Samuel and I: Our Autism Journey

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

Many of you may have heard about the 14 years d boy that was kidnapped (now found) in Toronto. I took time to have a convo with the boys to ensure that they don’t go with anyone or try to move close to anyone’s car. My focus was mainly on Aaron as I wasn’t sure how Samuel would retain the information.

Fast forward to today, the grandma at home called to let me know that Samuel left his school bag at home. I called his cell and his brother’s cell with no success. As I was in the process of trying to figure out my options I.e call uber delivery or something, the grandma called and told me that Samuel came back and he just walked out with the bag. I told the grandma to call him back but Samuel’s 1 step is like 10 steps for the rest of us….Samuel had dissapeared.

The boy’s school is about 10 minutes walk from the house with 3 side road crossing point (with no light) and couple of turns. I was so afraid of how he was going to make it back to school and all the what ifs. I immediately emailed his teacher to let me know if/when he arrives and I planned to call the school after bell rings to confirm his arrival. The time of waiting and hoping that the result is a positive one drove me insane.

Sure enough,his teacher emailed to let me know that he arrived back in school safely. For sure Samuel did not let Aaron know that he was leaving the school. I assume he realized his bag was missing and just made a decision to go back to get it

Samuel has never walked to and from school solo before. As much as I am eager to get home to have a discussion with him and his brother, i am amazed at how grown this little boy of mine has become. Am i ready to leave him to walk back and forth by himself daily? NOT YET, However, i can now have his brother fall back a little and allow Samuel to lead the way back

We are not where we want to me but today, Samuel unconsciously showcase one of our “small” victories even thou I almost lost my mind😂🤣

I thought hard about writing this and weigh it for about a week but as I sit on this train thinking about my colleagues having fun times together while I rush to take Samuel to his session, I have to admit to myself that I do miss what it could have been.

When I had Samuel my 2 in-laws and 3 friends were pregnant at the same time. We all had the kids close to each other (Between end of August and Decemebr); 1 girl (Esosa) and 5 boys. Out of all the kids, Samuel was/is the only one with unique needs.

There are times when my thought drifts to the kids, I think about how they can now go to school on their own, go to the mall with friends,go to the movies, have a crush, some are likely looking for summer jobs now since they can do some work at 14. I think about school…i think so much about what Samuel could have been without Autism…. I think about him having a life partner…i think about how he will be able to keep his job..It hurts when i see how Autism has changed our lifes

In thesame token, when I think about Samuel, I think about how he does not miss not having friends, I think about how he has been walking to school with his brother since September without any issue.  I think about how I can leave him with his brother for an hour without issue, I think about how he was able to transition from 7 years of Autism classroom to mainstream  classroom, I think about all he has accomplish, I think about how he will do anything for me if I show any sign of sadness,I think about how he is so intune with my emotions even when I put on a brave face,

I think alot about what we have accomplished but I have to be truthful to myself, seeing his age mates do age appropriate  things that he can’t do, hurts my soul.  Don’t get me wrong,I am blessed to be his mama and blessed for all he is but I still hurt

As a mum to Sam, I have learnt over the last 13 years to celebrate the “smallest” victories. We have been working hard on our speech since Samuel was 18 months old, we started with saying “pop” to describe bubbles. It has indeed been a long Journey that took us over 7 years to be able to join 2 words together to make our mini sentence.

Regardless of speech related obstacle placed ahead of us,we work hard and selflessly to overcome them all. Samuel is a very unique child that I hope everyone will have the privilege to meet and interract with one day. As much as I drag him to one speech session, ABA and the others since 18 months, he does not complain…he has learnt to tolerate my antics and random sessions.

My passion for his success is rooted in the fact that he can do all things. ..That he is unstoppable…..That his mind is sound….that he will Indeed be great in this life……I call him my retirement plan 🤣

The objective of this post is to announce that we can now properly pronounce “TH” in words. The therapist officially discharge us and in addition gave us 2 months off. Some may say “what’s the big deal, he still has speech delay”but unless you know our journey, you may never be able to appreciate our current state.

Maybe I will share on a session we are currently taking which focus on sex and teens on spectrum…pray for me people🤣

So I was late to get home yesterday and I got a call, as I looked at my phone,I saw Samuel’s name. I picked and the following was our convo..

Me: Hello

Samuel: Where are you

Me: I am on the train, I am running a lite late

Samuel: Are you okay? Are you attacked?

Me: No,I’m sorry. I just left work late

Samuel: When will you be home

Me: In half hour

Samuel:Okay,bye

Samuel is one of the nicest person I know. He cares deep and love even deeper. As today is my birthday, he said to me before leaving the car..

“Today is your birthday so you’re suppose to have a good day, bye” 🤣🤣🤣

So I am here with my legs crossed and having a good day as directed by master Samuel

As I sit on this train this morning,it finally hit me like a heavy emotional brick.. Samuel aka Big Papa aka gentle giant ….my little 7 pounds baby on a cold Monday in Novemeber is going to high school. The boy that didnt say mama when all the other kids born around thesame time were already having a full conversation. My beautiful baby that wasn’t going to likely be independent is now a very wonderful young man that is high school bound. I am in awe at how far God has brought us…at how far we have come….at how far I have been able to bring him…at how much my sacrifices…Aaron sacrifices…Tope’s sacrifices has brought us.

I didn’t have alot of support during this journey and I now understand the purpose of this…..it’s so I dont share the glory of this moment with nobody. Abby, you have done very well

Samuel You have done super dupper

Aaron,more than anyone, you have been the truest and most loyal MVP

I CANNOT BELIEVE IT….WE ARE HIGHSCHOOL BOUND💃🏾💃🏾💃🏾❤

Samuel always find ways to assure me that all will be well. His sense of humor,his laughter, his ability to tolerate my many many new ideas. He truly gives me more than I can ever give him. He makes me look at life differently,he makes me laugh (he is a comedian 😂), he brings light to my darkest time and finds ways to encourage me to look at life differently.

He does all this without even trying…..he does it with little effort. I believe God spent more time when making that boy.

I cried tonight
Oh! I subbed like I have never done before.
The realization hit me like a brick…that realization that we cant….that I may have failed.
The realization that the sacrifices produce no result
December…while everyone was rejoicing…while everyone was in a cheerful mood…while everyone was full of energy, I received a news that I wasn’t prepared for and it hit me today……. I received collection of news that almost made me take time off work to avoid a breakdown.  The road block that I thought we had overcome showed up with even more blocks
I sit in this car ..looking at my door but cant go in

I just gather myself
I must wipe my tears
I must put on my mama face
I must push emotional s back
I must go in as a happy mum not the shattered person I am now

Its devastating to know that the news in KG2 remains same today.

It’s hard for me as a mother to hear that STILL your child is SEVERLY delayed in both verbal and receptive  language.
It’s difficult to know that his future is cloudy for me

As other parent walk excitedly today exploring classes and with such bright future, I breakdown knowing that the future is cloudy for us.

I cried today … I am still crying today