I remember taking Preston to the pediatrician and voicing concerns about Preston also showing signs of Autism. Maybe I had a heightened sense of awareness, maybe I was looking for it since I felt I had failed my first child when I didn’t know something was wrong.
At the appointment, the doctor walked in and said “Hello, I hear we have concerns that Preston has delays as well. I have NEVER heard of any family having more than one autistic child in their family, but let’s see what we’ve got here”
8 months later we had a second diagnosis.
I would also like to share that about a year later that same pediatrician said to me “It’s not surprising at all, I read about many families with multiple children on the spectrum” This is when I knew, I was paving the way in more ways than one.
The beautiful and terrible thing about Autism is that each person is different. What works for one, might not for another. Where one struggles, the next may excel. I know many parents hate when there are “Rain Man” references, but that is what was said a LOT to describe his personality. Especially in my eyes, he was BRILLIANT – compared to everything I had experienced with my daughter.
But with the good came the bad. My son wasn’t happy. At least with Trinity, there was laughter and smiles within “Trinity World”. She had joy. Preston seemed uncomfortable within his own skin. He had a constant state of anxiety or rage bubbling. He was quick to anger – not just to others, but to himself.
He also was frickin’ Houdini! He would run faster than Speedy Gonzales. After my first marriage ended, I was living in an apartment. I had a deadbolt lock, chain lock, AND a keyed lock from the inside (I wore the key around my neck). I remember one winter day I had just brought stuff home from the store and had to use the bathroom right away. I locked the deadbolt and chain, but couldn’t wait to do the key. I ran to the bathroom and less than a minute later I hear the door slam. I RAN! That little stinker pulled a dining room chair to the door, unlocked the locks, and ran away in less than 60 seconds – HE WAS 4 years old!! And he was gone! In a diaper, in the winter cold. I looked for 3 minutes and called the police right away! He was found 15 minutes after the police came and that was the scariest thing I’ve ever been through in my life.
I have a lot to share about my experiences with Preston, but I think it’s best to spread them out. Behavioral health is tricky and resources were nonexistent. He has had a hard journey and it wasn’t because he was bad. It was just how he was made. **Spoiler ** He turns out just fine. I just like to focus on the positives. We all have our ish right?!
These two were my only priority. I lived and breathed FOR them. If not me, then who?
#ThursdayAutismAwareness I will be sharing Autism testimony every Thursday. I have 21 years of experience.
When Trin was young, she said “Mum Mum”, “baa baa” and “Up”. Around 15 months of age, she stopped. No more words. She didn’t speak again until she was 4 & a half. We started using sign language. Simple things like “more” “all done” “yes” and “no”.
One of the therapies she took was Oral Motor. Definition: Oral-motor exercises are specialized exercises that aim to improve the strength, control, and coordination of the oral muscles (tongue, lips, vocal folds, and the jaw). She would chew & bite on devices and there were sensory things like tiny sponges on a stick that we would dip in juice and rub on the side of her mouth. Honestly, the staff was amazing and the lady developing this 20 years ago was groundbreaking and determined to help.
During these therapies, we realized that Trin was unable to “blow”. She wasn’t able to control the breath escaping her mouth which was probably why she wasn’t talking. (Or we prayed it was that “easy”)
She must have been able to before if she spoke before, right? So much is unknown as to WHY this skill was lost.
We did 20-minute sessions twice a day. Our house was filled with bubbles, horns, and party blowers. We had milk with straws at every meal and would encourage her to try blowing bubbles in her milk. We would play “Happy UnBirthday” weekly to see if she would blow out the candles. This went on for almost 2 years.
Then one day I was in the living room and I hear a squeaking noise. I get up and start looking around the house and I remember stopping in the hallway and thinking “Oh My Goodness… Could it be?!!?” Sure enough, Trinity was sitting in her closet blowing a toy horn!!!
A week later, she called me “Mum Mum”. I never knew if I’d ever hear those words again. 💙💛💚
#ThursdayAutismAwareness I will be sharing Autism testimony every Thursday. I have 21 years of experience.
