Yes, I am that mom

I am the mom that was devastated when we were told that Bridget would struggle but were not given a reason why, that traveled over 20 hours by car to see a doctor who might give us a diagnosis. We got a diagnosis, we got a family and we finally got support.

I am that mom that when the insurance company refused to approve the formula that would keep my child off tube feeding offered to drop Bridget off at the Insurance company’s office and they could rethink their decision after 24 hours caring for her.  We got the approval and Bridget kept down a bottle for the first time in almost a year.

I am that mom that when an intern in neurology told me that my child would never roll over, jump or be a part of society went over his head and got the Chief of Neurology on the phone. Bridget got the neurologist that believed in her and has not only jumped but she has skipped and swam and runs.

I am that mom that when early intervention said my child may not speak, started out patient therapy at a pediatric clinic. Not only did I gain life long friends, Bridget gained paragraphs.

I am that mom that when the school district was re-districting and giving no thought of how that would impact the children with special needs ran for school committee. Not only did I gain insight into the system, I am able to make sure parents with children who have special needs have a voice at the table.

I am that mom that when we were told Bridget has sensory issues and maybe should not push her going to the beach, I reminded them we live on a freaking sandbar. In March Bridget was a flower girl at a wedding on the beach. In her bare feet.

I am that mom that when the school system had no idea how to transition Bridget to kindergarten worked with the Director of Special Education to create an inclusive education plan for Bridget. This plan is still in place four years later, where Bridget has been a part of her 4th grade community and not an interloper.

I am that mom that when the school system closed on March 13, 2020, immediately started looking for a plan. It took time, but a month later we have a plan in place and Bridget is receiving special ed, OT and SPT remotely almost every day.

I am that mom that when she realized if Bridget remained in pajamas she was losing the skills learned in OT. I am that mom that makes her get dressed now, by herself, even if it is only for a few hours a day.

I am that mom that drives doctors, therapists and teachers crazy. I am that mom they probably mostly hate to see in their email inbox.  I am that mom that wants to work with the teachers and therapists to make sure Bridget attains everything someone said she would not do.

I am that mom that truly appreciates the teachers and therapists, but will remain the Captain of the team. I am that mom that knows if we did not have open communication and teamwork Bridget would be lost without all of the co-Captains.

I am that mom that tries to be patient, but worries of time lost.

I am that mom that listens in to therapy and special education distance learning, so that we can reinforce the lessons at home. We are trying to make this abstract world routine for Bridget so we listen to make sure we use the same terms and language. Not to micromanage the teacher, ESP or therapist, but to have them understand we do not believe 30 minutes with just you is enough time.

I am that mom that worries we are never going back to school for the summer program or even in September.

I am that mom.

I am that mom that believes in my child.

I am that mom that puts in the work.

I am that mom who truly appreciates the supports we have been given, even though I ask for more.

I am Bridget’s mom. She made me that mom. The mom that always listens to the experts, collaborates when possible and fights when needed.

I am that mom that will not let her down.

 

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Please note, I would never ask a therapist, teacher, ESP or doctor/nurse work during this unprecedented pandemic.  However something is happening to families whose child has special needs and we have to talk about it.

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