On March 13th, 2019, our son was officially enrolled in the Birth to Three Program, after nearly 6 months of trying and advocating, and we began the second part of our journey…
Hi there, my name is Tresa and I am the mom blogger behind The Mom Blog WI and the Our Journey Series!
Our Journey to the identification of educational autism (so far) officially began on March 13th, 2019, but we struggled for months before that to be seen by a professional who would take our concerns seriously. Our son Jackson is very sensory-seeking and struggles with sensory processing issues and obsessions, and he’s also severely sensory-sensitive to the point where we feel we are traumatizing him.
This is just a part of Our Journey, and I share it in hopes of even reaching maybe one other momma or family that is struggling or will struggle with the same things we did; advocating, feeling heard, struggling through it all.
If you’re struggling to get your child the help you know he or she needs, if you’re feeling completely unheard and unvalidated or hopeless and you’re not sure where to turn, my inbox is always open!!! Don’t ever give up, and keep on Advocating Like A Mother, cause no one does it better!
At this point in our journey, we had seen a HUGE regression in Jackson’s speech. He was only using one-word phrases and rather than express himself or his needs verbally, he relied on non-verbal cues to communicate with us. He wasn’t responding to his name… He was in his own little world.
A post of mine recently came up in my memories from February 10th, 2019 on Facebook…
The post says this;
“This. This is absolutely eye-opening and it comes timely.
We are struggling, (yes, I am not afraid to admit that.) We are struggling with our son acting out, not listening, not hearing us or acknowledging us and many more things. And it’s not just that he isn’t listening. People will say that he’s just 2; this is just a hard age. This is not just 2.
He isn’t ignoring us. It’s not that he can’t hear us or doesn’t want to listen because he is a toddler. He’s not just being a toddler. This is just the way he is; there are times when he is completely unreachable. We will shout his name multiple times in a row and he just will not hear us. He is in his own little world, and it is not adorable or cute; “Awe, he’s in his own little world.”
It’s impossible and it’s alarming and we just can’t seem to reach him or get him to acknowledge us some times, more and more often it seems. And it’s unbelievably frustrating. And it makes me incredibly angry some times. It makes me feel like he does it on purpose or that he’s not listening to me, but I know he isn’t.
There are days where it makes me feel absolutely helpless and completely crazy. There are days where I am just at wits end and I can’t take anymore! There are days where I worry about him and am a mess because I have no idea how to help him or where to start.
This is just the way that he is… I can’t change him. This is my son. I can’t make him become something or someone else. And I just need to love him the way that he is right now, no matter how hard that is somedays. This may not be what I thought it would be, and he may not act or respond the way I would like him to, but he is mine and he is amazing. And he may just teach me to be who I am ultimately supposed to be.”
At this point in our journey, I was struggling.
I was struggling with Jackson’s behavior. I was struggling with trying to figure out what was wrong and how to help him. I struggled with Jackson being in his own little world, a world that I couldn’t figure out how I fit into. I was mourning the loss of a normal childhood for Jackson and a normal relationship with my son, or any sort of relationship that felt like a real connection at that point. We couldn’t get Jackson to make eye contact a lot of the time… It felt like we were constantly trying to connect with Jackson or get him to let us in or focus on us and we just couldn’t figure out how.
We were struggling, as we still do, with Jackson acting out, but it wasn’t typical acting out or typical behavior. It wasn’t “bad” behavior. This child doesn’t have a bad bone in his body. But it felt so familiar to me, like I had lived through this sort of thing before. Jackson’s behavior reminded me immensely of the behavior of the dog our family had when I was younger.
His name was Max. Maxi… My mom and dad had adopted him from a rescue and he was just a pup. A mutt, mostly; we weren’t really sure what breed he was and neither was the rescue. He had grown up a stray on the streets and was obviously malnourished, but he was such a precious baby. So sweet and so loving. He knew when there was something wrong with you and he would put his face on your hands or in your lap and he would just be with you. He was literally the sweetest pup ever.
When we first brought him home, everything seemed fine. But then Maxi got really sick shortly after we brought him home. We honestly thought he wouldn’t make it. He didn’t even look sick at the rescue.
He recovered, but after a while, Maxi started to lash out at our other dogs, for no reason. He was attacking them with absolutely zero provocation; nothing has happened that would have elicited such a violent response, and he wouldn’t stop. And then once he did finally stop, once we pried him away and broke it up, he had no idea what was going on. It was as if he had no idea what had just happened or why he had done what he’d done or why he’d done it. He couldn’t comprehend why we were upset. I remember I would take him to my room to keep him away from the other dogs and just lay there with him and it was as if he had already forgotten about what had happened and moved on completely.
As I watched Jackson and we struggled with his behavior, as I tried to understand what was going on, I felt like I was watching Maxi. Jackson had no idea why he was doing the things he was doing. And most of his actions were totally unprovoked, and still are. There was no reason that I could ever see for why he reacted so strongly to what seemed to be nothing. He had no concept of understanding that what he had done, such a throwing a 100% metal Thomas train at Mommy’s face or running a toy into someone’s shins, was going to hurt people. And of course, after the fact, he didn’t understand what we were saying to him.
Time-outs were completely ineffective. Jackson would just cry the entire time and no matter how hard we tried to “reason” with him, he didn’t seem to understand why we were putting him in time-out or that it was related to anything that had previously happened. He had no concept of cause and effect, no understanding that there were consequences to his actions.
He was very unaware of his surroundings and his environment, and therefore his actions. It was like trying to fill a boat with a hole in the bottom; everything we said just kind of fell to the wayside and we weren’t actually making any sort of progress or meaningful connection.
