Hello to all the CUL3 warriors and their super parents.
My name is Christelle, and I’m the proud mother of a champion named Nathan.
Initially, I set out to write about Nathan’s educational journey since his toddler years. But as I began writing, I realized the real focus of our story is about finding balance and learning to 'let go'—a challenge we are currently facing.
Nathan is ten years old. Since pregnancy, he has experienced developmental delays in all areas, which became more pronounced over time.
When he was two and a half, we enrolled him in a small nursery school that welcomed children with developmental difficulties. The staff adapted to meet his needs, and he stayed there until he was five years old. We had hoped that by him spending an extra year at that school that he would be ready for mainstream school with classroom support by age seven. The school shared this hope, but during his third year, the team informed us that Nathan wasn’t progressing as expected. They explained that he needed more individualized attention and specialized teaching methods, and that staying another year wouldn’t make a difference. They told us, "If you want what’s best for him, you have to accept special education." This was very hard for us to hear, but we were encouraged to visit some of the specialized schools. We realized that if these dedicated professionals, who had invested so much in him, were advising this, it was because they truly believed it was the best path for him.
So, at the age of six, Nathan joined a highly specialized school. We quickly completed the necessary formalities, which was fortunate because the school we chose has an excellent reputation. Nathan soon felt at home there. He spent two years in a class with children who had mild to moderate intellectual disabilities and children with ‘dys’ disorders. After two years, he spent another two years in a class with children who have 'dys' disorders, specifically for language disorders. Nathan suffers from a language delay and stuttering, so it was very good news that he joined this class; we were delighted with the progress he made.
In recent months, however, things have become more challenging. After Nathan's CUL3 genetic variation was discovered, the hospital conducted a comprehensive multidisciplinary assessment, which revealed that he had an IQ of 75. (I think it’s also important to note that they used a 'verbal' test, despite his speech disorder, which might have skewed the results. While he might have known some answers, his speech disorder could have prevented him from expressing them.) The team was surprised to find that Nathan was in a class for ‘dys’ disorders, having assumed he would be in a class for children with mild intellectual disabilities. Based on their assessment, they recommended this type of class, believing that Nathan might feel out of place in his current class, potentially affecting his self-esteem. The school had been waiting for these results, and when we shared them, we explained that we believed Nathan was in the right class. He wasn’t showing any difficulties compared to the other children, adored his teacher, enjoyed doing his homework, and had friends. We saw no reason to change his placement; he seemed perfectly capable of continuing in his current class.
At the same time, however, Nathan had begun to strongly object to the numerous medical and rehabilitation services appointments he had weekly. Alongside school, he was seeing a neuropsychologist (who he loves going to), going to a pool session with a physical therapist, and seeing an occupational therapist and a speech therapist specializing in stuttering. The latter two providers are very kind, but because they especially challenge him with his difficulties, he stopped wanting to go to their sessions. It should be noted that Nathan also had a tough year, having had eight multidisciplinary evaluation sessions in just two months.
Due to his strong objections to those services, the speech therapist paused his sessions for a few months, and the occupational therapist adjusted to meeting him at school every other week. This allowed him more time to just play at home after school. However, even with these changes, the stress remained, eventually leading to tears when speech therapy resumed. I can still see him in the car, begging me not to take him. As his mother, it was heartbreaking.
As we approached the end of June/beginning of July 2024, things seem to become even more challenging. The school informed us that they decided to transfer him to a class for mild intellectual disabilities because his learning pace is significantly slower than the other children in his current class, and the gap is widening. They also mentioned that they noticed him becoming more anxious. We explored the possibility that the methylphenidate treatment he started after his evaluation might be exacerbating his stuttering. However, this isn’t the only issue the school has observed. The team reported that he now frequently has sweaty hands and often seeks the presence of an adult for reassurance during class—behavior that’s new for him. This news came as a shock to us; we hadn’t noticed these changes. Later, we learned that methylphenidate can significantly increase anxiety, which might explain the changes in behavior observed by his teachers.
Additionally, the speech therapist, who recently resumed sessions after a few months' break, is now considering pausing therapy for an entire year. She explained that if we continue to push him into therapies he resists (he's been in some form of therapy every week since he was three months old), he may develop such negative associations that he could refuse similar therapies as an adult. These sessions are not just unproductive; they could be harmful. As a nurse, I consulted a colleague who has experience in neuro-pediatrics, and she pointed out that Nathan is approaching pre-adolescence. She emphasized that if we don’t respect his wishes now when he tells us he wants to stop appointments, he might refuse to listen to us during adolescence, making it harder to build a supportive relationship with him. Her straightforward advice was, "Listen to your son!"
It's incredibly difficult. For 10 years, we've fought tirelessly for Nathan to “catch up,” to have a chance at a job, and to be independent as an adult. Now, life seems to be telling us to slow down and accept that his pace isn't what we had hoped for. We’ve been told that if we agree to ask less of him, maybe in time, he'll redeploy his skills on his own. We understand the reasoning, but it's terrifying to let go.
Here we are today, after fearing for our son during pregnancy, after spending nine years not fully understanding what was happening to him, after accepting—through tears—that he couldn't attend a regular school, and after receiving the news of his genetic variation just before Christmas, crying for days. Now, we’re being told that we are asking too much of him and that, for his sake, we need to let go. Despite all the mountains we’ve tried to move for him, we can’t fight the cognitive challenges this developmental disorder brings. We can provide him with resources to mitigate its impact, but we can never control the pace it dictates. I haven't felt this overwhelmed since we first learned about the genetic variation.
Now that it’s September, we're in a position where we can have a reduction in his expenses for the year. I've stopped arguing with him about his medical appointments. I’ve told him that he can put as much effort into his sessions as he wants, and if they don’t go well, then that is up to him. I even invited him to tell the speakers that he didn't want to see them, which he did. He seemed surprised, as I’m usually quite persistent. But since then, the sessions have been going surprisingly well. Did he just need me to give him the freedom to make his own decisions about his treatment areas?
Now we're waiting to see how things unfold in the next few weeks, but we're ready to listen to him and adjust his care if necessary. His well-being is our top priority, and working together with him as we move forward is what matters most.
In Belgium, the new school year started at the end of August, and we’re still getting accustomed to the new program. We’re noticing that his new teacher might be underestimating his abilities, as she’s assigning schoolwork he completed three years ago. We’re planning to discuss our concerns with her and will continue to monitor the situation closely.
How are your children’s schooling and rehabilitation therapies going? Have you found ways to give them more autonomy and ‘let go’?
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