Our Journey to Educational Autism | Where It Began with The Mom Blog WI
Our Journey

Our Journey | How It Began

*Today, we finally officially enrolled our now 3.5-year-old son Jackson in the Early Childhood Education Program. He’s been identified as having educational autism and currently functions across the board at a 22-24-month-old level. He’s currently 42 months old.*

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It honestly kills me to look at these tweets from nearly a year ago…

We thought we were making so much progress back then. We thought the Birth to 3 Program would be the answer we needed. We had been told we would have a speech therapist come to our home and help Jackson on a weekly basis. There had been talk about different therapies and so many resources, even though we only had about 3.5 months until Jackson turned 3, at which point he would transfer into the school district’s system and they would take it from there.

Little did we know that the Birth to 3 Program and our contacts would just fall of the face of the earth for the last month and a half and not return our calls. Jackson never met with a speech specialist from Birth to 3. They didn’t focus on his speech, even though back then he had regressed to only using 1-word phrases and wasn’t responding to his name.

They focused on his behavior; our reactions to his behavior and ways to help him work through behavioral outbursts. They barely scratched the surface. They put a bandaid on a much bigger problem and didn’t bother digging any deeper than the surface. Which looking back is incredibly frustrating, but that’s in the past and I’m getting ahead of myself…

I wanted to start at the beginning.

These tweets were from the day we had finally, successfully enrolled our son in the Birth to 3 Program…

These tweets were posted on March 13, 2019, the day we officially got Jackson enrolled in the Birth to Three Program.

“Today, we finally officially enrolled our toddler in a Birth to 3yo Program. Usually, all that’s needed to ensure a child qualifies is a 25% delay. Not only does our son have at least a 25% delay, but he’s also only communicating and expressing himself at an 11-17 month-old level.”

“He’s 31 months old now. It took 3 “routine” Well-Child visits, an additional unscheduled visit to our physician, multiple phone calls and constantly expressing our concerns for someone to finally take us seriously, see what we are seeing and take action to HELP US help our son. “

“At our 3 previous Well-Child visits, when expressing our concerns, we were told, “Ignore the bad behavior,” “Reward the good behavior.” “Try time-outs; 1 minute for each year.” “This is just something children usually grow out of…” “We will re-evaluate at 36 months.”

“I fear what would’ve happened if we had waited ANOTHER 6 MONTHS to address this issue and begin this process, which has taken 3 MONTHS to get this far, and we aren’t even working on helping our toddler yet; we are just evaluating and watching and telling them what’s going on.”

“I fear what would’ve happened if we had let our physician quiet our fears and just decided that, “This is something children usually grow out of…” I fear how much further behind he would be if we just waited and did nothing and accepted that, ‘This is just a hard age.'”

“NEVER, EVER stop ADVOCATING for your child. YOU are their voice! Don’t EVER let someone tell you that you should just wait and see if your child, “Grows out of this.” This is your child! If you have concerns and someone isn’t taking you seriously, validating your concerns or helping… “

“If you have concerns about your child, their development or possible delays and no one is taking you seriously, listening to your concerns or helping you HELP your child, DON’T GIVE UP! If I had given up a year ago, 6 months ago or 3 months ago, my child would’ve suffered.”

“This applies to everything regarding your child; their health, their growth, their development, their speech, their behavior, their mental health, their school, their grades… The list goes on and on. It’s our job as parents to advocate for our children, because they can’t.”

At this point, we had already been fighting for nearly 6 months. And I use the word fighting because it was. A. FIGHT! It felt like an uphill battle to be taken seriously and it still does; every single day. It has been a struggle for over a year, now.

We began really noticing something wasn’t right with Jackson in September of 2018. Jackson had turned 2 years old in July. We had moved to Northeastern Wisconsin in May and set him up with a family care physician. His first appointment was in September and we brought up our concerns about some behavior issues we were having at home that were alarming to us.

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Jackson was very wild, hyperactive even. He never stopped! The only way to truly calm him down was to sit him in front of the TV. He wouldn’t sit still for meals or activites. He didn’t like to sit and eat with the family or group at daycare. He loved to run around it circles; he was always moving. It was as if his body was on constant hyperdrive and he didn’t know that his body actually needed to decompress and calm down…

He also had an obsession with strings, hair, anything sensory related. Everything went in the mouth, especially things that were not meant to be in his mouth. He could spot the tiniest little fleck of something on the floor and he had to pick it up. He loved to line up tiny pieces of papers or shrivels of whatever on the window sill or table. He also loved to collect things and played very repetitively with toys or objects…

We were told this was just normal toddler behavior.

Toddlers usually grow out of it by three years old…

It was also as if Jackson had no understanding of the consequences of his actions. He acted without thinking, so impulsively and had no regard for other’s emotions and did not react or even acknowledge when his actions hurt others. We had gotten reports from daycare that Jackson was throwing toys and hurting other children and that he seemed to not even know or understand what he had just done…

He had no concept of stranger danger and wasn’t afraid of getting lost or getting hurt! He would throw himself off of furniture and play with outlets and run away and wander, or run up to strangers and hug them. We also had a lot of trouble with discipline, listening to directions, and respecting boundaries. We were constantly telling Jackson the same things, over and over and it seemed he never “learned” from his mistakes…

Aside from all of that, Jackson was also a terrible sleeper; he always seemed tired and never slept more than 10 hours a night. He never had, even as a baby. He also struggled a lot with transitioning from one thing to another, which usually ended up in a meltdown on the floor, and he had a very short attention span. We couldn’t get him to concentrate on anything for any length of time before the hyperactivity kicked in and he was off to another thing. He also played with toys in nontraditional ways or in ways that the toys weren’t intended to be played with.

