Samuel and I: Our Autism Journey

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

I am super sentsitive about Samuel and how or who can discipline him.  When people don’t know your journey,  they can never appreciate your current state.  Most people including my family (husband  included) do not understand how we got to where we are and why i do let some things slide with Samuel.

For years, i tried to get Samue to use public washroom or any washroom outside of our powder room washroom and it was a battle. A battle that caused alot of embarrasssement and side eye from  many people.  At some point, we never left the house without 3 change of clothes because Samuel will rather pee on himself than to use any other washroom.  Now that Samuel is 13th, we still have this same issue but on a lighter scale.  Samuel still showers in my washroom and uses our powder room for  #2.  Samuel does not use washroom at the school and this is a bigger issue that may lead to health problem but we are slowly but surely working towards it.

I once asked Samuel why he uses my washroom instead of his and his response was that “It smells”. Not that it smells because it’s dirty but i later realized that the smell of the paint (which never stood out to me until he called it out) was either too strong for him or he just doesn’t like it.  Samuel has had issues from smell of washroom to the color of the washroom.  Over the years, we have learnt to work together to make things work.

Our past struggle is why i get super irritated and sensitive about Samuel’s washroom routine.  Samuel does NOT stand to pee and for some reason, this is an issue that requires some level of time out to some people.  This to me is a NONE ISSUE – He is accomplishing the objective which is to pee  in the toilet.  When people don’t know your struggle or don’t want to understand where is coming from, they start unsolictated advice  or feedback.  I am super okay with Samuel sitting to pee…it is a NONE ISSUE.  Do not try to purnish or talk negatively about my son and his pee abite.  We are currently in a hotel and Samuel is using the washroom at the hotel —-  NoW THIS IS WHAT I CALL A SUCCESS STORY.

I can’t wait for Samuel to be able to tell me why he prefers sitting than standing up to pee.  For now all i get is “I don’t know” but i am sure in few years, he will be able to give me a better explanation but till then, Stay off my son’s tail as this is a  NONE issue

As a parent of a child on the spectrum, i often find myself alone on an highland. I find that people either do not take time to understand our journey or they try to find a neurotypical solution to an issue with limited consideration to the uniqueness that autism brings or they just burden me with their own issue and have no regards for how much i may have on my plate. I find myself alone on this journey and i’ve thought about how to purge myself in order to ensure that i’m mentally available to my family as well myself.

Over the last 13 years, i’ve dealt with many feelings about autism. I’ve mourn, i’ve cursed, i’ve cried, i’ve laughed, i’ve accepted, i’ve educate, i’ve been educated, i’ve experimented , i’ve prayed, i’ve sowed seeds and the list goes on. I keep repeating this stages depending on the situation at hand however, i’m more at the “Whatever is best for Samuel” stage at this time. I am only angry when he is facing a challenge or when people take his need for granted.

One of the most challenging struggles we are facing is about navigating a new school board and ensuring that he has all he needs now and in September when high school starts. I assume that most of my writting will likely be around this topic.

I’m super excited about blogging and i hope that it helps me to distress which will enable me to direct my energy to other important things. I also hope that you all get an insight into our life and maybe…..just maybe you too will join me in celebrating the “small” victories as you have more appreciation for where we are coming from

Thanks all as you JOURNEY with us and happy reading.