Being a mom is hard. I know a lot of people say that, and it means different things to different people.
Today is Mother’s Day, and so I am going to be transparent about what I am going through as a mom, today. What I am about to share is really hard for me, and I want to be respectful of the privacy of my little ones.
I took Paprika to a pediatrician back in December, who after meeting her and talking with me, said that she believed Paprika has Asperger’s Syndrome and Sensory Processing Disorder (SPD). I dismissed the pediatrician, but used her referral to start Occupational Therapy at a pediatric clinic near us to work on some of Paprika’s sensory issues.
Well, the OT clinic did a three hour evaluation of Paprika, and they agreed with the pediatrician.
Again, I dismissed what they said. I didn’t really like the OT who worked with Paprika. He was a young guy, no kids of his own…and I felt like he didn’t really understand Paprika.
Then, last month we had Paprika’s preschool teacher evaluate her. In her evaluation, she touched on a lot of the issues the pediatrician and the OT had. Again, I dismissed her as not understanding our “quirky” child.
A few weeks later, we had the Developmental Kindergarten assessment. We did not tell them anything about Paprika beforehand because we wanted to see what they thought just from their observation of her. After Paprika was chosen for the program, I spoke with the director for a long time, and she said what so many people had said before and my mind started to open a little more.
I called to Ann to get some sympathy. She’s an Occupational Therapist with over 15 years experience. I expected her to agree with me and tell me how right I was – that all these other people really did not know my child. But instead, she gave me an earful and told me to wake the heck up!
So, last week I scheduled an appointment for a private Occupational Therapist (OT) to come to our house to meet with Paprika. She is a pediatric OT who specializes in feeding issues and sensory integration function.
One of our biggest issues with Paprika is eating/food, and so I thought meeting with this OT would be a step in the right direction. She came highly recommended, and comes to our house (as opposed to us going to the clinic, which was not working)…so even though she is out-of-network for our insurance, I thought it would be the best thing for us.
And it was!
She was just amazing! It is so incredible the difference between a gifted OT and one who does not connect with your child. She was at our house for two hours and she was able to get Paprika to do things we never could get her to do !
One thing she noticed right away is that Paprika does not move her tongue at all when she eats. She does not move it from side to side. She does not push the food around. It makes it extremely difficult for her to eat, and so she has learned to only eat a few “safe” foods that she can control easily in her mouth and eat with very little effort. This probably goes back to when Paprika was an infant and had reflux, so eating was painful for her, and she learned to associate food with pain.
She watched Paprika do many of her normal, everyday activities. Towards the end of the appointment, she said kind of matter-of-factly that she knew what Paprika’s diagnosis from the pediatrician was, and that she could also see it…that many of the traits Paprika has are consistent with an Asperger’s and SPD diagnosis.
Well, that just kinda floored me. I spent most of Thursday, Friday, and Saturday crying about it. Feeling isolated. Thinking I probably should not tell anyone because I don’t want our child to be treated differently or ostracized. Then again, when she acts differently than other kids, I don’t want people to judge her or me, thinking she is acting out or just being difficult.
I don’t want this to be a label on her. Or a life sentence. On the other hand, I want her to get the help she needs. I don’t want to spend my life with my head in the sand pretending that things are different than they truly are.
It is a really fine line to walk.
In a way, all of this confirms what I have known in my heart for a very long time. Until Ginger came along, Paprika was my only experience mothering. So I didn’t know any differently. But with Ginger, things were a lot different…and so much easier. Parenting books sometimes made sense, when with Paprika they never did. With Ginger, I listened to the advice of other moms and it worked most of the time. When I tried those same tactics with Paprika, it was as disaster.
I spent a lot of my time when Paprika was a baby/toddler feeling so different from other moms because raising her was just so very different. And then if I talked about how it was harder because of this or that, it either made me feel more alienated, or the finger was pointed at me…if I were a better parent then, xyz…
One thing I can say is that the longer I am a mother, the less I judge other parents. I have had that judgement cast my way so many times. If people only knew how hard I have tried and the efforts I’ve made, I just don’t think they would stand there and judge me.
I know a lot of moms are like that…trudging away in silence trying to do the very best they can for their child, and so proud of the little victories their children make that other people overlook or take for granted.
So, when a child is having an out of control tantrum in public, I think to myself, “I bet that mom has been through hell and back trying to take care of her child.” And I don’t judge her. Or the child.
That’s the scoop this Mother’s Day. I am so grateful for all my precious babies, who have each taught me so very much. I am excited to go on this adventure with Paprika and see where it takes us! Even if motherhood isn’t at all what I expected, I am enjoying the ride. 🙂
Happy Mother’s Day to all the moms and all the hope-to-be moms. I am especially praying for all the moms whose hearts hurt on Mother’s day…those who will celebrate without their mothers, mothers who will celebrate without their children, and those who long to be mothers.