In case you are coming to this blog late, I thought I’d back up a bit and summarize the journey my middle daughter has taken in the past few years. I’m retelling our story in an effort to help other moms with children who have issues with anxiety and some that suspect selective mutism.
My second daughter was diagnosed with separation anxiety, generalized anxiety and selective mutism when she was in preschool. She was 4.5 at the time. She could talk my ear off at home, but not say a peep in preschool. She and I also had some pretty intense struggles. We couldn’t walk two blocks without her getting tired and needing to be carried (not easy when I had to take a stroller out with the baby and didn’t have a double stroller). She literally would stop and wail that she couldn’t walk anymore. Forcing her to walk only made the wails louder.
Prior to preschool, I didn’t even have a clue what selective mutism was and how it related to her separation anxiety.
I knew she was shy. I knew she was my clingy baby before preschool. I knew she wouldn’t stay in the nursery at church long enough for me to attend my mother’s group when she was 18 months. I knew she CONSTANTLY HAD to TOUCH ME. When I nursed my youngest, she had to be right by my side stroking my arm the entire time. As she grew, her behavior became more difficult and demanding and the clinginess never went away.
I knew she had some monstrous meltdowns, multiple times a day (when I mistakenly opened her granola bar package by mistake, she would meltdown for 20 minutes about it when she was about 3.5). It was more than draining it became excruciating to deal with day in and day out. I was a nervous wreck because I didn’t know how to help her. I went on medications for a short while because I couldn’t meet her needs and the needs of the other two very little children. I hated being a mother for a time because I couldn’t solve this never-ending problem and it was hell.
I worried about mild autism. SM can be associated with it, but not always. It can exist without being on the spectrum. My middle child is incredibly bright, attentive to details, has a lot of affection/eye contact/give and take of any typical child.
I had enormous guilt too. I didn’t know if the problem was mine solely or if there was something amiss with her. It was a combination of both. I didn’t know how to handle what I was seeing because it was beyond my ability to help.
She wouldn’t go to sleep without me (still needs me at 5.5 to lay down with at night because she’s afraid of monsters).
What I didn’t know was why.
I had her evaluated for behavioral issues at the start of preschool when she was almost 4 with the Preschool Early Intervention in my state. I was literally at the end of my rope. I begged the preschool to give me a recommendation for someone to help me diagnose her. That’s when they gave me the number for the Early Intervention Preschool group who then set up an assessment for her. Only when all was said and done, she did not participate. At all. I distinctly remember asking the coordinator how often that happened. She said, not very often, usually they could bring the kids out of their shells long enough to respond to something.
At that point, they didn’t even throw out any possibilities, just told me I could wait a few weeks and see what happened at preschool, then get further psych evaluations done. I said, okay. And let it go indefinitely. School didn’t improve anything. In fact, she never spoke a peep, and also never caused them trouble either. I got the brunt of her difficult behavior when she’d meltdown at home from the stress of keeping her anxiety in check.
Until 6 months later, when my mom took her on a field trip for me because I was sick, and she didn’t even talk to her when directly addressed (not even after being bribed with ice cream) and she suggested selective mutism.
I thought my mom was 1) armchair analyzing my daughter and 2) somehow I thought selective mutism couldn’t explain ALL the behaviors dd exhibited – the bossiness at home, the need to control me and everyone around her, the clinginess, etc as well as the not speaking at school or with her.
I was amazed at what I found when I started researching. Everything fit. It was then I decided to find a private pediatric neuropsychologist, one who was familiar with what SM was and more importantly, what it was not (ie, that they could tell the difference between seletive mutism and autism spectrum disorders).
The selective mutism is an anxiety disorder, and of course separation anxiety is too. Sometimes, sensory issues play a role. My daughter did have some problems with water and sound. She hated washing her hands or water on her clothes, and often put her hands over her ears and tell me “it’s too loud” but gradually, these things faded away as her system became more mature.
After the official diagnosis by a pediatric neuropsych, we ruled out autism disorders definitively and ruled in selective mutism/separation anxiety/generalized anxiety.
It was a relief, and because we caught it early, she is now 5.5 and in a Early intervention preschool (which is not necessary, but it has been tremendously helpful for us), and focused on anxiety reducing and sensory activities to help her modulate input, things have been much improved.
I think I’ll post another post to talk about what has worked for our daughter since this one is getting quite long.