We were told to just ignore the “bad behavior” and reward the “good behavior.” Use time-outs, one minute for every year of age.

This was just a hard age…

It seemed like Jackson was always in his own little world and we were constantly trying to get his attention or try and make a connection with him. He was so unreachable at times. It seemed like he didn’t understand what we were saying to him and we were having trouble getting Jackson to make eye contact. When we used time-outs, Jackson would just cry and he had no idea why we were making him sit there or what we were saying to him when trying to bring him out of time-out. We couldn’t rationalize with him or show him logic or reason.

Maybe we were expecting too much of our two-year-old…

“Ignore the bad behavior. Reward the good.”

But it wasn’t just ‘bad behavior’ …

I think that was the part that bothered and frustrated me the most.

Jackson wasn’t being bad for the sake of being bad. He wasn’t being naughty. He was trying to communicate with us. He was frustrated and there was this huge language barrier that we couldn’t get through… it was like there was a connection missing and we couldn’t figure out how to help him. Our plea was just to want to know how to HELP HIM. All we wanted was to be able to help our son.

We left with no answers and no resources, even though all we desperately wanted was some guidance.

We went back in December when things got worse.

It seemed like Jackson was regressing; we noticed he was using fewer words, having trouble telling us what he wanted, and it took so much to get his attention these days. No affliction in your voice would gather his attention or pull him away from his own little world. When he was doing something, it was as if he couldn’t hear you.

We wanted to know when was the last time Jackson had a hearing test… was it really the day he was born, over two years ago? Prior to chronic ear infections for 10+ months? Yes.

“Well, does Jackson respond to loud noises, like a fire alarm?”

Yes, of course.

“Does he turn and acknowledge you when you’re talking to him?”

Well, yes. Eventually, but it takes 4 or 5 times for him to finally acknowledge us.

“Well, then it doesn’t really seem like he has a hearing problem. This is just a hard age. Ignore the bad behavior; reward the good. Use time-outs. They usually grow out of this… Let’s re-evaluate in 6 months at 3 years old.”

We left again, feeling completely unheard and unvalidated, frustrated and- honestly? A little crazy! All we wanted was to know how to help Jackson manage his emotions. We wanted tools to be able to help him… We went home with even more unanswered questions and even fewer resources.

Not even a month later we noticed Jackson wasn’t responding to his name. It took us 6 or 7 tries before he would even remotely look like he was listening or hearing us. We had seen major regression in his speech; he now only used one word at a time; cup, car, yes, no. His speech was also very limited, in addition to all the other issues we were still having.

At this point, we finally were told that they would make a formal recommendation to the Birth to 3 Program, but we could’ve made our own personal request through the website, and even his daycare provider could’ve made a request, who had the same concerns as we did.

I wish someone would’ve told us that from the beginning…

Fast-forward to March of 2019 and after multiple testings and observations, it was determined that Jackson had at least a 25% delay and that he was only communicating at an 11-17-month-old level…

He qualified for the Birth to 3 Program.
He was 31 months old at that point when they evaluated him.

On March 13th, 2019, we officially had him enrolled in the Birth to 3 Program, and we began to second major part of our journey.

To be continued…

It’s been on my mind for quite a while to get all this out, write it down and put it out there in hopes that it helps someone or gives strength to a fellow momma or family going through the same thing or something similar.

If even one parent finds comfort in this, knows they’re not alone or draws strength from this to keep advocating for their child, then it’s all worth it.

I’ll be working on building up to the point where we are now with our story and our journey with Jackson. If you’d like to follow along, make sure you sign up for email alerts for new blog posts and follow along with The Mom Blog WI on Facebook! And if you have a moment, take a second to share this story in hopes that it reaches another momma who needs that bit of strength to keep going, to keep fighting for her child.

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  • Beth

    What a frustrating journey…I’m so sorry you’ve had to fight to be heard. It shouldn’t be that way with all of the knowledge and resources we have these days. It takes a strong mama to not take no for an answer! Doctors should realize the instincts of a parent can be far more accurate than “observations.” This will be so helpful to other parents who may be doubting their own gut feelings and take no for an answer.

    • Tresa | The Mom Blog WI

      Hi Beth!

      You’re so right; for all the talk there is that early intervention is key… no one is in a real big hurry to intervene, which is the most frustrating part of all. We are incredibly thankful that we’re finally getting some answers before it’s too late. There’s been a 10-month regression in the last 6 months, which is very concerning but it’s finally what we needed to get him into the Early Childhood Education program. He starts right away on Monday and we are so excited for him. He’s so incredibly smart and intelligent… There’s just some connections missing and we aren’t sure how to help him.

      Thank you so much for reading and commenting. I too hope that this will give other parents the strength they need to fight and advocate for their children against the judgment and lack of encouragement from medical professionals… If we had given up a year ago or even six months ago, I fear for how far off the mark we would be now.

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