by Sophia's Mom
Being summer and sensory issues on the mild side (sorry I don't know what else to call them except Sophisms ~ daughter's name) we tried to have the binki fairy come to the house. Since we have always talked things through with Sophia we did the same with our attempts to remove the pacifier (her binki). She was at the point where she would only use it in the car and at bedtime (hardest points of transition, to school and to sleep). Rather than just have the fairy come I said we could "just try it for a night" when she was ready. She said she was ready to try it and did ok for the first night. Then we pushed it a bit and all the sensory issues that had been mild all summer went to the extreme.
Sophia has never been able to self sooth and relied on either the binki or me to help. Determined to stick with it and urged by other parents who advised it would just be a few days we kept the binki away. She was a mess, we never worked through something this way. The meltdowns were hours long and violent. She could feel every seam on every piece of clothing, she could feel every hair that was out of place, her blocks would never line up in just the right way, a drop of water on her dress was agony... I have never seen her throw herself on the ground so hard, bite her clothes, literally rip her cloths off of her (torn at the seams). The only way she fell asleep was from exhaustion of screaming (our perfect soothing bedtime routine became a trigger to scream). After an intense workup, she would not want to be touched for about 30 minutes while she scream so I just sat near her. Then when she was ready I had to hold her in a specific bear hug way wrapped with her weighted blanket to fall asleep.
On day 5 I listened to
my supportive family and called the OT from the local school (not qualified for IEP but the OT wanted to help) she had little to offer except the advise to give it back (this was not her specialty but works with many SPD kids in her class). We called the developmental specialist at Sophia's doctor's office who has known her since birth but summer also mean vacation for many people and we did not hear back from her. Wanting to help her but really not knowing what to do, I called a local OT place that specializes with SPD. They did not advise either way about the binki but scheduled us for an evaluation (a few weeks away).
On day 7 (averaging about 3-4 hours of sleep a night) I brushed her hair and the meltdown started. I had to put her down to swap the car seat between the cars and in her rage she ripped two huge handfuls of hair out of her head. I picked her up and simply said "oh becareful hun" she looked down at her hands and said "what happened?" Like she did not even know what she was doing. Then the melt down continued since she could not get that last piece of hair off her hand. Then I grabbed the binki and put it in her mouth. Done.
It took three weeks to get my loving child back. Now our bedtime routine is great and sensory issues predictable again.
We are going to the OT in 2 days for the evaluation but I am asking you parents who have been through this. What have you done? Is it worth the wait?
Reasons for wanting to remove the binki:
1) open bite (her teeth no longer touch by at least 1/2 inch
2) doctor and dentist said enough
3) speech is impacted
4) social stigma
Advise and personal stories are welcome. This site is great for helping me know that we are not alone even when all the doctors dismiss the symptoms.