Samuel and I: Our Autism Journey

I have been doing alot of reflection on our journey so far this past weekend.  One thing is for sure, I have never been left alone (even in my loneliest of time).  Even when nobody was there physically..emotionally and as I walked with Samuel into the unknown and many trial by fire or successs experiment, my Faith gave me the comfort, shoulder to cry on and held me up when I just wanted to give up.

When no human was there to check in, you continously check up. When I couldn’t see, you opened my inner eyes. When I couldn’t hear his voice, you assured me that with time…dedication..sacrifices…it will happen. When he will stay awake for days and I was clueless about what to do, you gave me the strength to still continue. When work and therapy time collided and I felt like I had to pick one over the other, you created a gap for me to walk through.

When I see him now….doing his own grocery, paying for it…asking for just the two of us to go for a walk….when he argues about every damn thing….when he calls to ask where I am….when he shows tender care towards his little sister…when he wrestles with his brother…..

I see all this as the fulfillment of my sacrifices and your strength in me. I see it as the evidence that just like yesterday was so cloudy and we walked through it successfully, so will tomorrow be successful. I see it that my fear today for the future may be valid but just like fear of yesterday, we will come out victorious.

#ThankfulMonday

#Goodness&Mercy

Yesterday, we had one of the heaviest rain I have seen in years and lucky for me😁, the boys and I found ourself in the middle of it all. I was prepared for what was about to happen….the screams, the panic, the cry, the covering of ears with so much fear, the grabbing of the wheel for me to stop…..I was scared to be honest because Samuel is stronger and bigger than me now. To say I wasn’t scared would be a lie….I was terrified.

Samuel had extreme fear of the weather, it could be the weather changing from light to dark, rain or sound of thunder….it was fearful for him. We always had to prepared for the battle when the time changes and 6pm now look like 9pm at night. It was years of battle

But yesterday, it was almost nothing. At some point he asked if a light that shined into the car was lightning but I was able to explain that it was the light from another car…..outside of that nothing else. So I asked Aaton, “Do you remember what Samuel use to do when it rains” Aaron said he didn’t remember. As we all know, Samuel has awesome memory so I asked him and he said “I didn’t like it. I use to be afraid”. So I asked how he was feeling, he said he was okay.

He was so excited about the rain. At one point when it was so heavy, the car was practically shaking, he brought his phone out to record and was disappointed when the rain slowed down.

When I see these moments…the glimpse into where we were years ago….3 years ago….even last year….I become grateful for God’s faithfulness…..for the strength in me….for his drive to overcome any obstacles in his way…..I love seeing more of Samuel emerge….. I love seeing him managing his sensory input and doing things his way.

He is an amazing young man. He keeps surprising me….BTW, my baby has hair coming out of his chin now……and one of my sisters said his voice is changing…..I AM NOT READY🙄

What a year!!! Covid came and decided to interrupt our process and routine. It practically threw all the plan I have in my head out the window.

It increased Samuel’s anxiety. He went into depression. He developed fear of being alone and for the first time, Samuel had to see a therapist. The year was tough but it came with victories.

Samuel finished grade 9 and passed ALL his courses. He got a D in one but the rest were As or Bs. To say I am proud of him is an understatement because he proved many wrong and surprised as well. My aim has never been for Samuel to get As or Bs, it’s for him to do his very best and he continue to do this day in and day out.

I am proud of all my kiddies. I am so blessed to be privileged to have them. Everyday, Samuel and his siblings teach me about myself; about life, about my limit, about my ability. They continue to elevate me above my imagination.

As we take a break, we continue to use the summer to be tutored in both English and Math. We continue to explore learning opportunities and we continue to expand our coast.

I am excited to see the challenges that grade 10 will throw our way. I am beyond proud of this young man. Congratulations Sam, you’re a Grade 9 graduate😁💃🏾💃🏾💃🏾

I received messages from someone recently about a movie or show on Neflix with the main actor living life with Autism and ….you guess it….his name is Samuel/Sam. The actor apparently has an amazing job and is doing well. I haven’t seen it…I don’t really watch alot of TV neither do I enjoy movies. Their thought process was to show Samuel that he too can have a professional career and make it financially.

When you have the urge to send parent information about what another person on the spectrum is doing so well….I need you to STOP. Whatever it is that you want to share with us, we have thought about it, we have accessed it, we have come to the realization that it’ll not happen….this is extremely important when you’re not close to the child or the person

With this said, was I upset? No, because I understand that it’s coming out of love and that this person has never met Samuel therefore, they don’t know him. They haven’t had the opportunity to see the ability in Samuel, they judge his person based on their knowledge of what Autism is…..folks forget the SPECTRUM in ASD.

As a parent, I believe we all receive blank canvas and we add baseline items to it for all our children. For all my children, the basic kindness and respect of people…the general basic that any good parent have. Then for each, I (and many parent) Tailor it to meet our children’s ability/personalities. Samuel’s canvas is full with many opportunities and many spaces for him to add more opportunities and abilities of his own.