This past weekend, my middle little turned 19 years old. Preston is my most polite child. All of my children have good manners but he is EXTREMELY polite. Every Single Time we are in a social setting since he was 5 years old, I have been told how polite he is.
Preston is also my child who struggled the most to be inside his own body. He has had a very difficult journey and has come so far! He is witty and creative and so so kind. He puts everyone else’s needs before his own. He has a gift for music. He has been asked to sing the National Anthem multiple times since he was 10 years old. Sporting Events, School Events, City Events ~ He is in demand. He is also my piano player and often gifts me music on my birthday and Christmas that he performs.
Preston was a twin and I lost his sibling early in the pregnancy. I remember praying for him to hold on, and stay strong. After he was born, I always had a lingering feeling that Preston’s twin was still meant to be. Maybe in my future. After he too was diagnosed as Autistic, I still held onto that feeling. My family thought I was nuts! “Tiffany! You have 2 Autistic kids, you do NOT need more on your plate!”
Growing up I always wanted 10 kids. I gave up that dream after Trinity was Diagnosed, but I was already pregnant again with Preston. I just knew with my entire being that there was one more. I was a foster parent for a few years and made a difference, but that wasn’t where I was supposed to be.
10 years later I was married to someone new & that’s when the baby came. The baby I KNEW I was supposed to have. Now I was done.
I share this story because I want you to know – Preston is BEST FRIENDS with this delayed sibling. You wouldn’t even know there are 10 years between them. His Autism makes him the same “age”. They enjoy the same things, play the same video games and watch the same movies. When Preston goes to a store while in transition academy (A daily skills school for disabled adults) he ALWAYS gets something for his little brother.
God makes no mistakes. It also confirms to me to trust my gut.
Me: “Hi Mom! The doctor just called and said the baby does not have down syndrome and she’s a GIRL!”
Mom: “Oh Tiffany I am so happy. Thank Goodness!”.
Me: “I am so excited! A baby Girl! YAY! Time to buy Pink tutus!! Will you let everyone up there know we have a healthy baby girl on the way please?”
Mom: “Yes, I will call Grandma first! This is such wonderful news!”
I think about this conversation often. I was one of the many women who had a false positive alpha-fetoprotein test. I had an amniocentesis to check the baby’s risk of birth defects and genetic disorders, such as neural tube defects or Down syndrome. I remember hanging magazine pictures of children and babies with down syndrome on my kitchen cabinets. I was ready to love my baby no matter how she was born & was processing it all in my head.
After the call, I thought the worst was over. I assumed I was in the clear.
How naive? Presumptuous? How wrong I was to think those were the only defects that were on the table. Maybe just inexperienced? Young? Maybe I just thought I was “Untouchable” because my entire family was healthy.
Looking back I see how insignificant I am. How limited my knowledge is. God trumps all of my plans. Life is never what we think it will be.
And yet, everything is perfect.
This was the first of many situations in that I began to realize we are all part of something bigger where anything is possible. Odds are bigger than they seem and I am not exempt from anything. But with each wave, I will flow with it all.
#ThursdayAutismAwareness I will be sharing Autism testimony every Thursday. I have 21 years of experience.
One of the biggest challenges I’ve had in my adult life is the struggle it is to have open communication with schools. Throw in IEPs and teachers who get personally offended when I ask questions and you have an armageddon.
This isn’t an “Autism” post per se because my youngest was diagnosed with Pervasive Development Disorder – PDD. Diagnosis is different from 20 years ago – now there are a million labels under the umbrella of “Autism Spectrum Disorder”.
School stuff causes me extreme anxiety. I’ve been doing IEPs for 17 years (my daughter got her 1st one at 3 years old and she is now 20). I know the policies and procedures and rules and laws. You would be surprised how many people are placed in a position they know NOTHING about and expect the parents to just sign. “Just sign it, it’s fine.”
I was supposed to give you a 10-day notice invitation to discuss the IEP, but I gave you 24 hours. “Just sign it, it’s fine.”
