Samuel and I: Our Autism Journey

I know it has been a long while. Taking time out to fulfil a long time goal of mine was great but it took so much time away from some of my commitments.

Now…Sensory. Being either Hyper or Hypo sensitive to noise, cold, heat, fabric…the list goes on .. is not foreign to autism. I remember for many years when Samuel would only wear a certain type of fabric or rip his clothes because of senaory issues.

One of our recent callenges is his hypo sensitivity to cold. Samuel has always been able to endure very cold temperature however it has gotten worst since the lovkdown. Samuel sleeps in very cold room…as a matter of fact, you will need a jacket to go in his room….he calls it The Artic.

The side effect of this is that even thou he probably doesn’t feel the cold like we do, his body does feel it internally. This has translated to continuous running nose….cold etc. Why do i let him sleep in the cold? Because i am not Jesus :)…i cannot watch him through the night:) I use to go to his room and turn it off and if you give it 2 minutes, you will hear movement in his room.

As we take time today, April 2nd, to discuss autism, i want you to be aware of the person that covers their ears to block out noise, the person that flaps their hands, that person that continously run their hands under water or play with sand…i want you to accept the uniqueness in all of us. When interracting with a person on the spectrum or their parent, i encorge you to show compassion in place of judgement, I encourage you to be quiet even when you are eager to speak, i encourage you to manage your expression and i hope that you will ask “Do you need help”.

I don’t see the negativity in Autism, what i see more is intollerance in some people. I hope we all educate ourself and children about autism as we move through the month of April.

It has been too long and for those that know me well, you know why. This has taken me away from here and sharing on where we are and how things are going.

Samuel has been Samuel. He is doing amazingly well at school. I got an end of term note from one of his educators on Monday and it was full of praise. Samuel has used this term to set a new standard for himself. He continues to amaze all of us.

He does his laundry with little support, he now wraps towel around himself after shower (this has been many years in the making) and most importantly, I don’t have to wipe water drips from the washroom to his bedroom anymore because he now makes effort to wipe himself down.

As we prep for the new semester, i am excited and scared. Its will be a senester full of many courses that may highlight his language challenges . But Samuel is someone that always find ways to amaze me so im excited to see what he can do.

Raising a glass to Samuel for exceeding all of our expectations and to an upcoming great year. 🎊🎊🎊🍾🥂

🎶I SEE THE EVIDENCE OF YOUR GOODNESS, ALL OVER MY LIFE🎶💃🏾💃🏾💃🏾

It has really been a very long time.  I have been so preoccupied with fulfilling some of my personal goals and finally spending time with self.   But Sammy boi can only turn 15 one day in a year.   On his birthdays, i am always reminded of this beautiful journey he took me on 15 years ago….i am always grateful that he chose me…small me.  He has been an amazing blessing to myself and everyone he meets.

Ayomide (My joy has come), your name has never failed; you are the epitome of joy, laughter, your energy brings peace to everywhere you go.  I am proud of you, of your being, of your success, of that spinkle of birth marks on your back, of your smile, of your big ole feet🤣🤣…..you make me the proudest mum to ever live.   You are the human that i want to be like.  Thank you for making the journey super easy, thank youfor loving me with no reservation, thank you for that special hug a decade ago when i was in my lowest…when i was contemplating, thank yoi for being my lifeline, my beautiful anchor❤❤❤

Happy 15th birthday my baby boi, biggest papa, laughterologist.   You continue to make us super proud of who and how you are. May you ecperience unprecedented favour, growth and success this year.

So let me share one of our accomplishments this year with you. Last school year, Samuel was taking grade 9 locally developed class. Based on IEP, he was taking about grade 5 math. Samuel got like 90 something without studying or even having assignmnets. I decided to request for a move to a grade 10, no accommodation excluding EA and out of locally developed. I was scared doing this, my objective is not to stress Samuel but i’ve always known that Samuel is a math genious that is et to be discovered. Language is our mortal enemy🤣🤣🤣

Samuel is now taking his grade level math and has had the audacity to look at me sideways when i wasn’t able to help him with his homework.🤣🤣🤣 Samuel is doing well, his mid term report card came yesterday and he got 70% with the class average at 60. This is the tastemant to the person that Samuel is. You give him a challenge, and he walks through it like a pro. This is a boy that went from grade 5 math to 10, skipping 5 years of math and still manage to get 70. We are excited for this new year for you Samuel

My only begging for you this year is to stop growing in height and shoe size, my pocket cant take it anymore🤣🤣🤣

Happy birthday my first love❤❤❤

🎶I AM REMINDED OF HOW YOU NEVER LET ME DOWN🎶

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.