I don’t have limitations for Samuel when it comes to what the future holds. I do believe that because of some symptoms of Autism, Samuel will do amazingly well in any career path he chooses. Do I know the career path Samuel may not excel in? Yes!! Samuel hate blood, and will take your eyeballs out at the site of needle so will he be a dr or nurse, I strongly doubt it but he continues to change my perspective.

Samuel is confident about his future because we have never set the bar for him. We have given him opportunity to push himself slightly outside of his comfort zone and we continue to walk with him every step of the way. The only thing is that we expect him to do his very best. This very best may not even meet the minimum standard in some people but that doesn’t move us. There are times when others standard may be lower than what we expect for Samuel.

If you’re ever concern about what the future holds for Samuel…Thank you. I know it’s from a place of love. I ask at that moment that you take a minutes and speaks words of encouragement or positivity into his future…..the univers/God will carry it to him.

There is one thing that is for sure….Samuel will do amazingly well….his future is guaranteed❤… he is well aware that he is my retirement plan and he has to fund my travel goals in my old age🤣🤣

SHALOM💟

“Mum, you know you can ask me to come and stay in your room”

“Samuel, do you want to stay in the room with me”

“Sure”

Aaron has moved to his room and Tiara is asleep, my moment to catch up with work also lead me to my room leaving Samuel by himself. The constant fear of the unknown has been a battle that we have been going through for the last few months…we tried therapy but it hasn’t worked. So when Samuel asked about me needing him to stay in my room, I knew it was because of the fear of being alone.

Samuel fear being on any floor of the house alone. When I’m busy Aaron has to be my backup resource (Honestly, sibling of any child with any form of disability need some forms of award) or at times, Grandma Jane will walk with him to grab food in the pantry (fear of being in the room alone). This battle has gone on for too long, I am without an idea of how to resolve it, it seems like we will need to ride this one out.

This is not our first rodeo with extreme fear but this has produce the least amount of meltdowns so in a way, I am super grateful for some form of maturity on my part as well as his. However, I am ready to see it go, I hate hearing fear in his voice, I hate having him rely on the presence of another human being.

In the middle of a battle or a setback, I can never loose focus of how far we have come. Most importantly, like the battles in the past, this too shall pass.

Regardless of how strong the wind of life blows, we remain standing.

Those that know me are aware of my struggle this past few months and of course, I am in a better space now. But only few are aware of Samuel’s struggles.

Teenage season is a difficult season to navigate through even for the best of us. For individuals living life with developmental disabilities, it can be even more challenging. Samuel has not been totally spared.

He is a smart kid that knows how to research and navigate through the WWW. Samuel has been doing alot of search on his disability that i don’t even speak much of…..ADHD. As he searches through the net, he became fixated on the negative side of ADHD. The negative thought consumed him and he started experiencing extreme sadness.

It’s one thing to deal with challenges yourself, it’s another to have your child on that Journey. Samuel will be okay, Samuel is speaking with a therapist that he has developed some level of comfort with. Samuel will be okay.

Autism is a lifelong Journey, so is ADHD, severe receptive and expressive language delay and the rest of them. As a family, we continue to move.

SHALOM!!!

It has been way too long

Life has been moving at such a fast pace and my plan to provide updates has been fruitless. Samuel has been doing great. The biggest change I have seen is his awareness, It seems like turing 14 caused some change within him.

He still move around alot and has managed to break all my dinning chair BUT I remain thankful for the “small” stuffs. One day couple of weeks ago, he walked into my room and said “Good Morning” without any prompt….thankful, Everyday as he walks out of the house, when we tell him to have a good, he tells us to do same…thankful, He has managed to pass all his 4 courses so far….thankful.

My blessing when it comes to Sam is unending, its un quantifiable, do we have challenges? With school, with support staffs, at home but I have come to realize that for me…for us…..I must be wise with picking the battle I fight, battle I warn and leave and battle I just leave by the road side …this has worked for me….for us.

I am sending love to all parent, this season is not easy. Its a season that will test us all in different ways….test our finances, mental health, relationships and much more…..our children are also going through a very tough season….I wish you all peace and love.

As we are about to celebrate  Christmas,  I have been thinking of the things I am mostly grateful for.  Beside the usual protection over covid outbreak, I am super grateful because this time last year, I was in total internal breakdown.  I had so much struggle concerning  how to manage Samuel needs, I had personal struggles  about my failure concern him…..am I really doing enough?.  I had struggles  about his siblings and wonder if I am doing enough with them.

Sometimes the voices in my head can be louder than the battle in front of me.  I internalize everything so much and so deep that it makes it super difficult  to have a second of clarity.  I am a chronic analyzer….I over analyze just about everything.

Writing has always been my outlet because as a young child, I had limited voice.  I am also great at having a strong facade so opening up to people is very difficult for me but when I write, it’s almost like a renew of my body and soul.  I am super grateful for this platform; it provided me what I needed for 2020……its like God knew that 2020 was going to be THE year….

The year when not only Covid came, Tope was practically  locked away from us for almost all year, a year when I will have no break, a year when Samuel would receive many diagnosis, a year when Samuel will need help to manage his energy, a year of many holes on my wall, a year  of many fight and fall, a year of success ….Samuel has had an amazing year.