Even though I am about to wave your rights and say you declined to show. “Just sign it, it’s fine”
And we are going to leave everything the same as it was last year since you aren’t here to talk about it and that is what is easiest for us. “Just sign it, it’s fine.”
I have 60 more of these to do – and even though it’s MY JOB – which I wouldn’t even have if it wasn’t for your children, let’s just move along to the next kid. “Just sign it, it’s fine”
Oye Oye Oye~ !!!
Xander is going into third grade and this is the first year he would be eligible to be “held back”. He also has more testing this year than he has ever had in his school career. He is not mainstream (grade level skills) ~ YET. I knew all of this coming into the year and it had a great influence on my decision to walk away from my job. Last year it was difficult to run my business while spending hours a day making sure he comprehended the daily lessons. I know firsthand that early intervention is EXTREMELY important and while he is young, it is the most crucial time to get him caught up. My kids will always be my #1 priority and I couldn’t do it all.
The whole reason I share this topic today is that I had a chaotic morning with school stuff. Xander was moved to a different school a few days ago by accident which spiraled into a whole mess of Speech/Occupational Therapy and regular classes tornado cluster. I reached out to the new teachers, praying I wasn’t the annoying “in their face” parent. Even I hate that parent. But I had no idea what to do and it is my responsibility to get Xander into his classes. The new teachers were so kind. (enneagram 2 or 9’s I think LOL) and figured it all out. And they gave me a small bit of news that the “Just sign it, it’s fine.” lady NO LONGER works at the school! PRAISE GOD!
I walk into each school year with kindness in my heart, wanting to get along and work as a team to get my kids the best education that works for them, and I was terrified this mess would ruin these brand new relationships for the rest of the year.
My point: Hey Autism parents, I see you. I know sometimes it’s easier to get along and to “Just sign it, it’s fine.” and let them read to you what they think is best. But I am giving you permission to ask questions if things don’t seem right. I am cheering you on if you think there is an error OR you have a better idea and you bring it up! It is NOT disrespectful to want to understand what the plan is for our children and honestly, WE ARE NOT THERE TO MAKE FRIENDS. No matter how much we want people to like us, our responsibility is to our children, and their education – that trumps all. The IEP laws are in place to PROTECT our kids. To give the parents an opportunity to have a voice! We all know our children better than anyone else claims to. It’s wicked uncomfortable and causes mass anxiety, but God gave us these kids to protect, defend and set them up for success. I believe in you!
Here we are post-diagnosis. In all honesty, it’s a blur. My mom constantly encouraged me to write things down to have later since I literally was “Paving the way” in the Autism World. I am glad I did too because as I read things I wrote before, I am like “Oh yeah! That happened!”
From here forward things may not be in order, but the knowledge from some may help with the understanding of others. ~ Just trust me ☺
Let’s talk about Trinity.
My daughter is in dual realities. Even to this day. There is a reality we all see and then there is a “Trinity World”. “Trinity World” is a constant theatrical with many voices, characters, songs, and dances. She is always on a stage performing. She hangs out there most of the time. To a random person, she looks like she is talking to herself, very dramatically though. She repeats her favorite parts over and over.
In “Trinity World” she takes her favorite parts from our reality and meshes them together with her happy place to make an adventure story. She is always coloring/drawing different people and places and at the age of 7, she wanted me to write words on her drawings to make a book. I encouraged her constantly to share what was going on in “Trinity World”. I would praise her creativity. I would always ask questions so I too could see what was going on in this duel reality.
Her first 30 books were made of stationary computer paper stuck together with old address labels my mom had given her to play with after she moved. This was her passion. It gave her so much worth seeing us all so interested and kept her creativity growing. The best part of all ~ now when she was talking to herself at the store or park or wherever, I knew what she was talking about.
——
I want to mention here that I was told REPEATEDLY by the “Experts” that encouraging her in ‘Trinity’s World” was the biggest mistake I could ever make as a parent and that I should not acknowledge ANYTHING from it if I ever wanted Trin to be able to co-exist in society. ~ This is a whole Other blog post, but it is important to know for what I am about to share.
