch
Samual: Why?
Me: Oh, it's not nice buddy.
Samual: Not nice? why?
Me: Because it hurts people
Samual: hurts? why?
Me: Why? Oh...uh...I don't know why it hurts buddy.
Samual: okay wake up mommy.

He has never used the word why before. I was so excited but way too tired to try to explain why pinching hurts. It's amazing how far we've come in the last year or so. I am so excited to see what new things he will learn every day.

Samual enjoying breakfast and dragon show this morning. 

We get the results of his autism tests today. Will write on that later.


Peace & Love,

The journey to a diagnosis.

     The first time I heard "your child may have Autism" I cried hysterically. I threw a fit, I yelled and hit things, I cried to my parents and both of Samual's dads. I basically lost it. Of course my son will never know any of that unless he some day reads this blog. I coped with the possibility of Autism, the way I needed to cope. No one ever expects to hear those five words and everyone deals with them differently.

     In March of this year Samual's therapists started to mention testing more and more often. It went from being mentioned once or twice over 8 months to being mentioned every couple weeks or even sometimes, many times in one week. Personally I was not ready for this at all however I knew the conversation about testing needed to take place so Justin and I sat down to compromise and after a long discussion we decided to start the process in July. When July came my stomach got knots and I knew I wasn't ready but the time was upon us and it was important that we start it as the process takes several months.

     On Monday of last week Justin, Jd and I all went to the pediatric psychology office together. We were funneled into a tiny room and all sat on a couch together to talk about our boy. My heart raced and my mouth did too. We answered every question and waited for answers.

     My understanding of this initial appointment was to determine whether further testing was needed. As in does he have the markers for Autism or not?

     The appointment ended and the psychologist let us know that Samual would need to be tested. He will go through a 2-3 hour testing period while Justin and I fill out paperwork and answer further questions. A month after being tested Samual will receive a diagnosis. The psychologist did say that its possible Samual won't be diagnosed but when I asked what the likely hood of an Autism diagnosis was he said "extremely likely." However he did ensure me that without seeing Samual himself he personally can't give me a diagnosis right now.

     Myself and both of Samual's dads seemed to walk away feeling validated about everything we have done up to this point. It was made very clear that we are ahead of the curve. Many families walk in there with no plan in place and in the very beginning of everything whereas we have been working with Samual for a year and began this at a very young age in his life.

     In December of this year we will have a diagnosis and as much as I want to say it doesn't matter, it does. Will it change how I feel about my son? ABSOLUTELY NOT!!! Will it change how others treat him? I hope not. Will it change anything at all? Somethings but not much. So why does it matter? I wish I could answer that question but I can't right now because I don't know how.

     I love my son and I am so proud of all of the new things he is accomplishing and I am so happy with how much he improves every day. Samual is my pride and joy and I only want the best life for him that is possible.

peace and love,
Jacquie

So many words.

     I am wildly amazed whenever I step back for a moment and look at the progress Sami has made.

     As a family with a special needs child I think sometimes we get stuck in the day to day. We live by a schedule that is rarely changed or altered and as the schedule keeper I can tell you what is going to happen any given day or time. We live by the schedule and because of this it can be hard to notice the small changes. We focus so much on keeping things the same that we forget that Sami is changing things himself.

     This week we were challenged by Sami's speech therapist to make a list of every word Samual uses and the way he uses it such as pronunciation, context and frequency of use. The list started slow with 20 words and as his father and I went on with the list our mouths began to drop. Sami now has 66 words and we still keep adding more to the list as we remember or hear them. At his age he is expected to have more words and use them more appropriately however where he is now compared to where we started is beyond what I can explain. When we give the list to his speech therapist she will be able to go over it and more adequately give us an idea of where Sami is in his speech capabilities. I am also hoping this will help her be able to more adequately target what Sami is struggling with most.

     I am constantly amazed when I look back to a year ago when we got the diagnosis and how delayed Sami was. He had about 5 words and used none of them properly. Physical contact was unbearable, even small hugs or kisses. Meltdowns were so often that I cannot accurately say how often they were.  Before therapy life was really hard and we had no answers and no idea what we were doing.

     It is great pleasure that I can report that Sami now makes eye contact, allows a few seconds at a time of physical contact, allows people to be within "his space", and even initiate hugs and kisses. Meltdowns still occur quite often however they are not as prolonged as in the beginning and we have plans in place to help him cope with them. Sami has also made a friend and allows his friend to play with him and they even communicate, play wrestle and share (as much as two toddlers can).

     The joy I have seeing my sons progress is indescribable and I am so excited to see what other progresses we will see in the future.

