Samuel and I: Our Autism Journey

Since the lockdown, Samuel has been stemming significantly more. The stress over the what he presume to be a negative impact from the US election combined with COVID 19 is not helping either. Over the last 10 months or so, our home has felt the aftermath of all this stress on Samuel

We now have 2 dinnig chairs because he has managed to break the rest, in the basement, we had 4 holes on the wall from him bumping his chair against the wall as he is not able to sit still for an extended period. I’ve since gotten him gaming chair and fixed the holes.

The huge hole on downstairs staircase is from him stumbling into the wall, hole in the living room is from him falling down to sit and continuously bumping into the same spot. This holes I haven’t had the time to fix but it’s on my ‘To do’ list this coming week as I will be on Vacation.

Now to today, as I was about to take his picture sitting down, I looked and there was a huge dent on my dinning wall. I was shocked, I got angry, I raised my voice, I queried him….I am tired of the dents and hole….I am tired of him stemming….I am tired of my beautiful home getting damaged…..my head started pounding…..I became super angry…. I became tired

I asked him why he didnt tell me, he said “Because of this” pointing directly at me. “I know you will be like this, upset”. It’s difficult not to be upset but I need to evaluate myself and figure out a better way to express my frustration. Seeing the new dent just got me so tired. It’s like all the effort is not producing alot of result. I feel like I dont know how much more I can do to manage this

On a positive note, I now know how to fix holes on the wall. I just need to know learn how to cut and replace drywall.

My morning walk today was a time of reflection.  I find that the 30 minutes or so of walking and breathing in the fresh air has given me that GO Train alone time.  It’s a time I use to pump myself up for the day  reflect on yesterday and plan the new day.  Today was no different however, It was Samuel that came to mind.  Tomorrow, is the very last day of school however French seems to be the only course left which means today is the last day of elementary  course (no French on Fridays).  Today’s reflection took me way back to my childhood and back to my children……children in general.  It took me back to my personal struggles and triumphs. ..it took me slightly through some pain, aches and gave me that opportunity  to give myself a 👋.

I have journed with Samuel (and his brother) through abusive home,  shelter, many moves, no electricity, no heat, the low and the up.  I have fought school system for Samuel’s  right, I have met horrible teachers and the most amazing educators.  Samuel (and his brother – I should write about Samuel’s brothet one of this days….one of the most wonderful human to ever cross my path) has really gone through all this….I have taken Samuel through all this journey and we still came out on top.  I never give myself enough accolades but I am doing it today.

See I was the child that was overlooked, that was treated less than, that was disregarded, that was called dump, stupid, the child that was told that they will wipe the butt of their mates, I was a 10th class citizen even in my home…..I was that child.  I know the feeling of being treated “less than”, i know what it feels like to feel less than, i know what it feels like to be at the bottom of the tooting pool, i know what it feels like to not be celebrated…..I said all that to say that I made a promise to myself to be very intentional with boosting my children’s self worth and even any child that I meet.  I knew what I never wanted my children or any child to feel….then autism came.

Autism meant that regardless of my effort, people will see Samuel as less than, as a second class citizen, that they will see Autism before they see anything else.  So I knew I would have to work harder for his self worth and I will have to work harder on folks around him.  I knew I will have to ensure that above it all, they see that Samuel is super intelligent, handsome, funny…did I say FUNNY, has the most beautiful nose, ears, eyes, lashes, lips…..even the spots on his back are beautiful……that I will need to force folks to see Samuel before anything else.

So this morning, when that song came up, the emotions flood because I know that I have done super well.  I have solely build a strong foundation in my kids. That battered child, emotionally bruised little girl, that girl that will not amount to anything has managed to build a great 13 years old young man.  I have managed to improve the next generation….. Most importantly I have done this mostly all by myself….my husband has been super supportive however he came later in the game…the foundation is all me….I sometimes feel awkward giving myself praise but today, I’m doing it. I..Abby..I DID IT. When I look back now, I almost understand why I had to do it by myself….God needed to show me that I am capable, that I am important, that I am valuable, that I am strong, that I am wonderful ….that despite what I was called, what I was made to feel….that a beautiful flower can come through me.

I have managed to raise a young man that at his age….regardless of autism understands consent (age appropriate level understanding), understands that we have to be kind, that is well aware that regardless of academic grade, he is still the most intelligent boy alive😁, that can have an open discussion about his feelings without fear of judgement,  a young man that I can ask to make pasta, noodles, bake chicken or anything with instruction for himself and his siblings (Samuel is the second cook in our house).  I can’t remember a week when I had to cook for Samuel more than twice in a week.  I have done an amazing job and I give myself accolade

I still struggles because the voices of childhood can be very loud at times but so far, this is not a battle Samuel will have to deal with. I pray that as we journey to high school, we maintain the same spirit and meet individuals that will see Samuel way before they see the autism.