One day she was swinging and talking and I was nearby reading on a bench & I hear her performing a book she had just written and so I started saying the words and making the voices and she stopped swinging, turned, and looked at me. I then said that that is my favorite part because that Mister Neilson is such a stinker. She started to laugh & then we laughed together. She carried on swinging repeating the funny part over and over.
Did that just happen? Did I just pull her into my world by acknowledging her world? The girl who ignores all around her & doesn’t always respond to her name, just stopped her swing when her Momma started to play in “Trinity World”. Yes, and it only got better from there.
#ThursdayAutismAwareness I will be sharing Autism testimony every Thursday. I have 21 years of experience.
A pre-painting sketch of a home by Faith L. Sanders, July 1973
After sharing a picture & having many conversations about the cozy corner that I paint in, it reminded me of a poem my Grandmother wrote. We all live in a way that works for us. I remember having a trampoline & slide in our living room & an outdoor intended tent inside. Autism formed “Our way”. Because we are human, our minds might wander to wonder as to what others “think” of our space. I stopped thinking about this long ago – since I knew NOBODY who had 2 autistic children and so our needs were different. We made our house OUR HOME. A comfortable place for us to be a family… That is all that matters.
A poem by Faith L. Sanders, Tuesday, September 13th, 1983
In all honesty, this book isn’t really about Money, but more about the restrictions we place on ourselves to prevent us from being abundant in any form.
I start unpacking all the beliefs and reasons I have “decided” are why I am not as abundant as I would like to be.
Money is only for educated people.
Money is something to covet.
Money determines success.
Money doesn’t grow on trees.
Even as I type these now I see how ridiculous it all is! Then I start digging into WHY I think these things. SHOCKING NEWS AHEAD: it all stems from my two trauma issues I have been writing about this whole time!
I have been lettingtheir opinions of my worthiness control my relationship with money. I didn’t do what I was “supposed” to do in life, so I will never be as financially abundant as they are.
***But, when it comes to “me-being-me unapologetically” in ANY other situation, I love myself whole-heartedly, unconditionally, and with pride. ~ While wearing a ginormous sparkling crown, and excessive amounts of body glitter.
I just keep getting tripped up on the conditional terms of the trauma situations.
I legit hear those people saying in my head: “There isn’t enough money or abundance in the world for people like you.”
Hear. Me. Now.
NOBODY gets to decide if I am worthy enough to be financially abundant or a good enough leader or smart enough or valuable enough EXCEPT ME!!!
I AM TAKING MY POWER BACK.
Fun Fact: I don’t eat fish or seafood. I am a Pisces and don’t eat my own kind 😉 So I have decided that when someone projects their opinion of my worthiness on me, or I am haunted by the lies I’ve let my brain repeat to me ~ I am just going to think of it as being offered fish. “No, Thank you. That’s not for me.”
They can eat as much as they want and share with whomever they want, but for me, it’s just fish and I can get by just fine without it. I’m not in a hateful place, quite the opposite actually. Sitting in my love of not eating fish. I am completely removing the power control from them and turning their beliefs into stinky fish.
It is this simple and ridiculous. Does it sting when people don’t like you? Sure, but it also clears a path for the universe to bring you to your Non-Fish eating tribe. Am I judging people who eat fish? Heck no! Not everyone likes everything and I am sure they might cringe at my hummus and veggie platter.
We get to decide our worth. YOU get to decide YOUR worth. You get to decide your success level! As an Autism Momma, small wins are BIG WINS. Why would I EVER let anyone diminish the hard work my kids do? Sometimes, just getting out of bed is a HUGE win for my friends with depression. You bet your bottom I will be the loudest cheerleader for them!
There are literally NO LIMITS to your capabilities if you can just get out of your own way. Screw what anyone else ever led you to believe. They were just offering you stinky fish!
The image was drawn by Preston Wakeman.Pippi talking with Lumière.
(Cut to everyone hanging on pieces of wood while being drifted to a beach.)
Pippi: Is everyone alright?
Bigwig: (coughing) Barely!
(Cut to Mickey on the beach wringing out his hat.)