The biggest success is in how Samuel has matured.  On a physical level, he has gone from about 5″11 to about 6″4/6″5 but that is not as significant as his emotional maturity.  The morning after his birthday, he knocked on my door and thanked me for a great birthday the day before….this has NEVER happened before.  He was not only able to go to a new school but has done amazingly well this school year…I got a call from his math teacher on Wednesday and she told me about how amazing he is and how is is such a great kid, but also mentioned that he has been able to work well on his school work and will be getting 92% for this half of the course. This year has been amazing

As we start the last leg of 2020, my hope is that we all dig deep and find things that we can be grateful about. 2020 has taken too much from us…to some its a life, some relationships, some work, some social interaction and I sympathize with everyone and pray for a brighter time ahead, I still do hope that at the very least, we celebrate and be thankful for LIFE

I am thankful for you all….Special shout out to my Tope, my big sis Yetty and a co worker turned friend…Sophia…..you have all been my go to people when the sky get a little cloudy❤

Have a super Christmas all. 💖

Samuel turned 14 a week ago. 14!! I can’t believe that my Sammy is just 4 years from what THEY considered adulthiod:). It has really been a journey. A journey that has taught me so much; I have gained much more from Samuel than I can ever give to him. He has made me who I am today….eternally grateful.

Samuel’s birthday was simple…a simple pizza, drinks, snacks and cake. We ordered vanilla cake but they mistaken made chocolate. As soon as I saw it, I knew a meltdown was underwat but yet NOTHING…Samuel asked if I could return it and I simply said I was tired and can do it Saturday morning….and he said “Okay”. Okay was the last word or reaction from my mind. The old Samuel would have broken down into a total meltdown with eyes and nose running. You would have thought he had received the worst news in the world.

The next morning, I heard his footsteps and did my usual “Samuel, you have to brush your teeth” anticipating the usual argument around why brushing on weekend is required but I got NOTHING. He just opened my door and said “Thank you for yesterday, I had fun”…I was shocked and taken aback by his reaction.

If this is what 14 has to offer me, I am ready and excited for what the year has in store for Samuel. I am always proud and excited for this boy. His pure heartedness is what I aspire to have.

Thank you to everyone that has been supporting and praying with us. We are greatful❤

Happy birthday once again Sam. 14 is looking amazingly well with you.

Over the years, I have been asked about medicating Samuel and i have thought about what medicating him early could have done for me…both positively and negatively…i guess, i will never know. 

I am not against or for medication, I’ve always been an advocate for whatever is best or whatever I think is best for Samuel.  I personally don’t take alot of medication, not because of believe but mostly because I cannot be so dedicated to take a pill everyday because of my selective memory🤣  I also grew up on needle and prefer needle over pills any day.  But, I digress…..

When  he was 3, he was prescribed medication to help with his hyperactivity but I felt like he was too young and i felt like I could manage his behaviour.  Looking back, maybe that was a great decision but one mistake I made was not even exploring melatonin  for his sometimes 72 hours of sleeplessness; my personal fear of any medication and lack of knowledge got the best of me.  We learn and grow on a daily.

We had another encounter at about 8 because his focus became an issue that was seriously affecting him academically. I tried for a month and stopped.  I stopped because of many reasons, One, because I didnt feel like the pediatrician  had his best interest at heart. Two, I got introduced to new diet options that worked for some.

The diet worked for many years….we did it for a little over 2 years with no cheating.  Then Samuel started sneaking food and expressed interest in exploring other meals so we stopped.  My goal is to ensure that he never feels like he is being singled out  and I want him to always have a voice when it comes to his life.  Samuel is extremely  smart and vocal….I wanted to keep that Samuel spirit alive.

When Samuels started last year of elementary, I decided to explore other means of helping him with his focus and hyperactivity. I knew highschool was going to be a different element for him and among many things, he will have to learn time management with his work as well as being focused enough to absorb what he is being taught. In the midst of figuring thing out more diagnosis came and then came Covid 19

The presence of Covid has impacted Samuel negatively.  The first 6 or so months we went through different types and stages of emotion.  His ability to focus for an extended period of time diminished, his steming tripped, he was unable to stand or sit still.  He stared making hole in the wall, either by bumping into the wall with objects or with his strong body.  It became a challenge to keep hin calm and steated for even 5 minutes.  This is when it became super obvious to me that I needed to explore other options.

Samuel started seeing a new pediatrician that specializes in ADHD. At our initial meeting, he suggested other Avenue to help keep him calm and manage his energy. We used the summer time to explore alot of energy draining or reduction exercise with the hope that it’ll help calm his nerve.

As of the first week of Septemebr, we introduced Samuel to medication and so far so good. The medication works for about 4 hours and the goal is to help him calm down enough to listen in school and be able to absorb what he is being taught.

School has been going great. Samuel has been doing amazingly well. His grades are way up…mostly A🙌🏾 Medication management has been great. Stemming continue to increase but trying our best to manage and exploring other options again

We continue to move ❤❤