What would you do if?

What would you do if you found out you had a diagonses that was so un heard of that when you told a dr at the Er room about it the dr, nurse or even the teachers at your kids school looks at you like your making something up! Or that they heard of it but don’t exactly understand what it entails and symptoms are.

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What if you are 35 and still experience the same conversations over and over again with these professionals that have letters behind their names. What if people looked at you like you were slow or crazy because they didn’t get your quirks and the reason why you must do things a different way then they do.

What if you had a child with the same disorder you have and they to had to try and explain what made them go to dr vists every single week to keep up with treatments and theraphys along with some things so miner in your mind and world you even forget to bring up those impoartant details such as bedwetting at 11 and fear of public bathrooms or having social issues with some of the kids at school who have to question why she’s away and missing out on class almost every week for a visit to a dr who is over a hour drive just because there is not that many doctors who are out there who understand and get your child’s needs quirks because you are still trying to figure them out as you go even at 11.

What if your child had all of this and you no longer qulaifed for ssi ? then what would you do if your income went to the amount where you no long have to have the assistance of ssi because they only gave you 100 and you are too tired and exhausted from dealing with your own doctors visits and life happenings you don’t want to fight the battle for 100 dollars. It’s not worth the time or the energy to appeal but you know if you did they would have to read the file and would understand clearly in detail because you wrote so much in the review they couldn’t tell other then her speech improving that she is still disabled a bit in her own ways such as mild cereabral palsy where she has leg pains she works out in physical therapy and she sees a person who she can talk with about issues at school and home.

what if your kid is about to enter middle school and all of those services and supports she been getting in school are going to be swiped from under her even bus unless you get her an aid. The what if I get her an aid and she’s going to Middle school next year and kids can be so crule that would only isolate her and single her out further.

Do you go out of your way and get an aid for your able child who struggles just enough to not meet the standared help she needs but has to struggle daily with tasks that come from having panic and adhd issues or do you hope that walking daily back and forth to a school that is only a few blocks away would do her some good in all kinds of weather where she is exposed to the elements that the Michigan weather can bring.

This is my current what if’s

What are some of your what ifs? comment below I’d love to hear how things are going and what some of your what if’s are.