Mickey: Since everyone is alright do You know where we are?
(Mort throws up sand from his mouth as soon as he got up)
Mort: New (gags) York?
Bigwig: Does this look like New York to you? (Cut to the area which turns out to be a vast city with skyscrapers and billboards.)
Mort: Yes?
Fiver: It is lucky that we made it to our destination.
Pippi: You’re right Fiver!
Bigwig: Well, what are we standing here for? Let’s go already!
(Cut to Everyone staring in awe at the sights and buildings in the city.)
Ord: Look at all that food!
Mickey: The streets are cleaner than I thought they would be.
Fiver: OH MY GOSH!!
Bigwig: What is it fiver?! A vision?
Fiver: No! I saw a billboard that said diapers and baby wipes are fifty percent off! (Bigwig tried his best not to strangle Fiver)
Pippi: The sights are so beautiful!
Mort: THERE SHE IS! (Cut to the Statue of Liberty while Romeo and Juliet by Tchaikovsky play in the background. Mort imagines the Statue of Liberty winking at him and preparing to kiss him, But before that happens Bigwig slapped Mort to his senses.)
Mort: Sorry.
Ord: Gee there sure are a lot of buildings but no giant apples.
Pippi: Don’t worry Ord! As the person who brought us on this vacation, I am determined that all of our wishes will come true!
Bigwig: Well before that can we stop at a hotel to rest? My feet are killing me!
(Everyone went to a room in a hotel after Pippi gave the clerk a gold coin for payment. Mickey, Mort,
and Fiver are jumping on one of the beds while bigwig takes a shower.)
Mickey: Whoopee!
Mort: Wheeee!
Fiver: All this jumping is making me feel (gags) a bit nauseous… (Fiver threw up on the bed causing Mickey and Mort to hop off the bed. Bigwig with a towel around himself, a shower cap on his head, and a rubber ducky came out of the shower only to find the mess.)
Bigwig: Would you guys stop making so much noise?! It isn’t bad enough that Fiver had to puke on the bed but the constant screaming isn’t going to fix things!
Pippi: Mr. Nelson, could you take these sheets to the laundry room? Here’s some change…(Mr. Nelson grabbed the dirty sheets and headed to the laundry room only to use the change for snacks for himself instead.)
Pippi: While the sheets are being cleaned let’s watch some TV!
Newsman: We interrupted this program for some shocking news. A bad apple in the music industry is making his grand return right here in New York City for a concert after bribing the owner of the Big Apple Theater twenty bucks to host the show there. Stay tuned for more info.
Bigwig: This is boring! I wanna watch some war movies!
Mort: Well I want to watch The little ponies!
Fiver: It feels like there’s nothing on the television.
Ord: Say did you guys hear about the concert?
Bigwig: We already know that Einstein.
Ord: Well why don’t we go to that concert?
Pippi: That’s a great idea, Ord!
Fiver: Hold on Pippi I don’t think that’s a good idea.
Bigwig: For once Fivers right! Who knows if the singer in the concert would be a terrible person or a criminal?
Pippi: So what? We could still have a fun time once we get there today-
Mickey: Uhh guys you might want to see this… (Mickey showed that the date when the concert starts is tomorrow. Everyone except Bigwig and Fiver had a shocked expression on their faces.)
Everyone: WHAAAAAA?
Mickey: I’m just as disappointed as you guys are.
???: “Pssst hey you guys. Yes, you guys come here. (Everyone didn’t know what to do but Pippi not knowing the concept of stranger danger decided to look out the window to see who was calling them.)
** [P.S If someone you don’t know tells you to come here, tell them NO and run away to tell an adult you trust like a parent or a police officer about it!]
Pippi: Who are you?
Lumière: Bonjour my friends, it is I Lumière and I overhear you talking about a concert no?
Pippi: Well what a good coincidence! My friends and I want to go to a concert but the date says it will be coming out tomorrow and let’s just say some of my friends can’t wait for that long- (Cut to Mort chewing on the side of the bed, Mickey Scratching his face with foam in his mouth, and Ord huddled in a corner rocking back and forth sucking his thumb and having bloodshot eyes.) (Cut back to Pippi outside the window talking to Lumière.)
