Lets talk about Mama Guilt. You all know what I’m talking about. Are you spending enough time with your kids? Do you cook enough? Are you involved enough? Are you working too much? Are they too independent? Are they not independent enough? And so on….
Now lets add in a special needs mom… Are they developing correctly? Do they need more services? Are you pushing too much? Are you not pushing enough? Do they need another specialist? Do they have too many specialist? Are they close to reaching milestones? Are you holding them back? Will they be able to attend school? Do you want them in mainstream class? Are they healthy? Are you educating yourself enough? Are you talking to them enough? And so on…and so on…
Welcome to the life of a special needs parent. It is full of worry and stress that you are not doing enough…or doing too much. It’s trying to find a balance of letting your child be a child…and pushing them to do all their therapeutic needs. Its a constant fear that you are the reason they are behind and fear that they will never catch up. Honestly, its an odd feeling of having it all together and falling apart at the same time.
Today I got hit with mama guilt….bad! We traveled up to Radys (2 hour drive) to have Peanut evaluated for Occupational Therapy services. It is not offered at all in our area so that means we have to get it elsewhere. She started the evaluation asking about her eating habits. Some of her issues have come from the GI appointment we had so she wanted to address those. So she had Peanut eat (snacks at therapy?! Peanut was in love!) Instantly she told us that Peanut doesn’t chew her food properly. She chews with only her front teeth and is unable to manipulate the food to chew with her molars. We’ve noticed she chews in front…but had no clue it was a problem. She said because of this, she is having a harder time eating different foods (Meat for example) since she needs her molars to break it up. Also, when we explained how she seems to gag when she drinks water (almost like shes drowning) she instantly came to the conclusion that is was also because of her low muscle tone in her mouth. She said the water is difficult to swallow so she cant manipulate the water correctly to swallow the way she should. Which explains why she often throws it up as well. LIGHT-BULB! Seriously, it all just made sense. All the worries we’ve had and struggles getting her to eat, this lady provided us with answers in less than 15 minutes! She helped us come up with techniques to do with her and recommended other foods to try.
Instantly my mama guilt kicked in. I even asked her if she was worse off then we imagined. We had no clue her eating habits were a problem and causing the other issues. I felt horrible that I didn’t fight more to get her into OT sooner. That I didn’t do enough. That I failed her! Are these logical fears? No not really. We’ve been asking almost every doctor we see why she gags when she drinks. We’ve told them about her eating sensitivity. I’ve fought with our local agency to get approved for OT. It took 5 months of being on the phone constantly fighting to get her appointment. I understand I did these things…but the guilt doesn’t. When it comes to Peanut’s therapy and progress, I take the reign. Juan is involved all along, but I’ve made it all my responsibility. That also means, I feel like if Peanut is delayed more than she is expected to be, its my fault as well. Almost in tears I sat and listened to more therapy techniques we need to start her on at home.
When we got in the car the first thing Juan told me was this isn’t my fault. He knew exactly what I was feeling. He saw the look in my eyes and tried to reassure me that Peanut is doing good. He wanted to take some of the weight off my shoulders so I understand that we do everything we can for her.
I honestly think its because I am so terrified I will fail her. The big kids just learned things naturally. I didn’t have to walk them through simple things step by step. Jana has to be taught almost every new milestone. I’m so scared that if I don’t do things correctly, she will be even more behind than she should be. I know this isn’t just my fear. I’ve spoken to a couple of other special needs mamas. We’re not sure if this fear ever goes away!
Maybe that’s the price that comes with being a special needs parent. Maybe that worry and guilt makes us appreciate every tiny victory. It’s what helps us keep fighting when it seems hopeless. To attend every therapy session, every doctor’s appointment, every meeting to get your child where he/she needs to be. The guilt drives us to do more when we feel like giving up. The guilt makes us be better parents. I would take all the guilt and more if it meant I get to see Peanut live a long happy life. She is my motivation to be better.
Btw…she will be starting OT 2 times a month. We just have to wait about 3 weeks for the evaluation to be processed then put on a wait list for therapy to start!