As a parent of a special needs child, I look forward to the periods of platitude. Every developmental stage is an uphill climb that seems to take forever. So when my child hits a plateau and can thrive in an age-appropriate developmental stage, I relish in the peace that comes with it. I have learned to relax during these periods until it’s time for the next developmental growth challenge.
Well, during the spring of 2021 when we had finally settled into our “new normal” and were thriving in a pandemic world, BOOM!
I started to notice my usual rule-following, kind-hearted son becoming more irritable out of the blue. And when I say "out of the blue," I mean over things that were never an issue for him in the past. He seemed more tired than usual, he was more sensitive to touch, and even though he has a speech delay, he is verbal — but he really did not want to talk at all.
[Related: Raising a Black autistic boy in America]
My husband, his teachers, and his therapists all saw this dramatic change in him. For weeks, I chalked it up to the time change. He has always had a hard time adjusting to the bi-annual time changes, especially when we spring forward, so I just assumed this particular year was just a bit harder for him. After weeks of dealing with his attitude, I finally spoke to his pediatrician. She referred me to an endocrinologist. After blood tests and an exam, the endocrinologist looked at me and said, “Well mom, the hormone fairy has asked him to the dance, and he has accepted."
He is only 11, My baby is growing up, What does this mean? and Oh no, it’s time for the sex talk, were all the thoughts running through my head. I pulled myself together enough to ask her, "What does puberty look like in a child with autism?” She told me it is different for each child; however most will be more sensory-defensive during this time. She asked me to close my eyes and imagine what it would feel like to feel every single hair growing on my body, what would it feel like to feel the lump of an adam’s apple forming in my throat, and to feel all of the aches as the muscles grow and form in my body. She explained that this is what my son is feeling on a magnified level. This completely explained his change in behavior and his new sensitivity.
Armed with the knowledge of what was happening, my husband and I immediately put a plan of action in place.
The first thing we did was communicate this information to his teachers and therapists. This allowed them to make adjustments in their support. It helped him to continue to be successful and get the most out of school and therapy.
Second, we talked to him about what was going on with his body. We discussed the physical and the mental changes that were happening. What stood out to me most was that once we assured him everything he was feeling was “normal,” his irritability lessened by 50 percent. I realized the unknown of what was happening was half of the stress he was feeling. We also asked him to tell us what things he thought would help him cope. He said exercise. Lightbulb moment! My son is a swimmer, and pre-pandemic he was in the pool for three 2-hour sessions per week. This gave his body good sensory work out. Since the pandemic he had been only able to do one 45-minute session per week. His body and brain needed a workout to cope and process all the changes that were happening. Since our son had done Tae Kwon Do in the past and enjoyed it, we picked that up twice a week. It took a few weeks, but we finally started seeing our son return to his rule-following, kind-hearted, non-irritable self.
Lastly, we told him to come to us with any questions or thoughts he had about what was going in with his body. We told him nothing was off limits. We also prepared ourselves to be ready and open to answer any questions and have uncomfortable conversations. This part is ongoing, and things come up day by day. However, we have built a deeper level of trust that will be helpful as we enter the teen years.
What I have learned on this journey is to start researching and talking to your doctors about puberty when your child is 10 years old. Prepare yourself and be open to questions and conversations. Honestly, if puberty was on my radar, I would have had a preparatory conversation with my son at 10 years old. I would have told him in a very clinical way what changes he may see in his body, and to let me know when it starts happening.
Trust what you know about your child. If they have sensory issues, prepare for them to feel body changes on a deeper level, and think of activities they enjoy that can help their bodies cope with the feelings. Be patient, give them grace, and assure them that all the strange things they are feeling are normal and okay. Lastly, as a parent of a special needs child, remember our journey is a marathon: Breathe and give yourself a break. You are doing great!