 Sami loves all things trains 

Carrots are Sami's favorite snack these days.

   

the little girl in glasses

     I sat quietly, smiling as much as I could, watching my child struggle. There is no part of me that enjoys watching my child struggle but as any mother knows, at some point or another you have to let them do things for themselves.

     As we pulled up to McDonald's  I reveled at how fun it would be for Sami to get to play in the play place with other children. What did not occur to me until he was actually trying to play was that it would be physically difficult for him. The steps were tall and he has yet to learn to lift his leg very high to be able to climb steps such as these. He got up the first two steps which were small and easy but the third one was impossible. He tried his best, however he could not manage to climb and the other children had little patience  for a toddler who couldn't climb like them. He would get knocked over and pushed aside and still, his spirit and drive was not broken. The persistence of my child amazes me in times like these.

     My heart was breaking watch the struggle and I was ready to go. I knew Sami was by no means ready to give up, however I was. I couldn't go in there with him and I couldn't help him and quite frankly, watching the situation was bringing me near to tears. Then it happened, the moment that restored my faith in humanity. The  young girl in a purple shirt and glasses climbed in the play place. For the sake of the story and the lack of her actual name, we will call her Angel.

     Honestly, I would never have noticed Angel except she wrapped her hand in my sons. My human nature started to kick in, about to tell her to let him go when my spirit calmed and I heard a voice say "wait". Sami did not flinch or become scared, he looked at her and she at him and instantly this stranger became my hero. She held his hand while simultaneously maneuvering him carefully up the next few steps. Angel could not have been much older than 7 or 8 but she carried him with such ease. She didn't force him nor did she push him, she guided him up the steps and through the tunnel. I ran over to watch my child and Angel go through the tunnel like they had been friends all their lives. I watched them climb into the slide and waited anxiously at the bottom of the slide, listening for any sign of trouble. As I crouched there, I wondered if she was going to simply push him or pull him behind her and what I saw will change my life forever.

      My child who has never been comfortable in tunnel slides but the look on his face as he came towards me was plastered with the largest smile I had seen in ages and right behind him was Angel with her arms wrapped around him, keeping him safe. When they got off the slide Sami gave her a smile and I told her thank you. Then, they went again, up the steps and through the tunnel, down the slide. In fact Angel took him 4 times as if she had no other reason to be there than to guide my child and help him.

     The fifth time the two of them ventured up, Angel decided to take Sami one step further and take him to the very top step, top tunnel and top slide. I wasn't sure this was a good idea but again I heard the voice telling me to wait, so I did. Just as they reached the top, Angels mother forced her to come down to the ground to get socks on. Angel obeyed hesitantly, making sure Sami made it safely in he tunnel. Jd, myself and a friend of ours tried to coax our friends daughter to help Sami to the slide but she was unable to help him as Sami refused to listen to her. Then, just as I was sure I was going to have to climb up myself and rescue him, Angel rushed in and up the steps and shortly after, both children flew towards me down the largest slide Sami has ever been on.

     I tried my best to explain to Angels mother how her daughter impacted me but sadly, I don't think she truly understood.

      Today a stranger became my hero. It is doubtful that I will ever see her again or know her real name but Angel restored my faith in humanity and my hope for future generations. You may never read this or fully understand it but THANK YOU Angel, you are my hero.

My son is NOT Adam Lanza

     It snowed today which meant all I wanted to do was sit on the couch, sip hot cider and read. While I wasn't able to do much of that during the day I did finally get the chance shortly before putting Sami to bed.I curled up with a warm blanket and my kindle while Sami watched his favorite before bed movie. I decided to waste the last few minutes before he goes to bed on facebook. Scrolling through, I notice that a SPD page I follow had shared an article that stated in bold letters "PLEASE DO NOT SHARE THIS ARTICLE". I saw a little blurb of what it was about and my heart started to beat faster. The one thing I have feared since December, Adam Lanza had sensory processing disorder.

     I opened the article and took a deep breathe as I started to read. Fear began to fill my mind and I began to run far too many thoughts through it at once.

 How many people have read this?

What are they thinking?

My son is not this man but how many think he could be?

What is this going to do to our community of SPD children?

What kind of publicity is this going to give us?

     Let me be clear, I know not every one will read that article and think badly of all SPD children. However I think back to so many times something horrible has happened in our society and immediately it turns to mental illness, race, religion, ect. Society often hates what they cannot understand and up until this moment, sensory processing disorder has been a silent illness.