If I can leave here with one of my believe…Words are like tattoos, they are super difficult to remove, therefore be wise about what you say especially about your kids or kids under your care….it can shape their whole existence.

“..And when I formed you, I made no mistakes, I’ve always adored you and nothing has changed. God help me believe, believe what you say”.🙏

Who would have thought that a damage tree can bring out such a beautiful flower?💃🏾💃🏾

We want to take this time to really thank everyone.  The journey to get here has been made easier by everyone that has joined us at different stages of this journey.   I have been meaning to post this but I have been short of the right word to express my inner thoughts or to express the joy I see floating through Samuel.  

Everytime I think about his graduation, tears flows through me…not of sadness, not of fear of what is to come but just tears of release..it’s satisfaction like “baby girl, you did that”🤣🤣.  Similar to when you hold your breath when trying to complete a task and once completed, you just breath…deep breath….that is the type of release I feel. 

Thank you all and may you always be elevated and celebrated.  

TGIF

• 

I remember coming here broken about what the future holds as far as high school is concerned.  Even through the lock down, we have been working through what that looks like for Samuel….the courses, how he will manage in the biggest school he has ever been to, expectation on managing his courses and what the 4 or 6 years may look like for him.

I met with the Vice Principal, the SERT, guidance counselor as well as the psychologist that diagnosed Samuel plus his current SERT and teacher. The new school is super prepared for Samuel’s arrival…the SERT even mentioned maybe having Samuel join football team because of his built (currently slight over 6″4 and around 175 pounds) (Not gonna happen thou….I was in labour for too many hours to just throw this boy into football….my bravery has not reached that level🤣🤣🤣)

I am so at peace. I am well aware that Samuel and I will face many challenges. I am well aware that their will be time when I may bump head with his educator. I am well aware that Samuel teenageness 🤣 may peep his head out of the cloud at anytime. I am also aware that Samuel has folks even outside of myself and his Step Dad that will fight for his right to get him thesame opportunity as everyone else.

I feel good today…I have peace when it comes to Samuel. In the next couple of weeks, I have appointments with specialists to explore options for Samuel when it comes to focus…..maybe breathing exercise….maybe naturopathic medicine….maybe ….whatever the “maybe” could be, my mind is more open today than yesterday and WE are ready to explore anything that my aide in maintaining who Samuel is while helping his mind to focus

We can see the sun shining brighter and brighter today. 🙄❤🤸🏾‍♀️💃🏾🤸🏾‍♂️

It took me a while to write this and in all honesty, it’s not that I’m totally okay but it’s that I’m now shifting from my Mourning stage to acceptance….although,I haven’t totally crossed over yet.

I knew Samuel had Autism when he was 18 months old…I didn’t know what autism was prior to that but my older sister was the first to make the observation and provided with a little bit of insight she knew about Autism. By the time Samuel officially got diagnosed, I had already subconsciously gone through my mourning stage so the feeling I felt this last week was far from what I felt almost a decade ago. A decade ago,I was deep into the acceptance stage when the news of autism came…..this time around, I was well grounded in the denial stage so the news hit me more than I could even explain.

I went into depression,cried almost all the time and disconnected from people. It was tough but folks that knew me reached out and tried their best to redirect attention to how far we have come. Folks like BF reminded me of the many impossibilities that we overcame…reminded me of when Samuel was without any verbal communication…..she took me back (with her little words) down the memory lane. Folks like JB, LG, P, ST and MN gave me Avenue to pour my grieve and thought without judgement….when the storm was high, God raised folks to calm it for me.

Now that I have processed it, I look at this new diagnosis as clarity….clarity because we can now understand why Samuel does what he does and how best to help him to achieve HIS greatness. Even thou it’s not the best news, it’s still Samuel news and like we have done in the past….we will face it heads on.

Samuel’s diagnosis is now as follows: Severe language based learning disability, ADHD, Learning Impairment and Autism. With verbal communication (which affects just about all school subject), Samuel is at either 1 percentile or less however, with Non Verbal, Samuel is at either average or high Average …between 30 and 77 percentile. I’ll also gloat and say that in spelling, Samuel was evaluated as above average. Samuel has always been super smart,and, respectful,funny and super compassionate….he is one of the best human I know. I am yet to meet anyone that has had the chance to meet Samuel speak negatively about him. All the teachers, daycare providers and speciality always emphasize how pleasantly surprised they are at his demeanor. He is just an awesome person and I feel super privileged to guide him as he journey through life.

