Julian’s Journey
I have had the pleasure of being a part of the lives of Julian and his mother. I fell in love with both of them and eventually committed my life to them. I urged his mother to write something as I hate to see everyone struggle. The challenges are real and have been financially draining, but worth every moment of my life with them. Here is what she wrote:
Julian also has Autism Spectrum Disorder level II. Even though they don’t really identify with levels anymore, they did at the time of his diagnosis in 2022, and I feel like it is very important to differentiate because his Autism is more than just “quirks” and some social awkwardness. It affects him across all areas of life and does not always feel like a “superpower.”
In addition to ASD, Julian also has Tourette Syndrome, ADHD, OCD and anxiety disorder. On the outside, Julian looks healthy, but his brain tells another story every day. Julian requires substantial support to navigate the daily demands of life, especially in school.
When Julian started Kindergarten, it was very apparent that something wasn’t right. He was not meeting learning milestones, constantly overstimulated, eloping from his classroom, exhibiting aggressive behavior toward himself and objects around him at school. He also started having motor and vocal tics which led to his diagnosis of Tourette Syndrome.
He was labelled “a “bad kid” and the calls to pick him up from school started coming almost daily. At 5 years old, he was being suspended repeatedly, and I had to fight to get them to do evaluations so he could have an IEP.
I was desperate and decided that It was in Julian’s best interest to pursue medical intervention via medication and therapy. After a rather grueling battle with his school, he was transferred to another elementary school where he was given proper support and LOVE. While he still had many struggles, he blossomed there over a 2 year period, learned to read, write and even made friends and found educators he trusted.
Still, it was apparent that Julian needed more help regulating his body and brain so he could be safe at school. So, at the suggestion of his psychiatrist, we decided to try another medication often used in treating Tourette, and aggression in children with Autism.
Everything was good for the first 3 months, but in July of 2024, my child woke up different. He was sad, overly emotional, and began having random and uncontrollable rage episodes that he would have no memory of after.
We later found out that the new medication interacted with another he was taking, which caused him to develop something called akathisia. So, we discontinued the old medication in hopes that things would get better. They did not.
For most of the 2024-2025 school year, Julian was suspended for these aggressive episodes, during which he made “verbal threats” (complex verbal tics and coproplalia) which were all clear manifestations of his disability.
It was recommended he be moved to an alternative school in a smaller class for “emotionally disabled” children.
We were been told that since Julian was supposedly performing on grade level in academics, he would not qualify for any of the other Autism programs provided at this alternate setting.
Of course, there was a waitlist, and since it was so long, it was medically necessary to move him to modified/shortened school days.
The theory was that the constant academic/social demands were too great for Julian’s nervous system to handle.
While it did help, the financial strain of having to cover the cost of daily care and transportation was not sustainable.
A spot finally opened up at the alternative school, so Julian began there in Summer 2025. We had such high hopes he found a place where he could heal and thrive.
We were wrong.
Despite the small class size, there is constant chaos due to each child having their own challenges. Julian has developed debilitating stress and anxiety about school.
He hears bad language daily, which unfortunately triggers his vocal tics (coprolalia). He has been suspended a few times already this school year for his use of "inappropriate language, racial slurs and aggression.”
Julian’s remorse and shame around these incidents is painful to witness. He is constantly saying he hates himself, can’t control his body, hates his brain, and wishes he could disappear. He tells us he doesn’t deserve anything and is the worst kid ever, and that he just wants to be normal.
This is NOT an issue of a defiant child who enjoys hurting others and disobeying adults. This is a nervous system in crisis, NOT a behavior issue.
Julian is now regressing across all areas. His communication skills, tolerance to stimuli, independence, and participation in most activities (even those he loves) are suffering. His sleep is suffering.
We have brought our concerns to his doctors, and have begun the process of weaning him off the medication that I believe started all of these issues back in 2024. Discontinuing this medication has many side effects, including increased aggression, depression, etc. and these can last for months after stopping.
The constant stress of school phone calls, suspensions/early pick-ups and the looming threat of losing my job has taken its toll. My own mental health has taken a nose dive and we are, unfortunately, out of options.
Julian is on a waitlist for a bio-behavioral health inpatient program at the children’s hospital, but we are unsure whether this is even the right route to pursue. If he does get admitted, it is a minimum 8-week stay with mandatory daily parent participation for 4 of those weeks. The parent participation hours do not coincide with visiting hours, which means TWO trips daily to the children’s hospital if we take this route.
There are also many other concerns with this option. Julian’s issues typically only present in the school environment and not at home. At home he is safe, happy, and well cared for.
His psychiatrist has recommended returning to shortened school days again or taking him out of school on a medical leave to focus solely on attending his various therapies, and regulating medications.
This would allow his body and brain to rest, and then he can resume school on a modified basis when he is in a more stable place mentally and emotionally.
Either option means that I would need to stop working at my current job for an extended period to care for Julian.
The prospect of either of these things on the horizon for our family is difficult to take, but this is the reality of having a child with an invisible, but very real disability.
We do not qualify for SNAP.
We do not qualify for SSDI.
While we do have permanent OPWDD eligibility and receive respite through this program, respite hours can’t be utilized during school hours, because the state feels that it is the school district’s responsibility to find an appropriate alternative setting for that child if they cannot be in school. If ONLY it were that easy.
There are no appropriate settings for Julian in our area, other than what the school would call “homebound learning.” Again, this means I would be unable to work as I would have to stay home with him.
We also have to face the reality that we’ll most likely have to find another place to rent. My current lease is contingent on my employment, so my lease will end if my employment does.
I am familiar with the feeling of shame in asking for this kind of help. I am also familiar with the shame that comes with parenting “one of those kids” who everyone has their theories on how they would handle if they were in our shoes.
Nevertheless, I will do anything to help my son, so here we are.
Our hope is to raise enough money to alleviate some of the financial burden for a few months so we can do what is best for Julian.
I am sharing what we are going through in the hopes that those who truly know Julian for the amazing, loving, and wonderful boy he is, can find it in their hearts to help him get what he needs, and to share so that others can, too.
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