I was constantly being told to ignore the bad behavior, reward the good behavior, even though all I was asking for was help! I wanted to be able to help Jackson, to help him navigate whatever was going on. I wanted resources or support, not to be told to just ignore this phase and that he would outgrow it eventually.
I wish I could go back and show that doctor Jackson’s IEP and his tests and everything else that stands to reason that he has NOT outgrown whatever is going on.
I’m not here to wallow, but I was feeling so helpless. So out of control, so unheard and unable to do anything to help my son. I felt like no one was taking me seriously.
So finally I made another call to his doctor and it took a few weeks, but finally we were told about the Birth to Three program and after evaluating, Jackson met the requirements to be a part of the Birth to Three program on March 13th, 2019.
Birth to Three and Swim Lessons
Shortly after starting the Birth to Three program, we also decided to enroll Jackson in swim lessons at the YMCA beginning mid April…
At the time, Jackson was absolutely terrified of water, swimming, showering, having water dumped over his head. When Jackson was ten-months-old he started having chronic, recurring ear infections for the better part of the next year, even after having tubes surgically placed shortly after his 1st birthday.
Anytime we talked about the pool or swimming or showering or dumped any amount of water on his head, he would scream and cry and you would think we were torturing him! He still to this day… you would think we were skinning him alive once a week when we break down and have to wash his hair. I actually worry that I will permanently traumatize him or give him PTSD just by washing his hair. Something about the water over the front of his head or in his ears terrifies him.
So we sought to end his fears and help him get acquainted with swimming, hoping maybe it would help with a few other things like listening and give him an outlet for his never-ending physical energy!
After enrolling in swim lessons, we took him to the YMCA twice before swim lessons officially started. The first time, he screamed and cried and clung to me like a wet cat for almost the whole hour we were there. We gave up about 30 minutes in and left.
But the second time?
I had never seen anything like it.
It started the same as before; he screamed and cried and clung to me like a wet cat. But after a few minutes and after taking him into deeper water, he calmed down a little bit. He was wearing a floatation device, which he now calls his “baby sharks” and we sing the Baby Shark song every time we put it on.
It was miraculous.
We are starting swim lessons next week and so we’ve been going to the local gym and introducing our little man to swimming. Last week was horrific. He screamed and cried and he was terrified. But by the end of the night he didn’t want to leave.
Tonight started about the same, though not as strongly. Halfway through our time in the pool, our son was swimming, with a chest and arm floatie, all by himself.
I was SO. FRICKEN. PROUD!!!
You have NEVER seen a prouder Momma. I almost cried, right there in the deep end of the pool, with all those people watching. I was ecstatic. He was floating all by himself with the help of the floatie and he was kicking and keeping his head above water. It was amazing to see.
Today was an amazing, glorious day. And I loved every single second of the time I got to spend with my two favorite guys.
And by the end of our visit there, this child did not want to go home. He was treading water with the help of his baby sharks, completely unassisted! I wish I had a picture of that day, because it will forever be the day that so much changed!
And so began swim lessons…
And shortly after beginning swim lessons, maybe about two or three weeks in we noticed a HUGE speech explosion! Jackson was using two- and three-word phrases again. He was more crisp and clear and he was using more words!
Although we still heard a lot of baby talk and babble, and that was pretty much where he stayed speech-wise for several months. He still wasn’t really responding to his name and everything else remained the same. We were still struggling…
And as I sit here and sift through memories and old posts, I am seriously starting to cry because- oh my gosh, I just can’t believe we’ve made it this far. I can’t believe we’ve come so far and that we had so far to go. And I want to cry for all the rest of the way we still have to go.
I don’t usually complain about it or dwell on it, but it’s hard.
This… is hard.
And most days I muscle through it all and I’m so busy keeping my head above water that I don’t even think about where we once were or how far we’ve come or what all else we will still have to fight and advocate for…
But man, this is hard stuff.
I’d love to tell you that the Birth to Three program was amazing… but sadly, for us it wasn’t. We were told Jackson would have access to a speech therapist. We were told we would have all sorts of resources and support, even though we only had about 4 months before he turned three. We saw none of that.
They primarily focused on helping us work through Jackson’s behaviors and how we could respond in order to maybe help him with transitions, which he struggled a lot with back then. And then the last month our contact completely fell off the face of the earth and we never heard from them again.
The Birth to Three program was pretty much just a way for us to get into the system and transfer Jackson into his school district once he turned 3 in order to develop an IEP, which we are eternally grateful for.
The next part of our journey begins in June of 2019, when they began evaluations to determine if Jackson was eligible for assistance through the Early Childhood Education Program and to see if he had any areas that were determined severely lacking or within deficit range.
Hi there, and thank you so much for following along on Our Journey through educational autism as we find our way through it all! I’m Tresa, the mom blogger advocating behind my son, Jackson and the creator and blogger of The Mom Blog WI!
In case you missed it, you can check out the beginning of Our Journey here.
The idea to share our journey took hold after a long hiatus from blogging. My life was dominated by what was going on with Jackson and because we didn’t have a clear diagnosis, I felt like I couldn’t share what was going on. We still don’t have a clear idea what’s going on. All we know if that we have an educational autism identification, which is not the same as clinic autism, and one does not warrant an identification of the other. We also know that Jackson struggles a lot with sensory issues, and that these are perhaps what keeps him from progressing socially. He currently functions at a 22-24-month-old level. He’s 42+ months old now.
My hope all along in sharing my experiences through The Mom Blog WI has been to empower others who are maybe going through similar situations. To let them know they aren’t alone, and if even one other mom takes comfort in knowing that there is someone else out there struggling like she does with the same situations, then that’s good enough for me.
So thank you so much for following along and sharing and supporting us with your kind words as we find our way through this journey!