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. 

Samual is two!

     On Friday Samual turned two years old! Man oh man he's growing before our very eyes! On Saturday we had his second birthday party. I tried to keep it as sensory friendly as possible and I think it turned out quite well. Now I'll leave you with some photos for your viewing pleasure.

His first car! This gift was from his Nani, Papi, Uncle Andy and Aunt Mandy and was surely bought just to make me feel older. (kidding..maybe)

The pumpkin painting went a lot better than I had suspected. 

 Every time I turned around he had candy. At least he did alright with it.

He ate with a fork! This is one proud mama!

 The pinata scared him. I didn't expect that at all considering he loved it at home.

All the kids together with their pumpkins. It was an awesome time despite the cold. 

almost 2!

     I cannot even believe it! In less than a week my sensational little guy is going to be two! TWO!!!

     I keep thinking back to when he was first born and all the crazy that went on back then. I think about my pregnancy and how Samual was unlikely to make it at one point, how my body was fighting against him. I can't help but think about how there was a time that I wasn't sure my little baby would be here today. Here we are two year later and my little guy is here and so very very awesome.

     I look at him and cant help but think "its all worth it". He really is the light of my life and despite everything we've been through with his dad, moving away from family, meeting Jd, Samual's diagnosis and just getting through it all together, I know I have the best son ever. My life has truly been better because my life has been blessed with his life. Every meltdown and battle and every bit of craziness that goes on in our home is totally worth it.

     We are throwing him a birthday party the day after his birthday. I have planned out every detail to try to make it easier on him. We are having the party in a park to help with his issues of being around too many people in too small of a space. Being outside will also help Samual be able to walk away if he's too overwhelmed. We are also having games that Samual will enjoy as they use a lot of visual and touch activities. Jd and I are going to get Samual a sweater he has been wanting that is soft and large to help with his clothing issues. We are also getting him large puzzle pieces as per Samual's speech therapists suggestions. We are trying not to overwhelm him with too many new things as he is not one to enjoy a lot of new toys. He's very happy playing with the few things he does have.

     Honestly this whole birthday thing is overwhelming me, trying to make everything perfect for Samual. We are trying very hard to make it all work and still learning all of his sensory triggers and we are not perfect but we are going to give it our all and hope it all works out.

Until next time,

Kisses are the new hugs

     Over the last several months, a number of things have happened. I have changed my way of thinking and the way that I am dealing with all the changes. Samual has adapted more and more as I have made changes to help him cope better with our daily life and I honestly feel that finally understanding him is truly bringing us closer.

     Sometime around three weeks ago I was sitting on the couch watching a movie while Samual sat on the couch next to me. I see him struggling to get off the couch and run into his room. Seconds later Samual jumps on my lap laughing hysterically. He proceeds to climb on me and put his legs over my lap and grabs each side of my cheek and pulls my face into his. At first I thought he'd surely lost his mind as he rarely gets this close to anyone and he was still laughing hysterically. Suddenly he stops laughing and smacks his face into mine and begins to make a humming sound followed by pulling his face away again to laugh some more.

     Honestly, it took me a little longer than it should have to figure out what had possessed my son to do such an out of character thing. After the second time of doing his strange motions I realized he was giving me a kiss. I even began to chuckle a little as my silly boy was grabbing my face and pulling it to his again. As he gets closer, I hum as he does and then let out a rather loud "MUAH!" I seriously thought he was going to fall off of my lap as he threw himself backwards and laughed harder than I'd seen him laugh in ages. We continued this pattern 3 or 4 times more before he got bored and jumped off my lap to play in his room.

     Over the last several weeks hes begun to give kisses often, even kissing the neighbor girl at one point. Which I'm sure you can imagine I was mortified and laughing at the same time. My son the anti-cuddler has learned to kiss and he thinks he's so clever when he does it. Little does he know, it is the best thing ever for his mamma. I finally have a second of closeness with my son and he's initiated it.

Until next time,