The journey ahead for us is super blurry however, I am ready, Samuel is ready, my husband is ready….the whole family is ready. We have a very small circle….very very small but it’s a powerful circle. Each person (young or old) in that circle is an advocare of Samuel.

Key point: the percentile (the breakdown was long) broke me more than the diagnosis itself.

On a lighter note, I think Samuel is now about 6″4 and he keeps patting me on the head….the boy is disrespectful 🤣🤣🤣🤣

Sending this to the universe so that I can focus on my next meeting.

Our autism journey has been super adventurous,complex,simple,lonely, crowded….it has been a mixture of positive and negative emotions.  However, I was always at peace because I know that I do have PhD in Samuel’s  autism (if that makes sense).  I know how to work with Samuel.  I know how to get his best out of him.  I know how to fight for Samuel.  I know Samuel more than I know myself.

Today, we got two new diagnosis…..one was a surprise while the other was really known to me. 

I just need to drop this here with the associated emotions so that I can focus on my work meeting.  I can’t wait for the time to cry (this is required for my mental health…I cry it out to release the stress which will enable me to come up with plans for him) not for now, I must pretend like I am active and listening as people chat on this call.

Detail about the diagnosis to come.  The diagnosis comes with alot of positivity in the midst of what seems like a sad news.

I had very low expectations when the thought of homeschool hit. It has been one of the most challenging task I ever took on. I am now clear on why I CANNOT be a teacher regardless of how much I ache for the summer off that comes with the package. Teaching Samuel’s brother has been piece of cake but with Samuel….let’s just say it has been a journey .

I had high anxiety and difficulty with processing how the lockdown was going to work for us especially when it comes to teaching Samuel. It has been a lot of adjustment, alot of explaining, alot of constant steeming, alot of running, talking to self and pacing.

In all this, I saw something peek it head through, alot of determination. Let me be Frank and say getting Samuel to do school work is challenging. Not in the type of challenge that some parent of neurotypical kids feel, this is autism specific. Samuel is determined to follow school schedule so I work with that schedule has well. His breaks align with when he takes them in school. When work starts,he comes prepared like a soldier going to war….and focused. The challenge thou is also focus

I have to redirect him often because the voice in his head is far greater than what my vocal cords can compete with. I am now learning to calmly redirect him and because I’m calmer, I’m learning how super smart this boy is (I knew before but still)

Samuel was able to read his stories and answer the multiple and small sentence questions without help from me. I wanted him to answer his questions withou me having an opinion on it. Samuel is considered “Severly delayed in expressive and receptive language ” but someone , he managed to do his test solo and get 57, 60 and yesterday 87 percent on his own (to some, its low mark but the 57% is 100% in my sight because we have come far). I am finding that he does get super distracted however he can do this things…..all he needs his constant reminder/redirection. I realized that long sentences are much more harder for him but we shall work on it little by little.

I am in awe of how this boy keep teaching me about myself and himself. The more I think I know, the more he challenges me. BTW, he is now almost as tall as my door way…..I’m gonna need everyone to pray for my bank account🤣🤣🤣

Stay home, Stay safe and for those in the service or medical industries….all the essential works, Thank you.

As we all deal with the current world challenge,I hope we are taking time to stay safe, maintain safe distance and stay indoor as much as we can.  We will indeed get through this.

April 2nd is Autism Awareness day and my hope is that for this particular one,we take out time to check on each other and especially,check on parents with kids who have unique needs.

I have been thinking about how most parent of children and adults on the spectrum are feeling.  It must not be easy for them to explain to their none verbal kids about the situation  we are in and why they are unable to go to their regular activities (most kids on the spectrum  love and need to stay on routine).  I went for a walk the other day with Samuel and when he saw my neighbor,he attempted to run over to them…..and Samuel is aware of Corona virus (too aware even) so how much more children who cant really grasp the situation and understand social distancing.

I sympathize with single parents who still have to go shopping with their kid(s) on the spectrum. Going grocery with Samuel would have been hell because I can guarantee that folks wouldn’t have snapped at us because Samuel doesnt really understand that their is something called personal space.

As we pray, meditate (or whatever we all do to keep same during this period), please include these parents in your thought.

Let’s us also educate our kids about the uniqueness that is in all of us. This too shall pass

SHALOM #AutismAwarenessDay