Pippi: -so let’s just say that waiting is very hard for us.
Lumière: Well then madam then you are in luck as I am inviting you to a totally legit not a scam or a trap of some kind early showing of The Kid from New Orleans!
Pippi: Wow sounds great! We’ll be there right now! Do you think you can toss a rope up here?
Lumière: Sure thing madam! (Lumière tosses up a long rope for the gang to climb down with. Pippi grabbed the rope and tied it to the side of the window. The gang climbed down one by one from smallest to biggest and once Ord got on to the rope, the rope snapped and Ord fell out of the window when Lumière wasn’t paying attention, Ord accidentally sat on top of Lumière splattering wax in the process. Luckily the gang remolded Lumière back together soon enough.)
Lumière: follow me to the show! (Bigwig hopped over to Pippi’s shoulder.)
Bigwig: I am very skeptical about the guy, I don’t know why but he seems suspicious- (Mort sings the Among us theme song.)
Bigwig: WILL YOU BE QUIET!!!!! (Mort zipped his lips as bigwig continued to talk to Pippi.)
Bigwig: What I mean is that it could be a trap.
Pippi: Oh nonsense Bigwig the walking candle knows where He’s going. (Bigwig hops off Pippi’s shoulder and follows them on foot.)
Bigwig: (sigh) (Pan over to the sign on the building saying Big Apple Theater.)
My daughter Trinity was born on January 16th, 2002 at 12:34 pm. As I held my daughter for the first time and saw a perfect little bundle of joy I couldn’t help, but imagine what it was going to be like as a first-time Mom. I couldn’t wait to buy her a tutu and take her to dance class or to paint her nails and talk about love. All I had ever wanted in life was to be a Mom and I was excited that it was about to begin.
Since Trinity was my first child it never occurred to me that she wasn’t acting “normal”. I thought she was the best creation on earth, perfect in every way, and I did what I thought everyone was supposed to do. I breastfed, made all of her baby food from scratch, read to her every day, took her to mentally stimulating places like the park and the zoo, and made sure she received all her immunizations. I sat back and smiled as she learned to laugh, and even say “Mum Mum” and “ba ba” at six months of age.
Then one day she changed. She didn’t want to play “with” me. She had nothing more to say, she was far away in another world. She didn’t seem unhappy, just “somewhere” else. At this point, I still wasn’t alarmed. I just assumed it was another stage. Maybe she was watching angels in the corner or while staring at the ceiling fan she was half in Heaven and half on earth. I found it peaceful and majestic. I thought she was taking in a great new world and absorbing all the minor details in wonderment.
Then one day my mother says to me “I think something is wrong. I think you should ask her doctor about her milestones.” It’s one of those moments in life when you remember exactly where you were and what you were doing, wearing, and eating. I was in Arizona on the back patio of my parent’s winter getaway house. Mom had bought a huge pot of Beautiful Geraniums. It was what we were talking about before she brought it up. Trinity was twirling in the grass nearby.
I sat in silence, tears running down my face. I knew if my Mom was saying it, it had to be true. Later that week I found out my Mom isn’t’ the only one who thought something was wrong. My mother-in-law had sent my husband at the time information regarding Aspergers. I believe she wasn’t quite sure of how to bring it up to me I suppose. I’m not sure how I felt about that exactly, but I do know a woman’s child is something she would fight tigers for, and in a situation like this, you don’t want to say “I think your kid, that has become your whole world, is broken.” Today I embrace her for trying to help gently by talking with her son. Her heart is always in the right place, but at that time I was too overwhelmed with how my entire existence could possibly change.
#ThursdayAutismAwareness I will be sharing Autism testimony every Thursday. I have 21 years of experience.
I wander through this "waiting period", sharing life blips, autism testimonies, self discovery processes and growth inspirations ~
Until the Lord lets me know what I am to do next, I would love a cup of coffee.
acurbsideprophet 