     There are many in the community of sensory parents that have tried to spread awareness, myself included. We try to tell others and explain this neurological disorder however it has been mostly ignored. Now it will not be ignored. We're not going to be ignored anymore, but this is NOT the way any of us wanted for awareness to be spread.

      My son is my world, my whole world. The little boy I write about on this blog is the best thing that has ever happened to me. He makes me smile even when he's not smiling and even though I have to ask for every hug or kiss I receive, they are the best hugs and kisses in the world even if they last less than a second. My son rarely cuddle, nor does he appreciate being touched much. He is not the most social child on the planet and does revert into himself from time to time. Despite all this, my son brings joy to so many around him.

      Samual is not his disorder, just as any other sensory child or adult is not their disorder. Samual can become anything he wants, he can love anyone he wants and can do anything he wants. My son will be affected by many factors as he grows into a young man that have nothing to do with his disorder. He will be affected by the way his other parents and I raised him, by the way he is treated by peers, by the education he receives, by the events that occur in his life and many other factors. Samual is not his disorder, he is an accumulation of life events, love, friendships and so much more untold ventures along the way.

     Just as my son, is not his disorder, Adam Lanza was not his. I can not even begin to speculate who he was or why he did the horrible things he did, but I can be certain, his disorder did not cause him to act out in such a violent, tragic way in the same way that I am certain that my son is a wonderful joyful person.



   

We Live!

So it has been a hot minute since I have posted. We have had a ridiculously busy past few months and by some miracle everything is finally starting to slow down.

In October, Samual turned two, Jd turned 32 and a vast number of my family flocked to Oklahoma for our commitment ceremony. We were blessed to have my best friend join us and officiate the ceremony which was super exciting as we haven't seen him since Samual was 8 months old. We were also blessed to get to spend my sisters 21st birthday with her while she was here! Samual got to see many family members he hadn't seen in a long time and even though it was a little over stimulating, he did enjoy himself.

Samual at our ceremony

November was mostly a time to get ready for the holidays, clean up from October and Jd with lots of overtime and not much time at home. Ah the joy of working in retail during the holidays. Also in November, Samual's occupational therapist had her baby a whole month early! This did throw Samual off at first but he survived through it better than I thought he would. She and baby are both healthy and she is now back from maternity leave which I think makes Samual pretty happy.

Samual at the zoo. Putting his fingers in his ears is a sign he is over stimulated. 

December brought a multitude of busy and the beginning of the sick season. I got sick with bronchitis early on and Samual started to get terribly sick as well. He started to get a barking cough and it came on very quickly. Justin, N (Justins girlfriend) and I all rushed Samual to the hospital. He was diagnosed with croup and Samual was subjected to breathing treatments and an overnight stay at the hospital. I can honestly say that in this entire journey with Samual, that was the most helpless and defeated I have ever felt. About 2 weeks after being released, Samual was diagnosed with croup again but this time we were able to give him treatments at home.

December also happened to be a busy month of baby having in this family as Samual had 3 new baby cousins born in December. All 3 babies were born in different states within the same month so we haven't gotten to meet them all yet but Samual likes babies!

Christmas was wonderful and while Samual had some bumps in the road, he did love all the new toys. We tried our best to find him toys that would teach his purposeful play and I feel that we did fairly well. His occupational therapist is really pushing us to teach him purposeful play which will help him advance his imagination. To be honest I am still confused on all of this but it seems to be helping.

 He loved his play kitchen. We had it all set out for him to find in the morning. He was overjoyed. 

He has had some issues with wrapping paper in the past, we assume its a sensory issue so all his gifts came in bags this year. He loved opening each bag and finding something wonderful. 

A couple weeks ago, Samual had his evaluation for speech therapy. His therapist said he is making great strides in his social skills and has improved most in that skill. His speech itself is still very delayed as well as his language understanding, however his non verbal communication skills have improved a ton! He won't have an evaluation in Occupational therapy until late summer but his therapists agree that he is making improvements. The therapists and I have been discussing the right time to have Samual tested for Autism however I feel that a whole post in itself and I will post it fairly soon.

Samual saw a nutritionist last week to discuss his diet and what things may help him improve as well as getting him to eat a wide variety of foods. We started him on a multivitamin with Omega-3 and DHA and are trying to incorporate more healthy foods into his diet. So far I have been unable to incorporate the flax seed that was highly recommended but I am going to keep trying to find ways to add it in.

I am recommitting to updating this more often so there are less posts this long! For now, I will leave you with some favorite photos from the last few months.

 I just love this shot. 

 Our family Christmas Photo. 

 Samual and his best friend enjoy spaghetti-O's 

Samual and his best friend "O", exchanged Christmas gifts this year. It was quite adorable.